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• DOI: 10.1108/jpmh-04-2024-0055
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A systematic review of the limitations and associated opportunities of chatgpt, deductive qualitative analysis: evaluating, expanding, and refining theory, conceptualising and measuring positive mental health literacy: a systematic literature review, mental health education integration into the school curriculum needs to be implemented, review: school-based mental health literacy interventions to promote help-seeking - a systematic review., public opinion towards mental health (the case of the vologda region), quantifying the global burden of mental disorders and their economic value, mental health literacy: it is now time to put knowledge into practice, clarifying the concept of mental health literacy: protocol for a scoping review, positive mental health literacy: a concept analysis, related papers.

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Something old, new, and borrowed . Rise of the systematic reviews

• Published: 24 August 2024

Cite this article

• Gheorghe-Gavrilă Hognogi 1 &
• Ana-Maria Pop   ORCID: orcid.org/0000-0001-9958-1391 1  

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Systematic reviews and other types of literature reviews are more prevalent in clinical medicine than in other fields. The recurring need for improvement and updates in these disciplines has led to the Living Systematic Review (LSR) concept to enhance the effectiveness of scientific synthesis efforts. While LSR was introduced in 2014, its adoption outside clinical medicine has been limited, with one exception. However, it is anticipated that this will change in the future, prompting a detailed exploration of four key dimensions for LSR development, regardless of the scientific domain. These dimensions include (a) compliance with FAIR principles, (b) interactivity to facilitate easier access to scientific knowledge, (c) public participation for a more comprehensive review, and (d) extending the scope beyond mere updates to living systematic reviews. Each field needs to establish clear guidelines for drafting literature reviews as independent studies, with discussions centring around the central theme of the Living Systematic Review.

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Assessing the certainty of the evidence in systematic reviews: importance, process, and use.

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Romina Brignardello-Petersen, Gordon H Guyatt, Assessing the Certainty of the Evidence in Systematic Reviews: Importance, Process, and Use, American Journal of Epidemiology , 2024;, kwae332, https://doi.org/10.1093/aje/kwae332

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When interpreting results and drawing conclusions, authors of systematic reviews should consider the limitations of the evidence included in their review. The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach provides a framework for the explicit consideration of the limitations of the evidence included in a systematic review, and for incorporating this assessment into the conclusions. Assessments of certainty of evidence are a methodological expectation of systematic reviews. The certainty of the evidence is specific to each outcome in a systematic review, and can be rated as high, moderate, low, or very low. Because it will have an important impact, before conducting certainty of evidence, reviewers must clarify the intent of their question: are they interested in causation or association. Serious concerns regarding limitations in the study design, inconsistency, imprecision, indirectness, and publication bias can decrease the certainty of the evidence. Using an example, this article describes and illustrates the importance and the steps for assessing the certainty of evidence and drawing accurate conclusions in a systematic review.

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• Published: 31 August 2024

Experiences of quality of life and access to health services among rare disease caregivers: a scoping review

• Tina Černe   ORCID: orcid.org/0009-0003-6413-9239 1 ,
• Lijana Zaletel Kragelj 2 ,
• Eva Turk 3 , 4 &
• Danica Rotar Pavlič 1  

Orphanet Journal of Rare Diseases volume  19 , Article number:  319 ( 2024 ) Cite this article

Metrics details

Research on rare diseases focuses less on caregivers, who play an important role in meeting the medical and social needs of the people they care for. Caregivers of people with rare diseases face negative outcomes due to problems with diagnosis, caring for complex conditions and expensive treatments. However, the factors that affect their quality of life are poorly understood. Poor mental and physical health of caregivers has a direct impact on the person they are caring for.

To explore the literature on this topic, we conducted a scoping review in which we identified and analysed relevant studies to find out how extensively this topic has been researched. The articles were retrieved from the bibliographic databases PubMed, Ovid Medline and Ebsco Cinahl.

We initially identified 299 references and then included thirty-four articles. The included articles address three main topics, namely caregiver quality of life, health care accessibility, and the impact of health care accessibility on caregiver QOL.

This study provides information that is important to multiple providers of services as it can help to better understand caregivers and people with rare diseases and improve the quality of services offered. It highlights areas with the greatest need for change and offers insight into the complexity of caring for people with rare diseases, assisting policymakers in developing policies to support informal caregivers.

In Europe, rare or orphan diseases are defined as diseases with a prevalence of less than 5 per 10,000 people in the population [ 66 ]. The estimated number of different rare diseases is currently around 10,000 [ 32 ]. While the incidence of individual diseases is low, the collective prevalence of all types of rare diseases is high [ 76 ]. The Council of Ministers of the European Union estimates that 6 to 8% of the European population will be affected by a rare disease in their lifetime [ 58 ]. For most rare diseases, appropriate medical interventions have not yet been developed or the treatment is still unknown [ 79 ]. Although EU rare disease policy has been successful, rare disease stakeholders agree that there are still significant problems with access to orphan drugs at national level and that there are major inequalities in this area [ 61 ].

People with rare diseases and their families face the challenges of delayed diagnosis, difficult access to health care, and financially unmanageable treatment [ 74 ]. With the exception of studies focusing on specific diseases and their pathophysiology, there are few studies looking at the experiences of rare disease caregivers [ 16 ]. Caregivers of people with rare diseases are usually parents or spouses. They bear most of the physical and emotional burden of caring for a person and usually receive no financial compensation for their role [ 16 ]. In addition, many are forced give up or reduce their jobs because they have to take on the responsibility of caregiving, which can lead to additional financial problems [ 8 , 46 ].

Caregiving can involve many adjustments in a caregiver’s life, such as providing transport, running errands, providing emotional support, monitoring symptoms, taking on additional household tasks and adapting to a special diet [ 10 , 73 ]. Caregivers play an important role in the daily management of the disease. Their physical and mental state has a direct impact on the level of care they can provide to the person with the rare disease. Providing informal care can lead to unimaginable emotional, social and physical health outcomes [ 8 , 51 , 53 , 64 , 76 ].

Recently, more attention has been paid to caregivers of people with rare diseases and their quality of life (QOL). It has been shown that the role of caregivers exposes them to many negative effects resulting from the problems of diagnosis, care of complex diseases and the difficult and expensive treatment regime [ 8 , 25 , 51 ].

Studies investigating the QOL of caregivers have mostly conducted for specific rare diseases. Therefore, there is a lack of a synthesis of results that examines the factors that influence the QOL of caregivers. Knowledge about rare diseases is low, not only among the general population but also among healthcare providers [ 69 ]. Few studies have been conducted to determine how access to healthcare services affect caregivers of people with rare diseases. It has been shown, that people with rare diseases, regardless of their disease, face the same problems in accessing healthcare [ 43 ]. They encounter barriers to accessing appropriate information and specialists (who may be located in other countries) [ 76 ].

In our daily practice interacting with caregivers and people with rare diseases, we have found that there is a great need for better support and understanding of these issues and a lack of knowledge about the challenges of caring for people with rare diseases. It is therefore crucial to identify clear areas for change that should be evidence-based to help researchers, healthcare providers and other service providers develop, plan and deliver better services. To gain more information about how barriers to accessing health care affect caregivers’ QOL and to identify key areas for change. We conducted this study to learn more about how barriers to accessing healthcare affect caregivers’ QOL and to identify key areas for change. This study is one of the few to examine the relationship between QOL and barriers to access to healthcare for caregivers with rare diseases, filling a gap in international research. By exploring these questions, we aim to contribute to a broader understanding of caregiving around the world and provide valuable insights for policy makers, healthcare providers and researchers worldwide.

The aim of this study was to conduct a comprehensive literature review to address two key research questions: (1) the impact of access to health care services on the quality of life (QOL) of informal caregivers of individuals with rare diseases, and (2) the factors associated with QOL and access to health care services among informal caregivers of rare diseases.

Due to the exploratory nature of our research questions, we used a scoping review method for this study. As described by Arksey and O’Malley [ 6 ], scoping reviews serve to identify and map the available evidence on a particular topic in order to obtain a comprehensive overview of the literature. Our aim is to explore the relationship between quality of life and access to healthcare for caregivers of people living with rare diseases, and the scoping review approach fits with our aim to capture the broad landscape of literature on this topic [ 6 , 57 ]. With this review, we aim to highlight key concepts, features and knowledge gaps in the existing literature to providing a foundation for future research [ 6 , 57 ]. The methodological framework for scoping reviews proposed by Arksey and O’Malley guided us through five key steps [ 7 ].

Identification of the research question

In this study, we answered the following two research questions: (1) How does caring for a person with a rare disease affect the caregivers QOL? (2) How does access to healthcare services affect the QOL of caregivers of people with rare diseases?

Identification of relevant studies

For the literature search, journal articles published between 2005 and 2021 were searched using keywords in the following electronic databases: PubMed Central, PubMed, Ovid Medline, and Ebsco Cinahl. This time frame was chosen in order to capture the latest developments while ensuring comprehensive coverage of the existing literature. Literature searches were conducted in November and December 2021. We searched the database PROSPERO to ensure that no similar studies had been started or were planned. Search term strategies can be found in the additional files (refer to Additional file 3 ).

Study selection

A reviewer reviewed and selected the titles and abstracts that emerged from the database searches. The full texts of the selected references were then retrieved, reviewed, and article selection followed. In addition to the search strategy, we manually searched the reference lists of the included articles. To ensure proper selection of articles, some of the full-text publications were subsequently reviewed by another independent reviewer. For access to other primary sources and full-text versions of articles, we used Google Scholar and ResearchGate. The complete list of inclusion and exclusion criteria with descriptions can be found in Additional file 4 .

Charting the data

A data extraction sheet was developed to record information on authors, year, country and to identify the main themes in the included articles. We recorded the information as follows: (a) Study characteristics: authors, year and country of publication, (b) study objective, (c) study design, study methods, type of QOL instruments, (d) sample size, age and sex distribution, (e) type of rare disease, (f) common themes, (g) study results. We also reported the type of sample if the study design was qualitative. Summary and evidence tables were created for this purpose. To determine whether the diseases in the included articles were rare, we checked whether the prevalence of the disease met the European definition of rare diseases, which is defined by a prevalence of less than 5 per 10 000 people in the population [ 66 ].

Collating, summarizing, and reporting the results

In the fifth and final phase of the review, information was collected on caregivers’ QOL, access to healthcare and their possible relationship. As the studies were too heterogeneous, we undertook a narrative synthesis of the results.

General description

During the literature search, we identified 299 articles after removing duplicates. 183 articles were excluded based on title, and another 119 after reviewing the full text. The search was carried out from 22 November to 23 December. Finally, after reviewing the content of the remaining articles, 34 articles matched the searched topic. The procedure for selecting articles for a scoping review is show in Fig.  1 .

Flow diagram of inclusion and exclusion process in the scoping review

Study characteristics

A total of 34 studies met the inclusion criteria, which are listed in Table 2: Details of selected articles found in the literature search on the QOL of rare disease caregivers; and Table 3: Details of selected articles on access to health services for rare disease caregivers (see Additional file 1 and Additional file 2 ). Twenty-four studies used quantitative methods, 6 studies used qualitative methods and four studies used a mixed methods approach. The quantitative studies primarily used questionnaires and, in some cases, online surveys ( n  = 24) to collect data; the qualitative studies used face-to-face interviews ( n  = 5) and focus groups ( n  = 1) to collect data. The mixed methods studies used a combination of interviews (focus groups, face-to-face interviews, telephone) and questionnaires and online surveys.

The included studies were from 18 different countries. Figures  2 and 3 , showing the choropleth maps, clearly illustrate the samples included in this review. A detailed description of the included studies and the countries of origin can be found in the Additional file 5 (see Additional file 5 ).

Country origin of studies included in the scoping review

European countries included in the review

Fifteen different questionnaires were used to analyse QOL in the studies and are listed in Table  1 The gender distribution showed a higher proportion of women compared to men in most studies. Sample sizes in the included quantitative studies varied widely, ranging from 12 to 952 caregivers and from 5 to 33 caregivers in qualitative studies.

Results addressing QOL

We discovered three themes related to caregivers’ QOL. The first was the QOL of caregivers compared to other groups, such as caregivers of chronically ill or healthy control experts. The second was the dimensions of QOL that were most affected, and the third was the factors that influence the impairment of QOL.

QOL of informal caregivers in compared to other groups

Eight studies reported that the QOL of caregivers decreased significantly [ 1 , 5 , 28 , 37 , 49 , 54 , 67 , 82 ], seven studies also found that the QOL of caregivers was significantly lower than that of healthy controls [ 2 , 12 , 45 , 54 , 75 , 82 , 84 ]. A study by Berrocoso et al. also found that the QOL of informal caregivers of rare diseases was also lower compared to a group of caregivers of chronic diseases [ 12 ]. When comparing different types of rare diseases studies by Guarany et al. and Qi et al. found that the QOL of caregivers was significantly lower for more severe forms of rare diseases [ 31 , 65 ]. In terms of QOL and mental health, four studies reported that mothers appeared to be more affected than fathers [ 13 , 31 , 41 , 84 ]. In contrast to the previously mentioned studies, a French study found that the QOL of caregivers was consistently high, i.e. not negatively affected by caregiving [ 54 ].

Affected dimensions of QOL

In thirteen studies, caring for people with rare diseases led to lower scores in the psychological dimension of QOL, i.e. more anxiety and depression [ 5 , 12 , 24 , 28 , 36 , 40 , 45 , 49 , 52 , 54 , 70 , 82 , 84 ]. Informal caregivers often reported that the physical activity dimension was also severely impaired [ 12 , 13 , 28 , 31 , 36 , 52 , 54 , 67 , 82 ]. Four studies also reported that caregiving impacts social QOL, as caregiving burden reduces their engagement in social relationships and with their partners, which in turn negatively affects QOL [ 21 , 40 , 52 , 70 ].

Factors that influence QOL of caregivers

The QOL of the cared-for person and the informal caregiver appears to be linked. Xu et al. found that the severity of illness perceived by patients is an important factor influencing the health-related QOL of family caregivers [ 84 ]. In addition, three studies showed that a positive relationship between the QOL of the caregiver and the QOL of the cared-for person was also a factor [ 2 , 82 , 83 ]. The age of the person being cared for appears to influence QOL of caregivers. A study by Antoniadi et al. found that relative to the patient’s age of at onset of illness, a later onset was associated with a lower QOL score for the caregiver [ 5 ]. In addition, studies by Roach et al. and Boettcher et al. found that the age of the person with a rare disease is an important determinant of QOL, with QOL increasing with age, i.e., younger age is associated with poorer QOL [ 13 , 67 ]. The duration of caregiving was also related to QOL in two studies: the longer the caregiver provided care, the lower the caregiver’s QOL [ 2 , 28 ], Kanters et al. found this was also true for the number of hours spent providing care [ 36 ]. The employment of caregivers affected QOL of caregivers. Rodríguez Bermejo et al. and Alshubaili et al. showed that all those who were unable to do paid work scored higher on measures of psychological distress [ 2 , 68 ]. Rodríguez Bermejo et al. also found that people who were separated or single had higher scores for feeling overwhelmed than the rest, and single people had lower QOL scores [ 68 ], suggesting that marital status has an impact on QOL. Caregiver sleep quality was an important factor of perceived QOL as found by Feeley et al. [ 24 ]. QOL of caregivers was also negatively affected when the person they cared for had the same residence [ 81 ]. We found two factors that positively influence the QOL of caregivers. In a Chinese study, shared caregiving was found to have a positive effect on improving caregivers’ health-related QOL [ 84 ], and three studies found that better education led to better QOL [ 2 , 12 , 84 ].

Results addressing access to healthcare services

A summary of the results of the individual studies can be found in Table 3. Six studies were qualitative [ 11 , 18 , 19 , 22 , 30 , 39 ], and one was quantitative [ 33 ]. Four studies were qualitative phenomenological studies [ 11 , 18 , 22 , 30 ], two were qualitative grounded theory studies [ 19 , 39 ] and one was a cross-sectional study [ 33 ].

Diagnostic odyssey

Five studies reported that caregivers had difficulty seeking or obtaining a diagnosis [ 11 , 18 , 19 , 33 , 39 ], and two studies reported misdiagnosis [ 11 , 39 ]. Hiremath et al. found that caregivers reported medical challenges, such as switching to multiple providers before receiving a diagnosis [ 33 ]. In addition, four studies found difficulties accessing various healthcare services (e.g., referrals to specialists, physiotherapy…) [ 11 , 22 , 30 , 39 ]. Grut et al. found that the lack of involvement of many different service providers was described by caregivers as particularly difficult when it came to healthcare providers [ 30 ]. Due to the lack of treatment options, caregivers felt they had to take whatever they could get, even if the treatment was not licenced, as reported in a study by Kesselheim et al. [ 39 ].

Lack of knowledge

A common barrier to accessing healthcare services in five studies was a lack of knowledge and information on the part of healthcare providers [ 11 , 19 , 22 , 30 , 39 ]. In addition, caregivers in six studies reported difficulties in accessing information about the disease and its treatment, either on websites or from healthcare providers [ 11 , 19 , 22 , 30 , 33 , 39 ]. Currie et al. and Grut et al. found that many healthcare providers were encountering this rare disease for the first time [ 22 , 30 ]. Currie et al. and Grut et al. also found that healthcare providers sometimes made decisions based on their personal assumptions about the disease or were reluctant to refer to the information offered by caregivers and they tended not make the effort to seek additional relevant information about the diagnosis [ 22 , 30 ].

Limited collaboration and integration of health services

To overcome barriers to healthcare, caregivers had to adapt to the role of care coordinator, as coordination between different clinics and specialists was poor, as found in three studies [ 11 , 19 , 22 ]. Caregivers also took on the role of advocate because healthcare providers lacked knowledge and caregivers often knew more than healthcare providers, as reported in four studies [ 11 , 22 , 30 , 39 ]. Contact with other caregivers or participation in support groups proved to be a source of information for accessing healthcare services, as noted in three studies [ 11 , 19 , 39 ].

Financial issues

Baumbusch et al. and Hiremath et al. found that problems accessing healthcare services affect families’ financial resources as they have to pay out of pocket [ 11 , 33 ]. A study by Kesselheim et al. also found that another barrier to healthcare in certain countries is the lack of insurance coverage due to insurance companies’ lack of knowledge about the rare disease [ 39 ].

Although rare disease research is attracting increasing attention, access to healthcare services for caregivers of people with rare diseases has not been extensively studied. The aim of this review was to examine how challenges in accessing health care relate to caregivers’ QOL. To our knowledge, this study is one of the few studies to examine how QOL is viewed through the lens of barriers to accessing healthcare, with a focus on caregivers.

Our first objective was to investigate how caring for a person with a rare disease affects the caregiver’s QOL. Similar to the study by Boettcher et al. on the QOL of parents of children with rare diseases, we found that caregivers had a poorer QOL than healthy controls and caregivers of people with other chronic diseases [ 14 ]. The dimensions most affected by caregiving were psychological, physical and social. Caregivers of people with rare diseases were more likely to suffer from depression and anxiety. Our findings are consistent with a review by Pelentsov et al. which found that caregivers of people with rare diseases often feel physically exhausted suffer from sleep disturbances, fatigue, loss of appetite, weight loss, headaches and frequent colds [ 62 ]. Due to caregiving, they experience social isolation, loneliness, and dissatisfaction. Participation in social activities may be further limited by the complexity of the person’s condition and their dependence on medical devices [ 42 ]. They often feel that their social life is being cut short, that they are losing their freedom and they yearn for more spontaneity [ 62 ]. This points to the problem of the lack of respite services for rare diseases, which would allow caregivers to look after themselves and give them a much-needed break.

We found several factors that influence the QOL of caregivers of people with rare diseases. Consistent with previous research by Boettcher et al. and Pelentsov et al., we found that disease severity, patient age, education, gender, and unemployment are important factors influencing QOL [ 14 , 62 ].

In addition, we identified several new factors that influence the QOL. Sleep quality was found to correlate with QOL. As already stated by Azizi et al., better sleep quality leads to better mental and physical health and vice versa [ 9 ]. The patients perceived severity of illness was also a factor influencing caregivers’ QOL. Patients with more severe symptoms needed more support from their caregivers. It is to be expected that the QOL scores reported by caregivers caring for patients with severe illnesses would be lower than those reported by caregivers caring for patients with milder symptoms [ 20 ].

The QOL of caregivers was negatively affected if the person they cared for lived in the same house. This could mean that the person being cared for has a more severe form of the disease and needs more care, which may lead to a greater burden on the caregiver and negatively affect their QOL. These findings are consistent with those of Hughes et al. who found that having a family relationship with the care recipient and living with the care recipient were associated with higher levels of objective burden [ 34 ].

Furthermore, this could explain a positive relationship between the QOL of the caregiver and the QOL of the person being cared for. Regarding the age of the patient at the disease onset, later disease onset was associated with a lower QOL score for the caregiver. We hypothesise that this result is related to the fact that the rare disease was diagnosed later in life. This finding is similar to that of Lingen et al. who showed that the final diagnosis improves the QOL of parents whose children have a disability [ 47 ]. If this is the case, it could also be that caregivers have not received the necessary information, which is an important factor in predicting caregivers’ QOL.

The finding that a later onset of the diseases is associated with a lower QOL can also be explained by Kenny et al.‘s study, which emphasizes the significant impact on the psychological well-being of caregivers and supports the idea that early diagnosis and psychological support are crucial for better adaptation [ 38 ].

Increasing duration of care had a negative effect on QOL, both true for daily hourly care and years of care. As Vitaliano et al. emphasise, the somatic condition of caregivers deteriorates with increasing duration of care and makes them more vulnerable to the negative effects of stress [ 77 ]. Marital status was also found to have an impact on QOL. Those who were separated or were single had higher scores for feeling overwhelmed than the rest, and single people had a lower QOL, possibly suggesting that single caregivers experience less social and caregiving support and therefore experience greater strain. This could also explain the finding that shared caregiving had a positive effect on improving QOL. These interpretations would be consistent with previous findings that spouses report the lowest burden of caregiving, suggesting that sole caregiving leads to a higher perceived burden [ 34 ].

We have found that mothers have a lower QOL compared to fathers, especially in the psychosocial aspects of QOL. In families with disabled children, the traditional division of roles seems to be more pronounced, meaning that the mother takes on the role of caregiver, which is associated with lower well-being. In addition, Gray et al. have shown that illness in the family can have different meanings for men and women. In particular, women are more likely than men to blame themselves for their children’s problems and to see their identity threatened by their children’s illness [ 29 ]. As Simon noted, the differences do not just reflect differences in engagement with domestic responsibilities [ 71 ]. Even when men and women experience the same conflicts regarding work and family roles, these conflicts are interpreted differently and often to the detriment of women [ 71 ].

Our second objective was to examine how access to healthcare services affect caregivers of people with rare diseases. The most frequently cited barrier to accessing healthcare was the difficulty in obtaining a (correct) diagnosis, or the so-called diagnostic odyssey. As Nutt et al. have previously noted, delays in diagnosis and misdiagnosis are a major problem and can lead to many avoidable hospitalisations and inappropriate treatments and tests [ 58 ].

Lack of knowledge of medical staff was cited by caregivers as the most common reason for delayed diagnosis, failure of treatment or denial of social services. This led to conflicting information about the diagnosis, misunderstandings [ 78 ], or inadequate and missing information [ 26 ]. Caregivers reported how difficult it was to find healthcare providers who knew about the disease or had information about treatment. This finding is similar to that of Pelentsov et al. who found that the most frequently cited need of parents of people with rare diseases was the need for information [ 20 ]. The lack of information available to parents makes this situation difficult to deal with. Unsurprisingly, parents felt that more information and a better understanding of the disease and what to expect would help them cope with the challenges [ 17 ]. If they knew what community health services were available for their child, they could plan more confidently for the future [ 62 ]. Caregivers criticise that they refuse to seek help to overcome the limits of their knowledge [ 35 ]. The lack of knowledge and treatment options makes caregivers feel that they have to take whatever they can get, even if the treatment is not approved.

Caregivers reported limited collaboration and integration between healthcare providers, prompting them to take on the role of care coordinator to ensure that all healthcare providers have information and the newest results. They must advocate for the person they are caring for has access to much-needed services. As McMullan et al. found, caregivers often have unparalleled personal knowledge of how a rare disease affects the person, although they rarely receive enough practical or medical information to help them in their role [ 50 ]. This phenomenon often disrupts the relationship between caregivers and service providers, with caregivers taking on the role of “expert” [ 17 ]. The lack of involvement of many different service providers, but particularly the lack of involvement of healthcare providers, could be due to uncertainty about their knowledge of the rare diagnosis and therefor their suitability for treatment [ 44 ].

Problems with access to health care services also affect the financial resources of caregivers as they have to pay out of their own pocket. Although the government sometimes provides a small amount in the form of a caregiver allowance, this is not nearly enough to cover the costs of medical treatment and travelling [ 3 ]. Raising a disabled child comes with significant additional costs [ 50 ], and sometimes caregivers have to reduce their paid working hours or leave the workforce altogether [ 63 ]. Another obstacle to the utilisation of care services is the lack of insurance coverage in certain countries because insurance companies are not aware of the rare disease. A study by Gater et al. found that many drugs that are potentially effective for rare diseases are not covered by health insurance companies when used off-label in rare diseases patients [ 27 ].

We found that caregivers were able to overcome the barrier to accessing health care by interacting with other caregivers or participating in support groups, which were valuable sources of information.

Our third objective was to examine whether access to health care services affects the QOL of caregivers of people with rare diseases. Similar to our findings, Spencer-Tansley has found factors that affect the QOL, such as caregivers having to assume the role of care coordinator, social isolation, additional financial burden, and lower QOL due to time spent on care [ 72 ]. Challenges related to access to and coordination of services negatively impacted mental health. These included: trying to access health services or treatments, how care is coordinated, access to financial support, and access to other supports such as social care or respite care. Thus, we can assume that poor coordination of health services poses many emotional challenges. We found that challenges to accessing health services affect the psychological and social dimensions of QOL. Delays and difficulties in diagnosis and treatment and misdiagnosis were associated with anxiety, frustration, and stress, which affected the psychological dimension.

Even when the disease is diagnosed, finding a competent specialist can be a major problem. The psychological dimension of caregivers’ QOL is also affected, as caregivers face obstacles due to the rarity of the disease and are confronted with the lack of knowledge of healthcare providers. As von der Lippe et al. have found, the lack of knowledge about the rare disease can lead to delayed diagnosis, incorrect treatment or denial of services, all of which can have a negative impact on caregivers’ QOL [ 78 ]. Spencer-Tansley has also found that interactions with healthcare providers have a negative impact on mental health [ 72 ], and usually lead to stress, frustration and anxiety [ 17 , 63 ]. Many caregivers report that physicians are confronted with the disease for the first time and have no treatment plan for the disease, that they have no information about possible support groups, and that caregivers usually have more information than providers. Because of this, caregivers feel more responsible and have emotional reactions such as loneliness and insecurity related to the social dimension of QOL. An additional stressor for caregivers is the lack of involvement of healthcare providers. This is also a reason why they feel abandoned and frustrated, which affects both the psychological and social dimensions of QOL. The difficulty of finding a provider may be complicated by the fact that rare diseases can affect multiple organ systems. The number of specialist clinics is limited and they are located in regional centres [ 4 ] and can therefore be far away, requiring caregivers to travel long distances. This can place an additional strain on caregivers’ financial resources. Previous studies of thyroid cancer survivors also suggest that financial hardship and negative financial events are associated with poorer QOL [ 55 ].

We found that caregivers who connected with other peers online had access to information and emotional support. This is consistent with previous research on breast cancer patients that both social support from other patients can improve QOL [ 48 ].

A recurring observation in all countries analysed in this review is the predominant involvement of mothers as primary caregivers. Regardless of cultural context, mothers were the main caregivers, indicating a universal caregiving role. This finding is consistent with the comprehensive cross-cultural study by Weisner and Gallimore, who analysed data from 186 societies worldwide and found that mothers, along with female adult relatives and female children, predominantly assumed the role of primary caregiver for infants and young children [ 80 ].

Studies from Germany [ 13 ], Spain [ 12 ], Australia [ 56 ], Canada [ 49 ], Brazil [ 31 ] and Italy reported lower levels of social support, which may mean that participants from these Western countries, known as more individualistic cultures, may prioritise personal autonomy over collective caregiving tasks or may simply not have the ability to rely on family due to their schedules. This observation is consistent with the findings of Humphrey and Bliuc, who found that while individualistic traits such as personal fulfilment and freedom of expression can enhance psychological well-being, other aspects of individualism such as limited social support, competitiveness and social comparison may contribute to a decline in social relationships and mental health in Western populations in recent decades [ 37 ]. This could also explain the reliance on formal care services instead of family support mentioned in the Australian (Mori et al., 2017) and Canadian [ 22 ] studies could indicate cultural norms or societal structures that favour formalised care services over informal support networks, or simply the availability of these services that have yet to be developed in other countries.

In contrast, Nigerian caregivers reported a medium to high levels of perceived social support, indicating a more supportive social environment for caregivers in this cultural context [ 1 ]. Cultural factors such as strong family ties, community support networks or cultural norms that emphasise collective responsibility for caregiving may contribute to the higher levels of social support observed among Nigerian caregivers. In Nigeria, as in many other African countries, social support from the extended family is taken so much for granted that it is commonly referred to as the “African extended family system” [ 23 ].

This review compiled detailed information on the impact of caring for people with rare diseases on caregivers’ QOL, with a particular focus on their experiences of accessing healthcare services for the people with rare diseases they care for. It is clear that, caregivers of people with rare diseases face many unique issues and should be better supported to alleviate their burden. This study shows that healthcare systems need new strategies, as the current healthcare systems often leave it up to caregivers to become rare disease experts and advocate for to access to treatment and help. This responsibility should not be left in the hands of caregivers but, needs to be addressed systematically. By highlighting the impact of barriers to accessing healthcare services, we wanted to encourage policy makers and care providers to develop new strategies to support caregivers and improve health outcomes.

Furthermore, the consistency of our scoping review with previous studies by Boettcher et al. and Pelentsov et al. [ 14 , 62 ] emphasises the consistency of the challenges faced by caregivers in different contexts. While Pelentsov et al. focused primarily on the needs of parents of children with rare diseases, the parallels that emerge from their findings are strongly consistent with the challenges we identified in our study. This consistency highlights the universal nature of the challenges of caring for people with rare diseases and emphasises the need for comprehensive support systems tailored to the specific needs of carers around the world.

Study limitations and strengths

Our study has some potential limitations. First, the search strategy was limited to English-language studies. Therefore, there may be other literature that is equally relevant to the area of QOL and access to health services but may have been overlooked. Although the inclusion of articles in other languages would likely increase the selection of relevant articles, the scientific world tends to publish as much as possible in a single (English) language. The selection of articles was primarily made by one reviewer, but in cases of doubt an independent review was conducted. Also, due to the search strategy, we may have excluded many rare diseases, so QOL and access to healthcare may not be well represented for all diseases. However, this limitation was addressed by a manual search of the reference lists of included studies, which allowed us to access many studies published under other search terms.

We found that in most of the studies we examined, the voices of female caregivers were present. Less is known about the experiences and challenges faced by male caregivers. The literature often emphasises the perspective of female caregivers, so we do not understand how male carers manage their role, cope with stress and interact with healthcare systems. We do not assume that caregivers are homogeneous. Therefore, caregiving and its relationship to gender and coping must be adequately assessed to provide an accurate description of the differences between men and women in relation to this phenomenon.

The included studies that used a qualitative design utilised purposive sampling, i.e., recruitment of participants focused on sources where caregivers of children with rare diseases were active, such as hospitals and rare disease support groups. This meant that participation was limited to those who had more connections to services and peer support. Therefore, it is possible that other perspectives and experiences of services were not well represented.

On the other hand, the study also has some important strengths. As far as we know, this is one of the few studies that examines access to health services among rare disease caregivers, focuses on caregivers’ quality of life, and examines how QOL is affected through the lens of barriers to accessing healthcare. This review also includes all known research in selected bibliographic databases. The strengths of this literature review lie in its methodological and systematic approach, that explores the experiences of caregivers of people living with rare diseases from both qualitative and quantitative perspectives. The review provides insights into the complexities of caring for people with rare diseases and highlight many areas for improvement in the future to enable better planning of health care and other services.

Implications for practice

These findings may help to understand the problems associated with caring for people with rare diseases. This information could help service providers to better understand and help caregivers of people with rare diseases to appropriate support. It can help primary care physicians by providing information about the needs of caregivers, such as the need for continuity in dealing with diagnostic uncertainty and the provision of an empowering and collaborative approach.

The review emphasises the importance of prioritising carers of people living with rare diseases in Slovenia, as they face very different challenges to carers of older people, who already receive more attention [ 15 , 60 ].

Future research

Future research should focus on examining cultural or regional differences in the impact of rare diseases on caregiver QOL and access to healthcare. Further research could focus on examining the impact of rare diseases on caregiver’s QOL with treatable diseases comapred to those without treatment. It might also be interesting to examine at how the needs of caregivers change over time. Further research should also consider the use of longitudinal studies and larger samples to investigate the impact of care on QOL. Studies such as the one by Rotar-Pavlič et al. study on the experiences and feelings of informal caregivers of elderly in Slovenia and the challenges and difficulties they face in the society [ 60 ] would also be welcome.

Caregivers’ QOL is impaired compared to parents with healthy children, parents of children with chronic diseases, and compared to normative values. Female caregivers appear to be more affected than male caregivers. We found that the physical, psychological, and social dimensions of caregivers’ QOL are most affected. Many factors seem to influence caregivers’ QOL. Caregivers of people with rare diseases have many common experiences in accessing healthcare. They struggle with lack of information, diagnosis, misdiagnosis, access to services, lack of engagement with healthcare providers and lack of treatment options. Barriers to accessing health care appear to affect caregivers’ QOL. Delays in diagnosis and lack of information can lead to increased anxiety and stress, which in turn can affect caregivers’ QOL, particularly the psychological and social dimensions. Peer support appears to be a great help in obtaining information about health services and provides emotional support. In summary, our findings reveal consistent patterns in the QOL of caregivers across different rare disease diagnoses and healthcare systems and highlight that caregivers of people with rare diseases face common challenges in different contexts.

Data availability

Not applicable.

Abbreviations

• Quality of life

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Constructive comments from Dr. Špela Miroševič from the Department Family medicine from Medical faculty, University of Ljubljana are gratefully acknowledged.

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. TČ was supported by the Slovenian Research Agency (Research in the Field of Public Health, P3-0339).

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TČ was responsible for conceptualizing the scoping review study and defining the research objectives and scope. TČ conducted a systematic literature search in various databases, screened relevant articles and extracted data from appropriate studies. TČ also conducted the data synthesis and analysis. In addition, TČ wrote the first version of the manuscript and coordinated the contributions of all co-authors. LZK played an important role in the scoping review by providing valuable insights during the planning phase of the study. They actively participated in refining the research questions, identifying appropriate inclusion and exclusion criteria and discussing the overall structure of the article. LZK, critically reviewed the manuscript, and offered valuable suggestions to improve the clarity and presentation of the findings. DRP was involved in monitoring the progress of the Scoping Review, providing constructive feedback throughout the research process and contributing its expertise in the field. In addition, DRP was instrumental in critically reviewing and revising the manuscript to ensure the accuracy and completeness of the information presented. ET’s critical review of the manuscript improved the language and structure, resulting in a more coherent and effective final version. ET suggested improvements that strengthened the overall narrative and improved the clarity and visual appeal of the article, making it more accessible to readers. All authors critically reviewed and approved the final version of the manuscript before submission.

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Černe, T., Kragelj, L.Z., Turk, E. et al. Experiences of quality of life and access to health services among rare disease caregivers: a scoping review. Orphanet J Rare Dis 19 , 319 (2024). https://doi.org/10.1186/s13023-024-03327-2

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Ecological care in nursing practice: a Walker and Avant concept analysis

• Golshan Moghbeli 1 ,
• Amin Soheili 2 ,
• Mansour Ghafourifard 1 , 3 ,
• Shahla Shahbazi 1 &
• Hanieh Aziz Karkan 1  

BMC Nursing volume  23 , Article number:  614 ( 2024 ) Cite this article

Metrics details

Today, the human population faces an increasing array of emerging environmental challenges. Despite its importance, nurses often neglect ecological issues, which can compromise patient health. While the ecological nursing perspective has the potential to lead to innovative care approaches that benefit patients, the nursing profession, and the environment, the concept of ecological care lacks a clear definition and its dimensions remain unclear. This study aimed to analyze and clarify the concept of ‘ecological care’ in the nursing discipline.

Walker and Avant’s analysis method was used to identify descriptions, antecedents, consequences, and empirical referents of the concept of ‘ecological care’ in nursing. We searched the databases (PubMed, Scopus, PsycINFO, CINAHL, ERIC, SID, and IranDoc) using the keywords “ecological,” “nurse,” and “nursing” using Boolean operators “AND” and “OR” in the title and abstract fields both in English and Persian to identify relevant literature on ecological care in nursing.

Ecological care, as a multidimensional concept, encompasses ecological thinking, ecological attitude, ecological awareness, ecological sensitivity, and ecological literacy. This entails the optimal utilization of environmental factors to provide patients with high-quality care and preserve ecological sustainability through environmentally friendly behaviors.

Conclusions

The findings highlight the need to elucidate, endorse, and solidify ecological thinking in all aspects of nursing care including nursing management, education, and research, which can lead to improved care quality, patient safety, and sustainability. Within this framework, nursing educators could play an essential role in integrating ecological care into nursing education. The study emphasizes the need to integrate ecological thinking into all aspects of nursing.

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Ecology, the study of interactions between living organisms and their environments, encompasses physical and social surroundings that impact all living beings. From a human science perspective, ecology emphasizes these interconnected relationships, fostering a deeper understanding of nursing and caring practices [ 1 ]. Currently, environmental concerns are considered significant threats to public health. However, healthcare professionals often lack sufficient awareness of the importance of ecological issues [ 2 ].

As the largest group of healthcare professionals, nurses play a crucial role in decisions regarding product use, energy consumption, and chemical selection in healthcare settings. However, they face a significant challenge: balancing environmental concerns and ecological principles with their professional duties [ 3 ]. Although nurses can advocate reducing exposure to harmful chemicals and adopting less toxic products, their work environments often require high energy consumption and generate substantial medical waste [ 4 ]. This medical waste encompasses both hazardous (infectious, pathological, chemical, pharmaceutical, cytotoxic, and radioactive) and non-hazardous or general waste, posing potential risks to patients, communities, and broader ecological health [ 5 ]. Multiple studies have highlighted the critical role of ecological considerations within healthcare in the overall health of ecosystems [ 6 , 7 , 8 , 9 ]. Consequently, ecological issues have become a high priority for nurses, demanding attention and action [ 10 ].

The importance of environment, ecosystems, and ecology in nursing practice has been recognized by pioneers like Florence Nightingale as the founder of modern nursing (published in 1992, originally written in 1959) [ 11 ] and subsequently by Fawcett (1984) [ 12 ]. This vision is further reflected in the International Council of Nurses (ICN) Code of Ethics, which states that “nurses contribute to the population’s health and work to achieve the sustainable development goals.” By adopting sustainable practices, nurses can significantly reduce their environmental footprint and contribute to achieving the UN 2030 Agenda for Sustainable Development [ 9 ]. Recognizing this crucial role, nursing organizations such as the American Nurses Association actively promote nurses’ participation in environmental protection initiatives [ 13 ].

The concept of ecological care in nursing, as a multidimensional concept, encompasses several aspects. Lausten (2006) proposed a nursing ecological theory to broaden nurses’ perspectives by incorporating concepts of global ecosystems, communities, and interrelationships from the ecological sciences. This theory recognizes that human interactions with the environment extend beyond the personal sphere and encompass professional activities. Consequently, nurses can integrate ecological principles into their practice, fostering new directions in care that benefit patients, healthcare professionals, and the environment [ 14 ]. Dahlberg et al. (2016) conducted an empirical study to explore how a phenomenological life-world theory could expand the concept of holistic care into “ecological care.” They argued that the traditional approach to holistic care has neglected environmental and ecological dimensions. Their findings suggested that ecological care goes beyond fighting illnesses. It emphasizes understanding patients within the context of their world, a world that they both influence and are influenced by. This approach helps patients reintegrate into their rhythm of existence [ 1 ].

Al-Shamaly (2021) highlights “ecological awareness,” which emphasizes creating a safe and comfortable patient environment through noise, light, color, and temperature control [ 15 ]. Sattler (2013) adds another dimension, suggesting that nurses can act as catalysts for transforming hospitals into environmentally sustainable spaces. This can be achieved through practices such as adopting environmentally friendly purchasing policies (e.g., waste management strategies, reduced chemical use, and proper disposal of hazardous materials such as batteries), promoting healthy food options, and favoring mercury-free products [ 16 ].

Although ecological factors could influence the quality of care, patient safety, individual and community health, resource preservation, and sustainable practices [ 16 , 17 , 18 , 19 ], nurses’ awareness of ecological care and its dimensions remains limited [ 2 ]. Moreover, there is no universally accepted definition of ecological care as a complex concept [ 20 ]. Therefore, this study aimed to analyze and clarify the concept of ‘ecological care’ within the nursing discipline.

Walker and Avant’s concept analysis method was used as a rigorous and systematic approach to identify descriptions, antecedents, consequences, and empirical referents of the concept of ‘ecological care’ in nursing. Ecological care is a widely applicable concept that extends beyond the confines of nursing care. Therefore, the literature review encompasses all the various applications of ecological care, including both implicit and explicit aspects. The stages of the concept analysis method are as follows: (A) selecting a concept, (B) determining the aims or purposes of the analysis, (C) identifying all uses of the concept that you can discover, (D) determining the defining attributes, (E) identifying a model case, (F) identifying borderline, related, contrary, invented, and illegitimate cases, (G) identifying antecedents and consequences, and (H) defining empirical referents [ 21 ].

Literature search

A systematic literature review was conducted using multiple health databases, including PubMed, Scopus, PsycINFO, CINAHL, ERIC, SID, and IranDoc. The concepts “ecological,” “nurse” and “nursing” were searched using Boolean operators “AND” and “OR” in the title and abstract fields of each database. No temporal limits were applied and articles published in either English or Persian until July 2023 were retrieved.

Initially, 1083 records were identified by searching the titles and abstracts of these databases. Subsequently, 16 additional records were manually included, resulting in a total of 1099 records. Duplicate records were removed, leading to an initial selection of 1068 records. The titles and abstracts of these records were screened, and the eligibility criteria were applied to the full text of the selected records. Eventually, 36 records met the criteria and underwent a comprehensive review of concept analysis (Fig.  1 ). A detailed overview of the included studies, including publication year, title, country, and key findings, can be found in Appendix A.

Flow diagram of the study (data search and selection process)

Concept selection

The importance of a specific concept is influenced by a variety of factors both within and outside its field over time. Consequently, concepts lacking clear definitions warrant further analysis [ 21 ]. Considering the interconnectedness of ecosystems and human health, as well as the imperative to maintain environmental sustainability, particularly within healthcare, the concept of ecology has gained prominence in nursing and other health professions. Nightingale’s emphasis on the environment underscores this importance. Given the increasing significance of ecological care in healthcare and the lack of a clear, unified definition, this concept was selected for analysis to elucidate its dimensions and characteristics.

Determining the aims of the analysis

The concept of “ecological care” has been insufficiently analyzed within the healthcare context, resulting in a lack of a clear definition. This study aims to refine the meaning of ecological care in nursing by identifying its descriptions, antecedents, consequences, and empirical referents.

Identifying the use of the concept

To explore the concept of ecological care, it is crucial to understand the distinct meanings of each word from a variety of sources such as dictionaries, thesauruses, websites, and scholarly literature.

According to the Merriam-Webster dictionary, the term ‘ecological’ is an adjective related to the science of ecology. This refers to the environment of living things or the relationships between living things and their environments [ 22 ].

According to the Merriam-Webster dictionary, the term ‘care’ functions both as a noun, representing responsibility for or attention to health, well-being, safety, or solicitude, and as a verb, meaning to feel interest or concern and to provide care [ 23 ].

Ecological care in nursing literature

The concept of ecological care, originating from the theory of biological ecology, aims to offer solutions that effectively minimize the adverse impacts of nursing care on the ecosystem [ 14 ]. Ecological care can be classified into two types: individuals and professionals. The individual approach focuses on raising public awareness, shaping attitudes and behaviors, and promoting responsible actions regarding energy consumption, the production of toxic substances (such as greenhouse gases), chemical usage, and healthy and organic diet adoption. Conversely, the professional approach emphasizes the importance of sensitivity, awareness, attitude, behavior, and responsible actions among individuals when carrying out their professional responsibilities [ 9 , 24 ].

Clinical environments require ecological care, which can be achieved through two distinct approaches: environmental and organizational care. Environmental care involves maintaining equipment and machines, ensuring workplace safety, minimizing risks, managing noise levels, optimizing lighting conditions, regulating temperature, and employing creative designs to create a comfortable and relaxing environment. It also involves facilitating visits from family members and pets and improving patients’ sleep quality. Additionally, the use of digital technology helps ensure a healthy and safe treatment environment for patients in the Intensive Care Units (ICU). On the other hand, organizational care focuses on time and resource management. This includes strategies such as reducing paper and ink consumption by utilizing electronic records, which aids in efficient time management. Organizational care aims to streamline nurses’ tasks and improve overall work efficiency by minimizing their workload and improving access to patient information. Finally, waste management practices play a crucial role in maintaining an environmentally conscious approach in healthcare settings [ 15 ].

Determining the defining attributes

Ecological thinking.

According to Balgopal and Wallace (2009), ecological thinking is a combination of ecological understanding and ecological awareness [ 25 ]. Understanding ecology involves understanding concepts such as biotic, abiotic, and biological interactions. This serves as the initial stage of ecological thinking, which is further developed by comprehending the impact of human activities on the ecosystem [ 26 ]. Ecological understanding can be conceptualized as a continuum, with one end representing the capacity to identify problems and propose ecological decisions, considering their potential consequences. On the other end of the continuum is a lack of understanding, where the ability to explain the impact of human actions on the ecosystem is insufficient [ 25 ].

Ecological thinking causes a transformation in people’s presuppositions and attitudes towards the surrounding world, enabling them to recognize that we are interconnected and evolving alongside nature. Embracing an ecological perspective requires acknowledging ourselves as integral components of nature rather than being superior to it. This encompassing concept embodies various underlying principles such as ecology, wholeness, interdependence, diversity, partnership, energy flows, flexibility, cycles, and sustainability [ 17 , 27 ]. Hes and de Plessis (2014) refer to this set of principles as the ‘ecological worldview.’ Shifting towards an ecological perspective entail altering our perspective on the world and ourselves. The fundamental essence of this transformation involves moving away from egocentric and anthropocentric thinking, which emphasizes separateness, and instead adopting a holistic perception that aims to counterbalance environmental damage. Enhancing ecological thinking can be achieved through the instruction of ecological concepts and behaviors [ 28 ].

Ecological attitude

Ecological attitude is a complex construct that encompasses various key components such as emotions, perceptions, personal norms, values, and relationships with the environment. The emotional dimension of ecological attitude plays a pivotal role in preparing individuals to address environmental issues and cultivate ecological behaviors in all aspects of life [ 29 , 30 , 31 ], as it determines the extent to which individuals will act in environmentally responsible ways [ 32 ].

Predicting a specific behavior entails possessing a specific attitude towards that behavior, as attitudes alone do not guarantee behavior, but predict or influence it [ 2 , 33 ]. Ecological behavior can be defined as the actions taken by a nurse to protect the environment, and it varies depending on the individual’s context and circumstances. Achieving the goal of ecological behavior can be challenging in certain situations, but it is crucial to promote sustainable living and preserve the planet’s natural resources [ 31 ].

Ecological awareness

Ecological awareness refers to knowledge, attitudes, and behaviors related to the environment. Its focus is on increasing responsibility toward achieving ecological sustainability [ 34 ]. One of its important characteristics is the perception of natural objects from a subject’s perspective [ 35 ]. As a theoretical and practical science, ecological awareness includes two stages: awareness of environmental changes, and feelings of concern about environmental problems and trying to solve them. People with ecological awareness try to be actively responsible for their interactions with the environment and exhibit positive behaviors towards the surrounding environment [ 9 , 20 ].

Ecological awareness is also a level of cognitive thinking that enables nurses to focus on protecting the environment while providing nursing care. This concept requires nurses to pay attention to the potential of nature and the surrounding environment that promotes, maintains, and restores human health [ 9 , 14 ]. This raises important questions about whether nurses are aware of the positive effects of recycling medical equipment and materials, or the harmful effects of greenhouse gases (CO2, NO, etc.) caused by fossil fuels and smoke from medical waste incinerators. It also highlights how much nurses are aware of the impact of their care activities on ecosystem damage and public health [ 9 , 19 , 36 ]. The role of nurses with ecological awareness is crucial in raising awareness among colleagues, managers, patients, and students [ 8 , 37 , 38 , 39 ].

Ecological sensitivity

Ecological sensitivity refers to the inclination to actively address environmental threats and the extent to which healthcare providers demonstrate awareness of hazardous and protective circumstances [ 40 ]. Individuals with varying psychological traits, such as extroversion or introversion, exhibit distinct levels of sensitivity to environmental health [ 41 ].

Ecological sensitivity is a multidimensional concept that contributes significantly to sustainable development. This serves as an emotional foundation for cultivating an ecological worldview and establishing personal norms for pro-environmental actions. This dynamic framework takes shape within families during childhood and is strengthened throughout professional life. Therefore, an essential initial step in enhancing ecological sensitivity among healthcare providers is to impart ecological education and raise awareness levels [ 42 , 43 , 44 ]. The development of ecological sensitivity is influenced by various factors, including families, educational institutions, mass media, and non-governmental organizations [ 45 , 46 , 47 ]. In general, nurses who actively engage in staying informed about ecological news and trends, participate in ecological protection activities and events, and demonstrate awareness of ecologically detrimental behaviors, both in themselves and their colleagues exhibit higher levels of ecological sensitivity [ 42 , 43 ].

Ecological literacy

Ecological literacy is a crucial concept that includes three core components: cognitive, emotional, and behavioral. According to UNESCO, there are five key characteristics of ecological literacy: awareness and sensitivity to the environment; comprehension of environmental issues; having values and sentiments towards environmental concerns; possessing skills, desire, and commitment; and actively engaging in identifying and resolving ecological problems. Generally, ecological literacy can be defined as the integration of environmental sensitivity, knowledge, skills, attitudes, values, responsibilities, and active engagement, which enables nurses to make informed and responsible decisions to promote environmental sustainability [ 48 , 49 ].

Model and additional cases

A model case serves as a paradigmatic illustration of the application of a concept encompassing all its defining elements. In addition to the model case, two other types of cases are presented: (A) the borderline case, which shares most of the essential characteristics of the concept but exhibits some differences; and (B) the contrary case, which presents an apparent example that contrasts with the concept, highlighting what it is not [ 21 ].

A 65-year-old woman was admitted to the neurology ward with a diagnosis of transient ischemic attack during the night shift. The attending nurse approached the patient’s bedside and introduced herself and the inpatient department. During the evaluation, the nurse observed the patients’ uneasiness, homesickness, and concerns regarding sleep disturbance due to changes in sleeping arrangements. She addressed the situation by repositioning the patient’s bed next to the window, aiming to provide a more comfortable environment and alleviate feelings of homesickness. Careful attention was paid to ensure that the bed and equipment were securely locked. During medication administration, the nurse utilized a tablet for dosage calculations, opting for a paperless approach to reduce waste. Proper disposal procedures were followed after medication administration, with empty vials discarded in the chemical waste bin, and needles placed in a safety box. During the initiation of infusion, the nurse noticed loose screws on the electronic infusion device and promptly sought assistance from a colleague to rectify the issue. Toward the end of her tasks, the nurse dimmed unnecessary lights in the ward and adjusted the alarm range of the device to an audible level for more comfort. Immediately before leaving the ward, the nurse noticed a leaking water tap and promptly contacted the facility manager to initiate immediate remedial action.

Borderline case

The head nurse of the pediatric ward conducted a clinical round when she heard the cries of a hospitalized 4-year-old child who was upset due to the absence of her cherished doll. Regrettably, the nurses disregarded the situation and continued down the corridor. Several months later, the nurse was invited to join a committee responsible for making decisions regarding hospital equipment procurement. Drawing from the recent knowledge acquired through a TV program highlighting the hazards of mercury to human health, she recommended the acquisition of mercury-free medical equipment.

Contrary case

A nurse, aged 35, with ten years of experience in surgery, approached the patient who had undergone laparotomy to perform a dressing change. The nurse inadvertently wore a pair of sterile gloves instead of non-sterile gloves while removing the contaminated dressing and disposed of it in the general waste bin. Subsequently, sterile gloves were replaced with a fresh pair, the wound was cleansed using six sterile gauzes, and an additional seven gauzes were applied to dress the surgical site, although a smaller quantity would have sufficed. During the hand washing process, the nurse’s mobile phone rang, and without turning off the water tap, he engaged in a conversation until the patient’s family intervened and turned off the tap. Finally, despite the patient expressing mild pain at the surgical site, the nurse chose to administer a painkiller instead of utilizing non-pharmacological methods to alleviate pain.

Identify antecedents and consequences

Walker and Avant (2011) provided a clear definition of antecedents as events or attributes that precede the occurrence of a concept, whereas consequences refer to events that ensue from the concept’s occurrence [ 21 ]. In this study, it was crucial to identify and examine the associated antecedents and consequences (Fig.  2 ). Therefore, the antecedents and consequences investigated are as follows:

Attributes, antecedents, and consequences of ecological caring in nursing practice

Antecedents

The ecological care provided by nurses can be influenced by both personal characteristics and organizational policies. Personal characteristics include creativity, innovation, responsibility, environmental friendliness [ 41 ], kindness, empathy, and strong communication skills [ 9 ]. Meanwhile, organizational policies encompass the establishment of a supportive organizational culture, provision of training courses [ 14 ], and design of a creative and humanitarian environment within hospitals and healthcare facilities. Moreover, ensuring a safe environment equipped with adequate resources, services, technology, and competent human resources is essential for delivering ecological care in therapeutic settings [ 15 ].

Consequences

Ecological care yields numerous benefits to patients, their families, healthcare providers, healthcare systems, and the environment. Among these benefits, one of the most significant is the provision of high-quality holistic care, which leads to increased patient satisfaction. Additionally, ecological care contributes to patient and staff safety by minimizing hospital infections, conserving energy (electricity, gases, and water), optimizing equipment and time utilization, reducing employee workload, managing hospital procurement costs, and eliminating hospital waste. It also plays a vital role in preventing the entry of pathogens, chemical pollutants, and radioactive substances into the water, soil, and air. Furthermore, ecological care promotes ecological sustainability, safeguards the ecosystem, and helps protect food and agricultural resources by preventing food waste in the hospital setting. These considerations highlight the wide-ranging positive consequences of ecological care [ 14 , 41 ].

Empirical referents

According to Walker and Avant (2011), the final step in concept analysis is to identify the empirical referents of attributes. Empirical referents do not directly serve as instruments for measuring a concept, but they provide illustrations of how defining characteristics or attributes can be recognized or measured. By presenting real-world examples, empirical referents assist in measuring the concept and validating its significance [ 21 ]. Although this study did not identify a specific independent instrument for measuring ecological care in nursing, the following examples demonstrate instruments that measure the defining characteristics or attributes of the concept.

The Nurse’s Environmental Awareness Tool (NEAT) was developed by Schenk et al. in 2015 to measure nurses’ awareness of and behaviors associated with the environmental impact of their practices. The NEAT consists of 48 two-part items in six subscales and three paired subsets as follows: nurse awareness scales, nurse professional ecological behaviors scales, and personal ecological behaviors scales [ 9 ].

The Ecological Risk Perception Scale, developed by Slimak and Dietz in 2006, examines not only the attributes of the risk itself but also the characteristics of individuals perceiving the risk. Consisting of 24 ecological risk items, the scale encompasses four subscales: ecological, chemical, global, and biological [ 50 ].

The Environmental Literacy Questionnaire (ELQ) was derived from part of Michigan State University’s project and was originally used by Kaplowitz and Levine (2005) [ 51 ]. Later, Kahyaoğlu (2011) revised the ELQ. The revised version consisted of four components: knowledge (11 items), attitude (12 items), uses (19 items), and concern (9 items) [ 52 ].

Based on the current analysis, ecological care is a multidimensional integration of thinking, attitudes, awareness, sensitivity, and literacy to deliver high-quality holistic care while maintaining environmental sustainability and promoting energy conservation.

Analysis of the concept of ecological care has significant implications for the nursing profession. Given the limited exploration of ecological care within nursing practice, conducting an analysis can empower nurses to utilize ecological factors in delivering high-quality care and embracing environmentally friendly behaviors. The objective of this study was to present a comprehensive and practical definition of ecological care, thereby establishing a shared platform for not only nurses but also other healthcare professionals to promote pro-environmental behaviors.

Backes et al. (2011) conducted a study aiming to comprehend the meaning of ecological care from the perspective of students and teachers in the healthcare field at a Public Institution of Higher Education. The study revealed several categories, including (a) ecological care as a result of relationships, interactions, and communication with the global environment (main category); (b) the development of ecological awareness (causal conditions); (c) the connection of ecological care with different systems (context); (d) the perception of human-environment-health interaction (intervention); (e) the need to foster ecological consciousness through new references (strategy); and (f) a sense of motivation to understand ecological care (result). While this study acknowledged ecological awareness and conscience as integral components of ecological care, other attributes of the concept, such as adopting an ecological perspective; ecological literacy; and the impact of values, beliefs, and organizational culture on providing holistic care, were not extensively explained [ 20 ].

The findings of a study conducted by Dahlberg et al. (2016) revealed how ecological care facilitates patients to rediscover their place in a world characterized by interconnectedness. The role of ecological care extends beyond perceiving patients within a web of relationships; it encompasses assisting patients in re-establishing their sense of self and comprehending the world anew. Ecological care entails not only combating illness but also acknowledging patients as individuals influenced by and influencing the world. Such care endeavors to facilitate rhythmic movement and create space for activity and rest, being cared for and actively participating in one’s recovery, withdrawing from the world, and re-engaging with it. This study also highlights the use of the term ecological perspective to enhance the understanding of optimal care for patients. In this study, the novel attributes of the concept of ecological care are introduced. However, the potential impacts of constructive and destructive human activities on ecosystems remain unexplored [ 1 ]. In contrast, we refer to ecological sustainability and energy conservation as significant consequences of ecological care in nursing.

In a focused ethnographic study, Al-Shamaly (2021) explored the culture of multidimensional “caring-for” practice among ICU nurses. The inclusive nature of this culture encompasses caring for oneself, patients and their families, and colleagues (including nurses and other team members) as well as ecological consciousness within the ICU environment and organization. Ecological consciousness involves caring for equipment and machines, ensuring workplace safety, reducing hazards, transitioning towards a paperless unit, maintaining thorough documentation, and demonstrating commitment and concern for the organization’s budget regarding staff and resources [ 15 ]. While this study comprehensively addresses the practical aspects of the concept, it constrains the concept of ecological care solely to ecological consciousness. However, our study revealed that ecological care is a multidimensional, and complex phenomenon that extends beyond ecological consciousness. In another study, religious values were identified as a crucial factor in promoting an ecological care orientation that can be incorporated into daily life through religious education, considering the religious and cultural context of each country. These values are instilled into individuals from childhood to adulthood through various learning activities. Therefore, religious education plays a pivotal role in shaping individuals’ commitment to ecological care [ 53 ]. According to this study, religious values significantly contribute to the development of ecological thinking and the manifestation of ecological behavior.

Moreover, a previous study by Akkuzu (2016) introduced ecological intelligence as a new type of conscience, defined as a combination of environmental awareness and the sensitivity of human beings towards adverse global alterations in nature. This understanding empowers individuals to recognize the perils faced by their communities and comprehend the underlying causes. Furthermore, it equips them with the knowledge necessary to address these perils collectively and devise effective solutions [ 54 ].

Implications for nursing practice

While our analysis primarily focused on the ecological perspective, we contend that a profound understanding of this concept is imperative for establishing cultural and political frameworks within the healthcare system. This study contributes to the limited body of research on nursing by highlighting the essentiality of ecological and holistic thinking in the domains of caregiving, treatment, management, and education. Consequently, it has the potential to yield substantial impacts in ensuring the safety of patients and healthcare providers, enhancing the quality of care, and improving patient and family satisfaction.

Limitations

The conceptual analysis is subject to several limitations. Firstly, the literature search was confined to studies published in English and Persian, potentially limiting the diversity of perspectives from other countries, cultures, and languages. To mitigate this limitation, future studies should conduct a comprehensive search in multiple languages to ensure a more holistic understanding of ecological care in nursing practice. Secondly, the analysis is susceptible to selection bias, extraction bias, and analysis bias. To address these limitations, the study selection process, data extraction, and analysis were independently conducted by two researchers. Despite these limitations, the studies were described accurately and systematically, contributing valuable insights into the concept of ecological care in nursing practice.

The results of the present analysis provide a definition of ecological care in nursing that may guide the profession to new directions of care, striving for the greater good of the patient, the profession of caring, and the environment. It is clear that more research is needed to discover the neglected importance of the environment in holistic care and to identify phenomena related to this concept in practical nursing. The literature review shows that the educational field, as the most effective factor, plays a significant role in the formation of ecological literacy and worldviews and the creation of the perceptions, attitudes, and behaviors of ecological care. In this regard, nursing professors and instructors, as the most important role models, significantly contribute to the development of the identity and character of ecological care for today’s students and future nurses.

Data availability

The data supporting the findings of this study are available upon request from the corresponding author. The data were not publicly available because of privacy or ethical restrictions.

Abbreviations

Carbon dioxide

Nitric oxide

The United Nations Educational, Scientific and Cultural Organization

Nurse’s Environmental Awareness Tool

Environmental Literacy Questionnaire

Intensive Care Unit

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Acknowledgements

This study was extracted from a research project approved and supported by the Student Research Committee, Tabriz University of Medical Sciences (grant number: 73361). The authors would like to thank all those who spent valuable time participating in this research. We are also immensely grateful to the “anonymous” reviewers for their valuable insights.

The present study was financially supported by Tabriz University of Medical Sciences, Tehran, Iran.

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Golshan Moghbeli, Mansour Ghafourifard, Shahla Shahbazi & Hanieh Aziz Karkan

Department of Nursing, Khoy University of Medical Sciences, Khoy, Iran

Amin Soheili

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Contributions

GM, AS: original concept and study design; GM, HA, ShS: data collection; GM, HA, AS, MGh: data analysis and interpretation; GM, HA, AS, MGh, ShS: manuscript preparation and final critique; GM, MGh: study supervision.

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This study was approved by the ethics committee of Tabriz Tehran University of Medical Sciences (code of ethics: IR.TBZMED.REC.1402.614). All methods were carried out in accordance with relevant guidelines and regulations of Walker and Avant’s concept analysis method and qualitative research.

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Moghbeli, G., Soheili, A., Ghafourifard, M. et al. Ecological care in nursing practice: a Walker and Avant concept analysis. BMC Nurs 23 , 614 (2024). https://doi.org/10.1186/s12912-024-02279-z

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Cyclodextrin complexes for the treatment of chagas disease: a literature review.

1. Introduction

2. flowchart of this study.

3. Brief Review

3.1. cyclodextrin, 3.2. industrial applications, 3.3. complexation mechanism, 3.4. chagas disease, 3.5. biological cycle, 3.6. nifurtimox and benznidazole, 3.7. studies conducted on the treatment of t. cruzi, 4. impact of cyclodextrins on the optimization of drug solubility and efficacy, 5. impact of cyclodextrins with benznidazole in the treatment of chagas disease, 6. impact of cyclodextrins with natural products in the treatment of chagas disease, 7. discussion, 8. final considerations, 9. conclusions, author contributions, conflicts of interest.

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Taio, F.; Converti, A.; Lima, Á.A.N.d. Cyclodextrin Complexes for the Treatment of Chagas Disease: A Literature Review. Int. J. Mol. Sci. 2024 , 25 , 9511. https://doi.org/10.3390/ijms25179511

Taio F, Converti A, Lima ÁANd. Cyclodextrin Complexes for the Treatment of Chagas Disease: A Literature Review. International Journal of Molecular Sciences . 2024; 25(17):9511. https://doi.org/10.3390/ijms25179511

Taio, Fabrice, Attilio Converti, and Ádley Antonini Neves de Lima. 2024. "Cyclodextrin Complexes for the Treatment of Chagas Disease: A Literature Review" International Journal of Molecular Sciences 25, no. 17: 9511. https://doi.org/10.3390/ijms25179511

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• Open access
• Published: 31 August 2024

Incidence of post-extubation dysphagia among critical care patients undergoing orotracheal intubation: a systematic review and meta-analysis

• Weixia Yu 1   na1 ,
• Limi Dan 1   na1 ,
• Jianzheng Cai 1 ,
• Yuyu Wang 1 ,
• Qingling Wang 1 ,
• Yingying Zhang 1 &
• Xin Wang 1  

European Journal of Medical Research volume  29 , Article number:  444 ( 2024 ) Cite this article

Metrics details

Post-extubation dysphagia (PED) emerges as a frequent complication following endotracheal intubation within the intensive care unit (ICU). PED has been strongly linked to adverse outcomes, including aspiration, pneumonia, malnutrition, heightened mortality rates, and prolonged hospitalization, resulting in escalated healthcare expenditures. Nevertheless, the reported incidence of PED varies substantially across the existing body of literature. Therefore, the principal objective of this review was to provide a comprehensive estimate of PED incidence in ICU patients undergoing orotracheal intubation.

We searched Embase, PubMed, Web of Science, Cochrane Library, China National Knowledge Infrastructure (CNKI), Wanfang Database, China Science, Technology Journal Database (VIP), and SinoMed databases from inception to August 2023. Two reviewers independently screened studies and extracted data. Subsequently, a random-effects model was employed for meta-statistical analysis utilizing the “meta prop” command within Stata SE version 15.0 to ascertain the incidence of PED. In addition, we performed subgroup analyses and meta-regression to elucidate potential sources of heterogeneity among the included studies.

Of 4144 studies, 30 studies were included in this review. The overall pooled incidence of PED was 36% (95% confidence interval [CI] 29–44%). Subgroup analyses unveiled that the pooled incidence of PED, stratified by assessment time (≤ 3 h, 4–6 h, ≤ 24 h, and ≤ 48 h), was as follows: 31.0% (95% CI 8.0–59.0%), 28% (95% CI 22.0–35.0%), 41% (95% CI 33.0–49.0%), and 49.0% (95% CI 34.0–63.0%), respectively. When sample size was 100 <  N  ≤ 300, the PED incidence was more close to the overall PED incidence. Meta-regression analysis highlighted that sample size, assessment time and mean intubation time constituted the source of heterogeneity among the included studies.

The incidence of PED was high among ICU patients who underwent orotracheal intubation. ICU professionals should raise awareness about PED. In the meantime, it is important to develop guidelines or consensus on the most appropriate PED assessment time and assessment tools to accurately assess the incidence of PED.

Graphical abstract

Introduction

Mechanical ventilation is the most common technological support, being required by 20–40% of adult in ICU [ 1 ]. Orotracheal intubation is the primary way of mechanical ventilation in ICU, which can increase the risk of post-extubation dysphagia (PED) [ 2 , 3 ]. PED is any form of swallowing dysfunction that arises subsequent to extubation following endotracheal intubation, affecting the passage of food from the entrance to the stomach. The occurrence rate of PED within the ICU setting demonstrates considerable variation among different countries [ 4 ]. The incidence varied among countries, including 13.3–61.8% in the United States [ 5 , 6 ], 25.3–43.5% in France, and 23.2–56% in China [ 7 , 8 ], and the incidence ranging from 7 to 80% [ 9 , 10 ]. Significantly, PED standing out as a prominent complication encountered in this particular context. For instance, See et al. have elucidated that patients afflicted with PED face an 11-fold higher risk of aspiration compared to those without PED [ 11 ]. McIntyre et al. have underscored that patients afflicted with PED endure double the length of stay in the ICU and the overall hospitalization period when compared to patients without PED [ 10 ]. Furthermore, it is essential to note that PED emerged as an independent predictor of 28-day and 90-day mortality [ 12 ]. This high incidence of PED places an immense burden not only on patients but also on the broader healthcare system. Therefore, a systematic review and meta-analysis is necessary to explore the incidence of PED in ICU patients. A systematic review and meta-analysis conducted by McIntyre et al. reported that the incidence of PED was 41%, but the main outcomes of their partly included studies was aspiration [ 12 ]. Although aspiration and PED are closely related, not all aspiration is caused by dysphagia. The incidence of aspiration was 8.80%-88.00% in ICU [ 13 , 14 ], so the incidence of PED in that study may be overestimated. Moreover, there has been increasing literature on PED of ICU patients, and a new systematic review and meta-analysis is needed to obtain a more precise estimate of its incidence.

The incidence of PED may indeed vary depending on various covariates, including assessment time, mean intubation time, age and other relevant factors. First, there is no standard time for swallowing function assessment, which spans a range of intervals, including 3 h [ 6 , 9 , 12 ], 4–6 h [ 15 , 16 ], 24 h [ 17 , 18 , 19 ], 48 h [ 20 ], 7 days [ 21 ], and discharge [ 22 ], and the incidence of PED was 80% [ 9 ], 22.62% [ 15 ], 56.06% [ 18 ], and 35.91% [ 20 ], 22.06% [ 21 ], and 28.78% [ 22 ], respectively. Second, the PED is closely tied to the time of orotracheal intubation. Skoretz et al. have demonstrated that the overall incidence of PED in the ICU ranges from 3 to 4%. However, upon re-analysis of patients subjected to orotracheal intubation for more than 48 h, the PED incidence can surge as high as 51% [ 23 ]. Third, the choice of assessment tool to evaluate PED in ICU patients plays a pivotal role. These assessment tools may include Video-fluoroscopic Swallowing Study (VFSS), Fiberoptic Endoscopic Evaluation of Swallowing (FEES), Standardized Swallowing Assessment (SSA), Bedside Swallowing Evaluation (BSE), Gugging Swallowing Screen (GUSS), Post-Extubation Dysphagia Screening Tool (PEDS), Water Swallowing Test (WST) and other assessment tools. FEES and VFSS are considered the gold standards, with a detection rate of approximately 80% [ 9 ]. SSA and BSE exhibit detection rates of 22% and 62%, respectively [ 5 , 15 ]. Finally, age-related changes in laryngeal sensory and motor functions also influence PED risk [ 24 ]. Notably, there may not be a significant difference in the incidence of PED between elderly and young patients within the initial 48 h post-extubation. However, elderly patients exhibit a significantly slower rate of PED recovery compared to their younger counterparts over time (5.0 days vs 3.0 days; p  = 0.006) [ 5 ]. Therefore, it is necessary to explore the potential source of heterogeneity in the incidence of PED in ICU patients from such covariates.

The purpose of this study was to estimate the incidence of PED among ICU patients who underwent orotracheal intubation and investigate potential sources of heterogeneity through the application of subgroup analyses and meta-regression.

This systematic review and meta-analysis was conducted adhering to the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewers’ Manual and followed the principles of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 statement (PRISMA 2020) [ 25 ] (see Additional file 1: Table S1). In addition, it was registered with PROSPERO under the registration number CRD42022373300.

Eligibility criteria

The study’s eligibility criteria were established in accordance with the PICOS principle. Inclusion criteria as follows: population (P): adult patients (≥ 18 years old) admitted to the ICU who underwent orotracheal intubation. Exposure (E): undergoing orotracheal intubation. Outcome (O): PED. Study design (S): observational study (cohort, case–control, cross-sectional study). In studies where multiple articles were derived from the same sample, only the article providing the most detailed data was included. Patients at high risk of dysphagia (such as those with head and neck cancer, who have undergone head and neck surgery, patients receiving palliative care, esophageal dysfunction, stroke, esophageal cancer and Parkinson’s disease) were excluded. Studies were excluded if they exhibited incomplete original data or data that could not be extracted. Studied were also excluded if their sample sizes fell below 30 participants or the full text was inaccessible.

Data sources and search strategy

Our comprehensive search multiple databases, including Embase, PubMed, Web of Science, Cochrane Library, China National Knowledge Infrastructure (CNKI), Wanfang, China Science and Technology Journal Database (VIP), and SinoMed, with the search period encompassing inception to August 18, 2023. Search language was Chinese and English. The limited number of studies retrieved initially, primarily attributed to the inclusion of the qualifier “ICU” in the initial search, prompted us to broaden the scope of our literature search. Consequently, we refined the search strategy by reducing the emphasis on “ICU” during the search process. After a series of preliminary searches, we finalized the search strategy, which combined subject headings and free-text terms while employing Boolean operators to enhance search precision. In addition, a manual hand-search of the reference lists of selected articles was carried out to identify any supplementary studies not originally identified through the electronic search. For a detailed presentation of our complete search strategies across all databases, please refer to Additional file 1: Table S2.

Quality evaluation

The evaluation of the risk of bias within the included studies was conducted by two trained investigators. Cross-sectional study was evaluated by the Agency for Healthcare Research and Quality (AHRQ) tool [ 26 ], which consisted of 11 items, resulting in a maximum score of 11. Scores falling within the ranges of 0–3, 4–7, and 8–11 corresponded to studies of poor, moderate, and high quality, respectively. Cohort study was evaluated by the Newcastle–Ottawa Scale (NOS) tool [ 27 ], which comprised three dimensions and eight items, allowing for a star rating ranging from 2 to 9 stars. In this case, 0–4, 5–6, and 7–9 stars were indicative of study of poor, moderate, and high quality, respectively. Any discrepancies or disagreements between the investigators were resolved through discussion, when necessary, consultation with a third expert specializing in evidence-based practice methodology.

Study selection and data extraction

Bibliographic records were systematically exported into the NoteExpress database to facilitate the screening process and the removal of duplicate citations. Initial screening, based on titles and abstracts, was conducted by two reviewers who possessed specialized training in evidence-based knowledge. To ascertain whether the studies satisfied the predefined inclusion and exclusion criteria, the full texts of potentially relevant articles were acquired. In the event of disagreements between the two reviewers, resolution was achieved through discussion or, when necessary, by enlisting the input of a third reviewer for arbitration.

After confirming the included studies, the two authors independently extracted data from the each paper, including the first author, year of publication, country, study design, ICU type, mean patient age, mean intubation time, assessment time, assessment tool, evaluator, sample size, and the PED event. Any disparities during the process of extracted data were addressed through thorough discussion and consensus-building among the reviewers.

The outcomes of this review were as follows: (1) incidence of PED in patients with orotracheal intubation in the ICU; (2) sources of heterogeneity of PED in patients with orotracheal intubation in ICU.

Statistical analyses

Meta-analysis was conducted using the ‘meta prop’ function from the meta package within STATA/SE (version 15.0, StataCorp, TX, USA). To approximate the normal distribution of the data, incidence estimates were transformed using the “Freeman-Tukey Double Arcsine Transformation”. Heterogeneity was assessed using the I 2 statistic, and pooled analyses of PED were executed employing a random-effects model in the presence of significant heterogeneity ( I 2  ≥ 50%), with fixed-effects models utilized when heterogeneity was non-significant. A significance level of P  < 0.05 was established for all analyses.

Subgroup analyses were undertaken to investigate the potential impact of various factors, including assessment tool (gold standard, SSA, GUSS, BSE, PEDS, WST, and other assessment tools), year of publication (2000–2010, 2011–2015, 2016–2020, 2021–2023), study design (cross-sectional study and cohort study), study quality (moderate quality and high quality), assessment time (≤ 3 h, 4–6 h, ≤ 24 h, ≤ 48 h, and after 48 h post-extubation), mean intubation time (≤ 24 h, 48 – 168 h, and > 168 h), mean patient age (≤ 44 years, 45–59 years, 60–74 years), evaluator (nurses, speech-language pathologist), ICU type (Trauma ICU, Cardiac surgery ICU, Mixed medical and surgical ICU), and sample size ( N  ≤ 100, 100 <  N  ≤ 200, 200 <  N  ≤ 300, N  > 300) on the pooled estimate. In instances where no source of heterogeneity was identified in the subgroup analyse, we conducted meta-regression to further pinpoint the origins of heterogeneity, focusing on assessment time, mean intubation time, mean age, assessment tool, sample size, evaluator, ICU type, study design, study quality and year of publication. Sensitivity analysis by the “leave-one-out method” was employed to evaluate the random-effects model’s stability of the pooled incidence of PED. Publication bias was assessed by funnel plot and “Trim and Full” method.

Certainty of the evidence

The level of evidence was assessed using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) [ 28 ]. This tool classifies the certainty of evidence into four levels: very low, low, moderate, and high. “High quality” suggests that the actual effect is approximate to the estimate of the effect. On the other hand, “Very low quality” suggests that there is very little confidence in the effect estimate and the reported estimate may be substantially different from what was measured. Two reviewers judged the following aspects: risk of bias, inconsistency, imprecision, indirect evidence, and publication bias. Disagreements were resolved by consensus with the third reviewer.

Study selection

Out of the 4144 studies initially identified, 1280 duplicate studies were removed, and an additional 2864 studies that were deemed irrelevant were excluded based on title and abstract screening. Subsequently, a thorough examination of the full text was conducted for the remaining 122 studies. A manual hand-search of the reference lists of selected articles was 5 studies. Finally, 30 studies were chosen as they met the predetermined inclusion criteria for this systematic review and meta-analysis. The study selection flowchart is shown in Fig.  1 .

Flowchart of study selection

General characteristics of the included studies

The characteristics of the included studies are shown in Table  1 . The total sample size across these studies amounted to 6,228 participants. The earliest study in this review was conducted in 2003 [ 29 ], while the most recent study was conducted in 2023 [ 15 ], with 14 studies published after 2020. The study with the largest sample size was conducted by Schefold et al. [ 12 ], comprising 933 participants, while the study with the smallest sample size was carried out by Yılmaz et al. [ 19 ], including 40 participants. The methods employed to assess the incidence of PED exhibited variability among the studies. Specifically, one study employed VFSS [ 30 ], and four studies relied on FEES [ 9 , 29 , 31 , 32 ], and seven studies utilized SSA assessment tools [ 7 , 15 , 16 , 33 , 34 , 35 , 36 ]. Furthermore, six studies utilized BSE [ 5 , 10 , 17 , 37 , 38 , 39 ], two studies employed WST [ 12 , 40 ], two studies adopted PEDS [ 8 , 18 ], two studies utilized GUSS [ 19 , 41 ], and six studies employed other assessment tools [ 6 , 20 , 21 , 22 , 43 ,, 42 , 43 ] such as ASHA, FOIS, SSQ200, NPS-PED, MASA, and YSP.

Among all the studies, 23 studies recorded the assessment time for PED. Specifically, three studies assessed PED within ≤ 3 h post-extubation [ 6 , 9 , 12 ], four studies conducted assessments at 4–6 h post-extubation [ 15 , 16 , 33 , 36 ], nine studies assessed PED within ≤ 24 h post-extubation [ 7 , 8 , 17 , 18 , 19 , 31 , 34 , 40 , 41 ], three studies assessed PED within ≤ 48 h post-extubation [ 5 , 20 , 37 ], and four studies evaluated PED at > 24 h post-extubation [ 21 , 22 , 29 , 38 ]. In terms of study quality, eight of the included studies were categorized as high quality, while the remainder were deemed of moderate quality (see Additional 1: Tables S3, S4).

Meta-analysis results

Utilizing the random-effects model, the pooled incidence of PED was estimated to be 36% (95% CI 29.0%–44.0%, I 2  = 97.06%, p  < 0.001; Fig.  2 ), indicating a substantial degree of heterogeneity. Despite conducting additional subgroup analyses, the source of this high heterogeneity remained elusive. However, the results of the meta-regression analysis revealed that sample size ( p  < 0.001), assessment time ( p  = 0.027) and mean intubation time ( p  = 0.045) emerged as the significant factor contributing to the heterogeneity.

Overall pooled incidence of PED in ICU

Subgroup analysis of incidence

The subgroup analyses yielded the following incidence rates of PED based on assessment time post-extubation: the incidence of PED within 3 h post-extubation was 31% (95% CI 8.0–59.0), 4–6 h was 28% (95% CI 22.0–35.0, I 2  = 78.56%, p  < 0.001), within 24 h was 41% (95% CI 33.0–49.0, I 2  = 88.99%, p  < 0.001), and within 48 h was 49%. In addition, the incidence of PED beyond 24 h post-extubation was 37% (95% CI 23.0–52.0, I 2  = 91.73%, p  < 0.001) (Additional file 1: Fig. S1). Furthermore, when analyzing studies based on sample size ( N ), the overall incidence of PED was found 51% (95% CI 39.0–63.0, I 2  = 87.11%, p  < 0.001) for studies with N  < 100 participants, 37% (95% CI 31.0–43.0, I 2  = 84.74%, p  < 0.001) for studies with 100 <  N  ≤ 200 participants, 32% (95% CI 20.0–46.0, I 2  = 97.16%, p  < 0.001) for studies with 200 <  N  ≤ 300 participants, and 16% (95% CI 8.0–26.0, I 2  = 97.07%, p  < 0.001) for studies with N  > 300 participants (see Additional file 1: Fig. S2). In addition, further analyses were conducted based on assessment tool, mean intubation time, mean age, ICU type, evaluator, publication year, study design and study quality (see Additional file 1: Figs. S3–S11).

Results of meta-regression analysis

In the meta-regression analysis, we examined PED assessment time, sample size, assessment tools, mean intubation time, mean age, ICU type, evaluator, publication year, study design and study quality as potential covariates to identify the source of heterogeneity (Table  2 ). The univariate meta-regression analysis revealed a statistically significant correlation between incidence and sample size, assessment time and mean intubation time. Bubble plots of meta-regression of covariates were shown in Additional (see Additional file 1: Figs. S12–S22).

Sensitivity analysis

Sensitivity analysis showed that the incidence of PED ranged from 29 to 44% (see Additional file 1: Fig. S23). The marginal variance between these results and the pooled incidence was minimal, suggesting that the result of the pooled incidence being stable and reliable.

Publication bias

In our study, publication bias was detected by the funnel plot (see Additional file 1: Fig. S24). We found that the adjusted effect size was similar to the original effect size ( p  < 0.01) (see Additional file 1: Fig. S25).

The certainty of evidence was very low for all comparisons performed according to the GRADE rating [ 28 ]. Thus, it can be considered that the certainty of the evidence regarding the incidence of PED in this review is very low (Table  3 ).

This systematic review and meta-analysis aimed to estimate the incidence of PED in ICU patients. The study revealed an overall incidence of PED in ICU patients who underwent orotracheal intubation to be 36.0%. This incidence rate was comparable to the incidence of dysphagia resulting from stroke (36.30%) [ 45 ] and aligned with the incidence of PED observed in ICU patients (36%) [ 46 ]. However, it was slightly lower than the 41% reported in the meta-analysis conducted by McIntyre et al. [ 4 ]. The incidence of PED among ICU patients who underwent orotracheal intubation was high, ICU medical professionals, especially nurses should raise awareness about PED. However, the included studies were characterized by diversity and heterogeneity in assessment time and assessment tools signaled the need for obtaining consensus on a range of issues, including assessment time and assessment tools appropriate for ICU.

Sample size

This review identified sample size as a significant source of heterogeneity ( p  < 0.001). Notably, the incidence of PED demonstrated a gradual decrease as the sample size of the studies increased. In larger scale studies, such as those conducted by McIntyre et al. and Schefold et al., simpler assessment tools are employed, allowing for quick completion [ 10 , 12 ]. However, the reliability and validity of some of these tools remain unverified. Conversely, certain studies are conducted by highly trained professionals using the gold standard for PED assessment [ 9 , 29 , 31 ], which, while more accurate, is also time-consuming and costly [ 47 ]. In addition, some ICU patients, due to their unstable conditions, are unable to complete the gold standard assessment, resulting in relatively smaller sample sizes for these studies.

In statistics, sample size is intricately linked to result stability, and the confidence intervals for subgroups with N  < 100 in this study exhibited a wider range, this might diminish the result precision and lead to larger deviations from the true value. However, as the sample size increased to 100 <  N  ≤ 300, the confidence intervals narrowed in comparison to other subgroups. Consequently, when sample size was 100 <  N  ≤ 300, the PED incidence rates were more close with the overall PED rate. According to the central limit theorem, if the sampling method remains consistent, results obtained from larger samples are more stable and closer to the true value [ 48 , 49 ]. It is worth noting that the confidence intervals for the subgroup with N  > 300 in this study were wider and demonstrated a larger divergence from the total PED incidence. Therefore, in future studies, careful consideration of the sample size, based on the detection rate of the assessment tool used, is advisable to ensure both the stability and reliability of the results.

Mean intubation time

This review identified mean intubation time as a significant source of heterogeneity ( p  = 0.045). Variances in mean intubation time among ICU patients undergoing orotracheal intubation can lead to differing degrees of mucosal damage in the oropharynx and larynx [ 2 , 50 ], thereby resulting in varying incidence rates of PED. For instance, Malandraki et al. have reported that prolonged intubation is associated with more than a 12-fold increased risk of moderate/severe dysphagia compared to shorter intubation durations, and this effect is particularly pronounced among elderly patients [ 51 ]. Moreover, studies have demonstrated that ICU patients with extended orotracheal intubation periods leading to PED also exhibit diminished tongue and lip strength, protracted oral food transportation, slower swallowing, and muscle weakness in swallowing-related muscles [ 24 , 46 ]. In view of these findings, ICU medical professionals should routinely evaluate the need for orotracheal intubation, strive to minimize the duration of mechanical ventilation.

PED assessment time

This review identified assessment time as a significant source of heterogeneity ( P  = 0.027). It is important to note that there are currently no established guidelines recommending the optimal timing for the initial assessment of PED in ICU patients who have undergone orotracheal intubation. Consequently, the assessment time varies widely across studies, resulting in PED incidence rates ranging from 28 to 49% among subgroups. Interestingly, the incidence of PED assessed within ≤ 3 h post-extubation appeared lower than that assessed within ≤ 24 h and ≤ 48 h post-extubation. This difference may be attributed to the study by Schefold et al., which featured a shorter intubation duration [ 12 ]. Therefore, the incidence of PED assessed within ≤ 3 h post-extubation in ICU patients with orotracheal intubation may be underestimated. Moreover, it is essential to highlight that some ICU patients, particularly those with severe illnesses and extended intubation time, may face challenges in complying with post-extubation instructions provided by healthcare personnel. Paradoxically, this group of patients is at a higher risk of developing PED, subsequently increasing their susceptibility to post-extubation pneumonia [ 11 ]. ICU professionals should evaluate swallowing function in patients post-extubation; early identification of patients at risk for PED to reduce complications. If PED is identified, nurses should follow-up assessments at multiple time to obtain a thorough comprehension of PED recovery trajectory among PED patients, which can serve as a foundation for determining the timing of clinical interventions accurately.

PED assessment tools

Despite the subgroup analyses and meta-regression results indicating that PED assessment tools did not contribute to the observed heterogeneity, it is important to acknowledge the wide array of assessment tools employed across the studies included in this review. The study’s findings revealed that the results of the GUSS and BSE assessments were most closely aligned with the gold standard screening results. In contrast, the PEDS assessment results tended to be higher than those derived from the gold standard assessment. Furthermore, the results of other assessment tools generally yielded lower incidence rates of PED, possibly attributable to variations in specificity or sensitivity. FEES and VFSS assessments are recognized for their meticulous scrutiny of patients’ swallowing processes, including the detection of food residue and aspiration, which may not be as comprehensively addressed by other assessment methods [ 51 ]. Assessment tools such as BSE, SSA, GUSS, WST, and other clinical methods do not provide direct visualization of the swallowing process. Instead, assessors rely on the observation of overt clinical symptoms during the patient’s initial food or water intake to judge the presence of PED. However, these methods may overlook occult aspiration in patients, potentially resulting in an underestimation of PED incidence. In contrast, PEDS, which primarily assesses patients based on their medical history and plumbing symptoms without screening for drinking or swallowing, may overestimate PED incidence. Considering the varying strengths and limitations of existing assessment tools, ICU professionals select appropriate PED assessment tool based on the characteristics of the critically ill patient. Early and rapid identification of PED, before the use of more complex and expensive assessment tools, minimizes the occurrence of complications in patients.

Strengths and weaknesses

In this study, we conducted a comprehensive analysis of the incidence of PED in ICU patients who underwent orotracheal intubation across various subgroups, revealing a notable degree of heterogeneity among the included studies. In our study, we have expanded the search as much as possible and included a total of 30 papers after screening, half of which were published after 2020. There are several limitations that should be considered when interpreting the results of this meta-analysis. First, there was varied heterogeneity between methodological of the study and estimates of prevalence that may question the appropriateness of calculating pooled prevalence estimates. However, in order to address this heterogeneity, we addressed the heterogeneity with applying a random-effect model and conducting subgroup analysis and meta-regression to explore three sources of heterogeneity. Second, the overall quality of evidence for the incidence of PED was rated as low according to GRADE. Higher quality original studies on the incidence of PED should be performed in the future. As a result, the findings should be interpreted with caution in such cases.

In conclusion, our systematic review and meta-analysis revealed a high incidence of PED among ICU patients who underwent orotracheal intubation. It is also worth noting that the incidence of PED in the ICU may be underestimated. It is expected to increase awareness about the issue of PED among ICU patients. It will be important to develop guidelines or consensus on the most appropriate PED assessment time and assessment tools to accurately assess the incidence of PED.

Relevance to clinical practice

Each year, a substantial number of critically ill patients, ranging from 13 to 20 million, necessitate endotracheal intubation to sustain their lives. Patients undergoing orotracheal intubation are at heightened risk of developing PED. PED has been linked to prolonged hospital and ICU length of stay, increased rates of pneumonia, and all-cause mortality. Early identification of high-risk patients by clinical nurses is critical for reduce patient burden and adverse outcomes.

Early and multiple times assessment: Future investigations should early assess PED in clinical practice, especially within 6 h post-extubation. Furthermore, we suggest for follow-up assessments at multiple time to obtain a thorough comprehension of PED incidence and the recovery trajectory among ICU patients who have undergone orotracheal intubation.

Assessment tool: Considering the varying strengths and limitations of existing assessment tools, ICU professionals should carefully evaluate the characteristics of critically ill patients and select appropriate assessment tools, before the use of more complex and expensive assessment tools.

Routinely evaluate the need for orotracheal intubation: Healthcare professionals should routinely evaluate the need for orotracheal intubation, strive to minimize the duration of mechanical ventilation.

Availability of data and materials

All data related to the present systematic review and meta-analysis are available from the original study corresponding author on reasonable request.

Abbreviations

Confidence interval

• Intensive care unit

Post-extubation dysphagia

Sydney Swallow Questionnaire 200

Water swallowing test

Post-Extubation Dysphagia Screening Tool

Bedside swallow evaluation

The Yale swallow protocol

Mann Assessment of Swallowing Ability

American Speech-Language-Hearing Association

Video Fluoroscopic Swallowing Study

Fiberoptic endoscopic evaluation of swallowing

Gugging swallowing screen

Standardized Swallowing Assessment

Functional Oral Intake Scale

Nurse-performed screening for post-extubation dysphagia

Speech-language pathologists

Events of PED

Preferred Reporting Items for Systematic Reviews and Meta-analyses

International Prospective Register of Systematic Reviews

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Weixia Yu, Limi Dan, Jianzheng Cai, Yuyu Wang, Qingling Wang, Yingying Zhang & Xin Wang

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Weixia Yu, Limi Dan, Jianzheng Cai, and Yuyu Wang developed the original concept of this systematic review and meta-analysis. Weixia Yu, Limi Dan, Jianzheng Cai and Yuyu Wang contributed to the screening of eligible studies, data extraction, and data synthesis. Weixia Yu, Limi Dan, Jianzheng Cai, Yuyu Wang and Qingling Wang drafted the first version of the manuscript. Yingying Zhang, Qingling Wang and Xin Wang prepared the tables and figures. All the authors have edited and contributed for intellectual content. All the authors read and approved the final manuscript and take public responsibility for it.

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Additional file 1: Table S1. PRISMA 2020 Checklist. Table S2. Search strategy. Table S3. Quality evaluation results of the cohort studies. Table S4. Quality evaluation results of the cross-sectional study. Fig. S1. Subgroup analysis of the incidence of PED by assessment time. Fig. S2. Subgroup analysis of the incidence of PED by sample size. Fig. S3. Incidence of PED by assessment tool. Fig. S4. Incidence of PED by mean intubation time. Fig. S5 Incidence of PED by mean age. Fig. S6. Incidence of PED by ICU type. Fig. S7. Incidence of PED by evaluator. Fig. S8. Incidence of PED by year of publication. Fig. S9. Incidence of PED by study design. Fig. S10. Incidence of PED by quality of cohort study. Fig. S11. Incidence of PED by quality of Cross-sectional study. Fig. S12. Bubble plot of meta-regression result for evaluate time as a covariate. Fig. S13. Bubble plot of meta-regression result for sample size as a covariate. Fig. S14. Bubble plot of meta-regression result for assessment tool as a covariate. Fig. S15. Bubble plot of meta-regression result for mean intubation time as a covariate. Fig. S16. Bubble plot of meta-regression result for mean age as a covariate. Fig. S17. Bubble plot of meta-regression result for ICU type as a covariate. Fig. S18. Bubble plot of meta-regression result for evaluator as a covariate. Fig. S19. Bubble plot of meta-regression result for year of publication as a covariate. Fig. S20. Bubble plot of meta-regression result for study design as a covariate. Fig. S21. Bubble plot of meta-regression result for quality of cohort study as a covariate. Fig. S22. Bubble plot of meta-regression result for quality of cross-sectional study as a covariate. Fig. S23. Sensitivity analysis of PED. Fig. S24. Publication bias assessment plot. Fig. S25. Publication bias assessment plot. “Trim and Full test” method.

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Yu, W., Dan, L., Cai, J. et al. Incidence of post-extubation dysphagia among critical care patients undergoing orotracheal intubation: a systematic review and meta-analysis. Eur J Med Res 29 , 444 (2024). https://doi.org/10.1186/s40001-024-02024-x

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Knowledge mapping and evolution of research on older adults’ technology acceptance: a bibliometric study from 2013 to 2023

• Xianru Shang   ORCID: orcid.org/0009-0000-8906-3216 1 ,
• Zijian Liu 1 ,
• Chen Gong 1 ,
• Zhigang Hu 1 ,
• Yuexuan Wu 1 &
• Chengliang Wang   ORCID: orcid.org/0000-0003-2208-3508 2  

Humanities and Social Sciences Communications volume  11 , Article number:  1115 ( 2024 ) Cite this article

Metrics details

• Science, technology and society

The rapid expansion of information technology and the intensification of population aging are two prominent features of contemporary societal development. Investigating older adults’ acceptance and use of technology is key to facilitating their integration into an information-driven society. Given this context, the technology acceptance of older adults has emerged as a prioritized research topic, attracting widespread attention in the academic community. However, existing research remains fragmented and lacks a systematic framework. To address this gap, we employed bibliometric methods, utilizing the Web of Science Core Collection to conduct a comprehensive review of literature on older adults’ technology acceptance from 2013 to 2023. Utilizing VOSviewer and CiteSpace for data assessment and visualization, we created knowledge mappings of research on older adults’ technology acceptance. Our study employed multidimensional methods such as co-occurrence analysis, clustering, and burst analysis to: (1) reveal research dynamics, key journals, and domains in this field; (2) identify leading countries, their collaborative networks, and core research institutions and authors; (3) recognize the foundational knowledge system centered on theoretical model deepening, emerging technology applications, and research methods and evaluation, uncovering seminal literature and observing a shift from early theoretical and influential factor analyses to empirical studies focusing on individual factors and emerging technologies; (4) moreover, current research hotspots are primarily in the areas of factors influencing technology adoption, human-robot interaction experiences, mobile health management, and aging-in-place technology, highlighting the evolutionary context and quality distribution of research themes. Finally, we recommend that future research should deeply explore improvements in theoretical models, long-term usage, and user experience evaluation. Overall, this study presents a clear framework of existing research in the field of older adults’ technology acceptance, providing an important reference for future theoretical exploration and innovative applications.

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Introduction.

In contemporary society, the rapid development of information technology has been intricately intertwined with the intensifying trend of population aging. According to the latest United Nations forecast, by 2050, the global population aged 65 and above is expected to reach 1.6 billion, representing about 16% of the total global population (UN 2023 ). Given the significant challenges of global aging, there is increasing evidence that emerging technologies have significant potential to maintain health and independence for older adults in their home and healthcare environments (Barnard et al. 2013 ; Soar 2010 ; Vancea and Solé-Casals 2016 ). This includes, but is not limited to, enhancing residential safety with smart home technologies (Touqeer et al. 2021 ; Wang et al. 2022 ), improving living independence through wearable technologies (Perez et al. 2023 ), and increasing medical accessibility via telehealth services (Kruse et al. 2020 ). Technological innovations are redefining the lifestyles of older adults, encouraging a shift from passive to active participation (González et al. 2012 ; Mostaghel 2016 ). Nevertheless, the effective application and dissemination of technology still depends on user acceptance and usage intentions (Naseri et al. 2023 ; Wang et al. 2023a ; Xia et al. 2024 ; Yu et al. 2023 ). Particularly, older adults face numerous challenges in accepting and using new technologies. These challenges include not only physical and cognitive limitations but also a lack of technological experience, along with the influences of social and economic factors (Valk et al. 2018 ; Wilson et al. 2021 ).

User acceptance of technology is a significant focus within information systems (IS) research (Dai et al. 2024 ), with several models developed to explain and predict user behavior towards technology usage, including the Technology Acceptance Model (TAM) (Davis 1989 ), TAM2, TAM3, and the Unified Theory of Acceptance and Use of Technology (UTAUT) (Venkatesh et al. 2003 ). Older adults, as a group with unique needs, exhibit different behavioral patterns during technology acceptance than other user groups, and these uniquenesses include changes in cognitive abilities, as well as motivations, attitudes, and perceptions of the use of new technologies (Chen and Chan 2011 ). The continual expansion of technology introduces considerable challenges for older adults, rendering the understanding of their technology acceptance a research priority. Thus, conducting in-depth research into older adults’ acceptance of technology is critically important for enhancing their integration into the information society and improving their quality of life through technological advancements.

Reviewing relevant literature to identify research gaps helps further solidify the theoretical foundation of the research topic. However, many existing literature reviews primarily focus on the factors influencing older adults’ acceptance or intentions to use technology. For instance, Ma et al. ( 2021 ) conducted a comprehensive analysis of the determinants of older adults’ behavioral intentions to use technology; Liu et al. ( 2022 ) categorized key variables in studies of older adults’ technology acceptance, noting a shift in focus towards social and emotional factors; Yap et al. ( 2022 ) identified seven categories of antecedents affecting older adults’ use of technology from an analysis of 26 articles, including technological, psychological, social, personal, cost, behavioral, and environmental factors; Schroeder et al. ( 2023 ) extracted 119 influencing factors from 59 articles and further categorized these into six themes covering demographics, health status, and emotional awareness. Additionally, some studies focus on the application of specific technologies, such as Ferguson et al. ( 2021 ), who explored barriers and facilitators to older adults using wearable devices for heart monitoring, and He et al. ( 2022 ) and Baer et al. ( 2022 ), who each conducted in-depth investigations into the acceptance of social assistive robots and mobile nutrition and fitness apps, respectively. In summary, current literature reviews on older adults’ technology acceptance exhibit certain limitations. Due to the interdisciplinary nature and complex knowledge structure of this field, traditional literature reviews often rely on qualitative analysis, based on literature analysis and periodic summaries, which lack sufficient objectivity and comprehensiveness. Additionally, systematic research is relatively limited, lacking a macroscopic description of the research trajectory from a holistic perspective. Over the past decade, research on older adults’ technology acceptance has experienced rapid growth, with a significant increase in literature, necessitating the adoption of new methods to review and examine the developmental trends in this field (Chen 2006 ; Van Eck and Waltman 2010 ). Bibliometric analysis, as an effective quantitative research method, analyzes published literature through visualization, offering a viable approach to extracting patterns and insights from a large volume of papers, and has been widely applied in numerous scientific research fields (Achuthan et al. 2023 ; Liu and Duffy 2023 ). Therefore, this study will employ bibliometric methods to systematically analyze research articles related to older adults’ technology acceptance published in the Web of Science Core Collection from 2013 to 2023, aiming to understand the core issues and evolutionary trends in the field, and to provide valuable references for future related research. Specifically, this study aims to explore and answer the following questions:

RQ1: What are the research dynamics in the field of older adults’ technology acceptance over the past decade? What are the main academic journals and fields that publish studies related to older adults’ technology acceptance?

RQ2: How is the productivity in older adults’ technology acceptance research distributed among countries, institutions, and authors?

RQ3: What are the knowledge base and seminal literature in older adults’ technology acceptance research? How has the research theme progressed?

RQ4: What are the current hot topics and their evolutionary trajectories in older adults’ technology acceptance research? How is the quality of research distributed?

Methodology and materials

Research method.

In recent years, bibliometrics has become one of the crucial methods for analyzing literature reviews and is widely used in disciplinary and industrial intelligence analysis (Jing et al. 2023 ; Lin and Yu 2024a ; Wang et al. 2024a ; Xu et al. 2021 ). Bibliometric software facilitates the visualization analysis of extensive literature data, intuitively displaying the network relationships and evolutionary processes between knowledge units, and revealing the underlying knowledge structure and potential information (Chen et al. 2024 ; López-Robles et al. 2018 ; Wang et al. 2024c ). This method provides new insights into the current status and trends of specific research areas, along with quantitative evidence, thereby enhancing the objectivity and scientific validity of the research conclusions (Chen et al. 2023 ; Geng et al. 2024 ). VOSviewer and CiteSpace are two widely used bibliometric software tools in academia (Pan et al. 2018 ), recognized for their robust functionalities based on the JAVA platform. Although each has its unique features, combining these two software tools effectively constructs mapping relationships between literature knowledge units and clearly displays the macrostructure of the knowledge domains. Particularly, VOSviewer, with its excellent graphical representation capabilities, serves as an ideal tool for handling large datasets and precisely identifying the focal points and hotspots of research topics. Therefore, this study utilizes VOSviewer (version 1.6.19) and CiteSpace (version 6.1.R6), combined with in-depth literature analysis, to comprehensively examine and interpret the research theme of older adults’ technology acceptance through an integrated application of quantitative and qualitative methods.

Data source

Web of Science is a comprehensively recognized database in academia, featuring literature that has undergone rigorous peer review and editorial scrutiny (Lin and Yu 2024b ; Mongeon and Paul-Hus 2016 ; Pranckutė 2021 ). This study utilizes the Web of Science Core Collection as its data source, specifically including three major citation indices: Science Citation Index Expanded (SCIE), Social Sciences Citation Index (SSCI), and Arts & Humanities Citation Index (A&HCI). These indices encompass high-quality research literature in the fields of science, social sciences, and arts and humanities, ensuring the comprehensiveness and reliability of the data. We combined “older adults” with “technology acceptance” through thematic search, with the specific search strategy being: TS = (elder OR elderly OR aging OR ageing OR senile OR senior OR old people OR “older adult*”) AND TS = (“technology acceptance” OR “user acceptance” OR “consumer acceptance”). The time span of literature search is from 2013 to 2023, with the types limited to “Article” and “Review” and the language to “English”. Additionally, the search was completed by October 27, 2023, to avoid data discrepancies caused by database updates. The initial search yielded 764 journal articles. Given that searches often retrieve articles that are superficially relevant but actually non-compliant, manual screening post-search was essential to ensure the relevance of the literature (Chen et al. 2024 ). Through manual screening, articles significantly deviating from the research theme were eliminated and rigorously reviewed. Ultimately, this study obtained 500 valid sample articles from the Web of Science Core Collection. The complete PRISMA screening process is illustrated in Fig. 1 .

Presentation of the data culling process in detail.

Data standardization

Raw data exported from databases often contain multiple expressions of the same terminology (Nguyen and Hallinger 2020 ). To ensure the accuracy and consistency of data, it is necessary to standardize the raw data (Strotmann and Zhao 2012 ). This study follows the data standardization process proposed by Taskin and Al ( 2019 ), mainly executing the following operations:

(1) Standardization of author and institution names is conducted to address different name expressions for the same author. For instance, “Chan, Alan Hoi Shou” and “Chan, Alan H. S.” are considered the same author, and distinct authors with the same name are differentiated by adding identifiers. Diverse forms of institutional names are unified to address variations caused by name changes or abbreviations, such as standardizing “FRANKFURT UNIV APPL SCI” and “Frankfurt University of Applied Sciences,” as well as “Chinese University of Hong Kong” and “University of Hong Kong” to consistent names.

(2) Different expressions of journal names are unified. For example, “International Journal of Human-Computer Interaction” and “Int J Hum Comput Interact” are standardized to a single name. This ensures consistency in journal names and prevents misclassification of literature due to differing journal names. Additionally, it involves checking if the journals have undergone name changes in the past decade to prevent any impact on the analysis due to such changes.

(3) Keywords data are cleansed by removing words that do not directly pertain to specific research content (e.g., people, review), merging synonyms (e.g., “UX” and “User Experience,” “aging-in-place” and “aging in place”), and standardizing plural forms of keywords (e.g., “assistive technologies” and “assistive technology,” “social robots” and “social robot”). This reduces redundant information in knowledge mapping.

Bibliometric results and analysis

Distribution power (rq1), literature descriptive statistical analysis.

Table 1 presents a detailed descriptive statistical overview of the literature in the field of older adults’ technology acceptance. After deduplication using the CiteSpace software, this study confirmed a valid sample size of 500 articles. Authored by 1839 researchers, the documents encompass 792 research institutions across 54 countries and are published in 217 different academic journals. As of the search cutoff date, these articles have accumulated 13,829 citations, with an annual average of 1156 citations, and an average of 27.66 citations per article. The h-index, a composite metric of quantity and quality of scientific output (Kamrani et al. 2021 ), reached 60 in this study.

Trends in publications and disciplinary distribution

The number of publications and citations are significant indicators of the research field’s development, reflecting its continuity, attention, and impact (Ale Ebrahim et al. 2014 ). The ranking of annual publications and citations in the field of older adults’ technology acceptance studies is presented chronologically in Fig. 2A . The figure shows a clear upward trend in the amount of literature in this field. Between 2013 and 2017, the number of publications increased slowly and decreased in 2018. However, in 2019, the number of publications increased rapidly to 52 and reached a peak of 108 in 2022, which is 6.75 times higher than in 2013. In 2022, the frequency of document citations reached its highest point with 3466 citations, reflecting the widespread recognition and citation of research in this field. Moreover, the curve of the annual number of publications fits a quadratic function, with a goodness-of-fit R 2 of 0.9661, indicating that the number of future publications is expected to increase even more rapidly.

A Trends in trends in annual publications and citations (2013–2023). B Overlay analysis of the distribution of discipline fields.

Figure 2B shows that research on older adults’ technology acceptance involves the integration of multidisciplinary knowledge. According to Web of Science Categories, these 500 articles are distributed across 85 different disciplines. We have tabulated the top ten disciplines by publication volume (Table 2 ), which include Medical Informatics (75 articles, 15.00%), Health Care Sciences & Services (71 articles, 14.20%), Gerontology (61 articles, 12.20%), Public Environmental & Occupational Health (57 articles, 11.40%), and Geriatrics & Gerontology (52 articles, 10.40%), among others. The high output in these disciplines reflects the concentrated global academic interest in this comprehensive research topic. Additionally, interdisciplinary research approaches provide diverse perspectives and a solid theoretical foundation for studies on older adults’ technology acceptance, also paving the way for new research directions.

Knowledge flow analysis

A dual-map overlay is a CiteSpace map superimposed on top of a base map, which shows the interrelationships between journals in different domains, representing the publication and citation activities in each domain (Chen and Leydesdorff 2014 ). The overlay map reveals the link between the citing domain (on the left side) and the cited domain (on the right side), reflecting the knowledge flow of the discipline at the journal level (Leydesdorff and Rafols 2012 ). We utilize the in-built Z-score algorithm of the software to cluster the graph, as shown in Fig. 3 .

The left side shows the citing journal, and the right side shows the cited journal.

Figure 3 shows the distribution of citing journals clusters for older adults’ technology acceptance on the left side, while the right side refers to the main cited journals clusters. Two knowledge flow citation trajectories were obtained; they are presented by the color of the cited regions, and the thickness of these trajectories is proportional to the Z-score scaled frequency of citations (Chen et al. 2014 ). Within the cited regions, the most popular fields with the most records covered are “HEALTH, NURSING, MEDICINE” and “PSYCHOLOGY, EDUCATION, SOCIAL”, and the elliptical aspect ratio of these two fields stands out. Fields have prominent elliptical aspect ratios, highlighting their significant influence on older adults’ technology acceptance research. Additionally, the major citation trajectories originate in these two areas and progress to the frontier research area of “PSYCHOLOGY, EDUCATION, HEALTH”. It is worth noting that the citation trajectory from “PSYCHOLOGY, EDUCATION, SOCIAL” has a significant Z-value (z = 6.81), emphasizing the significance and impact of this development path. In the future, “MATHEMATICS, SYSTEMS, MATHEMATICAL”, “MOLECULAR, BIOLOGY, IMMUNOLOGY”, and “NEUROLOGY, SPORTS, OPHTHALMOLOGY” may become emerging fields. The fields of “MEDICINE, MEDICAL, CLINICAL” may be emerging areas of cutting-edge research.

Main research journals analysis

Table 3 provides statistics for the top ten journals by publication volume in the field of older adults’ technology acceptance. Together, these journals have published 137 articles, accounting for 27.40% of the total publications, indicating that there is no highly concentrated core group of journals in this field, with publications being relatively dispersed. Notably, Computers in Human Behavior , Journal of Medical Internet Research , and International Journal of Human-Computer Interaction each lead with 15 publications. In terms of citation metrics, International Journal of Medical Informatics and Computers in Human Behavior stand out significantly, with the former accumulating a total of 1,904 citations, averaging 211.56 citations per article, and the latter totaling 1,449 citations, with an average of 96.60 citations per article. These figures emphasize the academic authority and widespread impact of these journals within the research field.

Research power (RQ2)

Countries and collaborations analysis.

The analysis revealed the global research pattern for country distribution and collaboration (Chen et al. 2019 ). Figure 4A shows the network of national collaborations on older adults’ technology acceptance research. The size of the bubbles represents the amount of publications in each country, while the thickness of the connecting lines expresses the closeness of the collaboration among countries. Generally, this research subject has received extensive international attention, with China and the USA publishing far more than any other countries. China has established notable research collaborations with the USA, UK and Malaysia in this field, while other countries have collaborations, but the closeness is relatively low and scattered. Figure 4B shows the annual publication volume dynamics of the top ten countries in terms of total publications. Since 2017, China has consistently increased its annual publications, while the USA has remained relatively stable. In 2019, the volume of publications in each country increased significantly, this was largely due to the global outbreak of the COVID-19 pandemic, which has led to increased reliance on information technology among the elderly for medical consultations, online socialization, and health management (Sinha et al. 2021 ). This phenomenon has led to research advances in technology acceptance among older adults in various countries. Table 4 shows that the top ten countries account for 93.20% of the total cumulative number of publications, with each country having published more than 20 papers. Among these ten countries, all of them except China are developed countries, indicating that the research field of older adults’ technology acceptance has received general attention from developed countries. Currently, China and the USA were the leading countries in terms of publications with 111 and 104 respectively, accounting for 22.20% and 20.80%. The UK, Germany, Italy, and the Netherlands also made significant contributions. The USA and China ranked first and second in terms of the number of citations, while the Netherlands had the highest average citations, indicating the high impact and quality of its research. The UK has shown outstanding performance in international cooperation, while the USA highlights its significant academic influence in this field with the highest h-index value.

A National collaboration network. B Annual volume of publications in the top 10 countries.

Institutions and authors analysis

Analyzing the number of publications and citations can reveal an institution’s or author’s research strength and influence in a particular research area (Kwiek 2021 ). Tables 5 and 6 show the statistics of the institutions and authors whose publication counts are in the top ten, respectively. As shown in Table 5 , higher education institutions hold the main position in this research field. Among the top ten institutions, City University of Hong Kong and The University of Hong Kong from China lead with 14 and 9 publications, respectively. City University of Hong Kong has the highest h-index, highlighting its significant influence in the field. It is worth noting that Tilburg University in the Netherlands is not among the top five in terms of publications, but the high average citation count (130.14) of its literature demonstrates the high quality of its research.

After analyzing the authors’ output using Price’s Law (Redner 1998 ), the highest number of publications among the authors counted ( n  = 10) defines a publication threshold of 3 for core authors in this research area. As a result of quantitative screening, a total of 63 core authors were identified. Table 6 shows that Chen from Zhejiang University, China, Ziefle from RWTH Aachen University, Germany, and Rogers from Macquarie University, Australia, were the top three authors in terms of the number of publications, with 10, 9, and 8 articles, respectively. In terms of average citation rate, Peek and Wouters, both scholars from the Netherlands, have significantly higher rates than other scholars, with 183.2 and 152.67 respectively. This suggests that their research is of high quality and widely recognized. Additionally, Chen and Rogers have high h-indices in this field.

Knowledge base and theme progress (RQ3)

Research knowledge base.

Co-citation relationships occur when two documents are cited together (Zhang and Zhu 2022 ). Co-citation mapping uses references as nodes to represent the knowledge base of a subject area (Min et al. 2021). Figure 5A illustrates co-occurrence mapping in older adults’ technology acceptance research, where larger nodes signify higher co-citation frequencies. Co-citation cluster analysis can be used to explore knowledge structure and research boundaries (Hota et al. 2020 ; Shiau et al. 2023 ). The co-citation clustering mapping of older adults’ technology acceptance research literature (Fig. 5B ) shows that the Q value of the clustering result is 0.8129 (>0.3), and the average value of the weight S is 0.9391 (>0.7), indicating that the clusters are uniformly distributed with a significant and credible structure. This further proves that the boundaries of the research field are clear and there is significant differentiation in the field. The figure features 18 cluster labels, each associated with thematic color blocks corresponding to different time slices. Highlighted emerging research themes include #2 Smart Home Technology, #7 Social Live, and #10 Customer Service. Furthermore, the clustering labels extracted are primarily classified into three categories: theoretical model deepening, emerging technology applications, research methods and evaluation, as detailed in Table 7 .

A Co-citation analysis of references. B Clustering network analysis of references.

Seminal literature analysis

The top ten nodes in terms of co-citation frequency were selected for further analysis. Table 8 displays the corresponding node information. Studies were categorized into four main groups based on content analysis. (1) Research focusing on specific technology usage by older adults includes studies by Peek et al. ( 2014 ), Ma et al. ( 2016 ), Hoque and Sorwar ( 2017 ), and Li et al. ( 2019 ), who investigated the factors influencing the use of e-technology, smartphones, mHealth, and smart wearables, respectively. (2) Concerning the development of theoretical models of technology acceptance, Chen and Chan ( 2014 ) introduced the Senior Technology Acceptance Model (STAM), and Macedo ( 2017 ) analyzed the predictive power of UTAUT2 in explaining older adults’ intentional behaviors and information technology usage. (3) In exploring older adults’ information technology adoption and behavior, Lee and Coughlin ( 2015 ) emphasized that the adoption of technology by older adults is a multifactorial process that includes performance, price, value, usability, affordability, accessibility, technical support, social support, emotion, independence, experience, and confidence. Yusif et al. ( 2016 ) conducted a literature review examining the key barriers affecting older adults’ adoption of assistive technology, including factors such as privacy, trust, functionality/added value, cost, and stigma. (4) From the perspective of research into older adults’ technology acceptance, Mitzner et al. ( 2019 ) assessed the long-term usage of computer systems designed for the elderly, whereas Guner and Acarturk ( 2020 ) compared information technology usage and acceptance between older and younger adults. The breadth and prevalence of this literature make it a vital reference for researchers in the field, also providing new perspectives and inspiration for future research directions.

Research thematic progress

Burst citation is a node of literature that guides the sudden change in dosage, which usually represents a prominent development or major change in a particular field, with innovative and forward-looking qualities. By analyzing the emergent literature, it is often easy to understand the dynamics of the subject area, mapping the emerging thematic change (Chen et al. 2022 ). Figure 6 shows the burst citation mapping in the field of older adults’ technology acceptance research, with burst citations represented by red nodes (Fig. 6A ). For the ten papers with the highest burst intensity (Fig. 6B ), this study will conduct further analysis in conjunction with literature review.

A Burst detection of co-citation. B The top 10 references with the strongest citation bursts.

As shown in Fig. 6 , Mitzner et al. ( 2010 ) broke the stereotype that older adults are fearful of technology, found that they actually have positive attitudes toward technology, and emphasized the centrality of ease of use and usefulness in the process of technology acceptance. This finding provides an important foundation for subsequent research. During the same period, Wagner et al. ( 2010 ) conducted theory-deepening and applied research on technology acceptance among older adults. The research focused on older adults’ interactions with computers from the perspective of Social Cognitive Theory (SCT). This expanded the understanding of technology acceptance, particularly regarding the relationship between behavior, environment, and other SCT elements. In addition, Pan and Jordan-Marsh ( 2010 ) extended the TAM to examine the interactions among predictors of perceived usefulness, perceived ease of use, subjective norm, and convenience conditions when older adults use the Internet, taking into account the moderating roles of gender and age. Heerink et al. ( 2010 ) adapted and extended the UTAUT, constructed a technology acceptance model specifically designed for older users’ acceptance of assistive social agents, and validated it using controlled experiments and longitudinal data, explaining intention to use by combining functional assessment and social interaction variables.

Then the research theme shifted to an in-depth analysis of the factors influencing technology acceptance among older adults. Two papers with high burst strengths emerged during this period: Peek et al. ( 2014 ) (Strength = 12.04), Chen and Chan ( 2014 ) (Strength = 9.81). Through a systematic literature review and empirical study, Peek STM and Chen K, among others, identified multidimensional factors that influence older adults’ technology acceptance. Peek et al. ( 2014 ) analyzed literature on the acceptance of in-home care technology among older adults and identified six factors that influence their acceptance: concerns about technology, expected benefits, technology needs, technology alternatives, social influences, and older adult characteristics, with a focus on differences between pre- and post-implementation factors. Chen and Chan ( 2014 ) constructed the STAM by administering a questionnaire to 1012 older adults and adding eight important factors, including technology anxiety, self-efficacy, cognitive ability, and physical function, based on the TAM. This enriches the theoretical foundation of the field. In addition, Braun ( 2013 ) highlighted the role of perceived usefulness, trust in social networks, and frequency of Internet use in older adults’ use of social networks, while ease of use and social pressure were not significant influences. These findings contribute to the study of older adults’ technology acceptance within specific technology application domains.

Recent research has focused on empirical studies of personal factors and emerging technologies. Ma et al. ( 2016 ) identified key personal factors affecting smartphone acceptance among older adults through structured questionnaires and face-to-face interviews with 120 participants. The study found that cost, self-satisfaction, and convenience were important factors influencing perceived usefulness and ease of use. This study offers empirical evidence to comprehend the main factors that drive smartphone acceptance among Chinese older adults. Additionally, Yusif et al. ( 2016 ) presented an overview of the obstacles that hinder older adults’ acceptance of assistive technologies, focusing on privacy, trust, and functionality.

In summary, research on older adults’ technology acceptance has shifted from early theoretical deepening and analysis of influencing factors to empirical studies in the areas of personal factors and emerging technologies, which have greatly enriched the theoretical basis of older adults’ technology acceptance and provided practical guidance for the design of emerging technology products.

Research hotspots, evolutionary trends, and quality distribution (RQ4)

Core keywords analysis.

Keywords concise the main idea and core of the literature, and are a refined summary of the research content (Huang et al. 2021 ). In CiteSpace, nodes with a centrality value greater than 0.1 are considered to be critical nodes. Analyzing keywords with high frequency and centrality helps to visualize the hot topics in the research field (Park et al. 2018 ). The merged keywords were imported into CiteSpace, and the top 10 keywords were counted and sorted by frequency and centrality respectively, as shown in Table 9 . The results show that the keyword “TAM” has the highest frequency (92), followed by “UTAUT” (24), which reflects that the in-depth study of the existing technology acceptance model and its theoretical expansion occupy a central position in research related to older adults’ technology acceptance. Furthermore, the terms ‘assistive technology’ and ‘virtual reality’ are both high-frequency and high-centrality terms (frequency = 17, centrality = 0.10), indicating that the research on assistive technology and virtual reality for older adults is the focus of current academic attention.

Research hotspots analysis

Using VOSviewer for keyword co-occurrence analysis organizes keywords into groups or clusters based on their intrinsic connections and frequencies, clearly highlighting the research field’s hot topics. The connectivity among keywords reveals correlations between different topics. To ensure accuracy, the analysis only considered the authors’ keywords. Subsequently, the keywords were filtered by setting the keyword frequency to 5 to obtain the keyword clustering map of the research on older adults’ technology acceptance research keyword clustering mapping (Fig. 7 ), combined with the keyword co-occurrence clustering network (Fig. 7A ) and the corresponding density situation (Fig. 7B ) to make a detailed analysis of the following four groups of clustered themes.

A Co-occurrence clustering network. B Keyword density.

Cluster #1—Research on the factors influencing technology adoption among older adults is a prominent topic, covering age, gender, self-efficacy, attitude, and and intention to use (Berkowsky et al. 2017 ; Wang et al. 2017 ). It also examined older adults’ attitudes towards and acceptance of digital health technologies (Ahmad and Mozelius, 2022 ). Moreover, the COVID-19 pandemic, significantly impacting older adults’ technology attitudes and usage, has underscored the study’s importance and urgency. Therefore, it is crucial to conduct in-depth studies on how older adults accept, adopt, and effectively use new technologies, to address their needs and help them overcome the digital divide within digital inclusion. This will improve their quality of life and healthcare experiences.

Cluster #2—Research focuses on how older adults interact with assistive technologies, especially assistive robots and health monitoring devices, emphasizing trust, usability, and user experience as crucial factors (Halim et al. 2022 ). Moreover, health monitoring technologies effectively track and manage health issues common in older adults, like dementia and mild cognitive impairment (Lussier et al. 2018 ; Piau et al. 2019 ). Interactive exercise games and virtual reality have been deployed to encourage more physical and cognitive engagement among older adults (Campo-Prieto et al. 2021 ). Personalized and innovative technology significantly enhances older adults’ participation, improving their health and well-being.

Cluster #3—Optimizing health management for older adults using mobile technology. With the development of mobile health (mHealth) and health information technology, mobile applications, smartphones, and smart wearable devices have become effective tools to help older users better manage chronic conditions, conduct real-time health monitoring, and even receive telehealth services (Dupuis and Tsotsos 2018 ; Olmedo-Aguirre et al. 2022 ; Kim et al. 2014 ). Additionally, these technologies can mitigate the problem of healthcare resource inequality, especially in developing countries. Older adults’ acceptance and use of these technologies are significantly influenced by their behavioral intentions, motivational factors, and self-management skills. These internal motivational factors, along with external factors, jointly affect older adults’ performance in health management and quality of life.

Cluster #4—Research on technology-assisted home care for older adults is gaining popularity. Environmentally assisted living enhances older adults’ independence and comfort at home, offering essential support and security. This has a crucial impact on promoting healthy aging (Friesen et al. 2016 ; Wahlroos et al. 2023 ). The smart home is a core application in this field, providing a range of solutions that facilitate independent living for the elderly in a highly integrated and user-friendly manner. This fulfills different dimensions of living and health needs (Majumder et al. 2017 ). Moreover, eHealth offers accurate and personalized health management and healthcare services for older adults (Delmastro et al. 2018 ), ensuring their needs are met at home. Research in this field often employs qualitative methods and structural equation modeling to fully understand older adults’ needs and experiences at home and analyze factors influencing technology adoption.

Evolutionary trends analysis

To gain a deeper understanding of the evolutionary trends in research hotspots within the field of older adults’ technology acceptance, we conducted a statistical analysis of the average appearance times of keywords, using CiteSpace to generate the time-zone evolution mapping (Fig. 8 ) and burst keywords. The time-zone mapping visually displays the evolution of keywords over time, intuitively reflecting the frequency and initial appearance of keywords in research, commonly used to identify trends in research topics (Jing et al. 2024a ; Kumar et al. 2021 ). Table 10 lists the top 15 keywords by burst strength, with the red sections indicating high-frequency citations and their burst strength in specific years. These burst keywords reveal the focus and trends of research themes over different periods (Kleinberg 2002 ). Combining insights from the time-zone mapping and burst keywords provides more objective and accurate research insights (Wang et al. 2023b ).

Reflecting the frequency and time of first appearance of keywords in the study.

An integrated analysis of Fig. 8 and Table 10 shows that early research on older adults’ technology acceptance primarily focused on factors such as perceived usefulness, ease of use, and attitudes towards information technology, including their use of computers and the internet (Pan and Jordan-Marsh 2010 ), as well as differences in technology use between older adults and other age groups (Guner and Acarturk 2020 ). Subsequently, the research focus expanded to improving the quality of life for older adults, exploring how technology can optimize health management and enhance the possibility of independent living, emphasizing the significant role of technology in improving the quality of life for the elderly. With ongoing technological advancements, recent research has shifted towards areas such as “virtual reality,” “telehealth,” and “human-robot interaction,” with a focus on the user experience of older adults (Halim et al. 2022 ). The appearance of keywords such as “physical activity” and “exercise” highlights the value of technology in promoting physical activity and health among older adults. This phase of research tends to make cutting-edge technology genuinely serve the practical needs of older adults, achieving its widespread application in daily life. Additionally, research has focused on expanding and quantifying theoretical models of older adults’ technology acceptance, involving keywords such as “perceived risk”, “validation” and “UTAUT”.

In summary, from 2013 to 2023, the field of older adults’ technology acceptance has evolved from initial explorations of influencing factors, to comprehensive enhancements in quality of life and health management, and further to the application and deepening of theoretical models and cutting-edge technologies. This research not only reflects the diversity and complexity of the field but also demonstrates a comprehensive and in-depth understanding of older adults’ interactions with technology across various life scenarios and needs.

Research quality distribution

To reveal the distribution of research quality in the field of older adults’ technology acceptance, a strategic diagram analysis is employed to calculate and illustrate the internal development and interrelationships among various research themes (Xie et al. 2020 ). The strategic diagram uses Centrality as the X-axis and Density as the Y-axis to divide into four quadrants, where the X-axis represents the strength of the connection between thematic clusters and other themes, with higher values indicating a central position in the research field; the Y-axis indicates the level of development within the thematic clusters, with higher values denoting a more mature and widely recognized field (Li and Zhou 2020 ).

Through cluster analysis and manual verification, this study categorized 61 core keywords (Frequency ≥5) into 11 thematic clusters. Subsequently, based on the keywords covered by each thematic cluster, the research themes and their directions for each cluster were summarized (Table 11 ), and the centrality and density coordinates for each cluster were precisely calculated (Table 12 ). Finally, a strategic diagram of the older adults’ technology acceptance research field was constructed (Fig. 9 ). Based on the distribution of thematic clusters across the quadrants in the strategic diagram, the structure and developmental trends of the field were interpreted.

Classification and visualization of theme clusters based on density and centrality.

As illustrated in Fig. 9 , (1) the theme clusters of #3 Usage Experience and #4 Assisted Living Technology are in the first quadrant, characterized by high centrality and density. Their internal cohesion and close links with other themes indicate their mature development, systematic research content or directions have been formed, and they have a significant influence on other themes. These themes play a central role in the field of older adults’ technology acceptance and have promising prospects. (2) The theme clusters of #6 Smart Devices, #9 Theoretical Models, and #10 Mobile Health Applications are in the second quadrant, with higher density but lower centrality. These themes have strong internal connections but weaker external links, indicating that these three themes have received widespread attention from researchers and have been the subject of related research, but more as self-contained systems and exhibit independence. Therefore, future research should further explore in-depth cooperation and cross-application with other themes. (3) The theme clusters of #7 Human-Robot Interaction, #8 Characteristics of the Elderly, and #11 Research Methods are in the third quadrant, with lower centrality and density. These themes are loosely connected internally and have weak links with others, indicating their developmental immaturity. Compared to other topics, they belong to the lower attention edge and niche themes, and there is a need for further investigation. (4) The theme clusters of #1 Digital Healthcare Technology, #2 Psychological Factors, and #5 Socio-Cultural Factors are located in the fourth quadrant, with high centrality but low density. Although closely associated with other research themes, the internal cohesion within these clusters is relatively weak. This suggests that while these themes are closely linked to other research areas, their own development remains underdeveloped, indicating a core immaturity. Nevertheless, these themes are crucial within the research domain of elderly technology acceptance and possess significant potential for future exploration.

Discussion on distribution power (RQ1)

Over the past decade, academic interest and influence in the area of older adults’ technology acceptance have significantly increased. This trend is evidenced by a quantitative analysis of publication and citation volumes, particularly noticeable in 2019 and 2022, where there was a substantial rise in both metrics. The rise is closely linked to the widespread adoption of emerging technologies such as smart homes, wearable devices, and telemedicine among older adults. While these technologies have enhanced their quality of life, they also pose numerous challenges, sparking extensive research into their acceptance, usage behaviors, and influencing factors among the older adults (Pirzada et al. 2022 ; Garcia Reyes et al. 2023 ). Furthermore, the COVID-19 pandemic led to a surge in technology demand among older adults, especially in areas like medical consultation, online socialization, and health management, further highlighting the importance and challenges of technology. Health risks and social isolation have compelled older adults to rely on technology for daily activities, accelerating its adoption and application within this demographic. This phenomenon has made technology acceptance a critical issue, driving societal and academic focus on the study of technology acceptance among older adults.

The flow of knowledge at the level of high-output disciplines and journals, along with the primary publishing outlets, indicates the highly interdisciplinary nature of research into older adults’ technology acceptance. This reflects the complexity and breadth of issues related to older adults’ technology acceptance, necessitating the integration of multidisciplinary knowledge and approaches. Currently, research is primarily focused on medical health and human-computer interaction, demonstrating academic interest in improving health and quality of life for older adults and addressing the urgent needs related to their interactions with technology. In the field of medical health, research aims to provide advanced and innovative healthcare technologies and services to meet the challenges of an aging population while improving the quality of life for older adults (Abdi et al. 2020 ; Wilson et al. 2021 ). In the field of human-computer interaction, research is focused on developing smarter and more user-friendly interaction models to meet the needs of older adults in the digital age, enabling them to actively participate in social activities and enjoy a higher quality of life (Sayago, 2019 ). These studies are crucial for addressing the challenges faced by aging societies, providing increased support and opportunities for the health, welfare, and social participation of older adults.

Discussion on research power (RQ2)

This study analyzes leading countries and collaboration networks, core institutions and authors, revealing the global research landscape and distribution of research strength in the field of older adults’ technology acceptance, and presents quantitative data on global research trends. From the analysis of country distribution and collaborations, China and the USA hold dominant positions in this field, with developed countries like the UK, Germany, Italy, and the Netherlands also excelling in international cooperation and research influence. The significant investment in technological research and the focus on the technological needs of older adults by many developed countries reflect their rapidly aging societies, policy support, and resource allocation.

China is the only developing country that has become a major contributor in this field, indicating its growing research capabilities and high priority given to aging societies and technological innovation. Additionally, China has close collaborations with countries such as USA, the UK, and Malaysia, driven not only by technological research needs but also by shared challenges and complementarities in aging issues among these nations. For instance, the UK has extensive experience in social welfare and aging research, providing valuable theoretical guidance and practical experience. International collaborations, aimed at addressing the challenges of aging, integrate the strengths of various countries, advancing in-depth and widespread development in the research of technology acceptance among older adults.

At the institutional and author level, City University of Hong Kong leads in publication volume, with research teams led by Chan and Chen demonstrating significant academic activity and contributions. Their research primarily focuses on older adults’ acceptance and usage behaviors of various technologies, including smartphones, smart wearables, and social robots (Chen et al. 2015 ; Li et al. 2019 ; Ma et al. 2016 ). These studies, targeting specific needs and product characteristics of older adults, have developed new models of technology acceptance based on existing frameworks, enhancing the integration of these technologies into their daily lives and laying a foundation for further advancements in the field. Although Tilburg University has a smaller publication output, it holds significant influence in the field of older adults’ technology acceptance. Particularly, the high citation rate of Peek’s studies highlights their excellence in research. Peek extensively explored older adults’ acceptance and usage of home care technologies, revealing the complexity and dynamics of their technology use behaviors. His research spans from identifying systemic influencing factors (Peek et al. 2014 ; Peek et al. 2016 ), emphasizing familial impacts (Luijkx et al. 2015 ), to constructing comprehensive models (Peek et al. 2017 ), and examining the dynamics of long-term usage (Peek et al. 2019 ), fully reflecting the evolving technology landscape and the changing needs of older adults. Additionally, the ongoing contributions of researchers like Ziefle, Rogers, and Wouters in the field of older adults’ technology acceptance demonstrate their research influence and leadership. These researchers have significantly enriched the knowledge base in this area with their diverse perspectives. For instance, Ziefle has uncovered the complex attitudes of older adults towards technology usage, especially the trade-offs between privacy and security, and how different types of activities affect their privacy needs (Maidhof et al. 2023 ; Mujirishvili et al. 2023 ; Schomakers and Ziefle 2023 ; Wilkowska et al. 2022 ), reflecting a deep exploration and ongoing innovation in the field of older adults’ technology acceptance.

Discussion on knowledge base and thematic progress (RQ3)

Through co-citation analysis and systematic review of seminal literature, this study reveals the knowledge foundation and thematic progress in the field of older adults’ technology acceptance. Co-citation networks and cluster analyses illustrate the structural themes of the research, delineating the differentiation and boundaries within this field. Additionally, burst detection analysis offers a valuable perspective for understanding the thematic evolution in the field of technology acceptance among older adults. The development and innovation of theoretical models are foundational to this research. Researchers enhance the explanatory power of constructed models by deepening and expanding existing technology acceptance theories to address theoretical limitations. For instance, Heerink et al. ( 2010 ) modified and expanded the UTAUT model by integrating functional assessment and social interaction variables to create the almere model. This model significantly enhances the ability to explain the intentions of older users in utilizing assistive social agents and improves the explanation of actual usage behaviors. Additionally, Chen and Chan ( 2014 ) extended the TAM to include age-related health and capability features of older adults, creating the STAM, which substantially improves predictions of older adults’ technology usage behaviors. Personal attributes, health and capability features, and facilitating conditions have a direct impact on technology acceptance. These factors more effectively predict older adults’ technology usage behaviors than traditional attitudinal factors.

With the advancement of technology and the application of emerging technologies, new research topics have emerged, increasingly focusing on older adults’ acceptance and use of these technologies. Prior to this, the study by Mitzner et al. ( 2010 ) challenged the stereotype of older adults’ conservative attitudes towards technology, highlighting the central roles of usability and usefulness in the technology acceptance process. This discovery laid an important foundation for subsequent research. Research fields such as “smart home technology,” “social life,” and “customer service” are emerging, indicating a shift in focus towards the practical and social applications of technology in older adults’ lives. Research not only focuses on the technology itself but also on how these technologies integrate into older adults’ daily lives and how they can improve the quality of life through technology. For instance, studies such as those by Ma et al. ( 2016 ), Hoque and Sorwar ( 2017 ), and Li et al. ( 2019 ) have explored factors influencing older adults’ use of smartphones, mHealth, and smart wearable devices.

Furthermore, the diversification of research methodologies and innovation in evaluation techniques, such as the use of mixed methods, structural equation modeling (SEM), and neural network (NN) approaches, have enhanced the rigor and reliability of the findings, enabling more precise identification of the factors and mechanisms influencing technology acceptance. Talukder et al. ( 2020 ) employed an effective multimethodological strategy by integrating SEM and NN to leverage the complementary strengths of both approaches, thus overcoming their individual limitations and more accurately analyzing and predicting older adults’ acceptance of wearable health technologies (WHT). SEM is utilized to assess the determinants’ impact on the adoption of WHT, while neural network models validate SEM outcomes and predict the significance of key determinants. This combined approach not only boosts the models’ reliability and explanatory power but also provides a nuanced understanding of the motivations and barriers behind older adults’ acceptance of WHT, offering deep research insights.

Overall, co-citation analysis of the literature in the field of older adults’ technology acceptance has uncovered deeper theoretical modeling and empirical studies on emerging technologies, while emphasizing the importance of research methodological and evaluation innovations in understanding complex social science issues. These findings are crucial for guiding the design and marketing strategies of future technology products, especially in the rapidly growing market of older adults.

Discussion on research hotspots and evolutionary trends (RQ4)

By analyzing core keywords, we can gain deep insights into the hot topics, evolutionary trends, and quality distribution of research in the field of older adults’ technology acceptance. The frequent occurrence of the keywords “TAM” and “UTAUT” indicates that the applicability and theoretical extension of existing technology acceptance models among older adults remain a focal point in academia. This phenomenon underscores the enduring influence of the studies by Davis ( 1989 ) and Venkatesh et al. ( 2003 ), whose models provide a robust theoretical framework for explaining and predicting older adults’ acceptance and usage of emerging technologies. With the widespread application of artificial intelligence (AI) and big data technologies, these theoretical models have incorporated new variables such as perceived risk, trust, and privacy issues (Amin et al. 2024 ; Chen et al. 2024 ; Jing et al. 2024b ; Seibert et al. 2021 ; Wang et al. 2024b ), advancing the theoretical depth and empirical research in this field.

Keyword co-occurrence cluster analysis has revealed multiple research hotspots in the field, including factors influencing technology adoption, interactive experiences between older adults and assistive technologies, the application of mobile health technology in health management, and technology-assisted home care. These studies primarily focus on enhancing the quality of life and health management of older adults through emerging technologies, particularly in the areas of ambient assisted living, smart health monitoring, and intelligent medical care. In these domains, the role of AI technology is increasingly significant (Qian et al. 2021 ; Ho 2020 ). With the evolution of next-generation information technologies, AI is increasingly integrated into elder care systems, offering intelligent, efficient, and personalized service solutions by analyzing the lifestyles and health conditions of older adults. This integration aims to enhance older adults’ quality of life in aspects such as health monitoring and alerts, rehabilitation assistance, daily health management, and emotional support (Lee et al. 2023 ). A survey indicates that 83% of older adults prefer AI-driven solutions when selecting smart products, demonstrating the increasing acceptance of AI in elder care (Zhao and Li 2024 ). Integrating AI into elder care presents both opportunities and challenges, particularly in terms of user acceptance, trust, and long-term usage effects, which warrant further exploration (Mhlanga 2023 ). These studies will help better understand the profound impact of AI technology on the lifestyles of older adults and provide critical references for optimizing AI-driven elder care services.

The Time-zone evolution mapping and burst keyword analysis further reveal the evolutionary trends of research hotspots. Early studies focused on basic technology acceptance models and user perceptions, later expanding to include quality of life and health management. In recent years, research has increasingly focused on cutting-edge technologies such as virtual reality, telehealth, and human-robot interaction, with a concurrent emphasis on the user experience of older adults. This evolutionary process demonstrates a deepening shift from theoretical models to practical applications, underscoring the significant role of technology in enhancing the quality of life for older adults. Furthermore, the strategic coordinate mapping analysis clearly demonstrates the development and mutual influence of different research themes. High centrality and density in the themes of Usage Experience and Assisted Living Technology indicate their mature research status and significant impact on other themes. The themes of Smart Devices, Theoretical Models, and Mobile Health Applications demonstrate self-contained research trends. The themes of Human-Robot Interaction, Characteristics of the Elderly, and Research Methods are not yet mature, but they hold potential for development. Themes of Digital Healthcare Technology, Psychological Factors, and Socio-Cultural Factors are closely related to other themes, displaying core immaturity but significant potential.

In summary, the research hotspots in the field of older adults’ technology acceptance are diverse and dynamic, demonstrating the academic community’s profound understanding of how older adults interact with technology across various life contexts and needs. Under the influence of AI and big data, research should continue to focus on the application of emerging technologies among older adults, exploring in depth how they adapt to and effectively use these technologies. This not only enhances the quality of life and healthcare experiences for older adults but also drives ongoing innovation and development in this field.

Research agenda

Based on the above research findings, to further understand and promote technology acceptance and usage among older adults, we recommend future studies focus on refining theoretical models, exploring long-term usage, and assessing user experience in the following detailed aspects:

Refinement and validation of specific technology acceptance models for older adults: Future research should focus on developing and validating technology acceptance models based on individual characteristics, particularly considering variations in technology acceptance among older adults across different educational levels and cultural backgrounds. This includes factors such as age, gender, educational background, and cultural differences. Additionally, research should examine how well specific technologies, such as wearable devices and mobile health applications, meet the needs of older adults. Building on existing theoretical models, this research should integrate insights from multiple disciplines such as psychology, sociology, design, and engineering through interdisciplinary collaboration to create more accurate and comprehensive models, which should then be validated in relevant contexts.

Deepening the exploration of the relationship between long-term technology use and quality of life among older adults: The acceptance and use of technology by users is a complex and dynamic process (Seuwou et al. 2016 ). Existing research predominantly focuses on older adults’ initial acceptance or short-term use of new technologies; however, the impact of long-term use on their quality of life and health is more significant. Future research should focus on the evolution of older adults’ experiences and needs during long-term technology usage, and the enduring effects of technology on their social interactions, mental health, and life satisfaction. Through longitudinal studies and qualitative analysis, this research reveals the specific needs and challenges of older adults in long-term technology use, providing a basis for developing technologies and strategies that better meet their requirements. This understanding aids in comprehensively assessing the impact of technology on older adults’ quality of life and guiding the optimization and improvement of technological products.

Evaluating the Importance of User Experience in Research on Older Adults’ Technology Acceptance: Understanding the mechanisms of information technology acceptance and use is central to human-computer interaction research. Although technology acceptance models and user experience models differ in objectives, they share many potential intersections. Technology acceptance research focuses on structured prediction and assessment, while user experience research concentrates on interpreting design impacts and new frameworks. Integrating user experience to assess older adults’ acceptance of technology products and systems is crucial (Codfrey et al. 2022 ; Wang et al. 2019 ), particularly for older users, where specific product designs should emphasize practicality and usability (Fisk et al. 2020 ). Researchers need to explore innovative age-appropriate design methods to enhance older adults’ usage experience. This includes studying older users’ actual usage preferences and behaviors, optimizing user interfaces, and interaction designs. Integrating feedback from older adults to tailor products to their needs can further promote their acceptance and continued use of technology products.

Conclusions

This study conducted a systematic review of the literature on older adults’ technology acceptance over the past decade through bibliometric analysis, focusing on the distribution power, research power, knowledge base and theme progress, research hotspots, evolutionary trends, and quality distribution. Using a combination of quantitative and qualitative methods, this study has reached the following conclusions:

Technology acceptance among older adults has become a hot topic in the international academic community, involving the integration of knowledge across multiple disciplines, including Medical Informatics, Health Care Sciences Services, and Ergonomics. In terms of journals, “PSYCHOLOGY, EDUCATION, HEALTH” represents a leading field, with key publications including Computers in Human Behavior , Journal of Medical Internet Research , and International Journal of Human-Computer Interaction . These journals possess significant academic authority and extensive influence in the field.

Research on technology acceptance among older adults is particularly active in developed countries, with China and USA publishing significantly more than other nations. The Netherlands leads in high average citation rates, indicating the depth and impact of its research. Meanwhile, the UK stands out in terms of international collaboration. At the institutional level, City University of Hong Kong and The University of Hong Kong in China are in leading positions. Tilburg University in the Netherlands demonstrates exceptional research quality through its high average citation count. At the author level, Chen from China has the highest number of publications, while Peek from the Netherlands has the highest average citation count.

Co-citation analysis of references indicates that the knowledge base in this field is divided into three main categories: theoretical model deepening, emerging technology applications, and research methods and evaluation. Seminal literature focuses on four areas: specific technology use by older adults, expansion of theoretical models of technology acceptance, information technology adoption behavior, and research perspectives. Research themes have evolved from initial theoretical deepening and analysis of influencing factors to empirical studies on individual factors and emerging technologies.

Keyword analysis indicates that TAM and UTAUT are the most frequently occurring terms, while “assistive technology” and “virtual reality” are focal points with high frequency and centrality. Keyword clustering analysis reveals that research hotspots are concentrated on the influencing factors of technology adoption, human-robot interaction experiences, mobile health management, and technology for aging in place. Time-zone evolution mapping and burst keyword analysis have revealed the research evolution from preliminary exploration of influencing factors, to enhancements in quality of life and health management, and onto advanced technology applications and deepening of theoretical models. Furthermore, analysis of research quality distribution indicates that Usage Experience and Assisted Living Technology have become core topics, while Smart Devices, Theoretical Models, and Mobile Health Applications point towards future research directions.

Through this study, we have systematically reviewed the dynamics, core issues, and evolutionary trends in the field of older adults’ technology acceptance, constructing a comprehensive Knowledge Mapping of the domain and presenting a clear framework of existing research. This not only lays the foundation for subsequent theoretical discussions and innovative applications in the field but also provides an important reference for relevant scholars.

Limitations

To our knowledge, this is the first bibliometric analysis concerning technology acceptance among older adults, and we adhered strictly to bibliometric standards throughout our research. However, this study relies on the Web of Science Core Collection, and while its authority and breadth are widely recognized, this choice may have missed relevant literature published in other significant databases such as PubMed, Scopus, and Google Scholar, potentially overlooking some critical academic contributions. Moreover, given that our analysis was confined to literature in English, it may not reflect studies published in other languages, somewhat limiting the global representativeness of our data sample.

It is noteworthy that with the rapid development of AI technology, its increasingly widespread application in elderly care services is significantly transforming traditional care models. AI is profoundly altering the lifestyles of the elderly, from health monitoring and smart diagnostics to intelligent home systems and personalized care, significantly enhancing their quality of life and health care standards. The potential for AI technology within the elderly population is immense, and research in this area is rapidly expanding. However, due to the restrictive nature of the search terms used in this study, it did not fully cover research in this critical area, particularly in addressing key issues such as trust, privacy, and ethics.

Consequently, future research should not only expand data sources, incorporating multilingual and multidatabase literature, but also particularly focus on exploring older adults’ acceptance of AI technology and its applications, in order to construct a more comprehensive academic landscape of older adults’ technology acceptance, thereby enriching and extending the knowledge system and academic trends in this field.

Data availability

The datasets analyzed during the current study are available in the Dataverse repository: https://doi.org/10.7910/DVN/6K0GJH .

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This research was supported by the Social Science Foundation of Shaanxi Province in China (Grant No. 2023J014).

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Shang, X., Liu, Z., Gong, C. et al. Knowledge mapping and evolution of research on older adults’ technology acceptance: a bibliometric study from 2013 to 2023. Humanit Soc Sci Commun 11 , 1115 (2024). https://doi.org/10.1057/s41599-024-03658-2

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Published on 30.8.2024 in Vol 11 (2024)

Evaluation of Digital Mental Health Technologies in the United States: Systematic Literature Review and Framework Synthesis

Authors of this article:

• Julianna Catania 1 , MPH   ; 
• Steph Beaver 1 , MChem   ; 
• Rakshitha S Kamath 1 , MS, MSL   ; 
• Emma Worthington 2 , MPH   ; 
• Minyi Lu 3 , PhD   ; 
• Hema Gandhi 3 , PhD   ; 
• Heidi C Waters 3 , PhD   ; 
• Daniel C Malone 4 , PhD  

1 Costello Medical, Boston, MA, United States

2 Costello Medical, Cambridge, United Kingdom

3 Otsuka Pharmaceutical Development & Commercialization Inc, Princeton, NJ, United States

4 Department of Pharmacotherapy, Skaggs College of Pharmacy, University of Utah, Salt Lake City, UT, United States

Corresponding Author:

Daniel C Malone, PhD

Department of Pharmacotherapy

Skaggs College of Pharmacy

University of Utah

30 S 2000 East

Salt Lake City, UT, 84112

United States

Phone: 1 801 581 6257

Email: [email protected]

Background: Digital mental health technologies (DMHTs) have the potential to enhance mental health care delivery. However, there is little information on how DMHTs are evaluated and what factors influence their use.

Objective: A systematic literature review was conducted to understand how DMHTs are valued in the United States from user, payer, and employer perspectives.

Methods: Articles published after 2017 were identified from MEDLINE, Embase, PsycINFO, Cochrane Library, the Health Technology Assessment Database, and digital and mental health congresses. Each article was evaluated by 2 independent reviewers to identify US studies reporting on factors considered in the evaluation of DMHTs targeting mental health, Alzheimer disease, epilepsy, autism spectrum disorder, or attention-deficit/hyperactivity disorder. Study quality was assessed using the Critical Appraisal Skills Program Qualitative and Cohort Studies Checklists. Studies were coded and indexed using the American Psychiatric Association’s Mental Health App Evaluation Framework to extract and synthesize relevant information, and novel themes were added iteratively as identified.

Results: Of the 4353 articles screened, data from 26 unique studies from patient, caregiver, and health care provider perspectives were included. Engagement style was the most reported theme (23/26, 88%), with users valuing DMHT usability, particularly alignment with therapeutic goals through features including anxiety management tools. Key barriers to DMHT use included limited internet access, poor technical literacy, and privacy concerns. Novel findings included the discreetness of DMHTs to avoid stigma.

Conclusions: Usability, cost, accessibility, technical considerations, and alignment with therapeutic goals are important to users, although DMHT valuation varies across individuals. DMHT apps should be developed and selected with specific user needs in mind.

Introduction

Digital health comprises a broad range of technologies, including mobile health, health information technology, wearable devices, and personalized medicine, which serve as tools to enhance health care delivery. Recently, several digital mental health (MH) therapeutics, a category of digital MH technologies (DMHTs), have received US Food and Drug Administration (FDA) approval to prevent, manage, or treat a medical disorder or disease based on evidence from superiority trials and compliance with technical guidelines [ 1 , 2 ]. However, most DMHTs, particularly apps, fall outside FDA jurisdiction because they are not intended to diagnose, treat, or prevent disease and because they are “low risk” in that they would not cause harm in the event of malfunction [ 3 ]. Due to this lack of regulatory framework, few DMHTs are supported by published efficacy studies. One study found that only 16% of MH apps recommended by college counseling centers were supported by efficacy studies published in peer-reviewed journals [ 4 ].

Nonetheless, many health care providers (HCPs) use MH apps in clinical practice. Up to 83% of behavioral health providers in a small study covering the Greater Boston area reported using apps as part of their clinical care, particularly mindfulness apps for patient anxiety management [ 5 ]. As many DMHTs are currently widely used in clinical practice without undergoing any formal assessment for quality or relevance, understanding how DMHTs should be assessed based on factors impacting their value from the perspective of key stakeholders, such as patients, caregivers, providers, payers, and employers, could improve the selection of DMHTs for use by patients, thereby increasing care quality and outcomes for those seeking MH support.

To address identified gaps, a systematic literature review (SLR) was conducted using a published framework to synthesize emerging themes from mixed methods evidence in order to understand how digital health solutions, encompassing both digital therapeutics and direct-to-consumer digital health technologies, are valued, with a focus on MH disorders, Alzheimer disease, epilepsy, autism spectrum disorder (ASD), and attention-deficit/hyperactivity disorder (ADHD) in the United States.

The SLR was performed in accordance with a prespecified protocol and reported in line with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines [ 6 , 7 ]. The protocol was not registered.

Search Strategy

Electronic databases, encompassing MEDLINE (including MEDLINE In-Process, MEDLINE Daily, and MEDLINE Epub Ahead of Print); Embase; the Cochrane Library (including Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials); PsycINFO; and the Health Technology Assessment Database, were selected in alignment with this SLR’s target indications and were searched on June 17, 2022. The search terms included combinations of free-text and Medical Subject Heading or Emtree terms related to indications of interest, DMHTs, and relevant outcomes or assessment types (eg, technology assessments and cost; Tables S1-S5 in Multimedia Appendix 1 ). Searches were limited to studies performed in the United States and to those published from 2017 onward.

Manual hand searches of gray literature, namely, the bibliographies of relevant SLRs identified from the electronic database searches and key conference proceedings (2019-2022), were performed to identify additional studies of relevance (Table S6 in Multimedia Appendix 1 ). The FDA website was also searched to identify factors involved in the FDA’s appraisal of relevant MH apps, which could supplement the factors identified in this SLR (Table S7 in Multimedia Appendix 1 ).

Study Selection

Studies were included in the SLR if they met prespecified criteria defined using the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, Research type) framework, which is appropriate for mixed methods research questions. Eligible studies were published in the English language, were set in the United States, and reported quantitative or qualitative outcomes relating to the factors considered in the evaluation of DMHTs. Only studies published in 2017 or later were included because of the rapidly evolving research area. Eligible studies reported on MH, Alzheimer disease, epilepsy, ASD, or ADHD from user, payer, or employer perspectives (Table S8 in Multimedia Appendix 1 ). While the primary focus of the SLR was MH, neurological conditions were also of interest because their pathologies, symptoms, and treatment strategies can overlap with those of mental illnesses. Alzheimer disease, epilepsy, ASD, and ADHD were selected because they are highly researched and represent diverse types of neurological conditions.

The titles and abstracts of records were assessed for inclusion against these eligibility criteria by 2 independent reviewers, and discrepancies were resolved by consensus, with arbitration by a third reviewer if necessary. Full texts of potentially relevant articles were acquired and screened using the same methodology.

Study Prioritization

Due to the large volume of the evidence identified, additional eligibility criteria were applied to prioritize primary research on theoretical DMHT valuation factors. In line with the thematic framework synthesis objective, theoretical valuation factors were defined as user or DMHT attributes that impact interaction with or perception of DMHTs; therefore, studies that reported only efficacy outcomes, such as mental illness symptom improvement, were deprioritized for full-text review. Secondary research was also deprioritized for full-text review. Studies that reviewed a select app against a framework and studies that reported only the outcomes specific to a select app were deprioritized for data extraction. For example, a study reporting the usability of a specific app’s features would have been deprioritized, while a study reporting what types of features increase MH app usability in general would not.

Data Extraction

All relevant data were extracted into a prespecified Microsoft Excel grid, and a quality assessment was performed for each study. Studies that reported only qualitative data were assessed with the Critical Appraisal Skills Program Qualitative Studies Checklist. Studies that reported only quantitative data were evaluated with the Critical Appraisal Skills Program Cohort Study Checklist, and studies reporting both qualitative and quantitative data were evaluated with both checklists [ 8 ]. Data extractions and quality assessments were performed by a single individual for each study, with the information verified by a second independent individual. Discrepancies were resolved by consensus, with arbitration by a third individual if necessary.

Framework Synthesis

A framework synthesis approach was undertaken to synthesize qualitative and quantitative data identified from the SLR. In line with the “best fit” framework synthesis approach, data were indexed deductively against an existing framework where possible, and novel themes were added inductively as needed [ 9 , 10 ]. The American Psychiatric Association (APA) Mental Health App Evaluation framework was considered the most appropriate framework to address the research objectives of this SLR because its key valuation themes were developed using psychiatrist and patient input, are broadly shared by other evaluation frameworks, are widely acknowledged in the literature, and have been described as durable and adaptable [ 11 - 13 ].

The APA model follows a hierarchical and chronological order whereby the evaluator moves through the framework using prompting questions (eg, “Does the app work offline?”). For this SLR, these questions were either thematically grouped into subthemes or left as prompting questions, as appropriate. The framework was therefore ultimately adapted into 3 levels: themes, subthemes, and more granular valuation criteria. It should be emphasized that this SLR did not aim to formally develop an updated framework to be used in practice by HCPs and their patients but rather was used to form a theoretical basis for understanding DMHT valuation factors, for which novel themes were expected to emerge.

A data-based convergent approach was used to synthesize quantitative and qualitative data [ 14 ]. Data were initially indexed deductively against the prespecified themes within the data collection instrument and then further synthesized within Docear [ 15 ], a mind-map software used to organize and connect data and concepts. Indexing was performed by 1 reviewer and checked by a second independent reviewer. New themes and subthemes that emerged from the literature through inductive coding were added post hoc to the thematic framework, with all extracted data then considered against both the prespecified and novel themes. The evidence identified for each theme was synthesized narratively, taking into consideration the context and design of each study.

Included Studies

A total of 4974 records were retrieved from the electronic databases. Of the 3374 (67.83%) unique records identified following deduplication across the databases, 2891 (85.68%) were excluded based on the eligibility criteria, and an additional 456 (13.52%) were deprioritized because they were not directly related to the topic of interest for this SLR. Excluded and deprioritized full texts are listed in Tables S9 and S10 in Multimedia Appendix 1 , respectively. Therefore, 27 (0.54%) articles were included from the electronic database searches. In addition, 1 article reporting on the same study as an already-included conference abstract was identified during supporting targeted searches and included as a supplementary record, resulting in a total of 28 articles reporting on 26 unique studies (Figure S1 in Multimedia Appendix 1 ). No relevant FDA appraisals were identified in the supplementary search.

Of the 26 included studies, 8 (31%) were quantitative, 12 (46%) were qualitative, and 6 (23%) used a mixed methods approach. While 5 (19%) studies assessed prospective cohorts, 22 (85%) used a cross-sectional approach, including 1 (4%) study that contained both a prospective cohort and a cross-sectional cohort ( Table 1 ). All studies (26/26, 100%) investigated a user perspective, with none specifically investigating payer or employer perspectives. Only 1 (4%) study, which examined ingestible sensor pills and smart pill dispensers to track adherence, investigated a DMHT that was not an app [ 16 ].

a Only information relevant to this systematic literature review is reported in this table.

b MDD: major depressive disorder.

c BD: bipolar disorder.

d OCD: obsessive-compulsive disorder.

e MH: mental health.

f General users are participants who were not necessarily diagnosed with indications of interest.

g ASD: autism spectrum disorder.

h HCP: Health care provider.

i mHealth: mobile health.

j PTSD: posttraumatic stress disorder.

k VA: Veterans Affairs.

l ADHD: attention-deficit/hyperactivity disorder.

m PHQ-9: Personal Health Questionnaire-9.

n GAD-7: Generalized Anxiety Disorder-7.

o DMHT: digital mental health technology.

Most frequently, studies focused on indications for mood, anxiety, or psychotic disorders (15/26, 58%), with other indications of focus including ADHD (2/26, 8%), ASD (1/26, 4%), and epilepsy (1/26, 4%). No relevant studies focused on Alzheimer disease were identified.

A total of 8 (31%) studies assessed the perspectives toward DMHTs of general population participants who were not necessarily diagnosed with relevant conditions [ 19 , 28 , 29 , 33 - 37 ]. Of these populations, several were identified as having an increased risk of MH conditions, such as patients with cancer [ 28 ], college students [ 29 , 34 ], deaf or hard-of-hearing individuals [ 19 ], and people who were unemployed or furloughed during the COVID-19 pandemic [ 33 ]. In addition, 1 (4%) study included a mix of patients who were above and below the referral criteria for psychotherapy for depression [ 37 ].

Thematic Analysis

Evidence was identified for all 5 themes included in the APA framework: engagement style (23/26, 88%), background and accessibility (16/26, 62%), privacy and security (13/26, 50%), therapeutic goal (12/26, 46%), and clinical foundation (8/26, 31%; Table 2 ). Five novel criteria were identified and added to the framework post hoc, 1 each under engagement style (forgetting or feeling unmotivated to use DMHTs) and privacy and security (personal image and stigma) and 3 under background and accessibility (willingness to pay, insurance restrictions, and cost savings compared with professional care).

a Novel findings that emerged from this systematic literature review.

b These subthemes and criteria were included in the American Psychiatric Association’s framework but were not reported on by studies included in this systematic literature review.

c HCP: health care provider.

Theme 1: Engagement Style

Engagement style was the most reported theme, with evidence identified from 23 (88%) of the 26 studies. Engagement style encompasses how and why users do or do not interact with DMHTs. The long-term usability subtheme was reported by 96% (22/23) of studies, short-term usability by 12 (52%) studies, and customizability by 7 (30%) studies. Findings from short- and long-term usability subthemes were highly interconnected.

A total of 4 studies reported that ease of use promoted short-term DMHT engagement. In the study by Schueller et al [ 35 ], 89.6% of a general population of smartphone users reported ease of use for MH apps as “important” or “very important,” and users qualitatively reported dislike of “overwhelming,” difficult-to-navigate apps. In addition, users valued apps that were “simplistic” [ 34 ], fit into their daily schedules, and were available when needed (eg, during acute symptom experiences) [ 5 , 25 ]. Select supporting qualitative data are presented in Table 3 .

a ASD: autism spectrum disorder.

b MH: mental health.

c ADHD: attention-deficit/hyperactivity disorder

d BD: bipolar disorder.

e Novel criteria identified by this systematic literature review.

f CHA: Cambridge Health Alliance.

g EMR: electronic medical record.

h HCP: health care provider.

Users valued DMHT features that aligned with their needs and priorities, as reflected by findings within the long-term usability subtheme. Across 9 studies, quantitative and qualitative findings demonstrated high interest in anxiety management features such as relaxation tools, breathing exercises, and mindfulness or meditation activities, and 10 studies identified interest in mood, symptom, or sleep tracking ( Tables 3 and 4 ). While most studies (24/26, 92%) focused on MH, patients with epilepsy also reported high interest in features to record seizure dates and types [ 17 ]. Importantly, users in 2 studies emphasized the need for developers to tailor DMHTs to the needs and priorities of the target population ( Table 3 ) [ 28 , 31 ]. Relatedly, mixed attitudes were reported toward positive affirmations and words of encouragement, with many users expressing interest but others emphasizing the value of a human component to DMHTs or cautioning against blanket encouragement and automated messages that could feel insincere [ 19 , 25 , 31 ].

a A 5-point Likert scale (0-4) was used.

b Not available.

c A 5-point Likert scale (1-5) was used.

d MH: mental health.

e DMHT: digital mental health technology.

f MDD: major depressive disorder.

g PTSD: posttraumatic stress disorder.

Both patients and caregivers expressed interest in psychoeducational content that aligned with their needs and priorities. When surveyed, >60% of veterans with anxiety or major depressive disorder (MDD), patients with epilepsy, young adults with psychosis, and essential and furloughed workers during the COVID-19 pandemic expressed interest in relevant psychoeducational content [ 17 , 22 , 32 , 33 ]. In contrast, only 4% of college students in another study reported using an MH app for information about MH, although an MH diagnosis was not required for study participation [ 29 ].

Caregivers of young adults with psychosis, caregivers of children with ADHD, and spouses and partners of people with bipolar disorder (BD) were all interested in information related to caring for the individual with the given disorder, such as information on psychological and pharmacological treatments, symptoms and symptom changes, and the MH system [ 21 , 24 , 26 ]. Comparatively smaller, but still notable, proportions of caregivers of patients with psychosis were interested in caregiver-focused information; for instance, 62% to 69% were interested in relaxation exercises, stress and mood management, and community events for caregivers, while 85% to 90% were interested in the aforementioned patient-focused information [ 21 ].

Information delivery–style preference was captured under the short-term usability subtheme. One study in young adults with psychosis and another study with their caregivers revealed that delivering information in a variety of formats was important; when presented with nonmutually exclusive options, >50% of both populations were interested in text content, video content, audio content, and discussion boards [ 21 , 22 ].

Social interaction promoted long-term engagement. Qualitatively, 3 studies found that users valued learning about similar experiences from others via social media–like features, which normalized their experiences and could provide new symptom management strategies ( Table 3 ) [ 28 , 31 , 36 ]. Similarly, 67% of both young adults with psychosis and deaf or hard-of-hearing survey participants (N=9) reported interest in peer support via chat features [ 19 , 22 ]. However, a comparatively smaller proportion of veterans with anxiety or MDD (48.3% of the full cohort and 51.3% of the smartphone user subgroup) were interested in peer support [ 32 ].

Overall, users endorsed social features to support their MH. In the study by Casarez et al [ 24 ], spouses and partners of people with BD likewise desired features to communicate with other caregivers and also emphasized that DMHTs could facilitate conversation and understanding with patients, a sentiment echoed by peer support specialists by Storm et al [ 38 ] ( Table 3 ). However, one oncology HCP cautioned that similar to support groups, “very strict guidelines of what is said” should be implemented to manage potential risks from shared social media–like content, although little additional context was provided [ 28 ].

Spouses and partners of people with BD also suggested both in-app information on accessing professional resources and direct counseling for the patient at times when other support might be inaccessible [ 24 ]. More than half of all workers, employed or unemployed during the COVID-19 pandemic, likewise endorsed links to resources, counseling, and crisis support as DMHT features, and 81.6% of young adults with psychosis endorsed a feature to communicate with professional experts [ 22 , 33 ]. Importantly, compared with patients attending public clinics, patients attending private psychiatric clinics expressed a higher comfort level for in-app communication with HCPs, suggesting demographic differences in the valuation of access to professional support through DMHTs [ 39 ].

A total of 9 studies reported an interest in DMHT reminders and notifications. Across 3 studies, >70% of patients or caregivers were interested in appointment reminders [ 17 , 21 , 22 ]. In addition, 73% and 68% of patients with epilepsy reported interest in reminders for medication refills and adherence, respectively [ 17 ]. Beyond apps, caregivers of patients with MDD, BD, and schizophrenia preferred an ingestible pill sensor that tracked medication adherence, physical activity, mood, and rest 9.79 (95% CI 4.81-19.9), 7.47 (95% CI 3.81-14.65), and 6.71 (95% CI 3.29-13.69) times more than a nondigital pill organizer, respectively [ 16 ]. Qualitatively, patients and caregivers also appreciated reminders, especially if reasonably timed or delivered via text messages [ 27 , 31 ].

Short-term DMHT engagement was also supported by games and graphics, which could communicate information in an accessible way [ 24 ], provide tools for stress management [ 17 , 33 ], and be used therapeutically with children [ 20 , 30 ]. However, some HCPs and caregivers expressed concerns that graphics and games may be distracting for certain children ( Table 3 ) [ 20 ].

In a novel finding, 3 studies reported forgetfulness or lack of motivation as an influence on DMHT engagement. In some cases, disuse was related to stress, other MH symptoms, or poor technical literacy ( Table 3 ) [ 5 , 25 , 31 ]. In contrast, “forgetting to use” DMHTs and “lack of motivation” were perceived as relatively small barriers to use in the study by Stiles-Shields et al [ 37 ].

The third subtheme under engagement style was customizability, which was generally valued by users; 70.9% of a general population of smartphone users noted customization was an important factor [ 35 ]. Similarly, 9.4% of all surveyed veterans and 10.9% of those with smartphones reported disliking a prior DMHT due to a lack of personalization [ 32 ]. Users specifically wanted to be able to opt out of irrelevant features, customize audiovisual and design elements, add personal notes to tracked mood data, and provide ongoing feedback to facilitate personalization [ 20 , 24 , 28 , 31 , 34 ].

Theme 2: Background and Accessibility

A total of 16 (62%) studies reported findings related to DMHT background and accessibility, which considers the developer of the DMHT, as well as functionality and accessibility. Of these, 12 (75%) studies reported on the technical considerations subtheme, 9 (56%) on costs, and 2 (13%) on stability.

Under technical considerations, 9 studies assessed diverse accessibility concerns. Broadly, Storm et al [ 38 ] emphasized that DMHTs should be developed in consideration of patients’ social, cognitive, and environmental needs to avoid overwhelming users. Specifically, 2 studies reported language as a barrier. Deaf or hard-of-hearing participants recommended visual content presentation, such as videos and icons, alongside text and American Sign Language translations where possible [ 19 ]. Similarly, when discussing English-only apps, 1 provider stated as follows: “language is a barrier for some [patients]” [ 5 ]. Mobility issues related to MH symptoms or other conditions and technical literacy, such as difficulties remembering passwords and navigating smartphones or apps, created accessibility barriers as well ( Table 3 ) [ 5 , 25 , 27 , 28 ]. Additional concerns included apps that restricted use based on geographic location [ 19 ], user difficulty in finding relevant, useful apps [ 32 ], and limited mobile device memory for downloading apps [ 5 , 19 ].

Offline functionality, reported by 6 studies, was also captured under the technical considerations subtheme. A majority (5/9, 56%) of participants included in the study by Borghouts et al [ 19 ] expressed concern about their mobile data plans when using their devices. Correspondingly, “availability of Wi-Fi” was noted as a top barrier to the use of apps for depression by Stiles-Shields et al [ 37 ], and several veterans in another study reported that home Wi-Fi connectivity facilitated app use by eliminating cellular data fees [ 25 , 37 ]. Quotes from patients and HCPs echoed the concern about apps without offline functionality ( Table 3 ) [ 23 , 30 ].

Data fees were also captured under the costs subtheme, with hidden or additional costs described as a barrier to app use by 2 studies [ 26 , 37 ]. Parents of children with ADHD reported that difficulty paying phone bills could result in their phones being shut off, limiting DMHT use; one MH clinic administrator stated as follows: “We often encounter parents’ phones being shut off because they haven’t paid their bill...If the app were free or low cost, I imagine it could be very helpful” [ 26 ]. In addition to hidden costs, this quote identifies up-front app costs as a barrier. Quantitatively, more than half of a general population of surveyed college students expressed that cost was a top concern for the use of MH apps [ 34 ]. Qualitative findings from 2 additional studies likewise identified cost as a barrier to DMHT use [ 25 , 27 ].

Three novel cost attributes were identified by this SLR: willingness to pay, insurance restrictions, and cost savings compared with professional care. Four studies, 3 of which focused on apps, explored willingness to pay for DMHTs from a user perspective. Willingness to pay varied based on user preference; some surveyed college students and smartphone users among general populations valued free apps due to financial restrictions or uncertainty around app effectiveness, although 1 student commented that the quality of free trials might be inferior [ 34 , 35 ]. Some smartphone users also voiced a limit on how much they would be willing to spend for an app subscription ( Table 3 ) [ 35 ]. Forma et al [ 16 ] found that caregivers were willing to pay US $255.04 (95% CI US $123.21-US $386.86) more per month for a pill with an ingestible sensor that tracked medication adherence, physical activity, and rest and could connect to an app that also collected self-reported mood data. Moreover, the caregivers were willing to pay US $124.50 (95% CI US $48.18-US $200.81) more per month for an app-connected pill organizer alone than for a nondigital pill organizer [ 16 ]. In contrast, some veterans expressed total disinterest in paid apps, with 1 user citing poor technical literacy (“don’t have the knowledge”) in addition to cost as affecting willingness to pay [ 25 ].

In another novel finding, a speech-language pathologist working with children with ASD preferred a single app including multiple features over separate apps for particular features due to insurance restrictions: “I agree that teaching Apps should be an in-App feature versus their own app because sometimes insurance doesn’t allow us to open the iPads purchased through insurance” [ 20 ]. Although no further detail was provided for this finding, it suggests that there may be restrictions on the use of other apps on devices purchased under insurance, which may have implications for DMHT use in formal care settings due to the lack of financial support.

In a third novel cost-related finding, a small number of participants from a general population of students (3.6%) in one study preferred using an MH app to seeing an MH professional due to cost savings [ 29 ].

A total of 13% (2/16) of studies reported on the subtheme of app stability and technical difficulties, with crashes and poor display quality decreasing DMHT value [ 35 , 37 ]. Participants in the study by Schueller et al [ 35 ] reported that technical difficulties were often an issue for apps developed by medical institutions, which might be effective and safe but less usable than apps from other developers.

Theme 3: Privacy and Security

A total of 13 (50%) out of 26 studies reported findings related to the privacy and security theme, which covered the use and protection of user data by DMHTs. Subthemes were reported relatively equally: data collection and storage (5/13, 38%), personal health information (PHI; 5/13, 38%), privacy policies (4/13, 31%), general privacy (3/13, 23%), and security measures (3/13, 23%).

Quantitative and qualitative findings on general privacy (ie, evidence not categorized under any specific subtheme), the data collection and storage subtheme, and the privacy policies subtheme revealed heterogeneous concerns ( Table 3 ). A total of 74% of a general population of college students reported privacy as a top concern for MH apps, although further details on the specific area of concern were unclear [ 34 ]. In the study by Stiles-Shields et al [ 37 ], participants were highly concerned with data access but less so with general privacy. Echoing the concerns about data collection and storage, 59.1% of veterans with anxiety or MDD in 1 study were concerned about in-app PHI protection [ 32 ]; however, a qualitative study in veterans with posttraumatic stress disorder, alcohol use disorder, or MDD reported that a relatively small number of participants expressed privacy concerns. In the latter study, reasons for the concerns included distrust in Veterans Affairs, belief that digital data are inherently not confidential, and fear of phone hacking [ 25 ]. From an HCP perspective, none of the surveyed behavioral health HCPs agreed with the statement “My patients are concerned about data security,” despite multiple patients within the same study reporting privacy concerns [ 5 ].

Still, privacy policies were important overall, with 70.5% of smartphone MH app users rating having a privacy policy as “very important” or “important” [ 35 ]. Melcher et al [ 34 ] found that although users valued data protection, some reported a lack of awareness about data privacy, and others were concerned about obscure privacy policies and PHI use. As noted in the data collection and storage subtheme, veteran concerns about government use of PHI were heterogeneous [ 25 ].

A novel valuation factor not included in the APA framework related to user concern with PHI privacy and security regarding MH diagnoses and MH app use is a desire to upkeep their personal image or avoid stigma ( Table 3 ) [ 5 , 25 , 29 , 40 ]. For instance, 21.1% of a general college student population preferred MH app use to seeing an MH professional due to anonymity or reduced stigma [ 29 ]. One participant in a study of Veterans Affairs health service users described access to professional care via MH apps as convenient because they could avoid disclosing their use of MH services to explain leaving work early for an appointment [ 25 ].

In line with the overarching concern about PHI privacy and security, users valued app security measures. Schueller et al [ 35 ] reported that 74.2% of users rated data encryption as “important” or “very important.” Users in another study perceived the level of privacy protection as the highest for apps using a combination of a generic app name (ie, not reflecting the indicated MH disorder); easily hidden modules; and secure, user-authenticated web portals for making module changes [ 40 ]. Behavioral health clinic staff echoed the importance of discreet MH app names ( Table 3 ) [ 30 ].

Theme 4: Therapeutic Goal

There were 12 (46%) studies that reported on the factors relating to the integration of DMHTs with users’ therapeutic goals. The clinical actionability and therapeutic alliance subthemes were reported by 83% (10/12) and 58% (7/12) of studies, respectively.

A total of 9 studies reported the value of clinically actionable insights from apps where the users could acquire and practice new skills to make positive changes in their lives ( Table 3 ). For instance, patient and caregiver app users reported interests in “daily tips,” “new ideas,” and “solutions or recommendations” for symptom management [ 26 , 27 , 36 ]. Furthermore, an app that could serve as a resource for multiple management strategies was preferable [ 26 , 28 , 31 ]. Quantitatively, 4% of patients receiving acute treatment in a partial hospitalization program for MH conditions, including mood and psychotic disorders, reported that the primary purpose of their DMHT use was therapy skills practice [ 18 ]. HCPs similarly appreciated that DMHTs could facilitate patients practicing skills outside of formal treatment sessions [ 5 ]. In particular, clinicians from a youth behavioral health clinic noted that DMHTs might be especially beneficial for young users because they could be conveniently and discreetly incorporated into their daily lives [ 30 ].

Users valued easy data sharing with clinicians, particularly for mood- or symptom-tracking features, which could improve communication and the accuracy of symptom reporting during clinical visits [ 5 , 25 - 27 , 34 , 36 ]. For instance, 53% of a general college student population believed that the potential to share information with their clinician was “one of the top benefits” of using DMHTs [ 34 ]. In addition, many HCPs reported active use or interest in the use of DMHTs in clinical practice to facilitate asynchronous communication and increase patient engagement with treatments outside of formal appointments; however, some preferred traditional care strategies for their personalization and flexibility ( Table 3 ) [ 5 , 26 , 30 ].

Theme 5: Clinical Foundation

A total of 8 (31%) studies reported findings related to the clinical foundation of DMHTs, that is, their utility and appropriateness for patients. Clinical validity was the most reported subtheme, with evidence identified from 6 (75%) studies; 2 (25%) studies reported on the user feedback subtheme and 2 (25%) on the impressions of use subtheme, which captured users’ perceptions of app content as accurate and relevant.

Across subthemes, users valued evidence of DMHT benefit or efficacy from various sources. A total of 71.8% of surveyed veterans said that they would use a DMHT if they “saw proof that it worked” for their MH conditions [ 32 ]. Similarly, among the 811 general population participants surveyed, 69.5% ranked direct research evidence as “important” or “very important” for DMHT, and 66.8% ranked indirect research evidence the same [ 35 ]. Qualitative data identified recommendations from HCPs or academic institutions, as well as evidence of DMHT benefit from publications or research studies, as specific sources for clinically valid evidence of benefits ( Table 3 ) [ 27 , 34 , 35 ].

In addition to academic and professional support, the user feedback subtheme captured user interest in whether DMHTs were beneficial for peers or recommended by other trusted individuals. Patients with depression reported that other users’ experiences influenced their app use, with one user wanting to know “...if other people had success using it” [ 27 ]. Quantitatively, user ratings and user reviews were ranked as “important” or “very important” factors in DMHT use by 59.4% and 58.7% of the general population participants, respectively [ 35 ].

Quality Assessment

The risk of bias was overall moderate. Of the 14 studies including quantitative components, only 1 (7%) used relevant validated outcome measurement instruments [ 33 ]; all others used custom questionnaires. Of the 18 studies with qualitative components, 4 (22%) were at risk of selection bias due to participants being exclusively recruited using web-based postings and research registries [ 33 - 35 , 37 ], and only 1 (6%) considered the relationship between researcher and participant when interpreting the results [ 36 ]. Full quality assessments for qualitative and quantitative study components can be found in Tables S11 and S12 in Multimedia Appendix 1 , respectively.

Principal Findings

This SLR aimed to identify and synthesize qualitative and quantitative evidence on how DMHTs are valued by users, payers, and employers in the United States. Evidence from users with or without diagnosed relevant disorders, caregivers, and HCPs was captured across a wide range of demographics. No study reported evaluating an app from a payer or employer perspective. Furthermore, all but one included study focused on mobile apps.

No relevant appraisals of DMHTs were identified from the FDA website searches; however, 8 relevant FDA approval labels or notifications for MH apps or guidance documents for industry and FDA staff were identified. The content of these materials overlapped with some valuation factors identified in this SLR, including evidence of clinical efficacy and safety, app maintenance, and privacy and security.

Engagement style, although not covered by the FDA materials, was the most reported theme by the studies included in this SLR and was found to overlap heavily with other themes. Engagement may be a key consideration for app developers, as app user retention can be low: 1 study showed that >90% of users had abandoned free MH apps within 30 days of installation [ 41 ]. Engagement is also a key clinical concern in terms of DMHT efficacy; one meta-analysis of 25 studies showed that increased use of DMHT modules was significantly associated with positive outcomes regardless of the target MH condition [ 42 ]. The findings of this SLR may therefore be informative to both DMHT designers and HCPs who integrate DMHTs into clinical care by providing insight on DMHT valuation and thus how use and benefit can be improved. For instance, users valued DMHTs that were easy to use and aligned with their needs and priorities, particularly through features that supported their therapeutic goals. In addition, content presented through multiple delivery modes, such as both text and visuals, promoted engagement as well as accessibility.

However, engagement and feature preference varied across populations. For instance, DMHT valuation was affected by technical literacy, which may relate to user demographics; in this SLR, veterans repeatedly emphasized technical literacy as a barrier to DMHT use [ 25 ]. Similarly, offline functionality may be more important for some users. Although 85% of the total United States population owns smartphones, only 59% of Medicare beneficiaries have access to a smartphone with a wireless plan. Moreover, beneficiaries who are older, less educated, disabled, or Black or Hispanic have even lower digital access [ 43 , 44 ]. These findings emphasize the importance of customizability and suggest that app development and selection in the clinical setting should consider the demographics of the target population, particularly in relation to ease of use and offline functionality.

Background and accessibility findings also identified up-front and hidden costs as barriers to DMHT use, with the willingness to pay varying among individuals. This has important implications for app development, considering that many MH apps currently on the market are direct-to-consumer sales and require out-of-pocket payment. App developers often take this approach as it does not require the accumulation of formal evidence of clinical benefit for FDA approval [ 45 ], but it may present a financial barrier to use for consumers.

Privacy and security, reported by 13 (50%) out of 26 studies, was a prevalent theme, with users primarily concerned with data and PHI security within apps. This finding reflects wider research; a 2019 review of 116 depression-related apps retrieved from iTunes and Google Play stores in 2017 found that only 4% of the identified apps had acceptable transparency in privacy and security, with many completely lacking a privacy policy [ 46 ]. Similarly, 39% of MH apps recommended by college counseling centers had no privacy policy, and of those with a policy, 88% collected user data, and 49% shared that data with third parties [ 4 ]. Most evidence identified in this SLR under this theme, as well as findings previously published in the wider literature, focuses on these remote privacy risks. However, local privacy concerns are also important to users. In particular, inconspicuous naming and the ability to hide sensitive modules within MH apps were rated as highly important by both patients and HCPs to maintain user privacy. Users emphasized a desire to avoid the stigma associated with mental illness, which was also reflected by the findings in the engagement style theme: more young adults with psychosis were more interested in in-app messaging with other patients in psychosis recovery (67.1%) than a provider and family member together (47.3%) or their personal support network (59.8%) [ 22 ]. Similarly, youths were interested in apps that could be used discreetly in school or other public settings to avoid potential MH stigma. This is a key, novel finding of this SLR, considering that many app or DMHT components on the market are named after their target disorder.

The use of DMHTs to achieve therapeutic goals was discussed from patient, caregiver, and HCP perspectives, all of which valued DMHTs that had evidence of efficacy, presented clinically actionable information, and facilitated patient-clinician relationships. Of the 5 studies that explored how HCPs value DMHTs in clinical practice, 2 (40%) were restricted to the oncology or ASD settings and were not readily generalizable to wider MH settings [ 20 , 28 ]. In other studies, providers reported interest in using DMHTs to facilitate asynchronous communication with patients and their caregivers, promote patient skill practice, and improve care for children through the use of games and visuals [ 26 , 30 ]. However, while HCPs overall believed that DMHTs improved care, some believed that their clinical training allowed for care personalization beyond what DMHTs could provide. Feature customizability and receipt of input from HCPs and users during app development and testing may be a way to mitigate these concerns, as well as concerns about safety and efficacy, as many available apps do not appropriately address user health concerns [ 47 ].

Findings additionally suggested that training and resources on DMHTs would be beneficial to ensure that HCPs were equipped to integrate DMHTs into their practices [ 5 ]. Collaboration between DMHT specialists and HCPs, along with a shift from randomized controlled trials to effectiveness-implementation hybrid trials, may be a way to streamline the integration of DMHTs into clinical care and provide more training and resources for HCPs [ 30 , 48 ].

This review followed a prespecified protocol and used systematic methods in line with the York Centre for Reviews and Dissemination guidelines [ 49 ] to conduct an exhaustive search of the literature, identifying evidence relevant to the review objectives from multiple databases and supplementary sources. The framework synthesis approach allowed for the inclusion and analysis of both qualitative and quantitative data, providing a detailed picture of not only what DMHT features users value but why they value them, especially in areas where valuation varies across patient demographics. In addition, the APA framework is a robust model created with patient and HCP input that incorporates key valuation themes broadly shared by other frameworks and widely acknowledged in the literature [ 11 - 13 ].

Limitations

Methodological limitations should be considered when interpreting the findings of this SLR. Only publications in English and in United States populations were included. As perceptions of value are influenced by factors including cultures, laws, and health care settings, the findings of this SLR should not be generalized to other countries. For instance, trust in HCPs and rates of longstanding relationships between patients and primary care providers are lower in the United States than in many European nations [ 50 , 51 ], which could impact the type of support users want from DMHTs (ie, engagement style) or interest in DMHT integration with therapeutic goals.

In addition to the prespecified eligibility criteria, deprioritization strategies were implemented due to the large volume of the identified evidence, and this may have resulted in missing relevant articles. In particular, the deprioritization of secondary research and opinion pieces likely led to the exclusion of relevant discussion around payer perspectives and reimbursement, for which no evidence was included in this SLR. Furthermore, although unlikely, there may have been reporting biases in the included studies due to missing results, which this SLR was not able to assess.

This SLR identified no evidence for 3 subthemes included in the APA framework: business model (background and accessibility), which covers DMHT funding sources and potential sources of conflict, medical claims (background and accessibility), which examines whether DMHTs claim to be medical and the trustworthiness of their creators, and data ownership, access, and export (therapeutic goal), which includes sharing data with eHealth records or wellness devices (eg, Apple HealthKit [Apple Inc], Fitbit [Google LLC]). The valuation of these subthemes should be evaluated in future research.

Conclusions

In summary, app usability, cost, accessibility and other technical considerations, and alignment with therapeutic goals were the most reported valuation factors identified by this SLR. Many studies also reported user preference for apps that incorporated privacy and security features that provided protection from stigma. However, individual DMHTs and their features are valued differently across individuals based on demographics and personal preferences. MH apps should be developed and selected with these specific user needs in mind. Feature customizability and input from users and HCPs during development may improve app usability and clinical benefit.

Acknowledgments

The authors thank Max Lee, Costello Medical, US, for medical writing and editorial assistance based on the authors’ input and direction.

Conflicts of Interest

DCM is a consultant for Otsuka Pharmaceutical Development & Commercialization (OPDC) Inc for this project and has received consulting funds from Pear Therapeutics, Sanofi, Avidity, Sarepta, Novartis, and BioMarin. ML, HG, and HCW are employees of OPDC. JC, SB, RSK, and EW are employees of Costello Medical. This research was funded by OPDC.

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Abbreviations

Edited by J Torous; submitted 15.02.24; peer-reviewed by A Mathieu-Fritz, K Stawarz; comments to author 05.05.24; revised version received 20.06.24; accepted 21.06.24; published 30.08.24.

©Julianna Catania, Steph Beaver, Rakshitha S Kamath, Emma Worthington, Minyi Lu, Hema Gandhi, Heidi C Waters, Daniel C Malone. Originally published in JMIR Mental Health (https://mental.jmir.org), 30.08.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Mental Health, is properly cited. The complete bibliographic information, a link to the original publication on https://mental.jmir.org/, as well as this copyright and license information must be included.

• UNC Libraries
• HSL Academic Process
• Searching PubMed
• Literature Reviews

Searching PubMed: Literature Reviews

Created by health science librarians.

• Basic Searches
• Filters and Narrowing Searches
• Find Full-Text Articles
• Save Search Results
• Saving Searches & Creating Alerts
• My NCBI Accounts

Section Objective

What is a literature review, clearly stated research question, search terms, searching worksheets, boolean and / or.

The content in the Literature Review section defines the literature review purpose and process, explains using the PICO format to ask a clear research question, and demonstrates how to evaluate and modify search results to improve the accuracy of the retrieval.

A literature review seeks to identify, analyze and summarize the published research literature about a specific topic.  Literature reviews are assigned as course projects; included as the introductory part of master's and PhD theses; and are conducted before undertaking any new scientific research project.

The purpose of a literature review is to establish what is currently known about a specific topic and to evaluate the strength of the evidence upon which that knowledge is based. A review of a clinical topic may identify implications for clinical practice. Literature reviews also identify areas of a topic that need further research.

A systematic review is a literature review that follows a rigorous process to find all of the research conducted on a topic and then critically appraises the research methods of the highest quality reports. These reviews track and report their search and appraisal methods in addition to providing a summary of the knowledge established by the appraised research.

The UNC Writing Center provides a nice summary of what to consider when writing a literature review for a class assignment. The online book, Doing a literature review in health and social care : a practical guide (2010), is a good resource for more information on this topic.

Obviously, the quality of the search process will determine the quality of all literature reviews. Anyone undertaking a literature review on a new topic would benefit from meeting with a librarian to discuss search strategies. A consultaiton with a librarian is strongly recommended for anyone undertaking a systematic review.

Use the email form on our Ask a Librarian page to arrange a meeting with a librarian.

The first step to a successful literature review search is to state your research question as clearly as possible.

It is important to:

• be as specific as possible
• include all aspects of your question

Clinical and social science questions often have these aspects (PICO):

• People/population/problem  (What are the characteristics of the population?  What is the condition or disease?)
• Intervention (What do you want to do with this patient?  i.e. treat, diagnose)
• Comparisons [not always included]  (What is the alternative to this intervention?  i.e. placebo, different drug, surgery)
• Outcomes  (What are the relevant outcomes?  i.e. morbidity, death, complications)

If the PICO model does not fit your question, try to use other ways to help be sure to articulate all parts of your question. Perhaps asking yourself Who, What, Why, How will help.  

Example Question:  Is acupuncture as effective of a therapy as triptans in the treament of adult migraine?

Note that this question fits the PICO model.

• Population: Adults with migraines
• Intervention: Acupuncture
• Comparison: Triptans/tryptamines
• Outcome: Fewer Headache days, Fewer migraines

A literature review search is an iterative process. Your goal is to find all of the articles that are pertinent to your subject. Successful searching requires you to think about the complexity of language. You need to match the words you use in your search to the words used by article authors and database indexers. A thorough PubMed search must identify the author words likely to be in the title and abstract or the indexer's selected MeSH (Medical Subject Heading) Terms.

Start by doing a preliminary search using the words from the key parts of your research question.

Step #1: Initial Search

Enter the key concepts from your research question combined with the Boolean operator AND. PubMed does automatically combine your terms with AND. However, it can be easier to modify your search if you start by including the Boolean operators.

migraine AND acupuncture AND tryptamines

The search retrieves a number of relevant article records, but probably not everything on the topic.

Step #2: Evaluate Results

Use the Display Settings drop down in the upper left hand corner of the results page to change to Abstract display.

Review the results and move articles that are directly related to your topic to the Clipboard .

Go to the Clipboard to examine the language in the articles that are directly related to your topic.

• look for words in the titles and abstracts of these pertinent articles that differ from the words you used
• look for relevant MeSH terms in the list linked at the bottom of each article

The following two articles were selected from the search results and placed on the Clipboard.

Here are word differences to consider:

• Initial search used acupuncture. MeSH Terms use Acupuncture therapy.
• Initial search used migraine.  Related word from MeSH Terms is Migraine without Aura and Migraine Disorders.
• Initial search used tryptamines. Article title uses sumatriptan. Related word from MeSH is Sumatriptan or Tryptamines.

With this knowledge you can reformulate your search to expand your retrieval, adding synonyms for all concepts except for manual and plaque.

#3 Revise Search

Use the Boolean OR operator to group synonyms together and use parentheses around the OR groups so they will be searched properly. See the image below to review the difference between Boolean OR / Boolean AND.

Here is what the new search looks like:

(migraine OR migraine disorders) AND (acupuncture OR acupuncture therapy) AND (tryptamines OR sumatriptan)

• Search Worksheet Example: Acupuncture vs. Triptans for Migraine
• Search Worksheet

Combining search words with the search.   << Previous: My NCBI Accounts Last Updated: Aug 13, 2024 11:48 AM URL: https://guides.lib.unc.edu/search-pubmed Log in using your username and password Search More Search for this keyword Advanced search Latest content Current issue Write for Us BMJ Journals You are here Volume 19, Issue 1 Reviewing the literature Article Text Article info Citation Tools Rapid Responses Article metrics Joanna Smith 1 , Helen Noble 2 1 School of Healthcare, University of Leeds , Leeds , UK 2 School of Nursing and Midwifery, Queens's University Belfast , Belfast , UK Correspondence to Dr Joanna Smith , School of Healthcare, University of Leeds, Leeds LS2 9JT, UK; j.e.smith1{at}leeds.ac.uk https://doi.org/10.1136/eb-2015-102252 Statistics from Altmetric.com Request permissions. If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways. Implementing evidence into practice requires nurses to identify, critically appraise and synthesise research. This may require a comprehensive literature review: this article aims to outline the approaches and stages required and provides a working example of a published review. Are there different approaches to undertaking a literature review? What stages are required to undertake a literature review. The rationale for the review should be established; consider why the review is important and relevant to patient care/safety or service delivery. For example, Noble et al 's 4 review sought to understand and make recommendations for practice and research in relation to dialysis refusal and withdrawal in patients with end-stage renal disease, an area of care previously poorly described. If appropriate, highlight relevant policies and theoretical perspectives that might guide the review. Once the key issues related to the topic, including the challenges encountered in clinical practice, have been identified formulate a clear question, and/or develop an aim and specific objectives. The type of review undertaken is influenced by the purpose of the review and resources available. However, the stages or methods used to undertake a review are similar across approaches and include: Formulating clear inclusion and exclusion criteria, for example, patient groups, ages, conditions/treatments, sources of evidence/research designs; Justifying data bases and years searched, and whether strategies including hand searching of journals, conference proceedings and research not indexed in data bases (grey literature) will be undertaken; Developing search terms, the PICU (P: patient, problem or population; I: intervention; C: comparison; O: outcome) framework is a useful guide when developing search terms; Developing search skills (eg, understanding Boolean Operators, in particular the use of AND/OR) and knowledge of how data bases index topics (eg, MeSH headings). Working with a librarian experienced in undertaking health searches is invaluable when developing a search. Once studies are selected, the quality of the research/evidence requires evaluation. Using a quality appraisal tool, such as the Critical Appraisal Skills Programme (CASP) tools, 5 results in a structured approach to assessing the rigour of studies being reviewed. 3 Approaches to data synthesis for quantitative studies may include a meta-analysis (statistical analysis of data from multiple studies of similar designs that have addressed the same question), or findings can be reported descriptively. 6 Methods applicable for synthesising qualitative studies include meta-ethnography (themes and concepts from different studies are explored and brought together using approaches similar to qualitative data analysis methods), narrative summary, thematic analysis and content analysis. 7 Table 1 outlines the stages undertaken for a published review that summarised research about parents’ experiences of living with a child with a long-term condition. 8 View inline An example of rapid evidence assessment review In summary, the type of literature review depends on the review purpose. For the novice reviewer undertaking a review can be a daunting and complex process; by following the stages outlined and being systematic a robust review is achievable. The importance of literature reviews should not be underestimated—they help summarise and make sense of an increasingly vast body of research promoting best evidence-based practice. ↵ Centre for Reviews and Dissemination . Guidance for undertaking reviews in health care . 3rd edn . York : CRD, York University , 2009 . ↵ Canadian Best Practices Portal. http://cbpp-pcpe.phac-aspc.gc.ca/interventions/selected-systematic-review-sites / ( accessed 7.8.2015 ). Bridges J , et al ↵ Critical Appraisal Skills Programme (CASP). http://www.casp-uk.net / ( accessed 7.8.2015 ). Dixon-Woods M , Shaw R , et al Agarwal S , Jones D , et al Cheater F , Twitter Follow Joanna Smith at @josmith175 Competing interests None declared. Read the full text or download the PDF: An official website of the United States government The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site. The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely. Publications Account settings My Bibliography Collections Citation manager Save citation to file Email citation, add to collections. Create a new collection Add to an existing collection Add to My Bibliography Your saved search, create a file for external citation management software, your rss feed. Search in PubMed Search in NLM Catalog Add to Search The literature review: an integral part of the research process PMID: 10238670 DOI: 10.1177/000841747804500303 The importance of the review of literature, a component of any research study, has been relatively downgraded by occupational therapists because it is time-consuming. In order to encourage novice researchers and illustrate the importance of a comprehensive review of related literature, a review was carried out in the area of auditory feedback and the teaching of the use of myo-electrically controlled prostheses. This illustration of method in research includes initial ideas, assumptions and facts, the researchable question, the literature review and the conclusions drawn from the review which help guide the researcher in his potential study. PubMed Disclaimer Similar articles Clinical reasoning process underlying choice of teaching strategies: a framework to improve occupational therapists' transfer skill interventions. Carrier A, Levasseur M, Bédard D, Desrosiers J. Carrier A, et al. Aust Occup Ther J. 2012 Oct;59(5):355-66. doi: 10.1111/j.1440-1630.2012.01017.x. Epub 2012 Jun 27. Aust Occup Ther J. 2012. PMID: 22998513 Learning patterns of young children with above-elbow prostheses. Shaperman J. Shaperman J. Am J Occup Ther. 1979 May;33(5):299-305. Am J Occup Ther. 1979. PMID: 474338 [The path to customized prosthesis: role of the occupational therapist in the recovery of autonomy]. Fogliaresi S, Mulè C, Borboni A, Taveggia G. Fogliaresi S, et al. G Ital Med Lav Ergon. 2015 Jul-Sep;37 Suppl(3):34-8. G Ital Med Lav Ergon. 2015. PMID: 26731955 Italian. The use of coaching in occupational therapy: an integrative review. Kessler D, Graham F. Kessler D, et al. Aust Occup Ther J. 2015 Jun;62(3):160-76. doi: 10.1111/1440-1630.12175. Epub 2015 Jan 30. Aust Occup Ther J. 2015. PMID: 25641669 Review. Sport prostheses and prosthetic adaptations for the upper and lower limb amputees: an overview of peer reviewed literature. Bragaru M, Dekker R, Geertzen JH. Bragaru M, et al. Prosthet Orthot Int. 2012 Sep;36(3):290-6. doi: 10.1177/0309364612447093. Prosthet Orthot Int. 2012. PMID: 22918905 Review. Search in MeSH LinkOut - more resources Full text sources. Citation Manager NCBI Literature Resources MeSH PMC Bookshelf Disclaimer The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited. An official website of the United States government The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site. The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely. Publications Account settings Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now . Advanced Search Journal List J Med Libr Assoc v.107(1); 2019 Jan Exploring PubMed as a reliable resource for scholarly communications services Associated data. PubMed’s provision of MEDLINE and other National Library of Medicine (NLM) resources has made it one of the most widely accessible biomedical resources globally. The growth of PubMed Central (PMC) and public access mandates have affected PubMed’s composition. The authors tested recent claims that content in PMC is of low quality and affects PubMed’s reliability, while exploring PubMed’s role in the current scholarly communications landscape. The percentage of MEDLINE-indexed records was assessed in PubMed and various subsets of records from PMC. Data were retrieved via the National Center for Biotechnology Information (NCBI) interface, and follow-up interviews with a PMC external reviewer and staff at NLM were conducted. Almost all PubMed content (91%) is indexed in MEDLINE; however, since the launch of PMC, the percentage of PubMed records indexed in MEDLINE has slowly decreased. This trend is the result of an increase in PMC content from journals that are not indexed in MEDLINE and not a result of author manuscripts submitted to PMC in compliance with public access policies. Author manuscripts in PMC continue to be published in MEDLINE-indexed journals at a high rate (85%). The interviewees clarified the difference between the sources, with MEDLINE serving as a highly selective index of journals in biomedical literature and PMC serving as an open archive of quality biomedical and life sciences literature and a repository of funded research. The differing scopes of PMC and MEDLINE will likely continue to affect their overlap; however, quality control exists in the maintenance and facilitation of both resources, and funding from major grantors is a major component of quality assurance in PMC. INTRODUCTION The National Library of Medicine (NLM) creates and maintains resources that are at the heart of library services relating to health information. NLM’s mission has always included a focus on supporting health care research and practice and providing access to trustworthy and timely health information [ 1 ]. When NLM expanded its reach through online services, its feature product, MEDLINE, continued in that tradition. PubMed delivers a publicly available search interface for MEDLINE as well as other NLM resources, making it the premier source for biomedical literature and one of the most widely accessible resources in the world. Health sciences practitioners, researchers, faculty, and students have repeatedly reported PubMed and MEDLINE as one of the few sources they use to search literature [ 2 – 5 ]. As research, publishing, and access to scholarly resources have evolved over recent years, it is important to determine the role that PubMed and other NLM resources play in the dissemination of research and other scholarly output. Librarians are increasingly expected to assist with research and publishing issues, including ensuring funding compliance, conducting literature reviews, navigating open access, understanding copyright, measuring impact, working with data, and disseminating research [ 6 , 7 ]. As a result, medical librarians and researchers depend on NLM resources as trustworthy sources of quality literature. About PubMed, MEDLINE, and PubMed Central For many users, PubMed is synonymous with the MEDLINE database. In 1971, NLM created MEDLINE to serve as the online version of the Medical Literature Analysis and Retrieval System (MEDLARS). MEDLINE (or MEDLARS online) consists of life sciences and biomedical journal citations that are indexed with NLM Medical Subject Headings (MeSH) [ 8 ]. Originally, the MEDLINE service could only support up to twenty-five users simultaneously, and access was available primarily in medical libraries [ 9 ]. To improve the availability of MEDLINE, NLM released the PubMed search engine as part of the Entrez retrieval system, beginning as an experimental database in 1996 [ 10 ]. As of June 1997, PubMed provides free and unlimited access for all users through the Internet [ 11 ]. Over time, PubMed became more than a public interface for MEDLINE citations and publisher links to full-text: it has undergone numerous transformations to improve usability and functionality through several redesigns, and introduced features including LinkOut and Single Citation Matcher [ 12 ]. PubMed has also provided a pathway toward increased accessibility to research by expanding to include access to PubMed Central and the National Center for Biotechnology Information (NCBI) Bookshelf [ 13 – 15 ]. As of October 2017, PubMed contained 27.5 million records, representing approximately 7,000 journals [ 16 ]. Together, records from PubMed Central (PMC) and records included in or marked for inclusion in MEDLINE make up almost 95% of PubMed ( Figure 1 ). Bookshelf is approximately 1% of PubMed, and the remaining 4% consists of several types of records, including out-of-scope citations from MEDLINE journals, citations that precede the date that a journal is selected for MEDLINE, and new records submitted by publishers that have not yet been reviewed by NLM staff. Composition of PubMed in 2017 The largest percentage of records in PubMed comes from MEDLINE, and the Literature Selection Technical Review Committee (LSTRC) is responsible for reviewing and recommending journal titles to include in MEDLINE. LSTRC assesses the scope, quality of content, accessibility of foreign-language articles, technical quality, and publishing practices. Also, “journals must be able to submit XML tagged data, and electronic-only journals must provide robust current access to all of its content and have an acceptable arrangement for permanent preservation of, and access to, the content” [ 17 ]. Subject expertise and relevance are additional criteria. At least 20% of content must relate to biomedicine and health, and journals that are accepted are oriented toward original research and provide the highest expertise in the field. Rejected journals can reapply after 2 years. If rejected after a second submission, journals can then reapply every 3 years [ 16 – 18 ]. As of October 2017, MEDLINE contained 25 million records from over 5,600 journals [ 16 ]. The second largest component of PubMed is PMC. Launched in 2000, PMC serves as a permanent digital archive of full-text life sciences and biomedical journal articles. PMC also includes articles deposited by journal publishers and “author manuscripts,” in other words, published articles that are submitted in compliance with the public access policies of the National Institutes of Health (NIH) and other research funding agencies [ 15 , 19 – 21 ]. NLM provides public access to the contents of PMC and manages a collaborative called PMC International to store copies of its contents in local deposits at centers in multiple global locations [ 15 , 22 ]. Publishers supply 88% of the content in PMC through active provision of current or historical content or through selective deposits, and the remaining 12% of PMC comes from author manuscripts. As of October 2017, PMC contained 4.5 million articles. Publishers submit an application and sign an agreement to participate in PMC, and there are different options for contributing content ( Figure 2 ). Journals that agree to full participation deposit their entire issues in the archive on an ongoing basis and account for more than half of PMC. Scanned historical content represents 28% of the content and includes back issues of biomedical journals that NLM has identified as having historical significance. Selective deposits account for 5% of the content and include open access articles from hybrid publishers and articles deposited to support specific funding agency policies. As of May 2018, selective deposit is limited to journals indexed in MEDLINE [ 16 , 17 , 23 ]. Composition of PubMed Central in 2017 NLM staff review journals prior to including them to determine if they meet the criteria of the Collection Development Manual, which specifies the aim to acquire primarily scholarly literature “pertaining to health care, to the practice of the science and art of medicine broadly conceived, and to those branches of the life sciences which are fundamental to that science and art” [ 15 , 24 ]. An external panel of independent experts assesses the journal’s scientific, editorial, and technical quality, and the NLM Library Operations Division makes the final decision. This process was implemented in 2014 following the approval of the PMC National Advisory Committee because of a significant increase in journals applying to participate. Rejected journals can reapply after two years [ 16 , 25 , 26 ]. PMC is also the designated repository for twelve US agencies and organizations and twenty-seven European funders [ 16 , 21 ]. Author manuscripts are deposited in compliance with these and other funders’ public access policies. The policies require that literature resulting from specified funded research must be made available in PMC within six to twelve months of publication, depending on the funder policy [ 19 , 20 ]. The manuscripts are distinguishable from other content by the author manuscript banner and runner down the left side of the page. Other NLM resources that may be associated with PubMed are the NLM Catalog, PubMed Health, and MedlinePlus. The NLM Catalog contains bibliographic records for over 1.4 million journals, books, audiovisuals, electronic resources, and other materials. It also includes detailed indexing information for journals in PubMed and other NCBI databases, but not all materials in the NLM Catalog are part of NLM’s collection [ 16 ]. While PubMed Health and MedlinePlus have similar names to the aforementioned resources, these resources are built for different uses: PubMed Health provides reviews of clinical effectiveness research for health care providers and patients and will be retired in 2018, and MedlinePlus is a consumer health website providing information on various health topics, drugs, dietary supplements, and health tools [ 27 , 28 ]. Scholarly communication uses of PubMed, MEDLINE, and PubMed Central As librarians respond to the growing demand for knowledge and expertise about publishing, author rights, and access, PubMed has served as a resource for supporting these services. Authors are looking at options for open and public access to their research, and a 2013 memorandum from the US Office of Science and Technology Policy (OSTP) provided greater motivation for increasing research availability. The OSTP memorandum instructed federal agencies with more than $100 million in annual research expenditures to consult with stakeholders and implement a plan for public access within 6 months [ 29 ]. Thus, many authors must now comply with open and public access mandates from publishers and funders, many of which resulted from the 2013 OSTP memorandum. Navigating the publishing process through the proliferation of predatory publishers adds another challenge for authors [ 30 ]. Authors are increasingly turning to libraries for information that will guide them through the research and publishing process. Advisory organizations are also recommending the library as a resource. For example, the Federal Trade Commission (FTC) recommends checking with a librarian before submitting an article to a journal to avoid predatory publishers [ 31 ]. NIH supported the FTC’s recommendations in a November 2017 notice that provided advice for authors who are publishing the results of NIH-funded research. This statement provides recommendations for identifying credible journals and implores its stakeholders (including librarians) to help authors engage in effective scholarly communication practices. NIH also recognizes the role of NLM in maintaining PubMed and PMC and encouraging publishers to follow established industry best practices [ 32 ]. Publishers, librarians, and authors rely on PubMed/MEDLINE, among other resources, as a vetting tool. For publishers, having a journal indexed in MEDLINE means that it has met stringent criteria for quality—which attracts potential authors, subscribers, and readers—and journals receive more submissions after their acceptance into MEDLINE. Publishers also value the MeSH metadata and the increased discoverability through PubMed or private vendors that provide access [ 21 ]. MEDLINE is an important tool for librarians to help users find trustworthy journals in which to publish. In addition, authors who publish in MEDLINE-indexed journals can often reach a larger audience due to health professionals’ and medical librarians’ preference for PubMed and MEDLINE to search for literature. PMC also contributes to scholarly communication efforts because it provides public access to research. Funders support this archive because research resulting from public funding should be available to the public [ 29 , 33 ]. Providing easier access also helps to translate research into practice. Evidence-based practice can be inhibited when practitioners are unable to access research behind paywalls. Public and open access can also improve the likelihood of an author’s work being cited and can benefit the teaching, collaboration, and implementation of research [ 29 , 34 – 36 ]. Materials do not have to be open access to be included in PMC, and most materials that are currently available are under copyright. Librarians and researchers using materials found in the archive must still comply with the articles’ copyright and license terms. There has been some concern about the quality of PubMed content from sources other than MEDLINE. Some of this concern comes from a misunderstanding of the different components of PubMed. That is, although comparisons are often made between PubMed and MEDLINE as if they are two different databases, MEDLINE is in fact a subset of PubMed. There has also been misrepresentation that PubMed is an index itself [ 37 , 38 ]. The main focus of this concern centers on the inclusion of journals in PubMed that were identified by Jeffrey Beall on his list of “potentially predatory publishers,” which is no longer updated and is archived at beallslist.weebly.com . Other concern centers on PMC as affecting PubMed’s quality, particularly author manuscripts that are deposited into PMC and automatically included in PubMed without any review process. There are also criticisms that the PMC inclusion criteria for participating journals are less stringent than MEDLINE inclusion criteria [ 39 , 40 ], although author manuscripts are peer-reviewed manuscripts that have been accepted for publication and deposited in compliance with a funder’s policy; some refer to this as the “PMC backdoor.” One author states, “PubMed’s brand has long been muddled in ways that pass lower-quality works through the system under cover of prestige. This has real consequences” [ 39 ]. This argument exists largely on the assumption that lower-quality publications—as opposed to journals reviewed and included in MEDLINE—are increasingly found in PubMed due to NIH-funded research published in journals managed by predatory publishers. The authors did not investigate the first concern regarding the percentage of “predatory publishers” in PubMed because it centers on a list that is highly disputed as reputable [ 41 ]. Furthermore, publishing in a potentially predatory publication does not automatically equate to poor scientific methods in an article, and when articles from publications in Beall’s List were assessed recently, PMC and PubMed were found to have lower numbers of these articles than resources like Scopus and Google Scholar [ 42 ]. Our aim was to examine whether there has been a change in the proportion of PubMed content indexed in MEDLINE, and if so, whether PMC is contributing to this shift. We also examined whether the deposit of author manuscripts provides a “PMC backdoor” for low-quality research. In addition, we interviewed representatives speaking on behalf of NLM and an expert consultant for the PMC journal review process to provide context regarding the history, purpose, and quality control of these resources. We collected data in November 2017 through searches via the PubMed interface along with calculations in Excel. Data were obtained and organized according to the year that records were created in PubMed to show the trend in items added to PubMed each year. Data were not organized by publication year because records are not always added to PubMed in the same year that they are published. PMC records were also retrieved by searching PubMed using the subset pubmed pmc[sb] , which retrieves live or available journal article records in PMC (i.e., excluding articles currently under embargo). Because PubMed provides a public access interface for MEDLINE, we investigated current practices relating to the addition of records in PubMed to examine whether MEDLINE-indexed articles continue to represent the majority of PubMed records. To do this, we obtained the number of new records added to PubMed in 1990 and to both PubMed and PMC for the years 2000 to 2017. We also obtained the number of new records that were indexed in MEDLINE and still in-process to be indexed in MEDLINE during the same time span in order to determine the ongoing percentage of records in each resource that is or will be indexed in MEDLINE. For the purpose of our analysis, MEDLINE records included the records in PubMed marked as either medline or inprocess in the subset field. The subset field retrieves records by citation status, subject, or journal category, with the search tag [SB] [ 43 ]. The records marked as medline have been indexed with MeSH and, if relevant, may be linked to the NCBI Gene database or included in Supplementary Concept Records for substances that are not in MeSH [ 44 , 45 ]. The in-process records have been identified for inclusion in MEDLINE, but the indexing process is not completed yet; therefore, any records with the inprocess subset would be missed if a user searches PubMed using only MeSH (or any MEDLINE-only interface). Data were collected on the number of author manuscript records in PMC from 2005 to 2017 along with the number of these records that were also indexed in MEDLINE to determine the percentage of PMC content that was author manuscripts and the percentage of author manuscripts that was indexed in MEDLINE in recent years. All trends were compared prior to and following the NIH public access mandate to determine whether the mandate served as a motivation for authors to deposit their articles and for journals to participate in PMC to attract potential authors’ submissions. Using an adaptation of the Comparing Means and Proportions spreadsheet created by Princeton Data and Statistical Services, we performed descriptive analysis of trends via z -test across years, with a significance threshold of a =0.001. Supplementary calculations were made in Tableau Desktop 10.1.1 to create figures. Supplemental Appendix A provides the formulas we used to perform the statistical analyses. We also interviewed Joyce E. B. Backus, NLM associate director for library operations; Kathryn Funk, NLM program manager for PMC; and Laurey Steinke, an expert consultant for the PMC journal review process and assistant professor at the University of Nebraska Medical Center Department of Biochemistry and Molecular Biology, for additional qualitative details regarding PubMed, MEDLINE, and PMC. Deborah Ozga, NLM head of the Index Section, and Rebecca Stanger, NLM journal publisher liaison, provided additional information via email. PubMed remains primarily composed of MEDLINE records, but this composition has changed slowly over time. We can see this in the past decade: 96% of PubMed consisted of MEDLINE records in 2008, whereas 91% of PubMed consisted of MEDLINE records (including in-process records) in 2017. The cause of the overall composition shift was evident when we investigated the records that were added each year to determine the percentage that were indexed in MEDLINE, in process to be indexed in MEDLINE, and not indexed in MEDLINE. In both PubMed and PMC, records outside of MEDLINE composed a larger percentage of new records each year ( Figure 3 ). MEDLINE-indexing of new records in PubMed and PMC by year PubMed’s growth and backlog The number of records added to PubMed and PMC increased between 2000 and 2017 ( Figure 4 ). Not surprisingly, there was a jump in new PMC records following the 2008 NIH public access mandate. New PubMed and PMC records added by year (by 10,000s) In November 2017, over 800,000 new PubMed records that had been created between 2011 to 2017 were still in-process and not yet indexed in MEDLINE. More than 265,000 and 506,000 of these new records were created in 2016 and 2017, respectively. In her email correspondence, Ozga acknowledged a backlog and mentioned that NLM is working toward developing variations of the Medical Text Indexer (MTI) algorithm, such as the MTI First Line Indexing, for semi-automated or fully automated indexing to reduce the backlog of in-process records [ 13 , 34 ]. MEDLINE representation in PubMed We obtained the number of new records added to PubMed in 1990 and to both PubMed and PMC for the years 2000 to 2017. Although the proportion of new PubMed and PMC records that were indexed in MEDLINE varied across years, a pronounced change in the proportion of MEDLINE-indexed PMC records was observed after the NIH public access mandate went into effect in 2008, whereas the trend in PubMed records was similar but less extreme ( Figure 5 ). It is important to note that PMC records are a subset of PubMed records. Percentage of new PubMed and PMC records indexed in MEDLINE Bonferroni-adjusted p -values showed that the proportion of MEDLINE-indexed records differed significantly between PubMed and PMC ( p <0.001). We also tested the proportion of new PubMed and PMC records across years to identify trends in their MEDLINE indexing. New PubMed records were compared between 1990 (10 years before PMC), 2000 (at PMC’s start), and 2008–2017 (in the past decade). New PMC records were compared between 2000 and 2008–2017. The proportion of new MEDLINE-indexed PubMed records (out of total records) differed significantly across all year comparisons ( p< 0.001), except for between 2010 and 2014 ( p >0.001). The proportion of new MEDLINE-indexed PMC records also differed significantly across years ( p< 0.001), except for between 2009 and 2014 ( p> 0.001) and between 2012 and 2013 ( p> 0.001). We next examined the number of new records for author manuscripts in PMC from 2005 to 2017 to look at trends of publication in MEDLINE journals. Before the NIH public access mandate in 2008, almost all author manuscripts in PMC were published in MEDLINE-indexed journals. From 2005 to 2011, author manuscripts were submitted at an increasing rate, and, as of 2017, more than two-thirds of these records were still published in MEDLINE-indexed journals ( Figure 6 ). Although they are called “author manuscripts,” Funk stated that over 70% of the manuscript submitted to the NIH Manuscript Submission System (NIHMS) were publisher-initiated to help authors comply with the NIH public access policy [ 25 ]. Even though more manuscripts were being deposited to comply with public access policies, these submissions were still only 12% of PMC and were an even smaller component of PubMed (<2%). New author manuscript records added to PubMed While funding mandates dictate deposit and PMC author manuscripts are automatically included in PubMed, NLM staff added by email that “NIH and other funders do not dictate the journals in which their funded authors may publish. Consequently, author manuscripts in PMC may be from journals that have not yet undergone scientific review by NLM, are traditionally out of scope for the NLM collection, or have not met NLM’s standards for PMC” [ 17 ]. We also examined the number of PMC records from publishers that deposited either entire issues through full participation or selective deposit of materials that are not related to compliance with public access policies. This represents approximately 83% of PMC and has undergone the largest change in MEDLINE indexing over time. We excluded author manuscript records from this search. After the NIH public access mandate took effect in 2008, the number of new publisher-submitted records added to PMC doubled, and the number of new publisher-submitted, MEDLINE-indexed records dropped by half ( Figure 7 ). PubMed records added from PMC publisher submissions Note: This chart displays records from participating journals’ contents and from scanned historical materials. It does not include records from author manuscripts that were submitted by the publisher. When asked about the changing percentage of new records indexed in MEDLINE, Backus stated that although NLM’s aim is not to maintain a certain proportion of MEDLINE records in PubMed or PMC, there is hope that more MEDLINE-indexed journals will be deposited in PMC for long-term preservation and broader access [ 18 ]. Backus also noted that it is important to understand the different aims of MEDLINE and PMC, as established by NLM. The aim of MEDLINE is to provide a highly selective index of journals in biomedical literature. Conversely, PMC’s aim is to provide a permanent archive for good-quality research, so any journal that meets NLM’s standards for scientific and editorial quality will be accepted [ 8 , 26 ]. Publishing industry best practices are considered for both MEDLINE and PMC [ 24 ]. In response to criticisms of the increase in non-biomedical content deposited in PMC, both Funk and Backus emphasized that PMC provides a vehicle for research efficiency and broader content, while supporting public contributions to scientific research. Numerous funders list PMC as their mandated archive, including the Bill and Melinda Gates Foundation and all Department of Health and Human Services operating divisions (e.g., Centers for Disease Control and Prevention, Food and Drug Administration, and Centers for Medicare and Medicaid Services) [ 33 ]. The Department of Homeland Security began using PMC as an archive in 2018 [ 25 ]. Funk stated that including this non-biomedical content has value: some people might not easily find the literature if it is not included in the archive, and it is helpful for science to be less siloed, as there is some overlap between research domains [ 25 ]. For example, research occurring on the space station is beneficial to the biomedical community’s understanding of different aspects of human health [ 25 ]. Ongoing quality control In the interviews, Steinke, Backus, and Funk mentioned the reevaluation processes that occur for MEDLINE and PMC. Sometimes poor-quality journals exist in both resources because no process is perfect. Also, the quality of journals can change over time, reflecting changes in editorial leadership or publishers. Reviews have occurred for MEDLINE since LSTRC was formed in 1988, but these reviews typically centered on a specific topic. For example, the American Hospital Association and American Dental Association recommended journals in specific areas. This topic-centered approach had not occurred in recent years, but a publication that has been included in MEDLINE can be reviewed if issues are noted with publication quality, production problems, or nonconformance with industry best practices [ 25 , 26 ]. PMC has had an informal reevaluation process for years, but a more formal process was implemented in 2017 [ 25 ]. PMC journal managers perform ongoing quality assessment of features like the volume of content produced by journals and changes in journal practices. PMC staff also keep up with user reports of systemic problems and comments that are made about a resource through online conversations [ 25 ]. If there are verifiable concerns about the scientific or editorial quality of the content in a PMC journal or significant changes in its ownership, policies, or practices, a journal may undergo another review. Before a reevaluation begins, NLM staff will notify the journal of the concerns and place a hold on processing new content during the review. The reevaluation process is similar to the review process for new journal applications, including evaluation by external consultants, and the decision to continue or discontinue archiving journal content in PMC is final [ 17 ]. The diminishing percentage of MEDLINE-indexed records in PubMed is likely due to PMC as a growing component of PubMed. There are criticisms of PMC’s inclusion in PubMed, referring to it as a backdoor option for literature that is not indexed in MEDLINE. This “PMC backdoor” is blamed for reducing the quality of PubMed. In a blog post, Michelle Kraft, AHIP, former president of the Medical Library Association, compared PMC manuscripts appearing in PubMed to medical advice from Gwyneth Paltrow’s Goop site being published on WebMD [ 40 ]. However, author manuscripts are currently the smallest percentage of PMC content (12%) and an even smaller component of PubMed (<2%). In addition, most manuscripts deposited by authors in PMC are published in MEDLINE-indexed journals, and this rate has remained high over time. Because the majority of manuscripts deposited by authors in PMC come from MEDLINE-indexed journals, it could be argued that the funding agencies’ grant review process provides some quality control for author manuscripts in PMC. Funk also stated a similar claim in the interview [ 25 ]. However, we reiterate that inclusion in MEDLINE does not guarantee good scientific methods to users searching for research. Likewise, authors should still critically assess publication venues and make good choices in determining where to publish, especially when they submit articles from funded research, because predatory publishers can make readers question research results. In regard to journal submissions, the rate of additions coming from publishers is increasing, likely due to an interest in participating in the movement toward more open research that is reflected by authors’ publishing habits and public access mandates. However, any journal that is not indexed in MEDLINE with a formal agreement to deposit in PMC must go through a review process first. This review process has become more stringent in recent years. There is also a formal reevaluation process to address problem journals that have already been accepted. As the scholarly environment continues to change and research is available through interfaces that interact with thousands of journals, it is important to evaluate an article on its own merit in addition to evaluating the publication as a whole. This issue is not unique to PubMed, with researchers having previously found some potentially predatory journal titles in other databases, including the Directory of Open Access Journals and Academic Search Complete [ 46 – 48 ]. Librarians advise users on distinguishing quality research through critical appraisal and assist authors in searching for and choosing reputable publishers. Most use a number of tools in this process. NLM encourages users to visit the NLM Catalog for additional information about journals in PubMed, including their indexing status (MEDLINE or non-MEDLINE), their selection for the NLM collection, and their participation in PMC [ 16 , 49 ]. In addition, NIH offers recommendations for resources to evaluate journals, such as using Think Check Submit and becoming familiar with publishing best practices [ 32 ]. Multiple publications also explain how to critically read and evaluate the quality of scientific research at the article level [ 50 – 52 ]. Distinguishing resources in PubMed In regard to PubMed and the various resources it encompasses, it would be beneficial for users if NLM provided a clearer indication from which particular resources a record stems. It can be confusing to navigate the different types of content in PubMed, especially because there is so much overlap. Many people view a journal’s inclusion in MEDLINE as a credential that weighs in a journal’s favor because of the LSTRC review methods, even though PMC journals are also evaluated for scientific quality. Users still want the ability to filter results based on whether records are indexed in MEDLINE. Currently, the status of the different record types in PubMed is somewhat buried in the search results. There are no visible tags for other statuses (e.g., in process or publisher-supplied) available on the search results page, and the status tag [Indexed for MEDLINE] is only visible in the abstract view. Previously, this status was available in the summary view. There are multiple ways to search PubMed for MEDLINE-only citations, including by using solely MeSH terms in a search strategy, using the MEDLINE filter on the search results page, adding the medline[sb] tag to a search strategy, or searching MEDLINE through a licensed vendor interface. However, limiting a search to only MEDLINE records often excludes the most current research, as many articles are still in-process due to the indexing backlog. As NLM develops a solution for the backlog, it may become easier to search MEDLINE, but it is crucial for users to note that PMC also includes quality research and is providing increasing public access to literature that might otherwise be behind paywalls. Limitations Our findings are only as accurate as the retrieval of results using the NCBI PubMed interface, and the numbers reflect what was displayed in the results of search strategies that we developed and that NLM did not validate. There was also a discrepancy between totals when searching all[sb] in PMC and pubmed pmc[sb] or pubmed pmc all[sb] in PubMed, likely due to a small collection of PMC records that were not included in PubMed. It is also possible that some records were added to PubMed through MEDLINE before the full text was deposited in PMC in a different year. In addition, some PubMed records are still in the “publisher supplied” status, which means that they were recently added by the publisher, but NLM staff have not yet distinguished whether they will eventually be indexed in MEDLINE. The percentage of MEDLINE records in PubMed has been slowly decreasing; however, whether that trend will continue and the meaning and effect of this shift is not clear. Further research is necessary to investigate the impact of the increase in PMC content, especially the impact of the new review policies and the contributions of journals that fully participate, on the role of PubMed for users who are searching for literature and for authors who are attempting to seek validation for publications in which to publish. In addition, there is a lack of studies investigating the research quality of literature retrieved through PubMed as well as other resources, using proven critical appraisal methods rather than comparisons with lists of journals and publishers, like those created by Beall. Research of this caliber will support librarians’ efforts to encourage users to engage in the same types of evaluations when searching for literature and choosing where to submit research articles. SUPPLEMENTAL FILE Acknowledgments. The authors thank Dr. Angela Liegey-Dougall for her assistance with our statistical analysis methods. We also thank NLM staff and Dr. Laurey Steinke for providing information for our investigation. DATA AVAILABILITY STATEMENT Data associated with this article are available in the Texas Data Repository Dataverse <DOI: http://dx.doi.org/10.18738/T8/XTYSHI >. 321 IMAGES The Importance of Literature Review in Scientific Research Writing Why Is Literature Review Important? (3 Benefits Explained) | Flowchart representing the process of literature review from the The Importance of Literature Review in Scientific Research Writing (PDF) Literature review importance Flowchart of the PubMed literature review. VIDEO PubMed Search Tutorial PubMed Reminer PubMed and Embase Literature Review 1.0 Demonstration of PubMed Health Services Research Queries How PubMed Works: Selection. March 9, 2023 Advanced Literature Review Management from PubMed COMMENTS Advances in the Diagnosis and Management of Cardiac ... We evaluated the latest literature from major medical databases such as PubMed and Scopus, focusing on research from 2020 to 2024, to gather comprehensive insights into the current landscape of this condition. Insights from our review highlight the complex pathophysiology of cardiac amyloidosis and the diagnostic challenges it presents. Defining mental health literacy: a systematic literature review and Purpose This paper aims to explore how the term "mental health literacy" (MHL) is defined and understand the implications for public mental health and educational interventions. Design/methodology/approach An extensive search was conducted by searching PubMed, ERIC, PsycINFO, Scopus and Web of Science. Keywords such as "mental health literacy" and "definition" were used. The ... Something old, new, and borrowed . Rise of the systematic reviews Systematic reviews and other types of literature reviews are more prevalent in clinical medicine than in other fields. The recurring need for improvement and updates in these disciplines has led to the Living Systematic Review (LSR) concept to enhance the effectiveness of scientific synthesis efforts. While LSR was introduced in 2014, its adoption outside clinical medicine has been limited ... Assessing the Certainty of the Evidence in Systematic Reviews Serious concerns regarding limitations in the study design, inconsistency, imprecision, indirectness, and publication bias can decrease the certainty of the evidence. Using an example, this article describes and illustrates the importance and the steps for assessing the certainty of evidence and drawing accurate conclusions in a systematic review. Experiences of quality of life and access to health services among rare Due to the exploratory nature of our research questions, we used a scoping review method for this study. As described by Arksey and O'Malley [], scoping reviews serve to identify and map the available evidence on a particular topic in order to obtain a comprehensive overview of the literature.Our aim is to explore the relationship between quality of life and access to healthcare for ... Ecological care in nursing practice: a Walker and Avant concept Literature search. A systematic literature review was conducted using multiple health databases, including PubMed, Scopus, PsycINFO, CINAHL, ERIC, SID, and IranDoc. The concepts "ecological," "nurse" and "nursing" were searched using Boolean operators "AND" and "OR" in the title and abstract fields of each database. Cyclodextrin Complexes for the Treatment of Chagas Disease: A ... Cyclodextrins are ring-shaped sugars used as additives in medications to improve solubility, stability, and sensory characteristics. Despite being widespread, Chagas disease is neglected because of the limitations of available medications. This study aims to review the compounds used in the formation of inclusion complexes for the treatment of Chagas disease, analyzing the incorporated ... Incidence of post-extubation dysphagia among critical care patients Background Post-extubation dysphagia (PED) emerges as a frequent complication following endotracheal intubation within the intensive care unit (ICU). PED has been strongly linked to adverse outcomes, including aspiration, pneumonia, malnutrition, heightened mortality rates, and prolonged hospitalization, resulting in escalated healthcare expenditures. Nevertheless, the reported incidence of ... Knowledge mapping and evolution of research on older adults ... This study conducted a systematic review of the literature on older adults' technology acceptance over the past decade through bibliometric analysis, focusing on the distribution power, research ... JMIR Mental Health Background: Digital mental health technologies (DMHTs) have the potential to enhance mental health care delivery. However, there is little information on how DMHTs are evaluated and what factors influence their use. Objective: A systematic literature review was conducted to understand how DMHTs are valued in the United States from user, payer, and employer perspectives. Reviewing literature for research: Doing it the right way Selecting the right quality of literature is the key to successful research literature review. The quality can be estimated by what is known as "The Evidence Pyramid.". The level of evidence of references obtained from the aforementioned search tools are depicted in Figure 9. Systematic reviews obtained from Cochrane library constitute ... The Literature Review: A Foundation for High-Quality Medical Education Purpose and Importance of the Literature Review. An understanding of the current literature is critical for all phases of a research study. Lingard 9 recently invoked the "journal-as-conversation" metaphor as a way of understanding how one's research fits into the larger medical education conversation. As she described it: "Imagine yourself joining a conversation at a social event. Approaching literature review for academic purposes: The Literature INTRODUCTION. Writing the literature review (LR) is often viewed as a difficult task that can be a point of writer's block and procrastination in postgraduate life.Disagreements on the definitions or classifications of LRs may confuse students about their purpose and scope, as well as how to perform an LR.Interestingly, at many universities, the LR is still an important element in any ... How to Do a Systematic Review: A Best Practice Guide for ... The best reviews synthesize studies to draw broad theoretical conclusions about what a literature means, linking theory to evidence and evidence to theory. This guide describes how to plan, conduct, organize, and present a systematic review of quantitative (meta-analysis) or qualitative (narrative review, meta-synthesis) information. Writing an effective literature review Mapping the gap. The purpose of the literature review section of a manuscript is not to report what is known about your topic. The purpose is to identify what remains unknown—what academic writing scholar Janet Giltrow has called the 'knowledge deficit'—thus establishing the need for your research study [].In an earlier Writer's Craft instalment, the Problem-Gap-Hook heuristic was ... Writing a literature review Writing a literature review requires a range of skills to gather, sort, evaluate and summarise peer-reviewed published data into a relevant and informative unbiased narrative. Digital access to research papers, academic texts, review articles, reference databases and public data sets are all sources of information that are available to enrich ... The advantage of literature reviews for evidence-based practice The advantage of literature reviews for evidence-based practice. J Sch Nurs. 2015 Feb;31 (1):5. doi: 10.1177/1059840514564387. Integrity of Databases for Literature Searches in Nursing An effective literature review requires searching various reliable and credible databases such as MEDLINE (through PubMed or Ovid) and the Cumulative Index to Nursing and Allied Health Literature (CINAHL), among others that are relevant to the topic. ... The quality of content that is retrieved when using PubMed as a search engine is important ... Writing a literature review When writing a literature review it is important to start with a brief introduction, followed by the text broken up into subsections and conclude with a summary to bring everything together. A summary table including title, author, publication date and key findings is a useful feature to present in your review (see Table 1 for an example). How to Write a Systematic Review of the Literature This article provides a step-by-step approach to conducting and reporting systematic literature reviews (SLRs) in the domain of healthcare design and discusses some of the key quality issues associated with SLRs. SLR, as the name implies, is a systematic way of collecting, critically evaluating, integrating, and presenting findings from across ... Literature Reviews A literature review search is an iterative process. Your goal is to find all of the articles that are pertinent to your subject. Successful searching requires you to think about the complexity of language. You need to match the words you use in your search to the words used by article authors and database indexers. How to Undertake an Impactful Literature Review: Understanding Review The systematic literature review (SLR) is one of the important review methodologies which is increasingly becoming popular to synthesize literature in any discipline in general and management in particular. In this article, we explain the SLR methodology and provide guidelines for performing and documenting these studies. The Literature Review: A Foundation for High-Quality Medical Education Despite a surge in published scholarship in medical education 1 and rapid growth in journals that publish educational research, manuscript acceptance rates continue to fall. 2 Failure to conduct a thorough, accurate, and up-to-date literature review identifying an important problem and placing the study in context is consistently identified as one of the top reasons for rejection. 3,4 The ... Literature searching methods or guidance and their application to Defining the process to literature searching in systematic reviews: A literature review of guidance and supporting studies. BMC Medical Research Methodology , 18 ( 1 ), 85. 10.1186/s12874-018-0545-3 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ] Communication in healthcare: a narrative review of the literature and Design: Narrative literature review. Methods: A search was carried out on the databases PubMed, Web of Science and The Cochrane Library by means of the (MeSH)terms 'communication', 'primary health care', 'correspondence', 'patient safety', 'patient handoff' and 'continuity of patient care'. Reviewers screened 4609 records and 462 full texts ... Why the literature review is important Why the literature review is important. Why the literature review is important. Why the literature review is important J Prosthodont. 2010 Dec;19(8):656. doi: 10.1111/j.1532-849X.2010.00664.x. Author Nellie Kremenak. PMID: ... Review Literature as Topic* Reviewing the literature Implementing evidence into practice requires nurses to identify, critically appraise and synthesise research. This may require a comprehensive literature review: this article aims to outline the approaches and stages required and provides a working example of a published review. Literature reviews aim to answer focused questions to: inform professionals and patients of the best available ... The literature review: an integral part of the research process The importance of the review of literature, a component of any research study, has been relatively downgraded by occupational therapists because it is time-consuming. In order to encourage novice researchers and illustrate the importance of a comprehensive review of related literature, a review was carried out in the area of auditory feedback ... Literature review as a research methodology: An ... As mentioned previously, there are a number of existing guidelines for literature reviews. Depending on the methodology needed to achieve the purpose of the review, all types can be helpful and appropriate to reach a specific goal (for examples, please see Table 1).These approaches can be qualitative, quantitative, or have a mixed design depending on the phase of the review. Exploring PubMed as a reliable resource for scholarly communications The largest percentage of records in PubMed comes from MEDLINE, and the Literature Selection Technical Review Committee (LSTRC) is responsible for reviewing and recommending journal titles to include in MEDLINE. LSTRC assesses the scope, quality of content, accessibility of foreign-language articles, technical quality, and publishing practices. assignment business plan case study course work essay report research paper speech term paper thesis