systematic literature review aged care

• Open access
• Published: 16 August 2022

The concept of vulnerability in aged care: a systematic review of argument-based ethics literature

• Virginia Sanchini 1 , 3 ,
• Roberta Sala 2 &
• Chris Gastmans 3  

BMC Medical Ethics volume  23 , Article number:  84 ( 2022 ) Cite this article

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Vulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.

Using PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.

Thirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.

Conclusions

The way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human.

Peer Review reports

The word ‘vulnerability’ derives from the Latin verb vulnerare (i.e., wounding) and from the Latin noun vulnus (i.e., wound). Therefore, etymologically, vulnerability mostly refers to the susceptibility of being physically or emotionally wounded [ 1 , 2 ]. Yet, besides this prima facie characterisation, the notion of vulnerability has eschewed a univocal definition, both within and across distinct threads of the literature [ 1 , 3 , 4 , 5 ].

In philosophical literature, vulnerability is mostly considered to be a defining ontological feature of human beings, who are exposed to finitude and subject to the consequences of human embodiment, including the mutual interdependence and/or sociality that inherently structure human life [ 6 , 7 , 8 , 9 ]. Complementary— or, in some cases, alternative—philosophical approaches have interpreted vulnerability as the consequence of contingent factors, which expose some beings more than others to the aforementioned ‘wounds’, rather than interpreting it as a universal trait of our humanity [ 10 , 11 ].

In debates within mainstream bioethics, vulnerability is mostly addressed in terms of vulnerable populations, thus shifting the focus from theoretical concepts to groups of individuals. However, defining vulnerable populations or groups has also proved difficult [ 3 ], while the concept of vulnerability itself remains ill-defined in such literature. In broad terms, the label ‘vulnerable’ has been attributed to populations characterised by compromised capacity for consent (e.g., patients with serious cognitive impairments); by being at a higher risk of incurring in harm and/or wrongs (e.g., pregnant woman); or by both (e.g., children belonging to certain ethnic groups). Moreover, within research ethics policy and guidelines, vulnerable populations have been defined in relation to ‘reasons for vulnerability’ [ 12 ], which can be divided into two broad groups—‘respect for persons-based accounts’ and ‘justice-based accounts’ [ 12 p. 2]. According to ‘respect for persons-based accounts’, ‘persons who cannot provide informed and voluntary consent are susceptible to harm (i.e., vulnerable), because they are not able to protect their interests’ [ 12 p. 2]. According to ‘justice-based accounts’, vulnerable populations are those that are potentially more exposed to unfairness during recruitment and distribution of research benefits and risks, as well to exploitation, broadly understood. In addition, overlap between reasons for vulnerability, and hence of categories of vulnerable individuals, may occur. According to these interpretations, vulnerability has a negative connotation, and thus requires some form of intervention, among which ‘extra justification for including vulnerable populations in research’ [ 13 , 14 ], ‘considered’/‘special’ protection [ 15 , 16 ], and research and healthcare tailored on vulnerable populations’ needs [ 15 , 16 , 17 ] are paramount.

Historically, among the categories of vulnerable people, older persons are predominant. Older adults represent a vulnerable population in public health ethics [ 18 , 19 , 20 , 21 ], research ethics [ 16 , 17 ], and clinical ethics domains [ 22 , 23 , 24 ]. From a pathophysiological perspective in clinical ethics, an older adult is someone who is in a state of constant cognitive and physical decline [ 25 ]. Moreover, this condition leads to progressive depletion of functional reserve mechanisms, reduced homeostatic capabilities, and is frequently accompanied by complex comorbidities, which are often further complicated by geriatric syndromes and frailty [ 25 ]. From a psychosocial standpoint, ageing represents a life state characterised by contrasting requests (e.g., protection vis-a-vis autonomy recognition). Moreover, conditions such as income insecurity, lack of access to quality healthcare, unfriendly environments, and psychodynamic factors (e.g., uncertain future and fear of death) may further worsen older adults’ stability and increase their vulnerability. Finally, loneliness, and, in some circumstances, even isolation, may also characterise old age: Many elderly persons live alone, may be widowers, who often live in nursing homes. At the same time, some of their peers remain in their own homes, accompanied by caregivers who become their sole companions [ 26 , 27 , 28 , 29 ].

Although all these conditions may be thought of as being equivalent to older adults’ vulnerability, no comprehensive or systematic research on vulnerability in older adults has appeared in the literature. As a group, older adults are mostly assumed a priori to be or referred to as being vulnerable in bioethics and research ethics. In some but still limited cases, scholars have proposed different (even incompatible) conceptualisations of vulnerability in the wider bioethics literature that potentially seem to hold relevance for geriatric care. This systematic review provides an overview of these different conceptualisations of vulnerability and discusses their moral relevance, value, and the way that acknowledgments of vulnerability are thought to create obligations of care in the context of geriatric care. The findings of the review will facilitate further philosophical and bioethical research on arriving at a more context-specific and robust conceptualisation of vulnerability in the domain of geriatric care.

Methodology

To gain a comprehensive overview of the definitions, meanings, and the way that authors use the concept of vulnerability in aged care, we conducted a systematic review of argument-based literature [ 30 , 31 ]. Argument-based reviews are important for acquiring evidence for better decision-making in the delivery of healthcare, policy development, and conducting medical research [ 30 , 32 ]. They consist of a curation and evaluation of normative bioethics literature aimed at answering an ethical question.

Research questions

We formulated the following interrelated groups of research questions:

What is the meaning of vulnerability in the ethics literature on aged care?

In this context, does vulnerability differ from other similar concepts, such as fragility, frailty, and frailness?

What are the ethical arguments and approaches used for discussing vulnerability in aged care ethics?

What are the obligations, if any, that follow from the acknowledgment of older adults' vulnerability as reported in the aged care literature?

Literature search

The four research questions were formulated according to three groups of concepts we devised to organise our literature search (Table 1 ).

These ‘structures’ progressively culled publications to those that allowed us to answer our research question. The purpose of Group 1 concepts was to identify publications that focused on the concept of vulnerability and/or akin concepts, e.g., fragility. The purpose of Group 2 was to help narrow down papers that dealt with the specific population under investigation, i.e., older adults. The purpose of Group 3 was to restrict the search to research domains that likely contained papers using conceptualisations of vulnerability and/or akin concepts. Each group concept was expressed in specific database search terms in a suitable format for the different database queries (Table 2 ). Research strings were developed by the first author (VS) in consultation with the last author (CG).

Four major databases were queried: Pubmed®, Embase®, Web of Science™, and Philosopher’s Index. These databases, as a group, cover the literature in biomedicine, bioethics, philosophy, and (medical) anthropology.

Database queries were conducted between the 19th and the 23rd of December 2019, using language filters to identify only articles published in English (Table 3 ). Table 3 presents the number of results returned using the search terms, as well as the specific days on which the searches were performed.

We used EndNote™ (version X9, Clarivate Analytics, Philadelphia, PA, USA) reference library software to conduct and organise citations of the identified papers; duplicates were manually deleted.

The first author (VS) screened the titles, abstracts, and full texts of identified papers, according to a predefined set of inclusion and exclusion criteria (below) [ 33 ]. Abstract screening was performed independently by the first (VS) and last (CG) authors to assess the consistency of applying our selection criteria. For 91.94% of the abstracts (559 of 608), we agreed on the items to be included or excluded. For the questionable abstracts (8.06%, corresponding to 49 papers), the first (VS) and last (CG) authors discussed the candidate abstract until agreement was reached. If the full text of an article was not available, we emailed the first or corresponding author of that article to request a PDF copy. We also used the snowball technique and citation tracking to identify additional potentially relevant publications. Our search process was performed according to the statement and flowchart of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) [ 33 ] (Fig.  1 ).

Flow chart showing electronic database search, publication identification, and selection process for the included articles

Prisma scheme

The final list of included publications is reported in Table 4 . The description of characteristics of included publications is reported in Table 5 .

Inclusion and exclusion criteria

To be included in our systematic review and appraisal, candidate publications had to meet all inclusion criteria and had to have no exclusionary ones (Table 6 ). Screening of the publications was not limited by publication date.

As there is no standard for quality appraisal of papers in the argument-based literature, we referred to the ‘appraisal using procedural quality assurance criteria’s strategy’ of Mertz [ 31 ]. Quality appraisal was not used as a tool for inclusion/exclusion. Since the articles were published in peer-reviewed journals, we relied on the standards of the peer review process and on the academic reputation of the journals to bolster our assumptions that the quality of selected publications was sufficiently good.

Data extraction and synthesis

Data analysis and synthesis adhered to the five preparatory steps of the coding process detailed in the Qualitative Analysis Guide of Leuven (QUAGOL) [ 34 , 35 ]. QUAGOL has been used in other argument-based reviews [ 32 , 36 , 37 ].

For data extraction, the first author (VS) first read and reread several times all the included publications, highlighting the relevant parts and the main arguments described. The same author then developed a narrative summary of these highlighted parts. Third, for each publication, a conceptual scheme was created. The conceptual scheme is a synthetic framework in which different concepts deemed relevant to answer the research questions are presented [ 34 , 35 ]. An example of a conceptual scheme is presented in Additional file 1 : “Example of conceptual scheme”. Each conceptual scheme was analysed separately by the first (VS) and last (CG) authors to verify that it accurately characterised each included publication. Both researchers discussed conceptual schemes until they agreed on their adequate content. Fourth, these individual conceptual schemes were compared, with the aim of uncovering relationships that would produce an overall answer to our research questions. This resulted in a comprehensive scheme that integrated the most relevant meanings and dimensions of vulnerability and related concepts in aged care ethics (Tables 7 and 8 ). This scheme was iteratively evaluated and checked against previous QUAGOL steps to ensure that it adequately reflected the included papers. Finally, we synthesised a description of these results.

General description of publications

Thirty-eight publications met our inclusion criteria (identified by Nos. 38-75 in Table 4 ). For a detailed description of the general characteristics of the included publications, see Table 5 . All the included publications belong to argument-based literature; thus, they provide conceptual insights on vulnerability and related concepts (Table 6 ). With respect to the latter, the majority of papers ( N  = 27) presented vulnerability as its object of investigation [ 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 ]; nine publications referred to frailty [ 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 ]; while two publications focused on both frailty and fragility [ 74 ], and vulnerability and frailty, respectively [ 75 ]. Although these are different terms, we considered it acceptable to include publications focusing not only on vulnerability but also on these other two notions. For these to be included, two conditions had to be met: (i) frailty and fragility were used synonymously with vulnerability; and (ii) they were used within argument-based reasoning and not strictly as medical notions or description.

Publication dates ranged from 1984 to 2020, with 17 articles published between 2015 and 2020 [ 40 , 41 , 45 , 48 , 52 , 53 , 54 , 57 , 58 , 59 , 62 , 64 , 65 , 69 , 70 , 73 , 74 ]. Studies from the Americas, Europe, Australia-Oceania, Asia, and Africa are represented in this systematic review; that is, the first author and/or corresponding author was from one of these continents. However, the vast majority of papers came from studies conducted in Europe ( N  = 18) and the Americas ( N  = 16). Even within Europe and the Americas, the authors’ affiliations varied widely. For authors based in Europe, the authors’ affiliation for 13 of the included publications was from an institution in Britain [ 42 , 45 , 47 , 55 , 60 , 69 , 70 , 73 ] or The Netherlands [ 39 , 40 , 53 , 54 , 62 ]. For authors based in the Americas, the affiliation for 12 of 16 of the included publications was from an institution in the US [ 44 , 46 , 48 , 50 , 59 , 61 , 67 , 68 , 71 , 72 , 74 , 75 ].

To be included in this review, papers had to have referred to older adults in aged care, that being a broadly understood term. Most papers ( N  = 22) referred to the category ‘older adults’, without specifying their age, gender or, above all, whether they are affected by a medical condition. Five papers were derived from studies that investigated the condition of older adults living in upper-middle income countries [ 51 , 55 , 56 , 60 , 63 ].

While doing data extraction and synthesis, we realised that most authors of the included publications argued from a specific ethical stance in their paper. We identified nine ethical approaches that authors used. The arguments used in two papers were informed by several approaches, and thus their publications were categorised into more than one ethical approach [ 62 , 74 ]. We also identified several ‘outlier’ publications. These are papers that could not be readily categorised into any one of the nine ethical approaches. However, these outliers still clearly dealt with ethical arguments concerning the topic of vulnerability in aged care.

Our analysis and synthesis supported a fivefold structure of the included publications (Tables 7 and 8 ). This structure could be conceived of as sections. The first section outlines how the concept of broadly defined vulnerability was addressed. The second section focuses on vulnerability in aged care, thus showing how the different accounts of broadly defined vulnerability find their counterpart in this narrower debate. Drawing from the adjusted understanding of the first two sections, the third and fourth sections are manifested as a theoretical conceptualisation of vulnerability in aged care, explaining in detail its defining dimensions. The fifth section relates the findings concerning the means to address aged care vulnerability, with the ethical approaches adopted in the same publications. This showed the relationships between ethical approaches and corresponding strategies for addressing vulnerability in aged care.

Conceptualisation of vulnerability and related concepts: how they are generally understood

The majority of papers ( N  = 20) engaged in the well-known debate over the definition and conceptualisation of vulnerability, as it is broadly understood. This debate encompassed the question about what the concept of vulnerability refers to, in particular, whether it refers to a condition generally affecting human beings as such (namely, what we referred to as ‘basic human vulnerability’) or whether there are some specific situational conditions that make some human beings more vulnerable than others (namely, what we referred to as ‘situational vulnerability’) (Table 7 ).

In 12 out of the 20 papers, vulnerability was defined in terms of basic human vulnerability. Accordingly, most authors considered vulnerability to be a normative concept related to the very essence of our anthropological condition [ 41 ] and a necessary attribution intrinsically affecting humankind [ 38 , 39 , 67 , 74 ]; they conceived of this in different ways [ 67 , 74 ]. Thus, for this definition, being vulnerable means first and foremost being exposed to the experience of ‘human finitude’ [ 38 , 39 , 53 , 54 ], which in turn is related to the certainty of death and the ‘fundamental uncertainty’ characterising the human condition [ 40 ]. Basic human vulnerability means also being open to the possibility of being affected in life by both pleasures and sufferings, as well as experiencing the condition of inter-human dependency [ 40 ]. This latter is also related to the progressive loss of power and/or control that we, as humans, experience during life [ 49 ]. Despite being an innate human trait, basic human vulnerability does not equally characterise all human beings in the same manner, but it varies depending on the individual subject and/or life conditions a subject is experiencing [ 58 , 67 , 74 ]. In this sense, human vulnerability can change over time and in the presence of potential stressors related to poor functional decline; this means that it can be repaired or can worsen [ 38 ].

The authors of the remaining eight papers argued for a definition of vulnerability that is in line with what we term situational vulnerability. According to this definition, vulnerability does not refer to a trait characterising human beings as such, but it describes the condition affecting only some agents who are more likely to be harmed and/or injured than others [ 47 , 65 , 66 , 72 ], due to situational contingent circumstances; these can be social, political, or economic [ 51 , 56 ]. This notion of vulnerability has also a normative connotation, endowed with negative characterisation related to a condition of minority [ 72 ].

The remaining 18 papers were not relevant for this debate about broadly defined vulnerability; they focused only on the concept of vulnerability in the context of aged care.

Conceptualisation of older adults’ vulnerability

All the publications included in this systematic review conceptualised vulnerability in the context of aged care. We noticed that older adults’ vulnerability was presented in terms of one of the three possible conditions: (i) increased basic human vulnerability, (ii) increased situational vulnerability, (iii) both increased basic human and situational vulnerability.

Authors discussing ageing in terms of condition (i) ( N  = 9) argued that traits representing humans as vulnerable—that is, experiencing finitude, being subject to progressive deterioration, and mutual inter-dependence—are amplified when people become old. Accordingly, our analyses showed that being old primarily means experiencing more intensely the state of human finitude because of a heightened and closer ‘connection with our own mortality’ [ 39 , 40 , 66 ]. Being old also means being subjected to a progressive loss of independence, which appears as being totally compromised in some medical conditions (e.g., dementia); this, in turn, progresses to a greater mutual interdependence [ 58 ].

However, the majority of publications ( N  = 25) considered older adults’ vulnerability in terms of condition (ii); that is, vulnerability is the consequence of one or more situational conditions that may accompany old age. These conditions make older adults more ‘exposed’ than other categories of agents to threats or injustices. There may be different kinds of situational conditions, spanning from medical to social, from political to economic conditions, and these more likely result because of their overlap [ 45 , 50 , 55 , 63 ]. In line with this characterisation, older adults may be defined as vulnerable, for example, when they are subjected to ageism; that is, they are discriminated against in many contexts, including healthcare provision, simply due to their chronological age [ 61 , 64 ].

Finally, a small number of publications ( N  = 4) defined older adults’ vulnerability in terms of two dimensions, which is the result of both basic human and situational circumstances [ 43 , 51 , 57 , 74 ]. This two-dimensional vulnerability is based on the idea that there are some situations and practices that add more layers of contingent vulnerability to the aged condition [ 57 ]. This layering is in addition to the vulnerability intrinsic to the human condition.

Dimensions of aged care vulnerability

By analysing in detail both basic human and situational conditions that make older adults vulnerable, we identified in the included papers six dimensions of older adults’ vulnerability: (i) physical; (ii) psychological; (iii) relational/interpersonal; (iv) moral; (v) sociocultural, political, and economic; (vi) existential/spiritual vulnerability.

A first intuitive dimension of aged care vulnerability is represented in the notion of physical vulnerability ( N  = 14 publications). It is physical in the sense that bodily deterioration (i.e., non-pathological and pathological physical/physiological decline) tends to disproportionately affect older adults. Non-pathological age-related deterioration are conditions that can potentially lead to the fragility syndrome: physical instability, reduced mobility, loss of power, problems with vision and hearing, among others. Pathological deterioration, on the other hand, refers to specific pathological conditions that may only affect some specific older individuals, such as illness [ 56 ], dementia [ 42 , 58 , 74 ], and disability [ 48 ].

A second dimension of aged care vulnerability is psychological vulnerability ( N  = 18 publications). Here, we identified both strictly psychological and experiential components, the latter only if correlated with and/or impacting the psychological dimension of humans. Older adults appear psychologically vulnerable because they are subjected to mental health changes [ 42 ] and to progressively diminishing intellectual functioning [ 66 ]. In addition to these cognitive factors, emotional factors also add further layers of vulnerability [ 40 , 46 , 50 , 52 , 56 , 59 , 62 ]. For example, the cumulative loss of loved ones [ 40 ], the absence of emotional support towards the end of life [ 50 ], and the presence of negative social ties [ 47 ] are only some of the conditions that lead older adults to perceive themselves as being psychologically vulnerable. The experiential component deals with the concept of embodiment [ 41 , 49 , 62 , 75 ] and with the psychological implications resulting from a shift from ‘an absent to a non-absent body’ [ 41 ], which predominantly occurs in old age. This body no longer supports the older one in his/her daily activities; rather, it becomes a matter of concern and requires assistance and care. Older adults also feel psychologically vulnerable because their ‘decaying body’ impacts their personal representation [ 75 ].

A third dimension of aged care vulnerability is termed relational/interpersonal vulnerability ( N  = 14 publications). This category deals with the impact of human interdependence in late adulthood and how that relates to vulnerability. Our analysis showed that this concept could be interpreted in two ways: first, as ontological interdependence; second, as interdependence/dependence in real-world settings. While the first interpretation applies to humans in general (and by extension to older adults), the second focuses on the ageing population specifically. Ontological interdependence means recognising the intrinsic relational and social nature of human beings [ 41 ]. Such recognition has two main implications. First, being social creatures, individualistic behaviours are against our nature [ 40 ]. Second, because we are intrinsically relational—i.e., as humans, we cannot easily avoid relations with other humans—we are also vulnerable. This latter vulnerability is considered in our findings both as a positive feature (e.g., we perceive ourselves as sharing the same condition as vulnerable beings) [ 53 , 63 ] and a negative feature (e.g., we all suffer the cumulative loss of loved ones) [ 40 , 41 ].

However, most publications focus on relational/interpersonal vulnerability in terms of interdependence/dependence in real-world settings. Older adults are vulnerable insofar as they progressively become ever more dependent on others. Indeed, due to progressive decline in their physical and cognitive abilities, older adults lose more and more control over their own daily activities [ 71 ], and, in broad terms, lose their decision-making capacity [ 52 , 68 ]. In addition to this vulnerability characterising all older adults, there are some specific conditions that make some older adults more susceptible to further relational/interpersonal vulnerability. This may occur in the case of dependent older adults lacking adequate family support [ 47 , 60 , 71 ] and/or in the case when they have to live alone [ 73 ].

A final aspect of relational/interpersonal vulnerability is found in the sexuality of older adults. As some findings suggest, there is a stigma attached to the expression of sexuality in older adults because of the pervasive belief that older adults are not sexually active or that they are necessarily in heterosexual relationships [ 42 , 58 ].

A fourth dimension of aged care vulnerability is what we defined as moral vulnerability ( N  = 7 publications). Moral vulnerability can take on two meanings. In its positive sense, moral vulnerability is interpreted as care for older adults’ dignity [ 58 ], respect for their acquired wisdom [ 53 , 54 ], and attention to their moral preferences [ 72 ]. In its negative sense, it points to the risk for older adults of being subjected to infantilisation. Infantilisation occurs when empathy goes unexpressed and when older adults are treated as objects [ 56 ]. Infantilisation also underlies the phenomenon of depersonalisation; that is, when older adults are deprived of their personal identity [ 69 ]. Our analysis also revealed that moral vulnerability in its negative sense underlies the stigmatisation of some practices that may help this population to better cope with their personal conditions, such as preventing older adults from receiving palliative care, causing them unnecessary pain [ 57 ].

Most publications considered older adults’ vulnerability to emerge as a result of unfair or unjust sociocultural, political, and economic conditions ( N  = 22 publications). Considering only the sociocultural dimension of this vulnerability, older adults become vulnerable when they are excluded from social life and/or are isolated [ 41 , 42 , 43 , 58 , 69 ]; marginalised [ 42 , 46 ]; and stigmatised [ 42 , 46 , 48 ]. Sociocultural vulnerability affects more females than males [ 50 , 63 , 73 ], and people with low levels of education compared to those who have achieve high levels of education [ 60 , 73 ]. Low levels of social support are also frequently mentioned as a condition for sociocultural vulnerability [ 47 , 51 , 65 , 74 ]. Strictly related to sociocultural dimensions, some publications explicitly referred to forms of economic and political vulnerability [ 42 , 45 , 47 , 50 , 51 , 56 , 61 , 63 , 64 , 66 , 73 , 74 ], the latter including also discrimination in the provision of healthcare [ 61 , 63 , 64 , 73 ], and subjection to unjust judicial systems [ 56 ].

The last dimension of older adults’ vulnerability we identified is existential/spiritual vulnerability ( N  = 15 publications). This kind of vulnerability is part of the broader category of basic human vulnerability. It refers to those existential and/or spiritual conditions that quintessentially characterise humans but are even more represented in the ageing population [ 49 , 51 , 66 , 67 , 70 ]. Older adults are existentially and spiritually vulnerable, because they often more vividly experience human finitude [ 38 , 41 , 51 , 53 , 70 ]; that is, they feel closer to dying and they also disproportionately experience disruption of everyday competences [ 70 ]. Their vulnerability thus appears as a lens through which human experiences are intensified [ 67 p. 144]. Older adults’ existential/spiritual vulnerability is also intrinsically related to the concept of ‘meaning’. In its positive sense, older adults’ vulnerability is characterised in a way that allows life experiences to be interpreted as meaningful [ 40 , 53 , 54 , 72 , 75 ]. In line with this first interpretation, being old represents an opportunity for human authenticity [ 54 ]. In other publications the dimension of existential/spiritual vulnerability may have a negative connotation. In this case, older adults experience meaninglessness and hopelessness [ 42 , 43 , 71 , 72 ].

Additional conditions/issues correlated with aged care vulnerability

In addition to the six dimensions of older adults’ vulnerability, we found that authors indicated that there are also some conditions correlated with older adults’ vulnerability. These may belong to different dimensions simultaneously. These other conditions are depression, loneliness, undertreatment of pain, medicalisation, living situation, and control.

Depression relates to both physical/physiological [ 42 ] and psychological vulnerability [ 53 , 66 ] in terms of its interpretation as a medical or psychological condition.

Loneliness is considered to be one of the main factors correlated with vulnerability. As related to psychological/experiential vulnerability, it appears as the condition that enables older adults to confront the feeling of their own nothingness and/or uselessness [ 43 ]. As related to relational/interpersonal vulnerability, it refers to the reality that most older adults are often alone and deprived of satisfying connections with others [ 43 ]. As related to existential/spiritual vulnerability, it recalls the ontological separation between human beings [ 70 ].

Undertreatment of pain and medicalisation are interesting concepts, since they are not only related to physical vulnerability [ 44 , 72 ] and psychological/experiential vulnerability [ 68 ], respectively, but also can be interpreted as socioculturally sensitive phenomena. This means denying an older person pain relief is considered by some to be a virtuous act [ 44 ], while vulnerability understood as a medical condition confers ‘the legitimation that others have to intervene in older adults’ life [ 69 p. 1044].

When authors refer to living situation, they mean those conditions, either environmental or social, that may create vulnerable situations for older adults. This applies not only to older adults living in dangerous areas and/or unsafe environments [ 48 , 56 , 60 , 66 , 71 , 73 ], but also to those who are disempowered because being subjected to unnecessary hospitalisation [ 56 , 62 , 69 ], for example.

A final factor of vulnerability considers the condition of control. Becoming old leads to the progressive (and physiological) loss of power and control [ 49 , 66 ]. However, besides this condition, some older adults considered themselves illegitimately surveilled by others [ 58 , 68 ].

Means to address aged care vulnerability

Our analysis revealed a close connection between the ethical perspective endorsed by the authors and the suggested approach to address a given vulnerability (Table 8 ). In other words, the ethical perspective through which vulnerability is conceptualised informs the suggested ways to account for or address vulnerability itself.

Our analysis identified three ways, or strategies, to relate to older adults’ vulnerability: (i) understanding older adults’ vulnerability, (ii) taking care of vulnerable older adults, (iii) intervening through sociopolitical and economic measures.

Putting aside the ‘outlier’ publications (see “ General description of publications ” section), strategy (i) is advanced by authors who endorse phenomenology and existentialism, and virtue ethics perspectives. Strategy (ii) is advanced by authors who endorse a principlist approach. Strategy (iii) is advanced by authors who endorse a capability approach, feminist ethics, public health ethics, and analytic political philosophy. Finally, mixed strategies were also evident: Supporters of care ethics hold that older adults’ vulnerability requires both (i) and (ii) strategies, while supporters of personalistic ethics hold that older adults’ vulnerability requires both (i) and (iii).

Understanding older adults’ vulnerability

Proponents of phenomenology and existentialism, and virtue ethics claim that the best way to address older adults’ vulnerability is to first understand it. In five publications [ 41 , 43 , 46 , 62 , 67 ], the authors endorsed an approach that combines aspects of phenomenology and existentialism. Sensitivities of phenomenology and existentialism consider as a grounding assumption the presence of an inevitable layer of vulnerability, namely basic human vulnerability. At the same time, they argue that additional (situational) layers of vulnerability can emerge only within the first-person perspective of the older adult and his/her experiences. While vulnerability as a metaphysical status characterises all human beings and may be generalised [ 43 ], vulnerability as a situational condition appears as a unique and non-generalisable tenet of the specific older adult under consideration [ 41 , 43 ]. Addressing older adults’ vulnerability therefore requires understanding the very essence of older adulthood as being intrinsically affected by some layers of basic human vulnerability [ 67 , 70 ]. However, it also means addressing it by thoroughly investigating the inner feelings and sensation of specific older adults, all of whom likely have heterogeneous experiences [ 41 , 62 ].

Two publications [ 53 , 58 ] ground their claims in a virtue ethics approach, the latter interpreted using elements of accounts of Aristotle, MacIntyre, and Swanton. Within a virtue ethics approach, vulnerability as an existential condition has a very important role. Indeed, given that vulnerability, dependence, and affliction are intrinsic human characteristics, the underlying philosophical assumption of virtue ethics is that it is essential to recognise and experience existential vulnerability in order to fully express one’s human nature. However, it is precisely the exercise of virtues that enables individuals ‘to confront and respond to vulnerability and dependence in ourselves and others’ [ 58 p. 968]. Virtues and vulnerability are therefore strongly correlated. According to a virtue ethics approach, older adults’ vulnerability should be understood as an existential condition, not necessarily having a negative connotation. Moreover, since it emphasises life-encompassing moral development, virtue ethics assumes the potential for development to unfold throughout the entire life course. This means taking older individuals seriously as moral agents [ 53 ].

Taking care of vulnerable older adults

Three publications [ 38 , 44 , 52 ] used a principlist approach to ethics. Principlism represents the major approach of contemporary Anglo-Saxon biomedical ethics. Functioning ‘as an analytic framework of general norms derived from the common morality that form a suitable starting point for biomedical ethics’ [ 76 p. 13], principlism is based on four prima facie moral principles, namely respect for autonomy, non-maleficence, beneficence, and justice. Respect for autonomy is clearly linked to humans’ self-determination, which is usually defined as allowing one to make informed decisions about one’s own life and permitting one to act accordingly. Non-maleficence is essentially a translation of the Hippocratic oath, primum non nocere (i.e., first of all do not harm), while beneficence refers to the consequentialist duty of maximising the patient’s benefit. The principle of justice regulates the relationships between individuals regarding health, requiring also to apply fair procedures in the allocation of health resources across individuals.

Our analysis showed that authors adopting principlism argued that the best means to address older adults’ vulnerability is to protect vulnerable individuals [ 38 ]. Protection is intrinsically related to respect for persons. As the Belmont Report suggests [ 13 ], individuals incapable of self-determination should be granted appropriate protection. Being incapable of self-determination is one of the conditions defining vulnerability. We also observed that protecting older adults means preserving older adults’ capacity of self-determination (i.e., autonomy) as much as possible, while also promoting their well-being [ 52 ]. One threat to well-being in older adulthood is untreated pain. Protecting vulnerable adults also means actively promoting older adults’ pain relief [ 43 ].

Intervening through sociopolitical and economic measures

A third proposed strategy to address older adults’ vulnerability is to intervene through sociopolitical and economic measures so as to minimise vulnerability as much as possible. Supporters of this view advocate four approaches: the capability approach, feminist ethics, public health ethics, and analytic political philosophy. Precisely because they believe that older adults’ vulnerability is the result of unfair sociopolitical and economic contingent conditions, these authors endorse a situational definition of vulnerability. It follows, then, that vulnerability may be reduced by intervening through these approaches.

Two publications endorsed a capability approach [ 45 , 65 ]. This normative framework discerns three main elements—well-being, functioning, and capabilities—and argues that freedom to achieve well-being is of primary moral importance. Well-being is interpreted in terms of people’s capabilities and function. Looking at the debate over aged care vulnerability through the lens of the capability approach means first to individuate older adults’ well-being, functioning, and capabilities. Our analysis showed that older adults’ well-being corresponds to autonomy, broadly considered. Functioning means remaining autonomous, while capabilities refer to the set of social assets that prevent older adults from losing their autonomy [ 45 , 65 ]. According to the capability approach, older adults’ vulnerability is neither a descriptive (and necessary) condition correlated to ageing, nor is an existential phenomenon. Vulnerability, however, is a normative status that public health authorities must properly address and, if possible, prevent [ 65 ].

A similar answer comes from the proponents of public health ethics approaches [ 56 , 71 ] and analytic political philosophy [ 64 ]. These approaches are characterised by the conviction that health is not only an individual condition, resulting from the biological constitution of the individual herself, but is a complex phenomenon that results additionally from unjust economic systems. When applied to middle income countries [ 56 ], public health ethics is narrowly defined as the domain of ethics investigation interested in ‘social justice, poverty, and systematic disadvantage’ [ 56 p. 186]. Within these approaches, vulnerability is not only a situational but also a ‘multi-layered condition’ [ 56 ], that is, the results of different simultaneous conditions. This means that vulnerability should be disassembled to reveal its constituent components in order to find contextual and targeted strategies to address them (e.g., against economic vulnerability, improving the pension system; against housing vulnerability, increase investments in geriatric institutions). It also means that a ‘one-size-fits-all’ solution is inappropriate to address older adults’ vulnerability, the latter being the result of contingent and situational conditions. In other words, vulnerability ‘is seen as a condition of lived experience reflecting the intersection of unique individual factors and proximal and distal environmental factors’ [ 71 p. 225]. The publication informed by an analytic political philosophy approach [ 64 ] focuses on discrimination in health and argues that such discrimination, often labelled as ageism, may be the most important cause of older adults’ vulnerability, even in high income countries.

Feminist ethics approaches [ 50 , 69 , 74 , 75 ] apply the entire body of reasoning typical of public health ethics and analytic political philosophy approaches to the debate over gender. They stress that older woman are the ones mostly disadvantaged, the most vulnerable among the vulnerable. This is because  more older women are materially poorer than men. Because women have a higher life expectancy, they spend part of their life without a spouse. Because women live longer than men, they present more comorbidities than men. Finally, they are usually subjected to a hostile cultural climate (e.g., are mostly considered on the basis of their physical characteristics, youth, sexual and/or reproductive functions). Against such a backdrop of vulnerabilities, authors advocating these approaches suggest that intervention should be done through sociopolitical actions. On the one hand, they promote equal treatment, equal opportunity, and equal respect at the public level to reduce existing gender-based inequalities. On the other hand, they work on those ‘social interrelations and organizational practices, through which agency is dispersed’ [ 69 p. 1045].

In addition to these situational vulnerabilities, one publication [ 75 ] also points to the impact that a ‘decaying body’ has for older women. A ‘decaying body’ appears to be more difficult to accept, because of its role in relational and care practices, as well as in reproductive practices. That author proposes to recover what she labels as an ‘empowered feminist ethics’. This effort should not only help older women to ‘deal with the bodily changes that are authentically connected to aging’ [ 69 p. 79], but also to intervene on a public level. The latter would aim to promote actions that change the social environment in which such convictions originate [ 69 , 75 ].

Mixed answers to older adults’ vulnerability

Our analysis showed that authors using care ethics and personalistic ethics approaches proposed addressing older adults’ vulnerability by employing mixed strategies. Care ethics is an approach grounded on the conviction that there is moral significance in the fundamental elements of (care) relationships and dependencies in human life. Accordingly, care ethics seeks to maintain and promote care relationships by contextualising the well-being of caregivers and care-receivers in a network of social relations. Proponents of the care ethics perspective argue that vulnerability must be properly understood and ‘digested’. At the same time, it remains extremely important to protect vulnerable older adults, balancing instances of protection with the older adults’ desire of autonomy [ 46 ]. It is precisely within care relationships, and through an empathic understanding between caregivers and care-receivers [ 46 ], that older adults’ vulnerability may be properly understood [ 74 ]. Such vulnerability has a twofold nature, one endowed with both situational and intrinsic elements. For situational elements, it is important to realise that vulnerability may become a social construction, one emerging during the healthcare encounter [ 68 ]. Indeed, ‘the transformation from lived problem to diagnosis, then to treatment plan, then to rules about what ought to be done, and finally to negotiated compliance is the form the social construction of frailty takes in the context of health care’ [ 68 p. 54]. However, older adults, especially when hospitalised, are also intrinsically vulnerable. This is because their vulnerability results from complex lifeworld dimensions, including mood (i.e., their inner state); embodiment (i.e., their physical as well as their lived body dimensions); intersubjectivity (i.e., how they are in relation with others); and space and time (both objectively and subjectively interpreted) [ 62 ].

Finally, one publication [ 51 ] was informed by a personalistic ethics approach. Personalistic ethics draws from Schotsmans’ account (1999) and states that persons are unique and original, relational and inter-subjective, and that communication and solidarity are very important for human beings [ 51 ]. The author endorsing the personalistic ethics approach argued that vulnerability as an existential condition should be understood in its complexity. However, when situational elements are also present—namely, lack of economic security, health problems, insufficient social support—these should be actively addressed through focused sociopolitical and economic actions. The situational elements affect some older adults, in particular, those in developing countries.

Although concerns for vulnerability are central to bioethics reflection, the concept of vulnerability is still mostly under-theorized in the corresponding literature [ 4 ], especially in the context of aged care. We addressed this theoretical shortfall in the present systematic review of argument-based ethics literature by answering four research questions about the meaning of vulnerability, how it differs from similar concepts like fragility, the ethical arguments for discussing vulnerability in aged care ethics, and possible obligations following from recognising older adults’ vulnerability. We arrive at a more refined and nuanced systematisation of the different conceptualisations of older adults’ vulnerability as present in current bioethics literature as a result.

While vulnerability as a concept is a bit murky, some exceptions are represented by research ethics and, to a lesser extent, public health ethics. Within the former, the majority of scholars endorse the so-called ‘labelling approach’ [ 4 , 13 ]. This approach labels a priori individuals or groups of individuals as being vulnerable according to the presence or absence of particular characteristics, namely, lack of capacity to consent to research, increased susceptibility to coercion or exploitation, and increased risk of harm. Criticizing such an approach as being too broad [ 77 , 78 ] or too narrow [ 11 ], other scholars embrace ‘analytic approaches’ to understanding vulnerability [ 79 ]. Rather than identifying a priori populations, they aim to define sources and implications of vulnerability. Kipnis, for instance, proposes an account based on seven potential sources of vulnerability understood as ‘precariousness’ [ 80 p. 108], while Hurst suggests a wider range of remedies to ameliorate the vulnerability of research participants [ 3 ]. However, despite its promises, even this approach turned out to be less nuanced and context-based than originally envisaged.

In public health ethics, vulnerable populations are defined as ‘social groups who have an increased relative risk or susceptibility to adverse health outcomes’ [ 81 p. 70]. Although factors leading to such increased risk of adverse health outcome may vary, there is consensus in defining individuals as being vulnerable when they are incapable of safeguarding their own needs and interests adequately [ 82 p. 283]. Therefore, vulnerability is considered to be both a marker of social, political, and economic disadvantage correlated with poor health conditions, and/or as a feature of those who already have some forms of ill health, which increases their risk of further ill health.

Even within these domains, however, extensive debate failed to lead to the development of a comprehensive account of vulnerability [ 4 ]. Therefore, a satisfying and appropriate theorization is still missing. Reasons for this are plenty, spanning the contention that vulnerability should not be used as a substantive concept [ 5 ], to the acknowledgment of the difficulties in defining this concept [ 3 ], or even fixing its meaning in its broad-ranging connotations.

If applied to our specific context of investigation, no systematic and updated work on vulnerability, when referring to older adults, is present in the literature. Here, we present an analysis of relevant publications from 1984 to 2020 appearing in the philosophical, bioethical, and medical anthropology literature. The main findings are highlighted and discussed in depth next, with the ultimate aim of gaining a better understanding of how to properly deal with vulnerable older adults.

Basic human vulnerability versus situational vulnerability: general considerations

The first main finding from our analysis is that the way vulnerability is conceptualised in the included publications is in line with the way the same concept is discussed in the current philosophical and bioethics literature. In the 38 publications we analysed, the authors tend to support one of two views of vulnerability. First, vulnerability is an inherent trait of human nature, an ontological condition of our own humanity, belonging to both embodiment – in turn related to propensity to disease and sickness, to impairment and disability, but also to death [ 7 p. 29] – and sociality and interdependence [ 9 ]. This is also referred to as basic human vulnerability. Second, vulnerability is the consequence of contingent unfair social, political, economic conditions; this also is referred to as situational vulnerability. While the first view of vulnerability has appeared in the literature under the guises of persistent [ 83 ], philosophical [ 1 ], anthropological [ 2 ], universal [ 9 ], or existential [ 39 , 40 ] vulnerability, the second view has been mainly referred to as variable [ 83 ], political [ 1 , 2 ], contingent [ 11 , 39 , 40 ], or extrinsic [ 11 ] vulnerability. Despite differences in their nomenclature, their content largely overlaps. Only in one publication did the author refer to both kinds of vulnerability [ 51 ], recognising that basic human and situational vulnerability are not necessarily mutually exclusive [ 51 , 55 , 84 , 85 ]. His view of vulnerability is that the two may actually coexist, with one encompassing a more complex and multi-layered understanding of vulnerability (see below). These two views of vulnerability are mainly supported by different philosophical and bioethical approaches. Whereas the basic human vulnerability perspective is mainly advanced by authors leaning towards continental philosophy—in particular phenomenology and existentialism, and by advocates of ethics of care—the situational vulnerability perspective is advanced by authors advocating analytic philosophy and social science approaches.

In the context of aged care, supporters of basic human vulnerability tend to conceive of aging as a condition of increased basic human vulnerability, while supporters of situational vulnerability claim that aging may be conceived of as a condition of increased situational vulnerability. Despite their differences, both accounts share the idea that older adults already are, or may become, more vulnerable, because some of the conditions that determine vulnerability itself are increasing. For the basic human vulnerability view, these conditions include ever-increasing human finitude with age (experiencing human mortality more vividly). For situational vulnerability, these conditions include contingent extrinsic circumstances. Few exceptions exist, since the authors of four publications [ 36 , 44 , 51 , 65 ] recognised the twofold nature of aging as a condition of both basic human vulnerability and situational vulnerability. Interestingly, our analysis showed that older adults’ vulnerability is never framed in terms of ‘pathogenic vulnerability’ [ 4 ], that is, vulnerabilities generated by misplaced or wrong answers to pre-existing vulnerabilities. However, if we focus on the ‘generators’ of pathogenic vulnerability’ as identified by Rogers and colleagues – namely, ‘morally dysfunctional interpersonal and social relationships characterized by disrespect, prejudice, or abuse, or by sociopolitical situations characterized by oppression, domination, repression, injustice, persecution, or political violence’ [ 4 p. 25] – then some interpretations of situational vulnerability may fall in this category. This occurs, for instance, with wrong answers to ‘relational/interpersonal vulnerability’ in case of dependent older adults. Older adults subjected to unnecessary hospitalisation or institutionalisation [ 56 , 62 , 69 ] – what we referred to as vulnerabilities related to ‘living situation’ – or illegitimately surveilled by others [ 58 , 68 ] – what we referred to as vulnerabilities related to ‘conditions of control’ – may provide some examples of pathogenic vulnerability. Again, some forms of ‘moral vulnerability’ in its negative connotation may be considered as examples of pathogenic vulnerability: preventing older adults from receiving palliative care [ 57 ] as a consequence of stigmatisation goes precisely in this direction.

Another major finding of our analysis of the meaning of vulnerability in the context of aged care relates to dimensions of aged care vulnerability. We call these dimensions (i) physical; (ii) psychological; (iii) relational/interpersonal; (iv) moral; (v) sociocultural, political, and economic; and (vi) existential/spiritual vulnerability. By considering them as a whole, it becomes apparent that they map onto known defining features (and related vulnerabilities) of the human person. This observation gives weight to the view that vulnerability represents an inherent feature of humans, whereby being human and being vulnerable are largely coextensive notions. At the same time, however, the overlap between being human and being vulnerable is not a perfect match. The notion that the concept of vulnerability encompasses some fundamental traits of being human (e.g., experiencing finitude, being susceptible to physical and/or emotional wounds), does not mean that some other human traits realised in the future will also map onto the concept; they may not. It is recognised that this is true to the extent that being human is also defined, among others, by the capacity of being a rational agent, one endowed with moral agency, one looking for meaning, one open to transcendence, etc.

By defining vulnerability as a fundamental human trait, one may assume that vulnerability is a morally neutral notion. However, our analysis of the literature showed that vulnerability is mostly a value-laden concept, endowed with both positive and negative connotations. For example, vulnerability is clearly endowed with positive meaning when it is conceived of as a fundamental condition for human interconnectedness. This condition promotes genuine relations (relational/interpersonal vulnerability). Or when one’s vulnerability in late adulthood becomes an opportunity for authenticity, it may allow one to look at one’s life as acquiring new meanings (existential/spiritual vulnerability). On the other hand, this notion of vulnerability may take on a negative connotation insofar as it subjects older adults to infantilisation, depersonalisation, and objectification (moral vulnerability) but also to isolation, marginalisation, and stigmatisation (sociocultural vulnerability).

One of our research questions concerned the potential correlation between the acknowledgment of vulnerability and corresponding moral obligations. Accordingly, we asked whether vulnerability should be regarded as an independent moral concept, one that can generate moral obligations per se, or whether responses to vulnerability should necessarily appeal to other concepts or values (e.g., respect for persons, preventing harm). This also relates to other related questions, namely, whether moral obligations uniquely follow from the recognition of situational vulnerability, or are generated by basic human vulnerability as well; and to what, if any, these moral obligations amount to. This is a compelling and debated question in the philosophical and bioethical literature on vulnerability. The majority of scholars do claim that vulnerability is per se a source of moral obligations [ 86 , 87 , 88 ], though they variably interpret the content of such obligations, as well as the definition of who is responsible for fulfilling these obligations. Drawing from the consideration of vulnerability being related to relationships of dependency and interdependency which may expose human beings to harm and exploitation, Goodin, for instance, formulates the ‘Principle of protecting the vulnerable’ [ 86 ]. In his view, we have an obligation to act so as to prevent harms to, or protect the interest of, those who are especially vulnerable to our actions and behaviours [ 86 ]. More recently, Reader claims that vulnerabilities arise from needs, that we, as humans, all have [ 88 , 89 , 90 ]. However, in his view, not all needs are equally morally demanding, but only ‘vital needs’, the latter not being limited to bodily sustenance and protection, but defined broadly in relation to context-specific situations and personal identity [ 88 ]. On the other side of the spectrum, other scholars suggested that moral obligations cannot derive from vulnerability alone but from vulnerability-related factors. Hurst, for instance, argues that is ‘the increased likelihood of incurring additional harm or greater wrong’ [ 3 p. 195] which creates the obligation to protect those who are more than ordinarily vulnerable.

In our included papers, it is not only situational vulnerability [ 44 , 45 , 50 , 51 , 53 , 56 , 64 , 65 , 69 , 71 ], but also basic human vulnerability [ 43 , 44 , 46 , 53 ], that is considered a source of moral obligations. Regarding the content of moral obligations arising from vulnerability, most of the publications we analysed focused on and promoted aged care in broadly conceived terms [ 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 48 , 50 , 52 , 57 , 59 , 63 , 68 , 69 , 72 , 74 , 75 ]. In particular, one’s attitude towards care, which is interpreted as both understanding the vulnerability of and protecting older adults, constitutes the most appropriate and fundamental response to vulnerability. This finding strengthens the idea that care is a defining practice of being human. Care and vulnerability are intrinsically linked as instances of humans. This does not mean, however, that vulnerability is ‘erased’ once it is recognised as such. Rather, it means that only after having recognised the existence of a universal basic human vulnerability and after having understood that some human beings are more vulnerable than others, a proper and targeted response may then be put in place. This is especially true for advocates of situational vulnerability.

Older adults’ vulnerability as a multi-dimensional concept

When grappling with the concept of vulnerability in a concrete way, the authors end up integrating elements of both basic human vulnerability and situational vulnerability. This is the case even though almost all the authors claimed to endorse just one of the two accounts. It seems reasonable to suggest, then, that a binary understanding of the concept of vulnerability in aged care is inappropriate.

Our systematic review provides some evidence towards the understanding of vulnerability in aged care as preliminarily conceptualised by some scholars in contemporary bioethics. The current tendency is to characterise older adults’ vulnerability in terms of layers [ 84 , 85 , 91 ], or, as our analysis showed, in terms of dimensions of vulnerability, rather than populations that are a priori vulnerable. The a priori notion is still the prevailing tendency in research ethics [ 15 , 16 , 17 ], mainly for pragmatic and precautionary reasons.

This systematic review also revealed a perspective on vulnerability that holds that a stable (i.e., age-independent) dimension of vulnerability can be identified, one that pertains to all humans. This is reasonable since we all share the same (finite) human condition. However, this new understanding also allows for some dynamic dimensions of vulnerability. As dynamic dimensions are not necessary conditions, they may or may not be present. Situational conditions (e.g., socioeconomic, political, unfair conditions) and fundamental dimensions pertaining to human life (e.g., progressive bodily deterioration) determine this dynamism.

If a proper understanding of vulnerability is partly a matter of recognising that layers or dimensions of vulnerability exist, then vulnerability is not necessarily a black or white condition but may be a condition comprising various degrees of vulnerability. Moreover, such a view permits one to foresee conditions that render the same person, or category of persons, as situationally vulnerable in some instances but not in others. One may become more or less vulnerable when additional levels of vulnerability are acquired or lost during the course of life.

Finally, if vulnerability is a multidimensional and complex phenomenon, then the objections raised in bioethics literature to ‘monodimensional’ accounts of vulnerability, either situational or basic human, tend to collapse. Indeed, considering vulnerability only as a trait of human nature may have the implication of ‘naturalising’ vulnerability [ 91 ], considering it as something that ‘cannot be reduced or remedied’ [ 1 p. 397], that is, an unavoidable phenomenon related to human existence. On the other hand, interpreting vulnerability only as the consequence of situational or contingent situations, may present the danger of non-acknowledging some fundamental traits of the human condition, e.g., the precariousness deriving from being mortal, considering these traits as personal deficits, rather than essential human features. In other words, if vulnerability is both a defining characteristic of our own humanity and an additional condition affecting some people in specific contingent situations, then understanding vulnerability, taking care of vulnerable persons, and intervening through sociopolitical and economic measures all become strategies to be synergistically adopted to respond to vulnerability.

Strengths and limitations

The main strength of this systematic review is the large number of publications that contributed to our analysis. Most of them were published in the last five years. Also, the analysed publications reported on studies conducted in countries across the globe. Therefore, we believe these characteristics strengthened our conclusions.

Although our study produced new insights into the meaning, foundations, and uses of vulnerability as an ethical concept in the literature on aged care, it had a few limitations. Some may question that the variety of expressions used (vulnerability, frailty, fragility) may have potentially created some confounding factors in results comparisons. However, we considered this variety to be acceptable as long as these notions were used as synonyms of vulnerability in the publications and were used within argument-based reasoning, rather than strictly as medical terms. Secondly, we considered only publications written in English. Moreover, this research was conducted before the Covid-19 pandemic, so any potential impact it might have had on the understanding and uses of the concept of vulnerability were precluded. Intuitively, it is reasonable to assume that older adults’ vulnerability was greatly impacted [ 92 ]; future ethical analyses will determine whether the Covid-19 pandemic prompts us to modify pre-pandemic conclusions. Investigations about older adults’ vulnerability before and after Covid-19 may be highly relevant for future lines of research, especially those drawn towards understanding how vulnerability as an ethical concept affects delivery of healthcare to older individuals.

Availability of data and materials

All data generated or analysed during this study are included in this published article in Table 4 . Additionally, the full list of QUAGOL schema are not publicly available due to privacy concern but are available from the corresponding author on reasonable request.

Abbreviations

Preferred reporting items for systematic reviews and meta-analyses

Qualitative analysis guide of Leuven

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Acknowledgements

The authors wish to thank Alice Cavolo for her very precious advice and comments at various stages of the writing of this paper. We also thank the three anonymous reviewers who contributed to improving the quality of the paper.

This work was originally conceived under the Project INNOVAcaRE (“Enhancing Social Innovation in Elderly Care: Values, Practices, and Policies”) and then supported by the Project ElderTech (“Emerging technologies and vulnerabilities in aged care”), both funded by Fondazione Cariplo.

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VS wrote the paper, conducted the literature search, worked out most of the search and analysis methods employed, analysed and synthesized the material, and revised and finalised the manuscript. CG originated the idea of conducting a systematic review of argument-based ethical literature on vulnerability in aged care, assisted in devising the search algorithms, cross-checked publication selection, analysed and synthesised the material, and revised the final manuscript. RS provided input on the original idea and revised the manuscript. All authors read and approved the final manuscript.

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Sanchini, V., Sala, R. & Gastmans, C. The concept of vulnerability in aged care: a systematic review of argument-based ethics literature. BMC Med Ethics 23 , 84 (2022). https://doi.org/10.1186/s12910-022-00819-3

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A systematic review to identify the use of stated preference research in the field of older adult care

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In the design of long-term care systems, preferences can serve as an essential indication to better tailor services to the needs, wishes and expectations of its consumers. The aim of this systematic review was to summarize and synthesize available evidence on long-term care preferences that have been elicited by quantitative stated-preference methods. The databases PubMed and Web of Science were searched for the period 2000 to 2020 with an extensive set of search terms. Two independent researchers judged the eligibility of studies. The final number of included studies was 66, conducted in 19 different countries. Studies were systematized according to their content focus as well as the survey method used. Irrespective of the heterogeneity of studies with respect to research focus, study population, sample size and study design, some consistent findings emerged. When presented with a set of long-term care options, the majority of study participants preferred to “age in place” and make use of informal or home-based care. With increasing severity of physical and cognitive impairments, preferences shifted toward the exclusive use of formal care. Next to the severity of care needs, the influence on preferences of a range of other independent variables such as income, family status and education were tested; however, none showed consistent effects across all studies. The inclusion of choice-based elicitation techniques provides an impression of how studies operationalized long-term care and measured preferences. Future research should investigate how preferences might change over time and generations as well as people’s willingness and realistic capabilities of providing care.

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Introduction

Population aging, especially in developed countries, has long been recognized as a global phenomenon, with varied magnitude and projections worldwide. With the increasing population of older adults, substantial pressures are placed on national health and social care systems to adequately prepare for future challenges. The population of older adults aged 80 years or above is predicted to rise globally from 137 million in 2017 to 425 million in 2050 (United Nations, Department of Economic and Social Affairs, Population Division 2017 ). As an increase in age often coincides with an increasing likelihood of becoming care dependent, one major challenge that emerges is the delivery and financing of long-term care (LTC). In Europe, expenditure on LTC is expected to increase by 80% from 2015 to 2060 (Global Coalition on Aging 2018 ). According to the latest calculations of 2019, population aging will lead to an increase in the number of consumers of LTC services (United Nations, Department of Economic and Social Affairs, Population Division 2019 ).

When a person becomes care-dependent and requires support from others, that person can generally either receive care in a home-based, community, or institutional setting. In a home-based setting, in most instances, one or more informal caregivers are actively involved in providing care. Formal caregiving provided by a professional service often complements informal caregiving in a home-based setting, however, formal caregivers could also be the sole care-provider. The proportion of informal to formal caregiving varies internationally. This can be partly explained by the manner in which LTC systems are organized, which differ substantially across countries with regard to their funding sources, entitlements, service providers, access, LTC workforce, and quality control measures (Royal Commission into Aged Care Quality and Safety 2020 ). Additional influencing factors might be diverging views on the responsibility for providing care (family vs. government), different normative beliefs and perceived barriers to caregiving as well as individual willingness to provide care (Hoefman et al. 2017 ). Other societal changes, such as increasing employment rates of women, larger geographical distances between family members, and a growing number of single-person households, might also play an important role (Broese van Groenou and de Boer 2016). Such societal changes, alongside demographic developments and a rising demand for high-quality care, increase the pressure for national governments to act and establish sustainable and affordable LTC systems (Royal Commission into Aged Care Quality and Safety 2020 ).

In the designing of LTC systems, preferences can serve as an important indication to better tailor services to the needs and wishes of its consumers. Recently, there has been an increase in the involvement of patients and the general public in healthcare decision-making (Coulter 2012 ; Litva et al. 2002 ). In systems with limited resources, it is important to know which aspects of LTC are most and least important to people. Integrating people’s preferences in the design of services and products has also been linked to improved quality of care, quality of life, and overall well-being (Swift and Callahan 2009 ). Stated preference (SP) methods are used to ask participants directly about their preferences. Quantitative techniques can be used to infer people’s preferences by measuring a change in their utility function. As people are asked to trade-off between different aspects of care, it is possible to generate a ranking of said preferences. Examples of SP methods are contingent valuation (CV), best–worst scaling (BWS), discrete choice experiment (DCE), and other ranking or rating techniques (Klose et al. 2016 ). In the field of older adult care, SP methods have been increasingly applied since the last 10 to 15 years.

Preferences in the field of older adult care are multifaceted. It depends on multiple factors such as the study population, country in question, and the study’s perspective and focus. The broad thematic use of SP studies in the field of older adult care is mainly motivated by the complexity of LTC. Therefore, some studies have investigated preferences for specific LTC services (e.g., home-based care packages) in order to make preference-based suggestions for the improvement of LTC service designs (Lehnert et al. 2018 ; Chester et al. 2017 , Kampanellou et al. 2019 ). Thereby, LTC services are decomposed into a set of attributes in order to measure underlying preferences with the help of the choices made by the respondents. Other studies used instruments to measure caregiver’s outcomes or investigate the suitability of different forms of LTC, providing an indirect measure of what LTC should look like according to people’s preferences (Al-Janabi et al. 2011 ; Milte et al. 2018a ). In a recent scoping review by Lehnert et al. ( 2019 ), stated preferences for LTC were reviewed and summarized. It identified 12 qualitative, 40 quantitative, and seven mixed-methods studies in the field from a database search in February 2016. This systematic review builds upon the scoping review by additionally capturing the period from February 2016 to October 2020 and including preferences for nursing home as well as dementia care. The aim of this review is to summarize and synthesize available evidence on LTC preferences that have been elicited by quantitative SP methods.

A systematic literature review was performed to identify original SP studies in the field of older adult care. Among others, these studies measure people’s willingness to provide care or their preferences for different LTC services (informal or formal). The systematic review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines (Moher et al. 2009 ).

Search strategy and information sources

The literature search was conducted in September 2019 and updated in October 2020 using the scientific databases, PubMed and Web of Science. The search strategy combined English terms for older adult care [ care OR nursing OR elderly care OR long-term care OR LTC OR home care OR older adult care ] in search block A with search terms for SP elicitation methods [ stated preference(s) OR time trade-off OR TTO OR standard gamble OR conjoint OR contingent valuation OR discrete choice OR DCE OR willingness-to-pay OR WTP OR analytic hierarchy process OR AHP OR choice model OR best–worst scaling OR BWS OR willingness-to-accept OR WTA OR multi-criteria decision analysis OR MCDA OR multi-attribute utility OR MAUT ] in search block B. Search terms for block B were selected with the help of the literature survey on methods to perform systematic reviews of patient preferences by Yu et al. ( 2017 ). The Boolean operator “AND” combined the search terms of block A and B. Database-specific adjustments were made in block A in Web of Science by leaving out the search terms “care” and “nursing,” as these yielded a very high number of unspecific search hits in the database. Only one database-specific search filter was used in PubMed, specifically limiting the species to only humans. The timeframe was set to exclude studies published prior to 2000.

Eligibility criteria and study selection

The selection process was based on a set of pre-defined inclusion and exclusion criteria. Studies were deemed eligible for inclusion if they (1) reported peer-reviewed, original quantitative data using SP methods such as DCE, BWS, CV, or other ranking or rating techniques, (2) were published in English or German, (3) were published in or after the year 2000, and (4) were focused specifically on LTC preferences of older adults in need of care. Studies were excluded if they (1) did not report original, peer-reviewed data (such as poster sessions, book chapters, reviews, reports and letter to the editors), (2) used qualitative or revealed preference methods to elicit preferences, (3) were published prior to 2000, or (4) focused on illness-related care, end-of-life care, or telecare. Studies focusing on specific illnesses or palliative care were excluded because of their tailored care needs and medical interventions that differ from general older adult care. Care for common cognitive and physical signs of old age such as incontinence, memory loss, and dementia were exempted from illness-related care and therefore included in this review. Based on these criteria, two independent researchers (de Jong, Damm) made a first selection by screening the titles and abstracts. Following the first selection, full texts of the remaining studies were screened and judged for inclusion. In case of disagreement, a third reviewer was consulted. Reference lists of included studies were hand-searched by the lead author.

Data extraction and quality appraisal

Key characteristics of each study were extracted and collected in an extensive Microsoft Excel file. The extracted characteristics included the year of publication, country, aim of the study, characteristics of the study participants, sample size, instrument design including the software used, attributes and levels if applicable, data analysis, and key findings. A summary of key characteristics is presented in Table 1 and a detailed overview of selected characteristics is presented in Tables 2 , 3 , and 4 . Tables 3 , 4 and 5 additionally include the content-related assignment of each study into one of the four main entities (or “blocks”) identified below. The quality of this systematic review was ensured using the PRISMA 2009 Checklist (Moher et al. 2009 ). The quality of the included studies was assessed using the PREFS ( Purpose, Respondents, Explanation, Findings, Significance ) checklist (Joy et al. 2013 ). According to the PREFS checklist, studies are ranked on a scale from zero to five, with five indicating the highest methodological quality. Two researchers (de Jong, Damm) independently judged the quality of the studies. Table 5 presents an overview of the quality scores of the included studies.

In total, the search strategy yielded 8,516 articles to be screened for eligibility. After the removal of duplicates, two independent researchers screened and assessed 6,764 titles and abstracts with a set of predefined inclusion and exclusion criteria. As a result, 122 remaining full texts were assessed, of which 59 were ultimately included. Full texts with a different methodological or thematic focus, for instance, care needs or preferences for LTC insurance coverage were excluded. The reference lists of the included studies were additionally screened, which yielded another nine studies to be included. In total, 68 studies were included. The study selection process is shown in Fig.  1 .

Flow diagram

Results of the quality appraisal

The results of the quality assessment are presented in Table 1 . According to the checklist, most studies were deemed to have a good or very good quality. Three studies adequately addressed all five elements of the PREFS Checklist, and a further 46 addressed four out of five elements. Most often, studies did not report any evidence on differences between responders and non-responders of the sample, thereby neglecting to adequately assess potential selection bias. As preference studies often do not possess information on non-responders, other reviews have decided to disregard this area of the checklist from the appraisals (Lepper et al. 2020 ). Seventeen additional studies adequately reported three out of five elements of the checklist. Two studies adequately reported on less than three elements and were therefore excluded from the final sample (Chan et al. 2000 , Li and Wang 2016 ). The results of the remaining 66 studies are described in the following sections.

Description of included studies

The included studies were published between the year 2000 and 2020 and the majority were conducted in China ( n  = 16) and the USA ( n  = 18). Two studies collected data from multiple countries, particularly from the UK, Spain, USA, and Sweden (Gustavsson et al. 2010 ) and Germany and the USA (Pinquart and Sörensen 2002 ). In total, studies conducted in 19 different countries were included. An overview of study characteristics is shown in Table 1 . Barring two studies that investigated preferences over time (Wolff et al. 2008 ; Abbott et al. 2018 ), the remaining used a cross-sectional design. The sample size ranged from 28 (Chester et al. 2017 ) to 244,718 respondents (Roberts and Saliba 2019 ). The share of women in the sample ranged from 38.2% (Qian et al. 2017 ) to 100% (Kasper et al. 2000 ; Wolff et al. 2008 ). The majority of the included studies ( n  = 38) surveyed a sample of the general population, mostly older adults aged 65 years and above. Eight studies included care-dependent older adults and eight informal caregivers or family members. Ten studies used multiple groups of study participants for their analysis, specifically, care-dependent older adults as well as their primary caregivers or family members as proxy. Most often ( n  = 44) the surveys were administered via telephone or face-to-face interviews to enable participants to ask questions. Next to descriptive statistics, most studies additionally used inferential statistics to analyze their findings. Multinomial logistic regression, conditional logistic regression, and mixed logit models were most frequently used.

The included studies ( n  = 66) investigated different facets of LTC. For this systematic overview, studies were grouped into four main entities:

Preferences for different LTC options and factors influencing these preferences: Twenty-eight studies exclusively focused on the preferred type of care in case the participants became care-dependent and its influencing factors (e.g., age, gender) that might explain respondent’s preferences. Participants were asked to choose their preferred LTC option from a set of pre-specified categories or show their level of agreement to a set of statements concerning different LTC options (usually Likert scales). Binary-choice questions investigated respondent’s willingness to make use of only one type of LTC, e.g., nursing home care.

Suitability of different types of care services and settings for hypothetical patient outcomes and factors influencing such preferences: In the majority of the studies ( n  = 11), hypothetical vignettes were used that depicted individuals in need of care, while the type and severity of impairment differed between studies. Physical and cognitive impairments were mostly compared. Participants were then asked to put themselves in the position of the hypothetical person in need of care and state the appropriate LTC option. The influencing factors in most studies were then analyzed.

Preferences for the design and structure of specific LTC services: Twenty-one studies focused on a singular type of LTC to make preference-based suggestions for the improvement of specific LTC service designs. Participants were mostly asked to make trade-offs between different attributes of the depicted LTC service, e.g., the cost and care time per day of two home-based care packages. DCE and conjoint analyses were most frequently used. When reported, the number of included attributes in the experimental designs ranged from four to ten. Studies either focused on informal care, home-based, and community-based care or LTC facilities.

Impact of LTC services to value quality of life or quality of care instruments: Preference-based instruments typically incorporate a scoring algorithm that has been elicited by using various SP methods and can be used to measure caregiver’s outcomes.

Block 1.1: Preferences for different LTC options

Twenty-eight studies exclusively asked respondents for their preferred LTC option in case of a care dependency situation and investigated the impact of a variety of independent variables on the choices of respondents. The majority of these studies were conducted in China ( n  = 12) and the USA ( n  = 7). The most preferred care option by almost all (60 to 85%) participants was home care, either provided by relatives or professionals (Chung et al. 2008 ; Costa-Font et al. 2009 ; Eckert et al. 2004 ; Fernandez-Carro 2016 ; Fu et al. 2017 ; Filipovič Hrast et al. 2019 ; Hajek et al. 2017 ; Imamoğlu and Imamoğlu 2006 ; Laditka et al. 2001 ; Liu et al. 2019 ; Rong et al. 2019 ; Spangenberg et al. 2012 ; Wei and Zhang 2020 ; Zeng et al. 2019 ; Zhang et al. 2017 ; Fisher 2003 ; Kim and Choi 2008 ; Wang et al. 2004 ; Iwasaki et al. 2016 ). Some studies further differentiated between receiving care and living in one’s own home or the relative’s home, of which the option of remaining in one’s own home was preferred by all except in the study by Fernández-Carro ( 2016 ). Here living in the relative’s home was preferred by 56% of respondents compared to 21% of respondents preferring to be cared for in their own home. Pinquart and Sorenson ( 2002 ) found that older respondents preferred informal or mixed support for short-term care dependency and more formal assistance in the case of LTC needs. Seven studies investigated preferences for community-based care. On average, 5 to 10% of the respondents preferred to use community services in case of a care dependency (Chung et al. 2008 ; Liu et al. 2019 ; Wei and Zhang 2020 ; Zhang et al. 2017 ). In the remaining three studies, willingness to use community services was higher, documenting up to 38.7% (Laditka et al. 2001 ; Rong et al. 2019 ; Zeng et al. 2019 ).

The third LTC option most often investigated was institutional care, particularly, respondent’s intention or willingness to enter a nursing home when in need of care. Acceptability of institutional care varied greatly between studies. In most studies, 2 to 20% of respondents expressed their willingness to enter a care home in the future (Chung et al. 2008 ; Costa-Font et al. 2009 ; Eckert et al. 2004 ; Fernandez-Carro 2016 ; Fu et al. 2019 ; Liu et al. 2019 ; Wei and Zhang 2020 ; Zeng et al. 2019 ; Huang et al. 2018 ; Kim and Kim 2004 ; Qian et al. 2017 , 2018 ; Chou 2010 ; Wang et al. 2004 ; Iwasaki et al. 2016 ). The lowest acceptability rate was found in a Chinese survey with 14,373 participants aged 60 and above with a willingness of less than 3% to enter a nursing home (Zhang et al. 2017 ). A study by Hrast et al. (2019) (72%) in Slovenia recorded the highest acceptability rates.

Block 1.2: Factors influencing preferences for different LTC options

To better understand the LTC choices of respondents, many of the included studies investigated the influence of a variety of independent variables on such choices. Which independent variables were looked at was, however, heterogenous across studies and either chosen research-focused ( n  = 19) or with the help of Anderson’s model of health services utilization ( n  = 9). When studies applied Anderson’s model, independent variables were most often grouped into predisposing (e.g., age, sex, nationality, educational level), enabling (e.g., income, number of children, family network, social support) and need (e.g., self-rated health, cognitive function, number of chronic diseases) factors on the choices of respondents. A list of independent variables that each study investigated can be found in Table 2 .

Preferences for home care were positively associated with lower self-rated care (OR: 1.3), no need of care (OR: 5.5), and providing care for family members or friends (OR: 1.6) in a German study by Hajek et al. ( 2017 ). Expectations of reciprocity and strong family bonds might explain such preferences. In the Chinese study by Liu et al. ( 2019 ), older adults living in rural areas preferred home-based services and receiving support from family members. Eckert et al. ( 2004 ) found a higher education (OR: 1.78) and being female (OR: 1.55) increased preference for care by kin. Contrastingly, Fernandez-Carro ( 2016 ) found that factors like being widowed (Coeff: 0.09), a low educational (Coeff: 0.15), and financial profile (Coeff: 0.28), and already living at children’s home (Coeff: 0.14) significantly increased the likelihood of choosing co-residence at a relative’s home. Compared to home care, those respondents who preferred community-based care were in need of visiting a medical care team (OR: 2.12) and needed self-care information (OR: 4.39) (Chung et al. 2008 ). A study involving 169 older caregivers in the USA found a significant gender difference for being able to afford to pay for services. It found that almost 60% of male respondents and 33.9% of female respondents would rather use community services than ask family for help (Laditka et al. 2001 ).

When it comes to respondents’ willingness to use institutional care services, several studies found that poorer health status was positively associated with such willingness (Wei and Zhang 2020 ; Rong et al. 2019 ; Zhang et al. 2017 ; Jang et al. 2008 ; Kim and Kim 2004 ; Hajek et al. 2017 ). Marital status (unmarried or widowed) additionally positively influenced respondents’ willingness to enter a care home (Wei and Zhang 2020 ; Zeng et al. 2019 ; Rong et al. 2019 ; Qian et al. 2018 ; Fernandez-Carro 2016 ). Income was found to have a statistically significant impact on respondents’ choice to receive institutional care in several studies. Studies by Wei and Zhang ( 2020 ), Qian et al. ( 2018 ), and Dong et al. ( 2020 ) found that respondents with a higher income were more likely to prefer an institutional setting. However, Kim and Kim ( 2004 ) and Kim and Choi ( 2008 ) found that the opposite was true. A higher education was also found to positively influence respondents’ willingness to enter a care home (Wei and Zhang 2020 ; Qian et al. 2018 ; Fernandez-Carro 2016 ; Chou 2010 ; Dong et al. 2020 ). Fewer children or a poor relationship with one’s children increased respondents’ willingness to move to a LTC facility in the future (Kim and Kim 2004 ; Qian et al. 2018 ). Having an acquaintance already living in a nursing home (OR: 2.80) additionally increased respondents’ willingness to enter a nursing home (Jang et al. 2008 ). A Chinese study investigating age-cohort differences on the intention toward old age home placement found that middle-aged and older Chinese respondents tended to have more positive attitudes toward old age home and were willing to enter a nursing home than younger participants (Tang et al. 2009 ).

Block 2.1: Suitability of different types of care services and settings for hypothetical patient outcomes

Nieboer et al. (2010) elicited the preferences of the general Dutch elderly population ( n  = 1,082) for LTC services by means of a DCE. In each choice set, respondents had to choose the most suitable care package (A vs. B) for a specific patient. Four patient profiles were presented: physically frail elderly, elderly with dementia, and then both groups either living alone or with a partner. Irrespective of the group, the greatest value was attached to a regular care provider and the availability of transportation services. For physically frail elderly, transportation services were deemed most important ( living alone coeff: -0.572, WTP: €120; living with a partner coeff: -0.459, WTP: €76). For older patients with dementia who were living alone , the most important attribute was living in an apartment building in close proximity of the caregiver (Coeff: 0.498, WTP: €177). For patients with dementia who were living with a partner , the most important attribute was a regular care provider (Coeff: -0,493, WTP: €88). Generally, all services were deemed more important to care-dependent people living alone compared to those living with a partner. Living in a care or nursing home was the least preferred living situation, except for dementia patients living alone.

Additionally, 14 studies examined the suitability of LTC settings for different hypothetical patient outcomes. Of these studies, two applied the conjoint analysis method (Fahey et al. 2017 ; Robinson et al. 2015 ), one the time-trade off method (Guo et al. 2015 ), and the remaining 11 a vignette survey. Fahey et al. ( 2017 ) found that respondents placed the greatest weight on reducing strain on family members and wanting to stay at home with support for as long as possible. Robinson et al. ( 2015 ) found that the most important attribute of the respondents was going home with care support. Half of the respondents were additionally willing to sacrifice one year or more of their life to be able to stay at home with support. Guo et al. ( 2015 ) found that home care was strongly preferred compared to nursing home for mild to moderate physical impairments. Such preferences were found to decrease by 0.04 quality of life weight for every additional ADL impairment. With increasing severity of impairment, especially of a cognitive nature, preferences tended to shift toward nursing home care.

In the remaining studies, vignettes depicting situations with hypothetical older adults in need of care were used. In most cases, the severity of the depicted care dependency was altered in the vignettes and respondents were asked to choose an appropriate LTC option for that person. The majority of the vignette surveys were conducted in the USA and differentiated the hypothetical care dependencies into physical and cognitive impairments (Bradley et al. 2004 ; McCormick et al. 2002 ; Min 2005 ; Min and Barrio 2009 ; Wolff et al. 2008 ). In case of IADL needs or a hypothetical hip fracture, respondents preferred to make use of informal or formal home-based care services (Wolff et al. 2008 ; McCormick et al. 2002 ; Min 2005 ; Min and Barrio 2009 ; Kasper et al. 2000 , 2019 ). While McCormick et al. ( 2002 ) found similar preferences between Japanese-Americans and Caucasian-Americans in case of a hip fracture, Min and Barrio ( 2009 ) found that 83.3% of non-Latino white older adults expressed a preference to rely on formal or paid help compared to 54.6% of Mexican-Americans. In terms of cultural values, 73.3% of Mexican–American respondents agreed that care should be provided by family members and not by outsiders as compared to 32.6% of non-Latino White respondents (Min and Barrio 2009 ). In a US study by Bradley et al. ( 2004 ), in the hypothetical case of cognitive and physical impairment, African-American respondents were more likely to use informal LTC (72.3%). In the hypothetical case of dementia or stroke, preferences shifted toward nursing home care or an exclusive use of formal care services (Min 2005 ; Wolff et al. 2008 ; Werner and Segel-Karpas 2016 ; Kasper et al. 2000 ). With increasing severity of impairment, preferences tended to also shift toward nursing home care (Carvalho et al. 2020 ; Santos-Eggimann and Meylan 2017 ). Adult children were more likely to recommend moving to a retirement facility than older adults (Caro et al. 2012 ).

Block 2.2: Factors influencing preferences for LTC settings for hypothetical patient outcomes

In case of a hip fracture, age (OR: 1.07) and being female (OR: 2.24) increased the likelihood of Japanese-American respondents choosing home healthcare (McCormick et al. 2002 ). In a sample of 144 Korean-Americans, being female (OR: 0.09), having a higher education (OR: 0.76), and having stronger traditional values (OR: 0.79) significantly increased the likelihood of choosing an informal instead of formal care arrangement for a possible hip fracture (Min 2005 ). With increasing severity of incontinence, the proportion of people choosing institutional care instead of home-based care increased significantly. Personal incontinence of respondents had no significant impact on their choice of LTC option (Carvalho et al. 2020 ). In three studies, race played a significant role in explaining preferences. Being African-American (OR: 2.41) and Mexican–American (OR: 4.6) increased the likelihood of turning to an informal caregiver in case of a care dependency situation (Bradley et al. 2004 ; Min and Barrio 2009 ). African-American respondents were less positive than white respondents about nursing home staff, trust, and quality (Bradley et al. 2004 ).

In case of dementia, age (OR: 0.96), being female (OR: 1.41), and marital status (OR: 0.53) significantly affected the intention of Japanese-Americans to use nursing home care (McCormick et al. 2002 ). In case of Alzheimer’s disease, institutional care was preferred by respondents with a higher education, better cognitive status, greater number of illnesses, and not wanting to become a burden on family (Werner and Segel-Karpas 2016 ). For a hypothetical stroke, independent decision-making style (OR: 7.96) increased the likelihood of choosing a mixed care arrangement instead of informal care. An independent decision-making style (OR: 9.83), having health insurance coverage (OR: 12.72), and greater IADL limitation (OR: 3.53) increased the odds of relying on all formal care (Min 2005 ).

Block 3: Preferences for the design and structure of specific LTC services

Home-based and community-based care.

Six studies investigated people’s preferences for home-based services (package A vs. B) for care-dependent people by means of a DCE (Chester et al. 2017 , Kaambwa et al. 2015 , Kampanellou et al. 2019, Lehnert et al. 2018 , Walsh et al. 2020 , Chester et al. 2018). While Chester et al. ( 2017 ) and Kampanellou et al. (2019) asked British caregivers to people with dementia (PWD) for their appraisal, Kaambwa et al. ( 2015 ) and Chester et al. (2018) questioned care-dependent people as well as informal caregivers. Lehnert et al. ( 2018 ) and Walsh et al. ( 2020 ) surveyed a sample of the general population. Less rotation in the number of caregivers per month were valued as crucial by respondents in the DCE of Chester et al. ( 2017 ) and Lehnert et al. ( 2018 ). In the DCE by Lehnert et al., respondents were willing to pay up to 213.86€ per month for a regular caregiver. When it comes to dementia care, several studies have found specialized training and communication skills to be the most important attributes for respondents. In a second DCE by Chester et al. (2018), “support with personal feelings and concerns provided by a trained counsellor at home” (Coeff: 0.676, WTP: £31) and “information on coping with dementia provided by an experienced worker at home” (Coeff: 0.592, WTP: £27) were valued the highest. In the study by Walsh et al. ( 2020 ) “personalized communication with the person with dementia” (Coeff: 0.54, WTP: €135.45) was found to be one of the most important determinants of person-oriented home-care services for PWD. Guzman et al. (2019) investigated the type of communication skills. It found that non-verbal communication (eye contact, tone of voice, body language) had the greatest significance to the respondents. Especially implementing interventions or procedures promptly and completely (Coeff: 6.763) and listening attentively to verbalization of patients (Coeff: 4.732) was most important.

Loh and Shapiro ( 2013 ) assessed the willingness to pay for home- and community-based services (HCBS). On average, respondents were willing to pay up to $933.32 for HCBS per months. WTP varied across different HCBS programs, with the highest WTP of $1776.61 documented for Alzheimer Disease Initiative program (Loh and Shapiro 2013 ). Lehnert et al. ( 2018 ) found respondents of the German DCE were willing to pay up to €233.71 per month and up to €429.10 per month for high quality care and very high quality of care, respectively. Walsh et al. (2019) found respondents were willing to pay up to €154.18 for “20 h per week of publicly funded care hours” and up to €139.64 for “high flexibility of service provision.” Furthermore, Kampanellou et al. (2019) found that respondents ranked the attributes “respite care for you is available regularly to fit your needs” (Coeff: 1.292; WTP: £235) and “home care such as personal care and cleaning is provided regularly for as long as needed” (Coeff: 0.933; WTP: £170) to be the most important.

In the study by Kaambwa et al. ( 2015 ) the most preferred community aged care (CDC) package that was chosen across all subgroups with a probability of 0.124 was the one with multiple service providers as well as family members to provide day-to-day services. The individual (client) was responsible for managing funds. Another Chinese study by Xiang et al. (2019) found the provision of health care services the most important, of which regular health examination (mean priority: 1.51) and health counselling (mean priority: 2.46) were the most important. Culture-related activities were judged as the least important by the respondents, although it was deemed slightly more crucial by the male respondents compared to the women. Respondents’ education levels also influenced their answers. Respondents with a higher educational level placed greater importance on daily life assistance.

Long-term care facilities

Three studies examined people’s preferences for LTC facilities or nursing homes by means of a DCE (Milte et al. 2018b ; Sawamura et al. 2015 ; Song et al. 2020 ). In an Australian study by Milte et al. 2018b , residents of nursing homes as well as family members as proxies were surveyed; the study focused on food preferences. The most important attribute of respondents was the taste of the food, whereby it was judged that it is crucial for the food that is provided to have an excellent taste (Coeff: 0.558, WTP: $24 per week). In the Japanese DCE by Sawamura et al. ( 2015 ), respondents had to choose between facility A and B for two different patient profiles, one with dementia and the other one with a fracture. Respondents valued the facility where relocation was not required as the highest even when the health of the patient deteriorates ( dementia coeff: 1.67, fracture coeff: 1.36). Respondents with personal caregiving experience showed significantly greater preference for the availability of individual choice of daily schedule and meals. In the Chinese study by Song et al. ( 2020 ), older adults with the intention or willingness to live in a nursing home were asked to choose either between nursing homes A and B or neither of the options. The most important attributes for respondents were “location” and “care service”. The respondents preferred inner suburbs and regarded good care service as important.

In a large study by Roberts and Saliba ( 2019 ), assessment data of nursing homes was used to rank 16 daily care and activity services on a Likert scale from one to five. The latent class model showed that preferences could be grouped into four classes, namely “important” (38.3%), “activity” (27.1%), “care” (24.1%), and “unimportant” (10.4%). Race, ethnicity, cognition, and depression were found to be predicting values to determine the group to which the respondents were most likely to belong. African-American race and Hispanic ethnicity were predictors of membership to the first group, which ranked almost all care and activity preferences as important. Cognitive impairment and depression were predictive factors of belonging to the fourth group, in which respondents ranked more than half of daily care and activity preferences as unimportant.

In a survey study by Abbott et al. ( 2018 ), changes in preferences of 255 nursing home residents were examined over a period of three months. Sixteen of 72 preferences were rated as very or somewhat important by 90% or more of the residents. These preferences fell predominantly into the domain of self-dominion ( n  = 9) and enlisting others in care ( n  = 4). A total of 96.50% of respondents preferred having staff show respect to nursing home residents. When asked again after three months, the average agreement rate was 59% although 68 of 72 preferences had 70% or higher stability over the time period. Results reveal that residents who report high levels of importance at baseline are likely to report the same high preferences after the time period of three months. In a study by Przybyla et al. (2019), 214 senior Polish citizens were surveyed regarding their housing preferences. Willingness to move to housing options better tailored toward limited mobility was found in respondents living in larger cities. Based on the answers of the respondents, the preferred facilities at a senior housing estate included a 24 h medical care service (63%), a guarded estate (50%), having house cleaning services (48%), and a canteen (47%). A live-in caregiver was judged as important by less than 20% of respondents.

Informal care

Mentzakis et al. (2011) conducted a DCE in Scotland with 209 informal caregivers to estimate monetary valuations for various informal care tasks. Initially, respondents were asked to choose between two hypothetical informal care situations, with the opportunity to opt out in a second step and let a person of their choice take over. A three-class model was fitted and illustrated preference heterogeneity between these three groups. Monetary compensation to the caregiver was judged as more important by younger respondents than older adults. For the first class, the attribute “household tasks” was the most important, with the lower the number of hours of household tasks per week being preferred (Coeff: -0.0109). For the second and third class, “personal care” was the most important attribute, where a lower number of hours of personal care per week was preferred (Coeff: -0.0232 and -0.0704 respectively). Willingness to accept values were additionally calculated. For class 1, the only statistically significant value was for household tasks being valued £0.6 per hour. For class 2, a per hour value of £0.38 for personal care was estimated.

Several studies tried to explore the value of informal care by estimating the willingness-to-pay (WTP) for a reduction in informal caregiving time through contingent valuation method (Gervès et al. 2013 ; Gustavsson et al. 2010 ; Fu et al. 2019 ; Liu et al. 2020 ; König and Wettstein 2002 ). Three of these studies (Gustavsson et al. 2010 ; Gervès et al. 2013 ; König and Wettstein 2002 ) focused on informal care for Alzheimer’s disease or other mental disorders. Gervès et al. ( 2013 ) surveyed French informal caregivers of elderly care recipients with cognitive impairments. The authors found that negative influences on caregiver’s morale was associated with the ability of respondents to estimate a WTP value for a 1 h reduction in care time. About 45% of the respondents were, however, unable to estimate a WTP value; 19% were willing to pay ≤ €13, 23% between > €13 and ≤ €18 and 13% were willing to pay more than €18 to be replaced for one hour. Gustavsson et al. ( 2010 ) surveyed a total of 517 informal caregivers of elderly care recipients in four countries. Mean WTP was calculated for a 1 h reduction in care need per day. For the UK, Spain, Sweden, and the US, the estimated values were £105, £121, £59 and £144 per month, respectively. In a Swiss study by König and Wellstein (2002), 109 pairs of informal caregivers and PWD were interviewed. On average, informal caregivers of the sample were willing to pay 57,500 CHF (US$ 38,000) for the complete elimination of burden and around SRF 2,200 (US$ 1,500) per year for a reduction of self-rated burden from moderate to low. For a hypothetical cure, caregivers were willing to pay up to 29% of their wealth and up to 23% to prevent future worsening of the disease. In a Chinese study by Liu et al. ( 2020 ), WTP and WTA values for 1 h reduction or increase of the least preferred care tasks of 371 informal caregivers were estimated. The average WTP of the respondents for a 1 h reduction of the least-preferred care task per week was 25.31 CNY. The minimum WTA for having to provide another hour of their least-preferred care task per week was 38.66 CNY. In a study by Fu et al. ( 2019 ) the number of co-payment respondents were willing to pay for voucher schemes in Hong Kong was investigated. Older age, greater financial resources, and a positive attitude toward voucher schemes resulted in a higher WTP of respondents.

Block 4: Impact of LTC services on care-related quality of life and caregiver’s outcomes

Different instruments have been developed to measure care-related quality of life and caregiver’s outcomes to be used in economic evaluations. This provides an indirect measure of what caregivers wish for their LTC situation to look like. One of these preference-based index instruments is the Carer Experience Scale that was designed to capture the caring experience and consists of six domains, each with three levels. Al-Janabi et al. ( 2011 ) conducted a BWS experiment to estimate index values for England. For the surveyed informal caregivers, being able to do most of the activities you want outside caring (Coeff: 4.41) and getting a lot of support from family and friends (Coeff: 4.08) were selected most often as best.

The Consumer Choice Index–Six Dimension (CCI-6D) instrument was developed in Australia to assess the quality of care in nursing homes. Milte et al. ( 2018a , b ) generated a scoring algorithm for the instrument by means of a DCE with 126 residents of nursing homes and 416 family member proxies. Always having the room set up to make the resident feel “at home” was the most important for residents (Coeff: 0.616). While this was equally important to family members (Coeff: 0.623), the most important item for family members was that care staff are always able to spend time with their care-dependent family member (Coeff: 0.648). The authors recommend using the resident scoring algorithm, as they have live experience and their preferences showed greater consistency across answers (Milte et al. 2018a ).

The aim of this systematic review was to summarize and synthesize available evidence on LTC preferences of older adults in need of care. For this purpose, a wide range of studies applying SP methods to elicit preferences were systematically searched. Sixty-six international peer-reviewed studies were included and relevant results were extracted. While this review focused exclusively on quantitative SP methods, the heterogeneous results of the included studies reflect the complexity of LTC. Even when the same methodology was applied, the studies differed with regard to their research focus, study population, sample size, analysis model, and study design. Studies conducted in 19 different countries were included, with a majority of studies conducted in Asia dealt with rapidly aging populations. The overview of attributes and levels used in the choice-based elicitation techniques (DCE, BWS, CA) provide an important impression on how the studies operationalized LTC and measured related preferences, as the choice of attributes is usually substantiated by extensive literature reviews and/or qualitative interviews with the target population.

Irrespective of the heterogeneity of studies, some consistent findings emerged. When presented with a set of LTC options, the majority of study participants preferred to “age in place” and make use of home-based services or informal care by family members in case of becoming care-dependent. Particularly for short-term or mild-to-moderate care needs (e.g., hip fracture), they generally preferred informal caregiving with some professional assistance if needed. Remaining in one’s own home was linked with maintaining independence, autonomy, control, and their social contacts. With increasing care-dependency needs, a shift in the preferences of study participants across all studies could be noticed toward the exclusive use of formal LTC services or nursing home care. For dementia patients, especially, nursing home care or a regular formal care provider at home was deemed important by respondents. Nevertheless, nursing home care was associated by many with a loss of freedom, independence, and dignity but preferred by some to not impose on family members in case of a greater care-dependency. Next to the severity of care needs, a few other independent variables were shown to influence LTC preferences, while none showed consistent effects across all studies. Being female, married with children, and already living with a partner or their children increased the likelihood of preferring informal or home-based care. A higher income, higher educational level, being unmarried or widowed, poorer health status, and having provided informal care in the past increased the likelihood of choosing nursing home care in the future.

The choice-based elicitation techniques showed that for home-based services, quality of care and less rotation in the number of caregivers per month were deemed to be crucial. In the selection of attributes, home-based packages tailored to informal caregivers to PWD placed a larger focus on the availability of respite and relaxation opportunities as well as sufficient support and coping strategies to deal with the disease. Specialized training and communication skills as well as support with personal feelings were very important to informal caregivers. For the design of LTC facilities, location, care services, individual choice of daily schedule, and excellent taste of served food were found to be the most important attributes for respondents. Even when focusing on one LTC service, attributes and levels differed greatly between studies. This aspect makes comparability difficult, however is attributable to the fact that country-specific conditions have been integrated into the particular survey designs. Nevertheless, the cost of services in terms of a co-payment played an important role and was integrated as an attribute in each of the 12 DCE studies.

Additionally, several contingent valuation studies assessed the value of informal care by estimating the WTP for a reduction in informal caregiving time. A dependency of such a WTP value on the financial status of the caregiver can be assumed and has been shown across studies. However, the influence of the care recipient's status (e.g., his or her health status), cultural and social backgrounds or country-specific care situations, have not yet been investigated and compared sufficiently. Nevertheless, studies also show that it may be difficult for respondents to provide a direct WTP or WTA value. Thus, indirect forms of questioning (e.g., DCE) may be an appropriate alternative, as shown in the study by Mentzakis et al. (2011).

Among all the choice-based elicitation techniques, DCE was mostly applied, enabling not only a ranking of the importance of attributes but also an assessment of which trade-offs respondents were willing to make for certain attributes. The use of conjoint analysis, AHP, DCE, and BWS to elicit LTC preferences is a relatively recent development as the vast majority of these studies have been published between 2015 and 2020. A major concern in the design and implementation of a DCE or conjoint analysis design is its complexity, comprehensibility, and feasibility. The fact that in more than 50% of these studies, older adults in need of care or older hospital patients were surveyed, sometimes in addition to informal caregivers, shows that these types of stated preference methods are not only suitable for targeting the general population. Preference elicitation techniques in the field of older adult care have largely been cross-sectional, measuring preferences at a single point in time. Thus, little is known about the changes in preferences across time and generations. The two studies in this review examining changes in preferences have done so in a period of three months or one year. Although extremely resource-intensive, further longitudinal studies could help understand changes in preferences.

Other reviews have tried to synthesize evidence on LTC preferences of dementia patients (Lepper et al. 2020 ), institutionalization factors for entering a nursing home for older adults (Luppa et al. 2010 ) or instruments for measuring outcomes within aged care (Bulamu et al. 2015 ). Such reviews underline the purpose of trying to reduce the complexity within the field of LTC by attempting to systematically reveal and condense the heterogeneity of results and studies. This systematic review builds upon the recent scoping review by Lehnert et al. ( 2019 ) by additionally capturing the period from February 2016 to October 2020 and including preferences for nursing home as well as dementia care. We included a total of 34 additional studies from 2016 to October 2020. The inclusion of these recent studies showcase the very dynamic research interest in LTC preferences. Additionally, two-thirds of the included DCE and conjoint analyses were conducted in this period. Such elicitation techniques have considerably increased in the last few years as a way to quantify preferences (Soekhai et al. 2019 ).

Implications for research and policy

In the design of LTC systems, the demand for preference data has increased over the last few years as a way to integrate people’s priorities, needs and expectations. National governments need to establish sustainable and affordable LTC systems to evolve with the on-going demographic developments. The heterogeneous methods and LTC operationalizations used in the included studies mirror the national LTC systems and their confrontation with LTC in general. Thus, comparing preferences across countries is onerous. National preference data should be consulted especially for improving policies and LTC structures. Against the background of changing social developments, studies are needed that investigate LTC preferences and needs from the perspective of care-dependent older adults as well as (potential) informal caregivers. Further research is needed on people’s willingness to care as well as their realistic capabilities to ease the immense physical and psychological strain most informal caregivers experience. As informal caregiving is still considered as an essential pillar of most LTC systems, willingness to care as an indicator of the informal care potential of each country is vital. Nevertheless, to avoid caregivers becoming the next generation of care-dependent people due to immense burden, LTC services should ideally be available to supplement informal care right from the beginning. Therefore, preference-based data on how LTC services such as home-based or nursing home care should look like is needed.

Irrespective of the heterogeneity of the included studies, the majority of study participants preferred to “age in place” and make use of home-based services or informal care by family members in case of becoming care-dependent. With increasing severity of functional and especially cognitive impairment, preferences shifted toward an exclusive use of formal care services. Several influencing factors were investigated and reported that might explain such preferences; however, none showed consistent effects across all studies. The inclusion of preference data in the design of LTC systems can constitute an important part in finding sustainable and affordable LTC solutions that specifically support caregivers and mirror the needs and wishes of people in need of care. As shown by the rapid rise in published studies in recent years, the research interest in LTC preferences is consistently increasing. Future research should additionally investigate the changes in preferences across time and generations as well as research people’s willingness to care and their realistic capability to care next to other responsibilities such as occupation and children in the household.

Data availability

The data generated during the current study are all presented in the publication.

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de Jong, L., Zeidler, J. & Damm, K. A systematic review to identify the use of stated preference research in the field of older adult care. Eur J Ageing 19 , 1005–1056 (2022). https://doi.org/10.1007/s10433-022-00738-7

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Barbara d’amen.

Centre for Socio-Economic Research on Aging, IRCCS INRCA - National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124 Ancona, Italy

Marco Socci

Sara santini, associated data.

The data are available in the articles included in the review.

The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones.

Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified.

Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research.

Conclusions

Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

Family caregivers, or informal or unpaid caregivers, provide 80% of long-term care in Europe, representing the bulk of health and social care to older or disabled people [ 1 ]. About 17% of the population in Europe [ 2 ] and 18.2% in the U.S. [ 3 ] is responsible for providing long-term care to older and disabled relatives.

Recent demographic and epidemiological changes, e.g. the extension of life expectancy and the increasing share of older people with multiple chronic diseases, might determine the growth of health and social care demand, thus increasing the number of family caregivers needed [ 2 ]. In the family context, the provision of care can be considered as a continuum starting with caring about i.e. with low levels of care responsibility, moving on to taking care, i.e. increasing care responsibility, up to providing intense and regular assistance. According to the literature, family caregivers are classified as “primary caregivers”, i.e. persons who provide the majority of caregiving tasks [ 4 – 7 ]; “secondary caregivers”, i.e. carers who assist primary caregiver in making decisions and complete his/her hands-on care [ 8 ]; “tertiary caregivers”, i.e. carers providing periodical and additional support to primary caregiver and do not make decisions on the cared recipient but help with issues do not directly concerning healthcare e.g. grocery and homework [ 9 ]. Finally, “auxiliary caregivers” provide an extra-support to primary caregivers for bettering the assistance: they provide companionship to the care recipients (e.g. grandparents), try to meet their emotional needs and participate in social activities with them [ 10 ].

As regards the tasks, the family caregivers perform, on a voluntary basis, a wide range of activities requiring different levels of effort, from company to help in carrying out the activities of daily living (ADLs) up to psychological and emotional support. The effects of care on different life realms of caregivers have been largely documented by the literature, such as anxiety and depression [ 11 ], relational strains [ 12 ], social isolation that may lead to perceived stress and loneliness [ 13 ]. Moreover, providing care and exposure to the suffering of a loved one can increase the risk for psychological and physical morbidity [ 14 ].

Despite the increasing number of male caregivers [ 15 ] the primary family caregiver is typically an adult and almost always a middle-aged woman [ 16 , 17 ]. Nevertheless, in developed countries several changes in the labour market and in family settings, e.g. increasing number of employed women, lack of strong family networks, living in single parent families [ 18 ] can turn young people into family caregivers. Sometimes, young family caregivers help adult relatives, i.e. their parents, and provide assistance to a frail or disabled family member, e.g. grandparent or sibling [ 19 ] thereby playing the role of auxiliary caregivers [ 20 , 21 ]. However, parents might need care themselves because of mental illness and/or physical disability and, in this case, young children have to take on the role of primary caregiver [ 19 , 22 , 23 ].

The definition of young caregiver differs across countries, according to the level of awareness of the civil society and of research carried out on the topic [ 24 ]. In the literature, there are different interpretations concerning the age brackets identifying a caregiver as young. In fact, there are more [ 25 – 27 ] and less extensive interpretations of the age range identifying both young caregivers [ 28 , 29 ] and young adult caregivers [ 19 , 25 ]. This heterogeneity could make it difficult to compare findings from different studies, as deepened in the Methods section.

A second difficulty is the low level of self-awareness; many youngsters, indeed, do not recognize themselves as family caregivers [ 30 , 31 ]. This can happen because their culture of affiliation takes it for granted that they have to cover this role in the family, or because caring is considered as an extension of family relations [ 32 ]. Poor self-awareness may lead to a third problem: identification, which could entail resultant difficulties for recruitment and enrollment of young caregivers in research and support programs [ 18 ].

Even though there is still a dearth of quantitative cross-national studies on young family caregivers, several statistics and surveys at national level provided important information for grasping the dimension of the phenomenon, though taking into account different age ranges and, moreover, not allowing a full comparability of findings. For example, in the U.S. one fifth of caregivers was aged between 18 and 34 [ 3 ], in Canada over 1 million youth between the ages of 15–24 years (28.2% of the whole population in that age range) provided some kind of unpaid child and elder care [ 33 ], while in Australia one in twenty people (5.6% or 151,600 persons) aged 15–24 years were young caregivers [ 34 ].

Concerning Europe, in the last decade a growing attention has been paid to young caregivers, particularly in the UK, where, in 2011, there were 178,000 unpaid young caregivers (5 to 17 years-old), i.e. 19% more than in 2001 [ 35 ]. A recent cross-national survey [ 36 ] carried out in six European countries (Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK) showed that out of 9,298 respondents, 28% were adolescent young caregivers (aged 15–17). A further exploration of the same database showed that 16.9% of adolescent caregivers aged 15–17 were caregivers of grandparents [ 37 ], suggesting the need for proofing the experience of young and adolescent caregivers of older relatives. Regardless of the age of the care recipient, when in the household a situation of disability and/or a chronic health condition occurs, young people may increase their level of involvement in carrying out basic domestic chores such as cleaning and tidying and they can start to help family members in need of care perform the activities of daily living e.g. dressing, eating, washing, up to provide support through medical care [ 38 , 39 ]. When the person in need of care is old, young people are pushed to provide care by the unavailability or unwillingness of the adult family members. Thus, young people provide care for contributing to the family ecosystem and/or in response to a request of parents, especially when the latter are working caregivers [ 40 ].

Young caregivers of older care recipients perform a wide range of caring activities: personal hygiene and meal preparation [ 40 , 41 ], help for instrumental activities of daily living, companionship and emotional support [ 42 ].

If, as highlighted above, the care activity can have a negative impact on the physical and mental health of adult family caregivers, this can happen all the more to young people and adolescents who, being still in a developmental age, can present psychological and emotional fragility [ 41 ]. According to the literature, young caregivers identify significant worries and problems in relation to their well-being, and these come over and above any ‘normal’ adolescent difficulties [ 43 ]. In particular, they report bad physical health [ 44 ], high levels of stress [ 45 ], fear and nervousness [ 46 ]. Moreover, they can run the risk of depression [ 47 ] and mental illness [ 48 ] and experience health inequalities, social, educational and employment exclusion [ 28 , 49 , 50 ]. These findings are enriched by studies that compared young adult caregivers with their non-caregivers peers, in which caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers [ 51 ]. Following this comparative approach between young adult caregivers and non-caregiving peers, one study stated that young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health [ 52 ]. Furthermore, young caregivers reported less reliance on problem-solving coping, higher somatization and lower life satisfaction if compared with non-caregivers [ 53 ]. Nevertheless, several studies pointed out even possible positive effects of caregiving on adolescent and young people, e.g. learning coping skills for the future, feelings of gratification, a closer relationship with the cared for person [ 42 ] and a greater empathy [ 29 ]. A recent study comparing the impact of caregiving among adolescent young caregivers of grandparents to adolescent caregivers of other care recipients (i.e. other relatives and friends) [ 37 ] showed that the quality of the relationship between the young caregiver and his/her grandparent can mitigate the negative impact of caregiving, e.g. frustration, sense of inadequacy and mental health problems. Despite the increasing number of young people providing assistance to their relatives across the world, the aforementioned studies representing an exception, young family caregivers are not sufficiently considered by the literature, especially those caring for older family members with functional disability, in most cases grandparents [ 21 , 37 ].

Objectives and conceptual framework

The main goal of this systematic literature review is to cover this gap in knowledge by exploring how scientific literature treats the topic of young and young adult caregivers of older relatives, from a methodological as well as a content-based perspective. Hence, a methodological appraisal was carried out and the findings of selected articles were then analyzed, in order to reply to the main research questions, as suggested by Petticrew et al. [ 54 ]:

• What are the methodological characteristics of the articles included in this review?
• What are the main findings that emerge from these studies?
• In particular, what are the experiences, motivations, and caregiving impact of two groups of young caregivers of older relatives: children (or caregiving youth) under age 18 and young adult caregivers?
• What are challenges and open questions that arise from the selected articles and that could suggest future research and policy directions?

The findings related to the last three research questions are framed in a specific conceptual framework, in particular the caregiving stress appraisal model (renamed CSA model) proposed by Yates et al. [ 55 ]. This model draws upon both the stress model presented by Pearlin et al. [ 56 ] and the appraisal model presented by Lawton et al. [ 57 , 58 ]. Given that the CSA model [ 55 ] is focused on caregivers of all ages, not specifically on young caregivers, it allows us to compare the caregiving experience lived by young (adult) caregivers described in the articles selected by this systematic literature review to the caregiving experienced by caregivers of other ages.

The conceptual framework

The CSA model [ 55 ] explores the relationships between caregiving stressors and caregiver well-being, measured in terms of risk of depression, in a representative community sample of disabled elders and their adult informal caregivers. This conceptual framework, as previously written, is based on the strengths of two different models: the stress model presented by Pearlin et al. [ 56 ] and the appraisal model elaborated by Lawton et al. [ 57 , 58 ]. The model proposed by Pearlin [ 56 ] treats stress as stemming from the way caregivers’ lives become organized and the effects of this organization on their self-judgments. According to this approach, stress is a consequence of a process including the socioeconomic characteristics and resources of caregivers and the primary and secondary stressors to which they are exposed.

In particular, primary stressors are hardships and problems anchored directly in caregiving, while secondary stressors are related to two categories: the strains experienced in roles and activities outside of caregiving, and intrapsychic strains, involving the diminishment of self-concepts. Coping behaviors and social support can potentially intervene as mediating factors at multiple points along the stress process. Lawton et al. [ 57 , 58 ] proposed a conceptual model that adds to the Pearlin findings the importance of the individual appraisal and reappraisal process. According to this, the appraisal of a caregiving stressor is a subjective process accounting for the social, cultural, and economic characteristics of the caregiver.

Furthermore the caregiving is a dynamic process that involves caregivers, care recipients and other psychological and relational aspects. Starting from the strengths of these two models [ 56 – 58 ], the CSA conceptual framework [ 55 ] links caregiving stressor, caregiving appraisal and potential mediators to caregiver well-being. In particular, this model is composed of five interrelated factors: 1) the variables of care recipient needs for care or “primary stressor” (i.e. cognitive impairments, functional disability and problems behaviours); 2) caregiver’s primary appraisal (i.e. hours of informal care, that is the response to the care recipient’s health conditions). This process includes both subjective elements (e.g. appraisal of the care recipient’s needs of care) as well as objective ones (e. g. measure of caregiving work); 3) mediators that could change the effects of the stressor on the caregiver’s well-being. These are classified as external (e.g. use of formal services) and internal (e.g. levels of global mastery, quality of the relationship between the caregiver and care recipient, and emotional support available to the caregiver). According to Lawton et al. [ 57 ], “mastery” could be defined as a positive view of one’s abilities and the related behavior during the caregiving process; 4) the caregiver’s secondary appraisal (i.e. the caregiver’s perception of being “overloaded”, that is the caregivers’ capability of determining their own feelings about caring); 5) outcomes, i.e. psychological caregiver’s well-being, measured by risk of depression.

According to this model, caregiving is a complex process in which two separate caregiver’s appraisals affect the relationship between the stressors and the outcomes. Hence, the outcomes of the caregiving experience are a subjective process, strictly related to the psychological, social, cultural, and economic characteristics of the subject. Furthermore, CSA model [ 55 ] highlights the association between the caregiver’s overload and consequent depression, and the poor quality of the relationship with the older care recipient, especially in case of cognitive and behavioural problems.

According to this conceptual framework, that is based on the experiences of caregivers of all ages, the authors discuss the findings of this systematic literature review in order to highlight differences related to the caregiving experience of young (adult) caregivers.

In order to answer the above mentioned research questions, the authors first carried out a methodological appraisal using the Mixed Methods Appraisal Tool (MMAT) [ 59 ], and then the contents of each selected article were analyzed thematically. As regards the methodological appraisal, MMAT is designed for the appraisal stage of systematic mixed studies reviews, i.e., reviews that include qualitative, quantitative and mixed methods studies, with the exclusion of non-empirical papers, such as review and theoretical papers. The MMAT includes criteria for appraising the methodological quality of five categories of studies: (a) qualitative studies, (b) randomized controlled trials, (c) non-randomized studies, (d) quantitative descriptive studies, and (e) mixed methods studies. For each study category, MMAT provides two groups of questions: 1) two screening questions aimed at exclude that the paper is not an empirical study and thus cannot be appraised using the MMAT; 2) five questions targeted to evaluate the methodological distinctive specific characteristics of the appraised study.

Each criterion is rated on a categorical scale: yes, no, and can’t tell. A quantitative appraisal score was calculated by applying the scoring system proposed by Pluye and colleagues [ 60 ]. According to them, the presence/absence of criteria (yes/no) may be scored 1 and 0, respectively. Thereafter, a ‘quality score’ can be calculated as a percentage: [(number of ‘yes’ responses divided by the number of ‘appropriate criteria’) × 100] [ 60 ].

In this systematic review, first and second authors independently appraised the methodological quality of each study; the results of each appraisal were compared and any disagreements were solved through intervention of the third author and discussion among the authors.

Finally, after calculating the above mentioned appraisal score for each article, we synthesize methodological quality results in three different categories:

• Low score= < 35%
• Medium score= from 36 to 70%
• High score= from 71 to 100%

As regards the content analysis, in order to examine characteristics, conditions and needs of young caregivers of older relatives, the content of each article was analyzed adopting the constant comparison technique [ 61 ]. According to the latter, each study was read by each researcher independently and the contents are codified in order to highlight concepts that were raised from the study. Then, these codes were constantly compared with the findings of the other selected studies to the purpose of identifying common themes and conceptual categories. At the end of this analytical stage, the researchers compared the outcomes of their independent research in order to identify commonalities and to discuss any disagreement. The categories emerged from the studies were grouped according to their similarities into overarching themes, as shown in the section Results.

Search strategies

PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were accessed by the first author (B. D’Amen) on January 27, 2019, for the sake of conducting a comprehensive search using a combination of Boolean operators and terms related with the topic. Given that the focus of this review is the relationship between young and young adult caregivers and older care recipients, two different groups of terms were selected for the identification of the articles. A pilot search was conducted in the selected databases, after which some minor changes were made to correct search words. In particular, for the caregiver category we used the terms: young caregivers , young carers , young adult caregivers , young adult carers . Considering the care recipient category, we used the following terms: older family members , older people , older adults and elderly .

These two groups of terms were combined in search strings constructed using the Boolean operator “AND”. Following this search strategy, a total of 3,947 articles were identified through database searching, 26 additional articles were added through bibliographic research and researchers’ knowledge. From the 3,973 articles, 1,481 duplicates were identified manually and then removed. Four different eligibility criteria were applied for the selection of the articles. The first one was the age range of young and young adult caregivers. As Joseph et al. [ 38 ] stated, there is no single definition of both young and young adult caregiver. In particular, as already mentioned in the Introduction, the analysis of the literature on young and young adult caregivers reveals that there is quite a bit of variation in the definition of the age range of these categories of individuals. For example, Aldridge et al. [ 28 ] defined young caregivers as children, adolescents and teenagers under 18 years, while Beach [ 29 ] defined them as young people aged 14 to 18 years. Later, Fruhauf et al. [ 26 ] defined people aged 7 to 29 as young caregivers. The same happened for the definition of young adults. Dellmann-Jenkins et al. [ 25 ] have defined subjects aged 18 to 40 years as young adult caregivers, whilst Becker et al. [ 19 ] included in this category those aged 16 to 24.

Given these differences concerning the age brackets, the authors selected a wide age range, up to 40 years, in order to be as much inclusive as possible. Another eligibility criterion regarded the age of care recipients, set at 60 years onwards. Although there are commonly used definitions of old age (i.e. 65 years old), there is no general agreement on the age at which a person becomes old. Given this lack of a standard numerical criterion, in this literature review we adopted the cutoff point of 60 years to refer to the older population, according to the United Nations [ 62 ]. Moreover, the selected articles had to be focused on real life cases of caregiving, which means that, accordingly, studies merely focused on perceptions or beliefs about caregiving were excluded. Finally, this systematic literature review included articles written in English. These eligibility criteria were applied for the screening of the 2,492 studies. Thereafter, 2,192 articles were excluded through the analysis of both title and abstract and 300 full articles were assessed for eligibility. At the end of this selection process, the total number of articles included in the analysis was 10 (Fig.  1 ).

The PRISMA flow chart for reporting the study screening process

The three authors carried out the selection process independently: the first author reviewed 2,101 articles, the second author 250 and the third author 141 articles. The results of this selection process were checked by the authors independently. In particular, the screening process carried out by an author, say the first, was checked by one of the other two in order to verify the accuracy of the selection process described in the PRISMA chart [ 63 ]. Applying the eligibility criteria, each author ended up with the same results obtained by the colleagues.

This review includes 10 studies and their main methodological and content characteristics are described in the following section.

Study characteristics

Concerning the selected studies, six are qualitative, one quantitative and three follow mixed methods. Moreover, three studies adopt a comparative approach. In particular, Dellmann-Jenkins et al. [ 25 ] compared adult children and grandchildren as family caregivers; Dellmann-Jenkins et al. [ 40 ] explored differences between young adults who were primary caregivers to impaired older relatives and young adults who had yet to take on caregiver roles; Fruhauf et al. [ 26 ] analysed caregivers according to age.

Table  1 provides an overview of the main characteristics of the studies: data were extracted from each study by the three authors and the results were collected and classified by the first author.

Description of 10 Studies of Young and young adult caregivers of older people

a Age, sex, education, nationality-ethnicity, relationship to care recipient

b Age, sex, pathology

The selected studies cover a time ranging from the late nineties to 2013. The sample size ranges from a minimum of six to a maximum of 80 subjects; three articles included in the sample even young caregivers’ parents [ 27 , 41 , 42 ], whilst the others were focused only on young caregivers. Concerning the characteristics of caregivers, the articles provide evidences on 255 young individuals, 190 females and 65 males. The age ranges from 7 to 40 years. The selected articles considered different types of caregiving, categorized on the basis of the amount of assistance provided and the related burden. Three studies [ 25 , 40 , 64 ] were focused on primary caregivers [ 4 , 6 ], four [ 27 , 41 , 42 , 65 ] on auxiliary ones [ 9 ], and three articles [ 5 , 26 , 29 ] included different types of caregivers, with a prevalence of auxiliary ones. Out of a total of 255 caregivers included in the selected studies, 53% were primary caregivers, 15% secondary [ 8 ], 3% tertiary and 29% auxiliary [ 26 ].

On the other side, the number of care recipients was not always specified, so it is not possible to quantify the cases of multi-caregiving. The age of the cared-for older people ranges from 60 to 96 years and the sex was specified only in three articles [ 27 , 65 ], whilst in the other studies this was not reported, or can be partly deduced from the relationship between caregiver and care recipient. Concerning the type of pathology/health issues, two articles [ 5 , 25 ] did not provide information, whilst two more [ 29 , 41 ] were focused on care recipients with Alzheimer’s disease or dementia. The remaining studies concerned cared-for older people having various pathologies, cognitive or physical limitations.

Methodological and quality appraisal

As previously written, the methodological appraisal was carried out through the MMAT, the critical appraisal tool developed by Hong and colleagues [ 59 ].

According to the appraisal process described in the section methods, the results related to the methodological quality of the selected articles are summarized in the table below (Table  2 ).

Results of the methodological appraisal

a Quantitative score: [(Total/Number appropriate criteria) ×100] [ 60 ]

Considering the score system, almost all selected articles had a high methodological quality, except for a qualitative study [ 65 ] that got a medium score. The main critical aspect of quantitative and mixed method studies concerned the sample size, considered too small to be representative of the target population. The limited number of individuals involved in these studies was justified by the authors of the articles with the difficulty of reaching young caregivers, due to the lack of awareness and knowledge around this issue. In their opinion, therefore, the small sample size should be considered as a limitation concerning the target population rather than a weakness of the research studies design in itself.

As regards the qualitative studies, the structure of the interviews was not always explained, and in the medium score article the description of the coding and analytical process was not so accurate, so it was not possible to understand the bias that could come from researcher beliefs.

Content and findings analysis

The review highlighted four major themes: aspects of the caregiving relationship, effects of caring, coping strategies and recommendations for services, policy and research. Each theme has been organized in sub-themes that are dealth with in depth hereunder.

Aspects of the caregiving relationship

Motivations.

The motivations pushing a young person to take on the care of an older relative are multiple and often interconnected, e.g. affection and bond with the older person [ 5 , 25 ] and the will to avoid his/her institutionalization (e.g. in nursing homes) [ 25 , 40 ]. In some cases, contextual/familiar conditions, including the lack of availability of assistance from more adult relatives [ 25 , 40 ] or being childless [ 25 , 40 ], can be drivers of youth caregiving. Considering the CSA model [ 55 ] adopted as conceptual framework of this review, these findings confirm the relevance of the personal motivations and of the subjective appraisal in the caregiving relationship also for the youngest. However, given that these motivations could be often multiple, in the case of young caregivers it is important to adopt a wider definition of the first and the second factors, that in the above mentioned model are related to the “variables of care recipients’ needs (or primary stressor)” and to the “primary appraisal”, by considering the role of external factors, such as the contextual/familiar conditions, that in some cases might have a role in the caregiving relationship and its effects for the youngest. Usually, the quality of the relationship with parents is not an aspect influencing the willingness to provide care, but young people often help simply because there is a practical need for assistance [ 41 ]. However, in the case of primary caregivers, there are differences related to their roles: grandchildren seem to be driven more by feelings of attachment, while children have feelings of filial obligation towards the cared-for person [ 25 ].

Perceptions and meaning

Caregiving is perceived as an experience for returning the care that older people had provided in the past to the youngsters [ 5 ]. In the case of auxiliary caregivers, those most involved in caring tasks were individuals with higher levels of cohesion and lower levels of conflict in intergenerational relationships, coupled with a positive history of interactions with their grandparents [ 65 ]. These findings suggest us to deepen the CSA model [ 55 ], by considering the quality of the relationship not only as “mediators” of the caregiving relationship, that might mitigate the impact of the stress, but also as a “driver” that contributes to foster the caregiving relationship between young or young adult caregivers and older patients.

Caregiving has also been defined as a case of role reversal, in which young caregivers find themselves caring instead of receiving care [ 5 ]. As for the perception of the subjects involved in the caregiving relationship, one study [ 27 ] highlighted how grandchildren recognize themselves as auxiliary caregivers, while mothers are perceived as engaged in more caregiving activities than fathers. The care recipients are accepted and understood by young caregivers because of their illness, though these perceptions are mediated by the information given by parents. Accordingly with the CSA model [ 55 ], in particular with the process of appraisal, these findings confirm the relevance of the subjective perceptions of the caregiving role experienced by the youngest as factors involved in determining the sense of the overall caregiving relationship. Thus, the latter is not a simple response to specific care needs, but includes subjective meanings that could play a significant role in providing care and in determining its effects.

Experience of caregiving and activities performed

The analysis of selected articles showed that young caregivers carry out a wide range of activities, ranging from helping the cared-for older people in performing ADLs [ 41 , 65 ] and instrumental activities of daily living (IADLs) [ 41 ], to companionship, assistance for shopping, personal hygiene, meal preparation [ 40 ] and emotional support [ 65 ]. Sometimes caregiving activities are based on parental directives [ 26 , 27 ], although in some other cases the youngest take the initiative to carry out certain activities that can be particularly appreciated by the care recipient, such as shaving of the legs [ 26 , 27 ]. Even though the variety of caregiving tasks is dependent on both grandchildren’s developmental/emotional condition and care recipients’ caring needs [ 27 ], young people provide more care when they are more attached to grandparents and when their parents experience a greater care burden [ 41 ].

Effects of caregiving

Negative effects.

The effects of caregiving are analyzed from the perspective of the current conditions experienced by young caregivers and in some cases, too, from the perspective of the implications for future life [ 5 , 40 – 42 ]. With regard to negative aspects stemming from the caregiving relationship, compared to the contingent living conditions, young people report feelings of anxiety, depression [ 26 ], anger and/or resentment [ 27 ], sadness mingled with compassion [ 27 ], and a sense of guilt, deriving from the fact that one often wanted to do something else [ 26 ].

Many young caregivers declare that they feel fear, a feeling often resulting from health conditions of the care recipient [ 5 , 25 , 27 , 64 ] and the feeling that these may worsen. These feelings can be accompanied by frustration, generated in young people by tasks that go beyond their skills [ 26 ]. Youngsters usually state that, although they know the technical terms related to the disease of the care recipient, they find it difficult to understand them [ 27 ]. Moreover, they do not understand what they must do in a dangerous situation [ 26 ] and they complained of a lack of information on the care recipient’s health condition [ 27 ]. Furthermore, young caregivers do not know the level of knowledge and skills required to provide care properly [ 41 ]. Accordingly with the CSA model [ 55 ], these findings confirm the relevance of the “primary appraisal”, focused on the care recipient’s health conditions, and the sense of “mastery”, considered as internal resources and “mediator” of the caregiving effects, in determining negative outcomes of the caregiving relationship. Frustration can be often caused by a decrease in free time to dedicate both to themselves [ 40 ] and to other relationships [ 5 , 25 , 42 ], including those with their own peers [ 42 ] and with other family members [ 25 ], which could make it difficult to establish intimate relationships [ 25 , 64 ]. Concerning young adult working caregivers, even the effects of caregiving in the professional sphere are manifested in feelings of frustration, whose origin is the lower possibility of career advancement, mobility [ 5 , 25 , 40 , 64 ], and greater absenteeism from work [ 25 , 40 ].

The negative effects of caregiving also affect self-image, with the perception of being different from other friends and relatives [ 5 ], and the feeling of experiencing a premature role reversal [ 5 , 64 ]. In addition, caregiving involves a greater difficulty in differentiating from the family of origin [ 64 ], an important issue for the construction of individual autonomy whose negative impact on the subsequent marital quality and career choices has been documented [ 66 , 67 ]. Caregiving has also particularly negative effects on the future life of young caregivers, leading them to develop negative views and feelings about ageing [ 42 ]. Particularly important is the role of fathers, in the construction of a sense of social responsibility: when the father provides care, young caregivers might develop less social responsibility and a more negative attitude towards assistance [ 41 ].

Positive effects

As for the positive aspects associated with care, young caregivers experience an improvement in their self-image, with a greater awareness of their abilities [ 5 , 25 , 26 , 40 , 64 , 65 ], feelings of gratification and satisfaction [ 42 , 65 ], and the acquisition of new skills [ 26 , 42 ]. Particularly positive effects on the relational context in which young caregivers experience benefits have been observed not only in the relationship with older people but also with other individuals [ 5 , 25 , 29 , 40 , 42 , 64 ]. Moreover, one study [ 29 ] underlines that providing assistance can have a positive impact on family relationships, especially with siblings, and greater intimacy within the mother/adolescent relationship [ 40 ].

The caregiving relationship can be at the origin of new relational possibilities: some young caregivers, in fact, to cope with the lack of time and not to deprive themselves of meaningful relationships, include friends in their daily care tasks/routines [ 5 , 26 ]. In these cases, caregiving is transformed from a factor of social isolation to an opportunity for integration by sharing personal life challenges with peers. Particularly positive effects concern the improvement of some behavioural characteristics, since caregiving can make young people wiser and patient [ 5 ]. Providing assistance can positively predispose them to provide care in the future as well, to their partner or children [ 5 , 41 ], and give them a more positive representation of long-term care for older parents [ 41 ] and greater sensitivity to ageing issues [ 5 ]. These findings suggest that positive effects of caregiving could be related to an active role of the youngest in managing the outcomes of the caregiving process, so the sense of “mastery” stated by the CSA model [ 55 ] is confirmed as an important mediator in reducing distress and in fostering the caregivers’ well-being.

Coping strategies

To mitigate the negative effects of caregiving, young caregivers could develop different strategies: the use of positive memories with care recipients [ 26 , 42 ], the minimization of their health conditions [ 26 ], positive self-evaluation of one’s role as caregiver, and humour [ 42 ]. The stress from the caregiving relationship is also managed through the adoption of particular habits, such as, for example, sports and religious activities [ 5 , 26 , 42 ], and by receiving support from friends [ 5 ].

Use of services and needs for support

Most young caregivers receive informal support from family, friends, neighbors and the church. Formal support is less frequent and concerns health services and participation in mutual help groups. Particular barriers for the use of formal services are represented by the lack of both economic resources and information regarding available services [ 25 ].

Concerning the needs expressed by young caregivers, the possibility of receiving emotional support from other caregivers of the same age, low-cost health services for older people, and their transport to facilitate daily activities [ 25 , 40 ], are particularly relevant. In particular, according to the CSA model [ 55 ], these findings confirm the relevance of emotional support as a mediator factor able to reduce the negative outcomes of the caregiving relationship. Only one among the selected papers [ 26 ] compared young grandchildren (aged 7–17) and adult children (aged 21–29) by focusing on caregiving outcomes and caregivers’ needs. This study suggests that younger grandchildren experienced more frustration, anger, guilt, anxiety while developing more behavioral (i.e. avoidance, outside activities) and cognitive coping strategies (i.e. focusing on positive memories, denial, humor) than adult grandchildren. Moreover, the different developmental stage that young and adult grandchildren were living influenced their need, e.g. young grandchildren needed help for understanding what the care recipient’s health condition may entail and adult grandchildren needed more intimacy, as they were in a phase of life in which it is important to build up intimate romantic relationships.

Recommendations for services, policy and research

The analysis of the selected articles highlighted implications for research and support services, in particular specific service delivery recommendations. Concerning formal services, it would be desirable to promote the creation of caregiver support groups for the whole family [ 26 ]; this support should be established within the educational system and facilitated by school counsellors [ 42 ] or offered through existing ageing social service providers [ 27 ]. To facilitate the use of services, it would be useful to carry out a need assessment, in order to propose targeted and effective interventions, and to promote a greater knowledge of any support groups present on the territory, especially if they are free [ 25 ].

These actions should help the management of different types of stressful factors, including: lack of time to develop relationships, difficulties in managing married life, managing both early career difficulties and psychological discomforts arising from premature role reversal [ 25 ]. Caregiver support groups and training workshops specifically designed for multigenerational caregiving families are needed. The latter, for example, would assist parents in explaining grandparents’ physical/cognitive decline to their children [ 27 ]. Although young caregivers need to be recognized, identified and supported as a distinct group of vulnerable children [ 26 ], information on the impact of caregiving should also be disseminated in the clergy, which appears to be a particularly significant source of spiritual support [ 25 ]. Furthermore, workplaces should also have specific counsellor services and flexible work opportunities to support young caregivers in building their professional lives and to better reconcile work and care responsibilities [ 25 ].

The studies included in this review analysed the experience of young and young adult family caregivers of older relatives, who represent an under-investigated category of family caregivers [ 21 ].

The mainly qualitative approach and research designs of the reviewed studies focused on small collectives give evidence of the scholars’ need for drawing the young family caregivers’ profile and the caregiving dynamics they experience. Given the different role of caregivers included in the selected studies (i.e. primary, secondary, auxiliary and tertiary), this literature review allows us to capture the experience of young and young adults caregivers of older people from different perspectives. Moreover, the reviewed studies have explored the practical aspects of the caregiving relationship (tasks performed, motivations, meaning, coping strategies), and the amount of care provided, thereby confirming the classification of young and young adult caregivers into primary [ 19 , 22 , 23 ] and secondary/auxiliary [ 20 , 21 ].

The comparative approach adopted by three studies [ 25 , 26 , 40 ] allowed us to better understand the experiences and the different effects of caregiving connected to the role played by young and young adult caregivers in the family environment (i.e. adult children vs grandchildren or caregivers vs non-caregivers), and to their age [ 26 ].

In accordance with the literature [ 16 , 17 ], the selected studies showed that among young family caregivers, females are more involved than males in caregiving activities.

As far as the impact of caregiving is concerned, this review increases the knowledge about the impact of caregiving on young caregivers’ psychological health [ 45 , 47 ] and social life [ 28 , 49 , 50 ]. Accordingly with the literature [ 68 ], this review showed that caregiving activities can have, even simultaneously, a positive and a negative impact on the youngsters’ different life realms. For example, some studies highlighted an improvement in self-image [ 5 , 25 , 26 , 40 , 64 , 65 ], and one of these [ 5 ] even reported a worsening on it. Some studies underlined negative effects on social life in and outside the family environment [5; 25, 64, 42], while others recorded positive ones [ 5 , 26 ].

Moreover, this review allowed us to raise the specificities of caregiving relationship between young people and older relatives in comparison to the caregiving experience of adult caregivers, as conceptualized in the CSA theoretical framework [ 55 ]. In this regard, the results suggest that the CSA model [ 55 ] is just partly applicable to young caregivers for reasons that are mainly due to the young age of the caregivers. In particular, according to this model indeed, the subjective appraisal of the elder’s need for care determines the amount of care which the caregiver thinks it is to provide, so assuming that caregivers are able to appraise the care recipient’s disability and the more suitable response to his/her needs. Conversely, young caregivers may not be able to make a realistic appraisal of the care needs, due to their young age and the dearth of experience and knowledge. Moreover, the CSA model [ 55 ] considers the “overload” a secondary appraisal, so assuming that caregivers are able to identify their level of overload by assessing their own situation and their feelings about caring. This perspective seems to be not appropriate for describing the experience of young caregivers and their level of self-awareness. Furthermore, given that this review highlights that the young caregivers provide more care when their parents experience greater care burden [ 41 ], the role of the parent’s burden in providing care should be taken into account for determining the hours of informal care (“primary appraisal” in the CSA model [ 55 ]) and the young caregivers overload (“secondary appraisal” in the CSA model [ 55 ]). Conversely, a common point of CSA model [ 55 ], which considers adult family caregivers, and the results of this review, focused on young family caregivers, lies in the quality of the relationship between the adult family carer as an element which can affect the perception of the caregiving experience and so the caregivers’ well-being.

The youngsters, even knowing the terms related to the cared-for illness and responding to the parents’ requests for help, often do not fully understand pathology risks [ 26 ]. This exposes them to greater feelings of inadequacy, fear, and frustration [ 26 ] than adult caregivers on whom they often rely for information acquisition [ 27 ], thereby confirming the findings of Järkestig-Berggren et al. [ 46 ]. These findings suggest to improve the Yates model [ 55 ] by highlighting the relevance of this mismatch between the care demand and the young caregivers’ knowledge and emotional resources as factors that could play an important role in determining the caregiving outcomes. Moreover, given that the awareness of this mismatch could encourage adult family members to reshape the requests to young caregivers, this could be an important factor able to reduce the young caregivers burden. Despite these theoretical consequences, this mismatch should be taken into account by professionals responsible for health and social care services and policy makers, in order to provide training interventions and support policies for young and adult caregivers. A relevant aspect that has to be added in the CSA model [ 55 ] is the relevance of supporting young caregivers in understanding the care recipient’s illness. This is related to a communication aspect that could be included in the set of factors stated by the CSA model [ 55 ] and directed at how caregivers appraise the needs for care (primary appraisal). Furthermore, as stated by the CSA model [ 55 ] and confirmed by Chappell et al. [ 69 ] the perceived social support, such as emotional support from family and friends, is strongly related to caregiver’s well-being and unrelated to the burden. Given that the emotional support is relevant also for young caregivers [ 25 , 40 ], providing interventions that address this aspect or specifically focused to develop skills to elicit desired emotional support from family and friends is an important aspect for improving caregivers’ quality of life even with caregiving burden in their lives.

Finally, in light of the insights on the role of the father caregiver in influencing children’s perception of caregiving experience and social responsibility [ 41 ], the relationship of the caregiver with other family members might provide an interesting reading key to identify those “family-embedded” factors that contribute to determine the effects of caregiving on young people in the present as well as in the future (e.g. the willingness to keep on providing care).

Weaknesses of the reviewed studies and suggestion for future research

A key-point in research on young caregivers is the lack of a homogeneous definition of the age range for identifying a young caregiver and of a categorization of different sub-groups of caregivers according to their age. The latter might indeed help scholars capture how motivation to care, needs for help and coping strategies change in different phases of life.

Conscious of this general bias, the selected studies were not without specific weaknesses. The first limitation is the small sample size and the co-presence of individuals carrying out different caregiving activities. Thus, future studies should consider whether to include in samples youngsters playing the role of primary, or secondary or auxiliary caregivers, or whether to include all these categories, and how to control the confounding factors that each role entails (e.g. amount of care and caregiving activities).

Secondly, in the selected studies the illness of the care recipient was not sufficiently analysed as a factor influencing caregiving activities and relationships. Hence, particular attention in the design of future studies should be directed to the impact of different types of care recipient’s illness on the youngsters’ perception of the assistance provided. Given that research has shown specific difficulties to care for older people with dementia [ 70 ], it could be interesting to understand whether cognitive and physical impairment generate different feelings and coping strategies among young caregivers [ 26 ].

Another aspect that could be further investigated concerns the context of care i.e. the grandchildren-grandparents housing condition. Cohabiting with the care recipient, indeed, was not within the sample inclusion criteria of the majority of the reviewed studies, and only one article treats this topic [ 27 ]. Nevertheless, in light of the articles cross-reading, living in a multigenerational environment where there is a grandparent in need of care seems to be a driver for involving the youngest in the caregiving activities, especially if the grandparent(s) suffer from cognitive impairment, dementia, Alzheimer disease [ 41 ]. Thus, further studies that deepen the association between the context of care and the involvement of the young family members in the caregiving activities are welcome.

Moreover, the sex gap is worthy of further study to understand possible differences in reacting to adverse or difficult situations due to care between girls and boys. The supports available for and needed by young caregivers were still inadequately explored. Conversely, the analysis of available public support services allows us to understand to what extent welfare state measures are able to identify and help young family caregivers.

The reviewed studies included in the samples mostly white individuals. Recent literature states that belonging to black and minority communities can be a driver for being a young caregiver [ 47 ] and underlines the influence of cultural patterns on the construction of the meaning of care by young family caregivers [ 71 ]. Thus, it would be important to develop studies involving different minority groups, as well as different countries, since all selected studies have been carried out in the U.S.

One study [ 25 ] highlighted how the perception of care burden can change in accordance with the type of relationship and of emotional bond with the care recipient (e.g. children or grandchildren of the cared-for person). Thus, more studies on the influence of the relational bond on the young caregivers’ experience would be welcome. Moreover, research based on larger and longitudinal samples would allow us to analyze how the caregiving relationship evolves over the years and the effects that it might produce on young people even after the death of the care recipient. In this regard, it is interesting to highlight that none of the reviewed studies investigates the association between the duration of care and the effects of caregiving. This is an aspect which deserves more attention from future studies.

It would also be important to plan research studies able to investigate the cases in which the caregiver provides care to more than one person, including the support offered to primary caregivers [ 65 ]. Furthermore, in light of the contradictory findings concerning the caregiving outcomes on youngsters’ physical, psychological and social well-being, future studies should search for possible factors that can favor the predominance of negative or positive effects and the extent to which the latter can compensate the former.

Suggestions for teachers, health and social workers

Particular attention should also be paid to spread awareness and knowledge of this phenomenon among health and social service professionals, in order to facilitate the identification of young caregivers, offer them support, and make their recruitment by researchers easier. These actions should be taken into account for improving the young caregivers’ well-being and should be added to interventions focused on developing skills to elicit desired emotional support from family and friends, as argued by the CSA model proposed by Yates et al. [ 55 ] and Chappell [ 69 ]. An important topic for future interventions on young caregivers of older relatives will be to explore ways to help their self-identification as caregivers. Furthermore, future studies should consider the welfare and healthcare systems where the caring relationship took place, since this analysis could help us understand to what extent the reasons for caring are driven by exogenous and systemic factors (e.g. availability of services, tailored policies, informal care networks) or by personal ones (e.g. resilience, psychological sources).

Limitations

The searches of the articles were limited to five databases (PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost) accessed by the first author over a specific period of time (January 2019). In order to be more inclusive, the authors added studies selected through a bibliographic research. Moreover, the terms and the Boolean operator applied might not be comprehensive: in particular, specific terms related to the subjects, such as “senior”, “grandparent”, “grandchildren”, “children”, and terms related to a specific pathology, were not included as search terms. Given that our search could not cover all the terms related to the main topic of this article, the results of this systematic review could be not exhaustive and, unknowingly and unintentionally, some papers might have been omitted. Another factor that contributed to the reduction of the included studies is the age ranges adopted for defining young (adult) caregivers and older care recipients. In particular, some studies did not exclusively concern the relationship between young (adult) caregivers and older care recipients and include caregivers older than 40 years or care recipients younger than 60 years. Finally, a further limitation concerns the absence of studies located in the USA, Canada, Europe and Australia among the selected manuscripts. In fact, although the interest of the social sciences for intergenerational relations was born in the USA at the end of the last century and it spread to Europe since the early 2000s, few studies have focused on caregiving relationships within the dyad young grandchild-grandparent (aged 60 and over) i.e. mainly between grandchildren and grandparents [ 72 – 76 ]. This represents a limit of this systematic literature review however not attributable to the authors who explored valuable and rich databases.

The phenomenon of young and young adult caregivers of older family members in need of care is still largely uncovered. Further reflections for finding “shared definitions” are needed, as well as quantitatively large sample and mixed-methods studies for deepening the different aspects of caregiving relationships that have been studied so far. In fact, as stated by the CSA model [ 55 ], caregiving is itself a complex experience whose effects and meanings go beyond the mere dyadic relationship between young caregiver and old care recipient, including the whole family. Considering the CSA model [ 55 ], assumed as theoretical model for framed the findings of this review, this article adds some specific factors related to the young age of the caregivers, such as the role of the parents’ burden in determining the young caregivers’ load and the difficulties presented by young caregivers in understanding the care recipient’s illness. These evidences could improve the CSA model [ 55 ] in order to better analyze the young caregivers’ well-being.

Acknowledgements

The authors would like to thank researchers, professionals and organisations who contributed to the ME-WE project. In particular, authors thank the partner organisations of the ME-WE project (www.me-we.eu), namely: Linnaeus University (Sweden), coordinator; Eurocarers (Belgium); University of Sussex (United Kingdom); Carers Trust (United Kingdom); Kalaidos University of Applied Sciences (Switzerland); Netherlands Institute for Social Research (Netherlands); Vilans (Netherlands); National Institute of Health and Science on Ageing (IRCCS INRCA) (Italy); Anziani e Non Solo (Italy); University of Ljubljana (Slovenia).

Abbreviations

Authors’ contributions.

BD conceptualised and designed the study and drafted the manuscript. MS, SS assisted with the study design. BD, MS and SS analysed the data. All authors provided intellectual content to the manuscript, critical feedback and approved the final version.

The study was conducted in the framework of the ME-WE project, which has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754702. This work was also partially supported by Ricerca Corrente funding from Italian Ministry of Health to IRCCS INRCA. This funding body did not play any role in designing the study nor in data collection, analysis and interpretation, nor in writing this paper.

Availability of data and materials

Ethics approval and consent to participate.

Not applicable as this was a systematic review.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no conflicts of interest.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Change history

A Correction to this paper has been published: 10.1186/s12877-022-02804-2

• Introduction
• Conclusions
• Article Information

CINAHL indicates Cumulated Index to Nursing and Allied Health Literature; OR, odds ratio; RCT, randomized clinical trial; SMD, standardized mean difference.

Since multilevel meta-analyses included several effect estimates from each study, studies may be listed more than once for each analysis. Dots indicate estimates; whiskers, 95% CIs; diamond, summary estimate.

Since multilevel meta-analyses included several effect estimates from each study, studies may be listed more than once for each analysis. Dots indicate estimates; whiskers, 95% CIs; diamond, summary estimate; SMD, standardized mean difference.

eTable 1. Population, Intervention, Comparison, and Outcome (PICO) Table of Study Eligibility Criteria

eTable 2. Study Search Strategy

eTable 3. CINAHL Search Results

eTable 4. Cochrane Search Results

eTable 5. Embase Search Results

eTable 6. Medline Search Results

eTable 7. PsycInfo Search Results

eTable 8. Scopus Search Results

eTable 9. Summary Description of Randomized Clinical Trials Included in the Systematic Review (N = 41)

eTable 10. Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence Profile

eTable 11. Strength of Evidence (Bayes Factors) in the OR and SMD According to Health Care Service

eTable 12. Subgroup Analyses of Postintervention Health Care Utilization According to Participant- and Intervention-Level Factors

eFigure 1. Cochrane Risk-of-Bias Summary and Author Judgments of Low, High and Unclear Risk of Bias Across All Included Studies (N = 41)

eFigure 2. Publication Bias Funnel Plots for Standardized Mean Difference (SMD) and Log Odds Ratio (OR) Random Effect Models of Health Care Utilization Outcomes and Social Support

eFigure 3. Pooled 95% CI Odds Ratio of the Sustained Association of Psychosocial Interventions With Health Care Utilization

eFigure 4. Pooled 95% CI Standardized Mean Difference of the Sustained Association of Psychosocial Interventions With Health Care Utilization

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HaGani N , Surkalim DL , Clare PJ , Merom D , Smith BJ , Ding D. Health Care Utilization Following Interventions to Improve Social Well-Being : A Systematic Review and Meta-analysis . JAMA Netw Open. 2023;6(6):e2321019. doi:10.1001/jamanetworkopen.2023.21019

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Health Care Utilization Following Interventions to Improve Social Well-Being : A Systematic Review and Meta-analysis

• 1 Prevention Research Collaboration, Sydney School of Public Health, The University of Sydney, Sydney, Australia
• 2 National Drug and Alcohol Research Centre, UNSW Sydney, Sydney, Australia
• 3 School of Health Science, Western Sydney University, Sydney, Australia
• 4 Charles Perkins Centre, the University of Sydney, Sydney, Australia

Question   Is there an association between psychosocial interventions and health care service use, and does the association differ by sociodemographic or intervention characteristic?

Findings   This systematic review and meta-analysis including 41 studies and 7842 participants found that psychosocial interventions were associated with decreased health care use in most health services and increased use of outpatient care. The greatest health care decrease was among caregivers and individuals with mental illnesses and in interventions delivered 1-on-1 by health professionals.

Meaning   These findings suggest that psychosocial interventions were associated with reduced health care use.

Importance   It has been suggested that interventions that aim to improve social well-being may contribute to decreased health care use; however, such evidence has not been fully systematically synthesized.

Objective   To systematically review and meta-analyze available evidence on the associations between psychosocial interventions and health care utilization.

Data Sources   Medline, Embase, PsycInfo, Cumulated Index to Nursing and Allied Health Literature, Cochrane, Scopus, Google Scholar, and reference lists of systematic reviews were searched from inception until November 31, 2022.

Study Selection   Included studies were randomized clinical trials reporting on both health care utilization and social well-being outcomes.

Data Extraction and Synthesis   The reporting of the systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline. Full-text and quality assessments were conducted by 2 reviewers independently. Multilevel random-effects meta-analyses were used to synthesize the data. Subgroup analyses were conducted to examine the characteristics associated with decreased health care use.

Main Outcomes and Measures   The outcome of interest was health care utilization, including primary, emergency, inpatient, and outpatient care services. Social well-being was measured as social support, social participation, social relationships, community support, social integration, or loneliness.

Results   A total of 41 studies were retrieved from 18 969 citations; 37 studies were eligible for meta-analysis. Data were analyzed for 7842 participants, including 2745 older adults, 1579 young women considered to be at risk of social and mental health disadvantages, 1118 people with chronic illnesses, 1597 people with mental illnesses, and 803 caregivers. The odds ratio (OR) random-effects model showed an overall reduction in health care use (OR, 0.75; 95% CI, 0.59 to 0.97), but the standardized mean difference (SMD) random effect model showed no association. An improvement in health care utilization was observed in association with social support interventions (SMD, 0.25; 95% CI, 0.04 to 0.45) but not in loneliness interventions. Subgroup analysis indicated a reduced length of inpatient visits (SMD, −0.35; 95% CI, −0.61 to −0.09) and number of emergency care visits (OR, 0.64; 95% CI, 0.43 to 0.96) following the intervention. However, an increase in outpatient care associated with psychosocial interventions was observed (SMD, 0.34; 95% CI, 0.05 to 0.62). The largest reductions in health care use were associated with interventions among caregivers (OR, 0.23; 95% CI, 0.07 to 0.71) and individuals with mental illnesses (OR, 0.31; 95% CI, 0.13 to 0.74).

Conclusions   These findings suggest that psychosocial interventions were associated with most measures of health care utilization. As the association differed by participant and intervention delivery characteristics, these characteristics should be considered in the design of future interventions.

Social well-being is an umbrella term that refers to the actual or perceived availability of social resources, such as social networks. 1 A lack of social well-being can manifest in problems, such as loneliness and social isolation, that are important public health concerns 2 - 4 and can lead to chronic diseases and premature mortality. 5 - 7

Another public health challenge faced by many countries is escalating health care costs associated with population aging and increasing prevalence of chronic disease. As this trend is expected to continue, 8 decision-makers need to find solutions to reduce health care spending by designing and implementing efficient and equitable health services and minimizing unnecessary health care use. Promising evidence from observational studies has suggested that better social well-being is associated with lower health care utilization, 9 - 12 indicating that psychosocial interventions to address social well-being may reduce health care demand. 13 , 14

To date, psychosocial interventions have been conducted among a variety of populations 15 , 16 using myriad approaches, such as individual or group therapy, group-based activities, peer support, and outreach and befriending strategies. 17 , 18 Besides positive associations with loneliness, social interaction, and perceptions of support, 19 , 20 some psychosocial interventions have been found to be associated with decreases in unnecessary health service use and costs in some populations, such as older adults, survivors of breast cancer, and people with mental illnesses. 17 , 18 , 21 For example, peer support interventions and multicomponent psychosocial interventions were associated with decreased use of general practitioners and emergency care among verity of populations. 18 , 22 However, for outpatient care, such as visits to specialists, most studies showed no significant changes. 22 - 24

Despite the associations found between psychosocial interventions and health care utilization, evidence on this topic has not been systematically synthesized or quantitatively summarized, to our knowledge. 13 Furthermore, we do not yet know what intervention characteristics are associated with lower health care use. To address these gaps, we aimed to synthesize the associations among psychosocial interventions, health care utilization, and social well-being and identify characteristics associated with the variability in effect sizes of these outcomes.

The reporting of the systematic review and meta-analysis adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analyses ( PRISMA ) reporting guideline. The protocol is registered in the PROSPERO database under record No. CRD42021273388 .

Psychosocial interventions that used a randomized clinical trial design to improve social well-being were included. To be eligible, studies needed to report on at least 1 health care utilization–related outcome and at least 1 social well-being–related outcome. Health care utilization refers to using primary care (visits to the general practitioner or nurse), emergency care (visits to the emergency department), inpatient care (eg, number of hospitalizations and readmissions, length of stay), and outpatient care (visits to a specialist, such as a cardiologist, obstetrician, or psychiatrist) services. Social well-being covers multiple domains, including social support, social participation, social relationships, community support, and loneliness. The population, intervention, control, and outcomes data are presented in eTable 1 in Supplement 1 .

A comprehensive search was conducted from inception until May 31, 2021, and an update search until November 31, 2022, in the following databases: Medline, Embase, PsycInfo, Cumulated Index to Nursing and Allied Health Literature, Cochrane, and Scopus. Search terms on the concepts of health care utilization, social well-being, and psychosocial interventions were combined with AND (specific search terms and search results are presented in eTables 2-8 in Supplement 1 ). Google Scholar, reference lists of the included studies, and relevant systematic reviews 10 , 13 , 14 , 25 were manually searched for additional potential studies. All records were imported to Covidence reference management software (Veritas Health Innovation). After duplicates were removed, titles and abstracts were assessed according to the eligibility criteria. The full-text review was conducted by 2 reviewers (N.H. and D.S.) independently. Disagreements were resolved by a third reviewer (D.D., D.M., or B.J.S.). Data were extracted by 1 reviewer (N.H.) and a sample of the extracted data (approximately 30%) was reviewed by a second reviewer (D.D.). Where means and SDs were missing, they were estimated from other measures of effect 26 or imputed from other studies, 22 , 26 , 27 as suggested by Cochrane. 28

For the main outcome of health care utilization, 2 types of data were extracted for the intervention and control groups: raw means and SDs to calculate standardized mean differences (SMDs) and numbers and percentages of health care users to calculate odds ratios (ORs). Some studies included multiple follow-ups after their intervention. Data were extracted and analyzed from each study for the first follow-up immediately after the intervention and for the last follow-up after the intervention, regardless of specific durations of the follow-ups.

All studies were assessed for risk of bias (ROB) using the Cochrane Handbook for Systematic Reviews of Interventions, Version 5.1.0 . 29 Assessment was done using Covidence and RevMan version 5.4 (Cochrane) tools. Studies were assessed by 2 independent reviewers (N.H. and D.L.S.). Conflicts were resolved by consultations with a third reviewer (D.M., B.J.S., or D.D.). Each study was assessed on 7 different domains: random sequence generation, allocation concealment, blinding of participants and personnel, blinding of outcome assessment, incomplete outcome data, selective reporting, and other biases. Each domain received a judgement of low, high, or unclear ROB.

Publication bias was examined using funnel plots and an extension of Egger regression test was used to quantify the funnel plot asymmetry. 30 This included using a measure of effect size precision as a predictor in a meta-regression. 31  P  < .05 indicated a substantial asymmetry in the funnel plot that could have been caused by publication bias.

Certainty of evidence was assessed for each of the overall outcomes using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. 32 , 33 The assessment was performed using the GRADEpro GDT software (McMaster University and Evidence Prime). GRADE domains were assessed according to the level of uncertainty (ie, not serious, serious, or very serious). The overall certainty was categorized as very low, low, moderate, or high. Certainty was downgraded 1 level per limitation, starting from high certainty. 33

Results were combined and analyzed using random-effects models. Separate meta-analytic estimates were calculated for studies that reported on SMDs and ORs. To account for multiple dependent effect sizes, 34 we performed a 3-level meta-analysis. The effect sizes of the overall and different types of health care utilization were calculated for the immediate and sustained outcomes after interventions. Subgroup analyses were used to identify differences according to participant characteristics, such as age, gender, and population groups, and intervention characteristics, including type (individual vs group), duration (number of months), and delivery personnel (health professionals, peers, and activity coordinators). All analyses were performed using the meta and metafor libraries of R software version 4.1.3 (R Project for Statistical Computing). Bayes factors (BFs) were calculated to examine the strength of evidence using an online calculator. 35 BFs with a value between 3 and 10 indicate moderate relative evidence for the alternative hypothesis; BFs between 0.3 and 3, inconclusive evidence; and BFs less than 0.3, moderate evidence for the null hypothesis. 36 Expected effect sizes were estimated based on previous meta-analyses on related topics. 14 , 37 For the SMD random-effects model, the expected SMD was set to −0.3. Similarly, the expected OR was set to 0.70 (30% reduction). For the alternative hypothesis of the social support measure and outpatient care use, we used an SMD of 0.3 and an OR of 1.5, since they were associated positively with intervention effect size.

P values were 2-sided, and statistical significance was set at P  < .05. The last analysis update was conducted between January 12 and 19, 2023.

Of 18 968 records identified, 268 full texts articles were assessed for eligibility, 41 studies met the inclusion criteria for the systematic review. 18 , 21 - 24 , 26 , 27 , 38 - 71 Of these, 21 studies 22 - 24 , 27 , 40 , 41 , 44 - 46 , 49 , 50 , 53 , 54 , 58 , 59 , 63 , 65 - 69 were included in the OR health care utilization meta-analysis, 18 studies 18 , 23 , 24 , 26 , 38 - 43 , 48 , 51 , 55 , 58 , 60 , 64 , 67 , 70 were included in the SMD health care utilization meta-analysis, 27 studies 18 , 22 - 24 , 26 , 27 , 38 - 40 , 42 - 44 , 46 , 51 , 52 , 54 , 55 , 58 - 64 , 67 , 68 , 71 were included in the social support SMD meta-analysis, and 3 studies 26 , 40 , 70 were included in the loneliness SMD meta-analysis ( Figure 1 ). Data were analyzed for 7842 participants, including 2745 older adults, 1579 young women considered at risk of social and mental health disadvantages (1 study among women in a shelter for family violence survivors, 1 study among women at risk for postpartum depression and 1 study among women from disadvantage living areas), 1118 people with chronic illnesses, 1597 people with mental illnesses, and 803 caregivers.

eTable 9 in Supplement 1 presents the characteristics of the included studies. The included studies were published between 1995 and 2022. Most were conducted in the UK (10 studies 21 , 23 , 38 , 39 , 41 , 51 , 61 , 67 , 69 , 71 ) or other European countries (8 studies 18 , 26 , 42 , 48 , 49 , 65 , 66 , 70 ); 6 studies 43 , 44 , 54 , 55 , 59 , 60 were undertaken in China, 7 studies 22 , 24 , 27 , 46 , 47 , 52 , 64 were undertaken in Canada, 6 studies 38 , 40 , 45 , 50 , 58 , 68 were undertaken in the US, and 1 study each was conducted in Singapore, 62 Columbia, 63 Australia, 53 and Zambia. 57 Fourteen studies 24 , 38 - 49 , 72 had sample sizes of fewer than 100 participants, 18 studies 18 , 22 , 27 , 50 - 64 had samples of 100 to 200 participants, 7 studies 23 , 26 , 65 - 69 included 200 to 1000 participants, and 2 studies 70 , 71 had sample sizes of more than 1000 participants. Studied populations included 7 studies 43 , 47 , 49 , 50 , 53 - 55 of caregivers, 9 studies of people with physical illnesses (6 on heart disease, 22 , 41 , 44 , 48 , 51 , 62 1 on HIV, 66 1 on stroke, 57 and 1 on multimorbidity 42 ), 11 studies 21 , 27 , 45 , 56 , 58 - 61 , 63 , 68 , 69 of people with mental illnesses, 7 studies 18 , 26 , 39 , 46 , 52 , 65 , 70 of older adults, 6 studies 23 , 24 , 40 , 64 , 67 , 71 of postnatal young women, and 1 study 38 of women at a domestic violence shelter. Interventions were delivered by health professionals (28 studies 18 , 23 , 26 , 38 , 40 , 42 - 44 , 46 - 50 , 52 - 54 , 56 - 60 , 62 - 66 , 70 , 71 ), peer volunteers (8 studies 21 , 22 , 24 , 27 , 45 , 55 , 68 , 69 with individuals with lived experience of health challenges or services), or a coordinator on behalf of the intervention team (5 studies 39 , 41 , 51 , 61 , 67 ). Sixteen interventions 18 , 26 , 27 , 38 , 39 , 41 , 42 , 49 , 51 , 55 , 60 , 63 - 65 , 68 , 71 were group-based, 18 interventions 18 , 21 - 24 , 40 , 43 , 44 , 46 , 47 , 52 - 54 , 56 , 61 , 62 , 66 , 67 , 69 were delivered to individuals 1-on-1, and 7 interventions 45 , 48 , 50 , 57 - 59 , 70 included both individual and group components. Most of the control groups received standard care (31 studies 18 , 21 - 24 , 27 , 40 , 41 , 43 - 49 , 52 - 56 , 58 - 63 , 65 - 67 , 69 , 70 ). Two studies 26 , 42 used a waitlist control, whereas 8 studies 38 , 39 , 50 , 51 , 57 , 64 , 68 , 71 had a minimal intervention as a control condition. Seventeen interventions 18 , 40 , 41 , 43 , 44 , 46 , 47 , 49 , 51 , 52 , 55 , 60 , 65 - 68 , 70 were 6 to 12 months long, and the remainder 18 , 21 - 24 , 26 , 27 , 38 , 39 , 42 , 45 , 48 , 50 , 53 , 54 , 56 - 59 , 61 - 64 , 69 , 71 were 4 months or shorter.

Sixteen studies 18 , 21 , 40 , 42 , 46 , 50 , 52 , 54 - 56 , 60 , 62 , 64 , 66 , 67 , 69 were classified as low risk of bias; 6 studies, 23 , 26 , 44 , 47 , 49 , 57 medium risk; and 19 studies 22 , 24 , 27 , 38 , 39 , 41 , 43 , 45 , 48 , 51 , 53 , 58 , 59 , 61 , 63 , 65 , 68 , 70 , 71 high risk. Most interventions were classified as low risk for randomization (31 interventions 18 , 21 - 23 , 26 , 27 , 38 - 41 , 44 , 46 , 48 - 50 , 52 - 57 , 60 - 62 , 64 , 65 , 67 , 69 , 71 [76%]), allocation concealment (27 interventions 21 - 24 , 26 , 38 , 40 - 44 , 46 , 47 , 49 , 50 , 52 , 54 - 57 , 60 , 62 , 64 - 67 , 69 [66%]) and attrition bias (30 interventions 18 , 21 , 22 , 24 , 27 , 40 - 44 , 46 - 50 , 52 - 56 , 58 , 60 , 62 - 65 , 67 - 70 [73%]). There were 23 interventions 18 , 21 , 23 , 24 , 26 , 39 , 40 , 42 , 46 , 48 , 53 - 57 , 60 , 62 - 64 , 66 , 67 , 69 , 70 (56%) considered low risk for reporting bias. Only 2 studies 18 , 21 , 23 , 24 , 26 , 39 , 40 , 42 , 46 , 48 , 53 - 57 , 60 , 62 - 64 , 66 , 67 , 69 , 70 (5%) had low risk in the blinding of participants and personnel domain, and 19 studies 18 , 21 , 23 , 24 , 27 , 44 , 46 , 50 , 52 , 54 , 55 , 58 , 60 , 62 - 64 , 66 , 68 , 69 (46%) had low risk in the blinding of outcome data domain (eFigure 1 in Supplement 1 ).

The evidence for the immediate postintervention health care utilization and social support outcomes using ORs was evaluated with a moderate level of certainty. The evidence for the sustained health care utilization and loneliness outcomes was assessed with low levels of certainty. Evidence for both immediate and sustained health care utilization outcomes using SMDs was assessed with a very low level of certainty (eTable 10 in Supplement 1 ).

According to the random-effects model of studies reporting ORs, the intervention group had significant lower odds of using health care compared with the control group (OR, 0.75; 95% CI, 0.59 to 0.97). However, the SMD random-effects model was not significant. When looking at different services, the OR model showed sizeable and significant reductions in the odds of emergency care use (OR, 0.64; 95% CI, 0.43-0.96) among the intervention groups. The SMD model showed significant increase in outpatient care (SMD, 0.34; 95% CI, 0.05-0.62), a decrease in length of inpatient care (SMD, −0.35; 95% CI, −0.61 to −0.09) by the intervention group. Heterogeneity was significant for both the OR and SMD random-effects models, suggesting that the amount of between-study variability was greater than would be expected by chance ( Figure 2 and Figure 3 ).

The strength of evidence was moderate for the overall OR random-effects model (BF = 5.63) and was inconclusive for the overall SMD random-effects model (BF = 0.84). Strong relative evidence for the alternative hypothesis was found in the SMD model for inpatient length (BF > 10) and moderate evidence was found for inpatient and outpatient services utilization (BF, 3-10). In the OR models, we found moderate evidence for the alternative hypothesis for primary care, inpatient, and emergency care. We also found moderate evidence for the alternative hypothesis for social support in the SMD model (BF = 7.21) (eTable 11 in Supplement 1 ).

In both the OR and SMD models, we observed significant decreases in health care use after interventions in studies conducted in China compared with other countries. 43 - 55 , 59 , 60 In the OR model only, we observed significant decreases in health care use after interventions in studies conducted in the US and Australia. 40 , 45 , 50 , 53 , 58 , 68 In the OR model, we also observed a decrease in health care use in studies that included participants aged 30 to 60 years. 27 , 44 , 45 , 50 , 53 , 54 , 59 , 68 , 69 Reductions in health care use were observed in studies among caregivers 49 , 50 , 53 , 54 and individuals with mental illnesses 27 , 45 , 58 , 59 , 63 , 68 , 69 compared with other population groups, but only in the OR model. Single-component interventions that were based on the individual level, shorter (1-4 months), and delivered by health professionals were associated with significant decreases in health care use as well. However, in the SMD model, longer interventions were significantly associated with lower health care use after the interventions (eTable 12 in Supplement 1 ).

Measures of effect were calculated for the last follow-up measure in a subset of 5 studies 22 , 23 , 54 , 59 , 67 that included ORs and 5 studies23,61,66,70,73 that included 13 SMDs that included more than 1 follow-up (eFigure 3 and eFigure 4 in Supplement 1 ). The OR random-effects model showed a significant decrease only in inpatient care (OR, 0.52; 95% CI, 0.28 to 0.98) and the SMD model showed a lower length of inpatient care (SMD, −1.21; 95% CI, −1.67 to −0.75).

Social support and loneliness were the primary domains of social well-being reported, and these were examined as secondary outcomes only in an SMD meta-analysis ( Figure 4 and Figure 5 ). There was a statistically significant postintervention increase in social support but not in loneliness. Subgroup analyses of participants’ characteristics revealed a significant increase in social support following interventions conducted in China, 43 , 44 , 54 , 55 , 59 , 60 among participants aged 30 to 60 years, 27 , 38 , 43 , 44 , 54 , 55 , 59 , 61 , 64 , 68 men, 22 , 27 , 44 , 51 , 55 , 60 , 62 , 63 , 68 and people with chronic illnesses. 22 , 42 , 44 , 51 , 62 Analyses by intervention characteristics found improvements in social support following longer interventions, 1-on-1 interventions, and interventions delivered by health professionals.

All the OR and SMD random-effects models were tested for publication bias, except for the model for loneliness due to the small number of studies (eFigure 2 in Supplement 1 ). No publication bias was found for the meta-analyses of ORs in either the immediate or sustained effect models. For the meta-analysis of SMD, the regression test for asymmetry reached statistical significance in both the immediate and sustained effect models, indicating significant publication bias. There was no bias found in the funnel plot of the SMD social support model (eFigure 2 in Supplement 1 ).

This systematic review and meta-analysis found that psychosocial interventions were associated with improved health care utilization. Models showed strong to moderate strength of evidence by BFs for number of inpatient visits and length of inpatients visits associated with social support. Emergency and primary care utilization also showed moderate strength of evidence for the OR model. Additionally, these interventions were associated with improvements in social support but not loneliness. Considering the need to reduce unnecessary health care spending in many countries, our findings have highlighted the potential for psychosocial interventions to reduce health care utilization. The largest reduction in health care use occurred in inpatient visit numbers and length of stay, emergency admissions, and primary care services. The reduction in inpatient and emergency care utilization could be due to an instrumental support system that may have prevented a health condition from deteriorating 73 by direct care or by encouraging patients to seek treatment earlier. 14 In addition, the support provided could also prevent or lower stress and anxiety associated with different health conditions, 74 which may have contributed to reduction in unnecessary visits to the hospital. 75 , 76 The decrease in health care use could also be a result of an improvement in overall health. 77 , 78 These findings suggest that the emotional, informational, and instrumental support provided by psychosocial interventions may decrease the need to seek medical care excessively and may contribute to reduced health care expenses and improved service efficiency. 52 , 79 - 81 Such outcomes may last over longer periods, although the current evidence on sustained outcomes is limited by the small number of studies with sustained follow-up.

Outpatient care was the only outcome that showed an increase. This supports previous findings of a positive association between social well-being and outpatient visits. 10 , 82 Outpatient care often supports tertiary-level prevention, which can sustain recovery and reduce the need for urgent care. 83 Therefore, our findings suggest that psychosocial interventions may lead to improved preventive care in the outpatient context, which in turn, may lead to less emergency and inpatient care utilization. 84 , 85

Our subgroup analysis found a significant decrease in health care use among caregivers, suggesting the importance of including caregivers in psychosocial interventions. A significant decrease in health care use was also found among people with mental illness. As people with mental illnesses can experience poor social well-being due to isolation and perceived stigma, 86 - 88 psychosocial interventions may provide much-needed social support for this group. Our subgroup analysis also found that interventions conducted in China and the US showed significant decreases in postintervention health care use, possibly due to differences in measurements or sample sizes. 89 However, some of these differences may reflect country-specific variations in standards of care, service availability, health professional capacity, and cultural differences in health-seeking practices. 90 - 92 We found that in interventions delivered by health professionals, there was a significant decrease in postintervention health care use. Health care professionals are often perceived as trusted sources of information and support, which may have contributed to more favorable outcomes. This finding echoes previous observations regarding implementing social care within health care settings 93 , 94 and including health professionals in the delivery of psychosocial interventions. 85 Finally, the decrease in health care use was more pronounced in individual-based interventions that included 1-on-1 activities. This finding highlights the importance of tailoring psychosocial interventions according to patients’ needs, as applied in case and disease management models. 85 , 95

Our analysis also found a significant increase in postintervention social support. Previous studies found that loneliness and low social support were associated with more health care utilization, 10 , 96 , 97 although a rapid review did not find a consistent association between psychosocial interventions and improvement in loneliness. 13 Likewise, our study found no association of psychosocial interventions with loneliness, which is most likely due to the inconsistency in the results and the lack of power. These findings highlight the complex and measure-specific nature of the association between social well-being and health care utilization. 10

This systematic review and meta-analysis has several limitations. First, the number of studies included in the analysis and the small sample sizes limited the certainty about the effect sizes and our ability to conduct multivariate analyses. Second, the use of ORs and SMDs is prone to measurement bias and therefore may have contributed to bias in the pooled effect size. Furthermore, most studies included in the SMD analysis reported means and SDs despite the underlying distributions being nonparametric. However, assuming that the SMD distribution shape remained the same, the SMD should provide a consistent estimate of the mean difference. In addition, synthesizing both ORs and SMDs should provide stronger and more complete evidence than relying on 1 measure of effect only. Third, the high level of heterogeneity among the studies may have contributed to the variability in the outcomes. We addressed this by conducting subgroup analyses. Fourth, the regression test for asymmetry indicated significant publication bias in the SMD meta-analysis, but since this analysis showed no association, the inclusion of unpublished data is unlikely to change our results. Fifth, relying on English abstracts may have led to the exclusion of eligible studies published in other languages.

The findings of this systematic review and meta-analysis suggest that psychosocial interventions were associated with improvements in patients’ social support and health care use, possibly through increasing outpatient care while reducing the use of emergency and inpatient care. Our results also suggest that interventions should be tailored to the needs of patients and include health professionals as the deliverers. In addition, our findings about individual- and intervention-level characteristics may inform the design and implementation of future psychosocial interventions by providing information on the variables associated with intervention success. More randomized clinical trials with longer-term follow-ups are needed to better understand the sustained postintervention outcomes of health care use associated with psychosocial interventions.

Accepted for Publication: May 16, 2023.

Published: June 29, 2023. doi:10.1001/jamanetworkopen.2023.21019

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 HaGani N et al. JAMA Network Open .

Corresponding Author: Neta HaGani, MSW, Prevention Research Collaboration, School of Public Health, The Hub Charles Perkins Centre (D17), The University of Sydney, Level 6, Sydney, NSW 2006, Australia ( [email protected] ).

Author Contributions: Ms HaGani had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Senior authorship shared: Drs Merom, Smith, and Ding.

Concept and design: HaGani, Merom, Smith, Ding.

Acquisition, analysis, or interpretation of data: HaGani, Surkalim, Clare, Merom, Ding.

Drafting of the manuscript: HaGani, Smith.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: HaGani, Clare.

Obtained funding: HaGani.

Administrative, technical, or material support: HaGani, Smith, Ding.

Supervision: Clare, Merom, Smith, Ding.

Conflict of Interest Disclosures: None reported.

Funding/Support: Prof Ding is funded by the National Health and Medical Research Council Emerging Leader fellowship (award No. 2009254).

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

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Older residents' perspectives on aged sexuality in institutionalized elderly care: a systematic literature review

Affiliations.

• 1 Centre for Biomedical Ethics and Law, KU Leuven, Belgium. Electronic address: [email protected].
• 2 Centre for Biomedical Ethics and Law, KU Leuven, Belgium. Electronic address: [email protected].
• PMID: 26296654
• DOI: 10.1016/j.ijnurstu.2015.07.007

Objectives: The aim of this systematic literature review is to investigate older residents' thoughts on, experiences of and engagement in sexual behavior and aged sexuality within institutionalized elderly care.

Design: Systematic literature review.

Data sources: We conducted an extensive search of the electronic databases Cinahl, Medline, Pubmed, Embase, Web of Science and Invert for papers published between January 1980 and October 2014 when the searches were closed. Additional papers were identified through forward and backward citation chasing.

Review methods: Data from relevant studies were extracted by means of a data extraction form. Relevant data were isolated, summarized, compared, related and categorized according to theme. Quality assessment of the included studies focused on their adequacy of reporting the study's research aim, sampling, collection, and analysis procedures, ethical considerations and results.

Results: Twenty-five appropriate studies were identified. These studies varied in research design (using surveys, vignettes, focus groups, interviews, or observation), objectives, quality of reporting, and sample characteristics (i.e. male and/or female long-term care residents with and/or without dementia). Yet, they all point to the relevance of sex and sexuality in old age and emphasize the highly individual character of both sexual interest and expression. Older residents who wish to sexually express themselves, might do this in a wide variety of ways, including, but not limited to, daydreaming, dressing-up, looking for emotional and intellectual intimacy, stroking, caressing, kissing, and engaging in sexual intercourse. Overall, residents appear to have a rather positive attitude toward aged sexuality as such. When it comes to specific sexual behaviors or homosexuality, however, attitudes tend to be more negative. The perceived appropriateness of the displayed behavior is a predominant factor in determining older people's reactions to the sexual behavior of co-residents, rather than the potential emotional discomfort brought on by witnessing this behavior.

Conclusions: Relatively little work has been published on older residents' perspectives regarding aged sexuality in institutionalized elderly care. If, however, we wish to devote ourselves to individualized or person-centered nursing care, we will have to gain more insight into the patient's perspective and take notice of the needs, expectations, attitudes, experiences and behaviors of residents with regard to (aged) sexuality. Hence more research is needed that depicts the issue of aged sexuality in institutionalized elderly care from a patient's and thus resident oriented perspective.

Keywords: Aged; Attitude; Dementia; Residential facilities; Review; Sexual behavior; Sexuality.

Copyright © 2015 Elsevier Ltd. All rights reserved.

Publication types

• Systematic Review
• Aged / psychology*
• Aged, 80 and over / psychology
• Alzheimer Disease / psychology
• Homophobia / psychology
• Institutionalization*
• Sexual Behavior
• Sexuality / psychology*

• Open access
• Published: 01 May 2024

The effectiveness of virtual reality training on knowledge, skills and attitudes of health care professionals and students in assessing and treating mental health disorders: a systematic review

• Cathrine W. Steen 1 , 2 ,
• Kerstin Söderström 1 , 2 ,
• Bjørn Stensrud 3 ,
• Inger Beate Nylund 2 &
• Johan Siqveland 4 , 5  

BMC Medical Education volume  24 , Article number:  480 ( 2024 ) Cite this article

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Virtual reality (VR) training can enhance health professionals’ learning. However, there are ambiguous findings on the effectiveness of VR as an educational tool in mental health. We therefore reviewed the existing literature on the effectiveness of VR training on health professionals’ knowledge, skills, and attitudes in assessing and treating patients with mental health disorders.

We searched MEDLINE, PsycINFO (via Ovid), the Cochrane Library, ERIC, CINAHL (on EBSCOhost), Web of Science Core Collection, and the Scopus database for studies published from January 1985 to July 2023. We included all studies evaluating the effect of VR training interventions on attitudes, knowledge, and skills pertinent to the assessment and treatment of mental health disorders and published in English or Scandinavian languages. The quality of the evidence in randomized controlled trials was assessed with the Cochrane Risk of Bias Tool 2.0. For non-randomized studies, we assessed the quality of the studies with the ROBINS-I tool.

Of 4170 unique records identified, eight studies were eligible. The four randomized controlled trials were assessed as having some concern or a high risk of overall bias. The four non-randomized studies were assessed as having a moderate to serious overall risk of bias. Of the eight included studies, four used a virtual standardized patient design to simulate training situations, two studies used interactive patient scenario training designs, while two studies used a virtual patient game design. The results suggest that VR training interventions can promote knowledge and skills acquisition.

Conclusions

The findings indicate that VR interventions can effectively train health care personnel to acquire knowledge and skills in the assessment and treatment of mental health disorders. However, study heterogeneity, prevalence of small sample sizes, and many studies with a high or serious risk of bias suggest an uncertain evidence base. Future research on the effectiveness of VR training should include assessment of immersive VR training designs and a focus on more robust studies with larger sample sizes.

Trial registration

This review was pre-registered in the Open Science Framework register with the ID-number Z8EDK.

Peer Review reports

A robustly trained health care workforce is pivotal to forging a resilient health care system [ 1 ], and there is an urgent need to develop innovative methods and emerging technologies for health care workforce education [ 2 ]. Virtual reality technology designs for clinical training have emerged as a promising avenue for increasing the competence of health care professionals, reflecting their potential to provide effective training [ 3 ].

Virtual reality (VR) is a dynamic and diverse field, and can be described as a computer-generated environment that simulates sensory experiences, where user interactions play a role in shaping the course of events within that environment [ 4 ]. When optimally designed, VR gives users the feeling that they are physically within this simulated space, unlocking its potential as a dynamic and immersive learning tool [ 5 ]. The cornerstone of the allure of VR is its capacity for creating artificial settings via sensory deceptions, encapsulated by the term ‘immersion’. Immersion conveys the sensation of being deeply engrossed or enveloped in an alternate world, akin to absorption in a video game. Some VR systems will be more immersive than others, based on the technology used to influence the senses. However, the degree of immersion does not necessarily determine the user’s level of engagement with the application [ 6 ].

A common approach to categorizing VR systems is based on the design of the technology used, allowing them to be classified into: 1) non-immersive desktop systems, where users experience virtual environments through a computer screen, 2) immersive CAVE systems with large projected images and motion trackers to adjust the image to the user, and 3) fully immersive head-mounted display systems that involve users wearing a headset that fully covers their eyes and ears, thus entirely immersing them in the virtual environment [ 7 ]. Advances in VR technology have enabled a wide range of VR experiences. The possibility for health care professionals to repeatedly practice clinical skills with virtual patients in a risk-free environment offers an invaluable learning platform for health care education.

The impact of VR training on health care professionals’ learning has predominantly been researched in terms of the enhancement of technical surgical abilities. This includes refining procedural planning, familiarizing oneself with medical instruments, and practicing psychomotor skills such as dexterity, accuracy, and speed [ 8 , 9 ]. In contrast, the exploration of VR training in fostering non-technical or ‘soft’ skills, such as communication and teamwork, appears to be less prevalent [ 10 ]. A recent systematic review evaluates the outcomes of VR training in non-technical skills across various medical specialties [ 11 ], focusing on vital cognitive abilities (e.g., situation awareness, decision-making) and interprofessional social competencies (e.g., teamwork, conflict resolution, leadership). These skills are pivotal in promoting collaboration among colleagues and ensuring a safe health care environment. At the same time, they are not sufficiently comprehensive for encounters with patients with mental health disorders.

For health care professionals providing care to patients with mental health disorders, acquiring specific skills, knowledge, and empathic attitudes is of utmost importance. Many individuals experiencing mental health challenges may find it difficult to communicate their thoughts and feelings, and it is therefore essential for health care providers to cultivate an environment where patients feel safe and encouraged to share feelings and thoughts. Beyond fostering trust, health care professionals must also possess in-depth knowledge about the nature and treatment of various mental health disorders. Moreover, they must actively practice and internalize the skills necessary to translate their knowledge into clinical practice. While the conventional approach to training mental health clinical skills has been through simulation or role-playing with peers under expert supervision and practicing with real patients, the emergence of VR applications presents a compelling alternative. This technology promises a potentially transformative way to train mental health professionals. Our review identifies specific outcomes in knowledge, skills, and attitudes, covering areas from theoretical understanding to practical application and patient interaction. By focusing on these measurable concepts, which are in line with current healthcare education guidelines [ 12 ], we aim to contribute to the knowledge base and provide a detailed analysis of the complexities in mental health care training. This approach is designed to highlight the VR training’s practical relevance alongside its contribution to academic discourse.

A recent systematic review evaluated the effects of virtual patient (VP) interventions on knowledge, skills, and attitudes in undergraduate psychiatry education [ 13 ]. This review’s scope is limited to assessing VP interventions and does not cover other types of VR training interventions. Furthermore, it adopts a classification of VP different from our review, rendering their findings and conclusions not directly comparable to ours.

To the best of our knowledge, no systematic review has assessed and summarized the effectiveness of VR training interventions for health professionals in the assessment and treatment of mental health disorders. This systematic review addresses the gap by exploring the effectiveness of virtual reality in the training of knowledge, skills, and attitudes health professionals need to master in the assessment and treatment of mental health disorders.

This systematic review follows the guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analysis [ 14 ]. The protocol of the systematic review was registered in the Open Science Framework register with the registration ID Z8EDK.

We included randomized controlled trials, cohort studies, and pretest–posttest studies, which met the following criteria: a) a population of health care professionals or health care professional students, b) assessed the effectiveness of a VR application in assessing and treating mental health disorders, and c) reported changes in knowledge, skills, or attitudes. We excluded studies evaluating VR interventions not designed for training in assessing and treating mental health disorders (e.g., training of surgical skills), studies evaluating VR training from the first-person perspective, studies that used VR interventions for non-educational purposes and studies where VR interventions trained patients with mental health problems (e.g., social skills training). We also excluded studies not published in English or Scandinavian languages.

Search strategy

The literature search reporting was guided by relevant items in PRISMA-S [ 15 ]. In collaboration with a senior academic librarian (IBN), we developed the search strategy for the systematic review. Inspired by the ‘pearl harvesting’ information retrieval approach [ 16 ], we anticipated a broad spectrum of terms related to our interdisciplinary query. Recognizing that various terminologies could encapsulate our central ideas, we harvested an array of terms for each of the four elements ‘health care professionals and health care students’, ‘VR’, ‘training’, and ‘mental health’. The pearl harvesting framework [ 16 ] consists of four steps which we followed with some minor adaptions. Step 1: We searched for and sampled a set of relevant research articles, a book chapter, and literature reviews. Step 2: The librarian scrutinized titles, abstracts, and author keywords, as well as subject headings used in databases, and collected relevant terms. Step 3: The librarian refined the lists of terms. Step 4: The review group, in collaboration with a VR consultant from KildeGruppen AS (a Norwegian media company), validated the refined lists of terms to ensure they included all relevant VR search terms. This process for the element VR resulted in the inclusion of search terms such as ‘3D simulated environment’, ‘second life simulation’, ‘virtual patient’, and ‘virtual world’. We were given a peer review of the search strategy by an academic librarian at Inland Norway University of Applied Sciences.

In June and July 2021, we performed comprehensive searches for publications dating from January 1985 to the present. This period for the inclusion of studies was chosen since VR systems designed for training in health care first emerged in the early 1990s. The searches were carried out in seven databases: MEDLINE and PsycInfo (on Ovid), ERIC and CINAHL (on EBSCOhost), the Cochrane Library, Web of Science Core Collection, and Scopus. Detailed search strategies from each database are available for public access at DataverseNO [ 17 ]. On July 2, 2021, a search in CINAHL yielded 993 hits. However, when attempting to transfer these records to EndNote using the ‘Folder View’—a feature designed for organizing and managing selected records before export—only 982 records were successfully transferred. This discrepancy indicates that 11 records could not be transferred through Folder View, for reasons not specified. The process was repeated twice, consistently yielding the same discrepancy. The missing 11 records pose a risk of failing to capture relevant studies in the initial search. In July 2023, to make sure that we included the latest publications, we updated our initial searches, focusing on entries since January 1, 2021. This ensured that we did not miss any new references recently added to these databases. Due to a lack of access to the Cochrane Library in July 2023, we used EBMR (Evidence Based Medicine Reviews) on the Ovid platform instead, including the databases Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, and Cochrane Clinical Answers. All references were exported to Endnote and duplicates were removed. The number of records from each database can be observed in the PRISMA diagram [ 14 ], Fig.  1 .

PRISMA flow chart of the records and study selection process

Study selection and data collection

Two reviewers (JS, CWS) independently assessed the titles and abstracts of studies retrieved from the literature search based on the eligibility criteria. We employed the Rayyan website for the screening process [ 18 ]. The same reviewers (JS, CWS) assessed the full-text articles selected after the initial screening. Articles meeting the eligibility criteria were incorporated into the review. Any disagreements were resolved through discussion.

Data extracted from the studies by the first author (CWS) and cross-checked by another reviewer (JS) included: authors of the study, publication year, country, study design, participant details (education, setting), interventions (VR system, class label), comparison types, outcomes, and main findings. This data is summarized in Table  1 and Additional file 1 . In the process of reviewing the VR interventions utilized within the included studies, we sought expertise from advisers associated with VRINN, a Norwegian immersive learning cluster, and SIMInnlandet, a center dedicated to simulation in mental health care at Innlandet Hospital Trust. This collaboration ensured a thorough examination and accurate categorization of the VR technologies applied. Furthermore, the classification of the learning designs employed in the VP interventions was conducted under the guidance of an experienced VP scholar at Paracelcus Medical University in Salzburg.

Data analysis

We initially intended to perform a meta-analysis with knowledge, skills, and attitudes as primary outcomes, planning separate analyses for each. However, due to significant heterogeneity observed among the included studies, it was not feasible to carry out a meta-analysis. Consequently, we opted for a narrative synthesis based on these pre-determined outcomes of knowledge, skills, and attitudes. This approach allowed for an analysis of the relationships both within and between the studies. The effect sizes were calculated using a web-based effect size calculator [ 27 ]. We have interpreted effect sizes based on commonly used descriptions for Cohen’s d: small = 0.2, moderate = 0.5, and large = 0.8, and for Cramer’s V: small = 0.10, medium = 0.30, and large = 0.50.

Risk of bias assessment

JS and CWS independently evaluated the risk of bias for all studies using two distinct assessment tools. We used the Cochrane risk of bias tool RoB 2 [ 28 ] to assess the risk of bias in the RCTs. With the RoB 2 tool, the bias was assessed as high, some concerns or low for five domains: randomization process, deviations from the intended interventions, missing outcome data, measurement of the outcome, and selection of the reported result [ 28 ].

We used the Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool [ 29 ] to assess the risk of bias in the cohort and single-group studies. By using ROBINS-I for the non-randomized trials, the risk of bias was assessed using the categories low, moderate, serious, critical or no information for seven domains: confounding, selection of participants, classification of interventions, deviations from intended interventions, missing data, measurement of outcomes, and selection of the reported result [ 29 ].

We included eight studies in the review (Fig.  1 ). An overview of the included studies is presented in detail in Table  1 .

Four studies were RCTs [ 19 , 20 , 21 , 22 ], two were single group pretest–posttest studies [ 23 , 26 ], one was a controlled before and after study [ 25 ], and one was a cohort study [ 24 ]. The studies included health professionals from diverse educational backgrounds, including some from mental health and medical services, as well as students in medicine, social work, and nursing. All studies, published from 2009 to 2021, utilized non-immersive VR desktop system interventions featuring various forms of VP designs. Based on an updated classification of VP interventions by Kononowicz et al. [ 30 ] developed from a model proposed by Talbot et al. [ 31 ], we have described the characteristics of the interventions in Table  1 . Four of the studies utilized a virtual standardized patient (VSP) intervention [ 20 , 21 , 22 , 23 ], a conversational agent that simulates clinical presentations for training purposes. Two studies employed an interactive patient scenario (IPS) design [ 25 , 26 ], an approach that primarily uses text-based multimedia, enhanced with images and case histories through text or voice narratives, to simulate clinical scenarios. Lastly, two studies used a virtual patient game (VP game) intervention [ 19 , 24 ]. These interventions feature training scenarios using 3D avatars, specifically designed to improve clinical reasoning and team training skills. It should be noted that the interventions classified as VSPs in this review, being a few years old, do not encompass artificial intelligence (AI) as we interpret it today. However, since the interventions include some kind of algorithm that provides answers to questions, we consider them as conversational agents, and therefore as VSPs. As the eight included studies varied significantly in terms of design, interventions, and outcome measures, we could not incorporate them into a meta-analysis.

The overall risk of bias for the four RCTs was high [ 19 , 20 , 22 ] or of some concern [ 21 ] (Fig.  2 ). They were all assessed as low or of some concern in the domains of randomization. Three studies were assessed with a high risk of bias in one [ 19 , 20 ] or two domains [ 22 ]; one study had a high risk of bias in the domain of selection of the reported result [ 19 ], one in the domain of measurement of outcome [ 20 ], and one in the domains of deviation from the intended interventions and missing outcome data [ 22 ]. One study was not assessed as having a high risk of bias in any domain [ 21 ].

Risk of bias summary: review authors assessments of each risk of bias item in the included RCT studies

For the four non-randomized studies, the overall risk of bias was judged to be moderate [ 26 ] or serious [ 23 , 24 , 25 ] (Fig.  3 ). One study had a serious risk of bias in two domains: confounding and measurement of outcomes [ 23 ]. Two studies had a serious risk of bias in one domain, namely confounding [ 24 , 25 ], while one study was judged not to have a serious risk of bias in any domain [ 26 ].

Risk of bias summary: review authors assessments of each risk of bias item in the included non-randomized studies

Three studies investigated the impact of virtual reality training on mental health knowledge [ 24 , 25 , 26 ]. One study with 32 resident psychiatrists in a single group pretest–posttest design assessed the effect of a VR training intervention on knowledge of posttraumatic stress disorder (PTSD) symptomatology, clinical management, and communication skills [ 26 ]. The intervention consisted of an IPS. The assessment of the outcome was conducted using a knowledge test with 11 multiple-choice questions and was administered before and after the intervention. This study reported a significant improvement on the knowledge test after the VR training intervention.

The second study examined the effect of a VR training intervention on knowledge of dementia [ 25 ], employing a controlled before and after design. Seventy-nine medical students in clinical training were divided into two groups, following a traditional learning program. The experimental group received an IPS intervention. The outcome was evaluated with a knowledge test administered before and after the intervention with significantly higher posttest scores in the experimental group than in the control group, with a moderate effects size observed between the groups.

A third study evaluated the effect of a VR training intervention on 299 undergraduate nursing students’ diagnostic recognition of depression and schizophrenia (classified as knowledge) [ 24 ]. In a prospective cohort design, the VR intervention was the only difference in the mental health related educational content provided to the two cohorts, and consisted of a VP game design, developed to simulate training situations with virtual patient case scenarios, including depression and schizophrenia. The outcome was assessed by determining the accuracy of diagnoses made after reviewing case vignettes of depression and schizophrenia. The study found no statistically significant effect of VR training on diagnostic accuracy between the simulation and the non-simulation cohort.

Summary: All three studies assessing the effect of a VR intervention on knowledge were non-randomized studies with different study designs using different outcome measures. Two studies used an IPS design, while one study used a VP game design. Two of the studies found a significant effect of VR training on knowledge. Of these, one study had a moderate overall risk of bias [ 26 ], while the other was assessed as having a serious overall risk of bias [ 25 ]. The third study, which did not find any effect of the virtual reality intervention on knowledge, was assessed to have a serious risk of bias [ 24 ].

Three RCTs assessed the effectiveness of VR training on skills [ 20 , 21 , 22 ]. One of them evaluated the effect of VR training on clinical skills in alcohol screening and intervention [ 20 ]. In this study, 102 health care professionals were randomly allocated to either a group receiving no training or a group receiving a VSP intervention. To evaluate the outcome, three standardized patients rated each participant using a checklist based on clinical criteria. The VSP intervention group demonstrated significantly improved posttest skills in alcohol screening and brief intervention compared to the control group, with moderate and small effect sizes, respectively.

Another RCT, including 67 medical college students, evaluated the effect of VR training on clinical skills by comparing the frequency of questions asked about suicide in a VSP intervention group and a video module group [ 21 ]. The assessment of the outcome was a psychiatric interview with a standardized patient. The primary outcome was the frequency with which the students asked the standardized patient five questions about suicide risk. Minimal to small effect sizes were noted in favor of the VSP intervention, though they did not achieve statistical significance for any outcomes.

One posttest only RCT evaluated the effect of three training programs on skills in detecting and diagnosing major depressive disorder and posttraumatic stress disorder (PTSD) [ 22 ]. The study included 30 family physicians, and featured interventions that consisted of two different VSPs designed to simulate training situations, and one text-based program. A diagnostic form filled in by the participants after the intervention was used to assess the outcome. The results revealed a significant effect on diagnostic accuracy for major depressive disorder for both groups receiving VR training, compared to the text-based program, with large effect sizes observed. For PTSD, the intervention using a fixed avatar significantly improved diagnostic accuracy with a large effect size, whereas the intervention with a choice avatar demonstrated a moderate to large effect size compared to the text-based program.

Summary: Three RCTs assessed the effectiveness of VR training on clinical skills [ 20 , 21 , 22 ], all of which used a VSP design. To evaluate the effect of training, two of the studies utilized standardized patients with checklists. The third study measured the effect on skills using a diagnostic form completed by the participants. Two of the studies found a significant effect on skills [ 20 , 22 ], both were assessed to have a high risk of bias. The third study, which did not find any effect of VR training on skills, had some concern for risk of bias [ 21 ].

Knowledge and skills

One RCT study with 227 health care professionals assessed knowledge and skills as a combined outcome compared to a waitlist control group, using a self-report survey before and after the VR training [ 19 ]. The training intervention was a VP game designed to practice knowledge and skills related to mental health and substance abuse disorders. To assess effect of the training, participants completed a self-report scale measuring perceived knowledge and skills. Changes between presimulation and postsimulation scores were reported only for the within treatment group ( n  = 117), where the composite postsimulation score was significantly higher than the presimulation score, with a large effect size observed. The study was judged to have a high risk of bias in the domain of selection of the reported result.

One single group pretest–posttest study with 100 social work and nursing students assessed the effect of VSP training on attitudes towards individuals with substance abuse disorders [ 23 ]. To assess the effect of the training, participants completed an online pretest and posttest survey including questions from a substance abuse attitudes survey. This study found no significant effect of VR training on attitudes and was assessed as having a serious risk of bias.

Perceived competence

The same single group pretest–posttest study also assessed the effect of a VSP training intervention on perceived competence in screening, brief intervention, and referral to treatment in encounters with patients with substance abuse disorders [ 23 ]. A commonly accepted definition of competence is that it comprises integrated components of knowledge, skills, and attitudes that enable the successful execution of a professional task [ 32 ]. To assess the effect of the training, participants completed an online pretest and posttest survey including questions on perceived competence. The study findings demonstrated a significant increase in perceived competence following the VSP intervention. The risk of bias in this study was judged as serious.

This systematic review aimed to investigate the effectiveness of VR training on knowledge, skills, and attitudes that health professionals need to master in the assessment and treatment of mental health disorders. A narrative synthesis of eight included studies identified VR training interventions that varied in design and educational content. Although mixed results emerged, most studies reported improvements in knowledge and skills after VR training.

We found that all interventions utilized some type of VP design, predominantly VSP interventions. Although our review includes a limited number of studies, it is noteworthy that the distribution of interventions contrasts with a literature review on the use of ‘virtual patient’ in health care education from 2015 [ 30 ], which identified IPS as the most frequent intervention. This variation may stem from our review’s focus on the mental health field, suggesting a different intervention need and distribution than that observed in general medical education. A fundamental aspect of mental health education involves training skills needed for interpersonal communication, clinical interviews, and symptom assessment, which makes VSPs particularly appropriate. While VP games may be suitable for clinical reasoning in medical fields, offering the opportunity to perform technical medical procedures in a virtual environment, these designs may present some limitations for skills training in mental health education. Notably, avatars in a VP game do not comprehend natural language and are incapable of engaging in conversations. Therefore, the continued advancement of conversational agents like VSPs is particularly compelling and considered by scholars to hold the greatest potential for clinical skills training in mental health education [ 3 ]. VSPs, equipped with AI dialogue capabilities, are particularly valuable for repetitive practice in key skills such as interviewing and counseling [ 31 ], which are crucial in the assessment and treatment of mental health disorders. VSPs could also be a valuable tool for the implementation of training methods in mental health education, such as deliberate practice, a method that has gained attention in psychotherapy training in recent years [ 33 ] for its effectiveness in refining specific performance areas through consistent repetition [ 34 ]. Within this evolving landscape, AI system-based large language models (LLMs) like ChatGPT stand out as a promising innovation. Developed from extensive datasets that include billions of words from a variety of sources, these models possess the ability to generate and understand text in a manner akin to human interaction [ 35 ]. The integration of LLMs into educational contexts shows promise, yet careful consideration and thorough evaluation of their limitations are essential [ 36 ]. One concern regarding LLMs is the possibility of generating inaccurate information, which represents a challenge in healthcare education where precision is crucial [ 37 ]. Furthermore, the use of generative AI raises ethical questions, notably because of potential biases in the training datasets, including content from books and the internet that may not have been verified, thereby risking the perpetuation of these biases [ 38 ]. Developing strategies to mitigate these challenges is imperative, ensuring LLMs are utilized safely in healthcare education.

All interventions in our review were based on non-immersive desktop VR systems, which is somewhat surprising considering the growing body of literature highlighting the impact of immersive VR technology in education, as exemplified by reviews such as that of Radianti et al. [ 39 ]. Furthermore, given the recent accessibility of affordable, high-quality head-mounted displays, this observation is noteworthy. Research has indicated that immersive learning based on head-mounted displays generally yields better learning outcomes than non-immersive approaches [ 40 ], making it an interesting research area in mental health care training and education. Studies using immersive interventions were excluded in the present review because of methodological concerns, paralleling findings described in a systematic review on immersive VR in education [ 41 ], suggesting the potential early stage of research within this field. Moreover, the integration of immersive VR technology into mental health care education may encounter challenges associated with complex ethical and regulatory frameworks, including data privacy concerns exemplified by the Oculus VR headset-Facebook integration, which could restrict the implementation of this technology in healthcare setting. Prioritizing specific training methodologies for enhancing skills may also affect the utilization of immersive VR in mental health education. For example, integrating interactive VSPs into a fully immersive VR environment remains a costly endeavor, potentially limiting the widespread adoption of immersive VR in mental health care. Meanwhile, the use of 360-degree videos in immersive VR environments for training purposes [ 42 ] can be realized with a significantly lower budget. Immersive VR offers promising opportunities for innovative training, but realizing its full potential in mental health care education requires broader research validation and the resolution of existing obstacles.

This review bears some resemblance to the systematic review by Jensen et al. on virtual patients in undergraduate psychiatry education [ 13 ] from 2024, which found that virtual patients improved learning outcomes compared to traditional methods. However, these authors’ expansion of the commonly used definition of virtual patient makes their results difficult to compare with the findings in the present review. A recognized challenge in understanding VR application in health care training arises from the literature on VR training for health care personnel, where ‘virtual patient’ is a term broadly used to describe a diverse range of VR interventions, which vary significantly in technology and educational design [ 3 , 30 ]. For instance, reviews might group different interventions using various VR systems and designs under a single label (virtual patient), or primary studies may use misleading or inadequately defined classifications for the virtual patient interventions evaluated. Clarifying the similarities and differences among these interventions is vital to inform development and enhance communication and understanding in educational contexts [ 43 ].

Strengths and limitations

To the best of our knowledge, this is the first systematic review to evaluate the effectiveness of VR training on knowledge, skills, and attitudes in health care professionals and students in assessing and treating mental health disorders. This review therefore provides valuable insights into the use of VR technology in training and education for mental health care. Another strength of this review is the comprehensive search strategy developed by a senior academic librarian at Inland Norway University of Applied Sciences (HINN) and the authors in collaboration with an adviser from KildeGruppen AS (a Norwegian media company). The search strategy was peer-reviewed by an academic librarian at HINN. Advisers from VRINN (an immersive learning cluster in Norway) and SIMInnlandet (a center for simulation in mental health care at Innlandet Hospital Trust) provided assistance in reviewing the VR systems of the studies, while the classification of the learning designs was conducted under the guidance of a VP scholar. This systematic review relies on an established and recognized classification of VR interventions for training health care personnel and may enhance understanding of the effectiveness of VR interventions designed for the training of mental health care personnel.

This review has some limitations. As we aimed to measure the effect of the VR intervention alone and not the effect of a blended training design, the selection of included studies was limited. Studies not covered in this review might have offered different insights. Given the understanding that blended learning designs, where technology is combined with other forms of learning, have significant positive effects on learning outcomes [ 44 ], we were unable to evaluate interventions that may be more effective in clinical settings. Further, by limiting the outcomes to knowledge, skills, and attitudes, we might have missed insights into other outcomes that are pivotal to competence acquisition.

Limitations in many of the included studies necessitate cautious interpretation of the review’s findings. Small sample sizes and weak designs in several studies, coupled with the use of non-validated outcome measures in some studies, diminish the robustness of the findings. Furthermore, the risk of bias assessment in this review indicates a predominantly high or serious risk of bias across most of the studies, regardless of their design. In addition, the heterogeneity of the studies in terms of study design, interventions, and outcome measures prevented us from conducting a meta-analysis.

Further research

Future research on the effectiveness of VR training for specific learning outcomes in assessing and treating mental health disorders should encompass more rigorous experimental studies with larger sample sizes. These studies should include verifiable descriptions of the VR interventions and employ validated tools to measure outcomes. Moreover, considering that much professional learning involves interactive and reflective practice, research on VR training would probably be enhanced by developing more in-depth study designs that evaluate not only the immediate learning outcomes of VR training but also the broader learning processes associated with it. Future research should also concentrate on utilizing immersive VR training applications, while additionally exploring the integration of large language models to augment interactive learning in mental health care. Finally, this review underscores the necessity in health education research involving VR to communicate research findings using agreed terms and classifications, with the aim of providing a clearer and more comprehensive understanding of the research.

This systematic review investigated the effect of VR training interventions on knowledge, skills, and attitudes in the assessment and treatment of mental health disorders. The results suggest that VR training interventions can promote knowledge and skills acquisition. Further studies are needed to evaluate VR training interventions as a learning tool for mental health care providers. This review emphasizes the necessity to improve future study designs. Additionally, intervention studies of immersive VR applications are lacking in current research and should be a future area of focus.

Availability of data and materials

Detailed search strategies from each database is available in the DataverseNO repository, https://doi.org/10.18710/TI1E0O .

Abbreviations

Virtual Reality

Cave Automatic Virtual Environment

Randomized Controlled Trial

Non-Randomized study

Virtual Standardized Patient

Interactive Patient Scenario

Virtual Patient

Post Traumatic Stress Disorder

Standardized Patient

Artificial intelligence

Inland Norway University of Applied Sciences

Doctor of Philosophy

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Acknowledgements

The authors thank Mole Meyer, adviser at SIMInnlandet, Innlandet Hospital Trust, and Keith Mellingen, manager at VRINN, for their assistance with the categorization and classification of VR interventions, and Associate Professor Inga Hege at the Paracelcus Medical University in Salzburg for valuable contributions to the final classification of the interventions. The authors would also like to thank Håvard Røste from the media company KildeGruppen AS, for assistance with the search strategy; Academic Librarian Elin Opheim at the Inland Norway University of Applied Sciences for valuable peer review of the search strategy; and the Library at the Inland Norway University of Applied Sciences for their support. Additionally, we acknowledge the assistance provided by OpenAI’s ChatGPT for support with translations and language refinement.

Open access funding provided by Inland Norway University Of Applied Sciences The study forms a part of a collaborative PhD project funded by South-Eastern Norway Regional Health Authority through Innlandet Hospital Trust and the Inland University of Applied Sciences.

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Mental Health Department, Innlandet Hospital Trust, P.B 104, Brumunddal, 2381, Norway

Cathrine W. Steen & Kerstin Söderström

Inland Norway University of Applied Sciences, P.B. 400, Elverum, 2418, Norway

Cathrine W. Steen, Kerstin Söderström & Inger Beate Nylund

Norwegian National Advisory Unit On Concurrent Substance Abuse and Mental Health Disorders, Innlandet Hospital Trust, P.B 104, Brumunddal, 2381, Norway

Bjørn Stensrud

Akershus University Hospital, P.B 1000, Lørenskog, 1478, Norway

Johan Siqveland

National Centre for Suicide Research and Prevention, Oslo, 0372, Norway

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CWS, KS, BS, and JS collaboratively designed the study. CWS and JS collected and analysed the data and were primarily responsible for writing the manuscript text. All authors contributed to the development of the search strategy. IBN conducted the literature searches and authored the chapter on the search strategy in the manuscript. All authors reviewed, gave feedback, and granted their final approval of the manuscript.

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Correspondence to Cathrine W. Steen .

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Additional file 1: table 2..

Effects of VR training in the included studies: Randomized controlled trials (RCTs) and non-randomized studies (NRSs).

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Steen, C.W., Söderström, K., Stensrud, B. et al. The effectiveness of virtual reality training on knowledge, skills and attitudes of health care professionals and students in assessing and treating mental health disorders: a systematic review. BMC Med Educ 24 , 480 (2024). https://doi.org/10.1186/s12909-024-05423-0

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Received : 19 January 2024

Accepted : 12 April 2024

Published : 01 May 2024

DOI : https://doi.org/10.1186/s12909-024-05423-0

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