literature review on electronic health care

• Research article
• Open access
• Published: 04 September 2014

Implementing electronic health records in hospitals: a systematic literature review

• Albert Boonstra 1 ,
• Arie Versluis 2 &
• Janita F J Vos 1  

BMC Health Services Research volume  14 , Article number:  370 ( 2014 ) Cite this article

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The literature on implementing Electronic Health Records (EHR) in hospitals is very diverse. The objective of this study is to create an overview of the existing literature on EHR implementation in hospitals and to identify generally applicable findings and lessons for implementers.

A systematic literature review of empirical research on EHR implementation was conducted. Databases used included Web of Knowledge, EBSCO, and Cochrane Library. Relevant references in the selected articles were also analyzed. Search terms included Electronic Health Record (and synonyms), implementation, and hospital (and synonyms). Articles had to meet the following requirements: (1) written in English, (2) full text available online, (3) based on primary empirical data, (4) focused on hospital-wide EHR implementation, and (5) satisfying established quality criteria.

Of the 364 initially identified articles, this study analyzes the 21 articles that met the requirements. From these articles, 19 interventions were identified that are generally applicable and these were placed in a framework consisting of the following three interacting dimensions: (1) EHR context, (2) EHR content, and (3) EHR implementation process.

Conclusions

Although EHR systems are anticipated as having positive effects on the performance of hospitals, their implementation is a complex undertaking. This systematic review reveals reasons for this complexity and presents a framework of 19 interventions that can help overcome typical problems in EHR implementation. This framework can function as a reference for implementers in developing effective EHR implementation strategies for hospitals.

Peer Review reports

In recent years, Electronic Health Records (EHRs) have been implemented by an ever increasing number of hospitals around the world. There have, for example, been initiatives, often driven by government regulations or financial stimulations, in the USA [ 1 ], the United Kingdom [ 2 ] and Denmark [ 3 ]. EHR implementation initiatives tend to be driven by the promise of enhanced integration and availability of patient data [ 4 ], by the need to improve efficiency and cost-effectiveness [ 5 ], by a changing doctor-patient relationship toward one where care is shared by a team of health care professionals [ 5 ], and/or by the need to deal with a more complex and rapidly changing environment [ 6 ].

EHR systems have various forms, and the term can relate to a broad range of electronic information systems used in health care. EHR systems can be used in individual organizations, as interoperating systems in affiliated health care units, on a regional level, or nationwide [ 1 , 2 ]. Health care units that use EHRs include hospitals, pharmacies, general practitioner surgeries, and other health care providers [ 7 ].

The implementation of hospital-wide EHR systems is a complex matter involving a range of organizational and technical factors including human skills, organizational structure, culture, technical infrastructure, financial resources, and coordination [ 8 , 9 ]. As Grimson et al. [ 5 ] argue, implementing information systems (IS) in hospitals is more challenging than elsewhere because of the complexity of medical data, data entry problems, security and confidentiality concerns, and a general lack of awareness of the benefits of Information Technology (IT). Boonstra and Govers [ 10 ] provide three reasons why hospitals differ from many other industries, and these differences might also affect EHR implementations. The first reason is that hospitals have multiple objectives, such as curing and caring for patients, and educating new physicians and nurses. Second, hospitals have complicated and highly varied structures and processes. Third, hospitals have a varied workforce including medical professionals who possess high levels of expertise, power, and autonomy. These distinct characteristics justify a study that focuses on the identification and analysis of the findings of previous studies on EHR implementation in hospitals.

Study aim, theoretical framework, and terminology

In dealing with the complexity of EHR implementation in hospitals, it is helpful to know which factors are seen as important in the literature and to capture the existing knowledge on EHR implementation in hospitals. As such, the objective of this research is to identify, categorize, and analyze the existing findings in the literature on EHR implementation processes in hospitals. This could contribute to greater insight into the underlying patterns and complex relationships involved in EHR implementation and could identify ways to tackle EHR implementation problems. In other words, this study focusses on the identification of factors that determine the progress of EHR implementation in hospitals. The motives behind implementing EHRs in hospitals and the effects on performance of implemented EHR systems are beyond the scope of this paper.

To our knowledge, there have been no systematic reviews of the literature concerning EHR implementation in hospitals and this article therefore fills that gap. Two interesting related review studies on EHR implementation are Keshavjee et al. [ 11 ] and McGinn et al. [ 12 ]. The study of Keshavjee et al. [ 11 ] develops a literature based integrative framework for EHR implementation. McGinn et al. [ 12 ] adopt an exclusive user perspective on EHR and their study is limited to Canada and countries with comparable socio-economic levels. Both studies are not explicitly focused on hospitals and include other contexts such as small clinics and national or regional EHR initiatives.

This systematic review is explicitly focused on hospital-wide, single hospital EHR implementations and identifies empirical studies (that include collected primary data) that reflect this situation. The categorization of the findings from the selected articles draws on Pettigrew’s framework for understanding strategic change [ 13 ]. This model has been widely applied in case study research into organizational contexts [ 14 ], as well as in studies on the implementation of health care innovations [ 15 ]. It generates insights by analyzing three interactive dimensions – context , content , and process – that together shape organizational change. Pettigrew’s framework [ 13 ] is seen as applicable because implementing an EHR artefact is an organization-wide effort. This framework was specifically selected for its focus on organizational change, its ease of understanding, and its relatively general dimensions allowing a broad range of findings to be included. The framework structures and focusses the analysis of the findings from the selected articles.

An organization’s context can be divided into internal and external components. External context refers to the social, economic, political, and competitive environments in which an organization operates. The internal context refers to the structure, culture, resources, capabilities, and politics of an organization. The content covers the specific areas of the transformation under examination. In an EHR implementation, these are the EHR system itself (both hardware and software), the work processes, and everything related to these (e.g. social conditions). The process dimension concerns the processes of change, made up of the plans, actions, reactions, and interactions of the stakeholders, rather than work processes in general. It is important to note that Pettigrew [ 13 ] does not see strategic change as a rational analytical process but rather as an iterative, continuous, multilevel process. This highlights that the outcome of an organizational change will be determined by the context, content, and process of that change. The framework with its three categories, shown in Figure  1 , illustrates the conceptual model used to categorize the findings of this systematic literature review.

Pettigrew ’ s framework [ 13 ] ] and the corresponding categories.

In the literature, several terms are used to refer to electronic medical information systems. In this article, the term Electronic Health Record (EHR) is used throughout. Commonly used terms identified by ISO (the International Organization for Standardization) [ 16 ] plus another not identified by ISO are outlined below and used in our search. ISO considers Electronic Health Record (EHR) to be an overall term for “ a repository of information regarding the health status of a subject of care , in computer processable form ” [ 16 ], p. 13. ISO uses different terms to describe various types of EHRs. These include Electronic Medical Record (EMR), which is similar to an EHR but restricted to the medical domain. The terms Electronic Patient Record (EPR) and Computerized Patient Record (CPR) are also identified. Häyrinen et al. [ 17 ] view both terms as having the same meaning and referring to a system that contains clinical information from a particular hospital. Another term seen is Electronic Healthcare Record (EHCR) which refers to a system that contains all the available health information on a patient [ 17 ] and can thus be seen as synonymous with EHR [ 16 ]. A term often found in the literature is Computerized Physician Order Entry (CPOE). Although this term is not mentioned by ISO [ 16 ] or by Häyrinen et al. [ 17 ], we included CPOE for three reasons. First, it is considered by many to be a key hospital-wide function of an EHR system e.g. [ 8 , 18 ]. Second, from a preliminary analysis of our initial results, we found that, from the perspective of the implementation process, comparable issues and factors emerged from both CPOEs and EHRs. Third, the implementation of a comprehensive electronic medical record requires physicians to make direct order entries [ 19 ]. Kaushal et al. define a CPOE as “ a variety of computer - based systems that share the common features of automating the medication ordering process and that ensure standardized , legible , and complete orders ” [ 18 ], p. 1410. Other terms found in the literature were not included in this review as they were considered either irrelevant or too broadly defined. Examples of such terms are Electronic Client Record (ECR), Personal Health Record (PHR), Digital Medical Record (DMR), Health Information Technology (HIT), and Clinical Information System (CIS).

Search strategies

In order for a systematic literature review to be comprehensive, it is essential that all terms relevant to the aim of the research are covered in the search. Further, we need to include relevant synonyms and related terms, both for electronic medical information systems and for hospitals. By adding an * to the end of a term, the search engines pick out other forms, and by adding “ “ around words one ensures that only the complete term is searched for. Further, by including a ? as a wildcard character, every possible combination is included in the search.

The search used three categories of keywords. The first category included the following terms as approximate synonyms for hospital: “hospital*”, “healthcare”, and “clinic*”. The second category concerned implementation and included the term “implement*”. For the third category, electronic medical information systems, the following search terms were used: “Electronic Health Record*”, “Electronic Patient Record*”, “Electronic Medical Record*”, “Computeri?ed Patient Record*”, “Electronic Healthcare Record*”, “Computeri?ed Physician Order Entry”.

This relatively large set of keywords was necessary to ensure that articles were not missed in the search, and required a large number of search strategies to cover all those keywords. As we were seeking papers about the implementation of electronic medical information systems in hospitals , the search strategies included the terms shown in Table  1 .

The following three search engines were chosen based on their relevance to the field and their accessibility by the researcher: Web of knowledge, EBSCO, and The Cochrane Library. Most search engines use several databases but not all of them were relevant for this research as they serve a wide range of fields. Appendix A provides an overview of the databases used. The reference lists included in articles that met the selection criteria were checked for other possibly relevant studies that had not been identified in the database search.

The articles identified from the various search strategies had to be academic peer-reviewed articles if they were to be included in our review. Further, they were assessed and had to satisfy the following criteria to be included: (1) written in English, (2) full text available online, (3) based on primary empirical data, (4) focused on hospital-wide EHR implementation, and (5) meeting established quality criteria. A long list of abstracts was generated, and all of them were independently reviewed by two of the authors. They independently reviewed the abstracts, eliminated duplicates and shortlisted abstracts for detailed review. When opinions differed, a final decision over inclusion was made following a discussion between the researchers.

Data analysis

The quality of the articles that survived this filtering was assessed by the first two authors using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers [ 18 ]. In other words, the quality of the articles was jointly assessed by evaluating whether specific criteria had been addressed, resulting in a rating of 2 (fully addressed), 1 (partly addressed), or 0 (not addressed) for each criteria. Different questions are posed for qualitative and quantitative research and, in the event of a mixed-method study, both questionnaires were used. Papers were included if they received at least half of the total possible points, admittedly a relatively liberal cut-off point given comments in the Standard Quality Assessment Criteria for Evaluating Primary Research Papers [ 20 ].

The next step was to extract the findings of the reviewed articles and to analyze these with the aim of reaching general findings on the implementation of EHR systems in hospitals. Categorizing these general findings can increase clarity. The earlier introduced conceptual model, based on Pettigrew’s framework for understanding strategic change, includes three categories: context (A), content (B), and process (C). As our review is specifically aimed at identifying findings related to the implementation process, possible motives for introducing such a system, as well as its effects and outcomes, are outside its scope. The authors held frequent discussions between themselves to discuss the meaning and the categorization of the general findings.

Paper selection

Applying the 18 search strategies listed in Table  1 with the various search engines resulted in 364 articles being identified. The searches were carried out on 12 March 2013 for search strategies 1–15 and on 18 April 2013 for search strategies 16–18. The latter three strategies were added following a preliminary analysis of the first set of results which highlighted several other terms and descriptions for information technology in health care. Not surprisingly, many duplicates were included in the 364 articles, both within and between search engines. Using the Refworks functions for identifying exact and close duplicates, 160 duplicates were found. However, this procedure did not identify all the duplicates present and the second author carried out a manual check that identified an additional 23 duplicates. When removing duplicates, we retained the link to the first search engine that identified the article and, as the Web of Knowledge was the first search engine used, most articles appear to have stemmed from this search engine. This left 181 different articles which were screened on title and abstract to check whether they met the selection criteria. When this was uncertain, the contents of the paper were further investigated. This screening resulted in just 13 articles that met all the selection criteria. We then performed two additional checks for completeness. First, checking the references of these articles identified another nine articles. Second, as suggested by the referees of this paper, we also used the term “introduc*” instead of “implement*”, together with the other two original categories of terms, and the term “provider” instead of “physician”, as part of CPOE. Each of these two searches identified one additional article (see Table  1 ). Of these resulting 24 articles, two proved to be almost identical so one was excluded, resulting in 23 articles for a final quality assessment.The results of the quality assessment can be found in Appendix B. The results show that two articles failed to meet the quality threshold and so 21 articles remained for in-depth analysis. Figure  2 displays the steps taken in this selection procedure.

Selection procedure.

To provide greater insight into the context and nature of the 21 remaining articles, an overview is provided in Table  2 . All the studies except one were published after 2000. This reflects the recent increase in effort to implement organization-wide information systems, such as EHR systems, and also increasing incentives from governments to make use of EHR systems in hospitals. Of the 21 studies, 14 can be classified as qualitative, 6 as quantitative, and 1 as a mixed-method study. Most studies were conducted in the USA, with eight in various European countries. Teaching and non-teaching hospitals are almost equally the subject of inquiry, and some researchers have focused on specific types of hospitals such as rural, critical access, or psychiatric hospitals. Ten of the articles were in journals with a five-year impact factor in the Journal Citation Reports 2011 database. There is a huge difference in the number of citations but one should never forget that newer studies have had fewer opportunities to be cited.

Theoretical perspectives of reviewed articles

In research, it is common to use theoretical frameworks when designing an academic study [ 41 ]. Theoretical frameworks provide a way of thinking about and looking at the subject matter and describe the underlying assumptions about the nature of the subject matter [ 42 ]. By building on existing theories, research becomes focused in aiming to enrich and extend the existing knowledge in that particular field [ 42 ]. To provide a more thorough understanding of the selected articles, their theoretical frameworks, if present, are outlined in Table  3 .

It is striking that no specific theoretical frameworks have been used in the research leading to 13 of the 21 selected articles. Most articles simply state their objective as gaining insight into certain aspects of EHR implementation (as shown in Table  1 ) and do not use a particular theoretical approach to identify and categorize findings. As such, these articles add knowledge to the field of EHR implementation but do not attempt to extend existing theories.

Aarts et al. [ 21 ] introduce the notion of the sociotechnical approach: emphasizing the importance of focusing both on the social aspects of an EHR implementation and on the technical aspects of the system. Using the concept of emergent change, they argue that an implementation process is far from linear and predictable due to the contingencies and the organizational complexity that influences the process. A sociotechnical approach and the concept of emergent change are also included in the theoretical framework of Takian et al. [ 37 ]. Aarts et al. [ 21 ] elaborate on the sociotechnical approach when stating that the fit between work processes and the information technology determines the success of the implementation. Aarts and Berg [ 22 ] introduce a model of success or failure in information system implementation. They see creating synergy among the medical work practices, the information system, and the hospital organization as necessary for implementation, and argue that this will only happen if sufficient people accept a change in work practices. Cresswell et al.’s study [ 26 ] is also influenced by sociotechnical principles and draws on Actor-Network Theory. Gastaldi et al. [ 28 ] perceive Electronic Health Records as knowledge management systems and question how such systems can be used to develop knowledge assets. Katsma et al. [ 31 ] focus on implementation success and elaborate on the notion that implementation success is determined by system quality and acceptance through participation. As such, they adopt more of a social view on implementation success rather than a sociotechnical approach. Rivard et al. [ 34 ] examine the difficulties in EHR implementation from a cultural perspective. They not only view culture as a set of assumptions shared by an entire collective (an integration perspective) but also expect subcultures to exist (a differentiation perspective), as well as individual assumptions not shared by a specific (sub-) group (fragmentation perspective). Ford et al. [ 27 ] focus on an entirely different topic and investigate the IT adoption strategies of hospitals using a framework that identifies three strategies. These are the single-vendor strategy (in which all IT is purchased from a single vendor), the best-of-breed strategy (integrating IT from multiple vendors), and the best-of-suit strategy (a hybrid approach using a focal system from one vendor as the basis plus other applications from other vendors).

To summarize, the articles by Aarts et al. [ 21 ], Aarts and Berg [ 22 ], Cresswell et al. [ 26 ], and Takian et al. [ 37 ] apply a sociotechnical framework to focus their research. Gastaldi et al. [ 28 ] see EHRs as a means to renew organizational capabilities. Katsma et al. [ 31 ] use a social framework by focusing on the relevance of an IT system as perceived by the user and the participation of users in the implementation process. Rivard et al. [ 34 ] analyze how organizational cultures can be receptive to EHR implementation. Ford et al. [ 27 ] look at adoption strategies, leading them to focus on the selection procedure for Electronic Health Records. The 13 other studies did not use an explicit theoretical lens in their research.

Implementation-related findings

The process of categorization started by assessing whether a specific finding from a study should be placed in Category A, B, or C. Thirty findings were placed in Category A (context), 31 in Category B (content), and 66 in Category C (process). Comparing and combining the specific findings resulted in several general findings within each category. The general findings are each given a code (category character plus number) and the related code is indicated alongside each specific finding in Appendix C. Findings that were only seen in one article, and thus were lacking support, were discarded.

Category A - context

The context category of an EHR implementation process includes both internal variables (such as resources, capabilities, culture, and politics) and external variables (such as economic, political, and social variables). Six general findings were identified, all but one related to internal variables. An overview of the findings and corresponding articles can be found in Table  4 . The lack of general findings related to external variables reflects our decision to exclude the underlying reasons (e.g. political or social pressures) for implementing an EHR system from this review. Similarly, internal findings related to aspects such as perceived financial benefits or improved quality of care, are outside our scope.

A1: Large (or system-affiliated), urban, not-for-profit, and teaching hospitals are more likely to have implemented an EHR system due to having greater financial capabilities, a greater change readiness, and less focus on profit

The research reviewed shows that larger or system-affiliated hospitals are more likely to have implemented an EHR system, and that this can be explained by their easier access to the large financial resources required. Larger hospitals have more financial resources than smaller hospitals [ 30 ] and system-affiliated hospitals can share costs [ 27 ]. Hospitals situated in urban areas more often have an EHR system than rural hospitals, which is attributed to less knowledge of EHR systems and less support from medical staff in rural hospitals [ 29 ]. The fact that not-for-profit hospitals more often have an EHR system fully implemented and teaching hospitals slightly more often than private hospitals is attributed to the latter’s more wait-and-see approach and the more progressive change-ready nature of public and teaching hospitals [ 27 , 32 ].

A2: EHR implementation requires the selection of a mature vendor who is committed to providing a system that fits the hospital’s specific needs

Although this finding is not a great surprise, it is relevant to discuss it further. A hospital selecting its own vendor can ensure that the system will match the specific needs of that hospital [ 32 ]. Further, it is important to deal with a vendor that has proven itself on the EHR market with mature and successful products. The vendor must also be able to identify hospital workflows and adapt its product accordingly, and be committed to a long-term trusting relationship with the hospital [ 33 ]. With this in mind, the initial price of the system should not be the overriding consideration: the organization should be willing to avoid purely cost-oriented vendors [ 28 ], as costs soon mount if problems arise.

A3: The presence of hospital staff with previous experience of health information technology increases the likelihood of EHR implementation as less uncertainty is experienced by the end-users

In order to be able to work with an EHR system, users must be capable of using information technology such as computers and have adequate typing skills [ 19 , 32 ]. Knowledge of, and previous experience with, EHR systems or other medical information systems reduces uncertainty and disturbance for users, and this results in a more positive attitude towards the system [ 29 , 32 , 37 , 38 ].

A4: An organizational culture that supports collaboration and teamwork fosters EHR implementation success because trust between employees is higher

The influence of organizational culture on the success of organizational change is addressed in almost all the popular approaches to change management, as well as in several of the articles in this literature review. Ash et al. [ 23 , 24 ] and Scott et al. [ 35 ] highlight that a strong culture with a history of collaboration, teamwork, and trust between different stakeholder groups minimizes resistance to change. Boyer et al. [ 25 ] suggest creating a favorable culture that is more adaptive to EHR implementation. However, creating a favorable culture is not necessarily easy: a comprehensive approach including incentives, resource allocation, and a responsible team was used in the example of Boyer et al. [ 25 ].

A5: EHR implementation is most likely in an organization with little bureaucracy and considerable flexibility as changes can be rapidly made

A highly bureaucratic organizational structure hampers change: it slows the process and often leads to inter-departmental conflict [ 19 ]. Specifically, appointing a multidisciplinary team to deal with EHR-related issues can prevent conflict and stimulate collaboration [ 25 ].

A6: EHR system implementation is difficult because cure and care activities must be ensured at all times

During the process of implementing an EHR system, it is of the utmost importance that all relevant information is always available [ 28 , 34 , 39 ]. Ensuring the continuity of quality care while implementing an EHR system is difficult and is an important distinction from many other IT implementations.

Category B - content

The content of the EHR implementation process consists of the EHR system and the corresponding objectives, assumptions, and complementary services. Table  5 lists the five extracted general findings. These focus on both the hardware and software of the EHR system, and its relation to work practices and privacy.

B1: Creating a fit by adapting both the technology and work practices is a key factor in the implementation of EHR

This finding elaborates on the sociotechnical approach identified in the earlier section on the theories adopted in the articles. Several authors [ 21 , 26 , 31 , 37 ] make clear that creating a fit between the EHR system and the existing work practices requires an initial acknowledgement that an EHR implementation is not just a technical project and that existing work practices will change due to the new system. By customizing and adapting the system to meet specific needs, users will become more open to using it [ 19 , 26 , 28 ].

B2: Hardware availability and system reliability, in terms of speed, availability, and a lack of failures, are necessary to ensure EHR use

In several articles, authors highlight the importance of having sufficient hardware. A system can only be used if it is available to the users, and a system will only be used if it works without problems. Ash et al. [ 24 ], Scott et al. [ 35 ], and Weir et al. [ 19 ] refer to the speed of the system as well as to the availability of a sufficient number of adequate terminals see also [ 40 ] in various locations. Systems must be logically structured [ 29 ], reliable [ 32 ], and provide safe information access [ 37 ]. Boyer et al. [ 25 ] also mention the importance of technical aspects but add that these are not sufficient for EHR implementation.

B3: To ensure EHR implementation, the software needs to be user-friendly with regard to ease of use, efficiency in use, and functionality

Some authors distinguish between technical availability and reliability, and the user-friendliness of the software [ 19 , 24 , 32 ]. They argue that it is not sufficient for a system to be available and reliable, it should also be easy and efficient in use, and provide the functionality required for medical staff to give good care. If a system fails to do this, staff will not use the system and will stick to their old ways of working.

B4: An EHR implementation should contain adequate safeguards for patient privacy and confidentiality

Concerns over privacy and confidentiality are recognized by Boyer et al. [ 25 ] and Houser and Johnson [ 29 ] and are considered as a barrier to EHR implementation. Yoon-Flannery et al. [ 40 ] and Takian et al. [ 37 ] also recognize the importance of patient privacy and the need to address this issue by providing training and creating adequate safeguards.

B5: EHR implementation requires a vendor who is willing to adapt its product to hospital work processes

A vendor must be responsive and enable the hospital to develop its product to ensure a good and usable EHR system [ 32 , 33 ]. By so doing, dependence on the vendor decreases and concerns that arise within the hospital can be addressed [ 32 ]. This finding is related to A2 in the sense that an experienced, cooperative, and flexible vendor is needed to deal with the range of interest groups found in hospitals.

Category C - process

This category refers to the actual process of implementing the EHR system. Variables considered are time, change approach, and change management. In our review, this category produced the largest number of general findings (see Table  6 ), as might be expected given our focus on the implementation process. EHR implementation often leads to anxiety, uncertainty, and concerns about a possible negative impact of the EHR on work processes and quality. The process findings, including leadership, resource availability, communication and participation are explicitly aimed at overcoming resistance to EHR implementation. These interventions help to create a positive atmosphere of goal directedness, co-creation and partnership.

C1: Due to their influential position, management’s active involvement and support is positively associated with EHR implementation, and also counterbalances the physicians’ medical dominance

Several authors note the important role that managers play in EHR implementation. Whereas some authors refer to supportive leadership [ 19 , 24 ], others emphasize that strong and active management involvement is needed [ 25 , 32 – 35 ]. Strong leadership is relevant as it effectively counterbalances the physicians’ medical dominance. For instance, Rivard et al. [ 34 ] observe that physicians’ medical dominance and the status and autonomy of other health professionals hinder collaboration and teamwork, and that this complicates EHR implementation. Poon et al. [ 33 ] acknowledge this aspect and argue for strong leadership in order to deal with the otherwise dominant physicians. They also claim that leaders have to set an example and use the system themselves. At the same time, it is motivating that the implementation is managed by leaders who are recognized by the medical staff, for instance by head nurses and physicians or by former physicians and nurses [ 25 , 33 ]. Ovretveit et al. [ 32 ] argue that it helps the implementation if senior management repeatedly declares the EHR implementation to be of the highest priority and supports this with sufficient financial and human resources. Poon et al. [ 33 ] add to this by highlighting that, especially during uncertainties and setbacks, the common vision that guides the EHR implementation has to be communicated to hospital staff. Sufficient human resources include the selection of competent and experienced project leaders who are familiar with EHR implementation. Scott et al. [ 35 ] identify leadership styles for different phases: participatory leadership is valued in selection decisions, whereas a more hierarchical leadership style is preferable in the actual implementation.

C2: Participation of clinical staff in the implementation process increases support for and acceptance of the EHR implementation

Participation of end-users (the clinical staff) generates commitment and enables problems to be quickly solved [ 25 , 26 , 36 ]. Especially because it is very unlikely that the system will be perfect for all, it is important that the clinical staff become the owner, rather than customers, of the system. Clinical staff should participate at all levels and in all steps [ 19 , 28 , 32 , 36 ] from initial system selection onwards [ 35 ]. Ovretveit et al. [ 32 ] propose that this involvement should have an extensive timeframe, starting in the early stages of implementation, when initial vendor requirements are formulated (‘consultation before implementation’), through to the beginning of the use phase. Creating multidisciplinary work groups which determine the content of the EHR and the rules regarding the sharing of information contributes to EHR acceptance [ 25 ] and ensures realistic approaches acceptable to the clinical staff [ 36 ].

C3: Training end-users and providing real-time support is important for EHR implementation success

Frequently, the end-users of a new EHR system lack experience with the specific EHR system or with EHR systems in general. Although it is increasingly hard to imagine society or workplaces without IT, a large specific system, such as an EHR, still requires considerable training on how to use it properly. The importance of training is often underestimated, and inadequate training will create a barrier to EHR use [ 19 , 29 ]. Consequently, adequate training, of appropriate quantity and quality, must be provided at the right times and locations [ 19 , 32 , 36 ]. Simon et al. [ 36 ] add to this the importance of real-time support, preferably provided by peers and super-users.

C4: A comprehensive implementation strategy, offering both clear guidance and room for emergent change, is needed for implementing an EHR system

Several articles highlight aspects of an EHR implementation strategy. A good strategy facilitates EHR implementation [ 19 , 25 ] and consists of careful planning and preparation [ 36 ], a sustainable business plan, effective communication [ 28 , 40 ] and mandatory implementation [ 19 ]. Emergent change is perceived as a key characteristic of EHR implementation in complex organizations such as hospitals [ 21 ], and this suggests an implementation approach based on a development paradigm [ 31 ], which may initially even involve parallel use of paper [ 26 ]. The notion of emergent change has been variously applied, including in the theoretical frameworks of Aarts et al. [ 21 ] and Katsma et al. [ 31 ]. These studies recognize that EHR implementation is relatively unpredictable due to unforeseen contingencies for which one cannot plan. With their emphasis on emergent change with unpredictable outcomes, Aarts et al. [ 21 ] make a case for acknowledging that unexpected and unplanned contingencies will influence the implementation process. They argue that the changes resulting from these contingencies often manifest themselves unexpectedly and must then be dealt with. Additionally, Takian et al. [ 37 ] state that it is crucial to contextualize an EHR implementation so as to be better prepared for unexpected changes.

C5: Establishing an interdisciplinary implementation group consisting of developers, members of the IT department, and end-users fosters EHR implementation success

In line with the arguments for management support and for the participation of clinical staff, Ovretveit et al. [ 32 ], Simon et al. [ 36 ] and Weir et al. [ 19 ] build a case for using an interdisciplinary implementation group. By having all the direct stakeholders working together, a better EHR system can be delivered faster and with fewer problems.

C6: Resistance of clinical staff, in particular of physicians, is a major barrier to EHR implementation, but can be reduced by addressing their concerns

Clinical staff’s attitude is a crucial factor in EHR implementation [ 36 ]. Particularly, the physicians constitute an important group in hospitals. As such, their possible resistance to EHR implementation will form a major barrier [ 29 , 33 ] and may lead to workarounds [ 26 ]. Whether physicians accept or reject an EHR implementation depends on their acceptance of their work practices being transformed [ 22 ]. The likelihood of acceptance will be increased if implementers address the concerns of physicians [ 24 , 28 , 32 , 33 ], but also of other members of clinical staff [ 36 ].

C7: Identifying champions among clinical staff reduces resistance

The previous finding already elaborated on clinical staff resistance and suggested reducing this by addressing their concerns. Another way to reduce their resistance is related to the process of implementation and involves identifying physician champions, typically physicians that are well respected due to their knowledge and contacts [ 32 , 33 ]. Simon et al. [ 36 ] emphasize the importance of identifying champions among each stakeholder group. These champions can provide reassurance to their peers.

C8: Assigning a sufficient number of staff and other resources to the EHR implementation process is important in adequately implementing the system

Implementing a large EHR system requires considerable resources, including human ones. Assigning appropriate people, such as super-users [ 36 ] and a sufficient number of them to that process will increase the likelihood of success [ 19 , 32 , 33 , 36 ]. Further, it is important to have sufficient time and financial resources [ 26 , 32 ]. This finding is also relevant in relation to finding A6 (ensuring good care during organizational change).

These 19 general findings have been identified from the individual findings within the 20 analyzed articles. These findings are all related to one of the three main and interacting dimensions of the framework: six to context, five to content, and eight to process. This identification and explanation of the general findings concludes the results section of this systematic literature review and forms the basis for the discussion below.

This review of the existing academic literature sheds light on the current knowledge regarding EHR implementation. The 21 selected articles all originate from North America or Europe, perhaps reflecting a greater governmental attention to EHR implementation in these regions and, of course, our inclusion of only articles written in English. Two articles were rejected for quality reasons [ 43 , 44 ], see Appendix B. All but one of the selected articles have been published since 2000, reflecting the growing interest in implementing EHR systems in hospitals. Eight articles built their research on a theoretical framework, four of which use the same general lens of the sociotechnical approach [ 21 , 22 , 26 , 37 ]. Katsma et al. [ 31 ] and Rivard et al. [ 34 ] focus more on the social and cultural aspects of EHR implementation, the former on the relevance for, and participation of, users, the latter on three different cultural perspectives. Ford et al. [ 27 ] researched adoption strategies for EHR systems and Gastaldi et al. [ 26 ] consider them as a means to renew organizational capabilities. It is notable that the other reviewed articles did not use a theoretical framework to analyze EHR implementation and made no attempt to elaborate on existing theories.

A total of 127 findings were extracted from the articles, and these findings were categorized using Pettigrew’s framework for strategic change [ 13 ] as a conceptual model including the three dimensions of context, content, and process. To ensure a tight focus, the scope of the review was explicitly limited to findings related to the EHR implementation process, thus excluding the reasons for, barriers to, and outcomes of an EHR implementation.

Some of the findings require further interpretation. Contextual finding A1 relates to the demographics of a hospital. One of the assertions is that privately owned hospitals are less likely than public hospitals to invest in an EHR. The former apparently perceive the costs of EHR implementation to outweigh the benefits. This seems remarkable given that there is a general belief that information technology increases efficiency and reduces process costs, so more than compensating for the high initial investments. It is however important to note that the literature on EHR is ambivalent when it comes to efficiency; several authors record a decrease in the efficiency of work practices [ 25 , 33 , 35 , 38 ], whereas others mention an increase [ 29 , 31 ]. Finding A2 is a reminder of the importance of carefully selecting an appropriate vendor, taking into account experience with the EHR market and the maturity of their products rather than, for example, focussing on the cost price of the system. Given the huge investment costs, the price of an EHR system tends to have a major influence on vendor selection, an aspect that is also promoted by the current European tendering regulations that oblige (semi-) public institutions, like many hospitals, to select the lowest bidder, or the bidder that is economically the most preferable [ 45 ]. The finding that EHR system implementation is difficult because good medical care needs to be ensured at all times (A6) also deserves mention. Essentially, many system implementations in hospitals are different from IT implementations in other contexts because human lives are at stake in hospitals. This not only complicates the implementation process because medical work practices have to continue, it also requires a system to be reliable from the moment it is launched.

The findings regarding the content of the EHR system (Category B) highlight the importance of a suitable software product. A well-defined selection process of the software package and its associated vendor (discussed in A2) is seen as critical (B5). Selection should be based on a careful requirements analysis and an analysis of the experience and quality of the vendor. An important requirement is a sufficient degree of flexibility to customize and adapt the software to meet the needs of users and the work practices of the hospital (finding B1). At the same time the software product should challenge the hospital to rethink and improve its processes. A crucial condition for the acceptance by the diverse user groups of hospitals is the robustness of the EHR system in terms of availability, speed, reliability and flexibility (B2). This also requires adequate hardware in terms of access to computers, and mobile equipment to enable availability at all the locations of the hospital. Perceived ease of use of the system (B4) and the protection of patients’ privacy (B4) are other content factors that can make or break EHR implementation in hospitals.

The findings on the implementation process, our Category C, highlight four aspects that are commonly mentioned in change management approaches as important success factors in organizational change. The active involvement and support of management (C1), the participation of clinical staff (C2), a comprehensive implementation strategy (C4), and using an interdisciplinary implementation group (C5) correspond with three of the ten guidelines offered by Kanter et al. [ 46 ]. These three guidelines are: (1) support a strong leader role; (2) communicate, involve people, and be honest; and (3) craft an implementation plan. As the implementation of an EHR system is an organizational change process it is no surprise that these commonalities are identified in several of the analyzed articles. Three Category C findings (C2, C6, and C7) concern dealing with clinical staff given their powerful positions and potential resistance. Physicians are the most influential medical care providers, and their resistance can delay an EHR implementation [ 23 ], lead to at least some of it being dropped [ 21 , 22 , 34 ], or to it not being implemented at all [ 33 ]. Thus, there is ample evidence of the crucial importance of physicians’ acceptance of an EHR for it to be implemented. This means that clinicians and other key personnel should be highly engaged and motivated to contribute to EHR. Prompt feedback on requests, and high quality support during the implementation, and an EHR that clearly supports clinical work are key issues that contribute to a motivated clinical staff.

Analyzing and comparing the findings enables us to categorize them in terms of subject matter (see Table  7 ). By categorizing the findings in terms of subject, and by totaling the number of articles related to the individual findings on that subject, one can deduce how much attention has been given in the literature to the different topics. This analysis highlights that the involvement of physicians in the implementation process, the quality of the system, and a comprehensive implementation strategy are considered the crucial elements in EHR implementation.

Notwithstanding the useful results, this review and analysis has some limitations. Although we carefully developed and executed the search strategy, we cannot be sure that we found all the relevant articles. Since we focused narrowly on keywords, and these had to be part of an article’s title, we could have excluded relevant articles that used different terminology in their titles. Although searching the reference lists of identified articles did result in several additional articles, some relevant articles might still have been missed. Another limitation is the exclusion of publications in languages other than English. Further, the selection and categorization of specific findings, and the subsequent extraction of general findings, is subjective and depends on the interpretations of the authors, and other researchers might have made different choices. A final limitation is inherent to literature reviews in that the authors of the studies included may have had different motives and aims, and used different methods and interpretative means, in drawing their conclusions.

The existing literature fails to provide evidence of there being a comprehensive approach to implementing EHR systems in hospitals that integrates relevant aspects into an ‘EHR change approach’. The literature is diffuse, and articles seldom build on earlier ones to increase the theoretical knowledge on EHR implementation, notable exceptions being Aarts et al. [ 21 ], Aarts and Berg [ 22 ], Cresswell et al. [ 26 ], and Takian et al. [ 37 ]. The earlier discussion on the various results summarizes the existing knowledge and reveals gaps in the knowledge associated with EHR implementation. The number of EHR implementations in hospitals is growing, as well as the body of literature on this subject. This systematic review of the literature has produced 19 general findings on EHR implementation, which were each placed in one of three categories. A number of these general findings are in line with the wider literature on change management, and others relate to the specific nature of EHR implementation in hospitals.

The findings presented in this article can be viewed as an overview of important subjects that should be addressed in implementing an EHR system. It is clear that EHR systems have particular complexities and should be implemented with great care, and with attention given to context, content, and process issues and to interactions between these issues. As such, we have achieved our research goal by creating a systematic review of the literature on EHR implementation. This paper’s academic contribution is in providing an overview of the existing literature with regard to important factors in EHR implementation in hospitals. Academics interested in this specific field can now more easily access knowledge on EHR implementation in hospitals and can use this article as a starting point and build on the existing knowledge. The managerial contribution lies in the general findings that can be applied as guidelines when implementing EHR in hospitals. We have not set out to provide a single blueprint for implementing an EHR system, but rather to provide guidelines and to highlight points that deserve attention. Recognizing and addressing these aspects can increase the likelihood of getting an EHR system successfully implemented.

Appendix A - List of databases

This appendix provides an overview of all databases included in the used search engines. The databases in italic were excluded for the research as these databases focus on fields not relevant for the subject of EHR implementations.

Web of Knowledge

Web of Science

Biological Abstracts

Journal Citation Reports

Academic Search Premier

AMED - The Allied and Complementary Medicine Database

America : History & Life

American Bibliography of Slavic and East European Studies

Arctic & Antarctic Regions

Art Full Text ( H.W. Wilson )

Art Index Retrospective ( H.W. Wilson )

ATLA Religion Database with ATLASerials

Business Source Premier

Communication & Mass Media Complete

eBook Collection ( EBSCOhost )

Funk & Wagnalls New World Encyclopedia

Historical Abstracts

L ’ Annéephilologique

Library, Information Science & Technology Abstracts

MAS Ultra - School Edition

Military & Government Collection

MLA Directory of Periodicals

MLA International Bibliography

New Testament Abstracts

Old Testament Abstracts

Philosopher ’ s Index

Primary Search

PsycARTICLES

PsycCRITIQUES

Psychology and Behavioral Sciences Collection

Regional Business News

Research Starters - Business

RILM Abstracts of Music Literature

The Cochrane Library

Cochrane Database of Systematic Reviews

Cochrane Central Register of Controlled Trials

Cochrane Methodology Register

Database of Abstracts of Reviews of Effects

Health Technology Assessment Database

NHS Economic Evaluation Database

About The Cochrane Collaboration

Appendix B - Quality assessment

The quality of the articles was assessed with the Standard Quality Assessment Criteria for Evaluating Primary Research Papers [ 18 ]. Assessment was done by questioning whether particular criteria had been addressed, resulting in a rating of 2 (completely addressed), 1 (partly addressed), or 0 (not addressed) points. Table  8 provides the overview of the scores of the articles, (per question) for qualitative studies; Table  9 for quantitative studies; and Table  10 for mixed methods studies. Articles were included if they scored 50% or higher of the total amount of points possible. Based on this assessment, two articles were excluded from the search.

Appendix C - All findings

Table  11 displays all findings from the selected articles. The category number is related to the general finding as discussed in the Results section.

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We acknowledge the Master degree program Change Management at the University of Groningen for supporting this study. We also thank the referees for their valuable comments.

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AB and JV established the research design and made significant contributions to the interpretation of the results. They supervised AV throughout the study, and participated in writing the final version of this paper. AV contributed substantially to the selection and analysis of included papers, and wrote a preliminary draft of this article. All authors have read and approved the final manuscript.

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Boonstra, A., Versluis, A. & Vos, J.F.J. Implementing electronic health records in hospitals: a systematic literature review. BMC Health Serv Res 14 , 370 (2014). https://doi.org/10.1186/1472-6963-14-370

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Records Management Journal

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Article publication date: 18 May 2022

Issue publication date: 1 June 2022

Warren Buffett asserted that the greatest issue confronting American business and the economy is rising health-care costs, which have risen to 17% of gross domestic product. Public policymakers, health-care providers and other stakeholders grapple with cost-containment and increased health-care delivery efficiencies. There exists a paucity of theory-driven research addressing how information technology vis-à-vis electronic health records (EHR) may supply a managerial mechanism for increasing bottom-line hospital performance, thereby attaining competitive advantage.

Design/methodology/approach

A systematic interdisciplinary literature review motivated by resource advantage theory (RAT) offers a conceptual foundation for analyzing the financial, informational and physical workflows that are core elements of supply chain management in a hospital.

RAT links how EHR impacts profitability, competitive advantage and macromarketing factors in hospital supply chains. The literature review provides a research synthesis of the implementation and adoption of EHR to reveal its impact on a hospital’s competitive advantage. Although legislative initiatives like the 2009 Health Information Technology for Economic and Clinical Health Act and the Affordable Care Act encourage EHR adoption, there remains a reluctance for hospitals to do so.

Originality/value

The extant literature precedes the relevant legislation, has incomplete data or focuses solely on patient outcomes.

• Electronic health record (EHR)
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• Health-care policy

Malhan, A. , Manuj, I. , Pelton, L. and Pavur, R. (2022), "Electronic health records using a resource advantage theory perspective: an interdisciplinary literature review", Records Management Journal , Vol. 32 No. 2, pp. 126-150. https://doi.org/10.1108/RMJ-06-2021-0026

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Electronic health records improve the quality of care in underserved populations: a literature review

Affiliation.

• 1 Family Medicine, Georgetown University Medical Center, USA.
• PMID: 22864494
• DOI: 10.1353/hpu.2012.0134

Organizations in underserved settings are implementing or upgrading electronic health records (EHRs) in hopes of improving quality and meeting Federal goals for meaningful use of EHRs. However, much of the research that has been conducted on health information technology does not study use in underserved settings, or does not include EHRs. We conducted a structured literature search of MEDLINE to find articles supporting the contention that EHRs improve quality in underserved settings. We found 17 articles published between 2003 and 2011. These articles were mostly in urban settings, and most study types were descriptive in nature. The articles provide evidence that EHRs can improve documentation, process measures, guideline-adherence, and (to a lesser extent) outcome measures. Providers and managers believed that EHRs would improve the quality and efficiency of care. The limited quantity and quality of evidence point to a need for ongoing research in this area.

Publication types

• Electronic Health Records*
• Medically Underserved Area*
• Quality Improvement*
• United States

• Open access
• Published: 19 April 2024

Person-centered care assessment tool with a focus on quality healthcare: a systematic review of psychometric properties

• Lluna Maria Bru-Luna 1 ,
• Manuel Martí-Vilar 2 ,
• César Merino-Soto 3 ,
• José Livia-Segovia 4 ,
• Juan Garduño-Espinosa 5 &
• Filiberto Toledano-Toledano 5 , 6 , 7  

BMC Psychology volume  12 , Article number:  217 ( 2024 ) Cite this article

305 Accesses

Metrics details

The person-centered care (PCC) approach plays a fundamental role in ensuring quality healthcare. The Person-Centered Care Assessment Tool (P-CAT) is one of the shortest and simplest tools currently available for measuring PCC. The objective of this study was to conduct a systematic review of the evidence in validation studies of the P-CAT, taking the “Standards” as a frame of reference.

First, a systematic literature review was conducted following the PRISMA method. Second, a systematic descriptive literature review of validity tests was conducted following the “Standards” framework. The search strategy and information sources were obtained from the Cochrane, Web of Science (WoS), Scopus and PubMed databases. With regard to the eligibility criteria and selection process, a protocol was registered in PROSPERO (CRD42022335866), and articles had to meet criteria for inclusion in the systematic review.

A total of seven articles were included. Empirical evidence indicates that these validations offer a high number of sources related to test content, internal structure for dimensionality and internal consistency. A moderate number of sources pertain to internal structure in terms of test-retest reliability and the relationship with other variables. There is little evidence of response processes, internal structure in measurement invariance terms, and test consequences.

The various validations of the P-CAT are not framed in a structured, valid, theory-based procedural framework like the “Standards” are. This can affect clinical practice because people’s health may depend on it. The findings of this study show that validation studies continue to focus on the types of validity traditionally studied and overlook interpretation of the scores in terms of their intended use.

Peer Review reports

Person-centered care (PCC)

Quality care for people with chronic diseases, functional limitations, or both has become one of the main objectives of medical and care services. The person-centered care (PCC) approach is an essential element not only in achieving this goal but also in providing high-quality health maintenance and medical care [ 1 , 2 , 3 ]. In addition to guaranteeing human rights, PCC provides numerous benefits to both the recipient and the provider [ 4 , 5 ]. Additionally, PCC includes a set of necessary competencies for healthcare professionals to address ongoing challenges in this area [ 6 ]. PCC includes the following elements [ 7 ]: an individualized, goal-oriented care plan based on individuals’ preferences; an ongoing review of the plan and the individual’s goals; support from an interprofessional team; active coordination among all medical and care providers and support services; ongoing information exchange, education and training for providers; and quality improvement through feedback from the individual and caregivers.

There is currently a growing body of literature on the application of PCC. A good example of this is McCormack’s widely known mid-range theory [ 8 ], an internationally recognized theoretical framework for PCC and how it is operationalized in practice. This framework forms a guide for care practitioners and researchers in hospital settings. This framework is elaborated in PCC and conceived of as “an approach to practice that is established through the formation and fostering of therapeutic relationships between all care providers, service users, and others significant to them, underpinned by values of respect for persons, [the] individual right to self-determination, mutual respect, and understanding” [ 9 ].

Thus, as established by PCC, it is important to emphasize that reference to the person who is the focus of care refers not only to the recipient but also to everyone involved in a care interaction [ 10 , 11 ]. PCC ensures that professionals are trained in relevant skills and methodology since, as discussed above, carers are among the agents who have the greatest impact on the quality of life of the person in need of care [ 12 , 13 , 14 ]. Furthermore, due to the high burden of caregiving, it is essential to account for caregivers’ well-being. In this regard, studies on professional caregivers are beginning to suggest that the provision of PCC can produce multiple benefits for both the care recipient and the caregiver [ 15 ].

Despite a considerable body of literature and the frequent inclusion of the term in health policy and research [ 16 ], PCC involves several complications. There is no standard consensus on the definition of this concept [ 17 ], which includes problematic areas such as efficacy assessment [ 18 , 19 ]. In addition, the difficulty of measuring the subjectivity involved in identifying the dimensions of the CPC and the infrequent use of standardized measures are acute issues [ 20 ]. These limitations and purposes motivated the creation of the Person-Centered Care Assessment Tool (P-CAT; [ 21 ]), which emerged from the need for a brief, economical, easily applied, versatile and comprehensive assessment instrument to provide valid and reliable measures of PCC for research purposes [ 21 ].

Person-centered care assessment tool (P-CAT)

There are several instruments that can measure PCC from different perspectives (i.e., the caregiver or the care recipient) and in different contexts (e.g., hospitals and nursing homes). However, from a practical point of view, the P-CAT is one of the shortest and simplest tools and contains all the essential elements of PCC described in the literature. It was developed in Australia to measure the approach of long-term residential settings to older people with dementia, although it is increasingly used in other healthcare settings, such as oncology units [ 22 ] and psychiatric hospitals [ 23 ].

Due to the brevity and simplicity of its application, the versatility of its use in different medical and care contexts, and its potential emic characteristics (i.e., constructs that can be cross-culturally applicable with reasonable and similar structure and interpretation; [ 24 ]), the P-CAT is one of the most widely used tests by professionals to measure PCC [ 25 , 26 ]. It has expanded to several countries with cultural and linguistic differences. Since its creation, it has been adapted in countries separated by wide cultural and linguistic differences, such as Norway [ 27 ], Sweden [ 28 ], China [ 29 ], South Korea [ 30 ], Spain [ 25 ], and Italy [ 31 ].

The P-CAT comprises 13 items rated on a 5-point ordinal scale (from “strongly disagree” to “strongly agree”), with high scores indicating a high degree of person-centeredness. The scale consists of three dimensions: person-centered care (7 items), organizational support (4 items) and environmental accessibility (2 items). In the original study ( n  = 220; [ 21 ]), the internal consistency of the instrument yielded satisfactory values for the total scale ( α  = 0.84) and good test-retest reliability ( r  =.66) at one-week intervals. A reliability generalization study conducted in 2021 [ 32 ] that estimated the internal consistency of the P-CAT and analyzed possible factors that could affect the it revealed that the mean α value for the 25 meta-analysis samples (some of which were part of the validations included in this study) was 0.81, and the only variable that had a statistically significant relationship with the reliability coefficient was the mean age of the sample. With respect to internal structure validity, three factors (56% of the total variance) were obtained, and content validity was assessed by experts, literature reviews and stakeholders [ 33 ].

Although not explicitly stated, the apparent commonality between validation studies of different versions of the P-CAT may be influenced by an influential decades-old validity framework that differentiates three categories: content validity, construct validity, and criterion validity [ 34 , 35 ]. However, a reformulation of the validity of the P-CAT within a modern framework, which would provide a different definition of validity, has not been performed.

Scale validity

Traditionally, validation is a process focused on the psychometric properties of a measurement instrument [ 36 ]. In the early 20th century, with the frequent use of standardized measurement tests in education and psychology, two definitions emerged: the first defined validity as the degree to which a test measures what it intends to measure, while the second described the validity of an instrument in terms of the correlation it presents with a variable [ 35 ].

However, in the past century, validity theory has evolved, leading to the understanding that validity should be based on specific interpretations for an intended purpose. It should not be limited to empirically obtained psychometric properties but should also be supported by the theory underlying the construct measured. Thus, to speak of classical or modern validity theory suggests an evolution in the classical or modern understanding of the concept of validity. Therefore, a classical approach (called classical test theory, CTT) is specifically differentiated from a modern approach. In general, recent concepts associated with a modern view of validity are based on (a) a unitary conception of validity and (b) validity judgments based on inferences and interpretations of the scores of a measure [ 37 , 38 ]. This conceptual advance in the concept of validity led to the creation of a guiding framework to for obtaining evidence to support the use and interpretation of the scores obtained by a measure [ 39 ].

This purpose is addressed by the Standards for Educational and Psychological Testing (“Standards”), a guide created by the American Educational Research Association (AERA), the American Psychological Association (APA) and the National Council on Measurement in Education (NCME) in 2014 with the aim of providing guidelines to assess the validity of the interpretations of scores of an instrument based on their intended use. Two conceptual aspects stand out in this modern view of validity: first, validity is a unitary concept centered on the construct; second, validity is defined as “the degree to which evidence and theory support the interpretations of test scores for proposed uses of tests” [ 37 ]. Thus, the “Standards” propose several sources that serve as a reference for assessing different aspects of validity. The five sources of valid evidence are as follows [ 37 ]: test content, response processes, internal structure, relations to other variables and consequences of testing. According to AERA et al. [ 37 ], test content validity refers to the relationship of the administration process, subject matter, wording and format of test items to the construct they are intended to measure. It is measured predominantly with qualitative methods but without excluding quantitative approaches. The validity of the responses is based on analysis of the cognitive processes and interpretation of the items by respondents and is measured with qualitative methods. Internal structure validity is based on the interrelationship between the items and the construct and is measured by quantitative methods. Validity in terms of the relationship with other variables is based on comparison between the variable that the instrument intends to measure and other theoretically relevant external variables and is measured by quantitative methods. Finally, validity based on the results of the test analyses consequences, both intended and unintended, that may be due to a source of invalidity. It is measured mainly by qualitative methods.

Thus, although validity plays a fundamental role in providing a strong scientific basis for interpretations of test scores, validation studies in the health field have traditionally focused on content validity, criterion validity and construct validity and have overlooked the interpretation and use of scores [ 34 ].

“Standards” are considered a suitable validity theory-based procedural framework for reviewing the validity of questionnaires due to its ability to analyze sources of validity from both qualitative and quantitative approaches and its evidence-based method [ 35 ]. Nevertheless, due to a lack of knowledge or the lack of a systematic description protocol, very few instruments to date have been reviewed within the framework of the “Standards” [ 39 ].

Current study

Although the P-CAT is one of the most widely used instruments by professionals and has seven validations [ 25 , 27 , 28 , 29 , 30 , 31 , 40 ], no analysis has been conducted of its validity within the framework of the “Standards”. That is, empirical evidence of the validity of the P-CAT has not been obtained in a way that helps to develop a judgment based on a synthesis of the available information.

A review of this type is critical given that some methodological issues seem to have not been resolved in the P-CAT. For example, although the multidimensionality of the P-CAT was identified in the study that introduced it, Bru-Luna et al. [ 32 ] recently stated that in adaptations of the P-CAT [ 25 , 27 , 28 , 29 , 30 , 40 ], the total score is used for interpretation and multidimensionality is disregarded. Thus, the multidimensionality of the original study was apparently not replicated. Bru-Luna et al. [ 32 ] also indicated that the internal structure validity of the P-CAT is usually underreported due to a lack of sufficiently rigorous approaches to establish with certainty how its scores are calculated.

The validity of the P-CAT, specifically its internal structure, appears to be unresolved. Nevertheless, substantive research and professional practice point to this measure as relevant to assessing PCC. This perception is contestable and judgment-based and may not be sufficient to assess the validity of the P-CAT from a cumulative and synthetic angle based on preceding validation studies. An adequate assessment of validity requires a model to conceptualize validity followed by a review of previous studies of the validity of the P-CAT using this model.

Therefore, the main purpose of this study was to conduct a systematic review of the evidence provided by P-CAT validation studies while taking the “Standards” as a framework.

The present study comprises two distinct but interconnected procedures. First, a systematic literature review was conducted following the PRISMA method ( [ 41 ]; Additional file 1; Additional file 2) with the aim of collecting all validations of the P-CAT that have been developed. Second, a systematic description of the validity evidence for each of the P-CAT validations found in the systematic review was developed following the “Standards” framework [ 37 ]. The work of Hawkins et al. [ 39 ], the first study to review validity sources according to the guidelines proposed by the “Standards”, was also used as a reference. Both provided conceptual and pragmatic guidance for organizing and classifying validity evidence for the P-CAT.

The procedure conducted in the systematic review is described below, followed by the procedure for examining the validity studies.

Systematic review

Search strategy and information sources.

Initially, the Cochrane database was searched with the aim of identifying systematic reviews of the P-CAT. When no such reviews were found, subsequent preliminary searches were performed in the Web of Science (WoS), Scopus and PubMed databases. These databases play a fundamental role in recent scientific literature since they are the main sources of published articles that undergo high-quality content and editorial review processes [ 42 ]. The search formula was as follows. The original P-CAT article [ 21 ] was located, after which all articles that cited it through 2021 were identified and analyzed. This approach ensured the inclusion of all validations. No articles were excluded on the basis of language to avoid language bias [ 43 ]. Moreover, to reduce the effects of publication bias, a complementary search in Google Scholar was also performed to allow the inclusion of “gray” literature [ 44 ]. Finally, a manual search was performed through a review of the references of the included articles to identify other articles that met the search criteria but were not present in any of the aforementioned databases.

This process was conducted by one of the authors and corroborated by another using the Covidence tool [ 45 ]. A third author was consulted in case of doubt.

Eligibility criteria and selection process

The protocol was registered in PROSPERO, and the search was conducted according to these criteria. The identification code is CRD42022335866.

The articles had to meet the following criteria for inclusion in the systematic review: (a) a methodological approach to P-CAT validations, (b) an experimental or quasiexperimental studies, (c) studies with any type of sample, and (d) studies in any language. We discarded studies that met at least one of the following exclusion criteria: (a) systematic reviews or bibliometric reviews of the instrument or meta-analyses or (b) studies published after 2021.

Data collection process

After the articles were selected, the most relevant information was extracted from each article. Fundamental data were recorded in an Excel spreadsheet for each of the sections: introduction, methodology, results and discussion. Information was also recorded about the limitations mentioned in each article as well as the practical implications and suggestions for future research.

Given the aim of the study, information was collected about the sources of validity of each study, including test content (judges’ evaluation, literature review and translation), response processes, internal structure (factor analysis, design, estimator, factor extraction method, factors and items, interfactor R, internal replication, effect of the method, and factor loadings), and relationships with other variables (convergent, divergent, concurrent and predictive validity) and consequences of measurement.

Description of the validity study

To assess the validity of the studies, an Excel table was used. Information was recorded for the seven articles included in the systematic review. The data were extracted directly from the texts of the articles and included information about the authors, the year of publication, the country where each P-CAT validation was produced and each of the five standards proposed in the “Standards” [ 37 ].

The validity source related to internal structure was divided into three sections to record information about dimensionality (e.g., factor analysis, design, estimator, factor extraction method, factors and items, interfactor R, internal replication, effect of the method, and factor loadings), reliability expression (i.e., internal consistency and test-retest) and the study of factorial invariance according to the groups into which it was divided (e.g., sex, age, profession) and the level of study (i.e., metric, intercepts). This approach allowed much more information to be obtained than relying solely on source validity based on internal structure. This division was performed by the same researcher who performed the previous processes.

Study selection and study characteristics

The systematic review process was developed according to the PRISMA methodology [ 41 ].

The WoS, Scopus, PubMed and Google Scholar databases were searched on February 12, 2022 and yielded a total of 485 articles. Of these, 111 were found in WoS, 114 in Scopus, 43 in PubMed and 217 in Google Scholar. In the first phase, the title and abstracts of all the articles were read. In this first screening, 457 articles were eliminated because they did not include studies with a methodological approach to P-CAT validation and one article was excluded because it was the original P-CAT article. This resulted in a total of 27 articles, 19 of which were duplicated in different databases and, in the case of Google Scholar, within the same database. This process yielded a total of eight articles that were evaluated for eligibility by a complete reading of the text. In this step, one of the articles was excluded due to a lack of access to the full text of the study [ 31 ] (although the original manuscript was found, it was impossible to access the complete content; in addition, the authors of the manuscript were contacted, but no reply was received). Finally, a manual search was performed by reviewing the references of the seven studies, but none were considered suitable for inclusion. Thus, the review was conducted with a total of seven articles.

Of the seven studies, six were original validations in other languages. These included Norwegian [ 27 ], Swedish [ 28 ], Chinese (which has two validations [ 29 , 40 ]), Spanish [ 25 ], and Korean [ 30 ]. The study by Selan et al. [ 46 ] included a modification of the Swedish version of the P-CAT and explored the psychometric properties of both versions (i.e., the original Swedish version and the modified version).

The item selection and screening process are illustrated in detail in Fig.  1 .

PRISMA 2020 flow diagram for new systematic reviews including database searches

Validity analysis

To provide a clear overview of the validity analyses, Table  1 descriptively shows the percentages of items that provide information about the five standards proposed by the “Standards” guide [ 37 ].

The table shows a high number of validity sources related to test content and internal structure in relation to dimensionality and internal consistency, followed by a moderate number of sources for test-retest and relationship with other variables. A rate of 0% is observed for validity sources related to response processes, invariance and test consequences. Below, different sections related to each of the standards are shown, and the information is presented in more detail.

Evidence based on test content

The first standard, which focused on test content, was met for all items (100%). Translation, which refers to the equivalence of content between the original language and the target language, was met in the six articles that conducted validation in another language and/or culture. These studies reported that the validations were translated by bilingual experts and/or experts in the area of care. In addition, three studies [ 25 , 29 , 40 ] reported that the translation process followed International Test Commission guidelines, such as those of Beaton et al. [ 47 ], Guillemin [ 48 ], Hambleton et al. [ 49 ], and Muñiz et al. [ 50 ]. Evaluation by judges, who referred to the relevance, clarity and importance of the content, was divided into two categories: expert evaluation (a panel of expert judges for each of the areas to consider in the evaluation instrument) and experiential evaluation (potential participants testing the test). The first type of evaluation occurred in three of the articles [ 28 , 29 , 46 ], while the other occurred in two [ 25 , 40 ]. Only one of the items [ 29 ] reported that the scale contained items that reflected the dimension described in the literature. The validity evidence related to the test content presented in each article can be found in Table  2 .

Evidence based on response processes

The second standard, related to the validity of the response process, was obtained according to the “Standards” from the analysis of individual responses: “questioning test takers about their performance strategies or response to particular items (…), maintaining records that monitor the development of a response to a writing task (…), documentation of other aspects of performance, like eye movement or response times…” [ 37 ] (p. 15). According to the analysis of the validity of the response processes, none of the articles complied with this evidence.

Evidence based on internal structure

The third standard, validity related to internal structure, was divided into three sections. First, the dimensionality of each study was examined in terms of factor analysis, design, estimator, factor extraction method, factors and items, interfactor R, internal replication, effect of the method, and factor loadings. Le et al. [ 40 ] conducted an exploratory-confirmatory design while Sjögren et al. [ 28 ] conducted a confirmatory-exploratory design to assess construct validity using confirmatory factor analysis (CFA) and investigated it further using exploratory factor analysis (EFA). The remaining articles employed only a single form of factor analysis: three employed EFA, and two employed CFA. Regarding the next point, only three of the articles reported the factor extraction method used, including Kaiser’s eigenvalue, criterion, scree plot test, parallel analysis and Velicer’s MAP test. Instrument validations yielded a total of two factors in five of the seven articles, while one yielded a single dimension [ 25 ] and the other yielded three dimensions [ 29 ], as in the original instrument. The interfactor R was reported only in the study by Zhong and Lou [ 29 ], whereas in the study by Martínez et al. [ 25 ], it could be easily obtained since it consisted of only one dimension. Internal replication was also calculated in the Spanish validation by randomly splitting the sample into two to test the correlations between factors. The effectiveness of the method was not reported in any of the articles. This information is presented in Table  3 in addition to a summary of the factor loadings.

The second section examined reliability. All the studies presented measures of internal consistency conducted in their entirety with Cronbach’s α coefficient for both the total scale and the subscales. The ω coefficient of McDonald was not used in any case. Four of the seven articles performed a test-retest test. Martínez et al. [ 25 ] conducted a test-retest after a period of seven days, while Le et al. [ 40 ] and Rokstad et al. [ 27 ] performed it between one and two weeks later and Sjögren et al. [ 28 ] allowed approximately two weeks to pass after the initial test.

The third section analyzes the calculation of invariance, which was not reported in any of the studies.

Evidence based on relationships with other variables

In the fourth standard, based on validity according to the relationship with other variables, the articles that reported it used only convergent validity (i.e., it was hypothesized that the variables related to the construct measured by the test—in this case, person-centeredness—were positively or negatively related to another construct). Discriminant validity hypothesizes that the variables related to the PCC construct are not correlated in any way with any other variable studied. No article (0%) measured discriminant evidence, while four (57%) measured convergent evidence [ 25 , 29 , 30 , 46 ]. Convergent validity was obtained through comparisons with instruments such as the Person-Centered Climate Questionnaire–Staff Version (PCQ-S), the Staff-Based Measures of Individualized Care for Institutionalized Persons with Dementia (IC), the Caregiver Psychological Elder Abuse Behavior Scale (CPEAB), the Organizational Climate (CLIOR) and the Maslach Burnout Inventory (MBI). In the case of Selan et al. [ 46 ], convergent validity was assessed on two items considered by the authors as “crude measures of person-centered care (i.e., external constructs) giving an indication of the instruments’ ability to measure PCC” (p. 4). Concurrent validity, which measures the degree to which the results of one test are or are not similar to those of another test conducted at more or less the same time with the same participants, and predictive validity, which allows predictions to be established regarding behavior based on comparison between the values of the instrument and the criterion, were not reported in any of the studies.

Evidence based on the consequences of testing

The fifth and final standard was related to the consequences of the test. It analyzed the consequences, both intended and unintended, of applying the test to a given sample. None of the articles presented explicit or implicit evidence of this.

The last two sources of validity can be seen in Table  4 .

Table  5 shows the results of the set of validity tests for each study according to the described standards.

The main purpose of this article is to analyze the evidence of validity in different validation studies of the P-CAT. To gather all existing validations, a systematic review of all literature citing this instrument was conducted.

The publication of validation studies of the P-CAT has been constant over the years. Since the publication of the original instrument in 2010, seven validations have been published in other languages (taking into account the Italian version by Brugnolli et al. [ 31 ], which could not be included in this study) as well as a modification of one of these versions. The very unequal distribution of validations between languages and countries is striking. A recent systematic review [ 51 ] revealed that in Europe, the countries where the PCC approach is most widely used are the United Kingdom, Sweden, the Netherlands, Northern Ireland, and Norway. It has also been shown that the neighboring countries seem to exert an influence on each other due to proximity [ 52 ] such that they tend to organize healthcare in a similar way, as is the case for Scandinavian countries. This favors the expansion of PCC and explains the numerous validations we found in this geographical area.

Although this approach is conceived as an essential element of healthcare for most governments [ 53 ], PCC varies according to the different definitions and interpretations attributed to it, which can cause confusion in its application (e.g., between Norway and the United Kingdom [ 54 ]). Moreover, facilitators of or barriers to implementation depend on the context and level of development of each country, and financial support remains one of the main factors in this regard [ 53 ]. This fact explains why PCC is not globally widespread among all territories. In countries where access to healthcare for all remains out of reach for economic reasons, the application of this approach takes a back seat, as does the validation of its assessment tools. In contrast, in a large part of Europe or in countries such as China or South Korea that have experienced decades of rapid economic development, patients are willing to be involved in their medical treatment and enjoy more satisfying and efficient medical experiences and environments [ 55 ], which facilitates the expansion of validations of instruments such as the P-CAT.

Regarding validity testing, the guidelines proposed by the “Standards” [ 37 ] were followed. According to the analysis of the different validations of the P-CAT instrument, none of the studies used a structured validity theory-based procedural framework for conducting validation. The most frequently reported validity tests were on the content of the test and two of the sections into which the internal structure was divided (i.e., dimensionality and internal consistency).

In the present article, the most cited source of validity in the studies was the content of the test because most of the articles were validations of the P-CAT in other languages, and the authors reported that the translation procedure was conducted by experts in all cases. In addition, several of the studies employed International Test Commission guidelines, such as those by Beaton et al. [ 47 ], Guillemin [ 48 ], Hambleton et al. [ 49 ], and Muñiz et al. [ 50 ]. Several studies also assessed the relevance, clarity and importance of the content.

The third source of validity, internal structure, was the next most often reported, although it appeared unevenly among the three sections into which this evidence was divided. Dimensionality and internal consistency were reported in all studies, followed by test-retest consistency. In relation to the first section, factor analysis, a total of five EFAs and four CFAs were presented in the validations. Traditionally, EFA has been used in research to assess dimensionality and identify key psychological constructs, although this approach involves a number of inconveniences, such as difficulty testing measurement invariance and incorporating latent factors into subsequent analyses [ 56 ] or the major problem of factor loading matrix rotation [ 57 ]. Studies eventually began to employ CFA, a technique that overcame some of these obstacles [ 56 ] but had other drawbacks; for example, the strict requirement of zero cross-loadings often does not fit the data well, and misspecification of zero loadings tends to produce distorted factors [ 57 ]. Recently, exploratory structural equation modeling (ESEM) has been proposed. This technique is widely recommended both conceptually and empirically to assess the internal structure of psychological tools [ 58 ] since it overcomes the limitations of EFA and CFA in estimating their parameters [ 56 , 57 ].

The next section, reliability, reports the total number of items according to Cronbach’s α reliability coefficient. Reliability is defined as a combination of systematic and random influences that determine the observed scores on a psychological test. Reporting the reliability measure ensures that item-based scores are consistent, that the tool’s responses are replicable and that they are not modified solely by random noise [ 59 , 60 ]. Currently, the most commonly employed reliability coefficient in studies with a multi-item measurement scale (MIMS) is Cronbach’s α [ 60 , 61 ].

Cronbach’s α [ 62 ] is based on numerous strict assumptions (e.g., the test must be unidimensional, factor loadings must be equal for all items and item errors should not covary) to estimate internal consistency. These assumptions are difficult to meet, and their violation may produce small reliability estimates [ 60 ]. One of the alternative measures to α that is increasingly recommended by the scientific literature is McDonald’s ω [ 63 ], a composite reliability measure. This coefficient is recommended for congeneric scales in which tau equivalence is not assumed. It has several advantages. For example, estimates of ω are usually robust when the estimated model contains more factors than the true model, even with small samples, or when skewness in univariate item distributions produces lower biases than those found when using α [ 59 ].

The test-retest method was the next most commonly reported internal structure section in these studies. This type of reliability considers the consistency of the scores of a test between two measurements separated by a period [ 64 ]. It is striking that test-retest consistency does not have a prevalence similar to that of internal consistency since, unlike internal consistency, test-retest consistency can be assessed for practically all types of patient-reported outcomes. It is even considered by some measurement experts to report reliability with greater relevance than internal consistency since it plays a fundamental role in the calculation of parameters for health measures [ 64 ]. However, the literature provides little guidance regarding the assessment of this type of reliability.

The internal structure section that was least frequently reported in the studies in this review was invariance. A lack of invariance refers to a difference between scores on a test that is not explained by group differences in the structure it is intended to measure [ 65 ]. The invariance of the measure should be emphasized as a prerequisite in comparisons between groups since “if scale invariance is not examined, item bias may not be fully recognized and this may lead to a distorted interpretation of the bias in a particular psychological measure” [ 65 ].

Evidence related to other variables was the next most reported source of validity in the studies included in this review. Specifically, the four studies that reported this evidence did so according to convergent validity and cited several instruments. None of the studies included evidence of discriminant validity, although this may be because there are currently several obstacles related to the measurement of this type of validity [ 66 ]. On the one hand, different definitions are used in the applied literature, which makes its evaluation difficult; on the other hand, the literature on discriminant validity focuses on techniques that require the use of multiple measurement methods, which often seem to have been introduced without sufficient evidence or are applied randomly.

Validity related to response processes was not reported by any of the studies. There are several methods to analyze this validity. These methods can be divided into two groups: “those that directly access the psychological processes or cognitive operations (think aloud, focus group, and interviews), compared to those which provide indirect indicators which in turn require additional inference (eye tracking and response times)” [ 38 ]. However, this validity evidence has traditionally been reported less frequently than others in most studies, perhaps because there are fewer clear and accepted practices on how to design or report these studies [ 67 ].

Finally, the consequences of testing were not reported in any of the studies. There is debate regarding this source of validity, with two main opposing streams of thought. On the one hand [ 68 , 69 ]) suggests that consequences that appear after the application of a test should not derive from any source of test invalidity and that “adverse consequences only undermine the validity of an assessment if they can be attributed to a problem of fit between the test and the construct” (p. 6). In contrast, Cronbach [ 69 , 70 ] notes that adverse social consequences that may result from the application of a test may call into question the validity of the test. However, the potential risks that may arise from the application of a test should be minimized in any case, especially in regard to health assessments. To this end, it is essential that this aspect be assessed by instrument developers and that the experiences of respondents be protected through the development of comprehensive and informed practices [ 39 ].

This work is not without limitations. First, not all published validation studies of the P-CAT, such as the Italian version by Brugnolli et al. [ 31 ], were available. These studies could have provided relevant information. Second, many sources of validity could not be analyzed because the studies provided scant or no data, such as response processes [ 25 , 27 , 28 , 29 , 30 , 40 , 46 ], relationships with other variables [ 27 , 28 , 40 ], consequences of testing [ 25 , 27 , 28 , 29 , 30 , 40 , 46 ], or invariance [ 25 , 27 , 28 , 29 , 30 , 40 , 46 ] in the case of internal structure and interfactor R [ 27 , 28 , 30 , 40 , 46 ], internal replication [ 27 , 28 , 29 , 30 , 40 , 46 ] or the effect of the method [ 25 , 27 , 28 , 29 , 30 , 40 , 46 ] in the case of dimensionality. In the future, it is hoped that authors will become aware of the importance of validity, as shown in this article and many others, and provide data on unreported sources so that comprehensive validity studies can be performed.

The present work also has several strengths. The search was extensive, and many studies were obtained using three different databases, including WoS, one of the most widely used and authoritative databases in the world. This database includes a large number and variety of articles and is not fully automated due to its human team [ 71 , 72 , 73 ]. In addition, to prevent publication bias, gray literature search engines such as Google Scholar were used to avoid the exclusion of unpublished research [ 44 ]. Finally, linguistic bias was prevented by not limiting the search to articles published in only one or two languages, thus avoiding the overrepresentation of studies in one language and underrepresentation in others [ 43 ].

Conclusions

Validity is understood as the degree to which tests and theory support the interpretations of instrument scores for their intended use [ 37 ]. From this perspective, the various validations of the P-CAT are not presented in a structured, valid, theory-based procedural framework like the “Standards” are. After integration and analysis of the results, it was observed that these validation reports offer a high number of sources of validity related to test content, internal structure in dimensionality and internal consistency, a moderate number of sources for internal structure in terms of test-retest reliability and the relationship with other variables, and a very low number of sources for response processes, internal structure in terms of invariance, and test consequences.

Validity plays a fundamental role in ensuring a sound scientific basis for test interpretations because it provides evidence of the extent to which the data provided by the test are valid for the intended purpose. This can affect clinical practice as people’s health may depend on it. In this sense, the “Standards” are considered a suitable and valid theory-based procedural framework for studying this modern conception of questionnaire validity, which should be taken into account in future research in this area.

Although the P-CAT is one of the most widely used instruments for assessing PCC, as shown in this study, PCC has rarely been studied. The developers of measurement tests applied to the health care setting, on which the health and quality of life of many people may depend, should use this validity framework to reflect the clear purpose of the measurement. This approach is important because the equity of decision making by healthcare professionals in daily clinical practice may depend on the source of validity. Through a more extensive study of validity that includes the interpretation of scores in terms of their intended use, the applicability of the P-CAT, an instrument that was initially developed for long-term care homes for elderly people, could be expanded to other care settings. However, the findings of this study show that validation studies continue to focus on traditionally studied types of validity and overlook the interpretation of scores in terms of their intended use.

Data availability

All data relevant to the study were included in the article or uploaded as additional files. Additional template data extraction forms are available from the corresponding author upon reasonable request.

Abbreviations

American Educational Research Association

American Psychological Association

Confirmatory factor analysis

Organizational Climate

Caregiver Psychological Elder Abuse Behavior Scale

Exploratory factor analysis

Exploratory structural equation modeling

Staff-based Measures of Individualized Care for Institutionalized Persons with Dementia

Maslach Burnout Inventory

Multi-item measurement scale

Maximum likelihood

National Council on Measurement in Education

Person-Centered Care Assessment Tool

• Person-centered care

Person-Centered Climate Questionnaire–Staff Version

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

International Register of Systematic Review Protocols

Standards for Educational and Psychological Testing

weighted least square mean and variance adjusted

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This work is one of the results of research project HIM/2015/017/SSA.1207, “Effects of mindfulness training on psychological distress and quality of life of the family caregiver”. Main researcher: Filiberto Toledano-Toledano Ph.D. The present research was funded by federal funds for health research and was approved by the Commissions of Research, Ethics and Biosafety (Comisiones de Investigación, Ética y Bioseguridad), Hospital Infantil de México Federico Gómez, National Institute of Health. The source of federal funds did not control the study design, data collection, analysis, or interpretation, or decisions regarding publication.

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L.M.B.L. conceptualized the study, collected the data, performed the formal anal- ysis, wrote the original draft, and reviewed and edited the subsequent drafts. M.M.V. collected the data and reviewed and edited the subsequent drafts. C.M.S. collected the data, performed the formal analysis, wrote the original draft, and reviewed and edited the subsequent drafts. J.L.S. collected the data, wrote the original draft, and reviewed and edited the subsequent drafts. J.G.E. collected the data and reviewed and edited the subsequent drafts. F.T.T. conceptualized the study and reviewed and edited the subsequent drafts. L.M.B.L. conceptualized the study and reviewed and edited the subsequent drafts. M.M.V. conceptualized the study and reviewed and edited the subsequent drafts. C.M.S. reviewed and edited the subsequent drafts. J.G.E. reviewed and edited the subsequent drafts. F.T.T. conceptualized the study; provided resources, software, and supervision; wrote the original draft; and reviewed and edited the subsequent drafts.

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Bru-Luna, L.M., Martí-Vilar, M., Merino-Soto, C. et al. Person-centered care assessment tool with a focus on quality healthcare: a systematic review of psychometric properties. BMC Psychol 12 , 217 (2024). https://doi.org/10.1186/s40359-024-01716-7

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Essential components of an educational program for implementing skin-to-skin contact for preterm infants in intensive care units: an integrative literature review

• Takalani T. Denge 1 ,
• Nokwanda Edith Bam 2 ,
• Welma Lubbe 1 &
• Annah Rakhudu 2  

BMC Pregnancy and Childbirth volume  24 , Article number:  281 ( 2024 ) Cite this article

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Globally, prematurity is the primary factor behind the mortality of children under the age of 5 years, resulting in approximately 1 million children dying annually. The World Health Organization (WHO) recommends Skin-to-Skin Contact (SSC) as part of routine care for preterm infants. Evidence shows that SSC reduces mortality, possibly by improving thermoregulation, facilitating the earlier initiation of breastfeeding and reducing the risk of nosocomial infection. An educational program for implementing SSC has been demonstrated to enhance the knowledge and practice of parents and nurses in intensive care units. This study, the first of its kind in the North West Province (NWP), aims to identify the essential components of an educational program for implementing SSC for premature infants in intensive care units.

This paper presents an integrative literature review that critically synthesizes research-based literature on essential components of an educational program for implementing SSC for preterm infants in intensive care units.

A comprehensive search of electronic databases, such as CINAHL, MEDLINE, PsycINFO, ProQuest and Health Source: Nursing/Academic Edition and Health Source-Consumer Edition, was conducted using different keywords and references lists from the bibliography.

Twelve articles relevant to this review were identified, read and synthesized to answer the research question. Three essential components emerged from the findings of this review, namely (1) the necessity of policy and role players for implementing SSC, (2) the availability of education and training, and (3) counseling and support for parents of preterm infants.

Conclusions

The outcomes of this study have the potential to facilitate the implementation and expansion of SSC in intensive care units. This could aid program implementers, policymakers, and researchers to implement and scale up this important tool in intensive care units.

Peer Review reports

Introduction and background

An estimated 13, 4 million infants were delivered prematurely in 2020, indicating that more than 1 to 10 births are premature [ 1 ]. Up to 70% of neonatal deaths occur in preterm or Low Birth Weight (LBW) infants within the first 3 days after birth, but the mortality can be reduced by effective newborn care [ 1 ]. Although progress has been made in reducing infant mortality rate globally, more than 45% of the five million under-five mortality rate caters for infants death in the first months of life and approximately one million of these children die within the first 28 days from prematurity and LBW [ 2 ]. According to the World Health Organization (WHO), a preterm infant is infant born after the first day of the last menstrual period but before the completion of 37 weeks of gestation; that is, they have a small gestational age and LBW [ 3 ].

In South Africa, the neonatal mortality rate in 2017 was reported as 12 per 1000 live births [ 4 ]. Moreover, approximately 10% of the preterm infants born in South Africa do not survive and this could be viewed as a serious threat to childhood outcomes [ 4 ]. Addressing the global burden of preterm birth is essential for reducing preterm-related neonatal and child mortality and achieving the Sustainable Development Goal (SDG) target 3.2 (which commits to reducing neonatal mortality to 12 or fewer deaths per 1000 livebirths [ 5 ]. Therefore, the WHO published new recommendations on the care of preterm infants, such as skin-to-skin contact (SSC), in order to reduce mortality in preterm and low-birth-weight babies [ 3 ].

SSC has been shown to have positive effects on preterm infants in intensive care units. Several studies found that it is associated with a reduction in neonatal mortality rate, improved growth, neurodevelopmental outcomes, and breastfeeding [ 6 , 7 ]. SSC has been shown to alleviate maternal anxiety, reshape the maternal role, promote active breast pumping, and build maternal confidence in the care of the baby. Therefore, SSC should be considered as a standard of care for preterm infants, as it provides numerous benefits for both infants and mothers.

Implementing an educational program for SSC has been shown to improve the knowledge and practices of parents and nurses with preterm infants in intensive care units [ 8 , 9 ]. In addition, Ragad et al. further stated that virtual education and supportive programs improve mothers’ resilience with preterm infants in intensive care units [ 10 ]. Nurses’ knowledge and provision of SSC can be improved through structured training programs, which address barriers to early initiation of SSC in preterm infants [ 11 ]. Therefore, continuous educational programs are recommended to increase awareness and ensure sufficient knowledge and practice of SSC among parents of preterm infants.

An educational program to implement SSC and early breastfeeding in a rural hospital in Mexico was developed using a two-step approach. This study found that a simple and low-cost educational program resulted in SSC and early breastfeeding being included as part of standard care in a rural hospital [ 12 ]. This type of program is essential because mothers of preterm infants need specific information, since the type of information aimed parents in general does not meet their specific needs.

Researchers of a study conducted in Canada found that a digital educational program improved parents’ knowledge and fostered exchanges between parents and nurses [ 13 ]. A similar result was achieved in a study conducted by Mukarubayiza and Gowan [ 14 ] at a Kigali district hospital in Rwanda; they concluded that an educational program was effective in improving parents’ knowledge of caring for preterm infants. In addition, Astute and Pandin [ 15 ] highlighted that choosing the right educational method can improve the ablitiy of parents to properly care for and provide developmental care for preterm infants.

Although very limited published literature exists about educational programs regarding the care of preterm infants in intensive care units in Low to Middle-Income Countries (LMICs), there is global consensus that such countries have an urgent need to implement equitable and sustainable programs for vulnerable families. [ 16 , 17 ]. Since the premature birth population is often associated with vulnerable families, there is an urgent need to implement equitable and sustainable program for the care of preterm infants. Therefore, the no studies regarding the essential components of educational programs to implement SSC for preterm infants in intensive care units could be identified in SA, especially in the North West Province (NWP). Thus, this paper aims to conduct an integrative literature review that synthesizes research-based literature on the essential components of an educational program to implement SSC for preterm infants in intensive care units.

Materials and methods

The researcher adopted an Integrative Literature Review (ILR) approach to answer a review question. The ILR is a method of research that explores, critically appraises, synthesizes and presents the findings on available literature regarding a review question. In this instance that question considers the essential components of an educational program to implement SSC for preterm infants in intensive care units [ 18 ]. ILR allows for simultaneous inclusion of quantitative and qualitative data for both experimental and non-experimental studies and mixed method studies [ 19 ]. In addition, the approach incorporates a wide range of purposes: to define concepts, to review theories, to review evidence, and to analyse methodological issues of a particular topic [ 19 ].

Steps of integrative literature review

The ILR employed the framework [ 20 ], by expanding on the data analysis and synthesis stage to enhance the systematic nature and rigour of the process. The following five steps were used: review question, search strategy, critical appraisal, data analysis and synthesis (result discussion of the critical appraisal) and conclusion statement. These steps were discussed in detail with the results obtained from each step. Figure  1 provides a visual presentation of the steps.

The five steps of ILR adopted in this study [ 16 ]

Step 1: Formulation of the review question

The review question refers to the problem formulation, starting with a clear identification of the problem statement, definitions, and formulation of the review question to address the review purpose [ 20 ]. The review question was constructed by utilizing the population, intervention, outcome, and timeframe (PIOT) format as indicated in Table 1 [ 20 ]. For the purpose of this study, the population (P) refers to parents of preterm infants. The interventions (I) comprised essential components of an educational program needed for parents with preterm infants admitted in the intensive care units to implement SSC. Indicators for health and wellbeing of both parents and preterm infants were set as the outcome (O) measure. The time frame (T) was time spent by preterm infants in the intensive care units. Based on the outcomes of the PIOT, the following review question was formulated: “What is stated in published literature regarding the key components of an educational program to implement SSC for preterm infants admitted in the intensive care units?” Below is a table indicating the PIOT format [ 20 ] (Table 1 ).

Step 2: Search strategy

The second step in the review process was to develop a search strategy. The inclusion criteria for this search were all national and international literature (research and non-research) on essential components of an educational program to implement SSC for preterm infants admitted in intensive care units, published from 2019 to 2023. Only studies written in English were included, since it is the language shared by all the review team members and resources for translation services were limited. The studies included in this review used qualitative, quantitative and mixed methods, and thus included a systematic review of documents, interventions, reports, components or strategies, reviews, theses, and dissertations.

Exclusion criteria

Prefaces, letters to editors and editorials were excluded from the search since they represent opinions and are not regarded as primary research. Duplicated articles were also excluded after deciding which one (if they were not identical) provided the most comprehensive data regarding the study. During the search stage of the ILR, studies or documents that did not discuss essential components of an educational program in the title, abstract or text were excluded. The title of each study or article was read to determine its relevance. Studies or articles were excluded if they were not accessible to the researcher via the university’s library and inter-lending options.

Literature search

Studies were collected using multiple data platforms, while a clear description of inclusion and exclusion criteria guided the search process. The search was conducted from February to June 2023 on the following electronic reference databases: CINAHL, MEDLINE, PsycINFO, ProQuest, Health Source – Nursing/Academic Edition, and Health Source – Consumer Edition. Different keywords were used as well as the reference lists from the bibliography of the documents sampled during the previous stages of the study.

The search strategy followed the phrase approach of combining any search terms and keywords with “AND”, “OR”, and the wild card symbol (*) to yield more relevant results. The following search phrases and keywords were used: essential components of an educational program OR intervention AND skin-to-skin contact OR care OR kangaroo-mother care AND parents* OR mothers AND preterm infants* OR premature AND infant or baby* AND intensive care units OR neonate units. A total of 2,050 records were identified. Along with the electronic database search, a manual search of selected records was conducted to search for additional documents or studies that could be considered for inclusion. Figure  2 presents a PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) flow diagram to illustrate the process of identifying and selecting studies for inclusion in the review [ 21 ].

PRISMA diagram for retrieval strategies and exclusion criteria [ 21 ]

Step 3: Critical appraisal

The third step in the ILR process entailed an in-depth appraisal of the relevant documents that were identified during the searches. A critical appraisal was needed to identify any low-quality documents that could be excluded based on the basis of methodological quality and rigour; this would strengthen the evidence included in the final ILR [ 22 ]. In the critical appraisal process, the authors evaluated all the components of each study, including the introduction, methods, findings, and discussion. The trustworthiness, credibility, congruence, and transferability of the qualitative studies’ findings were carefully and systematically determined [ 23 ]. Content validity in quantitative studies was assessed to ensure the developed self-reported instruments to collect data adequately represented the intended scope of the study [ 23 ].

The methodological quality of all 12 selected studies was assessed by means of a checklist in the form of the critical appraisal tool: Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields, which was developed by Kmet et al. [ 22 ]. The 12 studies selected for critical appraisal were assessed by authors, who have experience in the ILR of studies for methodological rigor. The procedure required the authors to check responses (yes, no, N/A) against the 10-question checklist to determine whether a study would be included or not. Scores were interpreted based on the recommended criteria: 50–100 percent denoted a “good” study, while less than 50 percent indicated a “poor” study. Studies with a score below 50 percent were excluded. After discussion, the authors were able to agree on the selected studies to be included. All articles were ranked based on the review guidelines of the tool. The results of the critical appraisal revealed that 12 studies were suitable for inclusion in the review. Table 2 presents the quality score of each of the studies included.

Step 4: Data analysis and synthesis

Throughout the critical appraisal phase that revealed 12 studies suitable for inclusion in the review, the literature was read and re-read several times. In stage four of the review, characteristics of 12 selected studies, including the citation details (authors, year, country of publication), aims, sample, results, and findings relevant to the review question were captured and are illustrated in Table  3

Step 5: Presentation of findings

After synthesizing the data, it is recommended that a summary of the evidence should be written. In order to give a summary and interpretation of outcomes and characteristics of the included documents, the review usually provides both text and tables [ 20 , 21 ]. The ILR report includes an integration of concepts, thoughts, definitions, or other relevant information that were derived from the included documents on the phenomenon being studied. Concluding statements are derived from the analysis and discussion of the synthesized information [ 21 , 33 ]. The authors further critically analyzed and produced three main themes on the essential components of an educational program for implementing SSC for preterm infants as follows:

Theme 1: Policy and role players regarding the implementation of SSC

The institution should formulate a policy regarding the implementation of SSC. The written policy documents should be accessible to the nursing staff involved in the program and should be easy to apply [ 27 ]. Posters summarizing the policy of the institute should be displayed in the centre so that people are aware of SSC, along with its benefits and implementation methods [ 27 ].

A study conducted in Indonesia [ 25 ] aimed to assess the skills of neonatal nurses one year after training found that the development of kangaroo care services in the hospital not only provided training for health personnel but also required continuation, a clear policy and a Standard Operating Procedure (SOP). Therefore, having a policy about the SSC program enhances teaching and reinforces knowledge regarding it [ 25 ].

Theme 2: Education and training on the implementation of SSC

Health education is very important to both nursing staff and parents of preterm infants, and more time should be devoted to SSC activities. It is fundamental for them to comprehend what SSC entails and what its benefits are. In a study conducted in Zambia, mothers accepted SSC after they were given information and education through proper communication [ 27 ]. Providing education is an effort to improve knowledge levels of healthcare professionals regarding evidence-based interventions: exclusive breastfeeding, effective parenting strategies, and SSC in preterm infants [ 25 ].

A study conducted by Samsudin et al. [ 17 ] supported the application of a structured teaching program. They found that a planned teaching program on SSC was a successful method for reducing stress, producing a positive perception and good knowledge of the implementation of SSC [ 17 ]. Therefore, continuing education for healthcare professionals and parents is necessary.

A study conducted in Mexico highlighted that nurses and parents of preterm infants need to be trained through lecture methods, which covered the benefits and methodology of SSC and early breastfeeding, and incorporated recommendations based on the baby-friendly hospital initiative [ 12 ]. In addition, it was found that multiples trainings should be carried out to ensure that any challenges that arise regarding the implementation of SSC can be dealt with [ 12 ]. In order to reduce neonatal morbidity and mortality due to premature birth, it is important need to increase the knowledge and skills not only for mothers but also healthcare professionals.

Furthermore, proper training for healthcare professionals and the creation of a welcoming environment for parents are also essential elements for effective implementation of SSC [ 32 ]. The program should focus on increasing awareness and knowledge about SSC, ensuring enough knowledge and practice about SSC and continuous educational programs to increase awareness about SSC [ 32 ]. Therefore, it is important to emphasize to the mothers of preterm infants that promoting and practising SSC is a cost-effective intervention with social and economic benefits [ 24 ].

Theme 3: Counselling and support for healthcare professional and parents of preterm imfants

Counseling and support for mothers and neonatal nurses as it relates to SSC for preterm infants is crucial for improving outcomes. Nurses play a significant role in providing support to mothers in intensive care units and should be equipped with strategies to reduce maternal stress [ 34 ]. Mothers of preterm infants perceive nursing support as encompassing the delivery of information, professional care and emotional support [ 34 ]. Furthermore, nurses should have a comprehensive understanding of parents' education and support needs, and standardized tools should be used to identify these needs [ 35 ]. A study conducted in Southern Ethopia concluded that mothers should be counseled during antenatal care and after delivery to improve their knowledge regarding SSC [ 31 ].

The goal of this integrative literature review was to identify, synthesize and present findings on essential components of an educational program to implement SSC for preterm infants in intensive care units. The study highlighted the essential components of an educational program to implement SSC for preterm infants. They include policy formulation and role players for the implementation of SSC, education and training as well as counseling and support nurses and mothers of preterm infants.

The evidence supports the importance of policy implementation and the involvement of various role players, including nursing staff and parents, in promoting and facilitating SSC for preterm infants. This finding concurs with the study conducted by Nuraini et al. [ 25 ] who concluded that the development of SSC leads to the clear formulation of policy and SOP.

The included studies revealed that structured education on the evidence-based practice and benefits of SSC helps to overcome a lack of knowledge regarding SSC for parents of preterm infants and healthcare professionals. An educational program was found to be effective in improving parental knowledge in caring for preterm infants in a district hospital in neonatal intensive care unit in Kigali [ 14 , 29 ]. Therefore, the findings of a study can serve as an instructive demonstration for healthcare professionals and parents who are able to effectively employ SSC and enable the advantages to be obtained by preterm infants. In addition, a study conducted by Herzberg et al. [ 34 ] indicated that the nurse manager plays a role in providing support and opportunities for ongoing education.

The findings from this study confirmed that more research is needed on educational programs in order to reduce mortality and morbidity rates among preterm infants [ 36 ]. Despite recent changes in the provision of health care for preterm infants, nurses still experience several barriers in successfully implementing SSC in the healthcare settings. The review conducted by Maniago et al. [ 26 ] reported strategies to reduce barriers and to improve utilization of SSC as clear guidelines, sufficient supplies and equipment, capacity building among staff and proper information dissemination for parents regarding SSC. Moreover, after the implementation of advocacy, training, and promotion of intermittent SSC to premature infants, it was well-received by their parents [ 28 , 37 ].

By identifying the essential components for implementation of SSC, it becomes possible to design an educational program that can support the continued growth and development of premature infants and the overall well-being of parents. This can be achieved more quickly by including the parents’ and nurses’ inputs to ensure their needs are incorporated into the program. Therefore, this study recommends the continuous promotion of SSC education as proven to be safe and efficacious in managing preterm infants. Additional research and investigations are warranted to ascertain the effectiveness of various educational methods with regard to enhancing knowledge and practice related to SSC for parents of preterm infants. The urgency for research in the domain of awareness and practice is thus underscored.

This study has several limitations. The current ILR shows the absence of published studies in LMICs in Africa. Further research beyond the boundaries of high-income countries is required to determine the essential components to be incorporated in an educational program to implement SSC for preterm infants in LMICs. Moreover, only studies published in English were selected for inclusion due to limited resources for translation services. Therefore, some studies published in other languages may provide varying or more diverse perspectives on the essential components of such an educational program. Despite these limitations, the current study's findings can serve as a foundation for the development of an educational program that targets healthcare professionals and parents of preterm infants in intensive care units.

A comprehensive literature search spanning the recent literature identified twelve studies on essential components of an educational program for implementing SSC for preterm infants in intensive care units. The integrative review captured the following essential components: policy and role players on implementation of SSC, education and training as well as counseling and support needs for nurses and parents of preterm infants. The results of this study could aid program implementers, policy makers, and researchers to implement and scale up this important tool of SSC in intensive care units and its potential to improve breastfeeding practices. Further research regarding educational program for implementing SSC for preterm infants in intensive care units is warranted.

Availability of data and materials

The dataset used and analysed during the current reviews are available from the corresponding author on reasonable request.

Abbreviations

Critical Appraisal Skills Program

Integrative Literature Review

Kangaroo Mother Care

Low Birth Weight

Low-to-Middle Income Countries

Population, Intervention, Outcome and Time frame

North West Province

South Africa

Standard Operating Procedure

Skin to Skin Contact

World Health Organization

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Acknowledgements

The reviewers express gratitude to the NWU research team for the guidance and assistance through the process of this review by means of online workshops.

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Open access funding provided by North-West University. Open access funding provided by North-West University. The NWU provided financial support in the form of a bursary for the review (grant number-not applicable).

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Denge, T.T., Bam, N.E., Lubbe, W. et al. Essential components of an educational program for implementing skin-to-skin contact for preterm infants in intensive care units: an integrative literature review. BMC Pregnancy Childbirth 24 , 281 (2024). https://doi.org/10.1186/s12884-024-06447-6

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• Early integration of basic palliative care in cancer: scoping review of cross-sectorial models – components, facilitators, barriers
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• http://orcid.org/0000-0003-4289-2193 Johanna Ingrid Elin Swenne 1 , 2 ,
• Torben Frøstrup Hansen 2 , 3 ,
• Ricko Damberg Nissen 4 ,
• Karina Dahl Steffensen 2 , 5 ,
• Mette Stie 3 ,
• Jens Søndergaard 4 and
• Lars Henrik Jensen 2 , 3
• 1 Department og oncology , Vejle Hospital , Vejle , Denmark
• 2 Institute of Regional Health Research, Faculty of Health Sciences , University of Southern Denmark , Odense , Syddanmark , Denmark
• 3 Department of Oncology , Vejle Hospital - University Hospital of Southern Denmark , Vejle , Denmark
• 4 Research Unit of General Practice, Department of Public Health , University of Southern Denmark , Odense , Syddanmark , Denmark
• 5 Center for Shared Decision Making , Vejle Hospital - University Hospital of Southern Denmark , Vejle , Denmark
• Correspondence to Johanna Ingrid Elin Swenne, Department og oncology, Vejle Hospital, Vejle, Denmark; johanna.swenne{at}rsyd.dk

Background Shared care between oncology specialists and general practice regarding the delivery of palliative care (PC) is necessary to meet the demands for a cohesive PC. The primary objective of this study is to investigate models of cross-sectorial integration between primary care and oncology specialists that have been developed to promote early and basic PC and factors influencing the process.

Method A scoping review was conducted using publications dated up until April 2023. Searches were conducted in MEDLINE, CINAHL, Embase, Web of Science and ProQuest Dissertations and Theses. Complementary searches were performed via reference lists and grey literature. Explicit early PC models aimed at patients with cancer aged ≥18 years with healthcare professionals from primary care and oncology constituted the inclusion criteria. The screening of the papers was performed independently by two reviewers. The reporting adheres to the extension for scoping reviews of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Results The search provided 5630 articles of which six met the eligibility criteria, each describing a different model of early and cross-sectorial, integrated PC. 12 active components were identified. Education of staff as well as good communication and cooperation skills are essential factors to succeed with integrated, early PC.

Conclusion Integration of PC between general practice and oncology specialists has potential. The components of basic PC have been established. Factors known to influence the process are trust, communication and a common goal. Further research is required into strategies for approaching different levels of integration.

• Quality of life
• Hospital care
• Education and training
• Clinical decisions

Communication

• Clinical assessment

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

https://doi.org/10.1136/spcare-2023-004651

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WHAT IS ALREADY KNOWN ON THIS TOPIC

The demand for palliative care for patients with advanced cancer is increasing and existing palliative services are not sufficient.

Published trials have shown that early integration of specialised palliative care increases the patient’s quality of life and survival. In some cases, health care costs are also reduced.

There is no comprehensive overview of current evidence supporting the integration of basic palliative care between oncology specialists and general practice.

WHAT THIS STUDY ADDS

The current study is the first review of early palliative care models integrated between the primary sector and oncology specialists.

The key components of basic palliative care include early identification, education, communication, advance care planning and to require assessment and symptom management, coordination, multidisciplinary team meetings, involvement of informal caregivers and continuous quality improvement.

Several factors at all levels of integration influence the process of implementing a new model of early, basic palliative care. Education and communication are essential factors that have to be considered.

IMPLICATIONS FOR RESEARCH, PRACTICE AND POLICY

A more detailed report on the development, implementation and evaluation process of each model is needed.

The key components of basic palliative care entail different challenges and prerequisites than specializedspecialised palliative care, which have to be further investigated.

Fully integrated shared care requires more comprehensive strategies for all levels of integration.

Introduction

The increasing number of patients living with advanced cancer and the increasingly comprehensive cancer care have major societal implications worldwide. 1 2 Early integration of specialised palliative care (SPC) has been shown to improve the patients’ quality of life (QoL) and reduce healthcare costs, 3–7 but SPC services will not be able to meet the demand for palliation. 8 Moreover, not every patient with advanced cancer has a complex symptom burden requiring SPC. 9 Therefore, basic palliative care (BPC) should be integrated to a much greater extent to meet the needs of the patients. 10

BPC represents the standard of palliative care (PC), which can be provided to patients with a life-limiting disease by all healthcare professionals (HCP) in primary and secondary care within their normal duties. 11 According to WHO, BPC should be integrated as a shared care, where all relevant HCPs are involved across the healthcare sectors. 12 It is not meant to be a substitute for SPC but rather a supporting and complementing service. Based on a health system, integrated care is defined as ‘The management and delivery of health services so that clients receive a continuum of preventive and curative services according to their needs over time and across different levels of the health system’. 13 This puts primary care and the general practitioner (GP) in a good position to collaborate more systematically with oncology specialists during the trajectory of PC. The GP has a pivoting role in insuring all aspects of continuity through the disease trajectory, from diagnosis until death, due to their ongoing relationship with the patients and families. 14 Hence, involving the GP is favourable in order to handle the increasing needs at all levels, but it requires a change in the way PC is delivered. 2 12 15–17

The research field of early integration of PC is under expansion and development. It is debated, how to best build and evaluate such a complex structure. Models are criticised for not covering the whole circle of care and honouring only moderate integration. 18 Consequently, to achieve a high degree of integration a variety of strategies is needed; systematic integration (coordinating policies and regulatory frameworks), normative integration (having shared values, culture and visions), organisational integration (coordinating structures, management and relationships across sites), administrative integration (budgets and financial systems across sites) and clinical integration (coordinating information and services and integrating patient care within a single process). 19 The approach to early PC is proactive as opposed to late involvement of PC. 20 Therefore, the awareness of effective components and understanding of their requirements in specific contexts and settings is needed.

There is a growing body of literature on interventions for either oncology specialists or GPs working with early BPC, and several models of integrated SPC have been tested. We hypothesise that early integration of BPC between the oncology specialist and the GP as shared care will increase the QoL of patients with advanced cancer. Therefore, we aim to identify and systematically map the evidence on relevant models, their components, facilitators and barriers to a successful early and cross-sectorial integration of BPC. To our knowledge, no previous reviews summarise developed models and practical implementation issues for this setting.

Objective 1: Elucidate which models of cross-sectorial integration between primary care and the oncology specialists have been investigated in order to provide early BPC.

Objective 2 : Elucidate the characteristics and key components used to build the models.

Objective 3 : Elucidate facilitators of and barriers to the implementation of the models.

Protocol and registration

The scoping review method was chosen for this study due to the complex nature of early and cross-sectorial PC. We wanted to identify and systematically map relevant models and a scoping review protocol was drafted according to the Joanna Briggs Institute (JBI) methodology guidelines based on the framework by Arksey and O’Malley and Levac et al . 21–23 It was finalised by the research team and registered prospectively with the Open Science Framework on 4 April 2022 ( https://osf.io/pt43k ). 24 The search results are presented according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR). 25

Eligibility criteria

Studies describing a model or a component of health service investigating early BPC were included, if the setting involved an HCP from primary care and an oncology specialist. Studies integrating SPC were excluded. The WHO’s definition of PC were used. 12 We define a model as an organisational structure required to deliver a particular care intervention within a healthcare system shaped by defined standards and theories. 26 Care models rely on multiple active components defined as active parts or key elements required to support the delivery of the services. 26 Integrated care refers to structured efforts to provide coordinated and multidisciplinary care by two or more communicating and collaborating care providers. 13 Since there is no consensus on the definition of early PC, studies were included if they had an early PC intent. 27 Individual participants were not a feature in the search strategy. We only considered studies with participants ≥18 years old with any type of cancer ( online supplemental appendix 2 ).

Supplemental material

Information sources.

A systematic search was carried out in the databases MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), Web of Science (Clarivate Analytics) and ProQuest Dissertations and Theses (ProQuest). Studies published until April 2023 were included. Any quantitative or qualitative study design was eligible for inclusion. No time or language limits were imposed in the search, although only studies in English, Danish, Swedish and Norwegian were included.

An experienced research librarian at the University of Southern Denmark was consulted for assistance with the three-step search strategy. The developed search strategy was inspired by the population, Intervention, Comparision and Outcome (PICO) mnemonic. 23 To achieve relevant and more precise result we used a two-string search. First, an initial limited search was conducted in MEDLINE followed by an analysis of the text and index words in order to identify the following keywords: (1) Oncology, (2) primary care, (3) PC and (4) cross-sectorial cooperation ( online supplemental appendix 1 , MEDLINE search string). Second, a search using all identified keywords and index terms was conducted across all included databases. Third, the reference lists of included studies were scanned for additional eligible studies. To locate grey literature we screened relevant databases, national guidelines, reports and targeted websites. The initial search was performed on 21 April 2022 and complemented by another search on 22 April 2023.

Selection of sources

We used Covidence online software to manage imported references. 28 Titles and abstracts of retrieved studies were screened independently by three review authors (first author JIES, KDS and MS). They were coded as ‘Accept for full-text review’ or ‘Reject for full-text review’. The full texts of the potentially eligible studies were retrieved and independently assessed for eligibility by two review authors (JIES and MS). Any disagreement as to eligibility was resolved through discussion and consensus, involving a third reviewer (LHJ).

Data charting process

Based on the research questions a data-charting tool was developed inspired by the TIDieR checklist. 29 The two review authors independently extracted the data while continuously discussing the results and updating the data-charting tool in an iterative process ( online supplemental appendix 2 , data-charting tool).

Synthesis of results

Data comprised both quantitative and qualitative analyses. We extracted data on article characteristics (author, year published, country of origin, study design, aim, sample size, name of the model, method of model development, evaluation measurements of any formal assessment of implementation) and characteristics of the model under investigation (the aim of the model, involved human resources, setting and stepwise description of the intervention). An inductive approach was applied to identify the components of the models and the barriers and facilitators of their implementation. This implied the collection and analysis of the data without preconceived categories or theories. 30 The first author (JIES) identified and extracted data in an iterative process and mapped each element into conceptual categories. The validity of the final set of components, facilitators and barriers was established through discussions with MS. Results from the data extraction were described and synthesised narratively. Tables and figures are used to provide an overview and support the narratives.

Selection of sources of evidence

A total of 8415 studies were retrieved from the initial search. After deleting duplicates, 5630 titles and abstracts were reviewed, of which 138 met the inclusion criteria. The full text of these studies was searched and screened. Five studies met the eligibility criteria and were included in the study. One additional study was identified through a review of the reference lists. The process resulted in six included studies and is shown in figure 1 : PRISMA flow diagram.

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Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram.

Characteristics of sources of evidence

Included studies were published between 2008 and 2022 with the majority from 2019 to 2022 (n=5). 31–36 Five countries were represented across the studies, that is, Canada, England, Germany, the Netherlands and Scotland. The study designs were one qualitative study with interviews, one randomised controlled trial, one cohort study, one clustered before-after study and two mixed methods studies. Three of the papers represented feasibility studies. The selected descriptive characteristics of the included studies are presented in table 1 .

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Characteristics of included articles

Results of individual sources of evidence

Objective 1: models of cross-sectorial integration between primary care and oncologists—characteristics.

Each study presented its own model. Two models were developed to provide early integrated PC applicable for all patients with chronic and progressive diseases, including cancer. 31 35 The remaining four models were exclusively for oncological patients. 32–34 36 Three models were designed to cover the complete PC trajectory 33–35 and the remaining three to initiate the PC trajectory, hoping for a chain effect with increased quality of the following care. 31 32 36 Two of the models were aimed at the primary sector and had a predominant involvement of the GP. 31 32 Two models aimed at an equal involvement of both sectors 35 36 and two were primarily aimed at a hospital setting. 33 34 Four of the models were integrated into existing infrastructure, workflows and established platforms. 31 32 34 36 In two studies, the model required an organisational change. 33 35 Details of the models under investigation and their content are presented in table 2 .

Characteristics of the models

Objective 2: components of the models

A total of 12 active components were found across the six articles. Some of the components overlap. They are listed in order of frequency below and in table 3 .

Active components of the interventions in the six studies in order of frequency

Early integration

The component of early integration is common for all studies. Three of them used assessment tools to identify patients in need of PC services. 31 33 35 They assessed the patient’s symptom burden and were; the Supportive and Palliative care Indicator Tool (SPICT), the Edmonton Symptom Assessment system (ESAS) and the Palliative Performance Scale (PPS). Two of the studies used ‘the surprise question’ as a time-related strategy in which the clinicians asked themselves if they would be surprised if the patient died within 12 months. 34 35 If the answer was no, the patient was included. One article combined the SPICT and the ‘the surprise question’. 35 Two studies relied on the clinician’s individual judgement or a triggering clinical issue. 32 36 Two studies identified eligible patients during multidisciplinary team (MDT) conferences. 32 35 The physicians were responsible for identifying relevant patients in five of the studies. 31 32 34–36

PC education was also a common component described by five studies. 31–34 36 Three of the studies used interprofessional, standardised education sessions lasting from 30 min to 1-day teaching the HCP about PC and the use of the standardised tools of each model. 31 33 34 In two of the studies, a resource manual supported the interprofessional education by providing information and guides on the relevant intervention. 31 33 In two studies, a resource manual was the only education provided to the participating HCP. 32 36 One study ran a public campaign to supply professional information about PC and thereby increase the awareness of HCPs and stakeholders. 32 Two studies involved ongoing professional education and development during the implementation process. 31 33

Communication was generally an active component in all studies. In four cases it was in writing; from the oncologist to the GP, 32 34 from the oncologist to the patients as preparation for upcoming consultations, 32 36 and as part of a public campaign, 31 respectively. In one study good communication was secured through available MDT members during the entire palliative phase and one appointed care coordinator for each patient available for questions and discussion of the care plan. 35

Advance care planning

Advance care planning (ACP) and Goals of Care conversations were an active component in three of the studies and resulted in a shared care plan. 32 34 35 The conversations were facilitated by a physician in all three studies. Shared decision-making (SDM) was used in two of the studies to support the physicians and involve the patients. 34 35

Involvement of an informal caregiver

Four studies involved an informal caregiver or the family. One appointed an adult who considered him/herself to be the primary caregiver and to which the patient agreed. 33 One study wanted to identify and document a substitute decision-maker. 34 One study encouraged the patient to bring a family member to take part in the process, 36 and in one study the GP had a follow-up session with the informal caregiver 6 weeks postmortem to go through the whole process and investigate whether any kind of support was needed. 35

Coordination

Three studies had an active component to secure coordination and continuity of care. 33–35 They all appointed a coordinator at each site to do specific tasks such as organising the care paths, managing the patient flow or being available to specific patients for questions. Two of the models were also supported by collaborative care plans or common referral criteria among involved sites. 33 34

Multidisciplinary team meetings

Three studies discussed the patients at MDT meetings. Two of them consisted of representatives from the hospital setting (oncology MDT) of which one was responsible for finding eligible patients for inclusion. 32 The other one identified relevant patients and discussed them following a needs assessment. 34 In one study the oncologist and the GP participated in a weekly MDT to discuss the patients they shared. 35

Needs assessment

Three studies described a systematic needs assessment as an active component using standardised tools. 33–35 Two articles used ESAS and PPS, in one of which a nurse was responsible for the needs assessment. 33 34 In one article either the GP or the oncologist was responsible for the assessment using the distress thermometer, Ervaren Druk door Informele Zorg (‘experienced pressure through informal care’) (EDIZ), the Hospital Anxiety and Depression Scale and the Confusion Assessment Method. 35

Initial conversations about palliative care

Two studies had an initial conversation about PC to explore the patients’ readiness, understanding of their illness, prognosis and treatment options. 34 36 In one of the studies, the conversation included an introduction to PC by agreeing on a common definition and a presentation of the different services. 36

Symptom management

Two studies used symptom management as an active component following the needs assessment. 33 34 In one of them a symptom management guideline supported the interventions. 33

Quality improvement

Two studies describe continuous quality improvement incorporated into the model to improve and adjust it during the implementation process, either by reflection talks 31 or by monitoring achieved outcomes. 35

Medication review

One study included medication review by a pharmacist as an active component. 35

Objective 3: facilitators and barriers

Factors influencing the implementation of the models were found in all studies across all levels of integration; society, system and individual levels. Barriers and facilitators were also reported in relation to the development and evaluation of the models. Many factors were found to be both a facilitator and a barrier depending on the context. The factors of each level are shown in table 4 and will be elaborated below.

Facilitators and barriers

Development, implementation and evaluation of the model

Despite the variation of models in the included studies there were common factors in relation to the development, implementation and evaluation processes. Having sufficient time, funds and human resources was an important factor in success. 34 In the development phase, it was essential to involve patients and clinicians to investigate their needs and to map the care pathways, identify decision points and do a service level characterisation. 32 36 Not basing the model on evidence was seen as a barrier. 32 If the model was designed to frame the complexity of PC, focus on high-risk patients benefitting the most from early PC, recruit timely and effectively and was continuously evaluated, the chance of success was increased. 31 33–36

Lack of diversity as to the site of the disease, settings, ethnicity and cultural differences was a barrier to generalisation of the model. 31 32 34 36 It was important with a long timeline for evaluating the model to allow for the patients to experience the benefits of the care. 32–34 36 Few patients and withdrawal of patients because of disease progression and death was a common issue and should be taken into account. 32 33 36 A broad spectrum of outcomes with multiperspective data was recommended to grasp the complexity of the model. 32 35 The lack of a control group was seen as an issue when evaluating the model. 31 Social expectations and selection bias could be facilitators of the implementation but at the same time make the results less reliable. 31 32 35

The public awareness of PC and normative values are today generally seen as barriers. 31 32 Public campaigns could successfully raise the awareness, engage the public and change the social norms to benefitting the PC. 31 32 Value-based health priorities by policymakers and other stakeholders could also influence the integration of PC at all levels, including prioritisation of PC and their integration into continuous medical education. 31 32 36 Policy drivers changing priorities due to unforeseen events and to ‘please’ the public is seen as a barrier to succeed. 32 Cultural differences when it comes to non-with groups could also influence the integration of PC. 36

It is naturally a precondition that the different healthcare sites are willing to participate. 33 Second, the model should be integrated into existing workflows with the aim to leverage them. 34 35 Being able to adjust to a possible need of redistributing some of the existent resources to meet the demand for PC services is an advantage, for example, having longer and more frequent appointments with each patient, being open to more daycare hospitalisation and having a care pathway for rapidly deteriorating patients. 32 35 36 The logistics also require flexibility and responsiveness towards the patients and families 33 34 and a coordinating employee and clinical support were seen as facilitators in the process. 34

Third, to succeed with a cross-sectorial integration of early PC it is important to increase the involvement of the primary sector and cover the whole circle of care. 35 The GP being more responsible and providing coordination and increased involvement in community care are emphasised. 32 33 35 Contextual differences between sites and services and different electronic systems not adjusted to PC needs were barriers to the implementation process. 32 34 Furthermore, it is not possible to control for unforeseen events and the many factors that change over 1 year in the healthcare system. 32 33

Appropriate working conditions for the HCP are important factors to succeed. 31 Knowledge of a coming PC conversation, sufficient time to prepare and a back-up nurse if time is short helps. 32 35 36 Negative factors are busyness, low remuneration and additional administrative workload. 32 35 36

The care should be patient-centred, holistic, proactive, efficient, accessible, continuing and make sense for the patient. 31–33 35 36 All studies agree that this should be obtained through a standardised, organised and consistent approach. A routine and systematic identification of eligible patients and their needs and wishes using standardised tools was emphasised.

Individuals

For individuals, both internal and external factors had an influence on the implementation process.

Healthcare professionals

The awareness, attitude and behaviour of HCPs can both enhance and hamper the implementation process. 32 36 HCPs with a special interest, insight and confidence in PC who are willing to participate facilitate the implementation. 31 34 Level of experience in clinical practice, education, support and systematic self-assessment are contributors. 31 34 36 If HCPs do not have a clear understanding of how PC should be integrated in practice and have presumptions or no knowledge of how PC is delivered at other sites in the healthcare system it is more difficult to succeed. 35 36 Emotional discomfort in providing PC is also an internal factor that has a negative effect on the implementation. HCPs may be hesitant, feel uncertain about the prognosis and find it difficult to manage the many challenging elements of PC, including finding the balance between encouraging the patients and at the same time respecting their wishes. It can also be burdensome to approach the family of deceased patients. 31 32 35 36

All studies agree that good collaboration and communication between sites, HCPs, patients and their families are of utmost importance to a successful implementation. Clear expectations, clarified roles, a coordinating HCP at each site and one per patient, MDT conferences and timely and standardised documentation shared between sectors are facilitating factors. 31–36

The perception, attitude and behaviour of the patients also have an effect on the implementation process. The way death and dying is discussed at home, social norms, level of education and prior exposure to PC are influencing factors. 32 33 36 Feeling ready and prepared to accept being involved in PC conversations is essential to a successful outcome. Patients being positive, confident and in control of the care process have an advantage. 32 35 36 It is more difficult to engage patients who are in despair, feel overwhelmed or have fears about the consequences of PC conversations. 32 36 It is easier for the patients to participate if they have been forewarned and feel prepared. 34–36

During the PC conversations the patients’ understanding of their disease, prognosis and treatment affects their willingness and capability to talk about what they want for the last phases of life. Misconceptions can lead to the patients not ‘feeling the stage yet’. 32 36 Still, reconceptualisation of a patient’s understanding is not always sufficient for them to appreciate what PC could offer due to their coping strategies. 32 36 During PC care, it is important for the patients to maintain dignity and normality and to feel supported. 32 There should be a continuing involvement with timely information and time for reflection in order to adapt. 32 36 Involved and supported relatives are also facilitators of the process. 31 33 35 It is important to check and recheck both the patients’ and the relatives’ understanding of the diagnosis and the care to avoid misconceptions. 36

The relation between the HCP and the patient is important and the perception they have of each other is an influencing factor. 32 36 Physicians protecting the patient’s interest, their understanding of the patient’s perception and their presumptions on behalf of the patient (fear of involving the patient too much leading to distress and pressure on the patient’s time) can affect their timing and approach, which could be a negative factor. 32 35 36 The patients want to feel involved in the treatment decision-making and the care planning. 32 They want to have a say and talk about what is on their mind. 36 However, if the patient leads the intervention, it could become a negative factor. 32

PC can cause tension if there is no common understanding of and expectations to the care. 35 The patient’s awareness of the time pressure on HCPs, seeing PC as not the job of oncologists and not wanting to bother them are barriers. 32 36 Patients relying on and being fixated on the oncologist and therefore having difficulties in engaging with other HCPs is a negative factor. The same applies to patients wanting oncology care and PC separated to avoid the confusion of being connected to both. This could be remedied by good communication, cooperation and understanding of one another. 32 35 36

Summary of evidence

Understanding the characteristics of models of care and lessons learnt during model development and implementation can assist healthcare systems aiming to improve care delivery. We conducted a scoping review to clarify what is known in the literature about cross-sectorial models of early BPC for patients with advanced cancer. Six studies evaluating models of early and basic PC integrated between primary care and oncologists were identified. 12 active components were identified in those models; early integration, education, communication, ACP, involvement of an informal caregiver, coordination, MDT meetings, needs assessment, initial conversations about PC, symptom management, quality improvement and medication review. Factors influencing the implementation process of the models were found at the society, system and individual level. Research in this field has been under significant development during recent years. The included studies but one were published after 2019.

One limitation of the models of care is their universality, particularly their application in countries other than those where the originating studies were conducted. The included studies all originated from high-income countries, yet these countries do not necessarily share similar healthcare systems. A model’s effectiveness depends heavily on various factors that influence its integration across all levels of a healthcare system, underscoring the need for a more systematic consideration of these factors. 37 The current study identified common factors influencing all levels of healthcare. To address and manage issues at different levels of the implementation process, involving patients, clinicians and stakeholders in the development of complex interventions has proven effective, as confirmed by our findings. Highlighting and discussing the influencing factors and their specific contexts are crucial for ensuring transparency and understanding how to adapt and tailor a model or its components to the contexts of other countries. This study has demonstrated that the delivery of healthcare is deeply influenced by its contextual environment, including political, social, economic and cultural aspects, which can vary greatly between countries. Unfortunately, none of the included articles provided an adequate overview of their healthcare system’s context.

This review indicates the need for a broad variety of outcomes and multiperspective data to grasp the complexity of care models. Establishing a consensus on outcomes and their measurement methods is vital to allow for the comparison of results across different studies and contexts. These considerations have been a focal point of discussion since the inception of integrated primary care (PC) models. 38

The models included in this review differed in terms of providers of care and components of the intervention, but all components were inter-linked and aimed to integrate PC as a continuum of care and place the patients in the centre of the process. The diversity of the interventions, however, make generalisation about components and their contribution to the outcomes difficult. 39 On the other hand, since there are many interactions in a complex system that may affect the development of each component, they cannot be adequately described and examined. 40

Consistent with the Golden Standard Framework (GSF) and its seven key tasks of BPC, 41 the constitution of high-quality BPC by medical oncology practices has been defined by a partnership between the American Society of Clinical Oncology and the American Association for Hospice and Palliative Medicine. 42 Due to the oncology services’ responsibility for delivering PC they have outlined nine important domains in BPC; that is, symptom assessment and management (physical, psychosocial, spiritual and cultural), communication and SDM, ACP, coordination and continuity of care, appropriate PC and hospice referral, end of life care and carer support. Our analysis of the components and their roles within the models studied aligns well with the core objectives of the GSF, addressing its essential tasks. The articles included in our review emphasised the early incorporation of basic PC; thus, explicit mention of referrals to SPC was not prevalent. Instead, SPC was depicted as one among various strategies within symptom management and was discussed in the context of educational initiatives. It is crucial to establish clear expectations for HCPs who deliver BPC, delineating their scope of care provision and explicit criteria for SPC referrals. This approach aids HCPs in offering the highest quality of care and ensures patients receive the most appropriate and effective treatment possible. While there is growing emphasis on integrated BPC models that can secure early engagement and increased involvement of the primary sector, strong evidence in support of BPC models is lacking as opposed to that of SPC models. The core components of SPC models may be extracted and adapted into BPC models, but we need to understand how, as BPC has other prerequisites. 43

Shared care is recommended by WHO and is an integrated cooperation between the primary and secondary sectors, for example, the oncologist and the GP. ‘Shared care applies when the responsibility for the health care of the patients is shared between individuals or teams who are part of separate organizations, or where substantial organizational boundaries exist.’ 44 ‘The clinical management should aim to deliver high-quality care based on agreed standards.’ Shared care permits this objective to be delivered through the optimal use of health service resources to meet the needs of patients. This is most effectively achieved by primary care and secondary care clinicians having joint and contemporaneous responsibility for the patient. 45 The definitions of integrated and shared care are aligned, although integrated care is the next step from shared care, as it contains structured and formalised agreements made within the multidisciplinary multicentre shared care team. 46 Only one of the identified models had equal involvement of the GP and the oncologist, where they met routinely and the patient was free to decide which of them to approach. The other models had fixed frames in which the patient would talk either to the oncologist or the GP, and the active communicative components between the sectors were written reports or letters or non-existent. Other ways to communicate were not explained or stated. They resemble the referral relationship between primary and secondary care when the patient is handed over from one clinician to the other, which is the usual practice. This is not in line with a shared care practice and reflects a moderate integration of the sectors.

As shown in this review, good relationships and well-functioning communication is one of the major factors of a successful integration and shared care, which confirms previous findings and recommendations. 47 48 Therefore, more focus should lie on communication and how to connect and bring the two separate sectors together. 49 The transition of PC patients between the sectors might be too complex to be coordinated by administrative standards alone. 50 Moreover, a well-functioning communication and cooperation in PC is a trinity with the patients and their families as the third part. The relation and communication between the patient and different HCPs highly affect their involvement as shown in this review. Many patients lose contact with their GP after entering the oncology setting due to perceptions of the care, the GP and the oncologist. 51 52 A more systematic and continuous communication between the GP, oncologist and the patient, could improve the coordination of management and care.

The individual’s awareness, perception and experience of PC, the system and of others as different contributors to PC have a great influence on BPC and its integration. The growing scientific and policy rhetoric of BPC provision is not yet being straightforwardly translated into service delivery and individual clinical practice. Therefore, it is not surprising that education was one of the most common components in the included studies. Education at all levels is recommended by experts as a key factor of successful integration. 2 In this context education is any way of spreading and increasing the knowledge of PC, for example, blackboard teaching, clinical training, supervision, mentoring and public campaigns. The BPC providers need to be prepared and feel confident in delivering PC. Many physicians and healthcare providers have not received adequate training in BCP, having been educated within a system that prioritises different values, which may result in a reluctance to provide PC. 53 54 By providing further education about the purpose and content of PC and by gaining knowledge as to how PC should be delivered in the system and the role as one self as a provider is a necessity to succeed. Training of the providers to gain the right communication skills is also paramount. The patient needs to understand the purpose of PC and to some extent how the system works in order to be aware of the available services and options. The social norms need to be addressed and changed. Interprofessional, patient and public education is therefore a necessity for integrated PC, which can be obtained in many ways as shown by our findings and previous research. 55

Strengths and limitations

It is a strength of our study that we used the JBI methodological framework to guide a systematic approach. We published a protocol article defining the process of the project, which was followed. A research librarian assisted in the development of the search strategy, we searched multiple databases to find relevant studies and three reviewers performed the screening and data charting process. Moreover, including all types of study designs, with a range of different outcomes, can reflect the fact that Randomized controlled trials with a specific outcome are not always sufficient for reporting on complex interventions, which makes this review a comprehensive summary of models of BPC worldwide. We used the PRISMA-ScR to secure a high reporting quality.

The descriptive nature of this study is a limitation. It does not include comparative statistics due to the scope of our research questions and the broad inclusion criteria. Given the novelty of the field, some unpublished studies presented at conferences were not included. Some articles were excluded due to language limitations. Furthermore, since PC is for all persons with life-limiting diseases, we could have included all specialists in the secondary sector and not only oncology specialists in our search. In accordance with the methodology of a scoping review, we did not perform a methodological quality assessment. This allowed us to explore the literature more broadly, but it may also have led to the inclusion of studies of lower quality. Standard quality assessments, however, may have limited application when evidence is drawn from heterogeneous sources.

Conclusions

Our study aimed to identify and describe relevant models, their components and factors affecting successful early and cross-sectoral integration of BPC. We identified six different models, 12 active components and several factors at all levels of integration influencing the process of successful delivery of BPC. The components of BPC found in this study, confirmed those previously defined.

Further research is warranted on the approach to factors of the implementation process in which education, relationships and appropriate communication seem to have great influence. Not only interpersonal, but also between sites and sectors. Also, it is of utmost importance to be comprehensive and transparent in the context evaluation and development as well as the evaluation in order to get a nuanced picture of the process. The results retrieved from this study will be a resource for the development and the implementation of healthcare models aimed for early and integrated BPC.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

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Contributors JIES: Conceptualisation, Design, Review, Analysis, Writing, Guarantor for the full work. TFH: Design, Revision, Supervision. RDN: Design, Revision. KDS: Review, Revision, Supervision. MS: Review, Analysis, Revision, Supervision. JS: Conceptualisation, Design, Revision. LHJ: Conceptualisation, Design, Review, Revision, Supervision.

Competing interests None declared.

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• Research Article
• Open access
• Published: 20 January 2024

Dementia care pathways in prisons – a comprehensive scoping review

• Samantha Treacy 1 ,
• Steven Martin 2 ,
• Nelum Samarutilake 3 ,
• Veronica Phillips 4 ,
• Ben R. Underwood 3 , 5 &
• Tine Van Bortel   ORCID: orcid.org/0000-0003-0467-6393 2 , 3  

Health & Justice volume  12 , Article number:  2 ( 2024 ) Cite this article

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The number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system.

To examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways.

A scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation.

Sixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom ( n  = 34), followed by the United States ( n  = 15), and Australia ( n  = 12). One further paper was from India.

The literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector.

To our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

The number of older people (defined here as those over 50 Footnote 1 ) being held in prison in England and Wales has almost tripled over the last 20 years, and they now represent 17.1% of that population (Ministry of Justice, 2022a ). The growing number of older people has brought with it an increasing number of health and social care problems, reportedly affecting around 85% of older people in prison, with associated costs (Di Lorito, et al., 2018 ; Hayes et al., 2012 , 2013 ; Senior, et al., 2013 ). It has been estimated that 8.1% of those over the age of 50 in prison have mild cognitive impairment or dementia, which is much higher than estimates for this age group in the general population (Dunne et al., 2021 ; Forsyth et al., 2020 ). This pattern of poor health also increased the vulnerability of older people in prison during the pandemic (Kay, 2020 ).

Prison policy and legislation mandates that health and social care be ‘equivalent’ to that provided in the community (Care Act, 2014 ; Department of Health, 1999 ). Despite this, provisions are reportedly inconsistent, and the government has been described as ‘failing’ in its duty of care (Health and Social Care Committee, 2018 ; HM Inspectorate of Prisons & Care Quality Commission, 2018 ). This is likely exacerbated by the suspension and limiting of healthcare services during the pandemic, noted to have had a ‘profound’ impact on people’s health and wellbeing (HM Inspectorate of Prisons, 2021 ). This may be particularly so for people living in prison with dementia (PLiPWD), whereby the difficulties of delivering health and social care are compounded by inappropriate buildings, environments, and prison regimes (rules and regulations). In addition, PLiPWDs may experience an increase in social isolation, including separation from friends and family, all of which may make their time in prison more challenging (Moll, 2013 ; Peacock et al., 2019 ).

There is no current national strategy for older people in prison in England and Wales, including PLiPWD, although the British government recently agreed that there is a need for one (Justice Committee, 2020 ). A ‘Model for Operational Delivery’ for older people has been published by Her Majesty's Prison & Probation Service ( 2018 ) in England and Wales, though this is guidance only and the “properly resourced and coordinated strategy” previously called for has not been produced (Prisons & Probation Ombudsman, 2017 , p7; Brooke and Rybacka, 2020 ; HM Inspectorate of Prisons, 2019 ; Justice Committee, 2020 ). One way of attempting to standardise and improve the quality of treatment and care in the community has been through the use of care pathways (Centre for Policy on Ageing, 2014 ; Schrijvers et al., 2012 ). Care pathways have been defined as “a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period”, involving an articulation of goals and key aspects of evidence-based care, coordination and sequencing of activities and outcomes evaluation (Vanhaecht, et al., 2007 , p137).

The development of care pathways within the prison system lags behind that of the community, but the National Institute for Health and Care Excellence (NICE) has produced a pathway for prisoner health for England and Wales (National Institute for Health and Care Excellence, 2019 ), and there is a care pathway for older prisoners in Wales (Welsh Government & Ministry of Justice, 2011 ). There has also recently been an overall care pathway developed for people in prison with mild cognitive impairment and dementia, although this has not been implemented as yet, and it does not include any details regarding release and resettlement (Forsyth et al, 2020 ). It has been recommended that care pathways should be developed locally, as they are context-sensitive, should be viewed as processual and flexible, and the needs of the person, their experiences and characteristics need to be taken into account – such as age, gender and race (Centre for Policy on Ageing, 2014 ; Pinder, et al., 2005 ).

Here we review the current literature on people living in prison with dementia. There have been two recent systematic literature reviews conducted on PLiPWD, both of which only included primary research studies that were small in number (Brooke and Rybacka, 2020 ( n  = 10); Peacock et al., 2019 ( n  = 8)), and focused on prevalence, identification (screening and diagnosis), and the need for tailored programming and staff training. Peacock et al., ( 2019 ) identified dementia as a concern and suggested recommendations for improved screening and care practices. Brooke et al. ( 2020 ) noted that, whilst the prevalence of dementia in prison populations was largely unknown, there was a need for national policies and local strategies that support a multi-disciplinary approach to early detection, screening and diagnosis. Neither paper, however, reported on the much more extensive and rich grey literature in this area (Brooke and Rybacka, 2020 ), to help comprehensively identify the systemic and operational problems, barriers and potential solutions that would be useful to consider in developing local dementia care pathways. Therefore, the aim of this paper is to conduct a comprehensive systematic scoping review of the available published literature on the support and management of PLiPWD in prison and upon transitioning into the community, and to identify practice and recommendations that would be useful to consider in the development of a local prison dementia care pathway.

A scoping review methodology using Arksey and O’Malley’s ( 2005 ) five-stage framework was adopted for this review. Reporting was guided by the PRISMA extension for scoping reviews checklist and explanation (Tricco et al., 2018 ). The completed checklist for this review is available in Additional file 1 : Appendix 1.

Identification of relevant reports

The search strategy was formulated by the research team, and included an electronic database search and subsequent hand search. The electronic search involved searching twelve electronic databases: Applied Social Sciences Index and Abstract, Criminal Justice Abstracts, Embase, Medline (OVID), National Criminal Justice Reference Service, Open Grey, Psycinfo, Pubmed, Scopus, Social Services Abstracts, Sociological Abstracts, and Web of Science. The search combined condition-related terms (dementia OR Alzheimer*) AND context-related ones (prison OR jail OR gaol OR penitentia* OR penal OR correctional* OR incarcerat*), with no date or language restrictions, and covered the full range of publications up until April 2022. Additional file 2 : Appendix 2 has an example of the search strategy used.

Electronic searches were supplemented by comprehensive hand searching and reference mining. Searches were also undertaken using: search engines; websites related to prisons and/or dementia (for example, Prison Reform Trust); a database from a previous related literature review (Lee et al, 2019 ); recommendations from academic networking sites; contacting prominent authors in the field directly; government-related websites (for example Public Health England, now called Health Security Agency); recent inspection reports for all prisons in England and Wales from Her Majesty’s Inspectorate of Prisons and the Independent Monitoring Board.

Inclusion and exclusion criteria

Papers were considered suitable for inclusion in this review if they met the following criteria:

Setting: Papers should primarily be set in, or pertain to, prisons. Documents solely referring to community services, hospitals or medical facilities that are not part of the prison system were excluded.

People: Papers involving PLiPWD. Research focused only on older people in prison more generally was excluded, as was research which described the disorienting effects of imprisonment more generally, but which was not related to dementia.

Intervention: Some consideration of the treatment, care, support or management of PLiPWD; this can be health or social-care associated, as well as related to the prison overall, and to any individuals, groups or agencies who visit or work with individuals during their time in prison (including family, friends, charities, probation services). Papers which mostly describe prevalence studies, sentencing practices or profiles were excluded.

Study design: All designs were considered for inclusion. Editorials, book reviews, online blogs, press releases, announcements, summaries, newspaper and magazine articles, abstracts and letters were excluded.

The titles, abstracts and full-text of the papers identified by the searches were screened for inclusion in the review. The screening was undertaken by two independent researchers (ST and NS) for inter-rater reliability purposes (Rutter et al., 2010 ). Any differences of opinion on inclusion were resolved between the researchers (ST, NS and SM), and with the Principle Investigator (TVB).

Charting the data

An extraction template was developed for the review, guided by the PICO formula (Richardson et al., 1995 ) and informed by pathway stages and key areas highlighted in the older prisoner pathways toolkit for England and Wales (Department of Health, 2007 ), and the older prisoner pathway formulated for Wales (Welsh Government & Ministry of Justice, 2011 ). Using this extraction template, all of the data was extracted from the included papers by one member of the research team (ST), with a second researcher extracting data from a third of the papers as a check for consistency (SM). Any unresolved issues were related to the Principle Investigator (TVB) for resolution.

Collating, summarising and reporting results

The review was deliberately inclusive of a wide variety of types of papers, which meant that taking a meta-analytic approach to the data was not feasible. Therefore, a narrative approach to summarising and synthesising the findings and recommendations of the included papers was adopted (Popay et al, 2006 ).

Sixty-seven papers were included in this scoping review. The screening process phases conducted by the research team are shown in Fig.  1 .

PRISMA flow diagram

A brief overview of the key features of each of the papers is presented in Table 1 . All but one of the included papers were from high income countries, with the majority from the United Kingdom ( n  = 34), and then the United States ( n  = 15), Australia ( n  = 12), Canada ( n  = 4), Italy ( n  = 1) and India ( n  = 1). The papers were split into types, with twenty-two guidance and inspection documents, and twenty-seven discussion and intervention description papers. Of the eighteen research and review articles with a defined methodology included there were four literature reviews (one was systematic), nine qualitative studies, four mixed-methods studies (one which followed participants up), and one survey-based study.

Areas to consider in the support and management of PLiPWD during their time in prison and upon their release

The pathway through the prison is shown in Fig.  2 , and typically involves: (i) reception into prison; (ii) assessments, and allocation of the person within prison; (iii) time held in prison; (iv) transfers between prisons, and between prisons and other services such as time spent in hospital; and (v) release and preparations for resettlement in the community. There were also a number of (vi) cross-cutting themes which could potentially impact people with dementia living in prison at each stage across the prison pathway.

Dementia prison pathway considerations

(i) Reception

Upon entry into prison, prisoners are subject to an initial reception screening to identify and support immediate health and social care problems, and those in need of further assessment. An induction to prison rules and regulations also typically occurs at this step.

All papers reported that reception screening with appropriate screening tools was important in identifying cognitive difficulties and in establishing a baseline, but implementation seemed to vary (Peacock et al., 2019 ). One study in England and Wales found only 30% of prisons contacted routinely did this (Forsyth et al., 2020 ). Supporting policy and a service/person to refer to directly for further assessment were also highlighted as useful (Brooke & Jackson, 2019 ; Brooke et al., 2018 ; Gaston & Axford, 2018 ; Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ). Proposed cut-offs for this screening were either 50 years of age ( n  = 7), under 55 years ( n  = 1), or 55 years of age ( n  = 7). One paper reported that only a third of prisoners who were offered this screening accepted it, although the reasons for this were not stated (Patel & Bonner, 2016 ). Another paper suggested that a screening programme could have unintended adverse consequences, that could damage already fragile relationships between staff and people living in prison (Moore & Burtonwood, 2019 ). Whilst many screening tools were mentioned, there are currently no tools validated for use in prisons, and many of those used in the community may be inappropriate (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; du Toit et al., 2019 ; Feczko, 2014 ; Forsyth et al., 2020 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Turner, 2018 ; Williams et al., 2012 ). One validation study found that the Six-item Cognitive Impairment Test (6CIT) was not suitably sensitive for use (Forsyth et al., 2020 ). Other difficulties included the limited amount of time and resources available to screen at reception (Christodoulou, 2012 ; Patterson et al., 2016 ; Peacock et al., 2019 ), and that staff lacked ‘familiarity’ with screening tools (Peacock et al., 2019 ).

Only two papers mentioned the induction process (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) as important. A need for clearly explained information in a dementia-appropriate format (written and verbal) particularly regarding healthcare, and a recommendation that PLiPWD should be regularly reminded of rules and regulations, were suggested.

(ii) Assessment

Following the screening process, the current recommendation is that an initial healthcare assessment takes place in the first seven days after entering prison. During this initial assessment period, although not necessarily within this timeframe, care plans and allocation decisions may also be made regarding where the prisoner is placed within the prison.

An initial older-person-specific health and/or social care assessment or standard process for assessment has been recommended by ten papers, six of which were from government or related bodies. It was also suggested by some papers, that a cognitive assessment should take place at either 50 years ( n  = 6) or 55 years ( n  = 2), which should be repeated every three months ( n  = 3), six months ( n  = 5) or annually ( n  = 12), with the latter including recommendations from NICE guidelines (National Institute for Health and Care Excellence, 2017 ). One study set in England and Wales found that most prisons (60%) that screened older people, did so between 7–12 months (Forsyth et al., 2020 ). Brief and affordable tools were considered more useful (Garavito, 2020 ; Turner, 2018 ), although the Montreal Cognitive Assessment (MOCA) was recommended in the care pathway developed by Forsyth et al. ( 2020 ).

Typically, assessments were conducted by healthcare staff, GPs or a psychologist ( n  = 6), a specialist in-house assessment unit ( n  = 2), or a specific dementia admissions assessment unit ( n  = 4). For further assessment, some prisons had internal teams to refer to ( n  = 5). Forsyth et al. ( 2020 ) recommend referral to external Memory Assessment Services for assessment. A case finding tool was being piloted in one prison (Sindano & Swapp, 2019 ). Assessments included can be found in Table 2 .

Assessments also explored risk and safeguarding (National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), environmental impact (National Institute for Health and Care Excellence, 2017 ), capacity (Prison & Probation Ombudsman, 2016 ), work, education, and drug and alcohol use (Welsh Government and Ministry of Justice, 2011 ) and a person’s strengths (Hamada, 2015 ; National Institute for Health and Care Excellence, 2017 ). Prison staff contributed to some assessments of activities of daily living (ADLs) or prison-modified ADLs (Brooke et al., 2018 ; Brown, 2016 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). Challenges to Assessment can be found in Table 3 .

Twelve papers described or recommended care planning post-assessment, in collaboration with PLiPWD and primary care, or a multi-disciplinary team (MDT) of health, social care and prison staff with external specialists healthcare proxies charities or family (Brown, 2016 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Hamada, 2015 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Welsh Government and Ministry of Justice, 2011 ). However, it was suggested that prison staff be removed from the decision-making process as the dementia progresses, and be part of the ‘duty of care’ of healthcare staff and services (du Toit & Ng, 2022 ). It was recommended too that care plans be disseminated to prison wing staff (Forsyth et al., 2020 ) and peer supporters (Goulding, 2013 ), and that consent be sought for this (Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ) An ombudsman report in England and Wales noted that care plans for PLiPWD who had died in prison were inadequate (Peacock et al., 2018 ), and of the varying degrees of care planning found by Forsyth et al ( 2020 ), it was described typically as “rudimentary” (p26). Care plans are described further in Table 4 .

Many papers reported that prisons did or should make decisions about where people should be accommodated within the prison after health assessments (Brown, 2016 ; Feczko, 2014 ; Forsyth et al., 2020 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ), taking age and health into account. However, despite recommendations that PLiPWD should be placed on the ground floor on low bunks for instance (Baldwin & Leete, 2012 ; Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), there were reports that this was not happening (Inspector of Custodial Services, 2015 ). There were also recommendations for allocations to be made across a region to ensure people are appropriately placed in the prison system (Baldwin & Leete, 2012 ; Booth, 2016 ; Gaston & Axford, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Concerns were expressed about the lack of lower category places for PLiPWD (Department of Health, 2007 ), and the lack of guidance regarding placement of people with high support needs (Sindano & Swapp, 2019 ) in England and Wales.

(iii) Within-prison issues

A number of papers reported on a need for policies or frameworks to support staff to identify, assess and support people who may be living with dementia (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ), without which staff have faced difficulties in providing quality care and support (Feczko, 2014 ; Prisons and Probation Ombudsman, 2016 ). Whilst there were some examples of guidance for dementia (Hamada, 2015 ; Patterson et al., 2016 ; Treacy et al., 2019 ; Turner, 2018 ), it was suggested that all policies should be reviewed and amended to ensure that they are appropriate for older people and people living with dementia (Department of Health,  2007 ; Lee et al., 2019 ; Treacy et al., 2019 ). Specific policy areas are described in Table 5 .

Issues around staff training on dementia were discussed in the majority of papers ( n  = 54) Many of these reported that prison staff either lacked training on dementia, or that training was limited ( n  = 16), with one study in England and Wales reporting that only a quarter of prison staff had received such training (Forsyth et al., 2020 ). Perhaps consequently, a number of papers identified that prison staff required some dementia training ( n  = 19). Staff working on a specialist dementia unit reportedly had a comprehensive 40-h training (Brown, 2014 , 2016 ; Gaston & Axford, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ), and it was suggested that more comprehensive training be facilitated for officers, particularly those working with PLiPWD ( n  = 18) and offender managers ( n  = 2). A need for all staff working with PLiPWD to be supervised was also suggested (Gaston & Axford, 2018 ; Maschi et al., 2012 ). Despite a lack of consensus on content and duration (du Toit et al, 2019 ), typically, the staff training undertaken and recommended was in four areas (Table 6 ). It was also recommended that training for healthcare could be more comprehensive and focused on screening, identification, assessment, diagnoses, supervision and intervention training (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Brown, 2014 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Peacock et al, 2019 ; Treacy et al, 2019 ; Turner, 2018 ; Williams, 2014 ). It is of note that only 21% of healthcare staff in one study in England and Wales reported attending training to identify dementia (Forsyth et al., 2020 ), similar to the figures regarding prison staff in the same study.

Much of the training described in the included papers had been formulated and delivered by dementia- or older people-specific voluntary organisations (Alzheimer’s Society, 2018 ; Brooke et al.  2018 ; Brown, 2016 ; Gaston & Axford, 2018 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Although it has also been recommended to involve health and social care (Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Ministry of Justice, 2013 ; Treacy et al., 2019 ; Turner, 2018 ), and officers and peer supporters (Brooke & Jackson, 2019 ; Masters et al., 2016 ; National Institute for Health and Care Excellence, 2017 ; Treacy et al., 2019 ) in developing the training. In one study, prison staff were also trained to deliver dementia information sessions to their peers (Treacy et al., 2019 ). A suggestion of video-training packages was also made (du Toit et al., 2019 ). Dementia training typically lacked robust evaluation (Brooke et al., 2018 ), although those available generally reported benefits in their understanding of dementia, relationships, and diagnoses (Goulding, 2013 ; HMP Littlehey, 2016 ; Masters et al., 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). It was also reported that some prison staff were resistant to working with PLiPWD (Moll, 2013 ), and that resource limitations resulted in training cuts (HMP Hull, 2015 ; Treacy et al., 2019 ).

Offering healthcare across the spectrum for PLiPWDs, from acute to chronic care, with a focus on preventative and long-term care as well as palliative care was recommended by some papers (Brown, 2014 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Peacock et al, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). The development of care pathways to guide this were also recommended or formulated (du Toit et al., 2019 ; Forsyth et al., 2020 ; Peacock et al., 2019 ), although the majority (69%) of prisons in one study in England and Wales did not have one (Forsyth et al., 2020 ). Clear and formal links with local hospitals, memory clinics, forensic and community teams for planning, training, advice, support and in-reach were also present or recommended by sixteen research and guidance papers. The amount of healthcare cover in prisons in England and Wales reportedly varied with the function of the prison with largely only local prisons having 24-h healthcare staff (Treacy et al., 2019 ), and most other forms of prison having office-type hours’ healthcare cover – including sex offender prisons where the majority of older prisoners are held (Brown, 2016 ; Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ). While specialist services or units for PLiPWD exist in a number of jurisdictions (Baldwin & Leete, 2012 ; Brown, 2016 ; Cipriani et al., 2017 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Treacy et al, 2019 ), more are reportedly needed (Brooke et al., 2018 ; du Toit et al., 2019 ; Forsyth et al., 2020 ; Welsh Government and Ministry of Justice, 2011 ).

Most healthcare teams were reportedly MDT, or this was recommended, alongside joint health and social care working ( n  = 16). A number of healthcare staff acted as the lead for older people in prisons (Department of Health, 2007 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2016 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), with a recommendation that a dementia-trained nurse should lead any dementia care pathways (Forsyth et al., 2020 ) and indeed it was suggested that healthcare staff in general have training and experience in working with older people (Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ; Patterson et al., 2016 ; Public Health England, 2017b ; Treacy et al., 2019 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Whilst one of the recommended roles for healthcare was the prescription and monitoring of medication (Feczko, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ), much of the focus was on early identification and diagnosis, and keeping a dementia register (Department of Health, 2007 ; Moll, 2013 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), and the use of non-pharmacological approaches. These broadly included: psychological interventions (Goulding, 2013 ; Hamada, 2015 ; Moll, 2013 ; Wilson & Barboza, 2010 ); assistance with ADLs and social care (Feczko, 2014 ; Hamada, 2015 ; Hodel & Sanchez, 2013 ; Maschi, et al., 2012 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ); development and delivery of specialist dementia prison programmes (Brown, 2014 , 2016 ; Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Moll, 2013 ; Peacock et al., 2018 ; Wilson & Barboza, 2010 ); reablement and rehabilitation (Welsh Government and Ministry of Justice, 2011 ); relaxation (Wilson & Barboza, 2010 ); safeguarding (Hodel & Sanchez, 2013 ); and cognitive stimulation groups (Moll, 2013 ; Williams, 2014 ). Other possible roles included: training or supporting staff and peer supporters, as reported in fourteen papers, as well as advocacy (Feczko, 2014 ; Peacock et al., 2018 ; Welsh Government and Ministry of Justice, 2011 ), allocation, assessment for offending behaviour groups, risk assessments and disciplinary hearings (Booth, 2016 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ). Challenges to Healthcare are noted in Table 7 .

Palliative care

A care pathway for dying people that meets community standards was recommended (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), as was ensuring that people could choose a preferred place to die (Her Majesty's Prison & Probation Service, 2018 ). Some prisoners were moved to community hospices or hospitals (Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ), or it was felt that they should be (Her Majesty's Prison & Probation Service, 2018 ). Although it was noted that some prisons lack relationships with community hospices or palliative care services and need to foster them (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ).

A number of prisons also reportedly had hospices, particularly in the United States (Brooke et al., 2018 ; Brown, 2016 ; Feczko, 2014 ; Goulding, 2013 ; Williams et al., 2012 ), although these have not been comprehensively evaluated (Williams et al., 2012 ). It was recommended that these be staffed by MDTs (Her Majesty's Prison & Probation Service, 2018 ), including chaplains and nutritionists (Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), and many included prisoner peer supporters (Brooke et al., 2018 ; Goulding, 2013 ). The use of independent contractors was also suggested as staff-prisoner relationships were considered problematic in some prisons (Williams et al., 2012 ). Regarding family, many hospices were described as allowing more visits (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ), including one prison with family accommodation (Her Majesty's Prison & Probation Service, 2018 ). Whilst re-engaging with family was reportedly encouraged (Brown, 2016 ), a lack of support was noted (Correctional Investigator Canada, 2019 ). Suggested improvements include a family liaison officer, providing a list of counselling options, and hosting memorial services (Her Majesty's Prison & Probation Service, 2018 ).

Social care

A social care strategy for older prisoners and a social care lead for all prisons in England and Wales has been recommended (Department of Health, 2007 ; Prisons and Probation Ombudsman, 2016 ). It was reported that MDTs working with PLiPWD should and increasingly do include social workers including specialist units and hospices (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Social care roles can be found in Table 8 .

The work may be direct or may be through co-ordinating external agencies or peer supporters (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Clarity in these roles was considered paramount, particularly as uncertainty reportedly continues to exist over who is responsible for meeting prisoners’ social care needs in some prisons in England and Wales despite the passing of the Care Act, 2014 (Dementia Action Alliance, 2017 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). There was also some ambiguity around the threshold PLiPWD were expected to meet in order to access social care (Forsyth et al., 2020 ). In some instances, personal care was delivered informally by untrained and unsupported prison staff and peer supporters in lieu of suitably trained social care workers (Treacy et al., 2019 ), with issues raised about the unavailability of social care through the night (Forsyth et al., 2020 ). Where social care staff were involved in coordinating personal care for prisoners, it was reported as positive for prisoners and prison staff (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ), particularly, in one prison, where social care staff were prison-based (Forsyth et al., 2020 ).

Peer supporters

Prisoner peer supporters were operating in a number of prisons, as reported in 22 papers, and their employment was recommended by a further fourteen. Typically, these were people who had ‘good’ disciplinary and mental health records, and certainly in the US, were longer-serving prisoners. A number of papers indicated the need for peer supporters to receive training in dementia, including awareness and support (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Comprehensive 36–40 h training on dementia was delivered for those working on specialist units, including one leading to a qualification (Brooke & Jackson, 2019 ; Brown, 2016 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). Much of the training was developed and delivered by charities, particularly dementia-related ones, as reported in eleven papers. Ongoing support and supervision was offered or recommended by some prisons, provided largely by health or social care staff or charities (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Gaston & Axford, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ), with informal peer-to-peer support also described (Brown, 2016 ; Gaston & Axford, 2018 ; Treacy et al., 2019 ). The support and supervision received was found to be valuable (Brooke & Jackson, 2019 ; Brown, 2016 ; Treacy et al., 2019 ). Peer-supporter roles are listed in Table 9 .

A number of benefits to: (a) the peer supporters, (b) the prisoners they supported and, (c) the prison, were described, although formal evaluations were lacking (Brown, 2016 ; Christodoulou, 2012 ; Department of Health, 2007 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). This included: payment, development of skills which could be used on release, positive impact on progression through the system, and on self-confidence and compassion, and the creation of a more humane environment. However, frustration and distress amongst peer supporters largely when untrained and unsupported was also reported (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Inspector of Custodial Services, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ), and concerns raised in relation to an over-reliance on peers to do work that it is the statutory duty of health and social care to provide (Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). This was a particular problem in light of personal care being prohibited for peer supporters in England and Wales (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). It is also of note that the role of peer supporter may also attract the opprobrium of other prisoners, with reports that they have been seen as ‘snitches’ or ‘dogs’ in some areas (Brown, 2016 ; Goulding, 2013 ). In addition, in some prisons, the peer supporter role was not advocated due to: fear of litigation; fear of replacing staff with peers; belief that people should be acquiring more transferable skills, since many would be unable to undertake care work in the community due to their offence history (Brown, 2016 ; Goulding, 2013 ).

Accommodation

There were mixed views regarding accommodation for PLiPWD. A continuum of prison accommodation was suggested from independent to 24-h care (including assisted living) (Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Williams et al., 2012 ). A number of papers ( n  = 18) recommended that there should be some form of alternative, more appropriate accommodation developed, potentially regional, including secure facilities possibly with a palliative orientation (Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Sfera et al., 2014 ). However, there were concerns about the availability, costs and staffing of specialist units, and distances that family would have to travel to visit despite potential benefits (du Toit et al., 2019 ; Moore & Burtonwood, 2019 ). It was also suggested that PLiPWD should be released to live in the community instead (Correctional Investigator Canada, 2019 ).

Within prisons, there was a debate evident within the papers about whether PLiPWD should be accommodated in separate units or integrated within the general prison population, which had generated little clear evidence and mixed views (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). Authors have suggested that specialist or separate wings focused on older people or those with dementia were safer, met peoples’ needs better, and offered better care, support and programmes than integrated units (Brown, 2014 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Goulding, 2013 ; Maschi et al., 2012 ; Murray, 2004 ; Treacy et al., 2019 ; Williams et al., 2012 ), as long as they were ‘opt-in’ for prisoners and staff (Correctional Investigator Canada, 2019 ; Moll, 2013 ; Treacy et al., 2019 ; Williams et al., 2012 ), and opportunities to get off the wing to socialise with others are provided (Treacy et al., 2019 ). The types of ‘specialist’ accommodation that PLiPWD were living in are reported in Table 10 . It is of note that papers reported a highly limited number of beds available in specialist units (Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ; Turner, 2018 ), and that a number of older prisoner-specific prisons were being closed due to costs (Turner, 2018 ).

Four papers described the benefits of older people and those PLiPWD residing within the general prison population (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Williams et al., 2012 ). Those living with dementia reported a benefit from socialising with, and being cared for by, younger people (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). The presence of older people also reportedly calmed younger prisoners (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). Importantly, removing people from their prison social networks may have a detrimental effect (Williams et al., 2012 ), and living on specialist units can be stigmatising (Treacy et al., 2019 ).

Regime and activities

The maintenance of prisons regimes is the primary focus of prison officers (Brooke & Jackson, 2019 ). However, there was a reported need ( n  = 19) for PLiPWD to have equal access to activities and services including work, education, gym, library and day centres where they exist, as well as a structured and varied regime on the wing on which they were accommodated, and support to access these. This support could include providing adequate seating (Welsh Government and Ministry of Justice, 2011 ), or giving prisoners more time to accomplish activities, and to assist if needed (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ). Other recommendations included an overall relaxation of regimes (Gaston & Axford, 2018 ; Treacy et al., 2019 ), an ‘open door’ policy (Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ), more visible staff (The King's Fund, 2013 ), and creating a more communal social environment (Christodoulou, 2012 ). On-wing social activities are described in Table 11 .

Having on-wing work available or alternative means for prisoners who are unable to work to make money was also reportedly important (Christodoulou, 2012 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston and Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 , 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Murray, 2004 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). It was suggested that people with dementia should have the chance to work if wanted, and adaptations could be made to work programmes or working days made shorter to facilitate this. Some prisons had specific roles which involved lighter, simple, repetitive tasks such as gardening (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Treacy et al., 2019 ). Day centres existed in some prisons, or were thought to be feasible (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), and it was suggested that attendance at these could constitute meaningful paid activity (Her Majesty's Prison & Probation Service, 2018 ). The centres were largely developed and facilitated by charities, and ran a wide variety of social, therapeutic, recreational, arts and advice-centred activities (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ).

Equal access to educational activities, including rehabilitation and offending behaviour programmes, was highlighted as important, particularly where attendance is needed to facilitate people’s progression through the system (Booth, 2016 ; Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Some prisons provided, or felt there was a need for, particular educational activities for PLiPWD and adaptations may be, or have been, made to learning materials and equipment, content and pace (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Dedicated library sessions have been designated in some prisons, and some libraries can and do stock specialist resources including books, audiobooks, reminiscence packs and archives of local photos, music and DVDs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ;Treacy et al., 2019 ; Williams, 2014 ). Educational materials could and have been available between sessions to aid memory with distance learning also possible (Brooke & Jackson, 2019 ; Her Majesty's Prison & Probation Service, 2018 ). Suggestions for alternatives for PLiPWD focused on activity and stimulation (du Toit & Ng, 2022 ; Gaston, 2018 ; Her Majesty's Prison & Probation Service, 2018 ), preparing for retirement classes (Department of Health, 2007 ), health promotion (Brooke et al., 2018 ; Christodoulou, 2012 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Maschiet al., 2012 ; Murray, 2004 ; Welsh Government and Ministry of Justice, 2011 ), the arts (Brooke & Jackson, 2019 ) and IT classes (Her Majesty's Prison & Probation Service, 2018 ). Prisoner forums or representative could also be consulted regarding regimes and activities (Moll, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Challenges to regimen and activities are described in Table 12 .

Environment

A large number ( n  = 42) of the included papers discussed changes that prisons had made, or should make, to the built environment in order to be more suitable for PLiPWD – in one study in England and Wales, around half of prisons surveyed had made such environmental modifications (Forsyth et al., 2020 ). These focused on: (i) prisoners’ cells, (ii) bathrooms, (iii) dining hall, (iv) outside space and recreation areas, and (v) overall general prison environment (Table 13 ).

Problematically, the age and dementia-inappropriateness of buildings are considered a challenge (Baldwin & Leete, 2012 ; Brown, 2016 ; Dementia Action Alliance, 2017 ; Forsyth et al., 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). Difficulties in navigating prisons where everywhere looks the same (Dementia Action Alliance, 2017 ; Murray, 2004 ; Treacy et al., 2019 ), and the lack of budget (HMP Littlehey, 2016 ; HMP Littlehey, 2016 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ) were also reported issues. It was suggested that the use of dementia-friendly environmental checklists could be useful, potentially with input from occupational therapists, health and social care, and dementia charities and in-house education, work and estates departments (Brown, 2014 ; Christodoulou, 2012 ; Dillon et al., 2019 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Peacock et al., 2018 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). Hope was expressed that newly built prisons would be more dementia-friendly (Dementia Action Alliance, 2017 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

Formal policies and procedures should be in place to help maintain links between family and prisoners, and to foster an understanding of the central importance of families particularly for PLiPWD (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ). Some papers described how prisons could support contact by: giving help and additional time to make telephone calls and arranging visits in quieter spaces (Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ); increasing the number of visits (Jennings, 2009 ); and allowing for accumulated visits or transfers to other prisons for visits closer to home (Her Majesty's Prison & Probation Service, 2018 ). Family communication – additional information can be found in Table 14 .

External organisations

One review suggested that external voluntary agencies were not often contacted or referred to, despite their potential benefits in terms of costs and support for staff and PLiPWDs (du Toit et al., 2019 ). However, other papers reported that charities for PLiPWD, or older people, were involved in (or were recommended to be involved in): designing and/or delivering dementia training; being part of MDTs; informing the design of referral processes, screening, assessment and case finding tools; consulting on environmental design; creating and delivering social care plans (including running activity centres); advice and support; advocacy and; co-facilitating a cognitive stimulation therapy group (Alzheimer’s Society 2018 ; Brooke et al., 2018 ; Brown, 2014 , 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Williams, 2014 ). It was also recommended that external organisations need to have a better knowledge and understanding of prisons and people living in prison, in order to better manage risk, and for clear information sharing protocols (du Toit & Ng, 2022 ).

(iv) Transfers

During the course of their sentence, people in prison may be transferred to other prisons for various reasons or to receive treatment in hospital. The need for MDT transfer plans to be developed was reported (Welsh Government and Ministry of Justice, 2011 ), as was the need to limit the number of prisoner transfers as moving accommodation is likely to have an adverse effect (Her Majesty's Prison & Probation Service, 2018 ; Patterson et al., 2016 ). It was recommended that transfers should take the distance from family and friends into account (Her Majesty's Prison & Probation Service, 2018 ), and that the ‘receiving’ facility (prison or healthcare setting) should be liaised with regarding health and social care, and risk (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) to ensure continuity of care (Cipriani et al., 2017 ). A standard document transfer protocol was also postulated as useful, as documents need to be forwarded quickly as well (Brown, 2016 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). At the receiving facility, it was suggested that assessments and care plans should be reviewed on the day of the transfer (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government, 2014 ), and for re-inductions to be facilitated for prison transfers (Her Majesty's Prison & Probation Service, 2018 ).

(v) Release and resettlement

Most prisoners will be released from prison at the end of their sentence, although a number may die before their time is served. A number of areas were highlighted regarding the release and resettlement of PLiPWD, including the possibility of early release due to dementia.

Early release

A number of papers advocated for compassionate release policies and their actual use, or alternative custodial placements such as halfway houses or secure nursing homes, that would effectively result in the early release of PLiPWD (Brown, 2016 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Pandey et al., 2021 ; Turner, 2018 ; Williams et al., 2012 ). Although, it has also been noted that early release may not be a popular idea for some sections of the community (du Toit et al., 2019 ; Garavito, 2020 ), it was also suggested that raising community awareness of dementia may ameliorate this (du Toit & Ng, 2022 ). It was reported that prisoners with dementia should be considered in any criteria set forth for early release, particularly given the high cost/low risk ratio which they represent (Baldwin & Leete, 2012 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Murray, 2004 ; Williams et al., 2012 ). For prisoners who do not understand the aims of prison, continuing to hold them may be a contravention of human rights and equality laws – particularly where health and social care is inadequate (Baldwin & Leete, 2012 ; Dementia Action Alliance, 2017 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Murray, 2004 ). It was also emphasised that the existence of units and programmes for PLiPWD should not be used to legitimise prison as an appropriate place for PLiPWD (Correctional Investigator Canada, 2019 ). More information can be found in Table 15 .

Resettlement

Ten different areas were identified in the literature which related to the issues PLiPWD leaving prison may face on their release and resettlement into the community, these were:

(a) In-prison release preparation

Specific pre-release programmes or services for older people or those living with dementia may be required (Department of Health, 2007 ; Williams et al., 2012 ), with prisoners being cognitively screened prior to release (Goulding, 2013 ), although the latter was only found in 10% of prisons in one study (Forsyth et al., 2020 ). Other suggestions for programme content included: self-efficacy, health, staving off dementia and associated anxiety, accessing services, addressing institutionalisation, setting up email addresses, and the provision of information packs on national, regional and local services and resources (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

It has been suggested that release plans and transitions be facilitated by an MDT including prisoners, the voluntary sector, offender managers, and other appropriate community-based organisations (du Toit et al., 2019 ; Feczko, 2014 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Recommended plan content included: risk management strategies, health, social care, housing, finance, employment, leisure and voluntary sector considerations (Welsh Government and Ministry of Justice, 2011 ). It was also suggested that Circles of Support and Accountability (CoSA), primarily associated with sex offenders, could be set up for PLiPWD as a means to support those leaving prison and settling back into the community particularly without family support (Her Majesty's Prison & Probation Service, 2018 ).

Challenges to release preparation were identified as: a lack of resources, (Turner, 2018 ) the lack of clarity regarding staff resettlement roles (Inspector of Custodial Services, 2015 ), and the lack of resettlement provision offered at sex offender prisons in England and Wales (Her Majesty's Prison & Probation Service, 2018 ).

A number of papers reported the key role that family and friends can or do play in supporting PLiPWD leaving prison, and that this should be supported or facilitated by prison staff (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ). Initially this could include encouraging diagnosis disclosure (Dillon et al., 2019 ), using prison leave to maintain relationships (Her Majesty's Prison & Probation Service, 2018 ), involvement in discharge planning (Welsh Government and Ministry of Justice, 2011 ), and placing prison leavers close to family upon release and ensuring family are supported (Correctional Investigator Canada, 2019 ; Gaston & Axford, 2018 ). Where PLiPWD lack family, setting up CoSAs as described above may be useful (Her Majesty's Prison & Probation Service, 2018 ).

(c) Probation

It was suggested that probation staff should have training to work with older people, and that some offender managers could specialise in this work (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ). Probation officers or offender managers are or can be involved in resettlement planning, (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), arranging accommodation (Inspector of Custodial Services, 2015 ), liaising with agencies such as health care or social services, checking that PLiPWD are accessing these services and disseminating reports of to-be released prisoners to relevant parties (Department of Health, 2007 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Importantly, the forwarding of important documents to offender managers by the prison should be routine (Department of Health, 2007 ; Moll, 2013 ). It was also recommended that probation staff should visit people in prison before release if they live out of area (Department of Health, 2007 ). The work of probation services was reportedly hampered by limited resources (Brown, 2016 ).

Continuity of care upon release can be difficult, and it was suggested that it could be a role of prison healthcare to ensure this (including registering with the local GP and dentist (Cipriani et al., 2017 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Welsh Government and Ministry of Justice, 2011 ). There appeared to be some differences regarding the distribution of full healthcare reports to offender managers and other appropriate agencies with some prisons sending them, some only if requested, and some not providing them on grounds of confidentiality (Moll, 2013 ). Typically, it was recommended that it was better for to-be released older prisoners if these reports were disseminated (Department of Health, 2007 ). It was also suggested that healthcare staff in prison and from the community form part of multi-disciplinary release planning, and that these plans include health considerations and healthcare staff advice on issues of accommodation (du Toit & Ng, 2022 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ).

(e) Social care

Some papers reported that social workers can and should be involved in the process of resettlement (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ) and release preparation (Goulding, 2013 ). Continuity of social care arranged with the local authority was also recommended (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(f) Accommodation

Release planning should include plans for accommodation, and involve housing agencies or care services in the community in that planning (Welsh Government and Ministry of Justice, 2011 ). Importantly, people in prison may need help in registering for housing, and their homes may be in need of adaptation in response to their health or social care needs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Nursing homes and other care providing facilities were reported to be reluctant to accommodate people who have been in prison (Brown, 2014 ; Brown, 2016 ; Booth, 2016 ; Correctional Investigator Canada, 2019 ; du Toit et al., 2019 ; Gaston, 2018 ; Garavito, 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ). This was described as particularly the case for those who were living with dementia (Brown, 2014 ; Correctional Investigator Canada, 2019 ; Dillon et al., 2019 ), with further issues reported in accommodating those who have committed sex offences (Brown, 2014 , 2016 ; Dillon et al., 2019 ; Garavito, 2020 ; Inspector of Custodial Services, 2015 ). Concerns regarding the safety of other residents and the views of their families, and the rights of victims in general, were cited as reasons behind these placement difficulties (Brown, 2014 ; Goulding, 2013 ) – one paper reported that there had been community protests (Brown, 2016 ).

It was suggested that prisons need to build better relationships with care providers in the community, which had reportedly been forged by some (Brown, 2016 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ), and that they could also provide education and support to these services (Booth, 2016 ). However, it was also noted that there may be a need for specialist residential units to be created in the community for people released from prison with dementia (Inspector of Custodial Services, 2015 ), with an example of a state-run facility for ex-prisoners in the United States (Goulding, 2013 ), and particular attention for younger ex-prisoners with dementia (Brown, 2014 ). A number of papers reported that if accommodation could not be arranged for people, this largely resulted in them remaining in prison until it was (Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Peacock et al., 2018 ; Soones et al., 2014 ).

(g) Finance

Imprisonment likely leads to a loss of income, meaning that older prisoners who may have served more lengthy sentences are likely to be poorer, particularly if unable to work in prison (Baldwin & Leete, 2012 ; Gaston, 2018 ). Therefore, it was suggested that release planning ought to include issues of finance (Welsh Government and Ministry of Justice, 2011 ). Given that it has been suggested that people in prison should be given advice on pensions and welfare benefits, and help to arrange these (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), addressing this would seem to be an area of particular use for older people leaving prison who may have additional problems in these areas, and for those who may need assistance in arranging their financial affairs because of their deteriorating health problems.

(h) Employment and education

People’s employment prospects are likely to be impacted upon release from prison, particularly for older people who may have served long sentences (Gaston, 2018 ). Where appropriate, it was recommended that release planning should include issues around employment (Welsh Government and Ministry of Justice, 2011 ), that information packs for people should include sections on education and employment, and that it could be useful to help people make links with the Department for Work and Pensions (Her Majesty's Prison & Probation Service, 2018 ).

(i) Leisure

Leisure activities and resources could be considered in release planning, and included in pre-release information packs for prisoners (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(j) Charities and voluntary sector organisations

It was recommended in a number of papers that charity and voluntary sector organisations working with PLiPWD be involved in release planning (Department of Health, 2007 ; du Toit et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), continuity of care (Moll, 2013 ), and in providing support during the transition and after (du Toit & Ng, 2022 ; Welsh Government and Ministry of Justice, 2011 ). It was also suggested that in general it would be useful for PLiPWD to have contact with these organisations (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ), and that they may be well-placed to develop information packs for prisoners on release regarding local amenities, services and resources (Her Majesty's Prison & Probation Service, 2018 ).

(vi) Cross-cutting themes

Eight more generalised concerns were also described which had a clear impact on the passage of PLiPWD through prison, on release and resettlement in the community, and on the issues raised thus far in the review.

Principles-philosophy

The principles suggested to underpin the support of PLiPWD are that it should be person-centred, holistic, adhere to human rights and dignity principles, proactive, health promoting, and enabling – making choices but supported if needed (Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Mackay, 2015 ; Maschi et al., 2012 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ). Conversely, clashes in philosophies between prison staff, and health and social care staff have been reported with security trumping care in many cases, which can have a negative impact (du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Mackay, 2015 ; Murray, 2004 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ; Williams, 2014 ). It was suggested that positioning dementia as more than just a health issue and fostering a whole-prison care-custody model or approach, with clearly defined roles for ‘care’ and ‘custody’, may be useful in resolving this (du Toit & Ng, 2022 ; Public Health England, 2017b ; Welsh Government and Ministry of Justice, 2011 ).

A number of papers ( n  = 15) reported that budget and resource limitations had a variety of negative impacts including difficulties in providing: appropriate assessment, support and accommodation to PLiPWD; specialist accommodations, plans for which were then curtailed; delivering programmes and activities; healthcare cover; and, staff training (Booth, 2016 ; Christodoulou, 2012 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Dillon et al., 2019 ; du Toit et al., 2019 ; du Toit & Ng, 2022 ; Goulding, 2013 ; HMP Hull, 2015 ; Jennings, 2009 ; Mackay, 2015 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; Pandey et al., 2021 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Treacy et al., 2019 ; Turner, 2018 ). Ultimately, lack of resources has reportedly led to a system that is not able to cope appropriately with PLiPWD (Moll, 2013 ; Williams et al., 2012 ; Wilson & Barboza, 2010 ), with associated problems transferring out of the prison system into probation and care systems when people are released (Williams et al., 2012 ).

It has been suggested that PLiPWD in prison should be treated as if they have capacity to make decisions such as giving or withholding consent for treatment, unless it is proven otherwise. This is consistent with legislation such as the Mental Capacity Act (Prisons and Probation Ombudsman, 2016 ). It has been recommended that healthcare staff should conduct capacity assessments if there are concerns (National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), and be trained to do so (Maschi et al., 2012 ; Welsh Government, 2014 ). It is of note that an ombudsman report showed that PLiPWD who died lacked access to mental capacity assessments (Peacock et al., 2018 ). For PLiPWD, who are likely to lack capacity as their condition progresses, early education about, and development of, advance directives has been advocated (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ), and staff should be trained on this (Maschi et al., 2012 ). It has also been suggested that family members, independent mental capacity advocates or healthcare proxies could or should be used for PLiPWD who lack capacity in making care, welfare and financial decisions (Brown, 2016 ; Soones et al., 2014 ), supported by legislation and oversight, as opposed to prison or healthcare staff making decisions (Correctional Investigator Canada, 2019 ).

The issue of ‘risk’ related to PLiPWD revolves around four areas: (i) assessment, (ii) management, (iii) disciplinary procedures, and (iv) safeguarding. Full details can be found in Table 16 .

There were a number of additional facets to risk concerns regarding PLiPWD described in the papers. There were concerns that the lack of understanding of the impact of dementia on people’s behaviour could ultimately lead to people being held in prison for longer periods on account of seemingly transgressive or aggressive behaviour that could in fact be related to their dementia difficulties (Dementia Action Alliance, 2017 ; Mistry & Muhammad, 2015 ; Treacy et al., 2019 ). In one study, a prisoner with dementia was transferred to another prison because staff felt that they were ‘grooming’ an officer (Treacy et al., 2019 ), likely lengthening their overall prison stay. There was also a recurring issue in fatal incidents investigations in England and Wales of prisoners being restrained whilst dying in hospital, a practice described as unnecessary in light of their likely frail state (Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ). One paper suggested linking future accommodation options and considerations for Release on Temporary Licence to a PLiPWD’s risk of reoffending, as well as the severity of their symptoms (Forsyth et al., 2020 ). Moore and Burtonwood ( 2019 ) also observed that a lack of risk assessment protocols was a barrier to release of PLiPWD., and as Table 16 suggests, a comprehensive risk assessment, applied by appropriately trained staff should make health and its impact on future offending more salient to aid this.

There were recommendations that PLiPWD should have the opportunity to make choices in their treatment and care. This included input into care plans or making informed decisions about their care (Department of Health, 2007 ; du Toit & Ng, 2022 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), as well as developing advance directives particularly early in a person’s sentence (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Pandey et al., 2021 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ), and choosing ‘preferred’ places to die (Her Majesty's Prison & Probation Service, 2018 ).

Protected characteristics

There was a reported need for culturally appropriate assessments, treatment and activities (Brooke et al., 2018 ; Department of Health, 2007 ; Hamada, 2015 ; Welsh Government and Ministry of Justice, 2011 ), spiritual support (Welsh Government and Ministry of Justice, 2011 ), multilingual information (Welsh Government and Ministry of Justice, 2011 ), and the recognition of gender differences in dementia healthcare needs (Brown, 2014 ; Department of Health, 2007 ; Williams et al., 2012 ). It was also highlighted that racism makes the experience of living with dementia in prison more problematic (Brooke et al., 2018 ; Brown, 2014 ; Correctional Investigator Canada, 2019 ). There were some examples of policy and practice within prisons which considered some protected characteristics: assessment tools in different languages (Patterson et al., 2016 ), additional support for PLiPWD to plan care (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and the development of culturally appropriate care planning (Hamada, 2015 ). Hamada ( 2015 ) also advocated assessment and treatment that was culturally ‘competent’ and respectful, and which acknowledged the importance of culture and diversity.

An overall need to tackle dementia- and age-related stigma was also reported in some papers, and the need to foster cultures that are age-respectful should be reflected in staff training (Department of Health, 2007 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), In addition, practices which openly discriminate such as the lack of: dedicated dementia resources (Turner, 2018 ), appropriate lower category prison places (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and appropriate accommodation on release, which at times prevents release, should also be challenged (Correctional Investigator Canada, 2019 ; Forsyth et al., 2020 ; Ministry of Justice, 2013 ; Prisons and Probation Ombudsman, 2016 ). There was also a lack of research into the interaction between protected characteristics and dementia in prison (Brooke & Jackson, 2019 ; Treacy et al., 2019 ; Williams et al., 2012 ).

Collaboration

Many papers advocated the need for prisons and specialist dementia units to adopt a collaborative MDT approach drawing from staff teams across the prison regarding: the identification and support of prisoners with dementia, care planning, the disciplinary process, the development, dissemination and implementation of policy, and in environmental change and the building of new prisons (Brooke et al., 2018 ; Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; The King’s Fund 2013 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 , 2014 ; Williams, 2014 ). There were examples of prisoners collaborating with staff in the care of PLiPWD as peer supporters, and having joint staff-prisoner supervision and training (Brooke & Jackson, 2019 ), of joint staff-prisoner wing meetings in one prison (Treacy et al., 2019 ), and of the co-designing of services and activities in others (Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). It was suggested that this collaborative way of working should be supported by an information sharing protocol, clear definitions of staff and peer supporter roles and responsibilities, and training (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; HMP Littlehey, 2016 ; Turner, 2018 ). It was reported that there had been a lack of communication and coordination of this process in some prisons which had a negative impact on all involved (Brooke & Rybacka, 2020 ; Forsyth et al., 2020 ; Moll, 2013 ; Prisons and Probation Ombudsman, 2016 ).

It was also suggested that the prisons collaborate with healthcare, hospice and dementia specialists in the community and with external charitable organisations (Brooke et al., 2018 ; Brown, 2014 ; Cipriani et al., 2017 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Williams, 2014 ). In addition, inter-prison networks were recommended to be developed to share good practice across prisons (Dementia Action Alliance, 2017 ; Moll, 2013 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ).

Information-sharing

A number of papers ( n  = 7) recommended the need for a clear information sharing protocol regarding the assessment and support of PLiPWD (Brooke et al., 2018 ; Dillon et al., 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Moll, 2013 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ), or a register (Forsyth et al., 2020 ). Particular attention to the interface between healthcare and prison staff and peer supporters was suggested, where it has been reported that privacy regulations have sometimes prevented contributions to collateral histories (Feczko, 2014 ) and the sharing of care plans, impairing their ability to offer appropriate support (Inspector of Custodial Services, 2015 ). Also, it may be against the wishes of the person with dementia, and informed consent should be sought (Forsyth et al., 2020 ; Moll, 2013 ). This lack of information can have a detrimental effect on a person’s health and wellbeing (Brown, 2014 , 2016 ; Feczko, 2014 ; Inspector of Custodial Services, 2015 ), and so discussion of this was highlighted as important, particularly where the safety of the person or others were concerned (National Institute for Health and Care Excellence, 2017 ). A care plan which gives only very basic information to staff and peer supporters was used in a couple of prisons (Goulding, 2013 ; Williams, 2014 ).

There also appeared to be variance with respect to whether healthcare staff disclose a dementia diagnosis to the person diagnosed with dementia. A couple of prisons’ policy was to share a diagnosis and involve family in doing so (Maschi et al., 2012 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ), however, in one prison disclosed if a person was judged to be able to cope with it, and another only disclosed if asked (Brown, 2016 ). The importance of disclosure to family allowing them to contribute to assessments, planning and support was also emphasised in some papers (Brown, 2016 ; Dillon et al., 2019 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ).

This review has explored the literature regarding all parts of the custodial process and its impact on people living in prison with cognitive impairment and dementia, which includes: reception, assessment, allocation, training, policy, healthcare, accommodation, adaptation, routine, access to family and external agencies, transfer and resettlement. We found evidence that problems had been identified in each of these parts of the process. We also identified a number of cross-cutting themes which interacted with the issues identified across the prison journey including: principles or philosophy regarding care; capacity; resources; considerations of risk; scope for choice; peoples’ protected characteristics; collaboration; and, information sharing. Broadly, our findings were similar to those found in previous reviews, regarding the problems with the prison process identified, and the lack of robust outcomes, and policy guidance regarding PLiPWD (Brooke and Rybacka, 2020 ; Peacock et al., 2019 ).

The aim of this review was to identify areas of good practice and for recommendations that could inform the development of prison dementia care pathways. There is a considerable breadth to the findings, but the main recommendations that have arisen from the review are:

To screen prisoners for cognitive difficulties at reception, from either 50 or 55 years

An initial older-person specific health and social care assessment, post-screening – from either 50 or 55 years, and repeated (from 3 – 12 months)

A spectrum of healthcare to be delivered including preventative, long-term and palliative care, with continuity of care upon release, and in tandem with social care

Mixed views about appropriate accommodation, but it needs to run along a continuum from independent living to 24-h care, with decisions possibly made after health assessments

Environments need to be made more older-person or dementia friendly, using checklists available, and with the voluntary sector as potential partners

A need for prison staff training on dementia, and further training for healthcare staff

The use of peer supporters was broadly reported positively, and were seemingly frequently used. However, there needs to be adequate training and support, and not to be used to do the work that is the statutory duty of health and social care staff

Equal access to activities and services, especially programmes which help people move through the system (such as offending behaviour), as well as opportunities to earn additional monies, and that provide structure and routine on wings

The maintenance of family links, and for families to be supported, are important for PLiPWD, and may be particularly so on release and resettlement

Prisons may also need to work with external care agencies to ensure placements upon release, or alternative specialist care facilities may need to be created

The main barriers to implementing these recommendations are a lack of policy or guidance at local, regional and national levels to support staff in working with PLiPWD, and also the lack of budget and resources available. The latter would also include infrastructure issues, such that a number of prisons are not appropriate for people living with dementia, and could be expensive to modify to become so, coupled with a lack of currently available alternative facilities for PLiPWD to be released to in the community. The lack of use of compassionate release is also an issue here, including during the COVID-19 pandemic, with only 54 people released (Halliday & Hewson, 2022 ). Lastly, the roles that each professional and peer group had regarding PLiPWD needed clarification in some prisons, including some resolution of the ‘clash’ of philosophies (control v care) underpinning this.

In terms of ‘solutions’, multiple organisations have advocated for years for the need for national policy to assist prisons with older people in prison, including those living with dementia (Cornish et al., 2016 ; HM Inspectorate of Prisons, 2004 , 2019 ; Prisons & Probation Ombudsman, 2016 , 2017 ). This was eventually accepted and commissioned by the UK government, although it has not been released as yet (Justice Committee, 2020 ). It has also been suggested that at a more local level, existing policies could be adapted to be more appropriate for PLiPWD – such as restraint policies for frail prisoners, and disciplinary procedures which reflect the impact that dementia may have on behaviour (Department of Health, 2007 ; Treacy et al., 2019 ). Considerations around capacity and consent would need to be weaved in, as well as a focus on the intersection with other protected characteristics. These adaptations would also need to extend to services and activities to ensure that people have equal access and opportunities. A number of reports highlighted the contribution that greater collaboration with partners in external health and social care teams could have, as well as partnerships with the voluntary sector. These could potentially assist in multiple areas including training staff and peer supporters, providing activities, assisting release preparation, at a relatively low cost, to high benefit. There were some recommendations that prisons adopt a whole-prison approach to dementia that focuses on being person-centred, health and human rights focused that may help to ameliorate some differences in philosophical approach between various staff and peer groups in prisons.

A number of potential areas for future research were also indicated by the literature, which would also support the development of prison pathways. These would include: (i) induction to prison, and (ii) release and resettlement from prison, which are important beginning and end-points, but which are under-researched; (iii) the validation of a screening tool for use in prisons, and the development or adaptation of prison-specific health and social care assessments; (iv) the interaction of protected characteristics and dementia, and the need for more culturally and gender aware pathways; (v) the paucity of research conducted in low and middle-income countries, that needs to be addressed; (vi) dementia and age-related stigma in prisons; and (vii) evaluations of all elements of the prison pathway for PLiPWD to undertaken including training, the role of peer supporters, and targeted programmes.

Strengths and limitations of the review

One key strength of this review is its comprehensiveness, particularly as it includes much grey literature. Given the lack of robust evaluation in this area, it was felt that this was necessary to represent the volume of work that has nonetheless taken place. There are, however, a number of limitations of this review. Firstly, despite the use of broad search terms, there may be the possibility that some relevant research was missed, either because of deficiencies in our searches or because of publication bias. Additionally, whilst there are twenty-two guidance and inspection documents included in this review, it is possible that some grey literature might also remain unidentified, particularly outside of the UK where the review was undertaken. Secondly, this review may be subject to a selection bias, as the yielded search results might have included literature that were excluded but which may have indirectly impacted upon the care pathways elements explored in the review. There is also a language bias, and whilst this may reflect the languages spoken by the review team members, it is also reflective of the “northern epistemic hegemony” (Aas, 2012 ), that also may have resulted in the review being largely populated by papers from high income countries. Thirdly, no formal assessment of study quality was undertaken. This is in keeping with scoping review methodology which focuses on breadth, but is nonetheless an important shortcoming inherent in scoping reviews more generally (Arksey & O’Malley, 2005 ).

We have completed the most comprehensive review of the literature on PLiPWD in prisons to date that we have found, including a synthesis of the extensive grey literature, and found important gaps in the literature. Our review includes a mixture of academic research, policy and position papers which identified an increasing number of prisoners with dementia or cognitive impairment as an issue, but there were more limited descriptions of what should be done, and even less describing implementation of these. Most of the literature came from developed nations where extensive assessment and care services are in place for PWD in the community, although a key question is whether prison populations are given easy access to these existing services or whether bespoke services for prisoners are required. We suggest this literature now needs to be drawn together to inform interventions for PLiPWD in the criminal justice system which can be piloted and evaluated, and inform the development of robust dementia care pathways for prisons.

Availability of data and materials

All data and materials used in this review are included in this article and its appendices.

There is no standard cut-off age for older people living in prison, but it is typically set at least ten to fifteen years lower than the general population. People in prison are thought to age more rapidly due to both pre- and post-imprisonment chaotic lifestyles, substance misuse and less healthcare access and use, as well as the ‘pains of imprisonment’. See Williams et al., ( 2012 ) for further discussion.

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Acknowledgements

We would like to thank all the funders for their contributions towards this review. We also would like to thank the key stakeholders, especially the prison advisors and old age psychiatry and care advisors, who contributed towards shaping and contextualising this evidence review.

This is a summary of research which was partly funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England - previously, the Collaboration for Leadership in Applied Health Research and Care East of England – and the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT), as part of the wider prison care programme. The views expressed are those of the author(s).

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Treacy, S., Martin, S., Samarutilake, N. et al. Dementia care pathways in prisons – a comprehensive scoping review. Health Justice 12 , 2 (2024). https://doi.org/10.1186/s40352-023-00252-7

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Digital Transformation in Healthcare: Technology Acceptance and Its Applications

Angelos i. stoumpos.

1 Healthcare Management Postgraduate Program, Open University Cyprus, P.O. Box 12794, Nicosia 2252, Cyprus

Fotis Kitsios

2 Department of Applied Informatics, University of Macedonia, 156 Egnatia Street, GR54636 Thessaloniki, Greece

Michael A. Talias

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Technological innovation has become an integral aspect of our daily life, such as wearable and information technology, virtual reality and the Internet of Things which have contributed to transforming healthcare business and operations. Patients will now have a broader range and more mindful healthcare choices and experience a new era of healthcare with a patient-centric culture. Digital transformation determines personal and institutional health care. This paper aims to analyse the changes taking place in the field of healthcare due to digital transformation. For this purpose, a systematic bibliographic review is performed, utilising Scopus, Science Direct and PubMed databases from 2008 to 2021. Our methodology is based on the approach by Wester and Watson, which classify the related articles based on a concept-centric method and an ad hoc classification system which identify the categories used to describe areas of literature. The search was made during August 2022 and identified 5847 papers, of which 321 fulfilled the inclusion criteria for further process. Finally, by removing and adding additional studies, we ended with 287 articles grouped into five themes: information technology in health, the educational impact of e-health, the acceptance of e-health, telemedicine and security issues.

1. Introduction

Digital transformation refers to the digital technology changes used to benefit society and the healthcare industry. Healthcare systems need to use digital technology for innovative solutions to improve healthcare delivery and to achieve improvement in medical problems. The digital transformation of healthcare includes changes related to the internet, digital technologies, and their relation to new therapies and best practices for better health management procedures. The quality control of massive data collected can help improve patients’ well-being and reduce the cost of services. Digital technologies will also impact medical education, and experts will deceive new ways to train people. Now in this way, practitioners will face new opportunities.

Digital transformation is an ongoing process that can create opportunities in the health sector, provided the necessary infrastructure and training are available. Under Regulation (EU) 2021/694 of the European Parliament and of the Council of 29 April 2021, establishing the Digital Europe Program and repealing Decision (EU) 2015/2240, digital transformation is defined as the use of digital technologies for the transformation of businesses and services. Some technologies that contribute to digital transformation are the digital platform of the Internet of Things, cloud computing and artificial intelligence. At the same time, the sectors of society that are almost affected are telecommunications, financial services and healthcare.

Digital health can play a role in innovation in health, as it facilitates the participation of patients in the process of providing health care [ 1 ]. The patient can overcome his poor state of health when they are no longer in a state of well-being. In this case, the patient is given the to participate in the decision-making regarding their health care. Searching for information through the patient’s internet or using digital health applications (e.g., via mobile phone) is essential for the patient to make the right decision about their health.

In the coming years, health change is expected to focus primarily on the patient, who will take on the “health service consumer” role as the patient seeks control over their health management. The healthcare industry will be shaped based on the needs and expectations of this new “consumer of health services”, which will require upgraded experiences with the main characteristics of personalisation, comfort, speed and immediacy in the provision of services. Gjellebaek C. et al. argue that new digital technologies will shift healthcare towards digitalisation, bringing significant benefits to patients and healthcare infrastructure [ 2 ]. Some of the benefits listed by Gjellebaek C. are the increase in employee productivity, the improvement of the efficiency and effectiveness of the operation of the health units, and the reduction of their operating costs.

On the other hand, in terms of health infrastructure, a typical example is the United States, where 75% of hospitals use electronic health record systems, according to Rebekah E. et al. [ 3 ]. However, clinicians often report side effects using digital technologies, which can be attributed to their misuse [ 3 ]. In addition, some health professionals oppose using these systems and develop solutions that jeopardise patient care. In some countries, such as the United States, the government provides incentives for the “effective use” of e-health technologies, but their results remain uncertain [ 3 ].

Rebekah E. et al. focus more specifically on U.S. hospitals, observing that the remaining countries are relatively in the early stages of transformation [ 4 ]. The United Kingdom, for example, has recently pursued troubled e-health initiatives, and Australian hospitals have only recently participated in investments in the digitalisation of their hospital services [ 4 ]. At the European Union level, digital health is a critical key strategic priority, in line with the European Strategic Plan 2019–2024 (European Commission).

Today, digital transformation in health is spreading and consolidating rapidly [ 5 ]. The purpose of this paper is to provide an assessment of the current literature on digital health transformation, as well as to identify potential vulnerabilities that make its implementation impossible. The ultimate goal is to see how digital technologies facilitate patients’ participation in health and their health.

Due to the rapid development of e-health and digitalisation, data from previous studies are becoming potentially irrelevant. Most studies evaluating digitalisation have relied heavily on quantitative research-based methods. Although quantitative evaluations are required, some of their effects could be omitted.

According to Gopal G. et al., healthcare has the lowest level of digital innovation compared to other industries, such as media, finance, insurance and retail, contributing to limited labour productivity growth [ 6 ]. With this article, we seek to reverse this picture and contribute to the emergence of digitalisation as a factor of health innovation while optimising patient outcomes and the cost of services provided. However, to achieve this innovation, systemic changes are needed in healthcare finances, the education of healthcare staff and healthcare infrastructure.

The following section analyses the methodology and its steps, which then contributed to the emergence of our results.

2. Material and Methods

2.1. search strategy and bibliography reviews.

Our research approach is based on the methodology of Webster and Watson, who developed a concept-centric method and an ad hoc classification system in which categories are used to describe areas of literature [ 7 ]. Initially, the existing bibliographic reviews were searched to select the databases based on keywords. A retrospective search was then performed to examine the reports of the selected works. Finally, the references of selected works were investigated to increase the search sample through the future search. After selecting the articles, they were grouped according to their content.

Systematic reviews were conducted to place this paper on existing knowledge of digital health, as well as to review prior knowledge in this area and to discuss recognised research questions based on the results of previous studies. A comprehensive review of the published literature was reported by Marques, I. C., & Ferreira, J. J. [ 8 ]. The authors explored the potential of existing digital solutions to improve healthcare quality and analysed the emerging trend in digital medicine to evaluate the research question of how stakeholders apply and manage digital technologies for business purposes [ 9 ]. The main question is: How and what could be done sustainably and inclusively through innovation to achieve sustainable development goals by taking advantage of Information and Communication Technologies? Recently, researchers have expressed concern about secure communication and user authentication within providing information to patients. In contrast with data storage, information exchange, and system integration, new approaches and uses of patient care processes are envisaged with the prospect of monitoring not only diagnostic statistics but also in-depth analysis of signs and symptoms before and after treatment, essential sources for new research. Table 1 presents the previous bibliographic reviews on which our study was based.

Previous Bibliographic Reviews.

2.2. Network Analysis

Network analysis is considered a branch of graph theory. Our network analysis is based on the similarity of keywords found in identifying the eligible papers. We used visualisation of similarities (VOS) software, version 1.6.18, to construct graphical networks to understand the clustering of the keywords and their degree of dissimilarity. Our network analysis is based on the similarity of keywords found in identifying the eligible papers.

Initial Search

The search was performed on the following databases: Scopus, Science Direct, and PubMed, using the keywords “digital transformation”, “digitalisation”, “Ehealth or e-health”, “mhealth or m-health”, “healthcare” and “health economics”. We selected publications from the search of international journals and conference proceedings. We collected papers from 2008 until 2021. The documents sought belonged to strategy, management, computer science, medicine, and health professions. Finally, the published works were in English only. The total number of articles collected using the keywords as shown in Table 2 was 5847.

Search Strategy.

We systematically checked the total number of papers 5847 by reading their titles, abstracts, and, whenever necessary, the article’s first page to conclude if each document was relevant as a first step as shown in the Figure 1 .

The diagram for the first phase of the selection process.

Then, we looked at the titles of the 378 articles, and after reading their summary, we accepted 321 articles. Further studies were rejected because their full text was not accessible. As a result, there were 255 articles in our last search. Of the selected 255 articles, 32 more were added based on backward and forward research. The investigation was completed by collecting common standards from all databases using different keyword combinations. According to the systematic literature review, we follow the standards of Webster and Watson (2002) to reject an article. Since then, we have collected the critical mass of the relevant publications, as shown in Figure 2 .

The diagram of the article selection process.

3.1. Chronological Development of the Publications

The categorisation of the articles was based on their content and the concepts discussed within them. As a result, we classify articles into the following categories: information technology in health, the educational impact on e-health, the acceptance of e-health, telemedicine, and e-health security.

Although researchers in Information and Communication Technology and digitalisation conducted studies almost two decades ago, most publications have been published in the last eight years. This exciting finding highlights the importance of this field and its continuous development. Figure 3 shows a clear upward trend in recent years. More specifically, the research field of Information and Communication Technology, in combination with digital transformation, appeared in 2008. However, the most significant number of articles was found in 2019, 2020 and 2021. The number of articles decreased to the lowest in 2009–2011 and 2013–2014. Due to the expansion of the field to new technologies, the researchers studied whether the existing technological solutions are sufficient for implementing digital transformation and what problems they may face.

Number of articles and citations per publication by year.

Figure 3 shows a combination of the articles per year and the number of citations per publication per year.

3.2. Document Type

Of the document types, 59.51 per cent of the articles were categorised as “survey”, while a smaller percentage were in: “case study” (32.53%), “literature review” (5.88%) and “report” (2.08%). However, these documents focused on specific concepts: “information technology in health” (45%), “education impact of e-health” (11%), “acceptance of e-health” (19%), “telemedicine” (7%), “security of e-health” (18%).

As we can see from the following Figure 4 , we used network analysis, where the keywords related to digitalisation and digital transformation were identified in the research study. Network analysis, using keywords, came with VOSviewer software to find more breadth and information on healthcare digitalisation and transformation exploration. It was created by analysing the coexistence of keywords author and index. This analysis’s importance lies in the structure of the specific research field is highlighted. In addition, it helped map the intellectual structure of scientific literature. Keywords were obtained from the title and summary of a document. However, there was a limit to the number of individual words. The figure represents a grid focused on reproducing keywords in the literature on the general dimensions of digitalisation. The digitalisation network analysis showed that e-health, telemedicine, telehealth, mobile health, electronic health/medical record, and information systems were the main relevant backgrounds in the literature we perceived. In the healthcare literature, keywords such as “empowerment” and “multicenter study” usually do not lead to a bibliographic search on digitalisation. Figure 4 shows how e-health and telemedicine have gone beyond the essential and most crucial research framework on how they can affect hospitals and the health sector. The potentially small gaps in network analysis can be filled by utilising data in our research study, contributing to future research.

Bibliometric map of the digital transformation and healthcare.

Figure 5 shows the network analysis with the keywords concerning time publication. The yellow colour indicates keywords for most recent years.

Network visualisation of keywords per year.

Figure 6 presents the density visualisation of keywords.

Heat map of keywords.

Figure 7 shows the number of articles per each method (survey, literature review etc.) for each year.

The map of number of articles per method for each year.

It is evident from Figure 7 that the most used method paper is the survey type and that in the year 2021, we have a high number of surveys compared to previous years.

3.3. Summary of the Included Articles

In Figure 2 , we have explained how we collected the critical mass of the 255 relevant publications. We added another 32 articles based on further research with the backward and research methods, which resulted in a total number of 287 articles.

Then, the articles were categorised according to their content. The concepts discussed in the papers are related to information technology in health, the educational impact of e-health, the acceptance of e-health, telemedicine, and e-health security. For this purpose, the following table was created, called the concept matrix table.

4. Concept Matrix

In this section, we provide the Concept matrix table. Academic resources are classified according to if each article belongs or not to any of the five concepts shown in Table 3 .

Concept Matrix Table.

5. Analysis of Concepts

From the articles included in the present study between 2008 and 2021, they were grouped into five categories identified: (i) information technology in health, (ii) acceptance of e-health, (iii) telemedicine, (iv) security of e-health, and (v) education impact of e-health.

5.1. Information Technology in Health

Researchers have studied several factors to maximise the effectiveness and success of adopting new technology to benefit patients. Hospitals can benefit from information technology when designing or modifying new service procedures. Health units can use information and communication technology applications to analyse and identify patients’ needs and preferences, enhancing their service innovation processes. Previous findings conclude that technological capability positively influences patient service and innovation in the service process [ 301 ]. These results have significant management implications as managers seek to increase technology resources’ efficiency to achieve patient-centred care as the cornerstone of medical practice [ 207 ].

Informatics facilitates the exchange of knowledge necessary for creating ideas and the development process. The internet supports health organisations in developing and distributing their services more efficiently [ 206 ]. Also, Information Technology improves the quality of services, reduces costs, and helps increase patient satisfaction. As new technologies have created opportunities for companies developing high-tech services, healthcare units can increase customer value, personalise services and adapt to their patient’s needs [ 209 ]. To this end, the “smart hospitals” should represent the latest investment frontiers impacting healthcare. Their technological characteristics are so advanced that the public authorities need know-how for their conception, construction, and operation [ 228 ].

A new example is reshaping global healthcare services in their infancy, emphasising the transition from sporadic acute healthcare to continuous and comprehensive healthcare. This approach is further refined by “anytime and everywhere access to safe eHealth services.” Recent developments in eHealth, digital transformation and remote data interchange, mobile communication, and medical technology are driving this new paradigm. Follow-up and timely intervention, comprehensive care, self-care, and social support are four added features in providing health care anywhere and anytime [ 289 ]. However, the healthcare sector’s already precarious security and privacy conditions are expected to be exacerbated in this new example due to the much greater monitoring, collection, storage, exchange, and retrieval of patient information and the cooperation required between different users, institutions, and systems.

The use of mobile telephony technologies to support health goals contributes to the transformation of healthcare benefits worldwide. The same goes for small and medium-sized healthcare companies, such as pharmacies. A potent combination of factors between companies and customers is the reason for creating new relationships. In particular, mobile technology applications represent new opportunities for integrating mobile health into existing services, facilitating the continued growth of quality service management. Service-based, service-focused strategies have changed distribution patterns and the relationship between resellers and consumers in the healthcare industry, resulting in mobile health and significant pharmacy opportunities. It has been an important research topic in the last decade because it has influenced and changed traditional communication between professionals and patients [ 211 ]. An example of a mobile healthcare platform is “Thymun”, designed and developed by Salamah et al. aiming to create intelligent health communities to improve the health and well-being of autoimmune people in Indonesia [ 225 ].

5.2. Acceptance of E-Health

In a long-term project and a population study (1999–2002), Hsu et al. evaluated e-health usage patterns [ 302 ]. The authors conclude that access to and use of e-health services are rapidly increasing. These services are more significant in people with more medical needs. Fang (2015) shows that scientific techniques can be an essential tool for revealing patterns in medical research that could not be apparent with traditional methods of reviewing the medical literature [ 303 ]. Teleradiology and telediagnosis, electronic health records, and Computer-Aided Diagnosis (CAD) are examples of digital medical technology. France is an example of a country that invests and leads in electronic health records, based on what is written by Manard S. et al. [ 243 ]. However, the impact of technological innovation is reflected in the availability of equipment and new technical services in different or specialised healthcare sectors.

On the other hand, Mariusz Duplaga (2013) argues that the expansion of e-health solutions is related to the growing demand for flexible, integrated and cost-effective models of chronic care [ 304 ]. The scope of applications that can support patients with chronic diseases is broad. In addition to accessing educational resources, patients with chronic diseases can use various electronic diaries and systems for long-term disease monitoring. Depending on the disease and the symptoms, the devices used to assess the patient’s condition vary. However, the need to report symptoms and measurements remains the same. According to Duplaga, the success of treatments depends on the patient’s involvement in monitoring and managing the disease. The emphasis on the role of the patient is parallel to the general tendency of people and patients to participate in decisions made about their health. Involving patients in monitoring their symptoms leads to improved awareness and ability to manage diseases. Duplaga argues that the widespread use of e-health systems depends on several factors, including the acceptance and ability to use information technology tools, combined with an understanding of disease and treatment.

Sumedha Chauhan & Mahadeo Jaiswal (2017) are on the same wavelength. They claim that e-health applications provide tools, processes and communication systems to support e-health practices [ 305 ]. These applications enable the transmission and management of information related to health care and thus contribute to improving patient’s health and physicians’ performance. The human element plays a critical role in the use of e-health, according to the authors. In addition, researchers have studied the acceptance of e-health applications among patients and the general public, as they use services such as home care and search for information online. The meta-analysis they use combines and analyzes quantitative findings of multiple empirical studies providing essential knowledge. However, the reason for their research was the study of Holden and Karsh (2010) [ 306 ].

To provide a comprehensive view of the literature acceptance of e-health applications, Holden and Karsh reviewed 16 studies based on healthcare technology acceptance models [ 306 ]. Findings show them that the use and acceptance of technological medical solutions bring improvements but can be adopted by those involved in the medical field.

5.3. Telemedicine

On the other hand, telemedicine is considered one of the most important innovations in health services, not only from a technological but also from a cultural and social point of view. It benefits the accessibility of healthcare services and organisational efficiency [ 215 ]. Its role is to meet the challenges posed by the socio-economic change in the 21st century (higher demands for health care, ageing population, increased mobility of citizens, need to manage large volumes of information, global competitiveness, and improved health care provision) in an environment with limited budgets and costs. Nevertheless, there are significant obstacles to its standardisation and complete consolidation and expansion [ 300 ].

At present, there are Telemedicine centres that mediate between the patient and the hospital or doctor. However, many factors make this communication impossible [ 300 ]. Such factors include equipment costs, connectivity problems, the patient’s trust or belief in the system or centre that applies telemedicine, and resistance to new and modern diagnostics, especially in rural and island areas. Therefore, telemedicine would make it easier to provide healthcare systems in remote areas than having a specialist in all the country’s remote regions [ 300 ]. Analysing the concept further, one can easily argue that the pros outweigh the disadvantages. Therefore, telemedicine must be adopted in a concerted effort to resolve all the obstacles we are currently facing. Telemedicine centres and services such as teleradiology, teledermatology, teleneurology, and telemonitoring will soon be included. This means that a few years from now, the patient will not have to go to a central hospital and can benefit remotely from the increased quality of health services. This will save valuable time, make good use of available resources, save patient costs, and adequately develop existing and new infrastructure.

In 2007, the World Health Organisation adopted the following broad description of telemedicine: “The delivery of health care services, where distance is a critical factor, by all health care professionals using information and communication technologies for the exchange of valid information for the diagnosis, treatment and prevention of disease and injuries, research and evaluation, and for the continuing education of health care providers, all in the interests of advancing the health of individuals and their communities ” [ 307 ]

According to the Wayback Machine, Canadian Telehealth Forum, other terms similar to telemedicine are telehealth and e-health, which are used as broader concepts of remote medical therapy. It is appropriate to clarify that telemedicine refers to providing clinical services. In contrast, telehealth refers to clinical and non-clinical services, including education, management and research in medical science. On the other hand, the term eHealth, most commonly used in the Americas and Europe, consists of telehealth and other elements of medicine that use information technology, according to the American Telemedicine Association [ 308 ].

The American Telemedicine Association divides telemedicine into three categories: storage-promotion, remote monitoring, and interactive services. The first category includes medical data, such as medical photographs, cardiograms, etc., which are transferred through new technologies to the specialist doctor to assess the patient’s condition and suggest the appropriate medication. Remote monitoring allows remote observation of the patient. This method is used mainly for chronic diseases like heart disease, asthma, diabetes, etc. Its interactive services enable direct communication between the patient and the treating doctor [ 309 ].

Telemedicine is a valuable and efficient tool for people living or working in remote areas. Its usefulness lies in the health access it provides to patients. In addition, it can be used as an educational tool for learning students and medical staff [ 310 ].

Telemedicine is an open and constantly evolving science, as it incorporates new technological developments and responds to and adapts to the necessary health changes within societies.

According to J.J. Moffatt, the most common obstacles to the spread of telemedicine are found in the high cost of equipment, the required technical training of staff and the estimated time of a meeting with the doctor, which can often be longer than the use of a standard doctor [ 311 ]. On the other hand, the World Health Organisation states that telemedicine offers excellent potential for reducing the variability of diagnoses and improving clinical management and the provision of health care services worldwide. The World Health Organisation claims, according to Craig et al. and Heinzelmann PJ, that telemedicine improves access, quality, efficiency and cost-effectiveness [ 312 , 313 ]. In particular, telemedicine can help traditionally under-served communities by overcoming barriers to the distance between healthcare providers and patients [ 314 ]. In addition, Jennett PA et al. highlight significant socio-economic benefits for patients, families, health professionals and the health system, including improved patient-provider communication and educational opportunities [ 315 ].

On the other hand, Wootton R. argues that telemedicine applications have achieved different levels of success. In both industrial and developing countries, telemedicine has yet to be used consistently in the healthcare system, and few pilot projects have been able to be maintained after the end of their initial funding [ 316 ].

However, many challenges are regularly mentioned and responsible for the need for more longevity in many efforts to adopt telemedicine. One such challenge is the complexity of human and cultural factors. Some patients and healthcare workers resist adopting healthcare models that differ from traditional approaches or home practices. In contrast, others need to have the appropriate educational background in Information and Communication Technologies to make effective use of telemedicine approaches [ 314 ]. The need for studies documenting telemedicine applications’ economic benefits and cost-effectiveness is also a challenge. Strong business acumen to persuade policymakers to embrace and invest in telemedicine has contributed to a need for more infrastructure and program funding [ 312 ]. Legal issues are also significant obstacles to the adoption of telemedicine. These include the need for an international legal framework that allows health professionals to provide services in different jurisdictions and countries. Furthermore, the lack of policies governing data confidentiality, authentication and the risk of medical liability for health professionals providing telemedicine services [ 314 ]. In any case, the technological challenges are related to legal issues. In addition, the systems used are complex, and there is a possibility of malfunction, which could cause software or hardware failure. The result is an increase in patient morbidity or mortality as well as the liability of healthcare providers [ 317 ].

According to Stanberry B., to overcome these challenges, telemedicine must be regulated by definitive and comprehensive guidelines, which are ideally and widely applied worldwide [ 318 ]. At the same time, legislation must be enacted governing health confidentiality, data access, and providers’ responsibility [ 314 ].

5.4. Security of eHealth

The possibility of the patients looking at the electronic patient folder in a cloud environment, through mobile devices anytime and anywhere, is significant. On the one hand, the advantages of cloud computing are essential, and on the other hand, a security mechanism is critical to ensure the confidentiality of this environment. Five methods are used to protect data in such environments: (1) users must encrypt the information before storing it; (2) users must transmit information through secure channels; (3) the user ID must be verified before accessing data; (4) the information is divided into small portions for handling and storage, retrieved when necessary; (5) digital signatures are added to verify that a suitable person has created the file to which a user has access. On the other hand, users of these environments will implement self-encryption to protect data and reduce over-reliance on providers [ 210 ].

At the same time, Maliha S. et al. [ 227 ] proposed the blockchain to preserve sensitive medical information. This technology ensures data integrity by maintaining a trace of control over each transaction. At the same time, zero trusts provide that medical data is encrypted and that only certified users and devices interact with the network. In this way, this model solves many vulnerabilities related to data security [ 227 ]. Another alternative approach is the KONFIDO project, which aims at the safe cross-border exchange of health data. A European H2020 project aims to address security issues through a holistic example at the system level. The project combines various cutting-edge technologies in its toolbox (such as blockchain, photonic Physical Unclonable Functions, homomorphic encryption, and trusted execution) [ 234 ]. Finally, Coppolino L. et al. [ 271 ] proposed using a SIEM framework for an e-healthcare portal developed under the Italian National eHealth Net Program. This framework allows real-time monitoring of access to the portal to identify potential threats and anomalies that could cause significant security issues [ 271 ].

5.5. Education Impact of E-Health

But all this would only be feasible with the necessary education of both users and patients [ 11 ]. As the volume and quality of evidence in medical education continue to expand, the need for evidence synthesis will increase [ 295 ]. On the other hand, Brockers C. et al. argued that digitalisation changes jobs and significantly impacts medical work. The quality of medical data provided for support depends on telemedicine’s medical specialisation and knowledge. Adjustments to primary and further education are inevitable because physicians are well trained to support their patients satisfactorily and confidently in the increasingly complex digitalisation of healthcare. The ultimate goal of the educational community is the closest approach of students to the issues of telemedicine and e-health, the creation of a spirit of trust, and the acceptance and transmission of essential knowledge [ 268 ].

Noor also moved in this direction, seeking to discover the gaps in Saudi education for digital transformation in health [ 248 ]. The growing complexity of healthcare systems worldwide and the growing reliance of the medical profession on information technology for precise practices and treatments require specific standardised training in Information Technology (IT) health planning. Accreditation of core Information Technology (IT) is advancing internationally. Noor A. examined the state of Information Technology health programmes in the Kingdom of Saudi Arabia (KSA) to determine (1) how well international standards are met and (2) what further development is required in the light of recent initiatives of the Kingdom of Saudi Arabia on e-health [ 248 ]. Of the 109 institutions that participated in his research, only a few offered programmes specifically in Health Information Technology. As part of Saudi Vision 2030, Saudi digital transformation was deemed an urgent need. This initiative calls for applying internationally accepted Information Technology skills in education programmes and healthcare practices, which can only happen through greater collaboration between medical and technology educators and strategic partnerships with companies, medical centres and government agencies.

Another study by Diviani N. et al. adds to the knowledge of e-health education, demonstrating how online health information affects a person’s overall behaviour and enhances patients’ ability to understand, live and prepare for various health challenges. The increasing digitalisation of communication and healthcare requires further research into the digital divide and patients’ relationships with health professionals. Healthcare professionals must recognise the online information they seek and engage with patients to evaluate online health information and support joint healthcare-making [ 235 ].

6. Discussion

The selected studies comprise a conceptual model based on bibliographic research. Using an open-ended technique, we analyse the selected 287 articles, which are grouped into categories based on their context. This methodology provides readers with a good indication of issues concerning the timeliness of health digitalisation. A limitation of the methodology is that selected criteria of the method might be subjective in terms of the search terms and how the papers are selected. The articles indicate that this field is initial, and further research is needed. Although several articles have created a theoretical basis for corporate sustainability and strategic digital management, only limited studies provided guidelines on the strategic digital transformation process and its health implementation stages. However, studies have also developed sustainable models, software or applications in this area. This is also the reason for creating opportunities for future researchers, who will be closed to investigate this gap and improve the viability of digital health strategies. In addition, any work carried out in case studies provides fruitful results by facilitating researchers through deep penetration into sustainable digitalisation. No generalised frameworks are available to guide the wording and implementation of digital action plans. Thus, the need for quantitative or qualitative research is created, providing conclusions on the impact of internal or external factors in the sustainability process, implementation, adoption, planning, and challenges of digital health solutions in general, as well as the impact of digital transformation. Most existing studies explore the issue of digitalisation in a particular part of a nursing institution or a disease rather than the management strategy perspective. In this way, researchers ignore a debate on obstacles and problems that often face in practice during integration. Such an analysis could lead to more profound knowledge.

7. Conclusions

In conclusion, our research observed a timeless analysis of systematised studies focusing on digital health developments. These studies broaden the researchers’ vision and provide vital information for further investigation. This article focuses on understanding digitalisation in healthcare, including, for the most part, the digitalisation of information and adopting appropriate parameters for further development. To build a more holistic view of digital health transformation, there is a great need for research on the management implications of digitalisation by different stakeholders. Finally, the development of telemedicine, the further enhancement of digital security and the strengthening of technological information systems will contribute to the universal acceptance of the digital health transformation by all involved.

Funding Statement

This research received no external funding.

Author Contributions

Conceptualisation, A.I.S., F.K. and M.A.T.; methodology, F.K. and M.A.T.; software, A.I.S.; validation, A.I.S.; data curation, A.I.S.; writing—original draft preparation, A.I.S. and M.A.T.; writing—review and editing, A.I.S. and M.A.T.; visualisation, A.I.S.; supervision, M.A.T.; project administration, M.A.T. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

Informed consent statement, data availability statement, conflicts of interest.

The authors declare no conflict of interest.

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