Barriers and facilitators to the use of personal information documents in health and social care settings for people living with dementia: A thematic synthesis and mapping to the COM‐B framework

Abstract Introduction People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person‐centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation—Behaviour (COM‐B) model can be used to understand factors determining individuals' behaviours. Objectives This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. Methods A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high‐income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM‐B framework. Results Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM‐B domain. Conclusion This framework provides a starting point for evidence‐informed initiatives to improve the use of personal information documents in the care of people with dementia. Patient and Public Contribution This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders).


| INTRODUCTION
Dementia is a public health priority according to the World Health Organization. 1 With an ageing population, improved levels of awareness, and earlier diagnosis, the prevalence is anticipated to increase. 2 Characterized by cognitive impairment, changes to behaviour and personality, communication difficulties and problems with activities of daily living, 2 there is an associated need for highquality specialist care.
Between 25% and 50% of hospital inpatients at any given time in England are people with a diagnosis of dementia. 3,4 People living with dementia (PLWD) experience higher rates of morbidity and mortality during inpatient admissions. 2,5 Hospital admission places the individual in unfamiliar surroundings, which can be frightening and disorientating, removes PLWD from their routines and habits and separates individuals from their families and carers. 3 This is particularly true during the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, where carers and families experienced difficulties visiting PLWD at home and in hospital. 6 Variation in needs between PLWD due to differing symptoms and stages of the disease and variation in support available to the individual compound the difficulty in providing person-centred care and highlight its importance. The 'person-centred approach' was first coined by Kitwood and forms a mainstay of high-quality care for PLWD. 7 The VIPS framework 8 describes person-centred care for PLWD, and underpins NICE recommendations. 2

VIPS involves:
'Valuing people with dementia and those who care for them; treating people as Individuals; looking at the world from the Perspective of the person with dementia; a positive Social environment in which the person living with dementia can experience relative wellbeing'. 2 PLWD may be unable to communicate their needs and preferences themselves. The Royal College of Psychiatrists advise use of tools to capture essential information about a PLWD. 9 Such documents are often called 'personal information documents' or 'healthcare passports', amongst other terms. 9,10 Personal information documents (PIDs) take various forms, such as booklets or leaflets.
They are designed to be completed by the PLWD, family or carers, or healthcare professionals (HCPs) involved in their care. Information such as preferred name, likes and dislikes, assistance needed with activities of daily living and routines is captured. 9 This enables essential information to be swiftly transferred between settings, such as between the home and the hospital. For example, food preferences can be easily communicated, thereby reducing complications arising from poor eating and drinking. 3 The 2018-2019 audit by the Royal College of Psychiatrists in England and Wales observed suboptimal collection of essential personal information, with only 48% noting food and drink preferences, 36% documenting triggers for distress and 32% reporting methods to calm and reassure the PLWD. 11 A Care Quality Commission report found that use of PID was varied, even within hospitals. 4 Effective use of a PID requires behavioural changes amongst several stakeholders (patients, carers and HCPs). The Capability, Opportunity, Motivation-Behaviour (COM-B) model is a theory of behaviour that contributes insights into the challenges of using a PID in a variety of contexts. 12 Positioned at the heart of the behaviour change wheel, the COM-B model is used for intervention development; 12 for example, the COM-B model has been previously successfully used in improving dementia care in hospitals. 13

| MATERIALS AND METHODS
The review protocol was prospectively registered with PROSPERO (Registration number: CRD42020193287; URL: https://www.crd.york. ac.uk/prospero/display_record.php?ID=CRD42020193287). The review was conducted and reported in accordance with ENTERQ guidelines 14 (see Table S1 ENTREQ checklist). We used principles of thematic synthesis 15 to bring together studies that report factors relating to the barriers and facilitators of the use of PIDs from the perspective of a range of stakeholders (PLWD, carers and HCPs).

| Approach to searching
Searches were preplanned, with a comprehensive search strategy developed to identify all available studies. Therefore, this review was designed to promote inclusivity.

| Electronic search strategy
A scoping search identified that the lack of a unifying term for PID was problematic. With help from a specialist librarian, a comprehensive and sensitive search strategy was developed. A copy of the search strategy for OVID Medline can be found in Table S2. Key words and Medical Subject Headings terms for the three main topic areas (adults living with dementia or cognitive impairment, their carers or health professionals; PIDs; qualitative research or mixedmethods research) were combined, according to the inclusion criteria.

| Inclusion criteria
Inclusion and exclusion criteria were determined a priori. The population of interest included adults living with dementia or cognitive impairment, their carers and HCPs. The term 'carers' is used throughout the review to refer to adult informal and unpaid carers, usually family or friends of the PLWD. 1

| Data sources
The following databases were searched: CINAHL, HMIC, MEDLINE, PsycINFO, Scopus, Web of Science to cover a range of healthcare, social science and nursing journals. Grey literature databases EThOS, OpenGrey and GoogleScholar were also searched as we felt that relevant data might be available in websites and project reports of dementia-related charities. Reference lists of relevant studies were hand searched for further articles or resources that might have been pertinent. In three cases, no full text accompanied relevant abstracts and so authors were contacted. Two responded, but full-text articles did not fulfil the eligibility criteria. Databases were searched between 2 July 2020 and 9 July 2020, and an updated search was conducted between 7 March 2022 and 9 March 2022. OVID was searched in 2022, in place of searching Medline, PsycInfo and HMIC separately.

| Study screening
Records identified from database and website searching were imported into EndNote Online. Records were deduplicated and titles clearly irrelevant to the research question were excluded by the lead author. The lead author reviewed abstracts and full texts against eligibility criteria. The reasons for exclusion were documented.
A second reviewer independently reviewed 10% of abstracts and full texts. Disagreements were discussed. Records eligible at abstract review were reviewed at full text using the same process.

| Data extraction
Data from the results sections of primary studies were extracted. We used a data extraction table, which included quality score, research question, study methodology, results (including themes identified) and limitations. 17 Data extraction tables were completed by the lead review author; 10% were independently checked by the second author for consistency.

| Quality appraisal
Studies were quality appraised using the checklist from 'Methods for the development of NICE public health guidance' 17 to assess their robustness of their conduct. The lead author appraised each paper for quality, and two papers were independently assessed by the second author for consistency. Each paper was then assigned an overall assessment score (++, +, −). There are no validated mechanisms to select studies based on their quality score for qualitative reviews, 15 and so all studies were included irrespective of score. In addition, the priority for the review was generating breadth of opinion including discordant observations.

| Analysis and synthesis
A thematic synthesis was conducted. 15 This method draws on concepts used for thematic analysis in qualitative research in primary CLARK ET AL. | 1217 studies as a method of identifying and developing themes within the data. This is an accepted method to review qualitative studies as the links between the primary studies and final synthesis are maintained. 18 Analyses were conducted separately for papers describing single-and multicomponent interventions. First, data from the results sections of papers were inductively coded using a line-byline method according to the meaning and content by the lead author, supported by qualitative data software NVIVO v12. Direct quotes were all coded, as were author statements. 19 Codes were structured (in tree form) or in free form (without hierarchical structure). New codes were created as necessary as we progressed through the papers and similar, or related, codes were grouped. If research was reported in a journal article as well as a research report, both were included. A second reviewer read and coded two of the papers. Although the initial analysis was conducted by the lead author, the analysis was reviewed in discussion with all review authors. The descriptive inductive themes were further developed by grouping codes with similar meanings. As barriers and facilitators often described the same phenomenon from different angles, they were analysed together; however, it was noted whether the quote illustrated a barrier or enabler.
Descriptive themes were then mapped onto the COM-B model for behaviour change 12 to develop an analytical framework for the barriers and facilitators to healthcare passport use, from the perspectives of PLWD, carers and HCPs. The COM-B model is used within the behaviour change wheel, which was designed specifically to support behaviour change interventions. 12

| RESULTS
The original search, conducted in July 2020, identified 3924 records (2971 after deduplication) The search was updated in March 2022 and a further 789 papers were included for screening. Eighteen studies were included in qualitative synthesis following the original search, and one additional study 20 was identified following the updated search in 2022.
Consequently, 19 papers were included in the final review (see Figure 1), of which 11 detailed a single-component intervention and 8 described a PID as part of a multicomponent intervention. Table 1 presents a summary of the included single-component studies; Table 2 summarizes multicomponent studies.
All studies were in Anglophone countries, with most set in the UK or Australia, and two papers from Canada reporting experiences from English-and French-speaking communities. Experiences were included from PLWD, carers and HCPs. Most studies (single and multicomponent) evaluated their own PID or programmes; however, four studies using an existing PID utilized This Is Me, developed by the Alzheimer's Society. 22,34,35,38 The quality assessment of the included papers is provided in the first column of Tables 1 and 2. Of the 19 papers, none were assigned a quality assessment score of ++ (all or most of the checklist criteria have been fulfilled; where they have not been fulfilled, the conclusions are very unlikely to alter); 15 were assigned a quality assessment score of + (some of the checklist criteria have been fulfilled; where they have not been fulfilled, or not adequately described, the conclusions are unlikely to alter); and four were assigned an assessment score -(few or no checklist criteria have been fulfilled and the conclusions are likely or very likely to alter). Low-quality studies were not included in the quotes in Table 3, and the authors have been mindful not to draw conclusions solely from them.  Table 3 provides example quotes, organized by COM-B domain, illustrating the barriers and facilitators of PID use. For a more detailed table of themes and quotes, please see Table S3.

| Physical capability
Attending training was predominantly discussed by HCPs, with difficulties attending training identified as a barrier, 27 and embedding training into existing education seen as a facilitator. 27 Completion of training was believed to enable a common understanding that would help HCPs keep the PID near the patient, and not throw the form away 27 -carers also commented on the need for a shared appreciation of the PID. 25 The disease process was a barrier to PLWD using the PID, due to the physical and cognitive manifestations of dementia 10,27,28 or comorbidities. PLWD may forget, or have difficulties writing. 10,28 These challenges were greater for PLWD who lived alone or those dependent on carers who were already overwhelmed. 10

| Psychological capability
HCPs identified that their own awareness of the PID is crucial, 10,23 for example, paramedics' awareness was seen to be necessary to transfer information between healthcare settings. 27 HCPs who were aware would ensure that the PID is 'kept with the patient', 27 and not ignored or thrown away. 27 However, Leavey et al. 28 described PLWD/carers with hesitant attitudes towards the PID, resistant to change despite increased awareness. HCPs, carers and PLWD had suggestions for increasing awareness, for example, using local team meetings, 27 promotional material in patient-facing areas 10 or TV advertisements. 10 Studies showed that remembering the PID is crucial to its use; for example, HCPs commented that PLWD need to take it with them. 10 Suggestions to help HCPs, carers and PLWD to have the PID available included having it available on a mobile phone 10 ; reminder stickers or posters in healthcare or care home settings 10,27 ; and alert systems on healthcare computers, 27 and that carers could remind HCPs to use the PID. 23,24 Forgetfulness was a barrier as the PID was sometimes left at home, 10,28 not transferred between the care home and hospital 27 or, once in the hospital, was forgotten and not used. 23,27 There was concern that PLWD would forget the existence of the PID and carers may be too stressed about the admission to remember it. 10

| Physical opportunity
Accessibility of the PID was a key enabler to PID use. The availability of blank forms in the community enabling PLWD and carers or care home staff to complete before hospital admission, 23,24 and completing the PID at the PLWD's home 10,22 were facilitators. Electronic access to blank PIDs (e.g., on a computer or a mobile app) was seen as helpful by PLWD, carers and HCPs; 10,27 however, some preferred paper formats. 10 Some studies scanned completed paper PID into electronic systems, which was found to be helpful. [22][23][24] Paper PIDs were found filed away in patient notes 22 ; this was overcome by keeping them in a defined location. 27,30,31 PLWD, 10 carers 10,25,28 and HCPs 10,27,28,30 all reported that lack of HCP time was a barrier to PID use. Some PIDs were more onerous to complete than others: shorter documents were generally preferred, 27 whereas longer documents were seen as too cumbersome 10,28 and people were discouraged by the time required for PID completion. 10 Furthermore, keeping the document up to date was seen as onerous. 10  admitted or discharged within that time frame were considered to be barriers. 27 PIDs that were easy to use were reported to have increased chance of use than those that were complex. 10,22,25,27,[29][30][31] The presence of carers was important: barriers to PID use included PLWD who were alone or lacked family, 22,27 and facilitators to its use were the presence of nominated individuals to take responsibility for the PID. 10,22,24,27,28,31 HCPs observed that they too were well placed to complete PIDs including in conjunction with carers. 22,27 Organizational-level factors were noted to influence PID use, for example, prioritization of health service response to the Ebola crisis or health service reaccreditation requirements. 27 Staff perceptions of F I G U R E 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. Adapted from Moher et al. 21  | 1221 small numbers of PLWD being admitted to hospital represented a barrier, 29 but proactive identification of PLWD overcame this. 27

| Social opportunity
PIDs were seen as able to both cause 27 and reduce stigma, 10 and suggestions to reduce stigmatization included informing PLWD that the PID is commonly used. 10 Embedding the PID into organizational norms and incorporating the PID into existing activities helped its use, for example, as patients were readmitted, bringing their existing PID with them. 24 HCPs commented on a lack of process as a barrier, overcome by facilitators including keeping the PID with the PLWD throughout their journey, 24,25,27 ensuring that the patient would be discharged with their PID 22 and clarifying roles and responsibilities. 22 A culture of collaboration enables PID use. HCPs stated that team working 27,29 and using existing communication networks including communication with carers 26,27,29 were beneficial. Good leadership promoted PID use, through clinical champions, modelling desired actions, local implementation teams and senior management support. 27,29 Considering PIDs as a process of continuous improvement supported its development through regular review of the initiative, 27 sharing of barriers 27 and cultivating a supportive environment and culture. 10,24,30

| Automatic motivation
The desire and willingness of PLWD and carers to use the PID influence the acceptance of PIDs. The PID was seen as a reminder of illness by PLWD 10 and an intrusion into normality by carers. 28 For those with mild dementia, the PID was seen as a future necessity once dementia had progressed 10,22,27,28 and the PLWD/carer had come to terms with the diagnosis. 10 Carer stress 10,27,28 encompassed carer health and well-being and the carer's capacity to cope. The strength of the carer-PLWD bond appears to be important in terms of PID use: where the bond was strong, PID use was better, 28 but PIDs were used less where carers were overwhelmed or upset. 10,27 The attitudes of HCPs, carers and PLWD towards the PID were important. Some carers considered the PID a chore. 10,28 HCP buy-in was important, 22,29 and some HCPs considered the PID as someone else's job. 27 Concerns were raised about the PID: carers were worried about data protection, 28 and HCPs feared for the legal status of PIDs. 28 PLWD and carers were anxious or embarrassed to write in the PID. 10,28

| Reflective motivation
The predominant theme within the synthesis was the value of the PID.
PLWD, carers and HCPs had all imagined the positive impact that the PID could have on PLWD, 10 on carers 10 and on HCPs. 22,25,26,30,31 For PLWD, the PID would improve patient-centred care, 10 '"I guess there is no reason why we couldn't actually complete it for them, if we find that we haven't got one in place already" They later discussed that it could be easier to complete the document in the community rather than in hospital, as the person was in their own environment and family may be present'. Baillie  'I just think that people don't realise that these things are the psychosocial aspect and people go, "we haven't got time to do it" but actually if you take those few seconds to fill it in, in the long term it will save time'. Baillie and Thomas (2020)  knowing that their loved one would receive improved quality of care, 27 and that their loved one would be cared for in their absence. 10,28 HCPs found the document time-saving, 22,26,30 reduced workload, 31 helped undertake the job 10,22,24,27,31 and improved the quality of care that they were able to give. 22,[25][26][27]29,30 HCP confidence improved with continued PID use. 27,29,30 Communication between PLWD, carers and HCPs was improved, 26,27 for example, where the PLWD was unable to communicate for themselves. 10,25 There was an impact on the healthcare organization as well, with reductions in specialist nursing 27 and complaints, 29 and improved restructuring of the ward. 26 Where barriers were identified, it was because the benefits of the PID had not been observed, 26,27,30 scepticism that the PID would be used 28 or that the benefit of the PID did not outweigh the burden of using it. 10 Prior experience of similar initiatives influenced receptiveness to PID use, causing PLWD or carers to self-censor, 28 25 There was uncertainty over who had ownership of the PID 10 and who would have access. 28 Carers and HCPs provided suggestions on improvements to the PID to improve its relevance. 30,31

| Multicomponent interventions
Themes from multicomponent analysis corroborated those identified from the single-component studies; for example, in physical F I G U R E 2 Themes from both single-and multicomponent studies mapped onto the COM-B model of behaviour change. COM-B, Capability Opportunity Motivation-Behaviour; HCP, healthcare professional; PID, personal information document; PLWD, people living with dementia capability, the manifestations of dementia were identified as a barrier to PID use by carers 37 and HCP training improved PID use. 38 Carers described difficulties understanding the language of the PID. 37 Clear ownership and responsibility was a facilitator. 34,37 Similar to single-component interventions, accessibility of PID, for example, with electronic adaptation 34 or a defined location 37 represented enablers. Redundancy of the PID was noted in some contexts, 37 with a suggestion to adapt the PID to the local environment. Lack of time was reported as a barrier. 36,37 HCPs reported a fear of losing a PID during transfers between wards and suggested inclusion with other documentation and clarity of responsibility. 36 PIDs were perceived as normalizing dementia care. 37 The documents would also enable carers to feel included in care. 37 Carers were concerned about information required for the PID 32 and whether the tool would be used. 37 HCPs were perceived as disinterested by carers 37 ; yet, HCPs reported feeling satisfied at being able to provide good care through using the PID. 34 Concordant with single-component intervention findings, the predominant theme was that of value of the PID with the potential to improve personalized care [33][34][35]37 ; support the PLWD's unique identity 34,37 ; and reduce or prevent responsive behaviours. 37

| Role of the carer
The importance of supporting the carer was identified in this review: 'the carer is the lynchpin'. 10 Carers are required at key moments in

| Healthcare services
Hospitals are task orientated rather than person-centred. 47 PLWD, carers and HCPs all identified that PID can promote person-centred care. Therefore, the organizational culture must support and value person-centred care to promote quality of care. 47 For example, studies have shown that getting to know PLWD on hospital wards was not prioritized by managers or ward staff, in part due to workload constraints. 44 High HCP workload is a barrier to the use of other patient-held records also. 46 Yet, although time and workload constraints were identified by this review as barriers, others stated that the PID could be time saving. The healthcare service must provide adequate resources-including staff time and valuing the staff that provide it. 42,45 Reprioritization at an organizational level could facilitate better PID use.
Other research has advocated for senior support for personalized care. 39,45 Patient safety is inherent to any healthcare organization, 48 and so this focus could be harnessed by the power of the PID to improve patient-centred care. 45 For example, Luxford et al. noted a reduction in chemical restraint since the introduction of their PID, 29 an important outcome as medications are associated with increased morbidity and mortality. 49

| Overarching policy
A system-wide approach is needed to embed the PID fully-PLWD receive care from a number of organizations, and PLWD may be transferred between settings. Expectations and understanding of the PID must align for all stakeholders for successful PID use. In accordance with our findings, reviews of other PIDs identified the importance of clarifying in advance the responsibility for the PID, its purpose and process, including embedding the PID within current work practices. 39,46

| Review limitations
Difficulties were encountered during the literature search due to the lack of a unifying term for PID. There may be publication bias, for example, with internal service evaluations and audits of PID not having been published. Thus, some pertinent barriers and facilitators may not have been identified. However, a range of studies, heterogeneous in design, population and PID used, were identified.
This review utilized an inclusive approach to garner the breadth of barriers and facilitators.
Four of the 19 studies were of low quality (scoring '−' on quality appraisal), with the remaining 15 scoring '+' and none scoring '++'.
There is no standard PID in use, and so the PID used differed between studies. Barriers and facilitators may depend on the PID used (e.g., some study participants complained that the PID was too long 28 ; others stated that the PID was short and easy to use. 29 This will limit comparability between studies-but also validates some findings as they are reproducible in different settings.
There is limited external validity of findings; they may need adaptation for consideration to context. For example, cultural differences between healthcare organizations or PLWD demographic groups may influence engagement with PID. Parke et al. had separate focus groups for English-and French-speaking participants in Canada and noted that cultural differences mediated the appreciation of hospital-readiness tools, including PID. Changes to the language used were advised by participants. 37 The voice of PLWD remains quiet, especially in studies of PID within toolkits. Data were lacking on the influence of the stage of dementia on the barriers and facilitators to PID use. This may reflect difficulties in recruiting PLWD into research studies.
Finally, while mapping themes to the COM-B model has benefits in terms of identifying future interventions to support PID use, some themes did not fit neatly within any one subcomponent of the model.