The (dis)organization of leg ulcer care: A realist synthesis.

BACKGROUND: Venous leg ulcers affect 1.5% of the UK adult population. Leg ulcers are painful, can be malodourous and are associated with poor quality of life. Leg ulcers are predominantly cared for by nurses in the community. Frequently, patients receive suboptimal treatment through unwanted variations in care and simple ulcers deteriorate to become hard-to-heal wounds. It is important to understand the current UK system of care and how nurses and patients navigate through it. AIM: The aim of this paper was to understand how, when, for whom and in what context leg ulcers are cared for in the United Kingdom and specifically, the current system of care, the nurses' role and the patients' experience in this system of care. DESIGN: A realist synthesis of the literature was undertaken, reported following the RAMESES publication standards: Realist syntheses. DATA SOURCES: An iterative literature search was conducted across three recognized health collections from January 2010 to January 2022 that included descriptive studies as well as primary research. RESULTS: 73 papers were included. CONCLUSION: In the absence of UK national guidance that recommends how leg ulcer care is organized and delivered, care is commissioned locally, with variable outcomes. Patients with venous leg ulcers would like to be looked after by knowledgeable, skilled and confident nurses, in well-equipped and staffed clinics; nurses who have the ability to make clinical judgements to alter their treatment when necessary and are empowered to refer to specialist centres when further support is required. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This synthesis offers guidance to commissioners and providers to change how leg ulcer care is organized. PATIENT OR PUBLIC CONTRIBUTION: The views of a patient and public group was sought at each stage of the synthesis.

'The book's a conversation starter': a realist exploration of the salutogenic potential of reading for pleasure.

Reading for Wellbeing (RfW) is a pilot initiative, aimed at improving mental health and well-being through supporting access and increasing opportunities to read for pleasure. RfW was implemented across six North-East local authorities in England and employed Community Reading Workers to support access to books and reading for targeted populations. The current study used realist methodology to understand context, potential mechanisms of action, acceptability and reported outcomes. Data generation and analysis were conducted iteratively, using focus groups, interviews and observations.The analysis of the collated data highlighted that a positive attitude towards reading and a desire for social connections were significant motivators for engagement with RfW. This paper postulates eight programme theories relating to that context, which describe key mechanisms within RfW linked to engagement with reading, well-being, connections and practice. The paper concludes that previous notions of positivity associated with reading for pleasure enable participants to experience RfW as a positive social encounter. This positive social encounter enhances participants' multiple resistance resources such as increased sense of self-efficacy and connectedness that could impact on their sense of well-being.

Social capital and women's narratives of homelessness and multiple exclusion in northern England.

Women experiencing three or more co-occurring issues (homelessness, substance misuse, mental health) are a highly vulnerable population associated with multimorbidity. Taking women's life stories of trajectories into social exclusion in the north of England as its focus, this paper aims to explore the complexity of social contexts in which women navigate extreme health inequalities. Of the few studies that have examined women's experiences of homelessness through the lens of social capital, most have focused on network size, rather than the quality and influence of the relationships which precipitate or contextualise experiences of social exclusion. We utilise case studies to offer a theoretically-grounded analysis which illustrates the relationship between social capital and homelessness within this population. Our results illustrate how structural contexts, and specifically social capital accrual and social bonding processes particularly pertinent to women can act to both ameliorate and perpetuate social exclusion. We conclude by arguing that health inequalities cannot be tackled as single-issue processes but instead are multi-layered and complex.

Why patients in specialist palliative care in-patient settings are at high risk of falls and falls-related harm: A realist synthesis.

BACKGROUND: Falls are the third highest reported safety incident in Specialist Palliative Care in-patient settings and yet specific risk factors connected with falling and associated outcomes in this setting are poorly understood. AIM: To understand the key individualised risk factors leading to falls in specialist in-patient palliative care settings and understand the implications and outcomes for the patients who fall. DESIGN: A realist synthesis of the literature, reported following the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) standards. DATA SOURCES: An iterative literature search was conducted across three recognised health collections as well as grey literature from policy, practice and other relevant areas. RESULTS: Falls taking place within in-patient specialist palliative care settings can cause significant harm to patients. The risk factors for these patients are multifaceted and often interlinked with underpinning complex realist mechanisms including a history of falls, the age of the person, impact of complex medications, improving functional status and the presence of delirium. CONCLUSION: In-patients in specialist palliative care settings are at risk of falling and this is multifactorial with complex reasoning mechanisms underpinning the identified risks. There is a significant impact of a fall in this cohort of patients with many sustaining serious harm, delayed discharge and both physical and psychological impacts.

The Year of Care approach: developing a model and delivery programme for care and support planning in long term conditions within general practice.

BACKGROUND: People with long term conditions (LTCs) make most of the daily decisions and carry out the activities which affect their health and quality of life. Only a fraction of each contact with a health care professional (HCP) is spent supporting this. This paper describes how care and support planning (CSP) and an implementation framework to redesign services, were developed to address this in UK general practice. Focussed on what is important to each individual, CSP brings together traditional clinical issues and the person's lived experience in a solution focussed, forward looking conversation with an emphasis on 'people not diseases'. METHODS: The components of CSP were developed in three health communities using diabetes as an exemplar. This model was extended and refined for other single conditions and multimorbidity across 40 sites and two nations, over 15 years. Working with local teams and communities the authors used theoretical models of care, implementation and spread, developing and tailoring training, support and resources to embed CSP as usual care, sharing learning across a community of practice. RESULTS: The purpose, content, process, developmental hurdles and impact of this CSP model are described, alongside an implementation strategy. There is now a robust, reproducible five step model; preparation, conversation, recording, actions and review. Uniquely, preparation, involving information sharing with time for reflection, enables an uncluttered conversation with a professional focussed on what is important to each person. The components of the Year of Care House act as a checklist for implementation, a metaphor for their interdependence and a flexible framework. Spreading CSP involved developing exemplar practices and building capacity across local health communities. These reported improved patient experience, practitioner job satisfaction, health behaviours and outcomes, teamwork, practice organisation, resource use, and links with wider community activities. CONCLUSIONS: Tested in multiple settings, CSP is a reproducible and practical model of planned care applicable to all LTCs, with the capacity to be transformative for people with LTCs and health care professionals. It recaptures relational dimensions of care with transactional elements in the background. Options for applying this model and implementation framework at scale now need to be explored.

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution.

BACKGROUND: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. METHOD: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. RESULTS: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital - a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. CONCLUSIONS: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.

Open communication strategies between a triad of 'experts' facilitates death in usual place of residence: A realist evaluation.

BACKGROUND: In order to meet policy drivers on death in usual place of residence, it is key to understand how shared decision-making can be facilitated in practice. An integrated care pathway was implemented in primary care in the North East of England to facilitate death in usual place of residence. AIM: To understand how, for whom and in which circumstances death in usual place of residence is facilitated. DESIGN: A mixed method realist evaluation was employed. Local primary care practice death audit data were analysed to identify outcomes using a mixed effects logistic regression model. Focus groups and interviews with staff of the integrated care pathway and bereaved relatives were analysed to identify the related contexts and mechanisms. SETTING/PARTICIPANTS: Death audit data of 4182 patients were readily available from 14 general practitioner practices. Three focus groups were conducted with primary and secondary care staff, voluntary sector organisations and care home representatives. Interviews with bereaved relatives were carried out in participants' homes ( n = 5). RESULTS: A mixed effects logistic regression model indicated a significant effect of year on death in usual place of residence when compared to a model without year using an analysis of deviance ( p = 0.016). Qualitative analysis suggested that this outcome was achieved when a triad of 'experts' (comprising patient, family members/family carers/formal carers and healthcare professionals) used open communication strategies. CONCLUSION: An empirically supported theory of how, for whom and in which circumstances death in usual place of residence happens is provided, which has important implications for both policy and practice.

Care Planning: What Works, for Whom, and in What Circumstances? A Rapid Realist Review.

Care planning has been described as a "better conversation" that helps people with long-term conditions to be in control of planning their care. Each person with long-term conditions faces individual challenges and each health care setting is fundamentally different, so there is a need for empirical testing of the specific mechanisms through which care planning may lead to health improvements. A rapid realist review was conducted to unearth underpinning mechanisms leading to outcomes in particular contexts. These are expressed in the form of realist theories, which are developed and refined through the review process. Fifty-one full text studies were included in the review. Seven program theories were iteratively tested and refined. A detailed description of what care planning is and what it should look like in practice has been achieved in the form of realist theories.

Reducing inequalities in care for patients with non-malignant diseases: Insights from a realist evaluation of an integrated palliative care pathway.

BACKGROUND: The need for palliative care is growing internationally with an increasing prevalence of non-malignant diseases. The integrated care pathway was implemented in primary care by multidisciplinary teams from 2009 in a locality in the North East of England. Fourteen general practitioner practices provided data for the study. AIM: To find whether, how, and under what circumstances palliative care registrations are made for patients with non-malignant diseases in primary care. DESIGN: General practitioner practice data were analysed statistically and qualitative data were collected from health care professionals and members of relevant organisations. FINDINGS: A mixed-effects logistic model indicated a significant difference beyond the 0.1% level (p < 0.001) in registrations between the malignant and non-malignant groups in 2011, with an odds ratio of 0.09 (=exp(-2.4266)), indicating that patients in the non-malignant group are around 11 times (1/0.09) less likely to be registered than patients in the malignant group. However, patients with non-malignant diseases were significantly more likely to be registered in 2012 than in 2011 with an odds ratio of 1.46, significant beyond the 1% level. Qualitative analyses indicate that health care professionals find registering patients with non-malignant diseases stressful, yet feel that their confidence in treating this population is increasing. CONCLUSION: The integrated care pathway began to enable the reduction in inequalities in care by identifying, registering and managing an increasing number of palliative patients with non-malignant diseases. Consensual and inclusive definitions of palliative care were developed in order to legitimise the registration of such patients.

Understanding communication pathways to foster community engagement for health improvement in North West Pakistan.

BACKGROUND: This paper describes the community engagement process undertaken to ascertain the focus, development and implementation of an intervention to improve iodised salt consumption in rural communities in North West Pakistan. The Jirga is a traditional informal structure, which gathers men respected within their community and acts in a governing and decision-making capacity in the Pukhtoon culture. The Jirga system had a dual purpose for the study: to access men from the community to discuss the importance of iodised salt, and as an engagement process for the intervention. METHODS: A number of qualitative data collection activities were undertaken, with Jirga members and their wives, male and female outreach workers and two groups of women, under and over 40 years old. The aim of these was to highlight the communication channels and levers of influence on health behaviour, which were multiple and complex and all needed to be taken into consideration in order to ensure successful and locally sensitive community engagement. RESULTS: Communication channels are described within local families and the communities around them. The key influential role of the Jirga is highlighted as linked both to the standing of its members and the community cohesion ethos that it embodies. Engaging Jirga members in discussions about iodised salt was key in designing an intervention that would activate the most influential levers to decision making in the community. Gendered decision-making processes within the household have been highlighted as restricting women's autonomy. Whilst in one respect our data confirm this, a more complex hierarchy of decisional power has been highlighted, whereby the concept of 'wisdom'- an amalgamation of age, experience and education- presents important possibilities. Community members with the least autonomy are the youngest uneducated females, who rely on a web of socially and culturally determined ways to influence decision-making. CONCLUSIONS: The major lines of communication and influence in the local community described are placed within the wider literature on community engagement in health improvement. The process of maximisation of local cultural knowledge as part of a community engagement effort is one that has application well beyond the particular setting of this study.

Care planning for long-term conditions ­ a concept mapping.

OBJECTIVE: This article focuses on approaches within clinical practice that seek to actively involve patients with long-term conditions (LTCs) and how professionals may understand and implement them. Personalized care planning is one such approach, but its current lack of conceptual clarity might have impeded its widespread implementation to date. A variety of overlapping concepts coexist in the literature, which have the potential to impair both clinical and research agendas. The aim of this article is therefore to explore the meaning of the concept of care planning in relation to other overlapping concepts and how this translates into clinical practice implementation. METHODS: Searches were conducted in the Cochrane database for systematic reviews, CINHAL and MEDLINE. A staged approach to conducting the concept mapping was undertaken, by (i) an examination of the literature on care planning in LTCs; (ii) identification of related terms; (iii) locating reviews of those terms. Retrieved articles were subjected to a content analysis, which formed the basis of our concept maps. (iv) We then appraised these against knowledge and experience of the implementation of care planning in clinical practice. RESULTS AND CONCLUSIONS: Thirteen articles were retrieved, in which the core importance of patient-centredness, shared decision making and self-management was highlighted. Literature searches on these terms retrieved a further 24 articles. Our concept mapping exercise shows that whilst there are common themes across the concepts, the differences between them reflect the context and intended outcomes within clinical practice. We argue that this clarification exercise will allow for further development of both research and clinical implementation agendas.

Does better than expected life expectancy in areas of disadvantage indicate health resilience? Stakeholder perspectives and possible explanations.

Some places have better than expected health trends despite being disadvantaged in other ways. Thematic analysis of qualitative data from stakeholders (N = 25) in two case studies of disadvantaged local authorities the North West and South East of England assessed explanations for the localities' apparent health resilience. Participants identified ways of working that might contribute to improved life expectancy, such as partnering with third sector, targeting and outcome driven action. Stakeholders were reluctant to assume credit for better-than-expected health outcomes. External factors such as population change, national politics and finances were considered crucial. Local public health stakeholders regard their work as important but unlikely to cause place-centred health resilience.

Cost-effectiveness of health-related lifestyle advice delivered by peer or lay advisors: synthesis of evidence from a systematic review.

BACKGROUND: Development of new peer or lay health-related lifestyle advisor (HRLA) roles is one response to the need to enhance public engagement in, and improve cost-effectiveness of, health improvement interventions. This article synthesises evidence on the cost-effectiveness of HRLA interventions aimed at adults in developed countries, derived from the first systematic review of the effectiveness, cost-effectiveness, equity and acceptability of different types of HRLA role. METHODS: The best available evidence on the cost-effectiveness of HRLA interventions was obtained using systematic searches of 20 electronic databases and key journals, as well as searches of the grey literature and the internet. Interventions were classified according to the primary health behaviour targeted and intervention costs were estimated where necessary. Lifetime health gains were estimated (in quality-adjusted life years, where possible), based on evidence of effectiveness of HRLAs in combination with published estimates of the lifetime health gains resulting from lifestyle changes, and assumptions over relapse. Incremental cost-effectiveness ratios are reported. RESULTS: Evidence of the cost-effectiveness of HRLAs was identified from 24 trials included in the systematic review. The interventions were grouped into eight areas. We found little evidence of effectiveness of HRLAs for promotion of exercise/improved diets. Where HRLAs were effective cost-effectiveness varied considerably: Incremental Cost effectiveness Ratios were estimated at £6,000 for smoking cessation; £14,000 for a telephone based type 2 diabetes management; and £250,000 or greater for promotion of mammography attendance and for HIV prevention amongst drug users. We lacked sufficient evidence to estimate ICERs for breastfeeding promotion and mental health promotion, or to assess the impact of HRLAs on health inequalities. CONCLUSIONS: Overall, there is limited evidence suggesting that HRLAs are cost-effective in terms of changing health-related knowledge, behaviours or health outcomes. The evidence that does exist indicates that HRLAs are only cost-effective when they target behaviours likely to have a large impact on overall health-related quality of life. Further development of HRLA interventions needs to target specific population health needs where potential exists for significant improvement, and include rigorous evaluation to ensure that HRLAs provide sufficient value for money.

A review of leg ulcerations coverage in the United Kingdom print media: A growing problem for the vulnerable adult.

It is estimated that venous leg ulcers affect 1-1.5% of the industrialised world's population. These can be painful, malodorous and debilitating to the person affected. In this paper we explore, through an analysis of the print media, how journalists translate medical knowledge into lay language and how they represent new directions in treatment. We also show how the term 'leg ulcer' is used as part of the description of vulnerable people at the edge of society, some whom are to be seen as needing our compassion, others as (morally) problematic. Finally, we show how stories around 'leg ulcers' are also used in relation to narratives around austerity in the UK and to show gaps in health and social care. We conclude that journalists, wound care researchers and health professionals should work together to inform the public and persons affected that leg ulceration can be successfully treated.

"They Tarred Me with the Same Brush": Navigating Stigma in the Context of Child Removal.

Child removals are increasing in England and Wales. Family court involvement is particularly common among women with multiple disadvantages, and the rates are higher in economically marginalised areas. This article aims to explore women's narratives of child removal within life stories of homelessness and examines how stigma, power and State surveillance manifest in their experiences. Data drawn from qualitative interviews with 14 mothers in the north-east of England who had experienced the removal of their children through the family courts are explored within the wider context of a neoliberal political agenda of "troubled families", and in particular, "deviant mothers". The participants describe how stigma structured their interactions with social services. Despite the known poor outcomes associated with child removal for both mothers and children, professional involvement often tapers off afterwards, with little support for mothers. Drawing on women's accounts, we seek to illuminate their experiences of child removal and enhance our understanding of how stigma plays out in statutory settings, further entrenching social exclusion and ultimately increasing health inequalities.

Development and implementation of a nutrition intervention programme in North West Pakistan: a realist framework.

Maternal and infant malnutrition is prevalent in rural regions of NW Pakistan. This article reports on the use of a combination of a realist Context-Mechanism-Outcome framework and participatory appraisal methods to facilitate the development of a locally sensitive and responsive nutritional intervention programme. Data were gathered through a series of focus group (FG) discussions with local lady health workers, as well as pregnant and breastfeeding women attending an Emergency Field Hospital in North West Pakistan between May 2008 and March 2009. A nutrition intervention programme was implemented that involved cookery demonstration kitchens and free food supplements, coupled with nutrition and healthcare information and advice for pregnant and breastfeeding women. Subsequent FG discussions revealed that the programme had a positive impact on knowledge gained by women in the community and generated an openness to receiving and spreading knowledge. The framework, which rested on the use of a double feedback loop, involving local women, lady health workers, local researchers and UK-based researchers, has enabled not only the establishment of the programme, but has also given the local team the tools to apply for, and gain, further funding for the development of nutrition support services. The development of such methodological tools, which empower local researchers and service providers (wherever located) to operationalize local knowledge and assess interventions, is particularly relevant in international financially-constrained contexts.

Blurring the boundaries between synthesis and evaluation. A customized realist evaluative synthesis into adolescent risk behavior prevention.

Realist methodologies have been increasingly advocated for the investigation of complex social issues. Public health programs, such as those designed to prevent adolescent risk behavior, are typically considered complex. In conducting a realist review of the empirical literature relating to such programs, we encountered several challenges, including (a) an overabundance of empirical evidence, (b) a problematic level of heterogeneity within and between methodological approaches, (c) discrepancies between theoretical underpinnings and program operationalization, (d) homogeneity of program outcomes, with very little variation in program effectiveness, and (d) a paucity of description relating to content and process. To overcome these challenges, we developed a customized approach to realist evidence synthesis, drawing on the VICTORE (Volition, Implementation, Contexts, Time, Outcomes, Rivalry, and Emergence) complexity checklist and incorporating stakeholder engagement as primary data to achieve greater depth of understanding relating to contextual and mechanistic factors, and the complex interactions between them. Here we discuss the benefits of this adapted methodology alongside an overview of the research through which the methodology was developed. A key finding from this research was that combining the complexity checklist with primary data from stakeholder engagement enabled us to systematically interrogate the data across data sources, uncovering and evidencing mechanisms which may otherwise have remained hidden, giving greater ontological depth to our research findings. This paper builds on key methodological developments in realist research, demonstrating how realist methodologies can be customized to overcome challenges in developing and refining program theory from the literature, and contributes to the broader literature of innovative approaches to realist research. HIGHLIGHTS: Published reporting standards for realist review provide a set of guiding principles for conducting realist research. However, these are not recommended to be used in a prescriptive sense, and customization of the methodology to account for potential idiosyncrasies within a specific evidence base is accepted. A small number of papers within the existing literature have used each of the two key adaptions discussed within this study, though reasons for doing so have not been considered in any great depth. Furthermore, combining both of these adaptions to take an evaluative approach to realist synthesis is novel to this work and lends greater ontological depth to the research findings than may otherwise have been achieved. This study builds on key methodological developments in realist research, demonstrating how realist methodologies can be customized to overcome challenges in developing and refining program theory from the literature, and contributes to the broader literature of innovative approaches to realist research.

'Everything takes too long and nobody is listening': Developing theory to understand the impact of advice on stress and the ability to cope.

Shrinking state spending in the UK has been accompanied by a profound restructuring of the welfare system, leading to financial insecurity for many people, culminating in extreme stress and serious deterioration of physical and mental health. Theory surrounding the impact of welfare advice on stress is lacking; this paper undertakes an in depth exploration of the experiences of stress among welfare advice seekers, considering these in light of existing substantive theories of stress and coping to generate new insight. A thematic analysis explored the experiences of stress in welfare advice seekers. Four overarching themes and twelve subthemes emerged. They are further understood utilising traditional theories of stress (Transactional Model of Stress and Coping and the Conservation of Resources theory), which then underpin the development of a 'Stress Support Matrix' and a holistic theory related specifically to welfare, stress and coping.

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes.

INTRODUCTION: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes. OBJECTIVE: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home. DESIGN: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances. SETTING: A hospice in the North East of England, operating in the community, through volunteers. PARTICIPANTS: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8). RESULTS: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation. CONCLUSIONS: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences. DESIGN: Qualitative study using interviews and focus groups. SETTING: Health and Social Care Services in the North of England. PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members. RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system. CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.