How are hospitals in England caring for women at risk of preterm birth in 2021? The influence of national guidance on preterm birth care in England: a national questionnaire.

BACKGROUND: National guidance (Saving Babies Lives Care Bundle Version 2 (SBLCBv2) Element 5) was published in 2019, with the aim to standardise preterm care in England. We plan to identify how many preterm birth surveillance clinics there are in England, and to define current national management in caring for women who are both asymptomatic and high-risk of preterm birth, and who arrive symptomatically in threatened preterm labour, to assist preterm management both nationally and internationally. METHODS: An online survey comprising of 27 questions was sent to all maternity units in England between February 2021 to July 2021. RESULTS: Data was obtained from 96 units. Quantitative analysis and free text analysis was then undertaken. We identified 78 preterm birth surveillance clinics in England, an increase from 30 preterm clinics in 2017. This is a staggering 160% increase in 4 years. SBLCBv2 has had a considerable impact in increasing preterm birth surveillance clinic services, with the majority (61%) of sites reporting that the NHS England publication influenced their unit in setting up their clinic. Variations exist at every step of the preterm pathway, such as deciding which risk factors warrant referral, distinguishing within particular risk factors, and offering screening tests and treatment options. CONCLUSIONS: While variations in care still do persist, hospitals have done well to increase preterm surveillance clinics, under the difficult circumstances of the COVID pandemic and many without specific additional funding.

Attracting, recruiting and retaining nurses and care workers working in care homes: the need for a nuanced understanding informed by evidence and theory.

The care home sector relies on nurses and care workers to deliver care to residents living with frailty and complex needs. However, attracting, recruiting and retaining staff is one of the biggest challenges facing this sector. There is evidence available that describes factors that influence staff decisions to join and/or remain in the care home workforce, for example, individual rewards (such as feeling valued at work or training opportunities), relationships with colleagues and residents, supportive management or working arrangements (including flexible hours). However, it is less clear how different strategies are informed by evidence to improve recruitment and retention. Care homes are heterogeneous in terms of their size, staffing levels and mix, staff age groups, geographical location and working conditions. What matters to different members of the care home workforce will vary across nurses and care workers of different ages and levels of qualification or experience. Recognising this diversity is key: understanding how to attract, recruit and retain staff needs to discriminate and offer solutions that address this diversity. This important area of practice does not lend itself to a 'one-approach-fits-all' solution. This commentary provides a brief overview of known workforce challenges for the care home sector and argues for studies that use empirical evidence to test different theories of what might work for different staff, how and why, and in different circumstances.

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.

IMplementation of the Preterm Birth Surveillance PAthway: a RealisT evaluation (The IMPART Study).

BACKGROUND: In the UK, 7.6% of babies are born preterm, which the Department of Health aims to decrease to 6% by 2025. To advance this, NHS England released Saving Babies Lives Care Bundle Version 2 Element 5, recommending the Preterm Birth Pathway for women at risk of preterm birth. The success of this new pathway depends on its implementation. The IMPART (IMplementation of the Preterm Birth Surveillance PAthway: a RealisT evaluation) study aimed to research how, why, for whom, to what extent and in what contexts the prediction and prevention aspects of Preterm Birth Surveillance Pathway is implemented through a realist evaluation. Realist implementation studies are growing in popularity. METHODS: Initial programme theories were developed through a realist informed literature scope, interviews with developers of the NHS England guidance, and a national questionnaire of current practice. Implementation theory was utilised in developing the programme theories. Data (interviews and observations with staff and women) were undertaken in 3 case sites in England to 'test' the programme theories. Substantive theory was utilised during data analysis to interpret and refine the theories on how implementation could be improved. RESULTS: Three explanatory areas were developed: risk assessing and referral; the preterm birth surveillance clinic; and women centred care. Explanatory area 1 dealt with the problems in correct risk assessment and referral to a preterm clinic. Explanatory area 2 focused on how once a correct referral has been made to a preterm clinic, knowledgeable and supported clinicians can deliver a well-functioning clinic. Explanatory area 3 concentrated on how the pathway delivers appropriate care to women. CONCLUSIONS: The IMPART study provides several areas where implementation could be improved. These include educating clinicians on knowledge of risk factors and the purpose of the preterm clinic, having a multidisciplinary preterm team (including a preterm midwife) with specialist preterm knowledge and skills (including transvaginal cervical scanning skills), and sites actively working with their local network. This multidisciplinary preterm team are placed to deliver continuity of care for women at high-risk of preterm birth, being attentive to their history but also ensuring they are not defined by their risk status. TRIAL REGISTRATION: ISRCTN57127874.

'For Want of a Nail': developing a transparent approach to retroduction and early initial programme theory development in a realist evaluation of community end of life care services.

A crucial part of theory-driven realist thinking is retroduction, the process of looking backwards for explanation of how and why things may be. Conducted early in the realist evaluation process, it provides a foundation for evidenced 'theory gleaning'. Despite retroduction being an inherent part of the realist process, it is often 'hidden' in realist reports. This paper explains the thinking behind, alongside an example of, a framework created by the authors to make transparent the retroductive process as used in a realist evaluation of two community End of Life Care services. The approach makes visible the application of the 'sociological imagination' and lends robustness to hypotheses by establishing how the authors utilised: wide-ranging potential generative causation; stakeholder and Patient and Public Involvement feedback; literature scoping; and substantive theories at the middle range, specifically Transitions Theory. These stages led to the development of Initial Programme Theories, with a clear history of genesis.

An exploratory randomised controlled trial using short messaging service to facilitate insulin administration in young adults with type 1 diabetes.

This exploratory randomised controlled trial examined the effectiveness of a novel short messaging service intervention underpinned by the theory of planned behaviour (TPB) in improving insulin administration in young adults with type 1 diabetes and the role of moderating variables. Those in the intervention condition (N = 8) received one daily text message underpinned by TPB constructs: Attitudes, subjective norms, perceived behavioural control and intention. Those in the control condition (N = 10) received weekly general health messages. Self-reported insulin administration was the main outcome measure; conscientiousness and consideration of future consequences (CFC) were measured as potential moderators. Analyses of covariance revealed no main effects of condition for morning and afternoon injections but a marginally significant effect for evening injections (p = .08). This main effect was qualified by significant interactions of condition with conscientiousness (p = .001), CFC (p = .007) and a three-way interaction among condition, conscientiousness and CFC (p = .009). Exploration of the interactions indicated the intervention significantly improved evening injection rates only in the low conscientiousness and low CFC groups. This effect was particularly strong among those low in both conscientiousness and CFC. Further investigation is warranted, using more objective measures of insulin adherence in a larger sample.

Applying and reporting relevance, richness and rigour in realist evidence appraisals: Advancing key concepts in realist reviews.

The realist review/synthesis has become an increasingly prominent methodological approach to evidence synthesis that can inform policy and practice. While there are publication standards and guidelines for the conduct of realist reviews, published reviews often provide minimal detail regarding how they have conducted some methodological steps. This includes selecting and appraising evidence sources, which are often considered for their 'relevance, richness and rigour.' In contrast to other review approaches, for example, narrative reviews and meta-analyses, the inclusion criteria and appraisal of evidence within realist reviews depend less on the study's methodological quality and more on its contribution to our understanding of generative causation, uncovered through the process of retroductive theorising. This research brief aims to discuss the current challenges and practices for appraising documents' relevance, richness and rigour and to provide pragmatic suggestions for how realist reviewers can put this into practice.

Understanding the challenges and impact of training on referral of postnatal women to a community physical activity programme by health professionals: A qualitative study using the COM-B model.

OBJECTIVE: To understand the value of training for health professionals for improving their ability to effectively refer postnatal women to a targeted community physical activity programme. The study also sought to understand challenges to effective referral of postnatal women from deprived areas. DESIGN, SETTING AND PARTICIPANTS: Semi-structured interviews were conducted in January-February 2020 with early years practitioners (n = 4), health visitors (n = 1) and community midwives (n = 2) who had participated in a training workshop implemented as part of a targeted community physical activity referral programme for postnatal women from deprived areas in the North East of England. Two follow up interviews were also conducted with one midwife and one early years practitioner during the Covid-19 pandemic. Data were analysed thematically and the Capability, Opportunity, Motivation, Behaviour (COM-B) model was employed to facilitate identification of the impact of training and the challenges in referral from the health professionals' perspective. FINDINGS: The training increased capability to refer by improving knowledge and confidence of health professionals in being able to give appropriate guidance to postnatal women about physical activity without having to refer to other professionals. Health professionals reported adequate opportunities to engage with postnatal women, were motivated to refer and perceived this to be part of their role. The timing and method of message delivery were key contexts for perceived successful referral, particularly for midwives who wanted to ensure the messaging began in the antenatal period. Low staffing levels, limited interprofessional collaboration and finding strategies to engage women from deprived areas were key challenges to effective delivery of physical activity messages. These challenges were exacerbated during Covid-19, with increased mental health issues amongst postnatal women. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Training health professionals for physical activity messaging can be a useful way to increase capability, opportunity, and motivation to refer to physical activity interventions for postnatal women in deprived areas to potentially increase physical wellbeing and reduce postnatal depression. The COM-B is a relevant framework to underpin training. A clearly identified referral pathway and staffing issues need to be addressed to improve referrals by health professionals.

Achieving integrated treatment: a realist synthesis of service models and systems for co-existing serious mental health and substance use conditions.

Approximately 30-50% of people with serious mental illness have co-existing drug or alcohol problems (COSMHAD), associated with adverse health and social care outcomes. UK guidelines advocate both co-occurring needs being met within mental health services, but uncertainty remains about how to operationalise this to improve outcomes. Various unevaluated service configurations exist in the UK. A realist synthesis was done to identify, test, and refine programme theories of how context shapes the mechanisms through which UK service models for COSMHAD work, for whom, and in what circumstances. Structured and iterative realist searches of seven databases identified 5099 records. A two-stage screening process identified 132 papers. Three broad contextual factors shaped COSMHAD services across 11 programme theories: committed leadership, clear expectations regarding COSMHAD from mental health and substance use workforces, and clear care-coordination processes. These contextual factors led to increased staff empathy, confidence, legitimisation, and multidisciplinary ethos, which improved care coordination and increased the motivation of people with COSMHAD to work towards their goals. Our synthesis highlights that integrating COSMHAD care is complex, and both individual and cultural behavioural shifts in leadership, workforce, and service delivery are essential to ensure people with COSMHAD receive compassionate, trauma-informed care that meets their needs.

Codesigning a systemic discharge intervention for inpatient mental health settings (MINDS): a protocol for integrating realist evaluation and an engineering-based systems approach.

INTRODUCTION: Transition following discharge from mental health hospital is high risk in terms of relapse, readmission and suicide. Discharge planning supports transition and reduces risk. It is a complex activity involving interacting systemic elements. The codesigning a systemic discharge intervention for inpatient mental health settings (MINDS) study aims to improve the process for people being discharged, their carers/supporters and staff who work in mental health services, by understanding, co-designing and evaluating implementation of a systemic approach to discharge planning. METHODS AND ANALYSIS: The MINDS study integrates realist research and an engineering-informed systems approach across three stages. Stage 1 applies realist review and evaluation using a systems approach to develop programme theories of discharge planning. Stage 2 uses an Engineering Better Care framework to codesign a novel systemic discharge intervention, which will be subjected to process and economic evaluation in stage 3. The programme theories and resulting care planning approach will be refined throughout the study ready for a future clinical trial. MINDS is co-led by an expert by experience, with researchers with lived experience co-leading each stage. ETHICS AND DISSEMINATION: MINDS stage 1 has received ethical approval from Yorkshire & The Humber-Bradford Leeds (Research Ethics Committee (22/YH/0122). Findings from MINDS will be disseminated via high-impact journal publications and conference presentations, including those with service user and mental health professional audiences. We will establish routes to engage with public and service user communities and National Health Service professionals including blogs, podcasts and short videos. TRIAL REGISTRATION NUMBER: MINDS is funded by the National Institute of Health Research (NIHR 133013) https://fundingawards.nihr.ac.uk/award/NIHR133013. The realist review protocol is registered on PROSPERO. PROSPERO REGISTRATION NUMBER: CRD42021293255.

Longitudinal realist evaluation of the Dementia PersonAlised Care Team (D-PACT) intervention: protocol.

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. METHOD: High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. CONCLUSION: The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

Protocol for the IMPART study: IMplementation of the preterm birth surveillance PAthway - a RealisT evaluation.

INTRODUCTION: New guidance, from NHS England (Saving Babies Lives Care Bundle Version 2 Element 5 (SBLCBv2)) has recommended a best practice pathway for women at risk of preterm birth (the Preterm Birth Pathway). This is to help meet the Department of Health's aim to reduce preterm birth from 8% to 6% by 2025. Considering most hospitals do not currently have a preterm prevention clinic, implementing this pathway will require significant coordination. METHODS AND ANALYSIS: The study will aim to investigate key features of contexts, mechanisms and outcomes, and their interactions in the implementation of the asymptomatic prediction and prevention components of the SBLCBv2 Preterm Birth Surveillance Pathway. This will be through a theory driven realist evaluation, utilising mixed methods (interviews with staff and women, observational analysis and analysing routinely collected hospital and admin data) in three case sites in England. The study has a Project Advisory Group composed of five women who have recently given birth. ETHICS AND DISSEMINATION: The study has ethical approval (King's College London REC approval number: MRSP-20/21-20955, and, IRAS:289144). A dissemination plan will be fully created with the Project Advisory Group, and we anticipate this will include presenting at conferences, publications, webinars, alongside dissemination to the wider population through parent and baby groups, the media and charities. TRIAL REGISTRATION NUMBER: ISRCTN57127874.

Combining Realist approaches and Normalization Process Theory to understand implementation: a systematic review.

BACKGROUND: Realist approaches and Normalization Process Theory (NPT) have both gained significant traction in implementation research over the past 10 years. The aim of this study was therefore to explore how the approaches are combined to understand problems of implementation, to determine the degree of complementarity of the two approaches and to provide practical approaches for using them together. METHODS: Systematic review of research studies combining Realist and NPT approaches. Realist methodology is concerned with understanding and explaining causation, that is, how and why policies, programmes and interventions achieve their effects. NPT is a theory of implementation that explains how practices become normalised. Databases searched (January 2020) were ASSIA, CINAHL, Health Research Premium Collection via Proquest (Family Health Database, Health & Medical Collection, Health Management Database, MEDLINE, Nursing & Allied Health Database, Psychology Database, Public Health Database) and PsycARTICLES. Studies were included if the author(s) stated they used both approaches: a scientific Realist perspective applying the principles of Pawson and Tilley's Realist Evaluation or Pawson's Realist Synthesis and Normalization Process Theory either solely or in addition to other theories. Two authors screened records; discrepancies were reviewed by a third screener. Data was extracted by three members of the team and a narrative synthesis was undertaken. RESULTS: Of 245 total records identified, 223 unique records were screened and 39 full-text papers were reviewed, identifying twelve papers for inclusion in the review. These papers represented eight different studies. Extent and methods of integration of the approaches varied. In most studies (6/8), Realist approaches were the main driver. NPT was mostly used to enhance the explanatory power of Realist analyses, informing development of elements of Contexts, Mechanisms and Outcomes (a common heuristic in realist work). Authors' reflections on the integration of NPT and Realist approaches were limited. CONCLUSIONS: Using Realist and NPT approaches in combination can add explanatory power for understanding the implementation of interventions and programmes. Attention to detailed reporting on methods and analytical process when combining approaches, and appraisal of theoretical and practical utility is advised for advancing knowledge of applying these approaches in research. SYSTEMATIC REVIEW REGISTRATION: Not registered.

A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community.

This article critically examines how professional boundaries and hierarchies influence how end-of-life care is managed and negotiated between health and social care professionals. Our findings suggest there is uncertainty and lack of clarity amongst health and social care professionals regarding whose responsibility it is to engage, and document, the wishes of patients who are dying, which can lead to ambiguity in treatment decisions. We go on to explore the potential role of a new electronic system, designed to facilitate information sharing across professional boundaries, in shaping and bridging professional boundaries in the delivery of end-of-life care. We highlight potential negative impacts that may arise when health and social care groups are permitted varying levels of access to the system, and how this may be seen to reflect the value placed on their role in end-of-life care.

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.

'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.

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.