Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

Mesothelioma palliative care needs: supporting patients and families with new research-based resources.

BACKGROUND: Mesothelioma is a rare cancer without cure. Clinical guidelines recommend the timely provision of palliative/supportive care; however, a new study identified barriers to achieving this ambition. OBJECTIVE: The study aimed to explore palliative care needs and the role of Mesothelioma Clinical Nurse Specialists (MCNSs); and to develop resources to address study findings. METHODS: The mixed-methods study included a literature review, focus groups, interviews and surveys. RESULTS: The study highlighted the important role of the MCNSs in palliative care and the need to: address disjointed care; improve support for families; and explain the benefits of palliative care for patients/families. A co-production approach developed an animation for patients/families to demystify palliative care and explain the benefits of early-stage engagement; and an infographic targeted at community and primary care professionals. Recommendations for community nursing practice are described.

Existential suffering in the day to day lives of those living with palliative care needs arising from chronic obstructive pulmonary disease (COPD): A systematic integrative literature review.

BACKGROUND: The impact of living with palliative care needs arising from COPD disrupts an individual's existential situation. However, no comprehensive synthesis of existing research has been published to determine the presentation and impact of existential suffering. AIM: To provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. DESIGN: This is an integrative review paper, undertaken using the methodological approach developed by Soares and reported in accordance with PRISMA guidelines. Data analysis was undertaking using an integrated convergent synthesis approach. DATA SOURCES: Nine electronic databases were searched from April 2019 to December 2019. A second search was undertaken in January 2021 to identify recently published papers meeting the inclusion and exclusion criteria. No date restrictions were imposed. Only papers published in the English Language were considered for inclusion. Empirical research papers employing qualitative and/or quantitative methodologies and systematic literature reviews were included. Articles were accepted for inclusion if they discussed any component of existential suffering when living with COPD and palliative care needs. RESULTS: Thirty-five papers were included within this review comprising of seven systematic reviews, 10 quantitative studies and 18 qualitative studies. The following themes relating to existential suffering were found: Liminality, Lamented Life, Loss of Personal Liberty, Life meaning and Existential isolation. The absence of life meaning, and purpose was of most importance to participants. CONCLUSIONS: This review suggests existential suffering is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact. Further research is required to understand the essential components of an intervention to address existential suffering for this patient group, to ensure holistic palliative care delivery.

Employment and family caregiving in palliative care: An international qualitative study.

BACKGROUND: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. AIM: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries - the United Kingdom (UK), Aotearoa New Zealand and Canada. DESIGN: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. RESULTS: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. CONCLUSION: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment.

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

BACKGROUND: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. AIM: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. DESIGN: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. SETTING/PARTICIPANTS: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. RESULTS: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. CONCLUSION: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists.

AIM: To explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families. DESIGN: A qualitative descriptive approach using focus group and interview methods. METHODS: Focus groups and semi-structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan-Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper. RESULTS: Four main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID-19 on palliative care for mesothelioma patients. CONCLUSION: This study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care. IMPACT: By acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review.

BACKGROUND: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. AIM: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. DESIGN: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). DATA SOURCES: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. RESULTS: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of 'uncertainty' was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. CONCLUSION: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians' play in providing generalist palliative care for people with mesothelioma and their carers.

Changing the eligibility criteria for welfare payments at the end of life - a budget impact analysis for England and Wales.

BACKGROUND: Terminal illness can cause a financial burden for many households. In England and Wales, fast-track access to welfare payments is available through special rules for the terminally ill (SRTI). Individuals are eligible for SRTI if they are judged to have 6 months or less to live. This criterion has been criticised as lacking a clinical basis, and being unfair for people with conditions where life-expectancy is difficult to accurately assess. AIM: To conduct a budget impact analysis on the possible increase in expenditure of personal independence payments (PIP) following a change in England and Wales to SRTI so that everyone with a terminal illness is eligible. METHODS: The fraction of individuals with a given long-term condition was estimated by combining data from the Health Survey for England, the Office for National Statistics (ONS) and the Department for Work and Pensions. Logistic growth modelling and ONS population projections were used to project PIP expenditure from 2020 to 2025. The increased expenditure was calculated for hypothetical scenarios which may occur following an SRTI regime change, specifically an increase of 1, 2 and 3 percentage points in the fraction of individuals claiming PIP under SRTI. Data from the literature on the projected prevalence of mild, moderate and severe dementia was used to calculate the cost if everyone with a given severity of dementia claimed PIP under SRTI. RESULTS: Under the current SRTI regime, PIP expenditure under SRTI was projected to increase from £0.231bn in 2020 to £0.260bn in 2025, compared to equivalent figures of £11.1bn and £12.7bn under non-SRTI. Expenditure in 2025 following an increase in the fraction claiming of 1, 2 and 3 percentage points was projected to be £1.1bn, £1.9bn and £2.7bn respectively. In 2025, PIP expenditure was estimated to be £7.4bn if everyone with dementia claimed under SRTI, compared to £6.4bn if only individuals with moderate and severe dementia claimed, and £4.7bn if only individuals with severe dementia claimed. CONCLUSION: Changes in SRTI are projected to lead to increases in PIP expenditure. However, the increased cost is small compared to expenditure under non-SRTI, especially as the highest costs were associated with extreme scenarios.

What is the prevalence of loneliness amongst older people living in residential and nursing care homes? A systematic review and meta-analysis.

BACKGROUND: the number of older people living in residential and nursing care homes is rising. Loneliness is a major problem for older people, but little is known about the prevalence of loneliness amongst older people living in care homes. AIM: to undertake a systematic review of literature on the prevalence of moderate and severe loneliness amongst older people living in residential and nursing care homes. DESIGN: we systematically reviewed the databases Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Embase, Scopus, Cochrane and Allied and Complementary Medicine Database (AMED) from inception to January 2019. We included all studies reporting data on the prevalence of loneliness amongst older people living in care homes. A random-effects meta-analysis was conducted on all eligible data. RESULTS: a total of 13 articles were included, representing 5,115 participants (age range of 55-102 years, mean age 83.5 years, 68% female). There was a significant variation between studies in estimates of prevalence. The prevalence of moderate loneliness ranged from 31 to 100%, and the prevalence of severe loneliness ranged from 9 to 81%. The estimated mean prevalence of 'moderate loneliness' was 61% (95% confidence interval (CI): 0.41, 0.80). The estimated mean prevalence of 'severe loneliness' was 35% (95% CI: 0.14, 0.60). CONCLUSION: the prevalence of both moderate loneliness and severe loneliness amongst care home residents is high enough to warrant concern. However, the significant variation in prevalence estimates warrants further research. Future studies should identify which interventions can address loneliness and promote meaningful social engagement to enhance quality of life in care homes.

The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic.

BACKGROUND: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. AIM: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. DESIGN: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. DATA SOURCES: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. RESULTS: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to 'systems' (community providers feeling disadvantaged in terms of receiving timely information and protocols), 'space' (recognised need for more care in the community), 'staff' (training needs and resilience) and 'stuff' (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). CONCLUSIONS: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

Equity and the financial costs of informal caregiving in palliative care: a critical debate.

BACKGROUND: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.

BACKGROUND: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. AIM: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. DESIGN: Qualitative evidence synthesis using an integrative review approach and thematic analysis. DATA SOURCES: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. RESULTS: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. CONCLUSION: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study.

BACKGROUND: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. AIM: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). DESIGN: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. RESULTS: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. CONCLUSION: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support.

Predictors of patient-related benefit, burden and feeling safe in relation to hospital admissions in palliative care: A cross-sectional survey.

BACKGROUND: Research exploring patient experience of palliative care in the hospital setting has previously been limited to negative aspects of care. However, recent studies have shown that patients with palliative care needs experience benefits being in hospital. Little is known about how experiences of benefit and burden vary according to socio-demographic and illness-related factors and how these experiences influence patient preferences to return to hospital. AIM: To identify factors influencing experiences of benefit and burden and the predictors associated with a preference to return to hospital in palliative care. DESIGN: Cross-sectional design using a questionnaire survey. SETTING/PARTICIPANTS: In total, 116 hospital inpatients admitted with palliative care needs in an urban hospital in New Zealand. Recruitment was from an oncology ward, four general medical wards and a respiratory ward. RESULTS: Those living in more deprived areas experienced more benefit being in hospital ( F(4, 109) = 3.15, p = 0.017), while younger people ( F(4, 109) = 4.44, p = 0.00) and those from Asian or Pacific cultures ( F(2, 111) = 7.78, p = 0.000) experienced more burden. Those with a non-cancer diagnosis felt less safe in hospital ( p = 0.04). 'Feeling safe' was a significant ( B = 0.14, p = 0.03) predictor for a preference to return to hospital. CONCLUSION: Deprivation, diagnosis, age and ethnicity influenced experiences of benefit and burden in hospital. 'Feeling safe' was a significant predictor for a preference to return to hospital. Further research is needed to understand why certain patient factors influence experiences of hospitalisation and how 'feeling safe' can be replicated in other care environments.

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review.

BACKGROUND: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. AIM: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. DESIGN: A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. DATA SOURCES: The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. RESULTS: A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. CONCLUSION: The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies.

What do we know about different models of providing palliative care? Findings from a systematic review of reviews.

BACKGROUND: A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. AIM: To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. DESIGN: A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. RESULTS: Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. CONCLUSION: Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models.

Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries.

BACKGROUND: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. AIMS: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. DESIGN: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. SETTING/PARTICIPANTS: A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ⩾18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. RESULTS: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. CONCLUSION: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.

STAKEHOLDER INVOLVEMENT THROUGHOUT HEALTH TECHNOLOGY ASSESSMENT: AN EXAMPLE FROM PALLIATIVE CARE.

OBJECTIVES: Internationally, funders require stakeholder involvement throughout health technology assessment (HTA). We report successes, challenges, and lessons learned from extensive stakeholder involvement throughout a palliative care case study that demonstrates new concepts and methods for HTA. METHODS: A 5-step "INTEGRATE-HTA Model" developed within the INTEGRATE-HTA project guided the case study. Using convenience or purposive sampling or directly / indirectly identifying and approaching individuals / groups, stakeholders participated in qualitative research or consultation meetings. During scoping, 132 stakeholders, aged ≥ 18 years in seven countries (England, Italy, Germany, The Netherlands, Norway, Lithuania, and Poland), highlighted key issues in palliative care that assisted identification of the intervention and comparator. Subsequently stakeholders in four countries participated in face-face, telephone and / or video Skype meetings to inform evidence collection and / or review assessment results. An applicability assessment to identify contextual and implementation barriers and enablers for the case study findings involved twelve professionals in the three countries. Finally, thirteen stakeholders participated in a mock decision-making meeting in England. RESULTS: Views about the best methods of stakeholder involvement vary internationally. Stakeholders make valuable contributions in all stages of HTA; assisting decision making about interventions, comparators, research questions; providing evidence and insights into findings, gap analyses and applicability assessments. Key challenges exist regarding inclusivity, time, and resource use. CONCLUSION: Stakeholder involvement is feasible and worthwhile throughout HTA, sometimes providing unique insights. Various methods can be used to include stakeholders, although challenges exist. Recognition of stakeholder expertise and further guidance about stakeholder consultation methods is needed.

Challenges in building interpersonal care in organized hospital stroke units: The perspectives of stroke survivors, family caregivers and the multidisciplinary team.

AIMS: To explore the organized stroke unit experience from the multiple perspectives of stroke survivor, family carer and the multi-disciplinary team. BACKGROUND: Organized stroke unit care reduces morbidity, mortality and institutionalization and is promoted globally as the most effective form of acute and postacute provision. Little research has focused on how care is experienced in this setting from the perspectives of those who receive and provide care. DESIGN: This study used a qualitative approach, employing Framework Analysis. This methodology allows for a flexible approach to data collection and a comprehensive and systematic method of analysis. METHOD: Semi-structured interviews were undertaken during 2011 and 2012 with former stroke unit stroke survivors, family carers and senior stroke physicians. In addition, eight focus groups were conducted with members of the multi-disciplinary team. RESULTS: One hundred and twenty-five participants were recruited. Three key themes were identified across all data sets. First, two important processes are described: responses to the impact of stroke and seeking information and stroke-specific knowledge. These are underpinned by a third theme: the challenge in building relationships in organized stroke unit care. CONCLUSIONS: Stroke unit care provides satisfaction for stroke survivors, particularly in relation to highly specialized medical and nursing care and therapy. It is proposed that moves towards organized stroke unit care, particularly with the emphasis on reduction of length of stay and a focus on hyper-acute models, have implications for interpersonal care practices and the sharing of stroke-specific knowledge.