Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

Researching minoritised communities in palliative care: An agenda for change.

BACKGROUND: Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and moral issues. Without the critical reflection of methods of study and reporting of findings, researchers may inadvertently compromise their contribution to reducing injustices and perpetuating racism. AIM: To examine key evidence of the place of minoritised communities in palliative care research to devise recommendations that improve the precision and rigour of research and reporting of findings. METHODS: Narrative review of articles identified from PubMed, CINAHL and Google Scholar for 10 years augmented with supplementary searches. RESULTS: We identified and appraised 109 relevant articles. Four main themes were identified (i) Lack of precision when working with a difference; (ii) 'black box epidemiology' and its presence in palliative care research; (iii) the inclusion of minoritised communities in palliative care research; and (iv) the potential to cause harm. All stymie opportunities to 'level up' health experiences and outcomes across the palliative care spectrum. CONCLUSIONS: Based on the findings of this review palliative care research must reflect on and justify the classification of minoritised communities, explore and understand intersectionality, optimise data quality, decolonise research teams and methods, and focus on reducing inequities to level up end-of-life care experiences and outcomes. Palliative care research must be forthright in explicitly indentifying instances of structural and systemic racism in palliative care research and engaging in non-judgemental debate on changes required.

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

BACKGROUND: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. AIM: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. DESIGN: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. SETTING/PARTICIPANTS: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. RESULTS: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. CONCLUSIONS: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.

Enhancing equity and diversity in palliative care clinical practice, research and education.

Health disparities in palliative care are preventable consequences of structural discrimination and marginalization. The first step in addressing a problem is recognizing there is one and devotion to fully understanding its multifaceted nature. Palliative care clinicians, educators and researchers must prioritize investigating and mitigating the effects of racial, social, and intersectional injustice.

Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.

OBJECTIVES: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia. METHODS: MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. RESULTS: 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. CONCLUSION: Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.

Symptom clusters, associated factors and health-related quality of life in patients with chronic obstructive pulmonary disease: A structural equation modelling analysis.

AIMS AND OBJECTIVES: To identify symptom clusters and develop a symptom cluster model among people living with chronic obstructive pulmonary disease (COPD). BACKGROUND: The examination of symptom clusters in COPD patients is an emerging field of scientific inquiry directed towards symptom management. However, no studies have modelled the relationships among symptom clusters, associated factors and health-related quality of life. DESIGN: A cross-sectional design with convenience sampling following STROBE guidelines. METHODS: Data were collected from 450 COPD participants in three university teaching hospitals. Participants were invited to complete a structured questionnaire comprised of a socio-demographic/clinical questionnaire, Integrated Palliative Care Outcome Scale and Clinical Respiratory Questionnaire. Exploratory factor analysis and confirmatory factor analysis were used to identify symptom clusters. Structural equation modelling was used to examine the proposed model. RESULTS: The respiratory related symptom cluster, psychological symptom cluster and cough-insomnia related symptom cluster were identified. The final model demonstrated a good fit with the data. Gender, stage of disease and monthly income were significant factors associated with symptom clusters. Respiratory related and cough-insomnia related symptom clusters had a direct negative impact on health-related quality of life, while the psychological symptom cluster was found to have a direct and indirect negative effect on health-related quality of life. CONCLUSIONS: Final COPD symptom cluster model should serve as a framework to guide intervention research targeting symptom clusters to improve health-related quality of life of people living with COPD. RELEVANCE TO CLINICAL PRACTICE: Nurses should be especially attuned to identify those at most risk of facing a higher symptom burden in this case those who are female, have advanced stage COPD and/or lower income. During the clinical symptom assessment, nurses should pay attention to the close relationships among symptoms within a cluster to identify any 'trigger' symptom that could cause the development or exacerbation of other symptoms.

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.

BACKGROUND: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. AIM: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. DESIGN: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). DATA SOURCES: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with 'QualSyst'. RESULTS: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members' concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. CONCLUSIONS: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders' perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Does ethnicity affect pain management for people with advanced disease? A mixed methods cross-national systematic review of 'very high' Human Development Index English-speaking countries.

BACKGROUND: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups. METHODS: Mixed methods systematic review. The primary outcome measure was differences in receiving pain medication between people from different racial and ethnic groups. Five electronic databases were searched. Two researchers independently assessed quality using JBI checklists, weighted evidence, and extracted data. The quantitative findings on the primary outcome measure were cross-tabulated, and a thematic analysis was undertaken on the mixed methods studies. Themes were formulated into a conceptual/thematic matrix. Patient representatives from UK ethnically diverse groups were consulted. PRISMA 2020 guidelines were followed. RESULTS: Eighteen papers were included in the primary outcome analysis. Three papers were rated 'High' weight of evidence, and 17/18 (94%) were based in the USA. Ten of the eighteen (56%) found no significant difference in the pain medication received between people of different ethnic groups. Forty-six papers were included in the mixed methods synthesis; 41/46 (89%) were based in the USA. Key themes: Patients from different ethnically diverse groups had concerns about tolerance, addiction and side effects. The evidence also showed: cultural and social doctor-patient communication issues; many patients with unmet pain management needs; differences in pain assessment by racial group, and two studies found racial and ethnic stereotyping. CONCLUSIONS: There was not enough high quality evidence to draw a conclusion on differences in receiving pain medication for people with advanced disease from different racial and ethnic groups. The mixed methods findings showed commonalities in fears about pain medication side effects, tolerance and addiction across diverse ethnic groups. However, these fears may have different foundations and are differently prioritised according to culture, faith, educational and social factors. There is a need to develop culturally competent pain management to address doctor-patient communication issues and patients' pain management concerns. TRIAL REGISTRATION: PROSPERO- CRD42020167890 .

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

How can we achieve person-centred care for people living with HIV/AIDS? A qualitative interview study with healthcare professionals and patients in Ghana.

Although person-centred care (PCC) has been identified as a means to achieve the 90-90-90 targets, limited research has considered PCC in low- or middle-income settings. We aimed to explore what constitutes PCC from the perspectives of PLWHA and healthcare professionals (HCP) in Ghana. We conducted 39 semi-structured qualitative interviews with PLWHA and HCP in two community clinics in Ghana, West Africa. Interviews were analysed deductively using thematic analysis, and sampling continued until thematic saturation was achieved. Twenty-four PLWHA (median age 42.5, 50% female) and 15 HCP (median age 34, 53% female) were interviewed. Three interconnected themes emerged across PLWHA and HCP: (1) care structures not built around the person, (2) priority outcomes and components of PCC and (3) re-engineering HIV care to be more person-centred. A conceptual model showing the overlap between PLWHA and HCP's perspectives of PCC and a framework to inform PCC delivery have been developed from these findings. Our data revealed that PLWHA want PCC to improve care outcomes, well-being and quality of life. Further testing of this model is required to inform PCC delivery for PLWHA in low- and middle-income countries.

Feasibility and acceptability of a culturally adapted advance care planning intervention for people living with advanced cancer and their families: A mixed methods study.

BACKGROUND: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption. AIM: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals. METHODS: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants' view on their involvement in the study. Patients' medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis. RESULTS: N = 29 participants (n = 10 patients; n = 10 family members and n = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components (n = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives' experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research. CONCLUSION: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.

Understanding usual care in randomised controlled trials of complex interventions: A multi-method approach.

BACKGROUND: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. AIM: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. DESIGN: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. SETTING/PARTICIPANTS: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. RESULTS: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. CONCLUSIONS: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.

What influences patients' decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.

BACKGROUND: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. AIM: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. METHOD: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. RESULTS: Forty-five participants were interviewed (n = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. CONCLUSION: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.

The conceptual models and mechanisms of action that underpin advance care planning for cancer patients: A systematic review of randomised controlled trials.

BACKGROUND:: No systematic review has focused on conceptual models underpinning advance care planning for patients with advanced cancer, and the mechanisms of action in relation to the intended outcomes. AIM:: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining the components, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes. DESIGN:: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrative synthesis was used for data analysis. DATA SOURCES:: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGrey with reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials with advance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for quality appraisal. RESULTS:: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through which advance care planning improved outcomes comprised (1) increasing patients' knowledge of end-of-life care, (2) strengthening patients' autonomous motivation, (3) building patients' competence to undertake end-of-life discussions and (4) enhancing shared decision-making in a trustful relationship. Samples were largely highly educated Caucasian. CONCLUSION:: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, they identify the individual behavioural change. Strengthening patients' motivation and competence in participating advance care planning discussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels and ethnicities in non-Western countries should be a research priority.

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study.

BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Seeing is believing - healthcare professionals' perceptions of a complex intervention to improve care towards the end of life: A qualitative interview study.

BACKGROUND: Methods to improve care, trust and communication are important in acute hospitals. Complex interventions aimed at improving care of patients approaching the end of life are increasingly common. While evaluating outcomes of complex interventions is essential, exploring healthcare professionals' perceptions is also required to understand how they are interpreted; this can inform training, education and implementation strategies to ensure fidelity and consistency in use. AIM: To explore healthcare professionals' perceptions of using a complex intervention (AMBER care bundle) to improve care for people approaching the end of life and their understandings of its purpose within clinical practice. DESIGN: Qualitative study of healthcare professionals. Analysis informed by Medical Research Council guidance for process evaluations. SETTING/PARTICIPANTS: A total of 20 healthcare professionals (12 nursing and 8 medical) interviewed from three London tertiary National Health Service hospitals. Healthcare professionals recruited from palliative care, oncology, stroke, health and ageing, medicine, neurology and renal/endocrine services. RESULTS: Three views emerged regarding the purpose of a complex intervention towards the end of life: labelling/categorising patients, tool to change care delivery and serving symbolic purpose indirectly affecting behaviours of individuals and teams. All impact upon potential utility of the intervention. Participants described the importance of training and education alongside implementation of the intervention. However, adequate exposure to the intervention was essential to witness its potential added value or embed it into practice. CONCLUSION: Understanding differing interpretations of complex interventions is essential. Consideration of ward composition, casemix and potential exposure to the intervention is critical for their successful implementation.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics. DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion. RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

BACKGROUND: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. AIMS: To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. DESIGN: Qualitative focus groups. SETTING/PARTICIPANTS: Volunteers from a large teaching hospital were purposively sampled. RESULTS: Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. CONCLUSION: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK.

BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. METHODS: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. RESULTS: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. CONCLUSIONS: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training.