Helene Elliott-Button

Social homecare workers (HCWs) provide support with activities of daily living in peoples’ own homes. They often lack the training and support needed to provide the personal, social and domestic care that enables people to die at home. Little is known about their support and training needs. We aimed to understand the experiences of HCWs, their clients and family and friends and other professionals involved in community end‐of‐life care (EoLC) to identify the training and support needs of HCWs. Using a case study approach set across three regions in England, we interviewed 133 participants (41 HCWs; 22 HCW managers; 18 people in receipt of care; 20 family and friends providing care; 32 other health and social care professionals) using in‐depth interviews. Reflexive thematic analysis and matrix analysis were used to explore the data within and between case studies, guided by Bronfenbrenner’s Adapted Ecological Systems Theory to understand the wider social, economic and policy contexts in which homecare takes place. We found that HCWs want to provide quality care but often lack the training and support required to enable this in the complex and changeable situation at EoL. We identified four subthemes relating to training and support needs: feeling prepared to deliver EoLC, accessing and availability of training, sources of knowledge and learning, specific learning needs and gaps. There was inconsistency in terms of access to training, quality of content, its accessibility and usefulness and support provided by managers. Our findings highlight the need to improve access for HCWs to training with specific EoLC content. We make recommendations for (i) the development of the structure and content of training materials, (ii) the commissioning and oversight of homecare provision and (iii) how health and social care practitioners can work collaboratively with HCWs in the community.

Social homecare workers (HCWs) play important roles in supporting people with care and support needs who wish to remain at home when approaching end‐of‐life. Given the difficulties in recruiting and retaining staff within the homecare sector and the challenging nature of end‐of‐life care, it is essential to understand the experiences and needs of this workforce and to recognise the challenges they face and support they require. This paper reports findings in respect of the experiences of HCWs providing end‐of‐life care. The data reported here is part of a study which aimed to inform improvements to the quality and sustainability of homecare at end‐of‐life and to develop training resources. A multiple case study approach was undertaken within three contrasting sites in England, delineated by local authority boundaries and chosen to reflect different demographic characteristics. Semistructured interviews were carried out with 133 participants who included HCWs, managers, clients, carers (families/friends), health and social care practitioners, and service commissioners. Interviews were supported by Pictor, a visual elicitation method used to map networks and relationships. Data were analysed using reflexive thematic and matrix analyses. The findings presented here highlight three themes in respect of HCW experiences when providing care at end‐of‐life: unique privileges and challenges; relational aspects of care important at end‐of‐life; and the multiagency challenges and opportunities experienced. Wider factors such as health and social care policy and the care sector environment, both of which influence HCW experiences, were also considered. The findings are discussed in the context of an adaptation of Bronfenbrenner’s Ecological Systems Theory to explore complexity in end‐of‐life care, and are related to current evidence with suggestions made for policy, practice and future research.

Background: Minority ethnic populations face persistent inequities in end-of-life care, yet research often fails to capture these disparities due to methodological limitations. Robust approaches are urgently needed to investigate and address these inequities. Aim: To develop best practice principles for conducting qualitative and quantitative research on ethnicity in palliative and end of life care. Design: We conducted a modified Delphi study online, comprising one qualitative round and two quantitative rounds. Round 1 collected open-ended responses to generate 97 statements. In rounds 2 and 3, participants rated these on a 5-point Likert scale; statements were retained if ⩾75% rated them ‘very’ or ‘extremely important’. Consensus statements informed the development of guiding principles, which were further refined during a stakeholder workshop. Participants were UK-based and included minority ethnic patients, carers, community representatives, researchers, health professionals, and palliative care specialists. Results: Forty-five participants completed round 1, 43 round 2, and 45 round 3. Of 97 statements, 78 (80%) reached consensus in round 2, and all 78 (100%) in round 3. Seventeen stakeholders attended the workshop, resulting in 13 consensus-based guiding principles. Conclusions: This UK-based Delphi established 13 key principles to strengthen research involving minority ethnic populations in palliative and end-of-life care. Implementing these principles will help address inequities and improve the quality and impact of future studies, with validation needed in international contexts.

Background: Homecare workers (paid workers without professional qualifications who provide care for people within their own homes) are crucial providers of end-of-life care (the last 6 months of life) but are not part of the healthcare multidisciplinary team. Little is known about the homecare worker role within interprofessional working practices. Aim: To explore the experiences of end-of-life homecare provision, from multiple perspectives. Design: A qualitative multiple case study using semi-structured interviews, and the option to create a Pictor chart – a visual diagram of relationships between those involved in care provision. Data were analysed using a reflexive thematic analysis. An adaptation of Bronfenbrenner’s ecological systems theory was used to inform the analysis. Setting/participants: Homecare workers and managers, people receiving care, carers, social, and healthcare practitioners from three economically and culturally diverse geographical regions within England. Results: 133 participants were recruited (case 1 = 49, case 2 = 34, case 3 = 49). Although examples of good practice were seen, common barriers to collaboration between health and social care practitioners and homecare workers were identified: lack of healthcare practitioner knowledge/training on homecare workers’ role and its value, and poor communication (gatekeeping by managers, asynchronous working practices, restricted access to documentation and systems). Conclusion: The homecare worker role was poorly understood and undervalued with inadequate communication and interaction between practitioners, potentially impacting on quality of care. Collaborative practice is necessary for provision of high-quality care, but we found this was often absent due to knowledge, professional, and organisational barriers. Further research should explore suggested strategies to address the barriers identified.