Title: Equipping community services to meet the palliative care needs of older people with frailty approaching the end of life; a mixed methods study
Funder: Health Education England

Abstract: Background Frailty is a leading cause of death in older people1 and frail elders are projected to be the main recipients of palliative care(PC)2. Elders living and dying with frailty require integrated services3,4, including PC5,6. However, because their specific PC needs are poorly understood7 and service response is underdeveloped8,9 frail elders are less likely to receive PC. Innovative multi-agency community PC services are emerging8,10. However, there is no evidence on the key features and service configurations necessary to deliver increased quality care and decreased burden on frail elders/families, e.g. inappropriate hospital admissions and NHS costs, averaging 10,000 per person in year before death11. Study Aim To identify and understand PC needs of frail elders, develop the evidence-base for community PC provision and co-design resources to better access and deliver PC. Methods Four layered Phases Phase1 (1-12months) Objective: Identify core frail elders' PC needs. A Modified Delphi study and collaborative event11 informed by evidence and key stakeholder expertise, will determine needs, mapped onto PC domains12. Output Consensus reached and a composite film of frail elders' views of their PC needs to inform following Phases. Phase2 (12-24months) Objective: Map and categorize national data on care agency responses to PC needs. An England-wide survey13 of stakeholders providing innovative multi-agency PC community services. Content and analysis is underpinned by existing best guidance on delivering community PC14,15. Output Synthesis of current practice and identified innovative PC components to inform and evaluate in Phase4. Sample for Phase3. Phase3 (24-44months) Objective: Multi-faceted investigation of the experiences needs and service response to frail elders/families. Prospective case study research16 in three geographically diverse sites delivering innovative multi-agency PC to frail elders. Data collected from serial patients/family interviews and PROMS17, care agency focus groups and case notes/service literature. Thematic case and cross case analysis is informed by Donabedian's conceptualisation of care quality18; and trajectories of uncertainty in progressive illness19, 20. Output In-depth understanding of PC needs over time, care experiences, service response, fit and core components to inform Phase4. Phase4 (44-60months) Objective: Develop Service Framework and tools to equip community services to meet PC needs and carers in accessing services. Integrative analysis21 informed by Damschoder et al's22 innovation framework will define key service features. Stakeholders, PPI and study management groups will subsequently co-design19 resources through two staggered workshops with interim development. Output Service Framework on key features of PC, guidance to facilitate adoption and a tool for carers to self-identify triggers to access PC. Dissemination Supported by PPI at local, regional and national level. Public engagement through a study website, social media, PPI blog. Conference presentations, publications in three open-access journals, targeting policy and practice decision-makers. Resources will be disseminated to research participants for initial evaluation. Further funding will test implementation, spread and cost of resources. Impact Frail Elders: Understanding PC Needs, resulting in better services and care outcomes Carers: Up-skilling via a co-designed tool to trigger PC input and reduce preventable NHS costs Service Providers: Equipping tailored community PC service for frail elders via a Service Framework and guidance

Lay abstract: This study will help home care services to meet the needs of severely frail elders who are approaching the end of their lives, and their families. Background: More older people are living and dying with frailty. Frailty is age-related. It describes the gradual loss of reserves that help older people bounce back after an illness. Severely frail elders do not have this ability. They often require many health and social care services, such as palliative care. Palliative care makes you as comfortable as possible if your illness is incurable. Currently we lack understanding of frail elders' particular palliative care needs and are not sure of the right community services. Families maybe unsure about when and who to call for help. Therefore many severely frail elders, who want to be at home and prioritise quality of life, spend their last year undergoing unnecessary treatments. Older people with severe frailty need co-ordinated, new approaches to their palliative care needs to prevent this. This study will improve services and outcomes by: Understanding the palliative care needs of severely frail elders, supporting families to work with palliative care services and reduce unnecessary interventions and equipping community services to provide palliative care for frail elders. To ensure a consistently high-quality service. There are four research phases. Phase 1. Defining and agreeing the core palliative care needs: We will agree the most important palliative care needs of frail elders. We will do this through combining research with the opinions of older people, their families and key care agencies. Frail elders will have an opportunity to share their views through a film of their discussions. Phase 2. Establishing current practice in extending community provision of Palliative Care for frail elders: An England-wide survey, informed by Phase 1, will show how community services are currently working. This will help us understand the key palliative care requirements of frail elders. We will choose three services who have developed their community services to care for frail elders at the end of their lives for detailed investigation in Phase 3. Phase 3. Collecting both patient and family experiences and service response over a year: We will invite participation from patients, their families and care agencies from three sites across England who deliver home care for frail elders at the end of their lives. Three-monthly interviews and patient responses, over a year, will capture experiences and the response of services. We will gain an in-depth understanding of patient and family need. Changes over time and the causes of services responses will be noted. Phase 3 will also identity the important parts and structures of services that meet the palliative care needs of severely frail elders. Phase 4. Developing key features and resources to implement learning in practice: This phase will combine information across the study. We will identify how best to provide multi-agency community palliative services for frail elders at the end of their life. Workshops involving patients, carers and clinicians will lead to the development of resources. This will help spread the findings across the NHS. We will create a tool for families to help them partner in providing palliative care. Information from Phase 3 will underpin tool development. Public and Patient Involvement: On-going conversation with frail elders and their families will shape all aspects of this research. Flexible arrangements and appropriate resourcing will maximise involvement. Sharing Information: The findings of this research will be accessible to older people, their families and professionals. We will do this in different ways, including through older people's groups and social media. As well as sharing findings though publications and communications with policy and practice decision-makers.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE