Public Health Research (Oct 2024)
Building research capacity and capability to enhance the quality of living and dying addressing advancing frailty through integrated care: the ALLIANCE partnership
Abstract
Background Frailty affects around 10% of people aged over 65 years, increasing to 65% of those over 90 years. This number is increasing. Older people with frailty are projected to become the largest future users of care services as they near end of life. Living with frailty increases vulnerability to sudden deterioration, fluctuating capacity and mortality risk. This leads to complex needs, requiring integrated care, and an approach orientated towards living with, as well as dying from, advancing frailty. However, accessing care in a timely manner can be difficult. Aims To develop a sustainable, cross-sectoral partnership to: identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty develop organisations in which to conduct research submit study proposal(s) for funding. Objectives To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care. To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty. To support provider services to become research ready. To establish Partnership-wide research questions and develop research proposals. Activities The Partnership brought together experts, by profession or experience (n = 244), across specialist palliative and geriatric care and local government, to improve the delivery of integrated care for older people with advancing frailty as they near end of life. Members included older people with frailty, unpaid carers, health, social and voluntary care professionals and academics, across the East Midlands, South East England and South West London. A survey of key contacts (n = 76) mapped and scoped the Partnership’s strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers’ research readiness. Forty-six key contacts responded. Most worked in the East Midlands (59%), in health care (70%) and in the community (58%). Survey findings were used to develop a service framework and to create a short list of potential research questions. Questions were refined and prioritised through coproduction with frail older people (n = 21), unpaid carer representatives (n = 7), health, social and voluntary care professionals (n = 11) and care home representatives (n = 3). The question chosen for bid development focused on ensuring what matters most to older people with frailty informs service development. This bid is currently being written. Partnership members were also supported to develop research readiness and enhance meaningful patient and public involvement by the development and curation of multiple resources. Reflections This work was challenging. The Partnership enabled the collaboration of diverse stakeholders and fostered opportunities to improve end-of-life care for older people with advancing frailty. However, the fluidity of the workforce, lack of finance to buy-out key contacts’ time, limited service integration across sectors, lack of common language and concepts across sectors, need to build research understanding and readiness, and minimal evidence of engaging frail older people approaching end of life in determining service provision and research, made achieving the initial goals overly ambitious. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty, and is currently coproducing a clinically applied, translational research proposal. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262. Plain language summary Older people living with frailty are at risk of ill health, disability, admission to hospital or long-term care, and of dying. Living with frailty means having multiple care needs that require the support of multiple providers and sectors. Care can be patchy, leaving families to provide and coordinate care, and quality of life for older people in their final years can be poor. Little research has studied how best to support older people with frailty as they near end of life, particularly as they move between care providers and sectors. Our Partnership brought together experts, by profession or experience, who were interested in improving this care in three English regions, the East Midlands, the South East and South West London. We identified 76 key contacts from service providers, voluntary care and unpaid carer representatives who had knowledge, interest and access to other interested individuals in their region. We conducted a survey to understand current services and research expertise. Forty-six key contacts completed the survey. Survey findings were used to develop a service framework for older people living and dying with frailty and create a short list of potential research questions which were then refined and prioritised. The research question chosen for bid development focuses on ensuring what matters most to older people with frailty informs service development. The Partnership highlighted that despite accepting the importance of care coordination, there remain serious challenges in improving services, and promoting research capacity. These challenges included few services engaging older people to support service development, services rarely working together across sectors, lack of a common language throughout sectors, a rapidly changing workforce and the need for funding to support collaborators across all sectors. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty and is coproducing a research proposal.
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