Title: Understanding the varied experiences of frailty in older age with respect to ethnicity: a mixed methods approach
Funder: Economic and Social Research Council

Abstract: All objectives are part of an interlinked project, using advanced quantitative and creative, innovative qualitative methods and as such are integral to the project. The order of these objectives reflects the need to map the factors shaping frailty at macro, meso and micro levels and all are of equal priority. 1. To map the relationship between frailty and ethnicity to trace how frailty varies between older people of different ethnic groups who are clinically classified as frail. 2. To explore how life course inequalities such as family situation, housing, social class and gender shape the experience of frailty among older BAME people. Objectives 1 and 2 will be fulfilled by analysis of the data set Understanding Society to trace how frailty among BAME older people is experienced differently according to socio-economic and cultural background as well as resources together with the construction of an innovative population-level Frailty Index designed to highlight differences in how frailty is either reported or compensated for in daily life by ethnic minority groups.. 3. To explore how BAME older people of different and intersectional demographic groups (gender, social class, location, faith etc) perceive frailty as a label and a lived experience. Objective 3 will be explored through photovoice (a participatory action research method using photography) carried out with a sample of up to 50 older people from a variety of ethnic groups identified by the cluster analysis. Follow up biographical narrative interviews with a purposive sample of photovoice participants will be conducted longitudinally over a two year period (up to 75 in all). 4. To explore how health and social care professionals and other key stakeholders a) perceive frailty and b) approach the support and management of frail older BAME people. Objective 4 will be met by conducting semi-structured interviews and focus groups with up to 50 health and social care professionals/key stakeholders, including GPs, hospital doctors, nurses and others, drawn from the National Clinical Frailty network, policy makers and social care providers. 5. To raise awareness of the wider determinants of frailty in order to impact on clinical approaches and public discourse with the view of highlighting ways of supporting more positive ageing experiences. Objective 5 will be met via a) a public facing, free and accessible photographic exhibition, drawn from the photovoice work to encourage wider discussion and reflection; and b) an educational toolkit to be integrated into clinical education programmes to reframe clinical narratives of frailty, providing rich insight into a first-person perspective of living with frailty and its intersection with health and care approaches c) a patient-level person-centred frailty 'cultural competence' toolkit. All three will be co-produced with older people. 6. To disseminate our work and reach a number of wider audiences. Objective 6 will be met by producing and presenting a range of papers, both academic and focused on policy and lay audiences including in social sciences journals, medical journals and the humanities and associated international conferences. We will also write reports and briefings to be disseminated with the help of our partner organisations. We will create a short animation/data visualisation that present the result of our findings back to the older participants, volunteers, their carers and advocacy organisations, in a vivid and accessible way, together with the tools and toolkits we have designed as a result that will be of direct benefit to them

Lay abstract: While the care and management of frailty in older people is increasingly important, Black, Asian and Minority Ethnic (BAME) experiences of frailty are under researched and thus generally not accounted for in social policy or clinical care designed to support frail older people. In everyday language, 'frail' is a term that is often used to describe older people struggling with mobility and independence. It is also a term that is increasingly used by health professionals. Older patients in the UK are now screened for frailty in routine healthcare appointments. Although frailty is not an experience that is exclusive to older people, it is often associated with, and experienced towards, the end of life and in deep old age. This experience is different for different people and depends on a variety of factors. These factors include individual bodies but also things like ethnicity, being male or female, education, housing and environment, cultural beliefs and religion, family and social networks, economic situation and hobbies/interests. The relationship between such issues and frailty are often missed when older people are screened but can have a detrimental impact on their experience of frailty. For these reasons, the experience of frailty is not equal for all. Few studies have explored this relationship and fewer still have explicitly addressed how ethnicity affects the experience of ageing and frailty. As a result there is a persistent health gap between White and BAME older people particularly striking in later life. Consequently, this project seeks to explore the factors that are important in the experience and management of frailty by talking to a wide range of older people from different ethnicities. To do this, we will first analyse data from a large study of 40,000 households, of which about 11,500 participants are from an ethnic minority background, called 'Understanding Society' to highlight the relationship between frailty and ethnicity. We will use this information to select particular groups of older people to talk to in order to explore this in more depth. Participants will be selected in accordance with factors that highlight a particular impact on the experience of living with frailty, including ethnicity and gender, class, place and social context. We will look at the different experiences experienced by older people from a variety of ethnic backgrounds, including Bangladeshi, Indian, Pakistani, Black Caribbean and African, in order to draw out contrasts and comparisons and illuminate the unique nature of ethnic minorities' experiences of frailty in old age, the vulnerabilities as well as strengths and how to better support these. In the first stage of our qualitative research we will conduct a photovoice study with the older people. This will involve giving them cameras, asking them to take photographs of their experience of frailty and talking about what the photographs show and mean. We will then interview some of these participants over a two year period to account for any changes and to tease out the factors that may underpin these, including risks uniquely associated with old age but also reflecting back over a lifetime of experience. We will also interview healthcare professionals to explore their understanding of frailty. To raise awareness of the things that are important to the experience of frailty, and the BAME experience in particular, we will use our research findings to generate the following interventions: 1) a frailty index to understand the causes of frailty at a population level; 2) an educational toolkit to be used in clinical education; 3) a public exhibition of the photographs taken; and 4) a person-centred 'cultural competence' tool for understanding frailty at patient level. We will share our findings with those involved in the care and support of older people and older people themselves, participants and others, including by use of a short animation.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE