Managing informal care with pre-existing health conditions
Research type
Research Study
Full title
How is informal care to a person with cancer managed, when the person providing support has a pre-existing health condition/s?
IRAS ID
339958
Contact name
Lynda Appleton
Contact email
Sponsor organisation
The Clatterbridge Cance
Duration of Study in the UK
1 years, 8 months, 2 days
Research summary
Informal caregivers provide unpaid, ongoing assistance with activities of daily living for individuals with chronic illness or disability (OECD 2017). There are 1 in 8 adults providing care and 1.4 million people providing over 50 hours of care per week (Age UK 2021). Carers may neglect their own health, not attending health appointments or screening, missing the early detection of health problems (Morrison 2019). There is limited research exploring carer’s health prior to their caring role, in contrast to studies measuring caregiver ‘burden’ during care-giving (Lindt et al. 2020). Stacey et al. (2018) and Vlachantoni et al. (2016) measured the prevalence of long-term conditions in carers, but did not include the duration, intensity or environment of care. This study will explore the experiences of informal carers who provide help to a person with cancer, and who have health conditions that pre-date their caring role. Each informal carer (n=20-25) will be interviewed at three time-points (baseline, 4 and 8 months) to understand how care is constructed and managed alongside health needs, the coping and self-care strategies used, and the resources and services accessed. We will interview primary care professionals and providers of carer services in the community (n=10-15) on the provision of support for informal carers. This longitudinal study will enable potential changes and transitions in the care role to be identified, including barriers and opportunities for sustaining health and well-being needs. 4-6 focus groups will be conducted with carers and professionals/service providers to discuss the implications of the study results, to identify interventions and to make recommendations to build on existing services and/or the need for new services. Data will be analysed using Interpretative Phenomenological Analysis (IPA) within and between different groups of informal carers according to socio-demographic characteristics, providing an understanding of potential health inequalities.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
24/PR/1213
Date of REC Opinion
1 Nov 2024
REC opinion
Further Information Favourable Opinion