title: Learning from the experiences of friends and relatives who care for people with life-limiting conditions to improve support services in Glasgow
Creators: name: Drummond, Maria
Publisher: name: University of Glasgow
Year: 2023

description: Introduction The number of people living longer with life-limiting conditions continues to increase. However, this increase has not been matched with adequate growth to health and social care services. Consequently, there is an increasing reliance on family members and friends who offer their time and resources to act as a caregiver. Caring for people who are living with life limiting conditions is predominantly expected of female family members. The caring role has become increasingly enduring and complex and puts those undertaking it at an increased risk of experiencing negative consequences related to their physical and mental health. This thesis describes a three-year project that explored the population of people from Glasgow who care for individuals with at least one life-limiting condition and their experiences with support services. Methods The aim of the project was to begin the process of developing an intervention for caregivers, that could be implemented in NHS Greater Glasgow and Clyde. This project was underpinned by the transformative intervention paradigm and influenced by feminist theory. Three steps of data collection and analysis were undertaken to achieve the aim. The steps included a modified systematic review of outcome measures used in trials of interventions for caregivers. This was followed by a secondary analysis of needs assessments carried out by the Glasgow City Carers Team. Finally, focus groups and interviews were carried out with caregivers from Glasgow to describe their experiences in using interventions and working with professional groups to help identify what was missing from what was available. Findings This project identified that there is considerable heterogeneity in caregiver intervention description and evaluation, which makes drawing conclusions about efficacy difficult. This variation is mirrored in the demographics of people who require needs assessments for their caring responsibilities in Glasgow. Speaking directly to caregivers through focus groups and an interview identified that professionals who interact with caregivers often add to, rather than reduce caregiver burden and stress. Participants described that current support is not flexible enough for them and does not offer continuity and accessibility. What is missing from what is available is a single point of contact that supports caregivers to manage their own health and wellbeing alongside the health of the person for whom they care. Consequently, an array of interventions and approaches to care and support for caregivers may be useful to caregivers. However, as many people who support people with life-limiting conditions do not recognise themselves as caregivers, access and visibility must be considered for any future interventions. Conclusion Future research should consider place-based interventions that address the unmet needs of caregivers. However, changes to existing services and professional conduct that offers caregivers continuity, opportunities to work in collaboration and respectfully communicate might reduce or remove the need for some caregiver interventions altogether.