Title: Tired of spinning plates: an exploration of the mental health experiences of adults and/or older carers of adults with learning disabilities.
Funder: Department of Health and Social Care

Abstract: Research Questions We will address the following specific research questions: 1. How do carers of adults with learning disabilities conceptualise and make sense of their own mental health across the life course? 2. What services, support and interventions do carers access (including: social prescribing; carers’ passports; medication; talking therapies; peer support; complementary and alternative therapies) and how effective do they consider them to be? 3. What has been the impact of mental health issues on carers’ family lives, ability to care, employment, friendship and social life? 4. What are the impacts of COVID-19 so far on carers’ mental health, and how do carers perceive the medium and longer-term impacts and necessary support and interventions? 5. What do practitioners, providers and self-advocacy organisations need to know and do to support carers? Background Carers talk about the satisfaction and joy they take in their caring relationships, but they also experience many practical difficulties which can affect their mental health (DoHSC, 2018). Research shows a link between being a carer and poor mental health (DoHSC, 2018). Carers of adults with learning disabilities make up a quarter of the 9 million carers in the UK (DoHSC, 2018) but we know little about their mental health, their access to services and support and what they think good support looks like at different times in their lives. The research aims to (RAs): 1. Address the gap in knowledge about how carers of adults with learning disabilities conceptualise and experience mental health across the life course; 2. Address the gap in knowledge about the perceived quality, accessibility and effectiveness of support for carers’ mental health; 3. Explore the provision and uptake of support services, including barriers to accessing carers’ support services, particularly from marginalised communities and groups; 4. Explore carers’ perspectives on the effectiveness of interventions for carers (including: respite; medication; social prescribing; passport schemes; employment support; complementary/alternative therapies); 5. Explore the long-term impacts of the COVID-19 pandemic on carers’ mental health; 6. Co-produce the project, generate new knowledge and share impactful solutions working with groups of carers as co-researchers, research participants and project advisors. Methods The project adopts a mixed method approach: Convening a “Tea, Cake and Spinning Plates” Group which will act as the study PPI group and co researcher group; Conducting a rapid literature review on the mental health of carers of adults with learning disabilities; Co-design and delivery of a survey to explore carers experiences of mental health and support; Interviews and online storytelling workshops with carers to create new narratives of carer mental health; Findings synthesis to generate learning and teaching resources for stakeholders. Dissemination activities, including sharing films, outputs and events, to maximise impact Timescales for delivery The project will run for 24 months with a start date of 1st May, 2022. Anticipated impact and dissemination Through a strategic approach to public engagement and dissemination, the project has the potential to raise awareness of the mental health of carers of adults with learning disabilities among carers, allied health and social care practitioners and wider public.

Lay abstract: Carers talk about the satisfaction and joy they take in their caring relationships, but they also experience many practical difficulties which can affect their mental health (DoHSC, 2018). Research shows a link between being a carer and poor mental health (DoHSC, 2018). For example, mothers, fathers and siblings of disabled children all experience poor mental health (Rydzewska et al., 2021; Dunn et al, 2019; Caliendo et al., 2020) as do carers of older people and carers of people with dementia (NHS, 2017) (Carers UK, 2019). Pre-pandemic, carers of adults with learning disabilities made up a quarter of the 9 million carers in the UK (DoHSC, 2018) but we know little about their mental health, their access to services and support, and what they think good support looks like at different times in their lives. In addition, there appears to be no published research about the use of anti-depressant and anti-anxiety medication by family carers. NICE guidance on supporting adult carers (2020) briefly considers the mental health of adult carers of people with learning disabilities, but none of its research recommendations focus on the mental health of this group of carers. The aim of this project is to understand better the mental health of carers of adults with learning disabilities and the support they need. We will use the findings of the project to develop teaching and learning resources for health and care practitioners (GPs, allied health professionals, social workers, support providers, and voluntary organisations, including carer-led organisations and self-advocacy groups of people with learning disabilities) to better understand and support carers’ mental health. We will find out about: • the mental health issues of carers of adults with learning disabilities; • their experiences of support and services, how good they believe they are and how easy they find them to access; • what carers think about how support could be improved. We will do this by working closely with carers at every stage of the project. We will: • meet regularly with carers of adults with learning disabilities for ‘tea, cake and chat’ to explore their experiences over time and to reflect on research findings; • design a survey, with carers, to learn more about their mental health issues and the things that affect their mental health and their experiences of services; • work with carers to tell their stories and to make and share creative digital stories (short films) about their mental health experiences; • use what we find out to develop “Spinning Plates” teaching and learning tools for carers and for health and social care practitioners, and others, to better support the mental health of carers. The project will last for two years. We have spoken to carers of adults with learning disabilities and their organisations, as well as self advocacy groups for people with learning disabilities, to help us to plan this research. Carers will be involved at each stage of the research as: • members of the project's Study Steering Committee; • ‘Tea, cake and chat - Spinning Plates’ meetings; • survey designers; • interviewees and digital story makers; • co-authors of teaching and learning tools and other project outputs.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH