Research Aims

• Address the gap in knowledge about how carers of adults with learning disabilities conceptualise and experience mental health across the life course;

• Address the gap in knowledge about the perceived quality, accessibility and effectiveness of support for carers’ mental health;

• Explore the provision and uptake of support services, including barriers to accessing carers’ support services, including marginalised communities and groups;

• Explore carers’ perspectives on the effectiveness of interventions for carers (including: respite; medication; social prescribing; passport schemes; employment support; alternative and complementary therapies);

• Explore the long-term impacts of the COVID-19 pandemic on carers’ mental health;

• Co-produce the project, generate new knowledge and share impactful solutions working with groups of carers as co-researchers, research participants and project advisors.

Research Phases

Phase 1: “Tea, Cake and Spinning Plates” group

This group will be made up of 6 carers of adults with learning disabilities and 3 people with learning disabilities. The purpose of this group is to act as an innovative hybrid of traditional PPI for the study. Following a traditional model of PPI, the group will provide guidance, feedback and advice on each phase of the research. However, the group will act as co researchers and the regular group discussions about the research design, delivery and dissemination will form part of the project dataset.

Phase 2: Literature Review 

The review will focus on the mental health of carers of adults with learning disabilities in relation to: the impact on the day-to-day lives of carers; knowledge of and access to support, including medication and talking therapies as well as complementary and alternative therapies such as: looking after physical health (sleep; exercise; healthy eating; alcohol use; personal care); creative therapies (music, arts, dance and drama); yoga; meditation; hypnotherapy, herbal remedies and acupuncture.

Phase 3- Survey Co-Design Workshops 

Through two survey co-design workshops with family carers, we will develop an online structured survey to investigate priority issues for carers in terms of mental health. In the first co-design workshop family carers will prioritise the issues the survey should address. In the second workshop options for candidate questions addressing these issues will be discussed and a final set of questions decided upon.

Phase 4: Qualitative Interview Study (Online)

We will carry out 24 open-ended, semi-structured interviews. Interviews will be held in advance of 2 storytelling workshops to generate evidence of the experiences, perspectives, and knowledge of carers (parents and siblings) of adults with learning disabilities across the life course. The interview guide will be informed by findings from the literature review and survey and will be co-designed with family carers and people with learning disabilities in the Spinning Plates group

Phase 5: Online Digital Storytelling Workshops

We will hold two online digital storytelling workshops with 12 participants at each (n=24). Following consultation with carer organisations, there will be a separate workshop for parent carers and one for sibling carers to create safe places for participants to share their stories. Workshops will take place online.

Phase 6: Synthesising Findings; Creating resources 

We will draw together findings from the survey, interviews, digital stories and research journal. We will develop “Spinning Plates” learning and teaching resources for: GPs, allied health professionals, social workers, support providers, and voluntary organisations, including carer-led organisations and self-advocacy groups of people with learning disabilities. In addition, we will produce tailored learning and teaching materials for mental health teams and commissioners.

Phase 7: Dissemination 

We will hold an end of project event for carers and practitioners, including a screening of the digital stories, which will also be shared online and promoted via social media. In addition, we will hold two round table discussions. Invitations will be based on the people/organisations who are identified as important actors throughout the project, including GPs, social workers, commissioners, family carer organisations, self-advocacy groups, and allied health professionals. We will also disseminate findings via Learning Disability Partnership Boards and Integrated Care Boards. In addition to these resources, 3 peer reviewed journal articles will be published, based on the findings.

 The Partners