Self Help Covid Booklets
Public Engagement with Research Case studies
Introduction
WINNER - COVID Response - MVLS Engagement Awards 2021
The Covid-19 pandemic and the severe disruption caused by lockdown restrictions have had a major impact on the health and wellbeing of people with learning disabilities.
At a time when the emotional needs of people with learning disabilities were likely to be greater, their access to specialist mental health support was significantly reduced.
In response to this, the team of collaborators behind this project quickly re-purposed a set of guided self-help booklets that could be delivered by family members or support workers. The resources were aimed at supporting people who were struggling with their emotional wellbeing. They covered a variety of topics, including anxiety, depression, anger and staying active. More importantly, they offered people the chance to talk about their feelings with someone else.
The booklets were freely available online and as printed hard copies, as many people with learning disabilities do not have online access or may struggle with the technology. Over 12,000 copies of the booklets were requested by individuals and organisations across Scotland, and they have been translated into Welsh and Dutch, plus a Canadian version.
Project Partners
- University of Glasgow Institute of Health and Wellbeing
- Scottish Commission for Learning Disabilities
- University of Warwick
- Manchester Metropolitan University
- University of Lancaster.
What led you to include engagement as an element of your research?
When the pandemic started, most people’s access to mental health services stopped. This meant there was a need for help that could be provided on an outreach basis. We had a set of self-help booklets that had been carefully evaluated as part of a large-scale randomised control trial. We knew that the booklets were helpful and could be used by people with learning disabilities in their own homes, with the help of a family member or support worker. However, they needed to be re-purposed to make sure that they were relevant to the times and what people were experiencing. Family members and support workers also required some guidance about how to deliver the booklets.
Consequently, we immediately set about working on re-purposing the booklets and within weeks the first set were ready for use. The collaboration with the Scottish Commission for People with Learning Disabilities (SCLD) was essential to disseminating the resources and ensuring they reached the people who needed them most. SCLD also helped to facilitate an evaluation, allowing us to connect with people using the resources to gather feedback and find out what had been useful and where we could improve the resources to support people as the pandemic evolved. In the end, we produced three different versions of the booklets, to reflect the changing circumstances and concerns that arose during the period of restrictions.
Evaluation and Impact
We obtained funding from the ESRC Impact Acceleration Fund to evaluate the project. With Scottish Commission for People with Learning Disabilities (SCLD), we coordinated a series of online engagement sessions including one-to-one interviews with people with learning disabilities, and focus groups with family carers, support workers and professionals using the booklets.
We also carried out an online survey to help gather information on how the resources were being used. This feedback helped inform the development of an updated version of the booklets to ensure they were relevant to the challenges that Covid -19 posed for people with learning disabilities.
This evaluation process also helped us to identify the guidance that family members and support workers needed, who lacked experience in helping individuals with learning disabilities to use materials aiming to address emotional difficulties and promote their well-being.
Lessons learned
One surprise was that most people preferred having their own printed copies of the booklets rather than online versions. The booklets are designed to allow people to add their own lists and plans to booklets and write or draw on them. They liked being able to own and keep their own booklets and to be able to share and talk about them with their supporters.
The extraordinary demand for the booklets also came as a surprise. Perhaps it is an important reminder that people with learning disabilities have limited access to mental health resources that are appropriate to their needs.
Legacy
We have continued our partnership with all the collaborators involved, and we recently produced a third version of the adapted booklets, to address the difficulties some people are reported to be facing as Covid restrictions are being lifted.
In the longer term, those who took part in the evaluation advocated for the continuing availability of the booklets, beyond the pandemic. They believe there is an absence of high-quality resources that families or social care providers can use proactively, to support the wellbeing / mental health of people with learning disabilities, rather than seeking help from specialist services when someone reaches crisis point.