The Scottish Commission for Learning Disability is a small charity and the lead strategic partner to the Scottish Government in the delivery of ‘The keys to life’ learning disability strategy.
A key driver behind the strategy is improving the quality of life for people with learning disabilities in Scotland. Last year– armed with a small budget, and up against tight timescales, the Scottish Commission for Learning Disability began looking at designing a survey to measure quality of life for people with learning disabilities.
We knew we wanted the development of the survey to be led by people with learning disabilities; so we recruited six partner organisations, each of whom was led by or supported a network of people with learning disabilities.
We were also keen to avoid ‘reinventing the wheel’. We hoped we could simply adapt an already existing, validated measure of quality of life so that questions could be understood by people with learning disabilities; allowing us to benchmark against the general population.
However, our quest to find a validated measure of quality of life was drawing a blank.
With user testing and discussion, it became clear that using a validated measure encompassing the 10 broad domains of quality of life was going to make the survey too long: The World Health Organisation Quality of Life Disabilities Module was ruled out for this reason.
The easy read version of the Adult Social Care Outcomes Toolkit looked promising, but was too focussed on the outcomes of health and social care interventions.
So we changed tack.
We decided to include a measure of wellbeing, and design our own questions for the rest of the survey, drawing more heavily on our Partners’ Group to try and capture each domain within a single question.
The idea is to regress the wellbeing scores against the other questions during the analysis to see how each ‘domain’ contributes to this.
The Warwick-Edinburgh Mental Wellbeing Scales (WEMWBS) looks at mental wellbeing and has only been validated for use for those over 13. So we approached Dr Allison Boggis from the University of Suffolk, who kindly shared an adapted version she had used in some qualitative research. But even with adaptations our user testing found the key concepts underlying the questions were not easily understood.
We had similar difficulties with the ONS 4.
In the end we decided to adapt the ‘life satisfaction’ question from the ONS 4, using it as a single measure of personal wellbeing within the survey – though having simplified the language, we can’t benchmark against the general population, yet.
We approached an academic member of the Scottish Commission for Learning Disability’s Evidence Panel, who advised us the survey would benefit from focussing on just a few domains of quality of life to get more meaningful answers, particularly given the self-complete format.
So, rather than trying to include all 10 domains of quality of life, we used previous research, the new Keys to Life implementation framework and discussions with the Partners Group to focus on where people live, what they do with their time and their relationships.
There’s no doubt that where we are now is a compromise – we don’t have the resources or capacity to build and validate a model that measures the quality of life for people with learning disabilities in the short term.
However, we are hopeful that we can use the survey as a springboard to do so in the future.
Ruth Callander, Evidence & Research Officer at the Scottish Commission for Learning Disability (SCLD).