Measuring quality of life for people with learning disabilities

We’re putting a spotlight on disability and wellbeing as part of our measuring wellbeing blog series. Our board member Helen Baker – Chair of Shelter England – sets out why:

One in five people in the UK is disabled. We know that those self-reporting a disability are almost twice as likely to have low personal wellbeing. We also know that the experience of people with disabilities is less likely to be taken into consideration when developing general-use measurement tools or models of wellbeing. This means that their wellbeing is likely to be under-represented in findings.

The Centre is bringing together people with disabilities, family carers, practitioners, researchers and policy makers to share experience, knowledge and skills in this area.

What learning and good practice already exists and where are the most urgent gaps to be filled? What might be missing from the domains we commonly use to measure wellbeing? How can we adapt the language and tools we use to make it much more possible for people with cognitive disabilities, in particular, to understand what wellbeing means and to more directly communicate their own experience?

This series is not intended to solve all the issues but rather to start the conversation. It will make visible the experience of disabled people and the findings around wellbeing inequalities in disabled populations. We will share attempts being made, as with the guest blog below, to develop more credible and meaningful wellbeing domains, measures, and evaluations.

This week’s guest blog is by Ruth Callander,  Evidence & Research Officer at the Scottish Commission for Learning Disability (SCLD). Here, Ruth outlines the challenges and compromises to developing a model to measure the quality of life for people with learning disabilities.

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.

Challenges with measures for quality of life

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.

Challenges with using wellbeing measures

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.

The compromise – a bespoke solution

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.