‘A privileged place to be’: improving quality of life for people with learning disabilities

At an online event in June, panellists from the learning disability charity Mencap explained how they are using an international tool called the Personal Outcome Scale (POS) both to understand more about the quality of life experienced by their client base and to effect changes that could improve that quality of life.

The panellists were:

Zac Taylor, director of quality and practice, Mencap

Owen Bowden, insight and analytics lead, Mencap

Ellen Kennedy, programme manager (quality of life), Mencap

Gillian Buchan, data analyst, Mencap

Denis Duagi, research and policy officer, Future Care Capital

Zac opened by explaining that measuring quality of life is important because it’s a way of “understanding the experiences that all people have, not just people with learning disabilities.” It looks beyond what people can be happy with to provide a broader and richer picture – and also helps to inform change: “If we know the quality of life a person has, we can think of ways of making it better.”

The personal outcome scale (POS) is a questionnaire developed jointly by academics at Ghent University and a service provider in the Netherlands, and tested on people with learning disabilities and those who support them. It asks 48 questions about quality of life in the past 12 months, as well as what might improve life in the next 12 months, over eight separate domains: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional wellbeing, physical wellbeing and material wellbeing.

Each question is answered on a three-point scale (eg “always”, “sometimes”, “rarely or never”). The answers in each domain are totted up to provide a final quality of life score. There are also open-ended questions.

The questionnaire is carried out by trained interviewees, and takes about an hour-and-a-half to complete. Questions can be either answered directly by the subject or with the help of someone close to them. It’s about “reinforcing the need to listen to people with learning disabilities and to find out what’s important to them” rather than making assumptions, said Zac.

Bollywood and Indian dishes

Ellen explained that each interviewer undergoes a two-day training programme that, as well as explaining how the tool works, gives trainees an opportunity to practise conducting the interviews under observation. Each course always includes a co-trainer with a learning disability who is able to “give some really insightful feedback about how it feels to be asked those questions.”

The original target for the project, which started before Covid hit, was to interview 1,000 people by March this year, but pandemic constraints meant the target was missed by 50%. The project was relaunched in March.

Mencap uses a system called What Matters Most – a way of providing support in a person-centred way. The interviews have offered insights that have enabled Mencap to make changes that put this approach into practice, updating participants’ support plans on the basis of the interview responses.

One participant, Priya, felt out of touch with her culture and wanted to engage with it more. The team supporting her found out information that led to her attending an Indian food event, going to Bollywood classes and cooking more Indian dishes. “It’s had a really positive impact on her quality of life, not only in terms of learning new skills but also the social inclusion that comes with that,” Ellen said.

Word clouds and verbatim quotes

Owen talked about the data analytics platform Mencap had created, with funding from the Health Foundation, to analyse the scores. It has enabled them to lay different datasets over the results – to find out, for example, whether a person’s geographical location affects their score, or whether an underlying health condition makes a difference to social inclusion. This has provided valuable information, but the next step will be to consider what longitudinal analysis to use when multiyear data is available – to investigate, for example, whether people have achieved things they wanted to achieve.

The free-text responses, collected from 369 conversations, have been particularly valuable. Gillian talked about the challenges of analysing qualitative data: cleaning up the text, and then using techniques such as word clouds, bigrams and trigrams to draw out themes. For example, a word cloud on the social inclusion answers showed “community” to be the most important word, while a trigram analysis on skills that people wanted to learn showed frequent mention of cooking skills and digital skills (eg “learn phone”, “learn computer”, “learn tablet”).

Searching keywords on the identified themes (for example, digital technology, and cooking and eating) returns verbatim quotes from the interviews that “provide a rich insight into the lives of people with a learning disability.” These can be used to inform Mencap campaigns as well as update support plans.

Asked about the challenges in the question-and-answer session, Ellen said that for a time-pushed support worker, finding two hours to carry out an interview could be difficult. Participants, however, were very happy to spend time talking about their quality of life with a sympathetic listener. Ellen’s own experience of carrying out the interviews is that they are the “best days of work, because you are just going out and spending time talking to people. And I’m always absolutely astounded by the amount of information people are confident to share with me. It always feels like a really privileged place to be.”