Outcome measure for psychological therapy for people with learning disabilities developed as part of inclusive research process

Background

Since the publication of Positive Practice Guidance on access to psychological therapies there have been a number of studies looking at the barriers to such access and some of the approaches to ensure reasonable adjustments are made.

The researchers in this study were concerned that the tools being used to evaluate the of impact of therapies for people with learning disabilities were too limited to be of use in clinical practice, often missing the impact that living with a learning disability can have on feelings and a sense of well-being.

Method

What they did was to work with a group of five people with learning disabilities as research partners to develop a questionnaire about feelings, to work up a joint evaluation tool that could be used to look at the impact of psychological therapies.

They worked together to adapt an existing questionnaire – the Clinical Outcomes in Routine Evaluation – Outcome Measure (CORE), a measure which covers well-being, problems/symptoms, life functioning and risk to self and others. Their aim was to develop a version appropriate for use by people with a learning disability.

Results

The authors describe the process of learning jointly about the research process to ensure an inclusive process. Each of the participants had different but valuable experiences to share. A key issue for investigation was how the experience of living with a learning disability might affect feelings so that this could be included in the questionnaire.

Inclusive working was important to make sure the questionnaire made sense and was easy to use for people with a learning disability.

The results of a series of psychometric tests showed that questionnaire had a good level of reliability and validity, suggesting it had the power to show how people’s feelings changed over time as a result of the impact of the psychological therapy.

Conclusion

The authors conclude that out that the use of an outcome measure sensitive to the needs of people with a learning disability is a “vital step towards providing evidence upon which best practice may be established.”