Recent articles by Havercamp et al. (2020) and Shogren (2021) emphasized the importance of using self-report measures to gain insight in the thoughts and feelings of individuals with Intellectual Disabilities (ID). Proxies can provide useful observations of an individual’s functioning, but they can never directly observe nor fully understand another person’s subjective mental states such as emotional distress, worries or happiness (Lindsay & Skene, 2007).
Clinicians and researchers can use self-report questionnaires or interviews to ask persons about their mental states directly. However, many of these instruments prove to be difficult to understand for individuals with ID. To attune measures to the needs and capabilities of individuals with ID, researchers have proposed many different adaptations and supportive procedures.
With our review, we set out to gather all recommendations from 25 years of peer-reviewed research and appraise the quality of the evidence supporting these recommendations. Not many recommendations proved to be well-researched and the evidence for most was not conclusive. The findings from our review therefore offer preliminary guidance for clinicians and researches who wish to use measures that are ‘ID-inclusive’. Interesting avenues for further scientific exploration are mentioned in the Discussion section.
Kooijmans, R., Mercera, G., Langdon, P.E., & Moonen, X. (2022). The adaptation of self-report measures to the needs of people with intellectual disabilities: a systematic review. Clinical Psychology: Science and Practice. DOI: 10.1037/cps0000058
- Most recommendations have high degree of ‘practice credibility’, but are not well-researched. Should all recommendations in this review that are mainly described as ‘best practices’ be used to guide developers? Or should we recommend to use only the well-established suggestions?
- Not many concrete recommendations are given to assess an individual’s capacity to provide valid and reliable self-reported information. How should we decide if an individual is capable of self-report?
- Many references included in the review refer to studies undertaken more than 20 years ago. Should we assume that their results still hold in the current time frame? Or is an update necessary?
About the Authors
Roel Kooijmans MSc is a clinical psychologist involved in the care for youths with ID at Koraal Center of Expertise in The Netherlands. He is a PhD candidate at the University of Amsterdam, exploring the possibilities for developing ‘ID-inclusive’ self-report measures. He advises organizations on how to include the views of individuals with ID in research and clinical practice. Mr. Kooijmans can be contacted at email@example.com.
Gabriëlle Mercera is a scientist practitioner at Koraal Centre of Expertise and Maastricht University in The Netherlands. She is studying a wide range of topics in the field of youth care and the care for individuals with ID and is currently working on a PhD on sexual exploitation of young persons with ID.
Peter E Langdon DClinPsy, PhD is a Consultant Clinical and Forensic Psychologist and Professor at the Centre for Educational Development, Appraisal, and Research (CEDAR), University of Warwick. He is a Fellow of the British Psychological Society and works as an Approved Clinician within the National Health Service. Professor Langdon can be contacted at Peter.Langdon@warwick.ac.uk.
Xavier Moonen PhD is an orthopedagogue and psychologist. He is professor in the field of intellectual disabilities at the University of Amsterdam and at the University of Applied Sciences Zuyd Heerlen. Professor Moonen can be contacted at x.m.h.moonen@uva
Havercamp, S. M., Barnhill, L. J., Bonardi, A., Chapman, R. A., Cobranchi, C., Fletcher, R. J., Rabidoux, P., Seeley, J. R., Tassé, M. J., & (2021). Straight from the horse’s mouth: Increasing self-report in mental health assessment in individuals with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 1– 9. https://doi.org/10.1111/jar.12952
Lindsay, W. R., & Skene, D. D. (2007). The Beck depression inventory II and the Beck anxiety inventory in people with intellectual disabilities: Factor analyses and group data. Journal of Applied Research in Intellectual Disabilities, 20(5), 401–408. https://doi.org/10.1111/j.1468-3148.2007.00380.x
Shogren, K.A., Bonardi, A., Cobranchi, C., Krahn, G., Murray, A., Robinson, A., Havercamp, S.M. and (2021), State of the Field: The Need for Self-Report Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities. Journal of Policy and Practice in Intellectual Disabilities. https://doi.org/10.1111/jppi.12386
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