Participatory Peer Research in the Treatment of Young Adults With Mild Intellectual Disabilities and Severe Behavioral Problems

Abstract

This study provides an illustration of a research design complementary to randomized controlled trial to evaluate program effects, namely, participatory peer research (PPR). The PPR described in current study was carried out in a small sample (N = 10) of young adults with mild intellectual disabilities (MID) and severe behavioral problems. During the PPR intervention, control and feedback to individuals is restored by training them to become participant‐researchers, who collaborate in a small group of people with MID. Their research is aimed at the problems the young adults perceive and/or specific subjects of their interest. The study was designed as a multiple case study with an experimental and comparison group. Questionnaires and a semistructured interview were administered before and after the PPR project. Results of Reliable Change Index (RCI) analyses showed a decrease in self‐serving cognitive distortions in the PPR group, but not in the comparison group. These results indicate that PPR helps to compensate for a lack of adequate feedback and control, and in turn may decrease distorted thinking and thereby possibly later challenging behavior.

Introduction to the Special Issue. Randomized Controlled Trials (RCTs) in Clinical and Community Settings: Challenges, Alternatives, and Supplementary Designs

“…In some cases, there may be legal or ethical concerns about randomly allocating participants to different groups or withholding an intervention. For example, in juvenile justice or residential care settings randomization may come with legal and ethical challenges (Butts & Roman, ; Tavecchio et al., 2019, this issue). There may also be cases in which an RCT alone may not be suitable to answer the question at hand.…”

“…Second, Tavecchio and colleagues (2019, this issue) describe an approach that engaged intended users of the research outcomes as participants in the research process, namely participatory peer research (PPR). They illustrate this approach in a small sample ( N = 10) of young adults with mild intellectual disabilities (MID) and severe behavioral problems.…”

“…In some populations, the RCT design might be difficult, untenable, or sometimes even inappropriate (Miller & Brody, ). Particularly in cases of hard‐to‐reach and vulnerable populations, such as refugee and marginalized communities (see Ponguta et al., 2019, this issue) or children and adolescents in residential care institutions (see Tavecchio et al., 2019, this issue), researchers are confronted with many practical, methodological, political, legal, and/or ethical challenges. The goal of this issue is to catalog such challenges of conducting an RCT and explore alternatives and supplementary study designs that address these challenges.…”

Peer Support Provided by People with Intellectual and Developmental Disabilities: A Rapid Scoping Review to Develop a Toolkit for Inclusive Research

“…Yet, there is still a pressing need for quality approaches to training and building the capacity of research collaborators with intellectual and developmental disabilities that are aligned with the key tenets of inclusive research (Embregts et al 2018;Garratt et al 2022;Milner and Frawley 2019). Peer support can be a useful approach for facilitating engagement for people with intellectual and developmental disabilities in the research process in a way that is performed 'with' and 'by' people with disabilities (Kramer et al 2013(Kramer et al , 2023(Kramer et al , 2018Milner and Frawley 2019;Strnadová et al 2014;Tavecchio et al 2019).…”

Developing a Patient and Public Involvement Training Course for People with Intellectual Disabilities: The Leicestershire Experience

“…However, in recent decades, there has been considerable interest and intent among researchers to involve PwID in research, advocating for their coparticipatory role, and to ensure outcomes are aligned with their priorities (Di Lorito et al, 2018;Tavecchio et al, 2019). The United Nations have asserted that patients have a democratic right to be involved in everything that affects their life, including scientific research (Nierse & Abma, 2011;United Nations, 2023).…”