Optimising Participation in Physical Activity Research for Adults with Intellectual Disabilities

Authors: Yetunde M. Dairo, Johnny Collett, Helen Dawes

Abstract:

Background and Aim: Engagement with physical activity (PA) research is poor among adults with intellectual disabilities (ID), particularly in those from residential homes. This study explored why, by asking managers of residential homes, adults with ID and their carers. Methods: Participants: A convenient sample of 23 individuals from two UK local authorities, including a group of ID residential home managers, adults with ID and their support staff. Procedures: A) Residential home managers (n=6) were asked questions about their willingness to allow their residents to participate in PA research; B) eleven adults with ID and their support workers (n=6) were asked questions about their willingness to accept 7-day accelerometer monitoring and/or the International Physical Activity Questionnaire-short version (IPAQ-s) as PA measures. The IPAQ-s was administered by the researcher and they were each provided with samples of accelerometers to try on. Results: A) Five out of six managers said that the burden of wearing the accelerometer for seven days would be too high for the people they support, the majority of whom might be unable to express their wishes. They also said they would be unwilling to act as proxy respondents for the same reason. Additionally, they cited time pressure, understaffing, and reluctance to spend time on the research paperwork as further reasons for non-participation. B) All 11 individuals with ID completed the IPAQ-s while only three accepted the accelerometer, one of whom was deemed inappropriate to wear it. Reasons for rejecting accelerometers included statements from participants of: ‘too expensive’, ‘too heavy’, ‘uncomfortable’, and two people said they would not want to wear it for more than one day. All adults with ID (11) and their support workers (6) provided information about their physical activity levels through the IPAQ-s. Conclusions: Care home managers are a barrier to research participation. However, adults with ID would be happy for the IPAQ-s as a PA measure, but less so for the 7-day accelerometer monitoring. In order to improve participation in this population, the choice of PA measure is considered important. Moreover, there is a need for studies exploring how best to engage ID residential home managers in PA research.

Keywords: intellectual disability, physical activity measurement, research engagement, research participation