Caregivers as researchers: an evaluation of early positive approaches to support (E-PAtS) in partnership with family caregiver co-researchers

Introduction: E-PAtS is a co-produced and co-facilitated group programme to support caregiver wellbeing and positive development for children with intellectual/developmental disabilities. E-PAtS has previously been evaluated in traditional ways. This study, explored the process and benefits of training three caregivers as co-researchers in the evaluation of E-PAtS.

Methods: Three caregivers were invited to serve as co researchers and provided with training/supervision. Co-researchers gathered baseline and follow-up data by supporting families who attended E-PAtS to complete questionnaires and conducted follow up interviews with a subset of families. All co-researchers were later interviewed to explore their own experiences of serving in this role.

Results: Findings from this study are three-fold and cover: quantitative analysis of pre and post-questionnaire data from 6 EPAtS groups; a thematic analysis of these groups and a thematic analysis of interviews with co-researchers themselves. Findings from both the qualitative and quantitative aspects of this work will be presented.

Implications: Partnering with caregivers in the evaluation of E-PAtS helped produce rich and meaningful data that had advantages beyond traditional methods. Co-researchers reported multiple positive experiences relating to their role. The co-researcher model therefore has

good potential to enhance both research and caregiver empowerment in the field.