Let’s Talk About Pain: A Randomized Controlled Trial Testing the Effectiveness of a Pain Assessment and Management Training Program for Respite Workers Supporting Children with Developmental Disabilities

Abstract

Children with intellectual and developmental disabilities (I/DD) commonly experience pain which is often underassessed and mismanaged. Existing work focuses on improving pain-related skills of parents and health care professionals; it is also important to address the needs of others supporting children with I/DD such as respite workers. Let’s Talk About Pain is a training program designed to fill this gap. The goal of this dissertation was to build upon a prior pilot of the program to systematically examine the effectiveness of the Let’s Talk About Pain training. It includes a pre-study and a randomized controlled trial (RCT ClinicalTrials.gov Identifier: NCT03421795) presented in manuscript style. The first manuscript (Chapter Two) presents a multiple-case study which was undertaken to inform feasible follow-up methodology. The second (Chapter Three) presents the RCT protocol. Manuscripts three and four (Chapters Four and Five) present the findings of the RCT in which a sample of 158 respite workers from 14 children’s respite organizations completed either the Let’s Talk About Pain or control training and were evaluated immediately before, after and 4-6 weeks following training. Manuscript three reports on significant increases immediately following training completion and sustained increases at 4-6 week follow-up in participants’ (a) pain-related knowledge and (b) perceptions of the feasibility of and their own confidence and skill in pain assessment and management with children with I/DD. Although participants from both groups used similar pain assessment and management approaches in practice, manuscript four demonstrates that those receiving pain training also acknowledged additional benefits to pain-related education including heightened awareness of pain and new specific pain-related approaches. Participants positively endorsed the program. The fifth manuscript (Chapter Six) serving as a discussion/commentary is a call for action and highlights the opportunities and challenges associated with conducting community-based research related to pain in children with I/DD. This training may be an effective way to increase respite workers’ pain-related knowledge and perceptions. Future work should explore the application of the training across contexts and its impact on pain-related care for children with I/DD.