The importance of feasible outcome evaluations: Developing stakeholder‐informed outcomes in a randomized controlled trial for children’s respite workers receiving pain training

• Published in: Paediatric and neonatal pain Vol. 3; no. 1; pp. 12 - 19
• Main Authors: Genik, Lara M., McMurtry, C. Meghan, Barata, Paula C., Barney, Chantel C., Lewis, Stephen P.
• Format: Journal Article
• Language: English
• Published: United States John Wiley & Sons, Inc 01.03.2021; John Wiley and Sons Inc; Wiley
• Subjects: Caregivers; children; Clinical trials; disabilities; Disability; Interviews; Knowledge; knowledge translation; Original Research; Pain; pain education; Pilot projects; Qualitative research; Questionnaires; Research ethics; Researchers; Stakeholders; Workers; disabilities; children; pain education; knowledge translation
• ISSN: 2637-3807; 2637-3807
• DOI: 10.1002/pne2.12026

Objective Pain is common for children with intellectual and developmental disabilities. It is critical that caregivers have adequate pain assessment and management knowledge. The Let’s Talk About Pain program has shown promise to provide pain‐related knowledge and skills to respite workers; however, more systematic evaluation of the program is needed. This study aims to support Let’s Talk About Pain’s RCT development by using stakeholder input to help determine a feasible approach for collecting behaviorally based outcomes. A secondary aim is to discuss relevant considerations and implications for others in the disability field conducting similar work. Methods/Design Four employees in children’s respite organizations completed telephone interviews lasting approximately fifteen minutes and a questionnaire about feasible data collection approaches. Results The use of questionnaire and focus group methodology was determined to be the most feasible method to evaluate participants’ pain‐related approaches in practice. Conclusions Special consideration should be made when making methodological‐related choices during study development to help ensure study feasibility. The iterative approach described in this paper may also be helpful in clinical settings when designing program evaluations to enhance feasibility and suitability; it is particularly important for multifaceted organizations supporting individuals with complex needs including those with intellectual and developmental disabilities.