Utilization and Impacts of Pediatric Caregiver Programming on Therapeutic Engagement and Wellbeing: A Pilot Program

Purpose: The proposed doctoral capstone aims to measure the utilization and impacts of pediatric caregiver programming on therapeutic engagement and wellbeing. A scoping literature review and needs assessment of pediatric caregivers of children receiving OT services found that limited access to quality, caregiver-specific resources and programming impact the wellbeing of caregivers, their ability to care for their child, and their confidence and ability to engage in the therapeutic process. The literature points to a want and need for caregiver-specific programming and the use of a family-centered care approach to improve caregiver and child outcomes. Design: This study will utilize a one-group pretest-posttest and concurrent triangulation design to collect data on the impact of caregiver-specific programming on their confidence, stress and self-care, family cohesion, and health literacy. Participants will include primary caregivers of children receiving OT services at Children’s Therapy Center (CTC) at the time of recruitment and English speakers. Exclusion criteria are caregivers of children not receiving OT services at CTC at the time of study recruitment and caregivers under the age of 18 years. Participants will be recruited through purposive and convenience sampling. Participants will attend 8, 1-hour sessions over the span of 8 weeks; the program will be offered in a hybrid format. Methods: A non-standardized assessment tool was developed to measure caregiver confidence, stress and self-care, family cohesion, and pediatric terminology understanding; this tool will be administered pre- and post-intervention. Digital exit tickets will be administered following each session for program quality assurance and improvement. Following the 8 weeks of intervention, participants will have the opportunity to participate in a post-test focus group that utilizes a semi-structured interview design. Data will be collected and analyzed utilizing the university’s subscription to Microsoft OneDrive cloud, Zoom, Atlas.ti, and Qualtrics. Descriptive statistical analysis will be utilized for collected quantitative data and inductive thematic analysis will be utilized for qualitative data. Results/Limitations: Nine participants completed eight weeks of programming and were included in the study. Participants reported improved understanding of the occupational therapy scope and how their child's needs were being supported by services. Intentional, structured education positively impacted family interactions and dynamics and improved caregiver understanding and utilization of therapeutic terminology to communicate with child's care team, explain child's needs toothers, and advocate for their child. Participants additionally reported applying individual and intentional strategies outside of the clinic. This study was limited by its lack of control group and randomization, as well as the utilization of non-standardized assessment tools and small sample size. Impact Statement: Caregivers are an integral component and collaborated in pediatric service delivery, however, are often underrepresented in occupational science and not included in plan of care development. Additionally, limited reimbursement options exist for pediatric caregiver education, further inhibiting clinicians’ ability and desire to provide caregiver-specific programming. The results of this study may support advocacy initiatives for expanded reimbursement for caregiver education. It is the intent of this project to contribute to the existing literature and generalizable knowledge on family-centered care and the impacts of caregiver-specific programming on therapeutic engagement and wellbeing.