A user-experience study of an online parenting program for rural and Appalachian caregivers of young childhood cancer survivors (Preprint)

Abstract

BACKGROUND Young childhood cancer survivors (YCCS) diagnosed and treated before age 7 are at heightened risk of developmental difficulties. As a result, their caregivers may experience stress as they navigate various educational and hospital systems, and advocate for their child’s needs. To our knowledge, there are no tailored early intervention or support programs to address the unique and multifaceted needs of YCCS and their caregivers. Digital platforms can provide anticipatory guidance and developmental resources, which may be especially impactful for families at increased risk for health and educational disparities, particularly in underserved rural and Appalachian areas. OBJECTIVE Thus, this study describes the development and usability testing of an online responsive parenting program for caregivers of YCCS, called the Preparing for Life and Academics for Young cancer survivors (PLAY) program. METHODS Twelve caregivers of YCCS (9 biological parents, 2 grandfathers, 1 adoptive parent; 33% rural; 33% Appalachian; 83% White) participated in a virtual usability session utilizing a task-based think-aloud method. This session was followed by completion of the System Usability Scale (SUS), responses to reaction cards to describe their experiences with the platform and a semi-structured interview. Two trained coders used rapid analysis and consensus methods to identify themes. RESULTS Overall, caregivers found the platform easy to use (92% SUS>68; M = 82.2, SD= 14.45). Most caregivers provided positive feedback in response to reaction cards (e.g., useful, appealing, valuable) to describe the platform. Qualitative findings highlighted that most caregivers perceived the platform as easy to use, and several participants described it as a helpful educational tool. Participants noted potential platform improvements should include accessibility features (e.g., closed captioning for videos), content, and usability on mobile devices. CONCLUSIONS With further improvements, digital platforms such as PLAY may be a promising avenue to bridge access to care for high-need groups and ultimately, to improve child neurodevelopmental outcomes. CLINICALTRIAL N/A