Usability Testing of an Online Responsive Parenting Program for Rural and Appalachian Caregivers of Young Childhood Cancer Survivors: A Mixed Methods Study (Preprint)

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Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). 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: This mixed-methods study describes the 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 legal guardian; 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.

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