Barriers and facilitators to participating in pediatric oncology rehabilitation: childhood cancer survivor and caregiver perspectives.

Abstract

To characterize childhood cancer survivor (CCS) and caregiver barriers and facilitators to participating in rehabilitation therapies, specifically physical therapy, occupational therapy and speech-language pathology, following a new pediatric cancer diagnosis. Multi-site qualitative study. Two US academic medical centers in the Midwest and Mountain West regions. Thirteen CCS diagnosed with cancer before age 19 with a rehabilitation referral and 33 caregivers of CCS meeting eligibility criteria. Not applicable. Not applicable. We identified five key themes: (1) consistency in care; (2) unique needs of CCS; (3) access to local rehabilitation services in home communities; (4) caregiver engagement; and (5) costs and insurance coverage. Receiving routine care from consistent providers helped CCS feel comfortable participating in and challenging themselves in therapy. Organizational and provider supports helped families navigate transitions between rehabilitation settings. Participants reported challenges related to finding care that met CCS' unique needs in their home communities and identifying providers who were knowledgeable of these needs. Patient safety and comfort were influenced by factors such as rehabilitation setting and sanitized to reflect the needs of immunocompromised CCS. Organizational and provider supports helped families with associated care cost barriers, including insurance coverage. CCS and caregiver experiences with rehabilitation services are influenced by supports and challenges at multiple levels, including individual, community, and organizational levels. These findings can inform current and future pediatric oncology rehabilitation program multi-level implementation and promote patient and family participation. Contextual factors that influence these efforts should be a focus of future research.