Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity

Article type: Research Article

Authors: Foster, Carolyn C.^{a; b; *} | Fuentes, Molly M.^{b; c; d; e} | Wadlington, Lauren A.^e | Jacob-Files, Elizabeth^b | Desai, Arti D.^{a; b} | Simon, Tamara D.^{a; f} | Mangione-Smith, Rita^{a; b}

Affiliations: [a] Department of Pediatrics, University of Washington, Seattle, WA, USA | [b] Center for Child Health, Behavior and Development, Seattle Children’s Research Institute, Seattle, WA, USA | [c] Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA | [d] Harborview Injury Prevention and Research Center, Seattle, WA, USA | [e] Department of Social Work, Seattle Children’s Hospital, Seattle, WA, USA | [f] Center for Clinical and Translational Research, Seattle Children’s Research Institute, Seattle, WA, USA

Correspondence: [*] Corresponding author: Carolyn C. Foster, MD, MSHS, Dept. of Pediatrics, Division of Academic General Pediatrics and Primary Care, Northwestern University Feinberg School of Medicine, Mary Ann & J. Milburn Smith Child Health Research, Advocacy, and Outreach Center, Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 East Chicago Avenue, Box 162, Chicago, IL, 60611, USA. Tel.: +1 312 227 2665; Fax: +1 312 227 9801; E-mail: [email protected].

Abstract: PURPOSE:Children with medical complexity (CMC) often use rehabilitative services (“therapy”) to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. METHODS:Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. RESULTS:Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce’s ability to meet the need of CMC. CONCLUSION:Setting the ideal “dose” of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

Keywords: Children with medical complexity, rehabilitative and habilitative services, physical therapy, occupational therapy, speech therapy

DOI: 10.3233/PRM-190647

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 505-516, 2021