Family challenges in personal transportation of children with medical complexity

Issue title: Spina Bifida

Guest editors: Timothy Brei, Heidi Castillo, Jonathan Castillo and Judy Thibadeau

Article type: Research Article

Authors: Batson, Lora^a | Donohue, Pamela K.^{a; b} | Boss, Renee D.^{b; c} | Seltzer, Rebecca R.^{a; b; c; *}

Affiliations: [a] Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA | [b] Johns Hopkins University School of Medicine, Baltimore, MD, USA | [c] Berman Institute of Bioethics, Baltimore, MD, USA

Correspondence: [*] Corresponding author: Rebecca R. Seltzer, M.D., M.H.S., Division of General Pediatrics, Department of Pediatrics, Johns Hopkins University School of Medicine, David M Rubenstein Child Health Building, 200N Wolfe Street, Room 2060, Baltimore, MD 21287, USA. Tel.: +1 4432878947; E-mail: rseltze2@jhmi.edu.

Abstract: PURPOSE:This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles. METHODS:Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts. RESULTS:Data from 29 participants who indicated use of personal vehicles to transport their CMC were included in the analysis. Transportation challenges were common, and analysis revealed the following themes: 1) challenges transitioning in/out of the vehicle: excess planning time, child factors (e.g., weight), equipment factors (e.g., wheelchair), physical and environmental factors, 2) safety and comfort: CMC positioning/restraints, driver distraction, 3) financial challenges: travel costs related to medical care, accessible modification costs, transportation equipment costs, insurance delays in equipment coverage, 4) adverse family repercussions: parental physical health, isolation, and 5) evolving and unpredictable transportation needs. CONCLUSION:Families with CMC experience multifactorial challenges that impact all phases of travel in personal vehicles and negatively impact child and family safety, access to community and medical care, family finances, and overall well-being. Health care providers can support families by identifying transportation challenges that contribute to health inequities, tailoring solutions to the family’s unique needs, and advocating at a policy level to promote change.

Keywords: Transportation, travel, children with medical complexity, family

DOI: 10.3233/PRM-220015

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 4, pp. 655-665, 2022