This study aimed to describe the home-built environment of children with medical complexity (CMC) using novel photovoice methodology. Parents/guardians of CMC uploaded and discussed photographs of their home environment through semi-structured interviews. Conventional content analysis was applied to interview transcripts embedded with corresponding photographs. All participants modified their home environment to optimize the health, function, and well-being of the child and family; extent of modifications varied. Two main themes and subthemes characterized the home-built environment: (1) replicating hospital function and structure: ensuring accessibility, promoting safety, optimizing organization of supplies, and equipment and (2) maintaining a sense of home: self-expression, entertaining, family participation, and comfort. Elements of hospital structure and function and traditional home aesthetics and utility were equally important to families, the interplay between both facets informed modifications. By understanding the home-built environment, pediatric providers can more holistically support the health and well-being of CMC and their caregivers.
Keywords: accessibility; built environment; children with medical complexity; home modifications; housing.