In order to live at home with their family and not in a hospital setting children with medical complexity (CMC) require a home that is safe, stable, accessible, and spacious enough to meet their intensive daily care needs. Yet, our prior research with CMC families in Maryland found that many experience high rates of housing instability and inadequacy. Half of families surveyed reported that the structure of their home was a barrier to meeting their child’s care needs and two-thirds reported a need for home modifications. For example, some children sleep in the dining room because there are not enough electric outlets in the bedroom for their medical technology (i.e. ventilator, feeding tube) or because they are too heavy to be carried up the stairs.
In this study, we will use Photovoice methodology, a participatory research strategy combining photography, critical dialogue, and experiential knowledge of participants, to document barriers and facilitators to caring for CMC in the home. We plan to use the knowledge gained, along with the photos taken, to 1) develop a web-based educational guide to support CMC families in optimizing their home to meet the needs of their child and family and 2) advocate for resources and policy change to address the unmet housing needs of CMC families. Our goal is to improve both the quality of life (QOL) and the quality of homes for children with the greatest medical needs.
Objectives
- Identify structural/ organizational barriers in the homes of CMC families that limit their child’s functional abilities, independence, and QOL.
- Document home modifications/ organizational strategies implemented by CMC families to support their child’s daily care needs, promote independence, and enhance QOL.
- Develop a parent-to-parent educational guide with housing tips/tricks and photographic examples of home modifications to improve daily living, and promote QOL and independence.
Methodology & Progress
Parents/guardians of children with medical complexity in Maryland will be recruited to participate. Using Photovoice methodology, they will be asked to take photographs for one week around their house to document 1) aspects of their home that are a barrier to meeting their child’s care needs and promoting their independence, and QOL and 2) aspects of their home that promote their child’s care needs, functional independence, and QOL. Participants will share their top 10 photographs with the study team, which will be discussed during a semi-structured interview. During the interview, participants will have the opportunity to discuss how the photographs capture what is/isn’t working well in their home environment and what they would want other families with CMC to learn from their photographs.
Recruitment is currently active.
Funding Source
Thomas Wilson Foundation
