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BACKGROUND AND OBJECTIVES Caregivers of children with medical complexity (CMC) face many stressors related to their child’s medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. METHODS We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. RESULTS Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child’s illness and medical needs. In addition, parents indicated their child’s illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver’s housing preferences and possibilities. CONCLUSIONS Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child’s health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC.METHODS:We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis.RESULTS:Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition.CONCLUSIONS:Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.