Family Functioning in a Space Without Barriers: An Observation Study of Caregiver Behavior Among Children with...

Parents of children with complex medical needs face a set of stressors unique in comparison to parents of children with routine care. Prior literature has shown that parents of children with complex medical needs experience significant stress and physiologic burnout in daily life. While completing a week of service at a vacation location for families with children with complex medical needs, a group of medical students from the University of South Dakota Sanford School of Medicine conducted a purely observational study. This study explored intrafamilial and interfamilial parental interactions, with a focus on observed mood, stress levels, engagement with children, and routine structure. All observations were recorded anonymously in real-time on digital forms, which were then organized into a de-identified data set. The results revealed a significant negative association between observed mood and stress level, as well as a significant positive association between level of routine structure and engagement with their child with complex medical needs. This observational study explores emotional states, engagement, and behaviors of parents with children with complex medical needs in a specially supportive environment. Although causality and generalizability are limited in this research, the data suggest that providing more accessible and supportive settings for families with children with complex medical needs could impact intrafamilial relationships.