“100 Things I Wish Someone Would Have Told Me”: Everyday Challenges Parents Face While Caring for Their Children With a Tracheostomy

Abstract

Equitable access to appropriate care, emergency department services, and in-home support aids are needed to minimize the occurrences of adverse events that have a significant impact on families. However, many families of children with medical complexity (CMC) lack consistent care due to issues of health inequity. We conducted 11 qualitative interviews with primary caregivers who were asked about their experiences of providing care to children who have a tracheostomy and are supported by multiple life-saving machines at home. Guided by ecological systems theory, we identified three themes that contextualize the lived experiences of the participants who expressed needs that arose from poor interactions within the mesosystem. Findings convey participant frustrations that result from insufficient support, ineffective training, and inadequate healthcare coverage. Although each theme is organized systematically to emphasize specific concerns within the mesosystem, together these themes emphasize the inextricable relationship between daily needs with systemic barriers to care. We provide a discussion of these needs with a broader context that also impacts the perceived quality of care among families managing the needs of their children who are supported by life-saving technology. By addressing existing challenges and identifying opportunities for improvement within the healthcare system, we seek to contribute to the collective effort of advocating for ethical systemic change on behalf of CMC and their families.