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UBC Theses and Dissertations

Health care interaction experiences of parents of children living with medical complexity during COVID-19 Smith, Kathryn Emma


Children with medical complexity (CMC) are a growing population who often access health care services more frequently than children without medical complexity and whose parents commonly assume the medical caregiver role in addition to their regular parenting responsibilities. CMC usually have high care needs, frequent use of health care services, functional limitations, and at least one complex, chronic condition. Despite the growing population, the frequency of accessing health care services, and the role of parents as medical caregivers, there is a lack of focused research regarding the experiences of parents following hospital discharge or medical interactions. This research study aimed to explore parents’ experiences and provide clinicians with recommendation from parents on how to improve in-patient hospital discharge or medical interaction processes. Using interpretive description methodology, this study was conducted using semi-structured interviews with five parents of CMC living within the interior of British Columbia about their experiences with in-patient hospital discharge or medical interactions of their CMC. The study identified five main themes related to parents’ experiences: parents’ emotional response to interactions; being acknowledged as an expert; providers building connections with children; accessibility to health care services; and COVID-19 pandemic-related challenges. In addition, six themes related to recommendations from parents for clinicians to improve processes were identified: the importance of forming connections with children; the importance of clear and effective communication; individualized approaches to care; creating and communicating a plan of care; including parents and children as part of the health care team; and the importance of clustering care. The results indicate parents’ experiences during and after health care interactions are complex events which can be influenced by the clinician providing care to the CMC and their family. This study can help providers learn how to better support parents during and after medical interactions.

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