Master of Science
Irwin, Jennifer D.
Parents of children with medical complexity (CMC) have the unique experience of also being their child’s health care provider (HCP). This cross-sectional, qualitative single-case study sought to 1) examine experiences of parental caregivers of CMC whilst navigating healthcare and social systems; and 2) examine influences of urban/rural settings on parental caregiver experiences. An online demographic survey and semi-structured telephone interviews were utilized with two families, one urban (n=1) and one rural (n=2). A thematic analysis was undertaken using both intersectionality and the Conceptual Model of Health-Related Quality of Life-(HRQoL) as frameworks to explore findings. This study revealed that challenges in communicating with HCPs and navigating the healthcare system, combined with the power and privilege experienced in interactions, affected the caregivers’ HRQoL, specifically in relation to individual and environmental characteristics. Focusing on alleviating systemic factors contributing to parental challenges will help to improve the HRQoL of both the parent and child.
Summary for Lay Audience
Parental caregivers of children with medical complexity (CMC) have the unique experience of being their child’s health care provider and primary advocate alongside their parental role. CMC are children who have one or more long-term conditions and require health services and health care that exceeds those used by children in the general population. Parents have expressed challenges when communicating with health care providers (HCPs) and issues with figuring out who to contact and for what purposes in the healthcare system due to its many departments. This case study aims to examine the experiences of parental caregivers as they navigate the healthcare and social systems and to examine whether living in urban/rural settings influences their experiences. An online survey was used to gather demographic information from participants and use it to form a more complete picture of their lives. Phone interviews were completed with participants to allow them to describe their caregiver experiences. All aspects of the parents’ lives, including their roles, were examined to ensure the power and privilege experienced by parents was considered. The health-related quality of life (HRQoL) of the parents was explored to identify how it is affected by their experiences as caregivers, which encompassed their individual and environmental characteristics. This study found that parents exerted power over their children in decision-making processes, given their expertise HCPs exerted power over parents, and the parents in the study expressed class privilege related to speaking English – the dominant language of the healthcare system – and having private insurance. Power within the parents’ interactions with others combined with experiencing communication difficulties with HCPs while they navigated the healthcare system affected their overall HRQoL as they consistently placed their child’s wellbeing above their own. Parents’ HRQoL was also influenced by their feelings of guilt, excitement, anxiety, and fear, their ability to adapt to their new role as parent and HCP, financial strain, and supportive social and physical environments. This study suggests that focusing on improving the systemic factors that contribute to the challenges parental caregivers face will help improve not only the parents HRQoL but also the HRQoL of their child.
Rocchese, Vanessa, "Exploring Experiences of Parents of a Child with Medical Complexity: A Case Study Approach" (2021). Electronic Thesis and Dissertation Repository. 8144.