Exploring Experiences of Parents of a Child with Medical Complexity: A Case Study Approach
Abstract
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.