Learning to Trust Yourself: Decision-Making Skills among Parents of Children with Medical Complexity

Abstract

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement. Objectives: To describe the skills that caregivers developed as they gained experience making medical decisions. Methods: Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semi-structured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child—one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process. Results: We conducted 15 interviews with 16 parents (14 [88%] women, 2 [13%] men) of a child with medical complexity (aged 1-17 years). Parents described (1) becoming more adept at managing decisional information, (2) recognizing the influence of the decision's context, (3) building stronger relationships with providers, and (4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers. Conclusion: Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.