Coping and Meaning-Making Strategies Described by Parents of Children with Medical Complexity

Abstract

Objective: Parents of children with medical complexity (CMC) experience stressors related to caregiving, navigating the healthcare system, and managing their own well-being. There is a dearth of research examining parental coping strategies used in response to these challenges. Informed by the revised Transactional Model of Coping, the current study aimed to characterize coping among a sample of parents of CMC. Methods: Twenty parental caregivers of CMC served by the Complex Care Program at a large midwestern pediatric hospital participated in one-hour semi-structured qualitative interviews. Results: Participants described a breadth of ways of coping with challenges in their lives, including problem-focused and emotion-focused coping strategies. They also described a range of meaning-making strategies, represented by themes celebration of child, maintaining a commitment to caregiving, striving to be a “good parent,” and recognizing gains from caregiving experiences. Conclusions: Parents of CMC described coping with their challenges in diverse ways, including using many meaning-making strategies. Future research should investigate coping strategies more systematically with representative samples to enable culturally informed intervention development to support parent and family well-being among those who care for CMC.

Implications for Impact Statement

This qualitative study identifies emotion-focused, problem-focused, and meaning-making strategies employed by parents of children with medical complexity. Findings inform both advocacy (i.e., policy change) and clinical care efforts to improve the well-being of families who care for children with medical complexity.

Keywords

children with medical complexity parent coping meaning-making

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