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

患有复杂疾病儿童的父母所描述的应对和意义建构策略

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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.

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