ArticleFamilies, systems & health : the journal of collaborative family healthcare2025
Emotional impact, burnout, and isolation among primary family caregivers of children with medical complexity.
Article in Families, systems & health : the journal of collaborative family healthcare, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionChildren with medical complexity (CMC) often have substantial health care needs, are medically fragile, and experience functional limitations. Caregiving for these children can be extremely stressful. We sought to understand the emotional impacts of caregiving and burnout among caregivers of CMC to provide insight into areas where providers who work with children and their families can intervene.
methodTwenty caregivers of CMC participated in qualitative interviews. Qualitative data were analyzed using interpretive phenomenological analysis. Emergent themes were identified and categorized into superordinate themes.
resultsCaregivers of CMC described the "emotional impact of caregiving," including "hospitalizations are emotionally demanding," "child in pain is distressing," "fearing child would not come home from the hospital," "an awareness child may die," "anticipatory anxiety about future medical events," and "traumatic memories of past medical events." Caregivers conveyed themes of "caregiver burnout," indicating that "stress is constant," "a need for constant vigilance," "caregiving is emotionally and physically exhausting," "self-care is limited," "helplessness," and "difficulty self-regulating emotions." Caregivers revealed "caregiver isolation," including "others don't understand daily struggles," "child's medical situation is unique," "the limited community and emotional support," "social reactions to child's needs," and "comparing child to other children makes limitations stand out." DISCUSSION: Findings provide insight into the lived experience across primary caregivers of CMC. Identifying these experiences enables providers to effectively intervene, including prevention tactics, screening, and/or intervention. These healthcare providers play an important role in promoting optimal care and outcomes for these caregivers and, in turn, better outcomes for their children. (PsycInfo Database Record (c) 2026 APA, all rights reserved).
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