ArticleChildren (Basel, Switzerland)2025
Balancing Care and Sacrifice: Lived Experiences and Support Needs of Primary Caregivers in Pediatric Chronic Pain Across Canada and Australia.
Article in Children (Basel, Switzerland), 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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11 authors.
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Abstract
backgroundChronic pain affects one in five youth globally and is frequently accompanied by mental health challenges that extend into adulthood. Caregivers play a vital role in supporting youth with chronic pain, yet their own mental and physical health needs are often overlooked. While caregiver well-being is linked to child outcomes, few interventions directly address caregivers' health, especially among those facing systemic barriers. This study explored the lived experiences of caregivers to better understand their unmet needs and inform the co-design of a supportive digital health solution.
methodsWe conducted a qualitative exploratory study involving 32 caregivers of youth with chronic pain across Canada and Australia. Semi-structured interviews were co-facilitated by caregiver partners. Thematic analysis was applied to interview data.
resultsTwo overarching themes were identified: (1) bearing the weight and sacrifice of caregiving and (2) deep interrelatedness and blurred boundaries. Caregivers reported profound emotional, physical, and financial burdens; strained relationships; and social isolation. Many struggled with self-neglect, prioritizing their child's needs over their own. Fathers' evolving caregiving roles challenged traditional gender norms, though mothers continued to bear a disproportionate load. Despite challenges, caregivers demonstrated resilience and recognized their well-being as interconnected with their child's health.
conclusionsFindings underscore the need for systemic investment in caregiver well-being. Digital health solutions, including virtual peer networks, mental health resources, and tailored education, offer scalable, accessible pathways for support. These insights will inform the development of Power over Pain for Primary Caregivers, a digital solution and knowledge hub aimed at improving caregiver well-being and family outcomes, aligning with global efforts to enhance family-centred pediatric pain care.
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