Balancing Care and Sacrifice: Lived Experiences and Support Needs of Primary Caregivers in Pediatric Chronic Pain Across Canada and Australia
Bibliographic record
Abstract
BACKGROUND: Chronic 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. METHODS: We 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. RESULTS: Two 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. CONCLUSIONS: Findings 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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.012 | 0.004 |
| Scholarly communication | 0.004 | 0.001 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".