{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T11:59:44Z","timestamp":1791547184741,"version":"4.3.4"},"reference-count":71,"publisher":"MDPI AG","issue":"7","license":[{"start":{"date-parts":[[2025,7,10]],"date-time":"2025-07-10T00:00:00Z","timestamp":1752105600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Louise and Allen Edwards Foundation Pediatric Pain Fellowship Program"},{"name":"University of Toronto Centre for the Study of Pain and Pain Nurses Australia"},{"name":"Melbourne School of Health Sciences and the Chronic Pain Network Knowledge Mobilization and Implementation Science Program"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>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\u2019 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\u2019s needs over their own. Fathers\u2019 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\u2019s 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.<\/jats:p>","DOI":"10.3390\/children12070911","type":"journal-article","created":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T15:19:31Z","timestamp":1752247171000},"page":"911","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Balancing Care and Sacrifice: Lived Experiences and Support Needs of Primary Caregivers in Pediatric Chronic Pain Across Canada and Australia"],"prefix":"10.3390","volume":"12","author":[{"given":"Nicole","family":"Pope","sequence":"first","affiliation":[{"name":"Child Health Evaluative Services, Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada"},{"name":"Department of Nursing, Melbourne School of Health Sciences, Faculty of Medicine, Dentistry, and Health Sciences, The University of Melbourne, Melbourne, VIC 3052, Australia"},{"name":"Murdoch Children\u2019s Research Institute, Melbourne, VIC 3052, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Drumm","sequence":"additional","affiliation":[{"name":"Lawrence S. Bloomberg Faculty of Nursing and IHPME, University of Toronto, Toronto, ON M5S 1A1, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8223-8834","authenticated-orcid":false,"given":"Kathryn A.","family":"Birnie","sequence":"additional","affiliation":[{"name":"Department of Psychology and Neuroscience, Faculty of Science, Dalhousie University, Halifax, NS B3H 4R2, Canada"},{"name":"Department of Anesthesiology, Perioperative, and Pain Medicine, University of Calgary, Calgary, AB T2N 1N4, Canada"},{"name":"Department of Community Health Sciences, University of Calgary, Calgary, AB T2N 1N4, Canada"},{"name":"Department of Psychology, University of Calgary, Calgary, AB T2N 1N4, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melanie","family":"Noel","sequence":"additional","affiliation":[{"name":"Department of Psychology, University of Calgary, Calgary, AB T2N 1N4, Canada"},{"name":"Alberta Children\u2019s Hospital Research Institute, Hotchkiss Brain Institute, Calgary, AB T2N 4N1, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5316-0847","authenticated-orcid":false,"given":"Carolyn","family":"Berryman","sequence":"additional","affiliation":[{"name":"Pediatric Chronic Pain Service, Women\u2019s and Children\u2019s Hospital, Adelaide, SA 5006, Australia"},{"name":"Innovation, Implementation and Clinical Translation (IIMPACT) in Health, UniSA Allied Health & Human Performance, University of South Australia, City East Campus, Adelaide, SA 5001, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicki","family":"Ferencz","sequence":"additional","affiliation":[{"name":"Pediatric Chronic Pain Service, Women\u2019s and Children\u2019s Hospital, Adelaide, SA 5006, Australia"},{"name":"Faculty of Health and Medical Sciences, School of Psychology, University of Adelaide, Adelaide, SA 5005, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2941-4058","authenticated-orcid":false,"given":"Tieghan","family":"Killackey","sequence":"additional","affiliation":[{"name":"Lawrence S. Bloomberg Faculty of Nursing and IHPME, University of Toronto, Toronto, ON M5S 1A1, Canada"},{"name":"Peter Munk Cardiac Centre, University Health Network, Toronto, ON M5G 2C4, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5346-2581","authenticated-orcid":false,"given":"Megan","family":"Macneil","sequence":"additional","affiliation":[{"name":"Chronic Pain Network, McMaster University, Hamilton, ON L8S 4L8, Canada"},{"name":"School of Public Health, University of Alberta, Edmonton, AB T6G 2R3, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Darrel","family":"Zientek","sequence":"additional","affiliation":[{"name":"Independent Researcher, Ottawa, ON K2J 4W5, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victoria","family":"Surry","sequence":"additional","affiliation":[{"name":"Faculty of Human and Social Development, School of Public Administration, University of Victoria, Victoria, BC V8P 5C2, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9969-8052","authenticated-orcid":false,"given":"Jennifer N.","family":"Stinson","sequence":"additional","affiliation":[{"name":"Child Health Evaluative Services, Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada"},{"name":"Lawrence S. Bloomberg Faculty of Nursing and IHPME, University of Toronto, Toronto, ON M5S 1A1, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,7,10]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2215","DOI":"10.1097\/j.pain.0000000000003267","article-title":"The prevalence of chronic pain in children and adolescents: A systematic review update and meta-analysis","volume":"165","author":"Chambers","year":"2024","journal-title":"Pain"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"28","DOI":"10.1016\/j.jpain.2018.07.007","article-title":"Associations Between Adolescent Chronic Pain and Prescription Opioid Misuse in Adulthood","volume":"20","author":"Groenewald","year":"2019","journal-title":"J. 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