{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T04:30:30Z","timestamp":1777350630744,"version":"3.51.4"},"reference-count":291,"publisher":"National Institute for Health and Care Research","license":[{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002001","name":"Health and Social Care Delivery Research (HSDR) Programme","doi-asserted-by":"publisher","award":["NIHR128671"],"award-info":[{"award-number":["NIHR128671"]}],"id":[{"id":"10.13039\/501100002001","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journalslibrary.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":["Health Soc Care Deliv Res"],"abstract":"Background<\/jats:title>\nChildhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management.<\/jats:p>\n<\/jats:sec>\nObjectives<\/jats:title>\nTo conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as \u2018good\u2019 pain management.<\/jats:p>\n<\/jats:sec>\nDesign<\/jats:title>\nMeta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination.<\/jats:p>\nReview strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies\u2019 findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children\u2019s chronic non-cancer pain.<\/jats:p>\n<\/jats:sec>\nResults<\/jats:title>\nWe synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n<\/jats:italic>\u2005=\u200524) or moderate (n<\/jats:italic>\u2005=\u200519) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n<\/jats:italic>\u2005=\u200522), moderate (n<\/jats:italic>\u2005=\u200513) or very low confidence (n<\/jats:italic>\u2005=\u20051).<\/jats:p>\nModerate and severe chronic pain had profound adverse impacts on family members\u2019 well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children\u2019s education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services.<\/jats:p>\nCochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work.<\/jats:p>\n<\/jats:sec>\nLimitations<\/jats:title>\nThere were limited data on common pain conditions like migraine\/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments\/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals.<\/jats:p>\n<\/jats:sec>\nConclusions<\/jats:title>\nWe developed the family-centred theory of children\u2019s chronic pain management, integrating health and social care with community support.<\/jats:p>\n<\/jats:sec>\nFuture work<\/jats:title>\nFuture research should explore families\u2019 experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services.<\/jats:p>\n<\/jats:sec>\nStudy registration<\/jats:title>\nThis study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623).<\/jats:p>\n<\/jats:sec>\nFunding<\/jats:title>\nThis award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research<\/jats:italic>; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.<\/jats:p>\n<\/jats:sec>","DOI":"10.3310\/utpm7986","type":"journal-article","created":{"date-parts":[[2024,7,24]],"date-time":"2024-07-24T13:14:07Z","timestamp":1721826847000},"page":"1-218","update-policy":"https:\/\/doi.org\/10.3310\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a meta-ethnography"],"prefix":"10.3310","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9780-9006","authenticated-orcid":true,"given":"Mayara","family":"Silveira Bianchim","sequence":"first","affiliation":[{"name":"Nursing Midwifery and Allied Health Professions Research Unit, Faculty of Health Sciences and Sport, University of Stirling, Stirling, 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