TY - JOUR

T1 - Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a metaethnography

AU - Silveira Bianchim, Mayara

AU - Caes, Line

AU - Forbate, Liz

AU - Jordan, Abbie

AU - Noyes, Jane

AU - Thomson, Katie

AU - Turley, Ruth

AU - Uny, Isabelle

AU - France, Emma F.

PY - 2024/7

Y1 - 2024/7

N2 - AbstractBackgroundChildhood 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.ObjectivesTo 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 ‘good’ pain management.DesignMeta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination.Review 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’ 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’s chronic non-cancer pain.ResultsWe synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) 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 = 22), moderate (n = 13) or very low confidence (n = 1).Moderate and severe chronic pain had profound adverse impacts on family members’ well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children’s 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.Cochrane 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.LimitationsThere 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.ConclusionsWe developed the family-centred theory of children’s chronic pain management, integrating health and social care with community support.

AB - AbstractBackgroundChildhood 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.ObjectivesTo 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 ‘good’ pain management.DesignMeta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination.Review 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’ 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’s chronic non-cancer pain.ResultsWe synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) 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 = 22), moderate (n = 13) or very low confidence (n = 1).Moderate and severe chronic pain had profound adverse impacts on family members’ well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children’s 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.Cochrane 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.LimitationsThere 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.ConclusionsWe developed the family-centred theory of children’s chronic pain management, integrating health and social care with community support.

U2 - 10.3310/UTPM7986

DO - 10.3310/UTPM7986

M3 - Article

VL - 12

SP - 1

EP - 218

JO - Health and Social Care Delivery Research

JF - Health and Social Care Delivery Research

SN - 2755-0060

IS - 17

M1 - 3045616

ER -