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Citation

France E, Noyes J, Jordan A, Uny I, Forbat L, Caes L, Turley R & Silveira Bianchim M (2022) How children and young people with chronic pain and their families live with pain and perceive pain treatments and services - a meta-ethnography. RCN International Nursing Research Conference 2022, Cardiff, Wales, 05.09.2022-06.09.2022.

Abstract
Background Chronic pain in children and young people (CYP) is a global public health problem. Aims To investigate how CYP with chronic pain and their families live with pain and perceive and experience pain-related treatments and services. Methods A meta-ethnography was conducted with patient and public involvement. Systematic review methods included comprehensive searches of 12 bibliographic databases from inception to September/October 2020 to identify qualitative and mixed-methods studies conducted with CYP with chronic pain aged 3 months to 18 years and their families. Results Forty-two publications representing 561 participants across 11 countries were included. Chronic pain and its management have wide-ranging negative impacts on CYP and their families, often dominating family life and altering family dynamics. Parents feel responsible for, and develop expertise in assessing, their child’s chronic pain. Parents and CYP with recent-onset chronic pain want objective, credible diagnoses and curative treatment. Over time, families’ move towards focusing more on better quality of life and pain management. Without a diagnosis, parents can feel blamed for causing their child’s pain. A diagnosis can legitimise children’s pain and facilitate access to treatment. Nonetheless, barriers to effective pain management may still exist: families lose trust in health services if they perceive suboptimal care and communication from healthcare professionals, and accessing and navigating services can be difficult. Discussion Our new theoretical insights about children’s chronic pain and its management highlight: the importance of healthcare professionals acknowledging the credibility of the child’s pain and the expertise of CYP and parents who live with pain, and adopting a systemic family approach to pain management. Trust and good communication between families and professionals is important for effective pain management. Conclusion Future high-quality research is urgently needed to investigate safe, effective, patient/family-orientated treatments to advance children’s chronic pain management and how to better support families’ psychosocial needs.