How children and young people with chronic pain and their families experience and perceive pain services and treatments and living with pain: a meta-ethnography

Citation

France E, Caes L, Uny I, Forbat L, Silveira Bianchim M, Noyes J, Jordan A, Turley R & Thomson K (2023) How children and young people with chronic pain and their families experience and perceive pain services and treatments and living with pain: a meta-ethnography. Lothian Health and Care Professions Research Conference 2023, Edinburgh, Scotland, 07.11.2023.

Abstract
Background: Chronic pain in children and young people (CYP) is a global public health problem affecting around 20% to 35% of CYP. Aim: To investigate how children and young people (CYP) with chronic pain and their families perceive and experience pain-related treatments and services and living with pain. Methods: A meta-ethnography was conducted from 2020 to 2023 with involvement of CYP with chronic pain and their parents (n=22), funded by the National Institute for Health and Care research (grant NIHR128671) (France et al., 2022). The systematic review included comprehensive searches of 12 bibliographic databases in September 2022 to identify qualitative and mixed-methods studies focusing on CYP aged 3 months to 18 years with chronic pain and their families. The review is registered with PROSPERO (CRD42019161455) and Cochrane. Results: Forty-three studies representing the views of 633 participants - 325 CYP with chronic pain and 308 of their family members - were included. Moderate and severe children’s chronic pain had wide-ranging adverse impacts on the lives of CYP and all family members, often dominating family life, altering family dynamics and their wider social connections. Families worked hard to try to overcome these impacts. Parents and CYP with recent-onset chronic pain wanted objective, credible diagnoses and curative treatment. However, families found it difficult to access help from health services to achieve satisfactory pain management. Interactions with health professionals were frequently stressful; CYP’s experiences of living with pain were overlooked or their pain was disbelieved, and parents felt blamed for their child’s pain. Parents of younger children and of children with communication difficulties perceived that health professionals did not always recognise their expertise in assessing their child’s pain. Our novel theory of good chronic pain management and services describes a whole-system, biopsychosocial, family-centred pain management approach; it emphasises the impact of children and young people’s chronic pain on all aspects of family life and their social relationships and a core component is empathetic communication by health and social care professionals. Discussion: Findings highlight that children’s chronic pain management should be integrated with support in the community and reframed as biopsychosocial health and social care tailored for children, which considers the needs of the entire family and the impact on the family life. There is currently no clear clinical care pathway for children’s chronic pain management, few specialist pain services, and a lack of high-quality evidence to underpin clinical guidelines. To improve children’s chronic pain management we need: increased availability and accessibility of specialist multidisciplinary pain management for children with complex chronic pain problems; improved education in children’s chronic pain assessment and management for trainee and qualified healthcare professionals; clear clinical care pathways; and development and testing of a triage approach to make sure that CYP with chronic pain get the right care, at the right time, from the right service. Conclusions: Future high-quality research is urgently needed to investigate safe, effective treatments in order to advance children’s chronic pain management and to explore how to better support families’ psychosocial needs. Reference: France E, Noyes J, Forbat L, Uny DI, Jordan A, Caes L, Turley R. (2022) A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments (Protocol). Cochrane Database of Systematic Reviews, Issue 7. Art. No.: CD014873. DOI: 10.1002/14651858.CD014873.