Impacts of paediatric chronic pain on parents : a qualitative study

Danny Ngo, Phillip Aouad, Meg Goodison-Farnsworth, Andrew Gorrie, Tracey Kenmuir, Tiina Jaaniste

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

Background: Paediatric chronic pain adversely impacts the child's functioning, health-related quality of life and development. However, there is a need for a holistic assessment of parental impacts of caring for a child with chronic pain. This qualitative study aimed to investigate the possible psychosocial, functional and work impacts of caring for a child with chronic pain on parents, including any positive effects of the experience. Methods: Ten parents (eight mothers and two fathers), whose child attended the Sydney Children's Hospital Interdisciplinary Chronic and Complex Pain Clinic, participated in semi-structured interviews exploring the impact of caring for a child with chronic pain. Interviews were audio-recorded, transcribed, coded (with good inter-coder agreement) and analysed using thematic analysis. Results: The parental experience of caring for a child with chronic pain was encapsulated by four overarching themes: (1) ‘the constant and all-consuming nature of pain’ – parents described the unpredictable, yet constant nature of chronic pain, contributing to wide-reaching impacts in various areas of their life; (2) ‘dealing with uncertainty’ – their experience was commonly characterized by a sense of uncertainty, stress, hopelessness and fear; (3) ‘importance of support and self-care’ – strong support networks and prioritizing self-care were crucial in alleviating the negative effects of paediatric chronic pain; and (4) ‘a revitalized and optimistic view on life and relationships’ – some parents identified unique and positive effects, such as stronger relationships, personal growth and a reformed view on life. Conclusions: This study provided rich data on the various impacts of caring for a child with chronic pain, highlighting the need for the development of holistic, family-centred interventions addressing both child and parental functioning.
Original languageEnglish
Pages (from-to)645-656
Number of pages12
JournalChild: Care , Health and Development
Volume49
Issue number4
DOIs
Publication statusPublished - Jul 2023

Open Access - Access Right Statement

© 2022 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

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