TY - JOUR
T1 - Impacts of paediatric chronic pain on parents : a qualitative study
AU - Ngo, Danny
AU - Aouad, Phillip
AU - Goodison-Farnsworth, Meg
AU - Gorrie, Andrew
AU - Kenmuir, Tracey
AU - Jaaniste, Tiina
PY - 2023/7
Y1 - 2023/7
N2 - 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.
AB - 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.
UR - https://hdl.handle.net/1959.7/uws:73969
U2 - 10.1111/cch.13079
DO - 10.1111/cch.13079
M3 - Article
SN - 0305-1862
VL - 49
SP - 645
EP - 656
JO - Child: Care , Health and Development
JF - Child: Care , Health and Development
IS - 4
ER -