Impacts of paediatric chronic pain on parents : a qualitative study

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.