Department of Pain, Sydney Children's Hospital, Randwick, New South Wales, Australia.
School of Clinical Medicine, University of New South Wales, Kensington, New South Wales, Australia.
Child Care Health Dev. 2023 Jul;49(4):645-656. doi: 10.1111/cch.13079. Epub 2022 Dec 5.
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.
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.
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.
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.
儿科慢性疼痛会对儿童的功能、健康相关生活质量和发育产生不利影响。然而，需要对照顾慢性疼痛儿童的父母的全面影响进行评估。本定性研究旨在调查照顾慢性疼痛儿童对父母可能产生的心理社会、功能和工作影响，包括该经历的任何积极影响。
10 名父母（8 名母亲和 2 名父亲），其孩子在悉尼儿童医院跨学科慢性和复杂疼痛诊所就诊，参与了半结构化访谈，探讨了照顾慢性疼痛儿童对父母的影响。访谈进行了录音、转录、编码（具有良好的编码一致性），并使用主题分析进行了分析。
照顾慢性疼痛儿童的父母体验可概括为四个主要主题：（1）“疼痛的持续和全方面性质”-父母描述了慢性疼痛的不可预测但持续的性质，对他们生活的各个领域产生了广泛的影响；（2）“应对不确定性”-他们的经历通常以不确定感、压力、绝望和恐惧为特征；（3）“支持和自我保健的重要性”-强大的支持网络和优先考虑自我保健对于缓解儿科慢性疼痛的负面影响至关重要；（4）“对生活和人际关系的重新焕发和乐观的看法”-一些父母确定了独特的积极影响，例如更牢固的关系、个人成长和对生活的新看法。
本研究提供了关于照顾慢性疼痛儿童的各种影响的丰富数据，强调需要制定全面、以家庭为中心的干预措施，既要解决儿童的功能问题，也要解决父母的功能问题。
