Jordan Abbie L, Eccleston Christopher, Osborn Mike
Pain Management Unit, University of Bath, Level 7, Wessex House, Bath BA2 7AY, UK.
Eur J Pain. 2007 Jan;11(1):49-56. doi: 10.1016/j.ejpain.2005.12.012. Epub 2006 Feb 3.
Previous quantitative research has shown that parents of adolescents with chronic pain report elevated levels of emotional distress in addition to limitations in social and family functioning.
This study aimed to further explore this parental impact by employing qualitative methodology to investigate parental experiences of caring for an adolescent with chronic pain.
A sample of 17 parents/carers of adolescents with chronic pain was selected from two UK tertiary clinic sites. Participants were 11 mothers, five fathers, and one grandmother (primary caregiver). Four focus groups with parents/carers were conducted to discuss the impact of caring for an adolescent with chronic pain on the parent/carer. Transcripts were analysed using interpretative phenomenological analysis (IPA).
Data analysis revealed two superordinate themes that captured the extensive, and largely negative, impact of being a parent of an adolescent with chronic pain. These themes were labelled 'struggle for control and coherence' and 'a very different life'. Both themes represent a fundamental parental struggle to adapt to a life very different than expected, a life fraught with uncertainty, fear, distress and loss.
Parents who are unable to achieve the relief of their adolescent's chronic pain and suffering report significant personal distress that is exemplified by the repetitive search for legitimacy of their child's pain in 'diagnosis'. In the absence of diagnosis parents reported an unwelcome suspension in an unusual pattern of parenting, resembling the infant phase of parenting.
先前的定量研究表明，患有慢性疼痛的青少年的父母除了在社交和家庭功能方面存在限制外，还报告了更高水平的情绪困扰。
本研究旨在通过采用定性方法调查照顾患有慢性疼痛青少年的父母的经历，进一步探讨这种父母影响。
从英国两个三级诊所站点选取了17名患有慢性疼痛青少年的父母/照顾者作为样本。参与者包括11名母亲、5名父亲和1名祖母（主要照顾者）。与父母/照顾者进行了4个焦点小组讨论，以探讨照顾患有慢性疼痛青少年对父母/照顾者的影响。使用解释现象学分析（IPA）对转录本进行分析。
数据分析揭示了两个上位主题，这些主题体现了作为患有慢性疼痛青少年的父母所受到的广泛且主要为负面的影响。这些主题被标记为“为控制和连贯性而挣扎”以及“截然不同的生活”。这两个主题都代表了父母在根本上努力适应与预期截然不同的生活，这种生活充满了不确定性、恐惧、痛苦和失落。
那些无法减轻青少年慢性疼痛和痛苦的父母报告了巨大的个人痛苦，这体现在他们反复在“诊断”中寻求孩子疼痛的合理性。在没有诊断的情况下，父母报告称育儿方式出现了一种不受欢迎的停滞，类似于育儿的婴儿阶段。
