Clinical Child Psychology and Psychiatry ( IF 1.8 ) Pub Date : 2021-07-30 , DOI: 10.1177/13591045211033188 Kimberley Friedner 1 , Wendy Solomons 1 , Halina Flannery 2 , Jenna Harrington 3
Background
Literature reviews revealed no existing research on family narratives of living with multigenerational persistent physical symptom (PPS) conditions. The current study examined the personal and family narratives of one such family, from a relational/systemic perspective.
Method
This research employed a qualitative research design, specifically using narrative methodologies to explore the experiences of a single family comprising two parents and their three children. All the children and their mother had a diagnosis of Ehlers–Danlos syndrome (EDS) but are specifically afflicted with PPS. The father is in good health. Using narrative inquiry, the family members were interviewed together and then individually. The interviews were audio-recorded, transcribed and analysed using narrative analysis in NVivo.
Findings
Overarching narratives were stories of loss and sacrifice and stories of family unity. An exploration of the family’s negotiation of roles and identities is presented in the context of stigmatised illness.
Discussion
Novel findings are presented in the context of the central role of the mother, the importance of family cohesion and the impact to family life resulting from living with stigmatised illness. Lastly, clinical implications and future research ideas are discussed.
中文翻译:
有持续身体症状的家庭叙述
背景
文献综述显示,目前没有关于多代持续性身体症状 (PPS) 状况的家庭叙述的研究。当前的研究从关系/系统的角度检查了这样一个家庭的个人和家庭叙事。
方法
本研究采用定性研究设计,特别是使用叙事方法来探索由两个父母和三个孩子组成的单一家庭的经历。所有的孩子和他们的母亲都被诊断为 Ehlers-Danlos 综合征 (EDS),但特别受到 PPS 的影响。父亲身体健康。使用叙述式询问,家庭成员一起接受采访,然后单独采访。在 NVivo 中使用叙事分析对访谈进行录音、转录和分析。
发现
总体叙述是关于失去和牺牲的故事以及家庭团结的故事。在被污名化的疾病背景下,探索了家庭在角色和身份上的协商。
讨论
新发现在母亲的核心作用、家庭凝聚力的重要性以及因患有污名化疾病而对家庭生活的影响的背景下呈现。最后,讨论了临床意义和未来的研究思路。