School of Psychology, University of Southampton, Highfield, Southampton, UK.
Br J Health Psychol. 2011 May;16(Pt 2):430-44. doi: 10.1348/135910710X521492. Epub 2011 Mar 10.
The aim of this study was to explore how adolescents with a parent with multiple sclerosis (MS) adjust to their parents' illness.
We used an inductive qualitative approach with open ended questions as this was appropriate to facilitate the development of a broad and child-centred understanding of how adolescents adjust and which resources they use to cope with the challenges that are associated with parental MS.
Fifteen semi-structured face-to-face interviews were conducted. Interviews were audiotaped, transcribed, and analysed using inductive thematic analysis.
Adolescents described both positive and negative experiences related to having a parent with MS. Benefits to having a parent with MS included reports of feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. The support from the well parent, siblings, and friends were found to facilitate adolescents' adjustment. Adolescents assuming a parenting role and illness characteristics, such as illness deterioration, relapses and fatigue, challenged adolescents' adjustment to having a parent with MS.
Some adolescents described adjusting well to having a parent with MS, while others appeared to have more difficulty. Whilst the severity of the parent's deterioration and symptoms appeared to play a role in adjustment, other potentially modifiable factors such as the lack of well parent's support, adolescents' increased parenting responsibilities, and family tension also posed barriers to adolescents' adjustment. Support interventions may be helpful for vulnerable adolescents, which consider both family and individual factors.
本研究旨在探讨多发性硬化症（MS）患儿的父母如何适应他们的疾病。
我们采用了开放式问题的归纳定性方法，因为这适合于促进对青少年如何适应以及他们使用哪些资源来应对与父母 MS 相关的挑战的广泛和以儿童为中心的理解。
进行了 15 次半结构化面对面访谈。访谈进行了录音、转录，并使用归纳主题分析进行了分析。
青少年描述了与父母患有 MS 相关的积极和消极体验。患有 MS 父母的好处包括对他人更有同情心和更成熟的感觉。负面影响包括家庭紧张、与朋友相处的时间减少和对未来的担忧。发现来自健康父母、兄弟姐妹和朋友的支持有助于青少年的适应。青少年承担父母的角色和疾病特征，如病情恶化、复发和疲劳，对他们适应患有 MS 的父母构成挑战。
一些青少年描述适应良好，而另一些则似乎更加困难。尽管父母病情恶化和症状的严重程度似乎对适应起到了作用，但其他潜在的可改变因素，如缺乏健康父母的支持、青少年增加的育儿责任和家庭紧张，也对青少年的适应造成了障碍。支持干预措施可能对脆弱的青少年有帮助，这些措施同时考虑到家庭和个人因素。
