努力限制影响:养育患有多发性硬化症的成年儿童 - - 一项理论研究
Camilla Holden1, Peter Hewitt2, Rachel Tams2
1From the Isis Education Centre, Warneford Hospital, Oxford Institute of Clinical Psychology Training, Oxford, UK (CH).
International journal of MS care
|November 16, 2023
概括
患有多发性硬化症 (MS) 的成年人的父母在平衡实际照顾和情感支持的同时,在自己的生活中管理竞争的需求. 他们的独特经验凸显了需要纳入MS家庭调整研究和干预的必要性.
科学领域:
- 神经学 神经学
- 心理学 心理学 心理学
- 社会科学 社会科学 社会科学
背景情况:
- 多发性硬化症 (MS) 是一种慢性,渐进的自身免疫性炎症性疾病,影响个人和家庭.
- 对于MS对受影响成年人的父母的具体影响的了解有限.
- 本研究探讨了成年儿童MS诊断的背景下父母的作用.
研究的目的:
- 发展对父母的角色的概念理解,当一个成年孩子患有MS时.
- 探索这种家长角色如何随着时间的推移而演变.
- 为了捕捉成年人与MS的父母的第一手帐户.
主要方法:
- 在英国招募了12名患有多发性硬化症的成年人的父母队列.
- 数据收集涉及有声记录的半结构面试.
- 一种社会构造主义基于理论的方法指导了分析.
主要成果:
- 父母积极提供实践照顾和情感支持,以减轻MS的影响.
- 父母们在竞争的要求中进行了导航:孩子的需求与个人生活,管理情绪,以及平衡帮助与独立.
- 开发了一个理论模型来说明这些父母的经历.
结论:
- 当他们的成年孩子患有MS时,父母会遇到独特的挑战.
- 家长应该被纳入研究和临床干预,以帮助家庭适应MS.
- 需要进一步的研究来证实概括性和探索社会人口统计学/文化影响.
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