什么,如何以及何时家庭就ALS进行沟通? 对父母和孩子的感知进行了定性探索
Marion Sommers-Spijkerman1,2, Anna Stukker1, Melinda S Kavanaugh3
1Department of Rehabilitation, Physical Therapy Science and Sports, Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands.
Amyotrophic lateral sclerosis & frontotemporal degeneration
|December 9, 2023
概括
一个父母被诊断患有肌缩侧面硬化症 (ALS) 的家庭面临沟通挑战. 试图就ALS进行公开对话,但恐惧和不确定性会阻碍有效的家庭沟通和适应.
科学领域:
- 神经学 神经学
- 家庭研究 家庭研究
- 沟通研究 沟通研究
背景情况:
- 父母诊断出肌缩侧面硬化症 (ALS) 显著影响孩子的适应能力.
- 家庭沟通模式对于应对与ALS相关的挑战至关重要.
研究的目的:
- 探索家长和孩子在家庭中对有关肌缩性侧面硬化症 (ALS) 沟通的看法.
- 确定与ALS相关的家庭沟通中的关键主题,包括主题,风格和时间.
主要方法:
- 对21名家长 (8名患有ALS) 和15名儿童 (13-23岁) 的采访数据进行了定性常规内容分析.
- 探索受ALS影响的家庭生活经验.
主要成果:
- 沟通主题包括疾病事实,预后,情绪,护理需求,设备和生命结束讨论.
- 虽然父母经常认为沟通是开放的,但父母和孩子有时会因为不确定性或害怕负担他人而避免讨论ALS.
- 沟通时间受到疾病进展和儿童询问的影响,父母和孩子之间有不同的感知.
结论:
- 了解与ALS相关的家庭沟通 (什么,如何,何时) 的细微差别至关重要.
- 家庭发起ALS讨论,但遇到障碍,可以阻碍有效的沟通和适应.
- 通过解决这些已识别的挑战,医疗保健专业人员可以促进改善沟通和适应.
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