Aims: Neuromuscular diseases are rare conditions that present with progressive muscular weakness. As affected children transition into adulthood, they become more physically dependent on their families for support. There is little evidence on the family transition experience, which this study explored to identify experiences, challenges, and strategies of coping.
Design: Informed by family systems theory, a constructivist grounded theory study was conducted (2014-2017).
Methods: Data were collected by one-on-one interviews with a purposive sample of affected Swiss individuals and their families from 2015 to 2016. Data analysis used coding, memo writing, theoretical sampling, and constant comparison techniques.
Results: The analysis of 31 interviews with 10 affected individuals and 21 family members resulted in an interpretive theory constituted of four categories: (a) living with physical dependence, while striving for independence; (b) balancing proximity; (c) conforming and challenging social standards and expectations; and (d) grieving for loss, while joining forces for life.
Conclusion: Family functioning and well-being were threatened by recurring tension from stress, physical and emotional difficulties, strained relationships, and conflict. The families' strategies of coping and adaptation and their relationships and communication shaped their transition experience.
Impact: Families that experience threats to their well-being and functioning would benefit from: needs assessment and monitoring; planning of appropriate family interventions; support of family relationships and communication, effective coping, and mastery; and positive adaptation to change.
目的: 神经肌肉疾病较为罕见, 常伴随进行性肌无力。受影响儿童成年后, 其身体更依赖家人。截止目前, 针对家庭转型经验的研究近乎为零, 而本研究旨在探讨相关经验、挑战和应对策略。 设计: 以家庭系统理论为指导, 开展一项基于建构主义的理论研究 (2014-2017) 。 方法: 相关数据是通过一对一访谈收集, 且访谈对象为2015年至2016年间受影响的瑞士个人及其家属。在数据分析过程中编码, 编写备忘录, 理论抽样并应用持续比较技术。 结果: 现已对10名受影响个人和21名家庭成员进行31次访谈, 根据访谈分析, 得出四类解释性理论: (a) 身体依赖, 同时争取独立; (b) 接近平衡; (c) 遵守并挑战社会标准和期望; 以及 (d) 惋惜所失去的,但同时团结面对生活。 结论: 家庭功能和幸福感受到压力、身体和情绪困扰、紧张关系、冲突以及其他反复出现的不安因素的影响。家庭的应对策略、适应策略、关系和沟通共同塑造其过渡经历。 影响: 如果某个家庭的幸福和功能受到威胁, 该家庭将因以下几点获益: 评估和监测需求; 规划适当的家庭干预措施; 为家庭关系和沟通予以支持, 有效应对和掌握; 积极适应变化。.
Keywords: adolescent; family; genetics; grounded theory; neuromuscular diseases; nursing; transitional care.
© 2021 John Wiley & Sons Ltd.