Porteous Debra, Davies Barbara, English Christine, Atkinson Joanne
Department of Nursing, Midwifery and Health, Northumbria University, Newcastle Upon Tyne NE7 7XA, UK.
Children (Basel). 2021 Mar 11;8(3):212. doi: 10.3390/children8030212.
The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne's Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, ERC, and AMED. Four central themes emerged: Living with DMD; Knowing and telling; Transitioning; and Building resilience. The impact on parents caring for a child with DMD affected all aspects of their lives, changed over time, and had identifiable peak stress points. Unmet parental information and support needs left parents struggling in their role. Transition required changes to parenting behaviors and required adaptation and resilience. It is proposed that future investment should focus on anticipating family need, targeting intervention cognizant of predictable stress points and building resilience through social community. Parents may then be better positioned to support their child in looking forward.
本综合性综述的目的是探讨杜氏肌营养不良症（DMD）患儿家长照顾者的心理社会影响及治疗干预措施。检索了2010年至2020年间的电子数据库中的研究出版物。这包括医学索引数据库（Medline）、护理学与健康领域数据库（CINAHL）、心理学文摘数据库（PsycINFO）、教育资源信息中心数据库（ERIC）、教育资源中心数据库（ERC）和联合与补充医学数据库（AMED）。出现了四个核心主题：与杜氏肌营养不良症共存；了解与告知；过渡；以及建立复原力。照顾杜氏肌营养不良症患儿对家长的影响涉及他们生活的方方面面，会随时间变化，并有可识别的压力峰值点。未满足的家长信息和支持需求使家长在其角色中苦苦挣扎。过渡需要改变育儿行为，需要适应能力和复原力。建议未来的投入应侧重于预测家庭需求，针对可预测的压力点进行干预，并通过社会社区建立复原力。这样家长可能会更有能力支持孩子展望未来。
