Parker D, Maddocks I, Stern L M
Flinders University of South Australia, Daw Park, Australia.
J Paediatr Child Health. 1999 Jun;35(3):245-50. doi: 10.1046/j.1440-1754.1999.00351.x.
This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families.
Semistructured interviews were conducted in South Australia with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illness.
Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives.
The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.
本研究探讨姑息治疗服务在肌营养不良症和脊髓性肌萎缩症患者护理及其家庭支持方面的潜在作用。
在南澳大利亚对9名肌营养不良症或脊髓性肌萎缩症患者的遗属和4名在世家庭成员进行了半结构化访谈。访谈中探讨的问题包括：（i）家庭对护理困难的看法；（ii）可用于帮助他们的心理和物质资源；（iii）家庭对疾病终末期管理的回忆。
确定的重大问题包括：（i）护理缺乏协调且难以获得熟练、称职的护理人员；（ii）对兄弟姐妹缺乏支持；（iii）丧亲护理不足；（iv）关于通气支持选项和预立医疗指示的讨论有限。
肌营养不良症和脊髓性肌萎缩症患者及其家庭的终末期护理需要改进。尽管许多患有这些疾病的人会在急性事件后死亡，但姑息治疗服务可能适用于那些需要在家中接受一段时间终末期护理的人。
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