Curtin University, Perth, WA, Australia.
Palliat Med. 2013 May;27(5):437-46. doi: 10.1177/0269216312455729. Epub 2012 Aug 20.
There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness.
The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group.
We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000-April 2011. Fifty-nine studies met the inclusion criteria.
This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care.
Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.
人们越来越意识到，不同的终末期疾病会给家庭照顾者带来不同的体验，而这些家庭的姑息治疗和支持性护理需求既有相似之处，也有独特之处。照顾患有运动神经元病的家庭成员可能会因这种终末期疾病通常具有快速和进行性的特点而承受特殊的压力。
本综述的目的是综合当代研究，对与运动神经元病家庭照顾者相关的研究结果进行全面总结，并强调一些减轻负担和提高该群体生活质量的建议干预措施。
我们对 2000 年 1 月至 2011 年 4 月期间在同行评审期刊上发表的英文运动神经元病患者家庭护理的实证研究进行了全面综述。符合纳入标准的研究有 59 项。
这项全面的文献综述与之前的研究一致，这些研究记录了运动神经元病家庭照顾者所经历的巨大负担和痛苦，并揭示了护理过程中的重要转折点，这些转折点有可能产生负面影响。诊断体验、辅助通气、认知变化和临终决策在短时间内带来了挑战。该综述还表明需要改善姑息治疗服务的可及性，并强调缺乏改善护理的干预措施。
迄今为止，运动神经元病家庭照顾者的负担和生活质量研究在研究领域占据主导地位。重点需要放在制定干预措施上，为运动神经元病家庭照顾者提供直接的实际和心理社会支持。
