Bee Penny E, Barnes Pamela, Luker Karen A
School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
J Clin Nurs. 2009 May;18(10):1379-93. doi: 10.1111/j.1365-2702.2008.02405.x. Epub 2009 Apr 8.
This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.
Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention.
Systematic review.
Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes.
Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a 'trial and error' approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination.
Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills.
Enhanced access to professional advice represents a potentially effective method of increasing carers' confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.
本文呈现了一项系统评价的结果，该评价考察了为晚期癌症患者提供居家姑息治疗和临终关怀的非正式照护者的实际信息需求。
现代临终关怀促使居家姑息治疗服务增加，非正式照护者承担了大部分护理责任。作为回应，卫生政策强调提供姑息治疗服务，使患者和照护者在疾病和死亡全过程都能得到充分支持。虽然照护者的情感需求已得到广泛研究，但他们在提供身体护理方面的实际需求尚未得到系统关注。
系统评价。
通过对研究和循证数据库进行电子检索、对学术期刊进行手工检索以及对非学术灰色文献网站进行检索来确定 eligible 文章。通过公认的非随机、观察性和定性文献综述指南评估研究质量。通过比较和对比研究结果来综合数据，以确定突出主题。
研究一致强调这种实际支持的缺乏，这通常与信息交流不足有关。这些不足通常表现为亲属在姑息治疗中采用“试错”方法。非正式照护者要求获得更多以实际为重点的信息、提高信息质量并增加传播方式。
文献综述表明，居家姑息治疗服务在协助非正式照护者获得实际护理技能方面关注不足。
增加获得专业建议的机会是增强照护者对其承担居家护理实际工作能力信心的一种潜在有效方法。有证据表明，护士和其他卫生服务提供者可以通过提供必要的信息和技能培训来更好地协助居家照护者，以促成此事。这可能需要照护者参与新教育干预措施的设计和测试。
