Medical School, University of Western Australia, Perth, Western Australia, Australia.
Khesar Gyalpo University of Medical Sciences of Bhutan, Thimphu, Bhutan.
J Palliat Care. 2022 Jul;37(3):401-409. doi: 10.1177/08258597211066248. Epub 2021 Dec 13.
Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness. This is a cross-sectional descriptive study. : Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used. Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future. This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.
姑息治疗旨在提高被诊断为晚期疾病的患者及其家属的生活质量。家庭成员通常在照顾重病亲人方面发挥着核心作用,他们有巨大的支持需求。在姑息治疗尚属新兴概念的不丹,迄今尚未评估家属的需求。本研究探讨了照顾被诊断为晚期疾病的亲人的不丹家庭成员的支持需求。这是一项横断面描述性研究。研究地点包括国家转诊医院、两家地区转诊医院、四家地区医院和基本保健单位(一级和二级),遍布不丹。通过有针对性的和滚雪球的抽样策略招募参与者。数据收集于 2019 年 5 月至 8 月。使用照顾者支持需求评估工具(CSNAT)。尽管面临意外挑战,但在 60 名确定的(77%)家属中,有 46 名参与了调查。23 名(50%)照顾的是患有晚期癌症的亲属,其余的是照顾非恶性疾病的亲属。本研究发现两组都有很高的支持需求。首要需求包括了解亲属的疾病、管理症状、提供个人护理、经济方面、处理自己的感受和情绪以及了解未来的情况。本研究将有助于为世界卫生组织推荐的姑息治疗公共卫生方法提供信息,该方法已针对不丹情况进行了修改,以实施一种具有成本效益的干预措施,改善患者和家庭的生活质量。