Guo Ping, Alajarmeh Sawsan, Alarja Ghadeer, Alrjoub Waleed, Al-Essa Ayman, Abusalem Lana, Mansour Asem, Sullivan Richard, Shamieh Omar, Harding Richard
School of Nursing, Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.
Palliat Med. 2021 May;35(5):916-926. doi: 10.1177/02692163211000236. Epub 2021 Mar 26.
Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population.
To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers.
A qualitative study using semi-structured interviews.
SETTING/PARTICIPANTS: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis.
Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment.
This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.
尽管姑息治疗如今是全民健康覆盖下的一项基本医疗服务，但为难民确保获得医疗服务及适当护理对这一庞大群体而言是一项特殊挑战。
确定约旦成年癌症晚期难民及其非正式照料者的需求和经历。
一项采用半结构式访谈的定性研究。
地点/参与者：在约旦的两家医院进行了目的抽样，以实现年龄、性别、原籍国和初步诊断方面的异质性。
29名难民（22名患者，7名照料者）参与了研究，产生了四个主题：（1）心理困扰与维持社会支持。难民经常面临未得到满足的心理社会需求。然而，据报告心理社会支持要么不存在，要么很有限。（2）知识与不确定性。由于缺乏信息以及医疗服务提供者与患者之间沟通不畅，不确定性导致了严重困扰。（3）家庭焦虑与支持角色。远离祖国使患者和照料者脱离了更广泛的社会支持网络，这增加了照料者的焦虑和责任。（4）复合创伤与贫困。许多难民经历过与战争相关的创伤，这可能影响他们的身心健康。他们面临着药品和治疗费用上涨导致的严重金融危机。
本研究揭示了破碎的家庭和网络对癌症晚期社会支持的影响，以及该疾病给难民带来的复合创伤。详细的以患者为中心的评估以及对心理社会支持的重视至关重要，居家护理不应假定社区会为患者居家提供支持。
