Augustussen Mikaela, Hounsgaard Lise, Pedersen Michael Lynge, Sjøgren Per, Timm Helle
a Ilisimatusarfik , University of Greenland , Nuuk , Greenland.
c Institute of Nursing and Health Science, University of Greenland, Nuuk & OPEN, Department of Clinical Research , University of Southern Denmark , Odense , Denmark.
Int J Circumpolar Health. 2017;76(1):1335148. doi: 10.1080/22423982.2017.1335148.
Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid's Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives' level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives' level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative's current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives' needs is essential to develop an adequate palliative care in a range of settings.
格陵兰岛的晚期癌症姑息治疗由当地卫生专业人员、国家英格丽德女王医院以及丹麦的里格霍斯医院提供。为了改善和发展对晚期癌症患者亲属的护理，我们开展了一项混合方法研究，调查亲属对护理和治疗的满意度水平以及他们当前的主要担忧。目的是调查亲属对晚期癌症护理的满意度水平，并揭示他们当前的主要担忧。FAMCARE - 20问卷被翻译成格陵兰语并进行了预测试。问卷还补充了关于亲属当前主要担忧的开放式问题，并采用现象学诠释学方法进行分析。我们询问了之前参与一项前瞻性研究的格陵兰晚期癌症患者，他们最亲近的成年亲属是否愿意参与该研究。进行了电话访谈，亲属们回答了问卷。通过电话共联系了32名亲属，其中30名（94%）完成了FAMCARE - 20问卷并回答了开放式问题。满意度最高的是医院病床的可获得性（66%），亲属最不满意的是在治疗和护理决策中缺乏参与（71%）以及癌症诊断所需的时间长度（70%）。对开放式问题的回答显示，亲属在从卫生专业人员那里获取信息方面面临挑战。他们感到缺乏安全感，对未来感到担忧，并且在家中缺乏支持。该研究表明晚期癌症患者亲属存在相当程度的不满。我们强烈建议关注心理社会护理，增加信息获取渠道，并让亲属参与姑息治疗服务的决策和未来规划。评估亲属的需求对于在一系列环境中开展充分的姑息治疗至关重要。
