改善乌干达心力衰竭患者的护理：对患者及其医护人员的系列深入访谈
Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals.
作者信息
Namukwaya Elizabeth, Grant Liz, Downing Julia, Leng Mhoira, Murray Scott A
机构信息
Makerere University College of Health Sciences, P.O BOX 7072, Kampala, Uganda.
Global Health Academy, The Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK.
出版信息
BMC Res Notes. 2017 May 25;10(1):184. doi: 10.1186/s13104-017-2505-0.
BACKGROUND
The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda.
METHODS
Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research.
RESULTS
Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach.
CONCLUSION
Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care.
背景
正如高收入国家文献中所表明的，晚期心力衰竭（HF）患者预后较差，且伴有多维度痛苦，因此有必要将姑息治疗纳入晚期HF患者的护理中，以满足这些需求并改善他们的生活质量。这些需求具有主观性，在乌干达这个具有不同社会文化背景的低收入国家，尚未从患者和医护人员的角度进行描述。本研究旨在通过了解患者和医护人员对HF患者在病程中需求的看法来填补这一知识空白，以使全科医生、心脏病专家和姑息治疗临床医生能够制定指南，在乌干达提供以患者为中心的切实可行的护理。
方法
在穆拉戈国家转诊医院（MNRH）对HF患者进行了一系列定性深入访谈，这些患者是经过有目的抽样和招募的，直至达到主题饱和。在患者住院期间及其家中，在病程中的三个时间点进行深入访谈，每次访谈间隔3个月。对MNRH中管理HF的医护人员进行了一次性访谈。我们在数据分析中采用了扎根理论方法。该研究获得了乌干达国家科学技术委员会的批准。
结果
对21名患者及其护理人员进行了48次访谈，对医护人员进行了8次访谈。确定了多维度需求，包括身体、心理、社会、精神和信息需求。这些突出了对正常功能、控制、应对和适应生活变化以及寻找意义的基本需求。与其他多维度需求相比，医护人员对精神需求的认识较少。信息需求普遍未得到满足。患者和医护人员建议改进护理，这与慢性病护理建议以及世界卫生组织加强卫生系统方法的六大支柱相一致。
结论
乌干达的HF管理需要一种针对多维度需求、采用多学科护理并加强卫生系统的方法，而这些都是姑息治疗的重要原则。
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