Fitzsimons D, Mullan D, Wilson J S, Conway B, Corcoran B, Dempster M, Gamble J, Stewart C, Rafferty S, McMahon M, MacMahon J, Mulholland P, Stockdale P, Chew E, Hanna L, Brown J, Ferguson G, Fogarty D
Nursing Research and Development, Belfast City Hospital, Belfast, Northern Ireland.
Palliat Med. 2007 Jun;21(4):313-22. doi: 10.1177/0269216307077711.
There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited.
This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease.
The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis.
Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death.
Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed.
文献中已达成共识，慢性病患者的临终关怀不尽人意，但针对这一人群具体需求的研究有限。
本研究旨在采用混合方法和案例研究方法，从患者、其重要他人以及负责其护理的临床团队的角度，探索非癌症诊断患者的姑息治疗需求。患者（n = 18）被诊断为终末期心力衰竭、肾衰竭或呼吸系统疾病。
所有患者均完成了36项简短健康调查量表以及医院焦虑抑郁量表。分别与每位患者及其重要他人进行了非结构化访谈（n = 35）。随后与多专业临床团队进行了焦点小组讨论（n = 18）。定量数据采用简单描述性统计方法进行分析。所有定性数据均进行录音、转录，并采用柯莱齐定性分析方法进行分析。
健康状况恶化是此次分析得出的核心主题。这导致独立性下降、社会隔离和家庭负担加重。个人可支配的有限资源以及医院和社区服务提供的支持缓解了这些问题。总体而言，资源和支持被认为是匮乏的。本研究的所有参与者都对患者的未来表示担忧，一些患者描述了抑郁情绪或对即将到来的死亡必然性的接受。
本研究中死于慢性病的患者有诸多担忧且临床需求未得到满足。护理团队因可用资源匮乏而感到沮丧，并承认他们没有能力满足患者的整体需求。一些临床医生表示难以与患者及其家人就治疗的姑息性质进行坦诚交流。如果要充分满足慢性病终末期患者的需求，有必要更早、更有效地实施姑息治疗方法。
