Carswell Claire, Forbes T, Wilson A, Laurente G, Yaqoob M, Gilbert P, Bolton S, Burns A, Moran C, O'Neill S, McGarry J, O'Hare N, McGuigan K, McKeaveney C, McVeigh C, Reid J, Rej S, Walsh I, Noble H
Department of Health Sciences, University of York, York, UK.
School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
BMC Nephrol. 2025 Jul 1;26(1):303. doi: 10.1186/s12882-025-04209-w.
Patients with kidney failure who are older, frail and have multiple conditions can choose not to receive dialysis and instead receive conservative management, which focuses on symptom management and maximising quality of life. Many of these patients rely on support from informal caregivers, such as family and friends. However, the experiences of informal caregivers of people who choose conservative management, particularly towards the end of life, are generally unknown.
To explore the experiences of informal caregivers of people receiving CM for kidney failure alongside healthcare professionals who provide treatment and care to people receiving CM to identify and understand the unmet needs of informal caregivers.
Informal caregivers of patients receiving conservative management (n = 38) were recruited from five sites, two in England and three in Northern Ireland. Semi-structured interviews focused on the experiences of the caring role were conducted with informal caregivers and thematically analysed. Focus groups and one semi-structured interview were conducted at two sites (one in Northern Ireland, one in England) with healthcare professionals who had experience caring for people receiving conservative management (n = 15). The focus groups explored their experience of supporting informal caregivers and their perspectives on the needs of informal caregivers. These were thematically analysed, and the analysis from the two data sets (informal caregivers and healthcare professionals) was integrated.
Three themes and nine subthemes were synthesised from the data. These included: Defining the role of 'carer', which captured perspectives on the caring role and motivations for caring; keeping the end in mind, which described attitudes and awareness of disease progression and death; and balancing the burden, which encapsulated the ways informal caregivers managed the burden of caring.
Informal caregivers had multifaceted experiences and felt well-supported by renal healthcare teams. Cultural factors strongly influence caregivers' experiences of the role, while communication and the provision of information were identified as the key needs of caregivers.
Not applicable.
年龄较大、身体虚弱且患有多种疾病的肾衰竭患者可以选择不接受透析，而是接受以症状管理和提高生活质量为重点的保守治疗。这些患者中的许多人依赖家人和朋友等非正式护理人员的支持。然而，选择保守治疗的患者的非正式护理人员的经历，尤其是在生命末期的经历，通常并不为人所知。
探讨为接受肾衰竭保守治疗的患者提供护理的非正式护理人员的经历，以及为接受保守治疗的患者提供治疗和护理的医疗保健专业人员的经历，以识别和了解非正式护理人员未得到满足的需求。
从五个地点招募了接受保守治疗的患者的非正式护理人员（n = 38），其中两个在英格兰，三个在北爱尔兰。对非正式护理人员进行了以护理角色经历为重点的半结构化访谈，并进行了主题分析。在两个地点（一个在北爱尔兰，一个在英格兰）与有照顾接受保守治疗患者经验的医疗保健专业人员（n = 15）进行了焦点小组讨论和一次半结构化访谈。焦点小组探讨了他们支持非正式护理人员的经验以及他们对非正式护理人员需求的看法。对这些进行了主题分析，并将两个数据集（非正式护理人员和医疗保健专业人员）的分析结果进行了整合。
从数据中综合出了三个主题和九个子主题。这些主题包括：定义“护理人员”的角色，其中涵盖了对护理角色的看法和护理动机；铭记终点，描述了对疾病进展和死亡的态度和意识；平衡负担，概括了非正式护理人员管理护理负担的方式。
非正式护理人员有多方面的经历，并感到得到了肾脏医疗团队的良好支持。文化因素强烈影响护理人员对该角色的体验，而沟通和信息提供被确定为护理人员的关键需求。
不适用。
