Department of Nursing and Midwifery, Faculty of Allied Health Sciences, University of Sri Jayewardenepura, Nugegoda, Sri Lanka
Department of Nursing and Integrated Health Sciences, Faculty of Health Science, Kristianstad University, Kristianstad, Sweden.
BMJ Open. 2024 Apr 5;14(4):e080775. doi: 10.1136/bmjopen-2023-080775.
The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context.
Qualitative study with an exploratory design.
Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021.
A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis.
The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support.
The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.
在斯里兰卡，需要肾脏替代治疗的终末期肾病（ESKD）患者数量显著增加。这些患者大多数依赖血液透析，这给他们的家庭照顾者带来了巨大的负担。为了为患者及其家庭照顾者提供护理和支持，了解照顾者的护理体验至关重要。因此，本研究旨在探讨斯里兰卡背景下家庭照顾者在照顾接受血液透析的家庭成员时的负担和应对体验。
定性研究，探索性设计。
2021 年 10 月至 11 月，在斯里兰卡一家主要政府部门医院的血液透析单位招募家庭照顾者。
采用目的抽样法，从斯里兰卡一家主要政府教学医院招募了 11 名至少连续 3 个月照顾接受血液透析的家庭成员的家庭照顾者。通过个人半结构式电话访谈收集数据，并使用定性内容分析进行分析。
结果显示出一个总体主题，即“努力坚持，不放弃”，有四个类别：（1）照顾负担感到疲惫不堪，（2）因未能履行照顾责任而感到负担过重，（3）努力应对并在照顾中找到意义，（4）通过他人的支持应对照顾。
结果表明，家庭照顾者的负担是多方面的。尽管存在许多限制和痛苦，他们仍继续照顾接受血液透析的家庭成员，同时对负担过重的照顾情况进行调整。家庭照顾者需要通过社区支持系统获得心理社会支持和经济援助，包括家庭咨询，以确保在家庭成员的疾病轨迹期间能够坚持下去。预先护理计划对于减轻护理不确定性和满足终末期肾病患者的护理需求至关重要，特别是在资源有限的环境中。
