Abstract

The South African health system faces major challenges: crumbling infrastructure, shortage of beds and health professionals, and a high burden of diseases such as Tuberculosis and HIV/AIDS. The emergence of Drug Resistant Tuberculosis has made matters worse, as some of the burden of care for patients was transferred from nurses at hospitals to families in communities after patient discharge. This study explores and describes experiences of family caregivers caring for family members with Drug Resistant Tuberculosis living at home. The data from purposively selected family caregivers, caring for family members living with Drug Resistant Tuberculosis, were collected through in-depth interviews using a pretested interview guide. Saturation was reached at the 11th interview. All interviews were audio-taped, transcribed verbatim, analysed using Tech’s Eight Steps for Data Analysis, and emerging themes reported. Three themes that emerged were: issues in relation to provision of care, caregiver’s attitudes towards caregiving, and community attitudes and practices towards family caregivers. The study showed that respondents experienced challenges such as buying and preparing of nutritious food, attending to hygiene needs and management of treatment of side effects. Poverty, finance and time were barriers to caregiving roles. Participants experienced physical and psychological exhaustion, social exclusion, and stigmatisation. There is a need to increase coverage of the Ward-Based Outreach Teams and Community Healthcare Workers, and intensification of TB and HIV/AIDS health education in communities. Training and education on infection control, palliative treatment, and home-based medical care should be provided to families before a patient is discharged. Stakeholder relations need to be improved and collaboration fostered.

摘要

南非卫生系统面临重大挑战：基础设施崩溃，床位和卫生专业人员短缺，以及结核病和艾滋病毒/艾滋病等疾病的高负担。耐药结核病的出现使情况变得更糟，因为病人出院后，病人的某些护理负担已从医院的护士转移到社区的家庭中。这项研究探索并描述了家庭护理人员照顾在家中患有抗药性结核病的家庭成员的经历。通过使用预先测试的访谈指南，通过深入访谈收集了有意选择的家庭护理人员的数据，这些数据照顾的是耐药性肺结核的家庭成员。在第11次面试时达到饱和。所有采访都录音，逐字记录，使用Tech的“数据分析的八个步骤”进行了分析，并报告了新兴主题。出现了三个主题：与提供照料有关的问题，照料者对照料者的态度以及社区对家庭照料者的态度和做法。该研究表明，受访者遇到了挑战，例如购买和准备营养食品，注意卫生需求和管理副作用。贫穷，财务和时间是照顾角色的障碍。参与者经历了身心疲惫，社会排斥和污名化。有必要扩大对以病房为基础的外展队和社区保健工作者的覆盖范围，并在社区中加强结核病和艾滋病毒/艾滋病的健康教育。有关感染控制，姑息治疗的培训和教育，病人出院前应向家庭提供家庭医疗服务。利益相关者之间的关系需要改善和促进合作。