ABSTRACT
Objective: The family caregiver has a pivotal role in the management of HIV/AIDS patients and their well-being is consequently crucial as it could impact negatively on the quality of caregiving. This preliminary qualitative investigation intended to explore and describe the challenges and experiences of HIV/AIDS family caregivers in Terengganu, Malaysia. Methods: A convenient sample of family caregivers of HIV/AIDS patients who were aware of the diagnosis was enrolled. Recruitment was conducted in Hospital Sultanah Nur Zahirah, Kuala Terengganu, Malaysia and semi-structured interviews were used. Results: Results were transcribed into verbatim before being subjected to analysis. Twelve Muslim caregivers consented participation (age range = 18.0 - 81.0; female = 75.0%, mother/wife = 50.0%; married = 83.3%; ≤ primary school = 50.0%; and self-employed = 66.7%). The four major themes that emerged were challenges of caregiving, financial issues, stigma and discrimination, and support for caregivers. Additionally, caregivers did mention several positive aspects of their caregiving role including satisfaction from helping family member and improved family relationships. Conclusion: A variety of life aspects were negatively affected by caring for HIV patients, thus requiring a multidisciplinary approach to address such issues.
Subject(s)
HIV , Caregivers , Islam , Life Change Events , Patients , MalaysiaABSTRACT
Objectives: This paper mainly intended to review the experiences and challenges encountered particularly in mental health issues and to additionally analyze the methodologies used in studies involving HIV/AIDS informal caregivers. Methods: Four electronic databases; Science Direct, EBSCOhost, Ovid and Springer Link were searched for articles published in the past 10 years (2002 – 2012). Only full-text English articles related to research on care giving of HIV-infected adult patients were selected. Results: Twenty two out of 293 articles (7.5%) were reviewed, involving 2,765 caregivers in the USA (n=1,610), Africa (n=253), Asia (n=838) and Oceania (n=64) regions. A variety of age categories was involved in care giving with the youngest carer being 12 years old and the oldest, 60 years on average. Females and whites appeared to be dominant and 603 caregivers themselves were HIVpositive. The main outcomes measured were care giving burden, challenges and coping. Stress and depression, stigma and discrimination, insufficient support, role overload and extreme poverty were the main challenges experienced in care giving. Both qualitative (n=11) and quantitative (n=9) were the equally preferred types of study. Purposive sampling emerged as the most preferred sampling technique. Various instruments were utilized, but the Beck Depression Inventory (BDI) was the most popular particularly in quantitative studies. Conclusion: A variety of life aspects were negatively affected in the process of care giving for HIV/AIDS patients and studies of such nature commonly focused on caregivers’ psychosocial burden.