Caregivers’ Experiences in Providing Care for Muslim Patients with Terminal AIDS

This phenomenological study aimed to describe and explain the caregivers’ experiences in providing care for Muslim patients with terminal AIDS. Informants included ten primary caregivers of Muslim patients with AIDS, knowing that the  patients were in the terminal stage, and providing care for at least 1 month. Data were obtained using in-depth interviews and non-participant observation. Data were analyzed using van Manen’s guideline. The caregivers described the meaning of caring as 1) doing everything for extending life of their loved one, 2) doing the best they could make the patient live happily at the end of life, 3) taking close care of both body and mind like nurturing a child, and 4) caring for the patient to live worthly as a normal person. Caring for the dying patients with AIDS could be divided into 3 phases, including 1) the end of life care phase; caring behaviors in this phase included providing hygiene and comfort care, encouraging adequate diet/food, supervising patients’ adherence to medication, alleviating suffering symptoms, being with the patients, supporting patients’ needs, empowering patients’ will to live, keeping the HIV diagnosis confidential, staying in remembrance of Allah, and preventing HIV infection from care; 2) the terminal and the last day phase; caring behaviors during this phase included letting the patients be with their loved one, helping patients finish unfinished business, asking for forgiveness, staying in remembrance of Allah at the last breath; and 3) the bereavement phase; caring behaviors during this phase included reading Quran, keeping mourning, and passing merit to the dead. The informants reported both negative and positive impacts as a result of caring for the patients. Negative consequences were: 1) restlessness and poor physical health, 2) emotional suffering such as stress, anxiety, discouragement, being easily irritated, 3) loss of income and being indebt, 4) social isolation, and 5) not being able to perform religious practices as usual. Positive consequences were: 1) being proud of being a caregiver, and 2) gaining good experience. The results of this study provided directions and suggestions for improve the quality of care for the Muslim patients with terminal AIDs and their families.