Experience in care, burden, and hope of the family members of HIV patients with and without a history of injecting drug use in Indonesia: An exploratory case

Abstract

Addiction and human immunodeficiency virus (HIV) patients suffer from many medical problems. Family can be a source of stress or relief for the patients. Therefore, we explored and compared the perception of family members of HIV patients with and without a history of injecting drug use (IDU) in Indonesia in the context of: (i) care provided for HIV patients, (ii) harmful impact of the disease for their relatives, and (iii) the hopes of family members concerning the future of their sick relatives. An exploratory case study was conducted with 79 family members: 36 family members of HIV patients with a history of IDU and 43 family members of HIV patients without a history of IDU. They were recruited through consecutive sampling in a HIV clinic in an urban setting in West Java. The Family Contact Information Support scale, the Family Member Impact scale, and the Hopefulness-hopelessness questionnaire were used to interview the family members. Most family members were spouses/partners (30%) or parents (28%). Families of HIV patients showed good satisfaction about the care given by health care providers. Families of HIV patients with a history of IDU perceived more worrying behaviour of their sick relatives compared to the families of HIV patients without a history of IDU. Hope for the future of their sick relatives was high and comparable in these two groups. This study shows that family members of HIV patients with a history of IDU perceived the disease as more harmful, which should be addressed by the healthcare providers to support the family and heighten their involvement in the treatment.

Keywords:

• co-existing problems
• drug use
• assessment
• service
• opiate dependence

Acknowledgment

The authors thank the interviewers, staffs from non-government organizations, Department of Clinical Psychology, Padjadjaran University, and staffs in Hasan Sadikin Hospital. S.I. received a fellowship from Radboud University, The Netherlands. All the authors have no conflict of interest.

Funding

Financial support was provided by “IMPACT” (Integrated Management of Prevention And Care and Treatment of HIV), a collaborative research funded by the European Commission (SANTE/2005/105–033) and contracted by CORDAID.