Narrative Navigation: HIV and (Good) Care in Aceh, Indonesia

Cult Med Psychiatry. 2019 Mar;43(1):116-133. doi: 10.1007/s11013-018-9602-y.

Abstract

In this article, I elaborate the concept of narrative navigation to analyze the subjective and intersubjective ways in which people struggle through experiences of illness by constructing multiple, ambiguous and non-linear narratives that may continuously change, as they reposition themselves within changing circumstances. Drawing on ethnographic material on HIV care in Aceh, Indonesia, I show how subjunctivity and open-endedness are crucial narrative ways in which people living with HIV, their relatives, medical doctors and support group workers adjust to possibilities and limitations of care over time, thereby continuously negotiating what good care may be. Unfolding within a changing Indonesian healthcare system, their narrative navigations reveal caregiving to be a complex and contradictory process, thereby problematizing boundaries between good care and neglect.

Keywords: Care; HIV/AIDS; Indonesia; Narrative navigation; Subjunctivity.

Publication types

  • Personal Narrative

MeSH terms

  • Caregivers
  • HIV Infections / psychology*
  • HIV Infections / therapy*
  • Humans
  • Indonesia
  • Patient Navigation / methods*
  • Primary Health Care*
  • Social Support
  • Social Work