Living with Stigma: The Experience of Tuberculosis Patients and Family Caregivers in Indonesia Rakhmawati Windy1,*, Nilmanat Kittikorn2, Hatthakit Urai2 1Faculty of Nursing, University of Padjadjaran, Indonesia 2Faculty of Nursing, Prince of Songkla University, Thailand *Corresponding Author: Windy Rakhmawati, Faculty of Nursing, University of Padjadjaran, Indonesia Email: windy.rakhmawati@unpad.ac.id
Online published on 23 December, 2019. Abstract Background People with tuberculosis (TB) lead to emotional distress because of stigma. Their stigma could extend to other family members particularly caregiver. Therefore, stigma could be a hindering factor on the successful of TB control. Objective This study aimed to explore the experience of stigma among TB patients and family caregivers in Indonesia. Material and Method A qualitative study was conducted among five TB patients and four family caregivers who had experienced with TB stigma, had a previous TB diagnosis (patients) or caring TB patients (caregivers), and can speak Indonesian or Sundanese language. Data were collected by in-depth interview, and content analysis was used for the data analysis. Findings Three main themes emerged from participants’ experiences for being stigmatized. The first theme was TB meaning, including TB is as a dreadful disease, as a severe disease, and as a dangerous disease. Second theme was psychosocial aspect of TB stigma, consisting of feeling shame and social exclusion, which were influenced by their fear of causal transmission and blame from others. Finally, strategies to cope with stigma, including isolating themselves, keeping secrecy of TB, ignoring, and convincing others. Conclusion These findings suggest that persons affected by TB stigma need support from health care providers. These findings will be benefits to health professionals to develop stigma reduction intervention for patients and family caregivers to cope with TB and its stigma. Top Keywords Family caregiver, Indonesia, Patient, Stigma, Tuberculosis. Top |