title: Caring for caregivers of people living with HIV in the family: a response to the HIV pandemic from two urban slum communities in Pune, India.
abstract: BACKGROUND
  In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India.
  
  
  METHODS
  A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically.
  
  
  RESULTS
  Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training.
  
  
  CONCLUSIONS
  Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.
authors.affiliation: National AIDS Research Institute, Pune, India.
authors.forename: Rewa
authors.initials: R
authors.lastname: Kohli
authors.forename: Vidula
authors.initials: V
authors.lastname: Purohit
authors.forename: Latika
authors.initials: L
authors.lastname: Karve
authors.forename: Vinod
authors.initials: V
authors.lastname: Bhalerao
authors.forename: Shilpa
authors.initials: S
authors.lastname: Karvande
authors.forename: Sheela
authors.initials: S
authors.lastname: Rangan
authors.forename: Srikanth
authors.initials: S
authors.lastname: Reddy
authors.forename: Ramesh
authors.initials: R
authors.lastname: Paranjape
authors.forename: Seema
authors.initials: S
authors.lastname: Sahay
mesh_terms: D017028:Caregivers / Q000706:statistics & numerical data*; D004645:Empathy; D005190:Family; D005260:Female; D017144:Focus Groups; D015658:HIV Infections / Q000453:epidemiology* / Q000451:nursing*; D006701:Home Nursing; D006801:Humans; D007194:India; D008297:Male; D058873:Pandemics; D011204:Poverty Areas; D014505:Urban Population / Q000706:statistics & numerical data*