title: Live with the Disease Like You Used to Before You Knew You Were Infected: A Qualitative Study Among 10-Year Survivors Living with HIV in Haiti.
abstract: In 2003, the Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections (GHESKIO), a nonprofit organization, began administering antiretroviral therapy (ART) to its patients. This practice transformed HIV from a fatal disease to a more manageable chronic condition. However, relatively few studies focus on the experiences of survivors. This study provided a unique opportunity to interview patients who survived at least 10 years after being treated with ART at GHESKIO. The goal of the study was to elicit from patients their perspectives on what enabled them to survive with AIDS. Grounded Theory, a qualitative research method was used to guide data collection, coding, and analysis. Individual interviews were conducted, audio-taped, transcribed and analyzed in Creole, and translated into English. Data saturation was reached at 25 participants. Of which, 64% were women, the mean age was 49, range of 43-55 years, 24% were married, 44% had not completed elementary school, and 72% had no income, the remaining participants had incomes ranging from $1000 to $5000 annually. Qualitative analysis resulted in 681 codes, which were grouped into six categories: being spiritually grounded, having supportive interactions with providers, caring for children, setting personal goals, persevering and living life as usual, and maintaining strict medication adherence practices. The overarching theory was that having a reason to live despite one's circumstances and living life as usual enabled one to survive. Having a strong spiritual foundation coupled with supportive family and providers motivated participants to live and adhere to their ART. As the number of patients who are living longer with HIV in Haiti increases, results from this study will be important in helping tailor interventions that enhance their overall quality of life.
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .
authors.forename: Samuel
authors.initials: S
authors.lastname: Pierre
authors.affiliation: 2 Center for Global Health , Weill Cornell Medical College, New York, New York.
authors.forename: Vanessa
authors.initials: V
authors.lastname: Riviera
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .
authors.forename: Circee Phara
authors.initials: CP
authors.lastname: Jean
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .
authors.forename: Marie Jude Jean
authors.initials: MJ
authors.lastname: Louis
authors.affiliation: 2 Center for Global Health , Weill Cornell Medical College, New York, New York.
authors.forename: Lindsey K
authors.initials: LK
authors.lastname: Reif
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .
authors.forename: Patrice
authors.initials: P
authors.lastname: Severe
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .
authors.forename: Vanessa
authors.initials: V
authors.lastname: Rouzier
authors.affiliation: 2 Center for Global Health , Weill Cornell Medical College, New York, New York.
authors.forename: Warren D
authors.initials: WD
authors.lastname: Johnson
authors.affiliation: 1 Haitian Study Group on Kaposi's Sarcoma and Opportunistic Infections , GHESKIO, Port-au-Prince, Haiti .|2 Center for Global Health , Weill Cornell Medical College, New York, New York.
authors.forename: Jean W
authors.initials: JW
authors.lastname: Pape
authors.affiliation: 2 Center for Global Health , Weill Cornell Medical College, New York, New York.
authors.forename: Daniel W
authors.initials: DW
authors.lastname: Fitzgerald
authors.affiliation: 2 Center for Global Health , Weill Cornell Medical College, New York, New York.|3 Division of General Medicine, Department of Medicine, Weill Cornell Medical College , New York, New York.
authors.forename: Margaret L
authors.initials: ML
authors.lastname: McNairy
authors.affiliation: 4 Brooklyn Health Disparities Center, SUNY Downstate Medical Center , New York, New York.
authors.forename: Carla
authors.initials: C
authors.lastname: Boutin-Foster
mesh_terms: D000293:Adolescent; D000328:Adult; D044966:Anti-Retroviral Agents / Q000008:administration & dosage / Q000627:therapeutic use*; D002648:Child; D003376:Counseling; D005260:Female; D066296:Grounded Theory; D015658:HIV Infections / Q000188:drug therapy / Q000523:psychology*; D006205:Haiti; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D055118:Medication Adherence; D008875:Middle Aged; D009042:Motivation; D036301:Qualitative Research; D011788:Quality of Life; D012944:Social Support; D029181:Spirituality; D017741:Survivors / Q000523:psychology*
chemical_list: D044966:Anti-Retroviral Agents
keywords: HIV; antiretroviral therapy (ART); grounded theory; qualitative; survivors