title: Living situation affects adherence to combination antiretroviral therapy in HIV-infected adolescents in Rwanda: a qualitative study.
abstract: BACKGROUND
  Adherence to combination antiretroviral therapy (cART) is vital for HIV-infected adolescents for survival and quality of life. However, this age group faces many challenges to remain adherent. We used multiple data sources (role-play, focus group discussions (FGD), and in-depth interviews (IDI)) to better understand adherence barriers for Rwandan adolescents. Forty-two HIV positive adolescents (ages 12-21) and a selection of their primary caregivers were interviewed. All were perinatally-infected and received (cART) for ≥ 12 months. Topics discussed during FGDs and IDIs included learning HIV status, disclosure and stigma, care and treatment issues, cART adherence barriers.
  
  
  RESULTS
  Median age was 17 years, 45% female, 45% orphaned, and 48% in boarding schools. We identified three overarching but inter-related themes that appeared to influence adherence. Stigma, perceived and experienced, and inadvertent disclosure of HIV status hampered adolescents from obtaining and taking their drugs, attending clinic visits, carrying their cARTs with them in public. The second major theme was the need for better support, in particular for adolescents with different living situations, (orphanages, foster-care, and boarding schools). Lack of privacy to keep and take medication came out as major barrier for adolescents living in congested households, as well the institutionalization of boarding schools where privacy is almost non-existent. The third important theme was the desire to be 'normal' and not be recognized as an HIV-infected individual, and to have a normal life not perturbed by taking a regimen of medications or being forced to disclose where others would treat them differently.
  
  
  CONCLUSIONS
  We propose better management of HIV-infected adolescents integrated into boarding school, orphanages, and foster care; training of school-faculty on how to support students and allow them privacy for taking their medications. To provide better care and support, HIV programs should stimulate caregivers of HIV-infected adolescents to join them for their clinic visits.
authors.affiliation: Kigali University Teaching Hospital/Department of Pediatrics, Kigali, Rwanda. mutwaph@gmail.com
authors.forename: Philippe R
authors.initials: PR
authors.lastname: Mutwa
authors.forename: Jennifer Ilo
authors.initials: JI
authors.lastname: Van Nuil
authors.forename: Brenda
authors.initials: B
authors.lastname: Asiimwe-Kateera
authors.forename: Evelyne
authors.initials: E
authors.lastname: Kestelyn
authors.forename: Joseph
authors.initials: J
authors.lastname: Vyankandondera
authors.forename: Robert
authors.initials: R
authors.lastname: Pool
authors.forename: John
authors.initials: J
authors.lastname: Ruhirimbura
authors.forename: Chantal
authors.initials: C
authors.lastname: Kanakuze
authors.forename: Peter
authors.initials: P
authors.lastname: Reiss
authors.forename: Sibyl
authors.initials: S
authors.lastname: Geelen
authors.forename: Janneke
authors.initials: J
authors.lastname: van de Wijgert
authors.forename: Kimberly R
authors.initials: KR
authors.lastname: Boer
mesh_terms: D000293:Adolescent; D019380:Anti-HIV Agents / Q000627:therapeutic use*; D017028:Caregivers; D002648:Child; D054540:Child, Orphaned; D030881:Disclosure; D004359:Drug Therapy, Combination; D005191:Family Characteristics; D005260:Female; D015658:HIV Infections / Q000188:drug therapy* / Q000523:psychology; D006801:Humans; D008297:Male; D055118:Medication Adherence; D018907:Privacy; D036301:Qualitative Research; D012432:Rwanda; D012574:Schools; D057545:Social Stigma; D012944:Social Support; D055815:Young Adult
chemical_list: D019380:Anti-HIV Agents