"It is all about the fear of being discriminated [against]…the person suffering from HIV will not be accepted": a qualitative study exploring the reasons for loss to follow-up among HIV-positive youth in Kisumu, Kenya.
BACKGROUND
Youth represent 40% of all new HIV infections in the world, 80% of which live in sub-Saharan Africa. Youth living with HIV (YLWH) are more likely to become lost to follow-up (LTFU) from care compared to all other age groups. This study explored the reasons for LTFU among YLWH in Kenya.


METHODS
Data was collected from: (1) Focus group Discussions (n = 18) with community health workers who work with LTFU youth. (2) Semi-structured interviews (n = 27) with HIV + youth (15-21 years old) that had not received HIV care for at least four months. (3) Semi-structured interviews (n = 10) with educators selected from schools attended by LTFU interview participants. Transcripts were coded and analyzed employing grounded theory.


RESULTS
HIV-related stigma was the overarching factor that led to LTFU among HIV + youth. Stigma operated on multiple levels to influence LTFU, including in the home/family, at school, and at the clinic. In all three settings, participants' fear of stigma due to disclosure of their HIV status contributed to LTFU. Likewise, in the three settings, the dependent relationships between youth and the key adult figures in their lives were also adversely impacted by stigma and resultant lack of disclosure. Thus, at all three settings stigma influenced fear of disclosure, which in turn impacted negatively on dependent relationships with adults on whom they rely (i.e. parents, teachers and clinicians) leading to LTFU.


CONCLUSIONS
Interventions focusing on reduction of stigma, increasing safe disclosure of HIV status, and improved dependent relationships may improve retention in care of YLWH.
Department of Pediatrics, Georgetown University Medical Center, 4200 Wisconsin Ave, NW, Washington, DC 20026, USA. Hilary.T.Wolf@gunet.georgetown.edu.
Hilary T
HT
Wolf
Bonnie L
BL
Halpern-Felsher
Elizabeth A
EA
Bukusi
Kawango E
KE
Agot
Craig R
CR
Cohen
Colette L
CL
Auerswald
D000293:Adolescent; D016497:Adolescent Health Services; D005260:Female; D005500:Follow-Up Studies; D015658:HIV Infections / Q000523:psychology*; D006297:Health Services Accessibility; D006801:Humans; D007630:Kenya; D059012:Lost to Follow-Up; D008297:Male; D057545:Social Stigma; D055815:Young Adult