Adolescent response to having an HIV-infected mother

Abstract

In this study, late adolescents/early adults whose mothers were living with HIV (MLH) were interviewed in order to explore their perceptions of what it had been like for them to grow up under the shadow of their mothers’ illness. Adolescents were asked to describe what the difficult aspects of growing up with an HIV-positive mother were as well as what, if any, were the more rewarding aspects. Interviews were conducted in 2009–2010 with a random sample of 40 adolescents being followed up in a longitudinal assessment study. All study participants were English or Spanish speaking. Mean age was 18.9 years (SD = 1.9); 67.5% were Latino; 27.5% African-American; and 5% other/multiracial. Results revealed that growing up with an HIV-positive mother had both challenges as well as rewards. On the challenge side, adolescents mentioned six main issues: (1) disappointment regarding mothers’ missing of childhood activities and events; (2) worry about mothers’ health; (3) worry about the possibility of mothers’ death; (4) increased burden of adult responsibilities/caregiving; (5) feelings of secrecy/stigma associated with HIV/AIDS; and (6) need to self-monitor behavior and communication to avoid maternal stress. On the positive side, adolescents mentioned three main rewarding aspects of growing up with an HIV-positive mother: increased closeness in the mother–child relationship; fostering of positive personality traits (e.g., resilience, gratitude, open-mindedness); and “perks” accorded to HIV-affected families.

Keywords:

• HIV-positive mothers
• family functioning
• chronic illness
• qualitative interviews
• longitudinal study

Acknowledgements

This research was supported by the National Institute of Mental Health to the first author [Grant Number 5R01MH057207].