Families with parents and children living with HIV described strategies to meet 3 common goals for normalisation
QUESTION: What are the long term goals and normalisation strategies of families with parents and children living with HIV?
Design
Interpretive study based on symbolic interaction and using ethnographic data collection methods.
Setting
Urban paediatric referral centre in the US.
Participants
21 participants: 9 children with HIV infection (age range 7–15 y), 6 mothers and 1 father with HIV infection (mean age 38 y), and 5 uninfected adult family member caregivers (age range 30–79 y). Participants were of diverse ethnicity.
Methods
Semistructured, open ended interviews were conducted individually for children (20–45 min) and adults (60–120 min), except for 1 mother and son who requested to be interviewed together. The interview guide included questions on family composition, disease disclosure, and symptom management. Interviews were audiotaped, transcribed verbatim, and data were analysed using constant comparison. Repeat interviews with 4 key participants validated and expanded findings.
Main findings
Families had 3 goals to establish normalcy and stability: staying healthy, facilitating children's participation in school and social activities, and enhancing social and emotional wellbeing …
