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Families with parents and children living with HIV described strategies to meet 3 common goals for normalisation

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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 …

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