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Interpretive study based on symbolic interaction and using ethnographic data collection methods.
Urban paediatric referral centre in the US.
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.
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.
Families had 3 goals to establish …
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