| Learning Objective #1: Understand better the issues and challenges faced by families raising children who have HIV infection | |||
| Learning Objective #2: Examine how the phenomenological approach can be utilized to explore family concerns from a longitudinal perspective |
Objective: The purpose of this study is to examine the phenomenon of raising a child with HIV from a longitudinal perspective. Design: The study design is a qualitative, phenomenological approach, based on the methodology suggested by Moustakas, over a 7-year period, 1996 - 2002. Participants: Ten families, each with at least one child with HIV participated. They included 5 biological, 4 adoptive, and one relative/guardian parents. Six of the children participated in the interviews as well. The average age of the children at study onset was 5, with a range of 3-7. Method: Open-ended, semi-structured annual interviews with parents/guardians were audio taped, transcribed and examined for themes. At the conclusion of the study, the researcher conducted a composite synthesis of the textural and structural descriptions of the data. Findings: Two major themes included the process of adaptation and the awareness of ongoing challenges. The process of adaptation included the tendency toward normalization with a focus on a positive attitude and reliance on immediate family support. The major ongoing challenges included the dilemma of disclosure, both to the child and the outside world, concerns about medication, and worry about the future teen years. Conclusions: Families expressed unique concerns about raising a child with HIV. In light of the persistent stigma and discrimination they face and the evolving standards of care for these children, the parents and their children have relatively few avenues of support or trusted sources of guidance as they pioneer this relatively unexplored journey. Implications: With an improved understanding of the challenges faced by children living with HIV, nurses and other health care providers can improve their communication and provision of support to these families.
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