Pediatric adherence: perspectives of mothers of children with HIV.

ABSTRACT

This study approached pediatric adherence practices from the perspective of mothers of children with HIV in the USA. The study aimed to articulate what is involved in the daily life experience of giving or supervising a child's HIV medication (i.e., adherence practices) in order to clarify, in more dynamic terms than is often found in adherence research, what promotes or impedes adherence. A team-based qualitative analytic approach was used to analyze the narrative responses of 71 maternal caregivers of children with HIV to interview questions regarding the activities and stresses of caring for a child with HIV. Four themes of dealing with medication on a daily basis that impacted mothers' adherence practices emerged from the analysis: (1) Mothers' attitudes and feelings related to adherence practices. (2) The impact of the medications on adherence practices. (3) Interactions of mothers and children related to adherence practices. (4) Developmental issues and responsibility for medication adherence. These themes, taken together, demonstrate the contextual and longitudinal factors that impact adherence and illustrate the complexity of influences on adherence practices. We found that adherence practices were impacted in a positive way by mothers' commitment to adherence, and in a negative way by feelings of stigma and guilt, by the effects of bereavement on children and by children adopting their mothers' attitudes about medications. The interactive process of giving medication was shaped by children's behavior, mothers' developmental expectations for children, and, for mothers with HIV, their adherence for themselves. We found that pediatric adherence often came at a cost to the caregiving mother's well-being.