title: The changing horizons of U.S. families living with pediatric HIV.
abstract: Although HIV is considered a chronic pediatric illness that is on the wane in the United States, challenges remain for those affected. The purpose of this longitudinal qualitative study was to examine the phenomenon of raising an HIV-positive child in the United States from the parental perspective. This study incorporated a longitudinal, phenomenological approach. The purposive sample included parents and guardians from 10 families from the northeast region of the United States with children diagnosed with asymptomatic HIV infection at the study onset. The researcher conducted in-depth interviews with the parents over a 7-year period. The common themes identified included: balancing normalcy with uncertainty, facing the multifaceted dilemmas associated with disclosure, and addressing the evolving medication and treatment challenges. The findings of this study can enhance the understanding of nurses and other health care professionals to improve policies, standards of care, and interventions for children and families living with pediatric HIV infection.
authors.affiliation: University of Massachusetts Lowell, 01854, USA. barbara_mawn@uml.edu
authors.forename: Barbara Ellen
authors.initials: BE
authors.lastname: Mawn
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D030881:Disclosure; D005260:Female; D015658:HIV Infections / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D055118:Medication Adherence; D009511:New England; D036301:Qualitative Research; D035501:Uncertainty