Attitudes toward transitioning in youth with perinatally acquired HIV and their family caregivers

J Assoc Nurses AIDS Care. 2014 Mar-Apr;25(2):168-75. doi: 10.1016/j.jana.2013.01.007. Epub 2013 Jul 1.

Abstract

This study investigated the preparedness and views of patients with perinatally acquired HIV and their family caregivers about transitioning to adult medical care. Fifteen participants (ages 15-24 years) with perinatally acquired HIV and eight family caregivers participated in structured interviews. All interviews were recorded and analyzed for themes using qualitative research methodology. Three major themes emerged: (a) perceived lack of readiness for transition, (b) fear of change and anxiety about entering the adult health care system, and (c) burgeoning personal responsibility that comes with age. Participants also offered suggestions to improve the transition experience, including starting the process early with specific guidelines. All patients and family caregivers wanted early knowledge about transition; these individuals could be an important resource to find potential solutions to guide the transition process. Clinical outcomes must be assessed in patients undergoing transition to determine the effect on management of medical disease, and protocols must be developed.

Keywords: AIDS; HIV; adolescent; health care transition.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Attitude*
  • Caregivers / psychology*
  • Delivery of Health Care
  • Family / psychology*
  • Female
  • HIV Infections / congenital*
  • HIV Infections / therapy
  • Humans
  • Interviews as Topic
  • Male
  • Qualitative Research
  • Surveys and Questionnaires
  • Transition to Adult Care*
  • Young Adult