The broad objectives of this study are to develop an understanding of factors that create barriers to or promote health-related self-care in youth with perinatally-acquired HIV disease (YPAHD) and discover how family caregivers manage transitioning aspects of self-care to YPAHD. This is necessary to devise and test theory-based interventions to promote self-care and its transition within families, thereby improving health outcomes for YPAHD. As advances in treatment continue to increase their longevity, YPAHD must assume increasing responsibilities for managing their HIV self-care as they get older.
Specific aims are to(1) describe the HIV self-care practices of YPAHD; (2) examine whether factors known to influence self-care in other chronic illnesses impact HIV self-care; (3) ascertain the influence of family self-care beliefs on HIV self-care; and (4) develop a Grounded Theory to describe and explain how family caregivers manage transitioning aspects of self-care to YPAHD. Study participants include primarily African-American and Hispanic YPAHD (n= 196) and their primary, family caregiver (n=196) residing in New York City. This mixed-model study design will use triangulated data sources. Participants will complete instruments that measure the relationship between the outcome measure of HIV self-care and factors hypothesized to influence HIV self-care: self-concept, social support, family functioning, illness severity, treatment intensity, diagnosis disclosure to YPAHD, and caregiver HIV serostatus. A subset of participants from each group (n=20-30) will participate in two, individual, face-to face interviews, 2 weeks apart to elicit descriptive responses about HIV self-care activities, beliefs, and goals. Correlational and regression analyses and t-tests will be used to predict whether factors known to influence self-care in other chronic childhood illnesses impact HIV self-care. Developing a substantive theory of the phenomenon will allow for discovery of the basic social problem inherent in HIV self-care transitions within families as well as illustrate the conditions and strategies used by caregivers and YPAHD which influence and shape the transition process. An integrative analysis of the study findings will result in a more descriptive account of the process of HIV self-care than any one methodology could provide. Adopting this perspective supports both the descriptive, hypothesis-testing, and exploratory nature of the study aims. This innovative approach draws on Orem's Self-Care Deficit Theory of Nursing and will further our ability to develop evidence-based interventions that focus on critical junctures in the trajectory of self-care to insure successful self-care transitions within families that will improve the health outcomes for YPAHD. ? ? ?
