Case management has been proposed as a strategy for promoting comprehensive, cost effective, home care to persons with HIV-related illnesses. Although informal caregivers play a vital role in providing or supplementing home care to persons with HIV infection and may themselves be at risk for altered physical and emotional health outcomes, little research is available regarding how they are effected by case management strategies. This project proposes an extension to a 1989-92 NIH NCNR-funded study (R01 NR02281) that examines the effects of case managed home care for persons with HIV infection, but has no assessment of the effects of case management on the informal caregivers. This project parallels the large study and is designed as a randomized control trial comparing the informal caregivers of HIV infected persons receiving case managed home care with the informal caregivers receiving non case managed, routine home care. Informal caregiver subjects will be admitted to this study upon consent following patient entry into the larger study. Over 382 subjects are projected as eligible for participation during the one year period of data collection. The median duration of participation per client is expected to be approximately 3 months. Evaluation will be based upon measures of physical and emotional health, satisfaction with formal services, and a descriptive account of the informal caregiver role over the course of home care. The physical/emotional health and satisfaction outcome variables will be measured at monthly intervals and associations assessed through repeated cross-sectional multiple regression for the varying subject groups at varying times. Impact of the case management intervention and other significant variables (e.g., patient disease severity) on the outcomes will be assessed, as well as interrelatedness of the outcome measures. Data concerning the informal caregiver role will also be collected at monthly intervals. Codes will be derived from respondent's answers to open-ended questions and frequencies will be assessed. Questions that generate answers that are too idiosyncratic or abstract for coding will be thematically analyzed and reported in a more anecdotal fashion. Results of the study will provide health care planners/policymakers with specific data on the advantages and disadvantages of case management for informal HIV/AIDS caregivers and descriptive data on the role and extent of the informal caregiver resource relative to case managed and routine home care.
