HIV Infections
Conditions
Keywords
HIV/AIDS, Access to care
Brief summary
The purpose of this study is to find ways to get services to families living with HIV. New services for families living with HIV have been tried in places around the country. They seem to benefit many families. We will work with places in New York City that provide HIV services to find out more about family services. There, we will talk with people living with HIV, their family members, and their providers. Many questions need to be answered. For example: What kinds of services do families want? What would make it easier for families to come in for services? What would get in the way?
Detailed description
Families affected by HIV and AIDS require access to a comprehensive continuum of services. Findings from our own and other recently completed federally sponsored intervention trials and other studies could be used to help expand and enhance these services. However, a number of fundamental questions must first be answered about the feasibility of technology transfer. This study will address this issue by conducting individual interviews and focus groups with providers from 64 medical care and social service settings. Data will also be obtained through a comprehensive assessment of providers' capacities to serve families and to participate in technology transfer, including dimensions of organizational mission and leadership, availability of resources, and connections in the community. Thirty patients/clients served by each setting along with approximately twenty of their family members will also be individually interviewed to assess their needs for services, factors that affect their desire for family-oriented services, and their willingness to take part in psychosocial intervention studies. Data analysis will determine how initial setting readiness and setting capacities, and feedback about patient and family needs and willingness to participate in research, influence change in readiness, interest in capacity building and participation in research partnership activities. We will also conduct hierarchical data analyses to better understand how providers' readiness and capacities are related to clients'and families' service needs, barriers to participation, and willingness to participate in research. Study findings will guide efforts to implement family-oriented intervention research in frontline community service settings, and will help to establish a scientific framework for studying the process of technology transfer. Additionally, this project will lay the groundwork for sustained research collaboration with the network of community providers participating in this study to further explore ways to address the needs of families affected by HIV/AIDS.
Interventions
None listed
Sponsors
Memorial Sloan Kettering Cancer Center
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Inclusion Criteria for Sampling AIDS Care Settings: Our goal in sampling is to identify and recruit the kinds of organizations that might ultimately be targets for Phase IV trials and other Memorial Sloan-Kettering Cancer Center dissemination efforts. For purposes of this research, we define an AIDS Care Setting as any setting which: * Provides primary medical care, case management, day treatment, mental health or substance use treatment for people living with HIV/AIDS. * Includes two or more full-time professional staff (e.g., social workers, nurses, clergy, physicians, or psychologists) with primary responsibility for an HIV/AIDS population. * Has an active caseload of at least 50 people with HIV/AIDS. * Has been in operation as an HIV/AIDS provider for at least two years. * Has leadership and staff who are agreeable to participate in the work plan outlined in the Memorandum of Understanding (MOU). Inclusion Criteria for Providers: * Working as an administrator of HIV/AIDS care services, or a direct provider of services to HIV+ patients/clients. * Working at the agency for at least 6 months. * Working at the agency at least 20 hours a week. * Able to converse in English or Spanish. * Identified by agency leadership as staff who meet above criteria and can be approached, or want to volunteer to be interviewed. Inclusion Criteria for Sampling Patients/Clients: * Identified as HIV+ (according to identification by setting staff and/or by virtue of receiving services in a program exclusively designated for people infected with HIV/AIDS). * Receiving services at an HIV/AIDS Care Setting sampled for this study, at the time of recruitment. * Identified as a setting client for at least three months (in order to answer questions about the setting). * Age 18 or older or emancipated minors over age 16. * Able to converse in English or Spanish. * Physically and mentally capable of providing informed consent, as determined by a trained interviewer. Inclusion Criteria for Patients'/Clients' Family Members: In keeping with the definition of family as networks of mutual commitment adopted by the NIMH Family and AIDS Consortium, and in recognition of the diverse types of family situations of people affected by HIV/AIDS, we will include anyone designated as a family member by the index client/patient who meets our other inclusion criteria: * Identified by index patient client as one of the people in my family most likely to participate in programs with me at the HIV/AIDS Care Setting sampled for this study. * Age 18 or older or emancipated minors over age 16. * Able to converse in English or Spanish. * Physically and mentally capable of providing informed consent, as determined by a trained interviewer.
Countries
United States
Outcome results
None listed