Family Access to Care Study (FACS)

NCT ID: NCT00582218

Last Updated: 2009-01-14

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 3200 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2003-02-28
• Study Completion Date: 2008-02-29

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.

Conditions

HIV Infections

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: PROSPECTIVE

Eligibility Criteria

Inclusion Criteria

• 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).

• 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.

• 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.

• 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.

Patients/clients will not be able to participate if they:

• Are not HIV+.
• Have been receiving services at the HIV/AIDS care setting for less than three months.
• Are under the age of 18, or are not emancipated minors.
• Are not able to converse in either English or Spanish.
• Are physically and mentally incapable of providing informed consent, as determined by a trained interviewer.

Exclusion Criteria

• Only one AIDS Care Setting administered or governed by a given institution will be included in the study. If one setting from a particular institution agrees to participate, other settings from that institution will be ineligible.
• Multi-site programs or programs of a single agency that are working together in a coordinated fashion for purposes of this study will be treated as a single "AIDS Care Setting." If we discover that programs are affiliated, we will remove them from the list. In general, we will attempt to carry out this project at the site initially identified, although involvement of multiple sites may be necessary.

Exclusion Consideration for Providers: All providers who are identified by the agency leadership will be approached. However, a provider will not be able to participate if he/she has already participated in the study as a provider from another agency.

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Memorial Sloan Kettering Cancer Center

OTHER

Sponsor Role: lead

Responsible Party

Memorial Sloan-Kettering Cancer Center

Principal Investigators

Bruce Rapkin, PhD

Role: PRINCIPAL_INVESTIGATOR

Memorial Sloan Kettering Cancer Center

Locations

Memorial Sloan-Kettering Cancer Center

New York, New York, United States

Countries

United States

Related Links

http://www.mskcc.org

Memorial Sloan-Kettering Cancer Center

Other Identifiers

03-008

Identifier Type: -

Identifier Source: org_study_id