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Family Access to Care Study (FACS)

18 Years
Not Enrolling
HIV Infections

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Trial Information

Family Access to Care Study (FACS)

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.

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

- 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

- Receiving services at an HIV/AIDS Care Setting sampled for this study, at the time of

- 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.

Exclusion Criteria:

Exclusion Criteria for AIDS Care Settings: Note that two or more AIDS Care Settings may
exist within a single institution or agency. For example, hospitals may have separate
programs for adult and pediatric HIV. A community AIDS service organization may have
multiple distinct programs for different populations. Also, two settings may be closely
coordinated. In order to ensure independence among settings, we will adopt the following
exclusionary 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.

Exclusion Considerations for Patients and Families: All patients/clients of settings
identified for this study and meeting above inclusion criteria are eligible.
Patients/clients will be able to participate regardless of whether or not they nominate a
family member to participate in the study with them.

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.

Type of Study:


Study Design:

Observational Model: Case-Only, Time Perspective: Prospective

Principal Investigator

Bruce Rapkin, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

Memorial Sloan-Kettering Cancer Center


United States: Food and Drug Administration

Study ID:




Start Date:

February 2003

Completion Date:

February 2008

Related Keywords:

  • HIV Infections
  • Access to care
  • HIV Infections
  • Acquired Immunodeficiency Syndrome



Memorial Sloan-Kettering Cancer Center New York, New York  10021