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Family Access to Care Study (FACS)

2009年1月13日 更新者:Memorial Sloan Kettering Cancer Center
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?

研究概览

地位

完全的

详细说明

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.

研究类型

观察性的

注册 (预期的)

3200

联系人和位置

本节提供了进行研究的人员的详细联系信息,以及有关进行该研究的地点的信息。

学习地点

    • New York
      • New York、New York、美国、10065
        • Memorial Sloan-Kettering Cancer Center

参与标准

研究人员寻找符合特定描述的人,称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。

资格标准

适合学习的年龄

18年 及以上 (成人、年长者)

接受健康志愿者

是的

有资格学习的性别

全部

取样方法

非概率样本

研究人群

Patients/clients and their families at HIV/AIDS care centers

描述

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.

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.

学习计划

本节提供研究计划的详细信息,包括研究的设计方式和研究的衡量标准。

研究是如何设计的?

设计细节

合作者和调查者

在这里您可以找到参与这项研究的人员和组织。

调查人员

  • 首席研究员:Bruce Rapkin, PhD、Memorial Sloan Kettering Cancer Center

出版物和有用的链接

负责输入研究信息的人员自愿提供这些出版物。这些可能与研究有关。

研究记录日期

这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查,以确保它们在发布到公共网站之前符合特定的质量控制标准。

研究主要日期

学习开始

2003年2月1日

初级完成 (实际的)

2008年2月1日

研究完成 (实际的)

2008年2月1日

研究注册日期

首次提交

2007年12月21日

首先提交符合 QC 标准的

2007年12月27日

首次发布 (估计)

2007年12月28日

研究记录更新

最后更新发布 (估计)

2009年1月14日

上次提交的符合 QC 标准的更新

2009年1月13日

最后验证

2009年1月1日

更多信息

此信息直接从 clinicaltrials.gov 网站检索,没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求,请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改,我们的网站上也会自动更新.

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