Validating an HIV-Related Stigma Measure for Families with HIV-Infected Children

描述(由申请人提供)：虽然艾滋病毒/艾滋病相关污名(H/A污名)塑造了家庭如何管理其子女艾滋病毒疾病的方方面面，但几乎没有可靠和有效的工具来衡量艾滋病毒感染儿童及其家庭的H/A污名，特别是在绝大多数艾滋病毒感染儿童生活的资源有限的环境中。我们研究团队的长期目标是为改善艾滋病毒感染儿童的慢性病管理提供证据。这项研究的目的是开发和测试一种可靠、有效的工具来测量感染艾滋病毒儿童的肯尼亚家庭感知、实施和内化的H/A耻辱。主要终点将是一套文化适应的、发育上合适的H/A耻辱测量项目的结构效度，以评估H/A耻辱家族。这项工作将在美国-肯尼亚长期合作伙伴关系-学术模式提供获得医疗保健(AMPATH)-范围内进行，该模式目前在肯尼亚西部的25家诊所和40家卫星诊所为超过7万名成人和儿童艾滋病毒感染患者提供护理。我们将利用这一学术伙伴关系的优秀基础设施以及正在进行的整群随机对照试验的平台，为评估撒哈拉以南非洲艾滋病毒感染儿童及其家庭的H/A污名的测量项目提供系统的验证。我们将开发和测试一种可靠、有效的工具，通过追求以下具体目标来衡量家庭H/A污名：目标1：确定和修改H/A污名问卷项目，以获得最大的可靠性和内容效度，以衡量肯尼亚感染艾滋病毒的家庭中感知的、制定的和内化的H/A污名；目标2：评估感知、制定和内化的H/A污名措施与独立的构造性措施的有效性，包括坚持治疗和儿童的身体、心理和社会结果；目的3：研究与未公开子女的家庭相比，向儿童披露儿童的艾滋病毒状况是否减少了已披露子女的家庭所感受到的、制定的或内在化的污名。研究的第一阶段将确定、评估和改进问卷项目，以通过对现有数据的文献审查、通过焦点小组提供的患者意见和对项目修改的认知访谈来衡量肯尼亚家庭中的H/A污名。研究的第二阶段将在240名感染艾滋病毒的儿童及其照顾者中测试H/A污名测量项目的可靠性和有效性，这些儿童和他们的照顾者正在进行一项随机对照试验，评估一项支持向儿童披露艾滋病毒状况的干预措施。为正在进行的试验收集的结果衡量标准，包括服药依从性以及身体、心理和社会结果，将被用作一套不同的结构，用于与H/A耻辱衡量项目进行比较和验证。我们假设，基于特定培养质化工作的H/A污名测量项目将为有HIV感染儿童的家庭产生可靠和有效的H/A污名测量。

DESCRIPTION (provided by applicant): While HIV/AIDS-related stigma (H/A stigma) shapes every aspect of how families manage their children's HIV disease, there are few reliable and validated instruments to measure H/A stigma for HIV-infected children and their families, especially in resource-limited settings where the vast majority of HIV-infected children live. The long-term goal of our research team is to provide evidence to improve the chronic disease management of HIV-infected children. The purpose of this study is to develop and test a reliable, valid instrument to measure H/A stigma as perceived, enacted, and internalized by Kenyan families with HIV-infected children. The primary endpoint will be construct validity for a set of culturally adapted, developmentally appropriate H/A stigma measurement items to assess family H/A stigma. This work will be conducted within a long-standing US-Kenya partnership, the Academic Model Providing Access to Healthcare (AMPATH), which currently cares for over 70,000 adult and pediatric HIV-infected patients at 25 clinics and 40 satellite clinics in western Kenya. We will utilize the excellent infrastructure of this academic partnership as well as the platform of an ongoing cluster- randomized controlled trial to provide a systematic validation of measurement items for assessing H/A stigma among HIV-infected children and their families in sub-Saharan Africa. We will develop and test a reliable, valid instrument to measure family H/A stigma by pursuing these specific aims: Aim 1: Identify and modify H/A stigma questionnaire items for maximum reliability and content validity to measure perceived, enacted and internalized H/A stigma among Kenyan families with HIV-infected children; Aim 2: Assess the validity of the measures of perceived, enacted and internalized H/A stigma compared to independent construct measures including adherence to therapy and children's physical, psychological and social outcomes; Aim 3: Examine whether disclosure of a child's HIV status to the child reduces perceived, enacted, or internalized stigma for families with disclosed children compared to families with non-disclosed children. Phase One of the study will identify, assess and refine questionnaire items to measure H/A stigma among Kenyan families through a literature review of existing data, patient input through focus groups and cognitive interviewing for item modification. Phase Two of the study will test the reliability and validity of the H/A stigma measurement items among 240 HIV-infected children and their caregivers who are being followed within an ongoing cluster- randomized, controlled trial evaluating an intervention to support disclosure of HIV status to children. Outcome measures being collected for the ongoing trial, including medication adherence, and physical, psychological and social outcomes, will be utilized as a diverse set of constructs for comparison and validation with H/A stigma measurement items. We hypothesize that H/A stigma measurement items based on culture-specific qualitative work will yield reliable and valid measures of H/A stigma for families with HIV-infected children.