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

描述（由申请人提供）：虽然与艾滋病毒/艾滋病有关的耻辱（H/A耻辱）影响着家庭如何管理其子女的艾滋病毒疾病的各个方面，但很少有可靠和有效的工具来衡量感染艾滋病毒的儿童及其家庭的H/A耻辱，特别是在绝大多数感染艾滋病毒的儿童生活的资源有限的环境中。我们研究小组的长期目标是为改善艾滋病毒感染儿童的慢性疾病管理提供证据。本研究的目的是开发和测试一种可靠、有效的工具来衡量hiv感染儿童的肯尼亚家庭对hiv / a耻辱的感知、制定和内化。本研究的主要终点为一套文化适应、发展适宜的H/ a病耻感测量项目的构效度，以评估家庭H/ a病耻感。这项工作将在美国与肯尼亚的长期伙伴关系——提供医疗保健的学术模式（AMPATH）框架内进行，该模式目前在肯尼亚西部的25个诊所和40个卫星诊所照顾7万多名成人和儿科艾滋病毒感染者。我们将利用这一学术伙伴关系的良好基础设施以及正在进行的集群随机对照试验平台，对评估撒哈拉以南非洲感染艾滋病毒的儿童及其家庭中艾滋病毒/艾滋病耻辱的测量项目进行系统验证。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测量家庭H/ a耻辱：目标1：确定和修改H/ a耻辱问卷项目，以获得最大的可靠性和内容效度，以测量肯尼亚有艾滋病毒感染儿童的家庭中感知、制定和内化的H/ a耻辱；目的2：评估感知、制定和内化的H/A耻辱测量的有效性，与独立构建的测量相比较，包括治疗依从性和儿童的身体、心理和社会结果；目标3：研究向儿童披露儿童的艾滋病毒状况是否会减少对有披露儿童的家庭的感知、制定或内化耻辱，而对有未披露儿童的家庭而言。研究的第一阶段将通过对现有数据的文献回顾、通过焦点小组的患者输入和对项目进行修改的认知访谈，确定、评估和改进问卷项目，以衡量肯尼亚家庭中的H/A耻辱。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艾滋病毒/艾滋病耻辱测量项目的可靠性和有效性，这些儿童正在进行一项随机对照试验，评估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测量，包括药物依从性以及身体、心理和社会结果，将被用作一组不同的结构，用于与H/ a病耻感测量项目进行比较和验证。我们假设基于文化特异性定性工作的H/A耻辱感测量项目将产生可靠和有效的hiv感染儿童家庭H/A耻辱感测量。

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.