Developing a measure of caregiver readiness to disclose HIV serostatus: a tool to

制定衡量护理人员是否愿意披露 HIV 血清状态的衡量标准：一种工具

• 批准号: 8929269
• 负责人: Eric Green
• 金额: $ 15.6万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-30 至 2017-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8929269
• 关键词: Adherence; Adolescent; Adult; Africa South of the Sahara; Attitude to Health; Behavior; Belief; Books; Caregivers; Characteristics; Child; Child Support; Childhood; Clinic; Communities; Complex; Development; Disclosure; Exhibits; Family; Fright; Future; Goals; HIV; HIV Seropositivity; Happiness; Health; Health Personnel; Health Professional; Health Status; Human Resources; International; Intervention; Learning; Life; Measures; Modeling; Monitor; Nature; Outcome; Perception; Pharmaceutical Preparations; Predictive Value; Primary Health Care; Problem behavior; Process; Professional counselor; Provider; Province; Qualitative Research; Readiness; Research Personnel; Resources; School-Age Population; Self Efficacy; Social Functioning; Social support; Source; Staging; Structure; Testing; Therapeutic Intervention; Time; Training; Validity and Reliability; Work; Zimbabwe; antiretroviral therapy; base; behavior change; experience; improved; instrument; meetings; pediatric human immunodeficiency virus; primary care setting; psychologic; psychological distress; self esteem; social stigma; tool

DESCRIPTION (provided by applicant): An estimated 2.5 million children younger than 15 years are living with HIV, and most do not know it. Estimates of pediatric HIV disclosure rates in low-resource settings range from 14-46%, indicating a sizable number of children living with HIV-predominantly in sub-Saharan Africa-who are unaware of their HIV status. These children may begin antiretroviral therapy without learning the nature of their illness, or the purpose of th medication. Children who are not told that they have a serious health condition exhibit lower adherence to treatment and poorer health outcomes than those aware of their status. Children who know their status exhibit higher self-esteem, fewer behavior problems, and less psychological distress. After disclosure, they may also have improved social functioning, more social support, more positive health attitudes, better health outcomes, and more hope for the future. International guidance recommends that HIV-positive children of school-age should be informed of their serostatus; but disclosure is a complex and difficult process for caregivers, who may fear that their child is too young, that disclosing may cause psychological harm, or that child and family will be exposed to stigma. Healthcare providers need training and tools to provide genuinely relevant and meaningful support at this difficult time. A growing body of evidence supports interventions helping caregivers in low-resource settings to disclose serostatus (their own and the child's) to the child, supported by various resources, such as REPSSI's Talking Book. A remaining challenge, however, is that providers still need to tailor their use of these interventions to how ready a caregiver is to disclose, including their perceptio of child readiness. We believe that a missing and needed resource is a valid and easy to use tool to help lay and professional counselors to assess caregiver readiness and self-efficacy to disclose, in order to tailor disclosure support interventions. Our long-term goal is therefore to provide counselors with an accessible tool to monitor caregiver readiness and self-efficacy to disclose serostatus (caregiver's and/or child's) to school-age children in order to promote the tailoring of existing disclosure support interventions, thereby facilitating a healthy disclosure process. Our specific objective is to develop the assessment tool and test its reliability and validity in a low-resource setting. Our central hypothesis is that disclosure is a process and that caregiver readiness and self-efficacy can be measured in a valid and reliable way. The instrument will be based on the transtheoretical model of behavior change, which posits that readiness to engage in a behavior can be categorized into stages to inform therapeutic interventions. Our specific aims are to: (1) Investigate the process of HIV disclosure and the barriers and facilitators of caregivers' readiness to disclose through qualitative inquiry with adut caregivers of HIV-positive children, adults and adolescents living with HIV, and primary care clinic staff; (2) Develop an instrument to assess caregiver readiness and self-efficacy to disclose that can be used by primary care health workers to inform their use of HIV disclosure interventions.

描述（由申请人提供）：估计有250万15岁以下的儿童感染了艾滋病毒，大多数人不知道。在低资源环境中，儿科艾滋病毒披露率估计为14- 46%，这表明相当数量的儿童感染了艾滋病毒，主要是在撒哈拉以南非洲，他们不知道自己的艾滋病毒状况。这些儿童可能开始抗逆转录病毒治疗，而不了解他们的疾病性质或药物治疗的目的。没有被告知他们有严重健康状况的儿童比那些知道自己状况的儿童对治疗的依从性更低，健康结果更差。知道自己地位的孩子表现出更高的自尊，更少的行为问题，更少的心理困扰。在披露后，他们也可能改善了社会功能，更多的社会支持，更积极的健康态度，更好的健康结果，以及对未来的更多希望。国际指南建议，应告知艾滋病毒抗体阳性的学龄儿童其血清状况;但对照顾者来说，披露是一个复杂而困难的过程， 他们可能担心孩子太小，担心披露可能会造成心理伤害，或者担心孩子和家人会受到耻辱。医疗保健提供者需要培训和工具，以便在这个困难时期提供真正相关和有意义的支持。越来越多的证据支持采取干预措施，帮助资源匮乏环境中的照顾者向儿童披露（他们自己和儿童的）血清状况，并得到各种资源的支持，如REPSSI的有声读物。然而，一个仍然存在的挑战是，提供者仍然需要调整他们使用这些干预措施，以照顾者如何准备披露，包括他们对儿童准备的看法。我们认为，一个缺失的和需要的资源是一个有效的和易于使用的工具，以帮助外行和专业顾问评估照顾者的准备和自我效能披露，以量身定制披露支持干预措施。因此，我们的长期目标是为辅导员提供一个方便的工具，以监测照顾者的准备和自我效能，以披露血清状态（照顾者的和/或儿童的）学龄儿童，以促进现有的披露支持干预措施的定制，从而促进健康的披露过程。我们的具体目标是开发评估工具，并在低资源环境下测试其可靠性和有效性。我们的核心假设是，披露是一个过程， 可以有效和可靠的方式衡量照顾者的准备程度和自我效能。该工具将基于行为改变的跨理论模型，该模型假定参与行为的准备可以分为几个阶段，以告知治疗干预。我们的具体目标是：（1）通过对艾滋病毒阳性儿童、成年人和感染艾滋病毒的青少年的成年照顾者以及初级保健诊所工作人员进行定性调查，调查艾滋病毒披露的过程以及照顾者愿意披露的障碍和促进因素;（2）开发一种工具，评估照顾者愿意披露的程度和自我效能 初级保健卫生工作者可使用该信息来告知他们如何使用艾滋病毒披露干预措施。

项目成果

Caregiver self-efficacy to talk about sex predicts conversations about HIV transmission risk with perinatally infected young people in Zimbabwe.

• DOI: 10.1080/09540121.2020.1724253
• 发表时间: 2020-12
• 期刊: AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
• 影响因子: 1.7
• 作者: Langhaug, Lisa;Finnegan, A.;Schenk, K.;Puffer, E. S.;Rusakaniko, S.;Green, E. P.
• 通讯作者: Green, E. P.

Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study.

• DOI: 10.1080/08870446.2022.2041637
• 发表时间: 2023-11
• 期刊: PSYCHOLOGY & HEALTH
• 影响因子: 3.3
• 作者: Puffer, Eve S.;Finnegan, Amy;Schenk, Katie;Langhaug, Lisa;Rusakaniko, Simbarashe;Choi, Yujung;Mahaso, Simbarashe;Simmons, Ryan;Green, Eric P.
• 通讯作者: Green, Eric P.