Effectiveness and cost-effectiveness of home-based intervention to support early deaf child development in South Africa.

在南非，每年约有6000名儿童在出生后或出生后几周内失聪。对绝大多数人来说，在生命的最初几年里，没有新生儿听力筛查和获得听力技术的机会，严重损害了聋哑儿童的语言、认知和社会发展。在经济富裕的国家，情况并非如此，普遍的新生儿听力筛查加上高质量的早期干预从根本上减少了耳聋的有害影响，并对聋人的生活机会产生了积极影响。世卫组织认识到，听力障碍是全球最普遍的残疾状况，影响到约750万5岁以下儿童，其中三分之二居住在发展中国家。虽然幼儿发展是一个关键的优先事项，但由于缺乏人口层面的数据，而且几乎没有覆盖所有人口的高质量早期干预方案，阻碍了对失聪儿童的这种情况的影响。SA是潜在的不同，因为有一个大规模的捐助者资助的家庭为基础的早期干预计划，为聋哑儿童及其家庭，已被证明达到代表性的不同人群（HI HOPES）。现有1 800多名6岁以下失聪儿童的人口、听力和发育数据，使其成为撒哈拉以南非洲最大的此类数据集。然而，只有一小部分数据得到了分析和公布。在南澳大利亚州，政府为促进幼儿发展进行了大量投资，制定了国家早期学习标准和一个针对具体国家的标准化工具-早期学习成果衡量标准。迄今为止，由于缺乏有效的早期干预的证据，以及需要对《聋人康复法》进行调整，使其适用于聋人儿童，从而为今后的干预优先事项和方案提供证据，聋人儿童一直被排除在这些步骤之外。在这方面，我们项目的目标是：[A]评估HI HOPES方案的有效性和成本效益，以考虑其在整个南非和撒哈拉以南非洲其他国家推广的潜力。[B]根据南澳大利亚州政府/联合国儿童基金会的《国家出生至4岁早期学习和发展标准》，提供南澳大利亚州聋儿发展的大规模数据，作为更明确地确定这一人群发展支持需求的基础。[C]为了适应聋哑儿童使用的口语和手语，南澳大利亚州政府采用了评估幼儿发展的工具-早期学习成果衡量标准，因此，在南非，第一次有可能在入学时准确评估聋哑儿童在所有领域（不仅仅是语言）的发展进步和需求。研究问题是：答一：对出生至6岁的聋儿实施结构化的家庭早期干预方案对沟通和语言发展有何影响？哪些变量影响其有效性？答2：人口水平的早期干预服务，以促进聋人儿童的发展和家长响应照顾成本效益？B：在南非，聋儿在多大程度上符合国家早期学习发展标准？C：适合聋儿的《聋儿听力量表》改编的信度和效度特征是什么？两个专门的研究单位（一个在南非，一个在英国）正在与HI HOPES和CARM基金会/创新边缘，以实现这些目标，建立一套关于南非聋哑儿童发展的大量证据和新的监测工具，作为在缺乏循证实践的这一领域进一步制定政策和实践的基础，并为早期投资提供经济理由。聋哑儿童还有待培养。

Around 6000 children per year are born deaf or become so in the first weeks of life in South Africa (SA). For the vast majority, the absence of newborn hearing screening and access to hearing technologies in the first few years of life, results in severe impairment to deaf children's linguistic, cognitive and social development. In economically rich countries this is not the case where universal newborn hearing screening plus high quality early intervention has radically reduced the deleterious effects of deafness and positively impacted the life chances of deaf people. WHO recognises hearing impairment as the most prevalent disabling condition globally, affecting an estimated 7.5 million under the age of 5, two thirds of whom reside in the developing world. Although early childhood development is a key priority, impacting this situation for deaf children is hampered by a scarcity of population level data and very few quality early intervention programmes that reach all population demographics. SA is potentially different because there is one large-scale donor funded home based early intervention programme for deaf children and their families that has been evidenced to reach representative diverse populations (HI HOPES). Demographic, hearing and developmental data are available on over 1800 deaf children under 6 years of age making it the largest such data set in sub-Saharan Africa. However, only a small part of this data set has ever been analysed and published. In SA there has been a large government investment in boosting early childhood development with the creation national early learning standards and a country-specific standardised tool- the ELOM (Early Learning Outcome measure). Deaf children so far have been excluded from these steps forward because of the absence of evidence for effective early intervention and the need to adapt the ELOM to be valid for deaf children which in turn will provide evidence for future intervention priorities and programmes. In this context, the goals of our project are: [A] To evaluate the effectiveness and cost-effectiveness of the HI HOPES programme in order to consider its potential for upscaling throughout SA and into other countries of Sub-Saharan Africa. [B] To provide large scale data on the development of deaf children in SA aligned with the SA Government/UNICEF National Early Learning and Development Standards birth to 4 years (NELDS) as a basis for clearer identification of developmental support requirements for this population. [C] To adapt for use with deaf children, in both spoken and signed languages, the SA Government- adopted tool for the evaluation of early childhood development - the ELOM (Early Learning Outcome Measure) - so it becomes possible for the first time in South Africa accurately to evaluate deaf children's developmental progress and needs in all domains (not just language) at point of school entry. Research questions are: A1: What is the impact on communication and language development of exposure to a structured home-based early intervention programme for deaf children birth to 6 years and what variables influence its effectiveness? A2: Is a population level early intervention service to promote deaf child development and parent responsive care cost effective? B: To what extent are deaf children meeting National Early Learning Development Standards in SA? C: What are the reliability and validity characteristics of an adaptation suitable for deaf children of the ELOM? Two deaf-specific research units (one in South Africa, one in the UK) are partnering with HI HOPES and the ELOM Foundation/Innovation Edge to achieve these goals to build both a substantial set of evidence on deaf child development in South Africa and new tools for its monitoring as the basis for further policy and practice development in this field where evidence based practice is lacking and the economic case for early investment for deaf children is yet to be made.