Nair Manisha, Hazarika Mythili, Kishore M Thomas, Sengupta Nabarun, Sheregar Ganesh, MacGregor Hayley, Wickenden Mary, Kaushik Neel Harit, Saikia Prarthana, Kelley Maureen, Shepperd Sasha
Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom.
Gauhati Medical College and Hospital, Guwahati, Assam, India.
PLOS Glob Public Health. 2023 Apr 14;3(4):e0000833. doi: 10.1371/journal.pgph.0000833. eCollection 2023.
Children with intellectual disability (ID) have a higher risk of long-term health problems in adulthood. India has the highest prevalence of ID of any country with 1.6 million under-five children living with the condition. Despite this, compared with other children, this neglected population is excluded from mainstream disease prevention and health promotion programmes. Our objective was to develop an evidence-based conceptual framework for a needs-based inclusive intervention to reduce the risk of communicable and non-communicable diseases among children with ID in India. From April through to July 2020 we undertook community engagement and involvement activities in ten States in India using a community-based participatory approach, guided by the bio-psycho-social model. We adapted the five steps recommended for the design and evaluation of a public participation process for the health sector. Seventy stakeholders from ten States contributed to the project: 44 parents and 26 professionals who work with people with ID. We mapped the outputs from two rounds of stakeholder consultations with evidence from systematic reviews to develop a conceptual framework that underpins an approach to develop a cross-sectoral family-centred needs-based inclusive intervention to improve health outcomes for children with ID. A working Theory of Change model delineates a pathway that reflected the priorities of the target population. We discussed the models during a third round of consultations to identify limitations, relevance of the concepts, structural and social barriers that could influence acceptability and adherence, success criteria, and integration with existing health system and service delivery. There are currently no health promotion programmes focusing on children with ID in India despite the population being at a higher risk of developing comorbid health problems. Therefore, an urgent next step is to test the conceptual model to determine acceptance and effectiveness within the context of socio-economic challenges faced by the children and their families in the country.
智力残疾（ID）儿童成年后出现长期健康问题的风险更高。印度是ID患病率最高的国家，有160万五岁以下儿童患有这种疾病。尽管如此，与其他儿童相比，这一被忽视的群体被排除在主流疾病预防和健康促进项目之外。我们的目标是制定一个基于证据的概念框架，用于开展基于需求的包容性干预措施，以降低印度ID儿童患传染病和非传染病的风险。2020年4月至7月，我们在印度十个邦采用基于社区的参与式方法开展了社区参与和介入活动，该方法以生物心理社会模型为指导。我们采用了为卫生部门设计和评估公众参与过程推荐的五个步骤。来自十个邦的70名利益相关者参与了该项目：44名家长和26名从事ID患者工作的专业人员。我们将两轮利益相关者协商的成果与系统评价的证据进行梳理，以制定一个概念框架，该框架支撑着一种方法，即制定一个跨部门、以家庭为中心、基于需求的包容性干预措施，以改善ID儿童的健康状况。一个有效的变革理论模型描绘了一条反映目标人群优先事项的路径。我们在第三轮协商中讨论了这些模型，以确定局限性、概念相关性、可能影响可接受性和依从性的结构和社会障碍、成功标准，以及与现有卫生系统和服务提供的整合情况。尽管印度ID儿童患合并健康问题的风险更高，但目前尚无针对他们的健康促进项目。因此，紧迫的下一步是测试该概念模型，以确定在该国儿童及其家庭面临的社会经济挑战背景下的可接受性和有效性。
