The development of a best practice model to support young children with disabilities affected by environmental risk factors in West Timor, Indonesia

Abstract

Developing countries such as Indonesia face a range of environmental risk factors in relation to childhood disability. These include poverty, stigma, inadequate interaction with parents, violence and neglect, and limited access to basic services, particularly for those living outside urban areas. As such, this thesis aims to develop a best practice model that can be adapted by stakeholders working with young children with disabilities affected by these risk factors in rural Indonesia. Achieving this aim could contribute to the prevention of complications arising from early childhood disabilities and ensure that children with disabilities are well placed to participate in the broader community when they become adults. This thesis focused on West Timor, a rural and underdeveloped area in Indonesia facing significant challenges to reduce environmental risks. Study one (chapter three) comprised a scoping review of the literature, investigating interventions with an aim to support the development of young children with disabilities in Indonesia. This review identified eight studies, all of which were limited in terms of methodological quality. A key finding of this review was the use of interventions in many studies that utilized local resources while addressing broad aspects of child development. In order to broaden the knowledge about effective interventions for young children with disabilities, study two (chapter 4) comprised a systematic review of the literature to identify interventions addressing environmental risks faced by young children with disabilities in developing countries more broadly. A total of 48 studies met the inclusion criteria. A synthesis of these studies indicated that the impact of environmental risk factors on young children with disabilities might be addressed by providing disability screening services, community-based interventions, targeted services and inclusive basic services. In addition, some key barriers and facilitators were identified. Study three (chapter five) involved the qualitative examination of community perceptions about disability, environmental risk factors and available services. Responses from 23 parents and 15 local leaders including a midwife, headmaster, priest, and staff from government and non-government organisations were collected via semi-structured interviews and photovoice. The study highlighted the importance of local culture and religion in influencing the perceptions of disability and environmental risk factors in West Timor. Using an Implementation Science approach to enhance transferability of findings, results from these first three studies were then integrated into a holistic model in study four (chapter six) for addressing the needs of young children with disabilities affected by environmental risk factors in developing countries. Fifty-five local leaders, including kindergarten teachers, Sunday school teachers and community health centre workers, participated in focus groups, while 35 key participants were interviewed to collect additional data. Forty-one activities and programmes suggested by the literature reviews and community opinion formed the basis of a best practice model. These activities were also supplied with implementation strategies to help stakeholders in adapting the activities to ones which could be applied within specific organisations. In total, this thesis provides an evidence-based model which can be used by practitioners and policymakers in developing countries when working with young children with disabilities.