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Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India

Thursday, 2 May 2013: 14:00-18:00
Banquet Hall (Kursaal Centre)
G. Divan1, V. P. Vajaratkar2, M. U. Desai3, L. Strik-Lievers4 and V. Patel5, (1)Sangath, Goa, India, (2)ARTI and PASS project, Sangath, Goa, Panjim, Goa, India, (3)Yale University, New Haven, CT, (4)Neuropsichiatria Infantile Ospedale San Paolo, Università degli Studi di Milano, Milano, Italy, (5)London School of Hygiene and Tropical Medicine, London, United Kingdom
Background: Autism Spectrum Disorders (ASD) is being increasingly recognized in developing countries like India. There are a number of attempts to understand the experience of parenting a child with ASD, from around the world (Altiere et al, 2009, Gray, 2006, Luong et al, 2009, Shaked, 2005) However, little is known about the experiences of parents raising a child with ASD in the Indian context. With a population of over a billion, India has over 2 million children with ASD and the experience of parents can help inform policy as well as practice.

Objectives: This study aimed to describe the experiences of parents raising a child with ASD in the Western state of Goa, in India, with a view to understanding the challenges families face and their unmet needs during this parenting journey.

Methods: Twenty in-depth interviews and nine focus group discussions were carried out 98 participants, which included twelve parents of children with ASD and key community stakeholders such as special educators, teachers and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD.

Results: Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD.

Conclusions: This qualitative study observed a range of adverse impacts associated with raising a child with ASD in Goa, India. Most parents undertook diverse strategies to address the challenges they faced, in the context of a health and social welfare system which had very limited awareness of, and services for, ASD.

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