title: Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India.
abstract: Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families 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. 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. Autism Res 2012, 5: 190-200. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.
authors.affiliation: Sangath, 841/1 Alto Porvorim, Goa, India.
authors.forename: Gauri
authors.initials: G
authors.lastname: Divan
authors.forename: Vivek
authors.initials: V
authors.lastname: Vajaratkar
authors.forename: Miraj U
authors.initials: MU
authors.lastname: Desai
authors.forename: Luisa
authors.initials: L
authors.lastname: Strik-Lievers
authors.forename: Vikram
authors.initials: V
authors.lastname: Patel
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis / Q000208:ethnology* / Q000523:psychology* / Q000628:therapy; D002675:Child, Preschool; D017281:Cost of Illness; D003431:Cross-Cultural Comparison; D003906:Developing Countries; D004519:Education, Special / Q000639:trends; D019317:Evidence-Based Medicine / Q000639:trends; D005260:Female; D017144:Focus Groups; D005544:Forecasting; D006297:Health Services Accessibility / Q000639:trends; D006301:Health Services Needs and Demand / Q000639:trends*; D006801:Humans; D007194:India; D007406:Interview, Psychological; D008297:Male; D016487:Parenting / Q000523:psychology; D010348:Patient Care Team / Q000639:trends; D011287:Prejudice; D012934:Social Isolation; D012944:Social Support; D055815:Young Adult