Parenting Children with Intellectual and Developmental Disabilities in Asian Indian Families in the United States

Abstract

Asian Indian immigrant parents of children with intellectual and developmental disabilities (IDD) have unique experiences and challenges grounded within their cultural contexts and migration to United States. This study sought to describe these experiences using qualitative method. Open-ended interviews were individually conducted with 15 Asian Indian parents (8 mothers, 7 fathers) whose children were diagnosed with Down Syndrome, Autistic Disorder, or Pervasive Developmental DisorderNot Otherwise Specified. Qualitative analysis generated 16 themes that were grouped into five domains: Cultural explanations, community response, and migration; impact on the self and family; sources of stress and support; a unique parenting approach; and hopes and fears for the future. In particular, parents described their local community's initial struggles with acceptance of IDD grounded within religious explanations of the disability. Similar to parents of children with IDD from other cultural groups, these parents described family support, broader social awareness and acceptance, and access to resources as sources of support and the lack of these factors as contributing to stress. A unique parenting approach emerged in reference to the child with IDD that included adjusting academic aspirations for the child, taking a practical, ''1 day at a time'' approach, and efforts to pass on cultural heritage. Parents voiced concerns about the future care of their child when they would not be around, as well as their hopes. These findings suggest the importance of attending to cultural meanings and local contexts when understanding parenting experiences.

Challenges, Coping, and Resilience Among Immigrant Parents Caring for a Child With a Disability: An Integrative Review

“…Immigrant families also used social support services such as schools, social workers, and interpreting services to target their specific problems (Croot et al, ). Asian Indian immigrant parents in the United States stated that when they were able to access resources in the school or in the community, they felt less lonely and their needs were being met (Zechella & Raval, ).…”

“…The findings revealed that immigrant parents who received social and emotional support from their family seemed to be resilient. Other parents who received instrumental support, such as being employed in a professional job, speaking English fluently, earning a high income, having a driver’s license, or being more educated, appeared more resilient (Heer et al, ; Su, ; Zechella & Raval, ). A combination of two or more of these resources led to more resilient parents (Su, ).…”

The experiences of minority ethnic heritage parents having a child with SEND: a systematic literature review

“…Some mothers reported that their husbands did not understand the disability or wish to access services as they had been raised in a different culture overseas and had different values and beliefs about disability. However, Zechella and Raval () found that some couples' relationships were strengthened as a result of raising a child with a disability because they put their small differences aside and the responsibility became the focus.…”

“…The parents were aware that not only does the child get ‘labelled but the whole family is described for life as “the family with the disabled child, man, or woman”’. For this reason some mothers were advised by community members to keep their child's disability a secret and ‘not bring him out as he's not supposed to be seen’ (Zechella & Raval, ), and were told that disclosing a diagnosis could jeopardise the child's future chance of getting married. One mother described how she rejected the diagnosis and treated her son ‘like a normal child’ but kept him hidden from the community (McLeod, ).…”

“…The present review highlights the following as conducive to culturally competent services: valuing diversity, avoiding culture‐blindness and stereotyping, recognising diversity within cultures and communities, understanding the role of the extended family and religion, reducing power dynamics, employing minority ethnic staff, availability of bilingual staff/interpreters, and a genuine willingness to continue learning about different cultures (Cross, ; McPhatter, ; Weaver, ; Shah, ; McLeod, ; Mahotiere, ; SAMHSA, ). The findings of this review do not apply to all members of each culture, but are drawn together as a way of better understanding some behaviours and perspectives of individuals who share similar background (Weaver, ; Shah, ; Tarian, ; Nair, ; Zechella & Raval, ; Habib et al, ). As well as individual‐level approaches to cultural competence, arguably there need to be service‐level changes, involving families and communities, to develop continued self‐assessment, staff training, appropriate translation services, and recruitment from minority ethnic groups (Cross, ; Shah, ; SAMHSA, ).…”