Stigma, Learning and Inheritance: An Ecocultural Study of Adaptation and Resource use among Families of Children with Down Syndrome in Thailand

Donald S. Persons

Abstract


Purpose: This study explored family adjustment and access to rehabilitative services for children with Down syndrome, between 0-5 years of age, in the ecoculture of Petchaburi Province, Thailand.

Methods: The study used a family systems genogram in focus group sessions at Pra Chom Klao Hospital, and made home visits to the eight participants from five families in Petchaburi Province, Thailand.  Qualitative data collection included field notes, pictures and video recordings of the 7 focus group discussions.  The analysis used rigorous procedures for constant comparison, analysis of space, content, domains and critical discourse analysis.

Results: Participating families had adjusted to emotional ruptures at home by moving out.  They were resilient in the face of health, culture, economic and educational stress. Cultural and religious resources, especially from the mother’s side of the family, contributed most during and after health crises in the first 2 years of childhood. Parents were concerned about seriously delayed development of communication skills when their children were in the 2 ½ - 5 years age group.  Parent conviction that the children would be lifelong dependants limited the possibilities for fostering independent living and occupations for these children.

Conclusion and Implications:  This study contributes to family and community-based rehabilitation strategies, stigma reduction and promotion of early childhood intervention for children with Down syndrome in Thailand.  It found moderate public stigma, obstacles in educational transitions and resource use, and limited parental understanding of children’s inheritance and future quality of life. The recommendations made are: better development of family support groups and rehabilitation counselling services, language and communication strategies, abuse training for mothers, and discussion on inheritance rights which offer insight into sibling relations and employability.  Service provision can consider reducing hospital stigma, advocacy for inclusive public and work-based play areas, increased support and professional development for community-based counsellors and special education centre extension services.

Keywords


Down syndrome; family adaptation; ecocultural CBR

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DOI: http://dx.doi.org/10.5463/dcid.v28i2.597

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