Date Presented 04/05/19
OT research is virtually nonexistent in many lower-middle-income countries. In this study, researchers partnered with a community organization to explore a culturally grounded and relevant role for OT with families of children with Down syndrome in Kyrgyzstan.
Primary Author and Speaker: Allison Burns
Contributing Authors: Parul Bakhshi, Kathy Kniepmann, Lauren Milton
PURPOSE: Individuals with developmental disabilities in the former Soviet Union face a heavy burden of systemic stigma, social exclusion, and lack of healthcare services (Hartblay & Aichieva, 2013; Phillips, 2009). In the Soviet era people with disabilities were commonly institutionalized and their mothers blamed for bearing an “invalid” child (Hartblay & Aichieva, 2013; Iarskaia-Smirnova, 1999). This stigma persists in many Central Asian former Soviet countries, where mothers of children with disabilities are often told to institutionalize their children at birth (Hartblay & Aichieva, 2013). Children with Down Syndrome (DS) and their mothers are particularly stigmatized by society because of the distinctive physical characteristics of the condition.
There is no occupational therapy (OT) literature documenting the experiences of people with DS in Kyrgyzstan, a lower-middle income former Soviet Republic in Central Asia (“WHO | Kyrgyzstan,” n.d.). Kyrgyzstan is a small country with a population of approximately 6 million people and does not recognize the profession of OT.
In this study, researchers partnered with Sunterra, an organization for parents of children with DS in Kyrgyzstan, to explore cultural perceptions of disability in Kyrgyzstan and investigate a role for occupational therapy in supporting children with DS in Bishkek.
DESIGN: This is a community-based, qualitative research study involving semi-structured interviews with mothers of children with DS who live in Bishkek and professionals who work with children with disabilities in Kyrgyzstan. A convenience sample of 9 mothers and 5 professionals was recruited through Sunterra. Inclusion criteria for the mothers group required participants to be the primary caregiver for a child with DS and speak Russian or English. Inclusion criteria for the professionals group stated that participants must work primarily with children with disabilities in Kyrgyzstan and speak Russian or English.
METHODS: Individual semi structured interviews were conducted by a Russian speaking research team member. Interview questions were structured around Bronfenbrenner’s Ecological Systems Model and included a basic occupational profile; existing social, educational, and healthcare supports and services and their usefulness; goals and concerns for their children; and their experience with cultural attitudes toward disability. Thematic analysis was conducted using Bronfenbrenner’s Ecological Systems Model and the Community Based Rehabilitation Matrix as guiding frameworks, and themes were coded using NVivo software.
RESULTS: Analysis yielded themes of occupational deprivation in both mothers and their children with DS caused by societal stigma and alleviated by engagement in Sunterra. Themes emerged reflecting a lack of professional parent support, lack of positively worded Russian language resources, lack of specialists, and a missed opportunity for early intervention.
CONCLUSION: Cultural attitudes toward Down Syndrome in Kyrgyzstan constitute an environmental barrier for mothers and children with DS. Parent driven organizations like Sunterra provide many useful resources to families, but there is a gap in specialist services. Priority areas appear to be professional parent support, practical Russian language resources, and early intervention services and training. Future research should explore the efficacy of OT interventions in these areas with this population.
IMPACT STATEMENT: Through culturally grounded qualitative research, OTs can partner with local organizations to provide meaningful services to an underserved population and look toward building capacity for OT in Kyrgyzstan.
References
Hartblay, C., & Aichieva, G. (2013). Raising Children without Complexes. In Learning to See Invisible Children: Inclusion of Children with Disabilities in Central Asia. Open Society Foundations.
Iarskaia-Smirnova, E. (1999). “What the Future Will Bring I Do Not Know”: Mothering Children with Disabilities in Russia and the Politics of Exclusion. Frontiers: A Journal of Women Studies, 20(2), 68.
Phillips, S. D. (2009). “There Are No Invalids in the USSR!” A Missing Soviet Chapter in the New Disability History. Disability Studies Quarterly, 29(3). Retrieved from http://dsq-sds.org/article/view/936
WHO | Kyrgyzstan. (n.d.). Retrieved October 24, 2017, from http://www.who.int/countries/kgz/en/
