How Far Will Our Compassion Reach for Down Syndrome?

Kurniawan Arif Maspul

doi:10.58471/health.v3i01.145

Authors

Kurniawan Arif Maspul University of the People Pasadena CA https://orcid.org/0000-0001-6394-3688

DOI:

https://doi.org/10.58471/health.v3i01.145

Keywords:

Down syndrome intersectionality, Epigenetics, Social determinants of health, Neurodiversity, Policy implementation

Abstract

A thorough strategy was taken to better understand and help people with Down syndrome. This strategy included a comprehensive literature study as well as qualitative analysis. Key themes, problems, and opportunities for assisting individuals with Down syndrome were identified through a methodical investigation of academic databases and consultation with field workers. The qualitative literature synthesis enabled a more nuanced understanding of the multifaceted challenges at hand, resulting in evidence-based policy recommendations and community participation. This multidisciplinary approach emphasizes the significance of combining empirical knowledge and lived experiences to drive effective treatments and advocacy efforts.

References

Ainscow, M. (2020). Promoting inclusion and equity in education: lessons from international experiences. Nordic Journal of Studies in Educational Policy, 6(1), 7-16.

Bandura, A., & Walters, R. H. (1977). Social learning theory (Vol. 1). Prentice Hall: Englewood cliffs.

Bell, D., Holliday, R., Ormond, M., & Mainil, T. (2015). Transnational healthcare, cross-border perspectives. Social science & medicine, 124, 284-289.

Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social problems, 36(2), 135-148.

Brannigan, M. C. (2012). Cultural fault lines in healthcare: Reflections on cultural competency. Lexington Books.

Campbell, J., Gilmore, L., & Cuskelly, M. (2003). Changing student teachers’ attitudes towards disability and inclusion. Journal of Intellectual and developmental Disability, 28(4), 369-379.

Canfield, M. A., Honein, M. A., Yuskiv, N., Xing, J., Mai, C. T., Collins, J. S., ... & Kirby, R. S. (2006). National estimates and race/ethnic‐specific variation of selected birth defects in the United States, 1999–2001. Birth Defects Research Part A: Clinical and Molecular Teratology, 76(11), 747-756.

Centers for Disease Control and Prevention. (2023, June 28). Data and Statistics on Down Syndrome. Retrieved from https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html

Clark, L., Canary, H. E., McDougle, K., Perkins, R., Tadesse, R., & Holton, A. E. (2020). Family sense-making after a Down syndrome diagnosis. Qualitative health research, 30(12), 1783-1797.

Clarkson, P. J., Coleman, R., Keates, S., & Lebbon, C. (2013). Inclusive design: Design for the whole population.

Dearing, J. W. (2008). Evolution of diffusion and dissemination theory. Journal of public health management and practice, 14(2), 99-108.

Deci, E. L., & Ryan, R. M. (2012). Self-determination theory. Handbook of theories of social psychology, 1(20), 416-436.

Dovidio, J. F., Love, A., Schellhaas, F. M., & Hewstone, M. (2017). Reducing intergroup bias through intergroup contact: Twenty years of progress and future directions. Group Processes & Intergroup Relations, 20(5), 606-620.

Duncan, J. D. (2020). Strategies to Reduce Barriers to Employment for Persons with Mobility Disabilities (Doctoral dissertation, Walden University).

Elsabbagh, M., Yusuf, A., Prasanna, S., Shikako-Thomas, K., Ruff, C. A., & Fehlings, M. G. (2014). Community engagement and knowledge translation: Progress and challenge in autism research. Autism, 18(7), 771-781.

Field, M. J., & Grigsby, J. (2002). Telemedicine and remote patient monitoring. Jama, 288(4), 423-425.

Fisch, H., Hyun, G., Golden, R., Hensle, T. W., Olsson, C. A., & Liberson, G. L. (2003). The influence of paternal age on Down syndrome. The Journal of urology, 169(6), 2275-2278.

Freeman, S. B., Bean, L. H., Allen, E. G., Tinker, S. W., Locke, A. E., Druschel, C., ... & Sherman, S. L. (2008). Ethnicity, sex, and the incidence of congenital heart defects: a report from the National Down Syndrome Project. Genetics in Medicine, 10(3), 173-180.

Hart, K. (2020). Down Syndrome Caregivers’ Support Needs: A Caregiver Perspective (Doctoral dissertation, The University of Western Ontario (Canada)).

Hendrix, J. A., Amon, A., Abbeduto, L., Agiovlasitis, S., Alsaied, T., Anderson, H. A., ... & Yi, J. S. (2020). Opportunities, barriers, and recommendations in Down syndrome research. Translational science of rare diseases, 5(3-4), 99-129.

Hernández Guerra, C. (2020). Public Service Announcements to promote integration of people with Down Syndrome: a synchronic analysis. LFE. Revista de Lenguas para Fines Específicos.

Huxham, C., & Vangen, S. (2013). Managing to collaborate: The theory and practice of collaborative advantage. Routledge.

Igarashi, H., & Saito, H. (2014). Cosmopolitanism as cultural capital: Exploring the intersection of globalization, education and stratification. Cultural Sociology, 8(3), 222-239.

Johnson, K. R. (2022). Using a Strengths–Based Approach to Improve Employment Opportunities for Individuals with Autism Spectrum Disorder. New Horizons in Adult Education and Human Resource Development, 34(1), 16-25.

Kania, J., & Kramer, M. (2013). Embracing emergence: How collective impact addresses complexity.

Korenberg, J. R., Chen, X. N., Schipper, R., Sun, Z., Gonsky, R., Gerwehr, S., ... & Disteche, C. (1994). Down syndrome phenotypes: the consequences of chromosomal imbalance. Proceedings of the National Academy of Sciences, 91(11), 4997-5001.

Lavigne, J., Sharr, C., Ozonoff, A., Prock, L. A., Baumer, N., Brasington, C., ... & Skotko, B. G. (2015). National down syndrome patient database: Insights from the development of a multi‐center registry study. American Journal of Medical Genetics Part A, 167(11), 2520-2526.

Lee, S. E. (2013). Education as a Human Right in the 21st Century. Democracy & Education, 21(1), 1.

Mannan, H., MacLachlan, M., McVeigh, J., & EquitAble Consortium. (2012). Core concepts of human rights and inclusion of vulnerable groups in the United Nations Convention on the rights of persons with disabilities. Alter, 6(3), 159-177.

Martin, L. S. (2021). Direct Support Professionals as Role Models for Adult Job Seekers with Down Syndrome (Doctoral dissertation, Grand Canyon University).

McCarron, M., McCallion, P., Fahey-McCarthy, E., Connaire, K., & Dunn-Lane, J. (2010). Supporting persons with Down syndrome and advanced dementia: Challenges and care concerns. Dementia, 9(2), 285-298.

Mitchell, D., & Sutherland, D. (2020). What really works in special and inclusive education: Using evidence-based teaching strategies. Routledge.

Ocasio-Stoutenburg, L. L. (2020). Voices of diversity in parent advocacy for children with Down syndrome: Intersectional and contextual considerations for special education and health care practitioners (Doctoral dissertation, University of Miami).

Pfeffer, J., & Salancik, G. (2015). External control of organizations—Resource dependence perspective. In Organizational behavior 2 (pp. 355-370). Routledge.

Retief, M., & Letšosa, R. (2018). Models of disability: A brief overview. HTS Teologiese Studies/Theological Studies, 74(1).

Schur, L., Colella, A., & Adya, M. (2016). Introduction to special issue on people with disabilities in the workplace. The International Journal of Human Resource Management, 27(14), 1471-1476.

Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48(4), 256-267.

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Self‐perceptions from people with Down syndrome. American Journal of Medical Genetics Part A, 155(10), 2360-2369.

Solomon, A. (2012). Far from the tree: Parents, children and the search for identity. Simon and Schuster.

Spassiani, N. A., & Friedman, C. (2014). Stigma: Barriers to culture and identity for people with intellectual disability. Inclusion, 2(4), 329-341.

Tomlinson, S. (2017). A sociology of special and inclusive education: Exploring the manufacture of inability. Taylor & Francis.

van den Driessen Mareeuw, F. A., Coppus, A. M., Delnoij, D. M., & de Vries, E. (2020). Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration. Journal of Applied Research in Intellectual Disabilities, 33(3), 496-514.

van Eijk, R. P., Beelen, A., Kruitwagen, E. T., Murray, D., Radakovic, R., Hobson, E., ... & McDermott, C. J. (2021). A road map for remote digital health technology for motor neuron disease. Journal of Medical Internet Research, 23(9), e28766.

Watkins, P. C., Tanzi, R. E., Cheng, S. V., & Gusella, J. F. (1987). Molecular genetics of human chromosome 21. Journal of medical genetics, 24(5), 257-270.

White, A. N. (2022). Caregivers and Healthcare Providers on Resources, Gaps in Care, and the Value of Down Syndrome Centers.

Winter, E., & O’Raw, P. (2010). Literature review of the principles and practices relating to inclusive education for children with special educational needs. National Council for Special Education. Trim, Northern Ireland.

Wright, D. (2011). Downs: The history of a disability. Oxford University Press, USA.