Volume 07 Issue 11 November 2024
1Eleptico, Jonathan M., 2Gil, Tyrone Jr. O., 3Gonzaga, Vince Cristian L.
1,2,3College of Education. Leyte Normal University, Tacloban City, 6500, Philippines
DOI : https://doi.org/10.47191/ijsshr/v7-i11-47Google Scholar Download Pdf
ABSTRACT
The experiences of family members of children with Trisomy 21 revealed the stigmatization these families face. This stigma arises from a combination of societal and cultural factors, mainly driven by people's tendency to judge based on physical appearance. Participants pointed out that the focus on facial features, where visible differences trigger prejudice, often leads to hurtful name-calling and exclusion. Additionally, a lack of awareness about Trisomy 21 in communities significantly affects families. Limited knowledge creates misunderstandings resulting in judgment and emotional distress. Disparities in education add another layer to the issue, as educational gaps foster unconscious biases and negative stereotypes. The data show that people's attitudes contribute to ongoing stigma. The uniqueness of this study is that it explored the pervasive stigma experienced by family members and extended family members of children with Trisomy 21, commonly known as Down syndrome. Through qualitative interviews, the researchers were able to investigate the stigmatization and prejudices faced by these families. The findings revealed that stigma manifests in various forms, including social exclusion, discrimination, and emotional distress, significantly impacting the psychological well-being and social integration of both the children and their family members. Through these experiences that were highlighted, it helped to create the themes. By examining these experiences, the study recommends for urgent need for raising awareness, inclusive policies, and supportive interventions to mitigate stigma and promote a more accepting and understanding society. Future research on the stigma faced by family members of children with Trisomy 21 may also delve deeper into the different cultural and regional contexts that influence the stigmatization that these families encounter. Future studies may examine how effective different laws, anti-stigma programs, and awareness programs are in order to promote a more inclusive and welcoming environment for these families. The data that were gathered highlights the need for raising awareness and the government giving more focus to these people to foster empathy and reduce the negative perceptions associated with Trisomy 21.
KEYWORDS:Stigmatization, Trisomy 21 (Down Syndrome), Prejudice, Discrimination, Stereotype
REFERENCES1) Ablon, J. (2002). The nature of stigma and medical conditions. Epilepsy & Behavior, 3(6), 2–9.
2) Ahlborg, H., & Bergbom, F. (2018). Effects of an anti-stigma campaign on knowledge and attitudes about people with intellectual disability. Scandinavian Journal of Psychology, 59(2), 142-150.
3) Ali, A., Scior, K., Ratti, V., Strydom, A., Hassiotis, A., & King, M. (2012). Stigma experienced by family members of people with intellectual and developmental disabilities: Multidimensional construct. BJPsych Open, 8(3), e1-11.
https://doi.org/10.1192/bjo.2020.19
4) Ancheta, M. L. (2006). The Filipino family: A sociological perspective. C & E Pub. Co.
5) Andersen, et al. (2022, April 23). On the definition of stigma. Retrieved from https://onlinelibrary.wiley.com/doi/full/10.1111/jep.13684#citedby-section
6) Baird, P., Henderson, J., & Clegg, J. (2021). Down’s syndrome in the 21st century: How much has our understanding changed? Journal of Intellectual and Developmental Disability, 46(2), 143-155.
7) Bundschuh, E. W., Schwartz, A. N., & Wells, K. T. (2001). Knowledge and attitudes of college students toward people with disabilities. Rehabilitation Education, 15(2), 139-149.
8) Cambridge Dictionary. (n.d.) Discrimination. Retrieved from https://dictionary.cambridge.org/us/dictionary/english/discrimination
9) Centers for Disease Control and Prevention. (2021, March 19). Chromosomal Abnormalities: Trisomy 21 (Down Syndrome). Retrieved from https://www.cdc.gov/ncbddd/birthdefects/surveillancemanual/quick- reference-handbook/ trisomy-21-down-syndrome.html
10) Collins Dictionary. (n.d.) Prejudice. Retrieved from https://www.collinsdictionary.com/dictionary/english/prejudice
11) Corrigan, P., & Watson, A. C. (2007). [The stigma paradox: How stigma and discrimination can enhance resilience]. American Psychologist, 62(4), 214-221.
12) Cruz, M. (2019). Sibling perceptions of children with Down syndrome in Filipino families. Journal of Developmental and Physical Disabilities.
13) Cuskelly, M., & Gunn, P. (2003). Brothers and sisters of children with Down syndrome: A review of the literature. Journal of Intellectual and Developmental Disability, 28(1), 1-22.
14) Elangovan, N., & Sundaravel, E. (2021, January 1). Method of preparing a document for survey instrument validation by experts. MethodsX. Retrieved from https://doi.org/10.1016/j.mex.2021.101326
15) Enea-Drapeau, C., Carlier, M., & Huguet, P. (2012). Tracking subtle stereotypes of children with trisomy 21: From facial-feature-based to implicit stereotyping. PLoS One, 7(4), e34369. https://doi.org/10.1371/journal.pone.0034369
16) Fiske, A. P. (2009). Cultural entitles and social mobility: Does perceived legitimacy matter? Journal of Personality and Social Psychology, 96(7), 804-820.
17) Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002, December 1). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry. Retrieved from https://doi.org/10.1046/j.1440-1614.2002.01100.x
18) Gita-Carlos, R. (2023, February 4). PCO pushes for inclusion of people with Down syndrome. Retrieved from https://www.pna.gov.ph/articles/1194405
19) Gill, K. R. (2023, November 28). Retrieved from https://www.healthline.com/health/down-syndrome
20) Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall. Retrieved from https://scirp.org/reference/referencespapers?referenceid=2205344
21) Hobbs, G., Gibson, M., & Lynch, M. (2010). Siblings of children with disabilities: A critical review of the literature. Journal of Intellectual and Developmental Disability, 35(2), 117-134.
22) Isaksson, A., Corker, E., Cotney, J., Hamilton, S., Pinfold, V., Rose, D., Rüsch, N., Henderson, C., Thornicroft, G., & Evans-Lacko, S. (2017). Coping with stigma and discrimination: Evidence from mental health service users in England. Epidemiology and Psychiatric Sciences, 27(6), 577–588.
23) Khan, S. R., Benda, T., & Stagnaro, M. N. (2012). Stereotyping from the perspective of perceivers and targets. Online Readings in Psychology and Culture, 5(1). Retrieved from https://doi.org/10.9707/2307-0919.1043
24) Lee, S., Kim, Y., & Kim, H. J. (2020). Stigma of mental illness and cultural factors in Pacific Rim region: A systematic review. BMC Psychiatry, 20(1), 1-9.
25) Link, B. G., & Phelan, J. C. (2001). Stigma and its public health implications. Annual Review of Sociology, 27(1), 363-386.
26) Martinez, P., Keyes, M., & Feldman, J. (2010). Family resilience in mothers of young children with Down syndrome. Journal of Pediatric Psychology, 35(2), 220-230.
27) Masanda, A. B. (2019). Raising kids with Down syndrome: Experiences of selected parents in the Philippines. Retrieved from
https://www.academia.edu/39531182/Raising_Kids_with_Down
_Syndrome_Experiences_of_Selected_Parents_in_the_Philippines
28) McCombes, S. (2023, November 20). What is a case study? | Definition, examples & methods. Scribbr. Retrieved from https://www.scribbr.com/methodology/case-study/?fbclid=IwAR0Jm1uslkCtm3g6-KndLzGTD_ML3zNHaPa30yiaTXf0v8kKQWYp6LM481k
29) Merriam-Webster. (n.d.). Family. In Merriam-Webster.com dictionary. Retrieved February 15, 2024, from https://www.merriam-webster.com/dictionary/family
30) National Library of Medicine. (2023, August 8). Down syndrome. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK526016/#_article-20693_s2_
31) Nikolopoulou, K. (2022, August 11). What is purposive sampling? | Definition & examples. Retrieved from Scribbr: https://www.scribbr.com/methodology/purposive-sampling/#:~:text=Purposive%20sampling%20refers%20to%20a,on% 20purpose%E2%80%9D%20in%20purposive%20sampling
32) Pettersson, K., & McConkey, R. (2018). Family functioning and psychosocial well-being in families with a child with Down syndrome. Down Syndrome Research and Practice, 2(2), 182-190.
33) Pusapati, K. V. (2019). Study of dielectric and ferroelectric properties of electrospun polymer-ceramic composites (Undergraduate thesis). University of Arizona. https://repository.arizona.edu/bitstream/handle/10150/633445/SP_2019_Pusapati_Thesis.pdf?sequence=1&isAllowed=y
34) Santos, A., & Reyes, J. (2020). Parental experiences of raising children with Down syndrome in the Philippines. Asia Pacific Disability Rehabilitation Journal.
35) Shakespeare, T. (2006). Disability rights and the transformation of welfare. Policy & Politics, 34(4), 561-579.
36) Soc Psychol Q. Author manuscript; available in PMC 2014 Dec 1. Published in final edited form as:
Soc Psychol Q. 2012 Dec; 75(4): 310–333. doi: 10.1177/0190272512459968. Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4248597/#:~:text=Link%20and%20Phelan%20
(2001)%20describe,group%20to%20successfully%20devalue%20another.
37) Taber, K. S. (2020, August 22). Using pseudonyms in reporting research. *Science-Education-Research –
38) `Tuncer, E. (2023). Survey Translation: Key to Global Research Success. Retrieved from https://www.motaword.com/blog/the-importance-of-survey-translation-in-global- research?fbclid=IwAR3rwTXJhxvaNVdSBmi0VyZlgIPhoQJ7eMSxBWqhajPu4 aCWgZI2xTqqBGg#:~:text=Without%20it%2C%20we%20risk%20misinterpret ing,comprehensive%20awareness%20of%20cultural%20nuances
39) Turnbull, A., Goossens, J., & Clough, P. (2020). Down syndrome and inclusion: Educational settings. Routledge.
40) University of Utah. (2017, December 7). What are syndromes. Retrieved from https://healthcare.utah.edu/the-scope/health-library/all/2017/12/what-are- syndromes
41) Yin, R. (2009). Case Study Research: Design and Methods. Retrieved from https://books.google.com.ph/books?id=FzawIAdilHkC&printsec=frontcover#v= onepage&q&f=false
