A Journey of Trials and Hopes of Individuals with Orofacial Clefts
Edleigh Ian J. Ignacio | Bea Isabel Logmao | Karla Mae S. Revaño | Sherland Grace S. Yumul | Darwin F. Ignacio
Discipline: psychology (non-specific)
Abstract:
Orofacial clefts, including conditions such as cleft lip and palate, represent much more than mere congenital conditions—they signify a profound journey characterized by visible and invisible challenges that extend beyond medical treatment into psychological and social realms. This study explores the lived experiences of individuals with orofacial clefts, highlighting their past and present struggles and aspirations. A review of existing literature reveals the multifaceted challenges these individuals face, including persistent stigma, discrimination, and issues related to self-esteem, all exacerbated by financial burdens and social isolation. To address these matters, this research employs a qualitative-narrative design, utilizing semi-structured interviews with three married female participants aged 31 to 60 from the SOCCSKSARGEN region, specifically General Santos City and Alabel in Sarangani, selected through purposive sampling. The data were analyzed using Bingham and Witkowsky’s (2022) five-phase approach, combining inductive and deductive methods to derive meaningful insights. The findings highlight the urgent need for supportive environments and inclusive policies to empower individuals, enhance well-being, and provide comprehensive support for their emotional, social, and psychological needs.
References:
- Adeyemo, W., James, O., & Butali, A. (2016). Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities. Annals of Maxillofacial Surgery, 6(2), 195. https://doi.org/10.4103/2231-0746.200336
- Akpasa, I. O., Yemitan, T. A., Ogunbanjo, B. O., & Oyapero, A. (2022). Impact of severity of malocclusion and self-perceived smile and dental aesthetics on self-esteem among adolescents. Journal of the World Federation of Orthodontists, 11(4), 120–124. https://doi.org/10.1016/j.ejwf.2022.05.001
- Ardouin, K., Hotton, M., & Stock, N. M. (2021). Interpersonal relationship experiences in adults born with cleft lip and/or palate: A whole of Life survey in the United Kingdom. The Cleft Palate-Craniofacial Journal, 58(11), 1412–1421. https://doi.org/10.1177/1055665620987109
- Arias-Urueña, L., Chandler, A., & Harden, J. (2023). Cleft lip and/or palate: Children’s experiences of stigma in Colombia. The Cleft Palate-Craniofacial Journal, 61(10), 1713–1720. https://doi.org/10.1177/10556656231183386
- Atik, E., Önde, M. M., Domnori, S., Tutar, S., & Yiğit, O. C. (2020). A comparison of self-esteem and social appearance anxiety levels of individuals with different types of malocclusions. Acta Odontologica Scandinavica, 79(2), 89–95. https://doi.org/10.1080/00016357.2020.1788720
- Berk, N. W., Cooper, M. E., Liu, Y., & Marazita, M. L. (2001). Social Anxiety in Chinese Adults with Oral-Facial Clefts. The Cleft Palate Craniofacial Journal, 38(2), 126–133. https://doi.org/10.1597/15451569_2001_038_0126_saicaw_2.0.co_2
- Bingham A. J., Witkowsky P. (2022). Deductive and inductive approaches to qualitative
- Broutin, A., Blanchet, I., Canceill, T., & Noirrit‐Esclassan, E. (2023). Association between Dentofacial Features and Bullying from Childhood to Adulthood: A Systematic Review. Children (Basel), 10(6), 934. https://doi.org/10.3390/children10060934
- Brown, J., Sorrell, J. H., McClaren, J., & Creswell, J. W. (2021). Waiting for a liver transplant. Qualitative Health Research, 16(1), 119–136. https://doi.org/10.1177/1049732305284011
- Butina, M. (2015). A narrative approach to qualitative inquiry. Clinical Laboratory
- Cohen, D., & Crabtree, B. (2006). “Qualitative Research Guidelines Project.” Robert Wood Johnson Foundation. http://www.qualres.org/HomeSemi-3629.html
- Collett, B. R., & Speltz, M. L. (2006). Social-Emotional development of infants and young children with orofacial clefts. Infants & Young Children, 19(4), 262–291. https://doi.org/10.1097/00001163-200610000-00002
- Crerand, C. E., Rumsey, N., Kazak, A. E., Clarke, A., Rausch, J. R., & Sarwer, D. B. (2020). Sex differences in perceived stigmatization, body image disturbance, and satisfaction with facial appearance and speech among adolescents with craniofacial conditions. Body Image, 32, 190–198. https://doi.org/10.1016/j.bodyim.2020.01.005
- DeMarco, C. (2021). LibGuides: Section 2: Qualitative Narrative Inquiry Research.
- Erikson, E. H. (1963). Childhood and society 2nd ed. Erikson-New York: Norton.
- Etikan, I., Musa, S., & Alkassim, R. (2016). Comparison of Convenience Sampling and Purposive Sampling. American Journal of Theoretical and Applied Statistics, 5(1)(2326–8999), 2326–9006. https://doi.org/10.11648/j.ajtas.20160501.11
- Florián-Vargas, K., Carruitero, M. J., Bernabé, E., & Flores-Mir, C. (2016). Self-esteem in adolescents with Angle Class I, II and III malocclusion in a Peruvian sample. Dental Press Journal of Orthodontics, 21(2), 59–64. https://doi.org/10.1590/2177-6709.21.2.059-064.oar
- Friedman, C. (2019). Intimate relationships of people with disabilities. Inclusion, 7(1), 41–56. https://doi.org/10.1352/2326-6988-7.1.41
- George, T. (2023). Semi-Structured Interview | Definition, Guide & Examples. Scribbr. https://www.scribbr.com/methodology/semi-structured-interview/
- Gifalli, M., Antonio, C. T., Da Silva, V. a. P., Capone, F. A., Prado, P. C., & Trettene, A. D. S. (2024). Adolescents with orofacial clefts: understanding their experiences. Revista Paulista De Pediatria, 42. https://doi.org/10.1590/1984-0462/2024/42/2023131
- Hamlet, C., & Harcourt, D. (2015). Older Adults’ Experiences of Living with Cleft Lip and Palate: A Qualitative Study Exploring Aging and Appearance. The Cleft Palate Craniofacial Journal, 52(2), 32–40. https://doi.org/10.1597/13-308
- Hoft, J. (2021). Anonymity and confidentiality. The Encyclopedia of Research Methods in Criminology and Criminal Justice, 223–227. https://doi.org/10.1002/9781119111931.ch41
- In, J. (2017). Introduction of a pilot study. Korean Journal of Anesthesiology, 70(6), 601. https://doi.org/10.4097/kjae.2017.70.6.601
- Jain, N. (2024). What is Qualitative Research Design? Definition, Types, Methods and Best Practices. IdeaScale. https://ideascale.com/blog/qualitative-research-design/
- Jensen, E. D., Poirier, B. F., Oliver, K. J., Roberts, R., Anderson, P. J., & Jamieson, L. M. (2022). Childhood Experiences and Perspectives of Individuals with Orofacial clefts: A Qualitative Systematic review. The Cleft Palate-Craniofacial Journal, 60(7), 888–899. https://doi.org/10.1177/10556656221084542
- Josephson, A., & Smale, M. (2020). What Do you Mean by “Informed Consent”? Ethics in Economic Development Research†. Applied Economic Perspectives and Policy, 43(4), 1305–1329. https://doi.org/10.1002/aepp.13112
- Khan, M. I., Cs, P., & Srinath, N. (2020). Genetic factors in nonsyndromic orofacial clefts. Global Medical Genetics, 07(04), 101–108. https://doi.org/10.1055/s-0041-1722951
- Kini, U. (2023). Genetics and orofacial clefts: a clinical perspective. British Dental Journal, 234(12), 947–952. https://doi.org/10.1038/s41415-023-5994-3
- Lestari, R., & Fajar, M. (2020). Gratitude, Self-Esteem and Optimism in People with Physical Disabilities. Prizren Social Science Journal, 4(2), 14–21. https://doi.org/10.32936/pssj.v4i2.150
- Loewenstein, J., Sutton, E., Guidotti, R., Shapiro, K., Ball, K., McLean, D., & Biesecker, B. (2008). The art of coping with a craniofacial difference: Helping others through “Positive Exposure.” American Journal of Medical Genetics Part A, 146A(12), 1547–1557. https://doi.org/10.1002/ajmg.a.32344
- Lorot-Marchand, A., Guerreschi, P., Pellerin, P., Martinot, V., Gbaguidi, C., Neiva, C., Devauchelle, B., Frochisse, C., Poli-Merol, M., & Francois-Fiquet, C. (2015). Frequency and socio-psychological impact of taunting in school-age patients with cleft lip-palate surgical repair. International Journal of Pediatric Otorhinolaryngology, 79(7), 1041–1048. https://doi.org/10.1016/j.ijporl.2015.04.024
- Morningstar, M. E., Turnbull, A. P., & Turnbull, H. R. (1995). What Do Students with Disabilities Tell Us about the Importance of Family Involvement in the Transition from School to Adult Life? Exceptional Children, 62(3), 249–260. https://doi.org/10.1177/001440299606200306
- Oka, A., Tanikawa, C., Ohara, H., & Yamashiro, T. (2022). Relationship Between Stigma Experience and Self-Perception Related to Facial Appearance in Young Japanese Patients with Cleft lip and/or Palate. The Cleft Palate-Craniofacial Journal, 60(12), 1546–1555. https://doi.org/10.1177/10556656221114581
- Oliver, M. (2013). The social model of disability: thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773
- Phalke, N., & Goldman, J. J. (2023). Cleft Palate. StatPearls - NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/books/NBK563128/
- Phillips, B. N., Fleming, A. R., Bean, B., Umucu, E., Lee, B., Roundtree, S. M., & Grenawalt, T. A. (2022). Relations among gratitude, adaptation to disability, and flourishing among adults with disabilities: A longitudinal mediation model. Rehabilitation Psychology, 67(4), 546–555. https://doi.org/10.1037/rep0000448
- Pittsburgh Orofacial Cleft Studies | School of Dental Medicine. (n.d.). https://www.dental.pitt.edu/research/ccdg/participate-research/pittsburgh-orofacial-cleft-studies
- Ribeiro-Neto, C. A., Ferreira, G., Monnazzi, G. C. B., Gabrielli, M. F. R., & Monnazzi, M. S. (2018). Dentofacial deformities and the quality of life of patients with these conditions: a comparative study. Oral Surgery Oral Medicine Oral Pathology and Oral Radiology, 126(6), 457–462. https://doi.org/10.1016/j.oooo.2018.08.013
- Sablada, J. R. P., & Amparado, M. P. (2020). Living Changed Lives: Experiences of Individuals After Oral Reconstructive Surgery. https://doi.org/10.31219/osf.io/xep6a
- Salkind, N. (2010). Encyclopedia of Research Design. In SAGE Publications, Inc. eBooks. https://doi.org/10.4135/9781412961288
- Stepp, W. H., Stein, E., Canfarotta, M. W., Wood, J. S., Vandoros, E., Stein, M., Daniel, R., Shockley, W., Clark, J. M., & Drake, A. F. (2022). Body dysmorphic Disorder in adult patients with an orofacial cleft: an unseen psychological burden. The Laryngoscope, 133(4), 818–821. https://doi.org/10.1002/lary.30378
- Stock, N. M., Feragen, K. B., & Rumsey, N. (2015). “It Doesn’t All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born with Cleft Lip and/or Palate. The Cleft Palate Craniofacial Journal, 52(5), 543–554. https://doi.org/10.1597/14-178
- Stojkow, M., & Żuchowska-Skiba, D. (2018). Family networks of people with disabilities and their role in promoting the empowerment of people with disabilities. Studia Humanistyczne/Studia Humanistyczne AGH, 17(4), 51. https://doi.org/10.7494/human.2018.17.4.51
- Subedi, K. R. (2021). Determining the sample in qualitative research. Scholars Journal, 1–13. https://doi.org/10.3126/scholars.v4i1.42457
- Swain, J., & French, S. (2000). Towards an affirmation model of disability. Disability Society, 15(4), 569–582. https://doi.org/10.1080/09687590050058189
- Tajfel, H., & Turner, J. C. (2004). The social identity theory of intergroup behavior. In Political psychology (pp. 276-293). Psychology Press.
- Tiemens, K., Nicholas, D., & Forrest, C. R. (2012). Living with Difference: Experiences of Adolescent Girls with Cleft Lip and Palate. The Cleft Palate-Craniofacial Journal, 50(2), 27–34. https://doi.org/10.1597/10-278
- Venkatesan, S., GY, Y., & Gopalkrishnan, I. K. (2023). Positivity and Disability: A Descriptive Narrative review. Innovare Journal of Education, 1–4. https://doi.org/10.22159/ijoe.2023v11i4.48070
- Venkatesh, R. (2009). Syndromes and anomalies associated with cleft. Indian Journal of Plastic Surgery/Indian Journal of Plastic Surgery, 42(3), 51. https://doi.org/10.4103/0970-0358.57187
- Vezzù, E., Soresi, S., Ferrari, L., & Nota, L. (2013). Quality of life and self-efficacy beliefs in young adults with cleft lip and palate. International Journal on Disability and Human Development, 13(1), 105–111. https://doi.org/10.1515/ijdhd-2013-0015
- Wehby, G., & Cassell, C. (2009). The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Diseases, 16(1), 3–10. https://doi.org/10.1111/j.1601-0825.2009.01588.x
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