Health-related quality of life among Thai children and adolescents with cleft lip and/or palate: a qualitative study
Article Sidebar
Main Article Content
Abstract
Background: Having cleft lip and/or palate (CLP) can be challenging for children and adolescents and appears to impact their health-related quality of life (HRQoL). To date, there is limited empirical work in this field, demonstrating a need for further exploration of qualitative research, especially with children and adolescents with CLP in Thailand.
Objectives: To explore the HRQoL perceptions of Thai children and adolescents with CLP.
Materials and methods: The present study was a qualitative approach. Eight children and adolescents with CLP, ages 9 to 14, were selected at the speech therapy clinic at Chiang Mai University, Thailand. Data were collected through a semi-structured interview guideline. The data were analyzed using thematic analysis.
Results: Four main themes were identified: (1) physical well-being, (2) psycho-emotional well-being, (3) social well-being, and (4) school functioning. Five subthemes
further described this experience: communicative competence; teasing or bullying; self-perception and self-esteem; family and friend support; and difficulties in academic performance. Each theme was described with illustrative quotes.
Conclusion: The findings of this study provide a more thorough picture of HRQoL in children and adolescents with CLP. They have communicative competence, psycho-emotional well-being, social functioning, and school functioning issues rather than significant physical symptoms. Professionals should continue intervening as part of an interdisciplinary strategy to avoid or at least lessen negative effects on these children and adolescents with CLP.
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Personal views expressed by the contributors in their articles are not necessarily those of the Journal of Associated Medical Sciences, Faculty of Associated Medical Sciences, Chiang Mai University.
References
Saal HM. Classification and Description of Nonsyndromic Clefts. In: Wyszynski DF, Editor. Cleft lip and palate. Oxford University Press. 2002: 47-52.
Mossey P, Little J, Munger RG, Dixon MJ, Shaw WC. Cleft lip and palate. Lancet. 2009; 374: 1773-85. doi.
org/10.1016/S0140-6736(09)60695-4.
World Health Organization. Human genomics in global health: international collaborative research on craniofacial anomalies. World Health Organization. 2020.
Dixon MJ, Marazita ML, Beaty TH, Murray JC. Cleft lip and palate: understanding genetic and environmental influences. Nat. Rev. Genet. 2011; 12(3): 167-78. doi.org/10.1038/nrg2933.
Detpithak A, Noochpoung R, Yensom N. Incidence of cleft lip and/or cleft palate of live births in Chiangmai from 2015-2019. Th Dent PH J. 2020; 25: 41-9.
Bickham RS, Ranganathan K, Wombacher NR, et al. Speech perceptions and health-related quality of life among children with cleft lip and palate. J Craniofac Surg. 2017; 28: 1264-8. doi.org/10.1097% 2FSCS.0000000000003718.
Defabianis P, Cogo C, Massa S, Romano F. OralHealth-Related Quality of Life among Non-Syndromic School-Age Children with Orofacial Clefts: Results from a Cross-Sectional Study in Northern Italy. Children. 2022; 9(7): 1098. doi.org/10.3390/children 9071098.
Glener AD, Allori AC, Shammas RL, et al. A populationbased exploration of the social implications associated with cleft lip and/or palate. Plast Reconstr Surg Glob Open. 2017; 5: e1373. doi.org/10.1097%2FGOX. 0000000000001373.
Lovegrove E, Rumsey N. Ignoring it doesn’t make it stop: adolescents, appearance, and bullying. Cleft Palate Craniofac J. 2005; 42(1): 33-4. doi.org/10.1597/03-097.5.1.
Locker D, Jokovic A, Tompson B: Health-related quality of life of children aged 11 to 14 years with orofacial conditions. Cleft Palate Craniofac J. 2005; 42(3): 260-6. doi.org/10.1597/03-077.1.
Chimruang J, Soadmanee O, Srisilapanan P, Patjanasoontorn N, Nanthavanich N, Chuawanlee W. A qualitative study of health-related quality of life and psychosocial adjustments of Thai adolescents with repaired cleft lips and palates. J Med Assoc Thai. 2011; 94 Suppl 6: S45-S50.
Revicki DA, Kleinman L, Cella D. A history of healthrelated quality of life outcomes in psychiatry. Dialogues Clin Neurosci. 2014; 16: 127-35. doi.org/10.31887/DCNS.2014.16.2/drevicki.
Varni JW, Burwinkle TM, Lane MM: Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005; 3:
doi.org/10.1186/1477-7525-3-34.
Klassen AF, Tsangaris E, Forrest CR, Wong KW, Pusic AL, Cano SJ, et al. Quality of life of children treated for cleft lip and/or palate: a systematic review. J Plast Reconstr Aesthet Surg. 2012; 65(5): 547-57. doi.org/10.1016/j.bjps.2011.11.004.
Pamplona M., Ysunza A., González M., Ramírez E., Patiño C. Linguistic development in cleft palate patients with and without compensatory articulation disorder. Int. J. Pediatr. Otorhinolaryngol. 2000; 54(2- 3): 81-91. doi.org/10.1016/S0165-5876(00)00332-3.
Alvarez D., Palomares M., Giugliano C., Curihual P. Articulación compensatoria en niños chilenos con fisura labiopalatina. Rev. Chil. Fonoaudiol. 2014; 13: 03-16.
Kummer AW. Cleft palate and craniofacial anomalies: effects on speech and resonance. New York: Cengage Learning; 2008.
Kanthawong T, Suttharangsee W, Ritthagol W. Selfesteem in adolescents with cleft lip and palate treated in orthodontic clinic, dental hospital, Prince of Songkla University: A pilot study. J Dent Assoc Thai. 2013; 63(1): 20-30.
Richman LC, Eliason MJ, Lindgren SD. Reading disability in children with cleft lip and/or palate. Cleft Palate J. 1988; 25(1): 21-5.
Wehby GL, Collet B, Barron S, Romitti PA, Ansley TN, Speltz M. Academic achievement of children and adolescents with oral clefts. Pediatrics. 2014; 133: 785-92. doi.org/10.1542/peds.2013-3072.
Sparkes AC, Smith B. Qualitative Research Methods in Sport, Exercise and Health: From Process to product. 1st ed., Routledge Publishing, New York, USA. 2014.
Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: SAGE, 2009.
Bernard H. Research Methods in Cultural Anthropology. Newbury Park, California: Sage. 1988.
Braun V, Clarke V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006; 3: 77-101.
Long T, Johnson M. Rigour, reliability and validity in qualitative research. Clin Eeffect Nurs. 2000; 4: 30-7.
Morse JM, Barrett M, Mayan M, Olson K, Spiers J: Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods. 2008; 1 (2): 13-22. doi.org/10.1177/1609406902001 00202.
Hamlet C, Harcourt D. Older adults’ experiences of living with cleft lip and palate: a qualitative study exploring aging and appearance. Cleft Palate Craniofac J. 2015; 52: e32-e40. doi: 10.1597/13-308.
Konan P, Manosudprasit M, Pisek P, Pisek A, Wangsrimongkol T. Oral Health-Related Quality of Life in Children and Young Adolescent Orthodontic Cleft Patients. J Med Assoc Thai. 2015; 98 Suppl 7: S84-S91.
Prathanee B. Development of Speech Services for People with Cleft Palate in Thailand: Lack of Professionals. J Med Assoc Thai. 2012; 95: 80.
Chung KY, Sorouri K, Wang L, Suryavanshi T, Fisher D. The impact of social stigma for children with cleft lip and/or palate in low-resource areas: a systematic review. Plast Reconstr Surg Glob Open. 2019; 7(10): e2487. doi: 10.1097/GOX.0000000000002487.
Eiserman W. Unique outcomes and positive contributions associated with facial difference: Expanding research and practice. Cleft Palate Craniofac J. 2001; 38: 236-44. doi.org/10.1597/1545-1569_ 2001_038_0236_uoapca_2.0.co_2.
Cash TF, Pruzinsky T (eds): Body Images: A Handbook of Theory, Research, and Clinical Practice. New York: Guilford Press; 2002: 38-46.
Kramer FJ, Gruber R, Fialka F, Sinikovic B, Hahn W, Schliephake H. Quality of life in school-age children with orofacial clefts and their families. J Craniofac Surg. 2009; 20(6): 2061-6. doi: 10.1097/SCS.0b013e- 3181be8892.
Collett BR, Leroux B, Speltz ML. Language and early reading among children with orofacial clefts. Cleft Palate Craniofac J. 2010; 47(3): 284-92. doi: 10.1597/ 08-172.1.