Main Article Content
Cleft lip, Cleft palate, surveys and questionnaires, speech, hearing
Introduction: Orofacial clefts have a wide range of severity and can create functional and aesthetic issues for the affected individuals as well as influence their social interactions and general happiness. Our aim was to investigate how parents/caregivers score functional and aesthetic aspects of their child’s cleft and their child’s social interactions and happiness.
Method: Parents/caregivers attending the Christchurch Cleft Clinic in New Zealand between 2016 and 2019 completed a survey covering eight items—hearing, look of face, look of teeth, speech, teeth issues, food or liquid coming out of the nose, social interactions, general happiness and a free-text comment section. Items were scored using a visual analogue scale. Descriptive statistics were performed on the data and qualitative analysis of the free-text comments was conducted via thematic categorisation.
Results: A total of 226 completed surveys from 154 parents were assessed. Surveys that had any incomplete question (24) and/or had repeat submissions (72) were excluded, reducing the sample to 130 surveys. ‘Speech’, ‘look of the teeth’ and ‘teeth issues’ had the lowest (worst) mean scores. Negative functional issues relating to speech and fistulas were the most common free-text themes.
Conclusion: Speech was a common concern for parents, emphasising the importance of speech language therapy as a key component in cleft treatment. Parental concerns regarding the look of their child’s teeth and teeth issues highlight the need for an interdisciplinary treatment approach. The inclusion of otolaryngology and psychology services to improve issues that arise from hearing, social and emotional challenges is also recommended.
2. Thompson J, Stone PR, Sanders M, Borman B, Fowler PV. The incidence of orofacial cleft in live births in New Zealand. NZ Med J. 2016;129(1440):64–71. PMid: 27538040
3. Noar JH. A questionnaire survey of attitudes and concerns of three professional groups involved in the cleft palate team. Cleft Palate Craniofac J. 1992;29(1):92–95. https://doi.org/10.1597/1545-1569_1992_029_0092_aqsoaa_2.3.co_2 https://doi.org/10.1597/1545-1569(1992)029-2.3.CO;2
4. Noar JH. Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents. Cleft Palate Craniofac J. 1991;28(3):279–84. https://doi.org/10.1597/1545-1569(1991)028-2.3.CO;2 https://doi.org/10.1597/1545-1569_1991_028_0279_qsoaac_2.3.co_2 PMid:1911816
5. Waylen A, Ness AR, Wills AK, Persson M, Rumsey N, Sandy JR. Cleft care UK study, part 5: child psychosocial outcomes and satisfaction with cleft services. Orthod Craniofac Res. 2015;18(s2):47–55. https://doi.org/10.1111/ocr.12113 PMid:26567855 PMCid:PMC4670713
6. Sommerlad BC. Advances in cleft care over the last 40 years. Australas J Plast Surg. 2018;1(1):42–44. https://doi.org/10.34239/ajops.v1i1.57
7. Maykut P, Morehouse R. Data collection in the natural setting: studying people, studying settings. In: Beginning qualitative research: a philosophic and practical guide. London: Falmer Press/Taylor & Francis, 1994; ch 7.
8. Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ. 2000;320(7227):114–16. https://doi.org/10.1136/bmj.320.7227.114 PMid:10625273 PMCid:PMC1117368
9. Statistics New Zealand. Census quickstats about culture and identity [web page]..Wellington: New Zealand Government. [Cited 1 February 2020]. Available from: http://archive.stats.govt.nz/Census/2013-census/profile-and-summary-reports/quickstats-culture-identity.aspx
10. Yang AS, Richard BM, Wills AK, Mahmoud O, Sandy JR, Ness AR. Closer to the truth on national fistula prevalence after unilateral complete cleft lip and palate repair? The cleft care UK study. Cleft Palate Craniofac J. 2020;57(1):5–13. https://doi.org/10.1177/1055665619858871 PMid:31248277
11. Hall A, Wills AK, Mahmoud O, Sell D, Waylen A, Grewal S, Sandy JR, Ness AR. Centre-level variation in outcomes and treatment for otitis media with effusion and hearing loss and the association of hearing loss with developmental outcomes at ages 5 and 7 years in children with non-syndromic unilateral cleft lip and palate: the cleft care UK study, part 2. Orthod Craniofac Res. 2017;20(2):8–18. https://doi.org/10.1111/ocr.12184 PMid:28661080
12. Trotman CA, Phillips C, Essick GK, Faraway JJ, Barlow SM, Losken HW, Van Aalst J, Rogers L. Functional outcomes of cleft lip surgery. Part I: study design and surgeon ratings of lip disability and need for lip revision. Cleft Palate Craniofac J. 2007;44(6):598–606. https://doi.org/10.1597/06-124.1 PMid:18177192 PMCid:PMC3646291
13. Stiernman M, Maulina I, Zepa I, Jagomägi T, Tanaskovic N, Knežević P, Velikova R, Anastassov Y, Radojićić J, Pesic Z, Trifunović B, Drevensek M, Spataru R, Boljevic T, Dimovska R, Naumovski S, Rumsey N, Zucchelli F, Sharratt N, Argyrides M, Klintö K, Becker M, Persson M. Translation and pilot study of the Cleft Hearing Appearance and Speech Questionnaire (CHASQ). Eur J Plast Surg. 2019;42(6):583–92. https://doi.org/10.1007/s00238-019-01543-9
14. Grant S, Aitchison T, Henderson E, Christie J, Zare S, Murray JM, Dargie H. A comparison of the reproducibility and the sensitivity to change of visual analogue scales, Borg scales, and Likert scales in normal subjects during submaximal exercise. CHEST. 1999;116(5):1208–217. https://doi.org/10.1378/chest.116.5.1208 PMid:10559077
15. Wehby GL, Naderi H, Robbins JM, Ansley TN, Damiano PC. Comparing the visual analogue scale and the pediatric quality of life inventory for measuring health-related quality of life in children with oral clefts. Int J Environ Res Public Health. 2014;11(4):4280–291. https://doi.org/10.3390/ijerph110404280 PMid:24743844 PMCid:PMC4025006
16. Broder HL, Smith FB, Strauss RP. Habilitation of patients with clefts: parent and child ratings of satisfaction with appearance and speech. Cleft Palate Craniofac J. 1992;29(3):262–67. https://doi.org/10.1597/1545-1569_1992_029_0262_hopwcp_2.3.co_2
17. Damiano PC, Tyler MC, Romitti PA, Momany ET, Canady JW, Karnell MP, Murray JC. Type of oral cleft and mothers’ perceptions of care, health status, and outcomes for preadolescent children. Cleft Palate Craniofac J. 2006;43(6):715–21. https://doi.org/10.1597/05-206 PMid:17105335 PMCid:PMC2082116
18. Cleft Lip and Palate Support Group. Cleft Lip and Palate Support Group Newsletter: Speech Language Advocacy. Issue eight [PDF on internet]. Auckland: New Zealand. [May 2008; cited 4 June 2020]. Available from: https://www.cleft.org.nz/wp-content/uploads/newsletter8.pdf
19. Fowler PV, Corbett A, Lee M, Thompson JMD. A retrospective nationwide study of the dental caries experience of New Zealand children with orofacial cleft. Community Dent Oral Epidemiol. 2020;48(1):42–48. https://doi.org/10.1111/cdoe.12499 PMid:31596004
20. Raghavan S, Philip K, Batra P, Marcusson A. Aesthetic perceptions and psychosocial impact of malocclusion: comparison between cleft and non-cleft patients and their parents. Eur J Orthod. 2019;41(1):38–45. https://doi.org/10.1093/ejo/cjy022 PMid:29912312
21. Amati V, Meggiolaro S, Rivellini G, Zaccarin S. Social relations and life satisfaction: the role of friends. Genus. 2018;74(1):7. https://doi.org/10.1186/s41118-018-0032-z PMid:29755134 PMCid:PMC5937874
22. Holder M, Coleman B. The contribution of social relationships to children’s happiness. J Happiness Stud. 2007;10(3):329–49. https://doi.org/10.1007/s10902-007-9083-0
23. Quoidbach J, Taquet M, Desseilles M, de Montjoye Y-A, Gross JJ. Happiness and social behavior. Psychol Sci. 2019;30(8):1111–122. https://doi.org/10.1177/0956797619849666 PMid:31268832
24. Antia SD, Kreimeyer KH, Metz KK, Spolsky SC. Peer interactions of deaf and hard-of-hearing children. In: Marschark M, Spencer PE (ed). The Oxford handbook of deaf studies, language and education. Oxford: Oxford University Press, 2011; ch 2. https://doi.org/10.1093/oxfordhb/9780199750986.013.0013
25. Tobiasen JM, Hiebert JM. Combined effects of severity of cleft impairment and facial attractiveness on social perception: an experimental study. Cleft Palate Craniofac J. 1993;30(1):82–86. https://doi.org/10.1597/1545-1569_1993_030_0082_ceosoc_2.3.co_2
26. Shaw WC. The influence of children’s dentofacial appearance on their social attractiveness as judged by peers and lay adults. Am J Orthod. 1981;79(4):399–415. https://doi.org/10.1016/0002-9416(81)90382-1
27. Hunt O, Burden D, Hepper P, Johnston C. The psychosocial effects of cleft lip and palate: a systematic review. Eur J Orthod. 2005;27(3):274–85. https://doi.org/10.1093/ejo/cji004 PMid:15947228
28. American Cleft Palate Craniofacial Association. Team approval procedures manual. [PDF on Internet]. [Updated April 2020; cited 4 June 2020]. Available from: https://acpa-cpf.org/wp-content/uploads/2020/05/ACPA-Team-Approval-Procedures-Manual_Rev2020.pdf