Parents' Emotional and Social Experiences of Caring a Child with Cleft Lip and/or Palate

Authors

  • Naiara Oliveira Carvalho
  • Maria Franciele Soares Matos
  • Iara Freire Costa Belchior
  • Marcos Bruno Araújo
  • Cristiane Tomaz Rocha
  • Beatriz Gonçalves Neves

Keywords:

Clef Palate, Cleft Lip, Emotions, Parents, Caregivers

Abstract

Objective: To evaluate the emotional and social experiences of parents or caregivers of children with cleft lip and/or palate (CL/P) in a city in the Northeastern of Brazil. Material and Methods: A quantitative and cross-sectional study was conducted among parents or caregivers of children with CL/P by interviews based on a questionnaire. Interviews were conducted during the First Smile Project in Sobral, Ceará, Brazil. All participants (n=41) agreed to participate in the interview and signed an informed consent. The data was analyzed in SPSS software version 22.0. Results: The majority of participants were female (87.2%), with a mean age of 37 years, with a low level of education and low family income. The great majority (90.2%) of the parents were not prenatally diagnosed to have CL/P babies. Of those interviewed, 56.1% mentioned that the first diagnosis of cleft lip and palate was not presented by the professionals in a clarifying way to the family. Fear (36.6%) and sadness (19.5%) were the main feelings experienced when the child was diagnosed with fissure. Feeding (48.8%) was pointed out as the main concern in caring for a child with CL/P. Conclusion: The parents and caregivers interviewed faced important emotional and social problems that must be addressed by the professional team that assists the child with CL/P.

References

IPDTOC Working Group. Prevalence at birth of cleft lip with or without cleft palate: Data from the international perinatal database of typical oral clefts (IPDTOC). Cleft Palate Craniofac J 2011; 48(1):66-81. https://doi.org/10.1597/09-217

Mbuyi-Musanzayi S, Kayembe TJ, Kashal MK, Lukusa PT, Kalenga PM, Tshilombo FK, et al. Non-syndromic cleft lip and/or cleft palate: Epidemiology and risk factors in Lubumbashi (DR Congo), a case-control study. J Craniomaxillofac Surg 2018; 46(7):1051-8. https://doi.org/10.1016/j.jcms.2018.05.006

Silva HPVD, Arruda TTS, Souza KSC, Bezerra JF, Leite GCP, Brito MEF, et al. Risk factors and comorbidities in Brazilian patients with orofacial clefts. Braz Oral Res 2018; 32:e24. https://doi.org/10.1590/1807-3107bor-2018.vol32.0024

Nelson P, Glenny AM, Kirk S, Caress AL. Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature. Child Care Health Dev 2012; 38(1):6-20. https://doi.org/10.1111/j.1365-2214.2011.01244.x

Lewis CW, Jacob LS, Lehmann CU. The primary care pediatrician and the care of children with cleft lip and/or cleft palate. Pediatrics 2017; 139(5):e20170628. https://doi.org/10.1542/peds.2017-0628

Sreejith VP, Arun V, Cevarajan AP, Gopinath A, Sunil M. Psychological Effect of Prenatal Diagnosis of Cleft Lip and Palate: A Systematic Review. Contemp Clin Dent 2018; 9(2):304-8. https://doi.org/10.4103/ccd.ccd_673_17

Steinberg JP, Gosain AK. Thirty years of prenatal cleft diagnosis: What have we learned? Plast Reconstr Surg 2015; 136(3):550-7. https://doi.org/10.1097/PRS.0000000000001533

Baker SR, Owens J, Stern M, Willmot D. Coping strategies and social support in the family impact of cleft lip and palate and parents’ adjustment and psychological distress. Cleft Palate Craniofac J 2009; 46(3):229-36. https://doi.org/10.1597/08-075.1

Johansson B, Ringsberg KC. Parents' experiences of having a child with cleft lip and palate. J Adv Nurs 2004; 47(2):165-73. https://doi.org/10.1111/j.1365-2648.2004.03075.x

Feragen KB, Semb G, Heliövaara A, Lohmander A, Johannessen EC, Boysen BM, et al. Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child. J Plast Surg Hand Surg 2017; 51(1):81-7. https://doi.org/10.1080/2000656X.2016.1254642

Zeytinoglu S, Davey MP. It's a privilege to smile: impact of cleft lip palate on families. Fam Syst Health 2012; 30(3):265-77. https://doi.org/10.1037/a0028961

Stock NM, Costa B, White P, Rumsey N. Risk and protective factors for psychological distress in families following a diagnosis of cleft lip and/or palate. Cleft Palate Craniofac J 2020; 57(1):88-98. https://doi.org/10.1177/1055665619862457

IBGE. Cidades. Available from: https://www.cidades.ibge.gov.br/brasil/ce/sobral/panorama. [Accessed on July 9, 2020]. [In Portuguese].

Nidey N, Moreno Uribe LM, Marazita MM, Wehby GL. Psychosocial well-being of parents of children with oral clefts. Child Care Health Dev 2016; 42(1):42-50. https://doi.org/10.1111/cch.12276

Toledo Neto JL, Souza CM, Katakura EALB, Costa TV, Prezotto KH, Freitas TB. Knowledge of graduated nursing students on breast feeding newborns with cleft lip and palate. Rev Rene 2015; 16(1):21-8. https://doi.org/10.15253/2175-6783.2015000100004

Nelson PA, Kirk SA, Nurs B. parents’ perspectives of cleft lip and/or palate services: a qualitative interview. Cleft Palate Craniof J 2013; 50(3):275-85. https://doi.org/10.1597/11-293

Lindberg N, Berglund A-L. Mothers’ experiences of feeding babies born with cleft lip and palate. Scand J Caring Sci 2014; 28(1):66-73. https://doi.org/10.1111/scs.12048

Davies K, Lin Y-L, Callery P. Parents’ and children’s knowledge of oral health: a qualitative study of children with cleft palate. Int J Paediatr Dent 2017; 27(4):264-72. https://doi.org/10.1111/ipd.12258

Amstalden-Mendes LG, Xavier AC, Antunes DK, Ferreira AC, Tonocchi R, Fett-Conte AC, et al. Time of diagnosis of oral clefts: a multicenter study. J Pediatr 2011; 87(3):225-30. https://doi.org/10.2223/JPED.2084

Fleurke-Rozema JH, Van de Kamp K, Bakker MK, Pajkrt E, Bilardo CM, Snijders RJM. Prevalence, diagnosis and outcome of cleft lip with or without cleft palate in The Netherlands. Ultrasound Obstet Gynecol 2016; 48(4):458-63. https://doi.org/10.1002/uog.15834

Tabaquim MLM, Marquesini MAM. Study of the stress of parents of patients with cleft lip and palate in a surgical process. Estud Psicol 2013; 30(4):517-24. https://doi.org/10.1590/S0103-166X2013000400005

Nidey N, Moreno Uribe LM, Marazita MM, Wehby GL. Psychosocial well-being of parents of children with oral clefts. Child Care Health Dev 2016; 42(1):42-50. https://doi.org/10.1111/cch.12276

Kuttenberger J, Ohmer JN, Polska E. Initial counselling for cleft lip and palate: parents' evaluation, needs and expectations. Int J Oral Maxillofac Surg 2010; 39(3):214-20. https://doi.org/10.1016/j.ijom.2009.12.013

Maarse W, Boonacker CW, Breugem CC, Kon M, Manten GT, Van der Molen AB. A practical prenatal ultrasound classification system for common oral clefts. Prenat Diagn 2015; 35(9):894-900. https://doi.org/10.1002/pd.4631

Robbins JM, Damiano P, Druschel CM, Hobbs CA, Romitti PA, Austin AA, et al. Prenatal diagnosis of orofacial clefts: association with maternal satisfaction, team care, and treatment outcomes. Cleft Palate Craniofac J 2010; 47(5):476-81. https://doi.org/10.1597/08-177

Searle A, Neville P, Waylen A. Psychological growth and well-being in individuals born with cleft: An application of self-determination theory. Psychol Health 2017; 32(4):459-82. https://doi.org/10.1080/08870446.2016.1275630

Freitas JA, das Neves LT, de Almeida AL, Garib DG, Trindade-Suedam IK, Yaedú RY, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP)--Part 1: overall aspects. J Appl Oral Sci 2012; 20(1):9-15. https://doi.org/10.1590/S1678-77572012000100003

Freitas JA, Garib DG, Trindade-Suedam IK, Carvalho RM, Oliveira TM, Lauris Rde C, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies-USP (HRAC-USP)--part 3: oral and maxillofacial surgery. J Appl Oral Sci 2012; 20(6):673-9. https://doi.org/10.1590/S1678-77572012000600014

Boztepe H, Ay A, Kerimoglu Yıldız G, Çınar S. Does the visibility of a congenital anomaly affect maternal-infant attachment levels? J Spec Pediatr Nurs 2016; 21(4):200-11. https://doi.org/10.1111/jspn.12157

Vettore MV, Sousa Campos AE. Malocclusion characteristics of patients with cleft lip and/or palate. Eur J Orthod 2011; 33(3):311-7. https://doi.org/10.1093/ejo/cjq078

Freitas JA, Garib DG, Oliveira M, Lauris Rde C, Almeida AL, Neves LT, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies-USP (HRAC-USP)--part 2: pediatric dentistry and orthodontics. J Appl Oral Sci 2012; 20(2):268-81. https://doi.org/10.1590/S1678-77572012000200024

Freitas JA, Garib DG, Oliveira M, Lauris RC, Almeida AL, Neves LT, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: oral rehabilitation. J Appl Oral Sci 2012; 20(2):268-81. https://doi.org/10.1590/1679-775720130127

Freitas JA, Trindade-Suedam IK, Garib DG, Neves LT, Almeida AL, Yaedú RY, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 5: institutional outcomes assessment and the role of the Laboratory of Physiology. J Appl Oral Sci 2013; 21(4):383-90. https://doi.org/10.1590/S1678-77572012000600014

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Published

2021-11-13

How to Cite

Carvalho, N. O. ., Matos, M. F. S. ., Belchior, I. F. C. ., Araújo, M. B. ., Rocha, C. T. ., & Neves, B. G. . (2021). Parents’ Emotional and Social Experiences of Caring a Child with Cleft Lip and/or Palate. Pesquisa Brasileira Em Odontopediatria E Clínica Integrada, 21, e0168. Retrieved from https://revista.uepb.edu.br/PBOCI/article/view/678

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Original Articles