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.

Keywords:
Clef Palate; Cleft Lip; Emotions; Parents; Caregivers

Introduction

The cleft lip and/or palate (CL/P) is the most common congenital defect that occurs in the population. This defect has a prevalence ranging from 1:500 to 1:2,500 live births [¹[1] 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
https://doi.org/10.1597/09-217... ], and the incidence in cases that are not associated with syndromes is around 0.8 per 1,000 births [²[2] 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
https://doi.org/10.1016/j.jcms.2018.05.0... ].

Its etiology is multifactorial, consisting of a combination of genetic and environmental factors, including family history of CL/P, parental consanguinity, maternal alcohol consumption, infections, smoking, hypertension, low supplementation of vitamins and minerals and consumption of analgesics, antibiotics and antihypertensives during pregnancy [²[2] 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
https://doi.org/10.1016/j.jcms.2018.05.0... ^,3[3] 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
https://doi.org/10.1590/1807-3107bor-201... ].

Children with CL/P might experience long-term treatment from birth to young adulthood to treat consequences of the condition relating to both function and appearance [⁴[4] 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
https://doi.org/10.1111/j.1365-2214.2011... ] because CL/P outcomes occur in the surgical, speech, hearing, dental, psychosocial, and cognitive aspects [⁵[5] 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
https://doi.org/10.1542/peds.2017-0628... ]. Early dental care is particularly important for children with CL/P because oral health plays a significant role in cleft-related outcomes. Good oral health, ideally resulting from regular home oral hygiene and professional dental care, influences a child’s ability to obtain timely and adequate orthodontic treatment, which is an essential component of the reconstructive process and required precursor to surgery for children with CL/P [⁵[5] 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
https://doi.org/10.1542/peds.2017-0628... ].

CL/P affects not just the child born with the condition, but also the child's parents. The timing of a child’s diagnosis affects how parents cope and adapt. Prenatal diagnosis enables anticipatory guidance of the parents by professionals, which might improve the quality of the treatment received by the child and promote a better quality of life of the patient and family [⁶[6] 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
https://doi.org/10.4103/ccd.ccd_673_17... ].

The literature reports various emotional reactions experienced by parents at the birth of a child with CL/P, such as shock, sadness, fear, grief, guilt, worry and anger, which may impact the families’ lives [⁷[7] 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
https://doi.org/10.1097/PRS.000000000000... ]. Parents may wish to share their feelings and expectations and get emotional support from experienced professionals at the moment of the diagnosis, which may help them cope with these feelings properly and reorganize to meet the needs of their affected child [⁸[8] 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
https://doi.org/10.1597/08-075.1... ].

Several studies have investigated the social and emotional difficulties among parents caring for children with clefts, such as anxiety, depression and poor psychological ‘adjustment’ [⁴[4] 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
https://doi.org/10.1111/j.1365-2214.2011... ^,9[9] 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
https://doi.org/10.1111/j.1365-2648.2004...

[10] 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
https://doi.org/10.1080/2000656X.2016.12... ^-11[11] 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
https://doi.org/10.1037/a0028961... ]. However, there is still a lack of studies investigating these experiences faced by parents and/or caregivers of children with CL/P in Brazil. Thus, considering that a long-term treatment pathway is usually experienced with a psychological impact on parents [¹²[12] 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
https://doi.org/10.1177/1055665619862457... ], the present study aimed to evaluate the emotional and social experiences of parents or caregivers of children with CL/P in a city in the Northeastern of Brazil.

Material and Methods

Study Design

A quantitative, descriptive and cross-sectional study was conducted among parents or caregivers of children with CL/P by interviews based on a questionnaire.

Sample Selection

A convenience sampling was used for this study. Parents or caregivers that accompanied patients for oral clefts corrective surgery at the “Santa Casa de Misericórdia” Hospital in Sobral, Ceará, during a multi-professional treatment campaign called “First Smile Project” were invited to participate in this study. The inclusion criteria were parents or caregivers who had at least 20 minutes to be interviewed.

This hospital is a reference center in the care of patients with malformations of CL/P of the Northern region of the state of Ceará, Brazil. The city of Sobral is located in the state of Ceará, 235 km from the state capital, Fortaleza. It has an estimated population of 208,935 inhabitants and is considered the fifth most populous municipality in the state [¹³[13] IBGE. Cidades. Available from: www.cidades.ibge.gov.br/brasil/ce/sobral/panorama]. [Accessed on July 9, 2020]. [In Portuguese].
www.cidades.ibge.gov.br/brasil/ce/sobral... ].

Pilot Study

A pilot study was carried out to assess the questionnaire proposed for the interview in order to verify if participants understood the questions asked. The questionnaire was designed by the authors and based on previous studies [³[3] 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
https://doi.org/10.1590/1807-3107bor-201... ^,10[10] 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
https://doi.org/10.1080/2000656X.2016.12... ]. The parents or caregivers interviewed (n=12) on the pretest were not included in the final sample. In addition, this phase was also used as training for interviewers, who consisted of dental undergraduate students that were participants of a project from the Dental School of the Federal University of Ceará directed to patients with oral clefts.

Interview

All volunteers were interviewed during the days of the First Smile Campaign in the hospital during the screening of the patients by two calibrated interviewers.

The interview script consisted of a questionnaire with objective and subjective questions that aimed to address the emotional and social experiences of parents or caregivers of children with CL/P and how they dealt with such experiences. The questionnaire was composed of two parts: the first one, based on socio-demographic profile and pregnancy history, consisting of 20 questions, and the second one was related to the emotional and social experiences, which consisted of 15 questions, subdivided into four sections. The interviews were conducted in approximately 20 minutes in a private and quiet room of the hospital.

Data Analysis

Data were tabulated in Microsoft Excel and then analyzed using SPSS version 22.0 (IBM Corp., Armonk, NY, USA). Descriptive statistics was used (absolute and relative frequencies).

Ethical Aspects

The study design and informed consent were approved by the Ethics Committee of School of Medicine, Federal University of Ceará (Process# 87963418.9.0000.5054). Volunteers, who fulfilled inclusion criteria, took part in this study after signing an informed written consent.

Results

A total of 41 parents or caregivers were included in the study. The majority of the respondents were female (87.2%). It was observed that 43.9% of the interviewees were in the age range of 30 to 39 years, with a mean age of 35.15 (± 8.74) years. Regarding the educational level of parents/caregivers, 39% not completed primary education and 19.5% completed primary school. Regarding family income, 65.9% showed a minimum income less than or equal to a Brazilian minimum wage, approximately $209 in this appraised period (Table 1).

According to the interviewees, 80.5% of the mothers received prenatal care. However, the great majority (90.2%; n=37) of the parents were not prenatally diagnosed to have CL/P babies. In only 9.8% of the cases, the child was born prematurely. Approximately 54% of the parents had a male affected child. Only 7.3% of the parents were close relatives. Moreover, 46.3% of the respondents reported having another family member with CL/P. The majority of mothers (56.1%) did not use teratogenic substances during pregnancy; however, 12.2% consumed cigarettes and 7.3% alcohol during the gestational period (Table 2).

When questioned about the diagnosis of the fissure, more than half of the respondents (56.1%) pointed out that it was presented in a clarifying way. However, 48.8% of the total respondents mentioned that they had never received an explanation about what oral clefts are. The majority of the participants (63.4%) stated that the first treatment option was corrective surgery of the fissure and 85.4% answered that they had an interest in seeking a dental service after cheiloplasty and/or palatoplasty (Table 3).

With regard to the feelings experienced by the parents or caregivers as soon after clefts’ diagnosis, it was verified that 36.6% felt "Fear", 19.5% reported "Sadness", while 14.6% reported "Despair/Shock" and 12.2% reported a "Normality" situation. In 29.3% of cases, the family accepted the situation with normality; however, 26.8% were worried and 9.8% reacted negatively to the situation of a member with CL/P. The child diet was the main concern (48.8%) cited by parents/caregivers, followed by social relations (19.5%) and 9.8% indicated that there were no difficulties or concerns about the patient with CL/P (Table 4).

Discussion

The present study verified parents’ emotional and social experiences of caring a child with CL/P. Parents or caregivers might experience a long-term child’s treatment and face difficult situations in their complex journey. The feelings experienced by the participants of this study are in agreement with the literature since the main reactions reported by mothers were surprise, crying, shock, despair, denial, fear and other feelings [⁶[6] 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
https://doi.org/10.4103/ccd.ccd_673_17... ^,14[14] 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
https://doi.org/10.1111/cch.12276... ]. Fear is still the main feeling that the family needs to deal with because the care and development of a child with CL/P may cause suffering and stress [¹⁴[14] 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
https://doi.org/10.1111/cch.12276... ].

Most respondents indicated that feeding was the main concern. Feeding care is one of the most important difficulties that the family can face with the newborn [¹⁵[15] 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
https://doi.org/10.15253/2175-6783.20150... ]. In babies with CL/P, concerns are intensified due to abnormalities in face formation. Food intake in the first months of life may be compromised, resulting in many cases of child malnutrition [¹⁶[16] 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.]
https://doi.org/10.1597/11-293... ]. Therefore, newborn feeding is largely difficult to perform in these patients. Many mothers still do not feel safe to cope with the challenges related to feeding a baby with CL/P [¹⁷[17] 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.]
https://doi.org/10.1111/scs.12048... ]. This issue becomes even more relevant because when added to fear and lack of experience, these concerns intensify and maybe a limiting factor for a healthy and normal infant feeding [¹⁸[18] 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
https://doi.org/10.1111/ipd.12258... ].

This study showed that most parents/caregivers received CL/P diagnosis after the child’s birth. However, early diagnosis is important to promote family contact with specialists, favoring knowledge of different feeding techniques, avoiding weaning in possible cases and allowing the planning of neonatal and therapeutic care [¹⁹[19] 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
https://doi.org/10.2223/JPED.2084... ^,20[20] 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
https://doi.org/10.1002/uog.15834... ].

Regarding the diagnosis, more than half of the interviewees stated that they were well informed about CL/P. In order to face and overcome the experiences and reactions, the family needs clarification and care, as well as continuous assistance by professionals from different areas who are prepared to listen sensitively, create a dialogue without denying the defect and highlight positive aspects [²¹[21] 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
https://doi.org/10.1590/S0103-166X201300... ^,22[22] 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
https://doi.org/10.1111/cch.12276... ]. Thus, this initial counseling should be performed with the parents to reduce parents/caregivers’ expectations and promote psychological support to the family [²³[23] 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
https://doi.org/10.1016/j.ijom.2009.12.0... ].

In the present study, participants showed surprise and fright, triggered by the diagnosis of CL/P at the time or after the baby’s birth, as well as the lack or limited knowledge about this condition. However, the late diagnosis may justify the findings of this study, as shown previously [²⁴[24] 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
https://doi.org/10.1002/pd.4631... ]. In this way, quality care and assistance by many health professionals is an important way of a complete follow-up of these parents, providing basic care to the most advanced levels of care [²⁵[25] 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
https://doi.org/10.1597/08-177... ]. The psychological health of parents should also be emphasized in a coordinated multidisciplinary care [¹²[12] 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
https://doi.org/10.1177/1055665619862457... ].

It is known that children with clefts and their families may be “stigmatized” because of a perceived visible facial appearance and may have to deal with low levels of social support, experiencing discomfort, anxiety or rejection [²⁶[26] 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
https://doi.org/10.1080/08870446.2016.12... ]. This psychosocial adjustment may differ in parents of children with CL/P. Regarding gender, parents of boys have a greater perception of social support than girls' parents. Besides, in cases of high household income, the self-esteem and perception of social support are greater. Therefore, it is important to note that parents from poor households may be at greater risk for psychosocial problems [¹⁴[14] 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
https://doi.org/10.1111/cch.12276... ].

The majority of participants stated that the first treatment option was corrective surgery of fissure, which is in accordance with a protocol established by a specialized hospital for craniofacial anomalies with 40 years of experience [²⁷[27] 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
https://doi.org/10.1590/S1678-7757201200... ]. Furthermore, the treatment protocol for these patients also involves a surgical approach, including alveolar bone graft surgery and orthognathic surgery [²⁸[28] 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
https://doi.org/10.1590/S1678-7757201200... ]. According to Boztepe et al. [²⁹[29] Boztepe H, Ay A, Kerimoglu Yildiz G, Çinar 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
https://doi.org/10.1111/jspn.12157... ], the possibility of treatment, information delivery, and support by health professionals during pregnancy or after a child's birth reduced most concerns about the effectiveness of corrective fissure surgery. In the current study, most of the respondents pointed out that they are interested in seeking dental service after corrective surgery. Guidelines for dental care should persist and parents should be advised about the importance of early dental care [³⁰[30] 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
https://doi.org/10.1093/ejo/cjq078... ]. It should be stressed that the monitoring by a pediatric and orthodontic dentist is essential to stimulate breastfeeding, maintain good oral health and diagnose/correct malocclusions [³¹[31] 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
https://doi.org/10.1590/S1678-7757201200... ].

Furthermore, it must be emphasized that patients with CL/P should receive a proper rehabilitation treatment with an interdisciplinary approach based on physiology, stability, aesthetics, hygiene conditions and the individual's expectations. Considering that children with CL/P may face speech problems due to the presence of fistula or an unrepaired palate, palatal prosthesis may be indicated as a treatment for velopharyngeal dysfunction [³²[32] 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
https://doi.org/10.1590/1679-77572013012... ]. Ideally, all patients with CL/P should be assessed preoperatively and postoperatively to evaluate the impact of dental and surgical procedures, considering that oral clefts can modify the stomatognathic system and cause functional disorders [³³[33] 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
https://doi.org/10.1590/S1678-7757201200... ].

Among the limitations of this study, the participants were selected during a multi-professional treatment campaign according to a convenience sampling. Further studies are necessary to check whether a greater sample could achieve the same results. Also, a qualitative approach/research could probably provide a more in-depth analysis of parents’ emotional and social responses in relation to experiences with a CL/P child.

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. Our findings support that parents or caregivers for children with CL/P are submitted to intense experiences and emotions that interfere significantly with their child care. Some relevant aspects were identified in this study: the emotional experiences of parents or caregivers; major difficulties and concerns about the development of the child diagnosed with CL/P. Finally, more research is necessary to explain how parents experience their child's long-term and complex treatment journey and describe parents' perspectives regarding this condition.

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