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

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

doi:10.1590/pboci.2021.058

Naiara Oliveira Carvalho, Iara Freire Costa Belchior + Show 4 more

Open Access

https://doi.org/10.1590/pboci.2021.058

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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, Ceara, 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.

Highlights

Material and Methods: A quantitative and cross-sectional study was conducted among parents or caregivers of children with cleft lip and/or palate (CL/P) by interviews based on a questionnaire
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
This study showed that most parents/caregivers received CL/P diagnosis after the child’s birth

Summary

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], and the incidence in cases that are not associated with syndromes is around 0.8 per 1,000 births [2].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 [2,3].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] because CL/P outcomes occur in the surgical, speech, hearing, dental, psychosocial, and cognitive aspects [5]. 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], and the incidence in cases that are not associated with syndromes is around 0.8 per 1,000 births [2]. Dental care is important for children with CL/P because oral health plays a significant role in cleft-related outcomes. 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]

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