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

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.

The effect of combined education on the knowledge and care and supportive performance of parents with children with cleft lip and palate: A clinical trial study

“…Also encourage the mother to start feeding as soon as possible to help the mother-child emotional bond. 16…”

“…Also encourage the mother to start feeding as soon as possible to help the mother-child emotional bond. 16 Considering these matters, one of the most important problems of these patients is associated with postoperative care by parents, such as feeding the child with cleft lip and palate, cares before and after operating the cleft lip and palate, physical and psychological cares for these children in long-term, cares at home, and parents' limiting attitudes and beliefs in the use of medications by the patient. All of these problems lead to more problems for the patient, family, and the community due to lack of sufficient knowledge in this regard.…”

Anxiety, depression, stress and fear of COVID-19 in non-syndromic oral cleft children' parents and caregivers

“…Only two studies that measured psychological impacts in parents of NSCL/P childrens in Brazil was identi ed [11,37].…”

“…This study found that stress levels used to progressively reduce after the intervention. Carvalho et al [37] evaluated parents and caregivers emotions through of authors elaborate questionnaire. This one not showing anxiety, depression and/or stress symptoms, but feelings as fear, despair, sad and "shok" as more prevalent after cleft diagnosis.…”

Supporting Parents Through a Cleft Palate

“…Interventions and education, directed early, ease feelings of worry (ACPA, 2019). Connecting the family at the time of diagnosis with the interdisciplinary team provides clarification, knowledge, and support (Carvalho et al, 2021). Prenatal diagnosis and counseling fostered confidence in caregiving and improved outcomes for children with cleft lip/palate (Sreejith et al, 2018).…”