“People look and ask lots of questions”: caregivers’ perceptions of healthcare provision and support for children born with cleft lip and palate

Hlongwa, P.; Rispel, Laetitia C.

doi:10.1186/s12889-018-5421-x

Cited by 40 publications

(44 citation statements)

References 47 publications

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“…A study pointed out the need to support families of children with cleft lip and palate beyond the support from the health system, which should provide quality care, including guidance and training to parents and caregivers. The study also pointed out the need for education and training of health professionals outside specialized centers, for public awareness-raising activities on birth defects and for social support programs (21) .…”

Section: Discussionmentioning

confidence: 97%

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Beluci

Mondini

Trettene

et al. 2019

Rev. esc. enferm. USP

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Objective: To evaluate the correlation between measures of quality of life and burden in family caregivers of infants with cleft lip and palate and to analyze possible associations between quality of life and sociodemographic variables. Method: Exploratory, cross-sectional study conducted in hospital specialized in the treatment of craniofacial anomalies, with caregivers who answered the following data collection instruments: sociodemographic characterization form, World Health Organization Quality of Life - BREF questionnaire and the Burden Interview Scale. The statistical analysis was conducted using the Pearson’s Correlation test, the Student’s t-test and the ANOVA test with a level of significance of 0.05. Results: 77 caregivers participated in the study. There was an inverse correlation between quality of life and burden in the Physical Health, Psychological, Social Relationships and Environment domains. There was a positive correlation between quality of life and family income in the Environment domain. Conclusion: The greater the burden on the caregiver, the lower was their perception of quality of life. Caregivers with higher family income and greater level of education presented a better perception quality of life in the Environment domain.

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Section: Discussionmentioning

confidence: 97%

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Beluci

Mondini

Trettene

et al. 2019

Rev. esc. enferm. USP

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“…Notwithstanding the controversies regarding the use of feeding plates, [45][46][47] feeding difficulties following the birth of babies with CLP are common and the feeding plate can assist with closure of the cleft to facilitate sucking and to prevent choking. A study among caregivers of CLP children found that feeding difficulties were one of the most distressing aspects in caring for the children, [48] highlighting the importance of adequate support and assistance to caregivers regarding feeding methods.…”

Section: Researchmentioning

confidence: 99%

“…This will assist with the reduction of possible physical impairment and societal courtesy stigma and discrimination. [48,52] There was variation in the number of team members at CLP centres, ranging from 2 to 8. In most centres, there was a scarcity of certain specialists.…”

Section: Researchmentioning

confidence: 99%

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Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa

2019

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Cleft lip and/or palate (CLP) is the most common congenital anomaly of the craniofacial complex, with an estimated worldwide prevalence of 1/500-700 live births. [1] In South Africa (SA), CLP is among the 5 most common birth defects reported, [2] with an estimated prevalence of 0.1-0.4/1 000 live births. [2-4] Affected children present with a number of medical problems and potential complications that include feeding difficulties, hearing loss, speech problems, disfigured appearance and dental malformation. [5-8] Hence, individuals with CLP require coordinated and specialised treatment offered by a multidisciplinary team, [9-11] which includes geneticists, maxillofacial surgeons, otolaryngologists, orthodontists, paediatricians, plastic surgeons, paediatric dentists, psychologists, professional nurses, social workers and speech and language therapists. [12-14] These teams are available in high-income countries (HICs). Various clinical protocols have been proposed for the treatment of CLP. [15] Many HICs have adopted national protocols and guidelines and have centralised services and/or established centres for the management and follow-up of affected individuals. [16-19] The advantages of centralisation and/or concentration of specialised services include the following: coordination of treatment, standardised data collection, availability of a critical mass of experts, clinical audit and review to enhance quality of care, responsiveness to patient and family needs, and ongoing monitoring and evaluation. [12,20-26] Globally, it is estimated that only 20% of individuals with CLP have access to comprehensive treatment that involves a team coordinated approach. [27] The treatment and care gaps include: lack or shortages of healthcare professionals, lack of infrastructure and delays in surgical repair of the clefts. [27,28] These gaps are most pronounced in low-and middle-income countries (LMICs) in Africa, Asia and South America. [28,29] In many LMICs, outreach programmes by nongovernmental organisations (NGOs) have assisted in improving the services for individuals with CLP. [29-34] These NGOs, together with support groups that include parents of the affected children, have played an important role in the ongoing management of CLP patients. However, the majority of LMICs, including SA, lag behind in terms of national treatment protocols, standardised data collection, access to care by a multidisciplinary team, and evaluation of treatment outcomes. [12,18,35] Notwithstanding improvements in the treatment of CLP individuals in the preceding decades, [36-38] there is still no universal protocol for repair and ongoing clinical management. However, treatment modalities in the management of CLP are often based on chronological age and dentofacial development. [38] The common elements of clinical standards and sequence of treatment of CLP are shown in Table 1. [38] At birth, genetic counselling is given to parents, and feeding of the baby is evaluated. Depending on the size of the cleft, feeding plates are recommended withi...

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“…Individuals with NSCL/P are also associated with an increased risk of cancers [ 2 ] and an elevated overall mortality into adulthood [ 3 ]. NSCL/P increases economic and psychosocial burdens on the subjects, their families, and the society [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

Targeting YOD1 by RNA Interference Inhibits Proliferation and Migration of Human Oral Keratinocytes through Transforming Growth Factor-β3 Signaling Pathway

Zhou

Chen

et al. 2018

BioMed Research International

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Objective We have identified a gene YOD1 encoding deubiquitinating enzyme (DUB) responsible for nonsyndromic cleft lip with or without cleft palate (NSCL/P). We aimed to determine the effects of YOD1 RNA interference (RNAi) on cell proliferation and migration, playing an important role in lip and palate formation, and to clarify whether the mechanisms involved TGF-β3 signaling associated with NSCL/P. Methods RNAi was applied to construct vectors expressing YOD1 small interference RNAs (siRNAs). The vectors were transfected into the human oral keratinocytes (HOK) cells. The cell proliferation and migration were evaluated by the cell counting kit-8 (CCK-8) assay and wound healing assay, respectively. The mRNA levels were detected by quantitative real-time reverse transcription-polymerase chain reaction (qRT-PCR). The protein levels were investigated by western blotting. Results The proliferation of YOD1 siRNA-transfected HOK cells was remarkably inhibited. The migration rate was significantly decreased in the YOD1 siRNA-transfected HOK cells. The TGF-β3 mRNA and protein levels were decreased significantly by siRNA-mediated knockdown of YOD1. YOD1 RNAi reduced the phosphor-Smad2/3 levels significantly. Conclusions YOD1 RNAi may inhibit cell proliferation and migration associated with the pathogenesis of NSCL/P through TGF-β3 signaling. The study indicates a novel role of YOD1 in regulating TGF-β3 signaling to affect cell proliferation and migration resulting in NSCL/P.

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“People look and ask lots of questions”: caregivers’ perceptions of healthcare provision and support for children born with cleft lip and palate

Cited by 40 publications

References 47 publications

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa

Targeting YOD1 by RNA Interference Inhibits Proliferation and Migration of Human Oral Keratinocytes through Transforming Growth Factor-β3 Signaling Pathway

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