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Revista da Escola de Enfermagem da USP

Print version ISSN 0080-6234On-line version ISSN 1980-220X

Rev. esc. enferm. USP vol.53  São Paulo  2019  Epub Apr 29, 2019

http://dx.doi.org/10.1590/s1980-220x2017047603432 

ORIGINAL ARTICLE

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

Correlación entre calidad de vida y sobrecarga en cuidadores familiares de bebés con fisura labiopalatina

Marli Luiz Beluci1 
http://orcid.org/0000-0003-2518-1875

Cleide Carolina da Silva Demoro Mondini2 
http://orcid.org/0000-0001-9169-7269

Armando dos Santos Trettene2 
http://orcid.org/0000-0002-9772-857X

Rosana Aparecida Spadoti Dantas1 
http://orcid.org/0000-0002-3050-7000

1Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, Ribeirão Preto, SP, Brazil.

2Universidade de São Paulo, Hospital de Reabilitação de Anomalias Craniofaciais, Bauru, SP, Brazil.

ABSTRACT

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.

DESCRIPTORS: Quality of Life; Caregivers; Cleft Lip; Cleft Palate

RESUMEN

Objetivo:

Evaluar la correlación entre las medidas de calidad de vida y sobrecarga en cuidadores familiares de bebés con fisura labiopalatina y analizar posibles relaciones entre la calidad de vida y las variables sociodemográficas.

Método:

Estudio exploratorio, transversal, realizado en un hospital de referencia en el tratamiento de anomalías craneofaciales, con cuidadores que respondieron a los siguientes instrumentos de recolección de datos: formulario para caracterización sociodemográfica, cuestionario World Health Organization Quality of Life - Bref y escala Burden Interview. Para el análisis estadístico se utilizaron las pruebas de Correlación de Pearson, t de Student y Anova, con nivel de significación de 0,05.

Resultados:

Participaron 77 cuidadores. Se constató correlación inversa entre las medidas de calidad de vida y sobrecarga en los dominios Físico, Psicológico, Relaciones Sociales y Medio Ambiente. Entre calidad de vida e ingresos familiares, se verificó correlación positiva con el dominio Medio Ambiente.

Conclusión:

En el grupo estudiado, cuanto mayor era la sobrecarga de la cuidadora, tanto menor era su percepción de la calidad de vida. Cuidadores con mayores ingresos familiares y mayor estabilidad presentaron mejor percepción de la calidad de vida referente al dominio Medio Ambiente.

DESCRIPTORES: Calidad de Vida; Cuidadores; Labio Leporino; Fisura del Paladar

INTRODUCTION

Cleft lip and palate are a malformation that occurs to the baby between the fourth and twelfth week of pregnancy. In Brazil, its prevalence is one in every 650 births. This malformation involves functional, aesthetic and psychosocial aspects, and demands treatment and rehabilitation that must be performed by a multidisciplinary team1.

The family is essential in the rehabilitation of patients with cleft lip and palate, and they must consider making changes in their daily life2. The diagnosis, birth and stages of the treatment of the child with cleft lip and palate require and enable the family to learn and make adaptations3. To this end, care must be specialized, comprehensive, humanized, and performed by a multidisciplinary team1),(4. Therefore, it is essential to support the family during the entire rehabilitation treatment of the child with cleft lip and palate5. In this context, nursing professionals have a fundamental role3.

The continuous demands imposed on the caregiver can be a burden and generate changes in their daily life, compromising their perception of quality of life5.

The rehabilitative treatment of cleft lip and palate comprises numerous interventions, which are initially related to feeding and, later, to functional implications, dental management, craniofacial growth, and speech disorders, in addition to aesthetics1.

Guidance for parents and caregivers is essential and must include: feeding, hygiene, and comfort techniques; and, in the next moment, the pre and postoperative care of the restorative surgeries1),(5)-(7.

Quality of life assessment can help healthcare teams to improve care services and planning of clinical interventions, favoring the development of innovative health promotion activities8. Caregivers may face health issues, reduction in quality of life and overload, which can compromise the assistance provided and lead the caregiver to a state of illness9.

Educational interventions focused on guidance for family caregivers and promotion of their well-being require special attention from health professionals. Nurses play a key role in planning, implementing and evaluating educational interventions for caregivers, which provide guidelines for care according to individual needs, aiming at continuity in home care, and guidance on the adaptations and accessibility of residences10. Knowing the reality of patients and their relatives and understanding their questions, longings, and experiences is indispensable for an adequate care5),(11.

Considering that caring for a child with cleft lip and palate can lead to a worse perception of quality of life12, and that the burden can negatively influence this perception, it is essential to assess the correlation between these variables. A situational analysis allows planning and implementing actions to minimize the burden, favoring the health and well-being of caregivers. In this context, a research question is proposed: is there a correlation between the burden and the perception of quality of life of family caregivers of infants with cleft lip and palate? The hypothesis is that there is a correlation between measures of quality of life and burden in these caregivers.

Thus, the objectives of this study were: 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 socio-demographic variables.

METHOD

STUDY DESIGN

This is an exploratory, cross-sectional study carried out in an institution specialized in the treatment and rehabilitation of patients with craniofacial anomalies and related syndromes.

DATA COLLECTION

Considering the mean number of first repair surgeries of the cleft lip and palate (13 per month) and the period stipulated for the data collection, the consecutive non-probability sampling consisted of 77 family caregivers. Inclusion criteria were: being 18 years of age and older, being literate and the primary caregiver of infants aged 3 to 6 months with cleft lip and palate1) who were not operated and had no neurological disorders. Family caregivers who reported using psychoactive drugs were excluded. Data was collected from March to September 2015, exclusively by the researcher, through an individual interview, which occurred in a private room in the outpatient clinic of the hospital, before the nursing consultation, with an estimated time of 15-20 minutes. Medical records were consulted to verify the inclusion criteria before the interview.

Three data collection instruments were used: a sociodemographic characterization form, the World Health Organization Quality of Life - BREF (WHOQOL - BREF)13) and the Burden Interview Scale14.

The sociodemographic characterization of the family caregiver considered the age, gender, level of education, degree of kinship with the baby, family income and city where he/she lives.

The perception of quality of life was evaluated through the World Health Organization Quality of Life - Bref (WHOQOL - Bref)13. The questionnaire contains 26 questions, two related to general quality of life and 24 distributed in four domains: Physical Health, Psychological, Social Relationships and Environment. Each domain has a score ranging from zero to 100, in which zero corresponds to the worst quality of life, and 100 to the best quality of life13.

The perception of burden of family caregivers was evaluated by the Portuguese version of the Burden Interview Scale14. The scale is composed of 22 items, each with a five-point ordinal scale (from zero to four). The total scale score can range from zero to 88. Higher the scores indicate greater the burden14.

DATA ANALYSIS

Data were analyzed using the software IBM Statistical Package for Social Sciences (SPSS), version 21.0 for Windows. The Pearson’s correlation test was used to verify the correlations between the measures of interest (quality of life, burden, age and family income).

The linear correlation coefficients between the variables were classified in three levels: values smaller than 0.30 indicate weak correlation and little clinical applicability, even when statistically significant; values between 0.30 and 0.50 indicate moderate correlation, and above 0.50, strong correlation15.

The mean scores of the WHOQOL - BREF domains were compared using the Student’s t-test (according to the city where they lived) and the ANOVA (level of education). The significance level was set at 0.05.

ETHICAL ASPECTS

The study began after obtaining approval from the Research Ethics Committee of the proposing institution, under protocol no. 960.936/2015, and agreement of the cooperating institution, under protocol no. 976.019/2015. The study was conducted according to the ethical standards required and in accordance with Resolution 466/2012 of the National Health Council.

Individuals who met the inclusion criteria were invited to participate in the research, and the objectives of the research were clarified in verbal and written form. All participants formalized their participation signing the Informed Consent Form.

RESULTS

The participants of the study were 77 family caregivers, of which 74 (96.1%) were mothers. Participants had a mean age of 28.8 years (ranging from 18 to 48), secondary education (27.3%; n=21), and were predominantly from the state of São Paulo (54.5%; n=42) (Table 1).

Table 1 Socio-demographic characterization of family caregivers of infants with cleft lip and palate - Bauru, SP, Brazil, 2015. 

Variables Mean (SD) or % (N)
Age (years)/Mean (SD) 28.8 (7.1)
Level of education
Complete elementary education 6.5 (05)
Incomplete elementary education 18.2 (14)
Complete secondary education 27.3 (21)
Incomplete secondary education 18.2 (14)
Complete higher education 20.8 (16)
Incomplete higher education 9.0 (07)
Kinship
Mother 96.1 (74)
Other relatives 3.9 (03)
Family income in MW*/Mean (SD) 4.26 (5.45)
Up to 2 MW 42.8 (33)
+ 2 to 4 MW 32.5 (25)
+ 4 to 9 MW 14.3 (11)
+ 9 to 15 MW 5.2 (4)
+ 15 MW 5.2 (4)
Place of living
State of São Paulo 54.5 (42)
Other states 45.5 (35)

*MW = Minimum wage (788.00 BRL, valid in the period of data collection).

The correlation between the measures of quality of life and the measures of burden showed an inverse association between the variables, indicating that, with the reduction of burden, the quality of life increased or vice versa. This correlation was observed in all quality of life domains: Physical Health (r=-0.283; p=0.013), Psychological (r=-0.498; p<0.001), Social Relationships (r=-0.434; p<0.001) and Environment (r=-0.344; p=0.002). The intensity of the correlation obtained was weak for the Physical Health domain, and moderate for the Psychological, Social Relationships and Environment domains. Regarding family income, there was a positive correlation of moderate intensity only with the Environment domain (r=0.419; p<0.001) (Table 2).

Table 2 Correlations between quality of life (WHOQOL - BREF domains) and burden (Burden Interview Scale), age and income of family caregivers of infants with cleft lip and palate - Bauru, SP, Brazil, 2015. 

Domains / Variables r p*
Domains / Burden
Physical HHhealth -0.283 0.013*
Psychological -0.498 <0.001*
Social Relationships -0.434 <0.001*
Environment -0.344 0.002*
Domains / Age (years)
Physical Health 0.094 0.414
Psychological -0.004 0.971
Social Relationships -0.029 0.804
Environment 0.132 0.253
Domains / Family income
Physical Health -0.007 0.954
Psychological -0.082 0.483
Social Relationships -0.125 0.280
Environment 0.419 <0.001*

*Pearson’s correlation coefficient.

There was no statistically significant relationship between the domains: Physical Health (p=0.78), Psychological (p=0.64), Social Relationships (p=0.89) and Environment (p=0.58) and the caregivers’ place of living. Regarding the level of education, there was a difference only in the Environment Domain (p=0.019), with mean values ranging from 56.5 (SD±16.7) to 72.8 (SD±8.8) for those caregivers who had incomplete secondary education and complete higher education, respectively.

DISCUSSION

The results evidenced that the mother is the main provider of care, which is in accordance with the literature2),(5)-(6),(11),(16. This demonstrates the importance of the family environment in the process of rehabilitation of the individual born with a malformation, since the perception of this process and the coping capacity are influenced by parents’ expectations, attitudes and support2. Personal coping strategies and the history of the relationship between the patient and the caregiver should be considered17.

The mean age found was 28 years, therefore the caregivers were young. Due to the several care measures required by infants with cleft lip and palate, family members have to exercise responsible roles, even at a young age. A stronger mother-child bond18 may also justify this finding.

Regarding level of education, 45.5% (35) of the participants attended secondary school and 27.3% (21) concluded it. The prevalence of secondary education and low family income are corroborated in the literature2),(5)-(6),(11),(16.

Low levels of education and unfavorable socioeconomic contexts can lead to caregiver overload and predispose them to stress5.

The correlation between quality of life and sociodemographic variables showed that caregivers who had incomplete secondary education and higher education presented a better perception of their quality of life in the Environment Domain. This domain also includes feelings of security, the home environment, availability and quality of health care, new information and skills and opportunities to acquire them, among other aspects13.

The majority of participants reported a family income of up to two minimum wage. Studies performed at the same institution showed that most families belonged to the low11),(19 and lower middle classes, reflecting the Brazilian reality2.

Most caregivers were from cities in São Paulo state. This result is probably related to the location of the institution in that state. It is a public hospital recognized by the World Health Organization as a center of excellence for the treatment of craniofacial anomalies and related syndromes and a national and international reference1),(20.

The correlation between the measures of quality of life (WHOQOL - Bref domains) and the measures of burden (Burden Interview Scale) showed an inverse relationship between the variables, indicating that, with the reduction of the burden, the quality of life increased or vice versa, in all areas of the WHOQOL - BREF. The negative correlation with the burden was stronger in the Psychological domain than in the other domains, that is, this correlation was more evident in the Psychological domain and less evident in the Physical Health domain. However, all the four quality of life domains were correlated with burden.

A comparative study on the quality of life of families with children born with cleft lip and palate before and after the surgical treatment showed that caring for children with cleft lip and palate significantly reduces the quality of life of family caregivers in all the domains, before the surgery. The most pronounced impacts, which most affected quality of life, were in the financial and social domains. Caregivers of children with cleft lip and palate need support from society, health professionals, friends and relatives12.

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 programs21.

The family caregiver is usually unprepared for the care and its inherent burden. It is commonly a new and sudden situation that requires some preparation. Accepting, supporting and clarifying questions are essential for the caregiver to acquire new knowledge and skills22.

Counseling sessions should be organized soon after birth to improve the quality of life of family caregivers. This will provide an opportunity to discuss the plans established and to support their care23. Caring for a loved one can be more meaningful and rewarding than the social losses caused by the overburden. However, caring for a dependent family member at home can bring changes in the physical, psychological and social aspects of the caregiver18.

A research revealed a significant association between caregiver overload and quality of life among family caregivers of patients with schizophrenia and pointed out predictors of quality of life, such as overburden, social support and professional support24.

Therefore, a better support leads to a faster and better adaptation of the family of the child with cleft lip and palate3. Including the strengthening of the bond between mother and child19 to these factors, it is inferred that the findings of the present study explain the greater correlation with the Psychological domain and the smaller correlation with the Physical Health domain, as well as the inverse relationship between burden and quality of life.

The explanatory factors associated with increased caregiver burden and poorer perception of quality of life are relevant for identifying families at risk and for developing interventions25. Parents, like many other caregivers, are very dedicated to provide well-being to their children, but their own well-being and health are often neglected25.

Regarding age, negative correlations were identified in a study with family caregivers of individuals with spinal cord injury. A worse health-related quality of life was associated with age, that is, the older the family caregiver, the worse their quality of life10.

In contrast, a study with family caregivers of people with special needs pointed out that the age of the caregiver did not affect quality of life. The primary caregiver is the person who spends more time caring for the person with special needs. Therefore, this caregiver is subject to physical, psychological or emotional fatigue related to their overburden26.

Rarer and more complex diseases require more specialist advice. Lack of information about the patient and resource deficits in some centers may have adverse impacts on the patients’ quality of life and on the heavy economic and social burden borne by patients and their families27.

Overburden can be associated with physical, emotional, social and financial suffering5. Programs to prevent overburden and negative emotional impact can positively affect the health and quality of life of dependent individuals and their caregivers. Educational interventions for preparing caregivers and promoting well-being deserve special attention from health professionals. In the care context, nurses are responsible for planning care, considering the individual needs of each patient and the family caregiver. This includes the preparation of educational interventions aiming at the continuity of care10.

It is believed that the present study contributed to the evaluation of quality of life and overburden of family caregivers of infants with cleft lip and palate. This will allow the multidisciplinary team to plan and implement actions that address the self-care and quality of life of these informal caregivers, since patients, family members and caregivers must be integrated in the same care context.

Cleft lip and palate are among the most frequent congenital malformations, and healthcare guidance is fundamental for the construction of knowledge among mothers28. Therefore, identifying the areas with the greatest deficiency allows for a review of the intervention proposals, with the aim of improving the quality of care and, consequently, promoting health29.

It is important to conduct periodic evaluations of the quality of life and the burden of family caregivers of infants with cleft lip and palate, with the purpose of reducing their overburden and improving their quality of life.

Thus, the hypothesis of the present study was confirmed. It is possible to affirm, according to the results, that there is an inverse correlation between measures of quality of life and burden of family caregivers of infants with cleft lip and palate.

CONCLUSION

The study found positive results regarding quality of life and burden of family caregivers of infants with non-operated cleft lip and palate. However, the age criteria and the research within a single institution can be considered limitations in the present study, since they do not allow the generalization of the results. In this context, multicenter studies with caregiver of children with cleft lip and palate in different age groups should be conducted.

The evaluation of quality of life and burden of family caregivers of infants with cleft lip and palate showed an inverse correlation between quality of life and burden, i.e., 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 of the quality of life in the Environment domain.

REFERENCES

1 Freitas JAS, Neves LT, Almeida ALPF, Garib DG, Trindade-Suedam IK, Yaedú RYF, 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. [ Links ]

2 Graciano MIG, Galvão KA. Modelos e arranjos familiares: um estudo na área da fissura labiopalatina na realidade brasileira. Arq Ciênc Saúde. 2014;21(2):56-63. [ Links ]

3 Martins TU, Zerbetto SR, Dupas G. Empowerment mechanisms used by the family of a child with cleft li and palate to a resilient path. Ciênc Cuid Saúde. 2013;12(3):492-9. [ Links ]

4 Beluci ML, Barros SP, Borgo HC, Fontes CMB, Arena EP. Postsurgical alveolar bone graft patients: elaboration and application of a data-gathering instrument for nutrition and nursing. Cleft Palate Craniofac J. 2014;51(2):172-7. [ Links ]

5 Trettene AS, Turbiani ACA, Razera APR, Souza NFH, Turbiani DR, Silva JSG. Stress and overload in informative care of children with isolated Robin Sequence. Rev Enferm UFPE On Line. 2017;11(8):3013-20. [ Links ]

6 Trettene AS, Maximiano TO, Beraldo CC, Mendonça JSC, Luiz AG, Costa B. Breastfeeding in infants with labiopalatine cleft. Rev Enferm UFPE On Line. 2018;12(5):1390-6. [ Links ]

7 Santos KCR, Bohn MLS, Motta GCP, Silva EF, Lorenzini E. Care to children with cleft lip-palate: an integrative review. J Res Fundam Care Online. 2014;6(1):425-32. [ Links ]

8 Herkrath APCQ, Herkrath FJ, Rebelo MAB, Vettore MV. Measurement of health-related and oral health-related quality of life among individuals with nonsyndromic orofacial clefts: a systematic review and meta-analysis. Cleft Palate Craniofac J. 2015;52(2)157-72. [ Links ]

9 Sequeira CAC. Adaptation and validation of Zarit Burden Interview Scale. Rev Enferm Ref. 2010;2(12):9-16. [ Links ]

10 Nogueira PC, Rabeh SAN, Caliri MHL, Dantas RAS. Health-Related quality of life among caregivers of individuals with spinal cord injury. J Neurosci Nurs. 2016;48(1):28-34. [ Links ]

11 Trettene AS, Razera APR, Maximiano TO, Luiz AG, Dalben GS, Gomide MR. Doubts of caregivers of children with cleft lip and palate on postoperative care after cheiloplasty and palatoplasty. Rev Esc Enferm USP. 2014;48(6):993-8. DOI: http://dx.doi.org/10.1590/S0080-623420140000700005 [ Links ]

12 Emeka CI, Adeyemo WL, Ladeinde AL, Butali A. A comparative study of quality of life of families with children born with cleft lip and/or palate before and after surgical treatment. J Korean Assoc Oral Maxillofac Surg. 2017;43(4):247-55. [ Links ]

13 Fleck MPA, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, et al. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida "WHOQOL-bref". Rev Saúde Pública. 2000;34(2):178-83. [ Links ]

14 Scazufca M. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Rev Bras Psiquiatr. 2002;24(1):12-7. [ Links ]

15 Ajzen I, Fishbein M. Understanding attitudes and predicting social behavior. New Jersey: Prentice-Hall; 1980. [ Links ]

16 Trettene AS, Fontes CMB, Razera APR, Gomide MR. Impact of promoting self-care in nursing workload. Rev Esc Enferm USP. 2016;50(4):633-9. DOI: http://dx.doi.org/10.1590/S0080-623420160000500014 [ Links ]

17 Amendola F, Oliveira MAC, Alvarenga MRM. Influence of social support on the quality of life of family caregivers while caring for people with dependence. Rev Esc Enferm USP. 2011;45(4):884-9. DOI: http://dx.doi.org/10.1590/S0080-62342011000400013 [ Links ]

18 Nardi CGA, Rodrigues OMPR, Melchiori LE, Salgado MH, Tavano LD. Bebês com Sequência de Pierre Robin: saúde mental materna e interação mãe-bebê. Estud Psicol. 2015;32(1):129-40. [ Links ]

19 Pereira PJS, Souza NFH, Almeida RJ, Menezes DC, Bom GC, Trettene AS. Nursing diagnoses and interventions in children submitted to cochlear implantation. Rev Esc Enferm USP. 2017;51:e03238. DOI: http://dx.doi.org/10.1590/s1980-220x2016045203238 [ Links ]

20 Trindade-Suedam IK, Von Kostrisch LM, Pimenta LAF, Negrato CA, Franzolin SB, Trindade Júnior AS. Diabetes mellitus e uso de drogas durante a gravidez e o risco de fissuras orofaciais e anomalias relacionadas. Rev Latino Am Enfermagem. 2016;24:e2701. DOI: 10.1590/1518-8345.0815.2701 [ Links ]

21 Hlongwa P, Rispel LC. "People look and ask lots of questions": caregivers' perceptions of healthcare provision and support for children born with cleft lip and palate. BMC Public Health. 2018;18:506. [ Links ]

22 Nogueira PC, Rabeh SAN, Caliri MHL, Dantas RAS, Haas VJ. Burden of care and its impact on health-related quality of life of caregivers of individuals with spinal cord injury. Rev Latino Am Enfermagem. 2012;20(6):1048-56. DOI: http://dx.doi.org/10.1590/S0104-11692012000600006 [ Links ]

23 Awoyale T, Onajole AT, Ogunnowo BE, Adeyemo WL, Wanyonyi KL, Butali A. Quality of life of family caregivers of children with orofacial clefts in Nigeria: a mixed-method study. Oral Dis. 2016;22(2):116-22. [ Links ]

24 Ribé JM, Salamero M, Pérez-Testor C, Mercadal J, Aguilera C, Cleris M. Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support. Int J Psychiatry Clin Pract. 2018;22(1):25-33. [ Links ]

25 Wu MS, Hamblin R, Nadeau J, et al. Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment. Compr Psychiatry. 2018;80:46-56. [ Links ]

26 Braccialli LMP, Bagagi PS, Sankako AN, Araújo RCT. Qualidade de vida de cuidadores de pessoas com necessidades especiais. Rev Bras Educ Esp. 2012;18(1):113-26. [ Links ]

27 Friedlander L, Choquet R, Galliani E, Chalendar M, Messiaen C, Ruel A, et al. Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study. Orphanet J Rare Dis. 2017;12(1):94. [ Links ]

28 Silva LS, Silva RF, Leandro TP, Macedo FRM, Souza ALT, Souza BOP, Soares EA. Orientações recebidas pelas mães de crianças com fissura labiopalatina. Arq Ciênc Saúde. 2015;22(2):88-93. [ Links ]

29 Beluci ML, Genaro KF. Quality of life of individuals with cleft lip and palate pre- and post-surgical correction of dentofacial deformity. Rev Esc Enferm USP. 2016;50(2):216-21. DOI: 10.1590/S0080-623420160000200006 [ Links ]

*Extracted from the Post-doctoral study: “Qualidade de vida e sobrecarga de cuidadores informais de bebês com fissura labiopalatina”, Programa de Pós-Doutorado, Escola de Enfermagem de Ribeirão Preto, Universidade de São Paulo, 2016.

Received: January 16, 2018; Accepted: October 09, 2018

Corresponding author: Marli Luiz Beluci Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto. Av. Bandeirantes, 3900 CEP 14040-902 - Ribeirão Preto, SP, Brazil mlbeluci@hotmail.com

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