Abstract

The aim was to evaluate the oral health care of children/adolescents with Cerebral Palsy (CP) according to severity through the perceptions of parents/caregivers. A case series study was conducted at health services in the state of Pernambuco, Brazil with 94 mothers/caregivers of subjects with CP from 5 and 18 years old. Sociodemographic factors, oral health care and use of dental services (DS) were evaluated. The Gross Motor Function Classification System showed 67% with severe motor impairment. Subjects with severe CP had significantly higher frequencies of belonging to families with lower income (89%, p < 0.001), living in the interior (44%, p < 0.005), having transportation difficulties (60%, p = 0.04), difficulty regarding access to DS (88%, p = 0.009) and a greater need for oral hygiene (67%, p = 0.008), which was performed exclusively by the caregiver (94%, p < 0.001). Despite identified access barriers, dental care was facilitated for those with severe CP, early DS use, but low availability of dentists and low degree of humanization were cited as major problems. These results reveal problems related to daily oral health care, family living context, institutional support and quality of DS that should be addressed in comprehensive, inclusive, equitable social and economic public policies.

Key words
Cerebral palsy; Child; Adolescent; Dental care for disabled; Social conditions

Introduction

Cerebral palsy (CP) is a non-progressive posture and movement disorder caused by damage to the central nervous system and is the most common neuromotor disorder in children. The clinical manifestations of the disorder vary depending on the extent of the damage and the affected neurological area¹1 Dougherty NJ. A review of cerebral palsy for the oral health professional. Dent Clin N Am 2009; 53(2):329-338..

Both national and international studies have characterized the oral health status of individuals with CP²2 Du RY, Mcgrath C, Yiu CK, King NM. Oral health in preschool children with cerebral palsy: a case-control community-based study. Internat J Paediatr Dent 2010; 20(5):330-335.

3 Jan BM, Jan MM. Dental health of children with cerebral palsy. Neurosciences 2016; 21(4):314-318.

4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.

5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^-66 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243, with reports of greater frequencies of caries experience, periodontal disease, malocclusion and bruxism as well as a greater quantity of dental biofilm²2 Du RY, Mcgrath C, Yiu CK, King NM. Oral health in preschool children with cerebral palsy: a case-control community-based study. Internat J Paediatr Dent 2010; 20(5):330-335. in this population with special needs⁷7 Lemos ACO, Katz CRT. Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev CEFAC 2012; 14(5):861-871.^,88 Lemos ACO, Katz CRT. Cárie dentária em crianças com paralisia cerebral e sua relação com a sobrecarga dos cuidadores. Arq Odontol 2016; 52(2):100-110., which can increase with the age of the child and vary depending on the severity of the disorder.⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,99 Sedky NA. Assessment of oral and dental health status in children with cerebral palsy: an exploratory study. Int J Health Sci 2018; 12(1):4-14. The vulnerability to caries is associated with the greater exposure to sociodemographic, family, clinical and behavioral risk factors in this population.⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,1010 Camargo MAF, Frias AC, Antunes JLF. The incidence of dental caries in children and adolescents who have cerebral palsy and are participating in a dental program in Brazil. Spec Care Dentist 2011; 31(6):2010-2215. Studies report that children with CP submitted to social deprivation are those with a greater occurrence of caries.⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,1010 Camargo MAF, Frias AC, Antunes JLF. The incidence of dental caries in children and adolescents who have cerebral palsy and are participating in a dental program in Brazil. Spec Care Dentist 2011; 31(6):2010-2215.^,1111 Guerreiro PO, Garcias GL. Diagnóstico das condições de saúde bucal em portadores de paralisia cerebral do município de Pelotas, Rio Grande do Sul, Brasil. Cienc Saude Colet 2009;14(5):1939-1946. Proximal risk factors include difficulty regarding activities of self-care in daily living, such as eating, walking, bathing, dressing, talking and brushing one’s teeth²2 Du RY, Mcgrath C, Yiu CK, King NM. Oral health in preschool children with cerebral palsy: a case-control community-based study. Internat J Paediatr Dent 2010; 20(5):330-335.

3 Jan BM, Jan MM. Dental health of children with cerebral palsy. Neurosciences 2016; 21(4):314-318.^-44 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.. Moreover, the types of foods consumed⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,77 Lemos ACO, Katz CRT. Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev CEFAC 2012; 14(5):861-871. and abnormal movements of the facial muscles favor the prolonged retention of foods in the oral cavity⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,77 Lemos ACO, Katz CRT. Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev CEFAC 2012; 14(5):861-871..

Despite the recognition of the oral health needs of patients with CP⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^,66 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243, which require specific public policies¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013., there are reports of barriers to the use of dental services⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^,1313 Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, Mcquiston J, Mclaughlin S, Govind A, Sadof M, Huntington NL. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatr Dent 2011; 33(1):29-36.

14 Academy of General Dentistry. Barriers and solutions to accessing care - to serve and protect the oral health of the public. 2012. [acessado 2016 Abr 23]. Disponível em: https://www.agd.org/docs/default-source/advocacy-papers/agd-white-paper-barriers-to-care.pdf?sfvrsn=2
https://www.agd.org/docs/default-source/... ^-1515 Gomes AMM, Thomaz EBAF, Alves MTSSDB, Silva AAM, Silva RA. Fatores associados ao uso dos serviços de saúde bucal: estudo de base populacional em municípios do Maranhão, Brasil. Cien Saude Colet 2014; 19(2):629-640.. Such barriers involve not only the availability, proximity and accessibility of dental services, but also the attitudes and beliefs of caregivers, dentists and individuals with disabilities¹³13 Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, Mcquiston J, Mclaughlin S, Govind A, Sadof M, Huntington NL. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatr Dent 2011; 33(1):29-36.^,1414 Academy of General Dentistry. Barriers and solutions to accessing care - to serve and protect the oral health of the public. 2012. [acessado 2016 Abr 23]. Disponível em: https://www.agd.org/docs/default-source/advocacy-papers/agd-white-paper-barriers-to-care.pdf?sfvrsn=2
https://www.agd.org/docs/default-source/... ^,1616 Pereira LMF, Caribé D, Guimarães P, Matsuda D. Acessibilidade e crianças com paralisia cerebral: a visão do cuidador primário. Fisioter Mov 2011; 24(2):299-306..

In Brazil, although the implementation of the National Oral Health Policy in 2004 enabled advances in the structuring of oral health care on all levels and included the unprecedented assurance of comprehensive care for patients with special needs, difficulties persist in the access to and offer of comprehensive, resolutive care¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013.^,1717 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,1818 Brasil. Ministério da Saúde (MS). Passo a passo das ações da Política Nacional de Saúde Bucal. Brasília: MS; 2016. [acessado 2017 Out 23]. Disponível em: http://189.28.128.100/dab/docs/portaldab/documentos/passo_a_passo_ceo.pdf
http://189.28.128.100/dab/docs/portaldab... . Children and adolescents with special needs repeatedly encounter problems, such as the low availability of trained dentists, scheduling delays and the need for general anesthesia⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599. Moreover, the fragile communication among levels of care compromises the comprehensiveness and intersectoral nature of actions necessary for oral health promotion in these patients, which constitutes another barrier regarding access to care¹⁰10 Camargo MAF, Frias AC, Antunes JLF. The incidence of dental caries in children and adolescents who have cerebral palsy and are participating in a dental program in Brazil. Spec Care Dentist 2011; 31(6):2010-2215.^,1717 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011..

Despite the growing production of studies addressing the need for oral health care on the part of patients with special needs⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,1919 Curi DSC, Figueiredo ACL, Jamelli SR. Fatores associados à utilização dos serviços de saúde bucal pela população pediátrica: uma revisão integrativa. Cien Saude Colet 2018; 23(5):1561-1576., such production remains insufficient⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,2020 Souza SP, Silva A, Guaré RO, Santos MTBR. Qualidade de vida do cuidador e saúde bucal do indivíduo com necessidade especial. Pesq Bras Odontoped Clin Integr 2011; 11(2):257-262.^,2121 El Ashiry EA, Alaki SM, Nouri SM. Oral Health Quality of Life in Children with Cerebral Palsy: Parental Perceptions. J Clin Pediatr Dent 2016; 40(5):375-387. There is a gap in knowledge regarding the perceptions of parents and caregivers regarding the oral health care that should be offered to children and adolescents with CP⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^,66 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,2020 Souza SP, Silva A, Guaré RO, Santos MTBR. Qualidade de vida do cuidador e saúde bucal do indivíduo com necessidade especial. Pesq Bras Odontoped Clin Integr 2011; 11(2):257-262. on the different levels of health care that provide services for this population.

Therefore, the aim of the present study was to evaluate the oral health care of children and adolescents with cerebral palsy who use services specialized in the treatment of patients with special needs through the perceptions of mothers and caregivers.

Methods

An observational, case series study was conducted at three healthcare services of different sizes that offer care to children and adolescents with CP. This study was conducted in the city of Recife (capital of the state of Pernambuco, Brazil) at the pediatric gastroenterology and rehabilitation (physical therapy, speech therapy and occupational therapy) services of the hospital affiliated with the Federal University of Pernambuco, the physical therapy sector of the Pepita Duran Multiservice Clinic and the physical therapy sector of the Perrone Foundation in the neighboring city of Jaboatão dos Guararapes. All parents/caregivers of children and adolescents with CP who utilized these services between January and August 2017 were invited to participate in the study.

The inclusion criteria were being a parent/caregiver of a child or adolescent with a clinical diagnosis of CP between five and 18 years of age with mild to severe motor impairment based on the Gross Motor Function Classification System (GMFCS). Parents/caregivers of children and adolescents with CP who had a congenital malformation not related to a chromosome disease, those with severe hearing or vision impairment and those with cognitive deficit were excluded from the study. After the application of these eligibility criteria, the sample was composed of 94 individuals.

The GMFCS is widely used to classify the degree of motor impairment in children and adolescents with CP on five levels (I-II: mild; III: moderate; and IV-V: severe) based on the child’s/adolescent’s disabilities and level of dependence²²22 Hiratuka E, Matsukura TS, Pfeifer LI. Adaptação transcultural para o Brasil do sistema de classificação da função motora grossa (GMFCS). Rev Bras Fisioter 2010; 14(6):537-544..

Data collection involved interviews with the parents/caregivers using a questionnaire designed by the researcher and tested previously. The majority of questions were closed-ended and pre-coded. Some questions were open-ended and addressed the perceptions of parents/caregivers with regards to the oral health care of the child or adolescent.

The parents/caregivers were contacted upon bringing their children and adolescents with CP to the aforementioned services. Those who agreed to participate signed a statement of informed consent. The interviews were held in a reserved space at the service with only the parent/caregiver and researcher present to ensure the confidentiality of the data.

Data were collected on socioeconomic and demographic characteristics of the participant, the diagnosis of motor impairment, the use of anticonvulsants, eating habits, oral hygiene habits, child’s/adolescent’s history of access to dental care and the participant’s opinion regarding her/his own oral health and the oral health of the child or adolescent.

Descriptive analysis (absolute and relative frequencies) was performed. Either the chi-square test with the Yates correction for binary tables or Fisher’s exact test (when appropriate) was employed to test associations between CP severity and socioeconomic/demographic characteristics of the family, oral hygiene habits and dental care. For this analysis, CP severity was dichotomized as mild/moderate (levels I, II and II) or severe (levels IV and V). A p-value < 0.05 was considered indicative of statistical significance.

This study received approval from the Human Research Ethics Committee of the Center for Health Sciences of the Federal University of Pernambuco. Children/adolescents with treatment needs were sent to the special needs dental clinic of the Department of General and Preventive Dentistry of the university.

Results

Ninety-four parents/caregivers of children and adolescents with CP participated in the present study. The main caregiver was predominantly the mother (87.2%), with a slight predomination of the age group 40 years or older (38.2%). Approximately two-thirds had nine or more years of schooling (63.8%) and 77.7% received up to two times the Brazilian monthly minimum wage. Regarding the degree of motor impairment among the children/adolescents evaluated using the GMFCS, 31 (33%) had mild impairment (levels I, II and III) and 63 (67%) had severe impairment (levels IV and V). The majority (67%) was between five and nine years of age; 64.9% were boys and 66% were residents of the city of Recife and the metropolitan region. Regarding dental care, 8.5% had never been to the dentist. Among those that had been to a dentist, the first visit occurred between one and five years of age. Among the children/adolescents with severe CP, significantly higher percentages were found of a low income, residence outside metropolitan Recife, a younger mother/caregiver, the use of an anticonvulsant and feeding through a tube/gastrostomy with liquids and pasty foods (Table 1).

Table 2 displays the oral hygiene characteristics of the sample. Oral hygiene was performed significantly more often by the caregiver alone, who experienced difficulty due to the non-cooperation of the child/biting on the toothbrush. The use of moistened gauze/cloth to clean the teeth and the non-use of dental floss were frequent (Table 2).

Table 3 displays the perceptions of the parents/caregivers regarding their own oral health and the oral health of the child/adolescent. Significantly higher percentages of parents/caregivers perceived a greater need for oral health care for the child/adolescent. The majority (94.6%) stated that oral problems could have consequences, with significantly higher proportions of parents/caregivers of children/adolescents with severe CP citing toothache (p = 0.03) as well as a negative impact on dental esthetics (p = 0.01) and the behavior of the child/adolescent (p = 0.008).

Table 4 displays the reports of the parents/caregivers regarding access to dental care at some time in the life of the child/adolescent and in the past 12 months. No significant differences were found between the two groups studied (mild/severe motor impairment).

Table 5 displays the difficulties regarding access to oral health care. A significantly larger proportion of parents/caregivers of children/adolescents with severe CP reported difficulties in terms of transportation and access to dental services (p = 0.04 and p = 0.009, respectively).

Discussion

The present study was conducted to investigate the views of mothers and caregivers regarding oral health care for 94 children and adolescents with CP who utilized services directed at patients with special needs as well as identify associations between the severity of CP and socioeconomic/demographic, family and oral health care characteristics.

Among the main findings, a significantly larger number of individuals with severe CP were from families with a less privileged socioeconomic status, resided outside the metropolitan region of the state capital and had no access to dental services. These results are in agreement with data described in previous studies, which reported associations between disabilities and an unfavorable socioeconomic status, especially among individuals with more severe forms of disability²³23 Baltor M, Dupas G. Experience from families of children with cerebral paralysis in context of social vulnerability. Rev Latino-Am Enfermagem 2013; 21(4):8-15.^,2424 Simões CC, Silva L, Santos MR, Misko MD, Bousso RS. A experiência dos pais no cuidado dos filhos com paralisia cerebral. Rev Eletr Enf 2013; 15(1):138-145..

According to a study conducted by the Brazilian Institute of Geography and Statistics using data collected in 2010, 45.6 million Brazilians have at least one disability. Among those aged 10 years or older, 46.4% earn only up to the Brazilian monthly minimum wage. In the state of Pernambuco, this number is more than 50 thousand individuals with motor disability living in a low-income situation. The study also reveals that most individuals with disability have lower levels of schooling and academic performance²⁵25 Instituto Brasileiro de Geografia e Estatística (IBGE). Censo Demográfico 2010. Características gerais da população, religião e pessoas com deficiência. Rio de Janeiro: IBGE, 2012..

Caring for a child with a disability increases the demand for resources, as expenses are three times higher compared to those for children with typical development¹⁶16 Pereira LMF, Caribé D, Guimarães P, Matsuda D. Acessibilidade e crianças com paralisia cerebral: a visão do cuidador primário. Fisioter Mov 2011; 24(2):299-306.^,2323 Baltor M, Dupas G. Experience from families of children with cerebral paralysis in context of social vulnerability. Rev Latino-Am Enfermagem 2013; 21(4):8-15.. In the present study, most participants reported receiving benefits, which given individuals with disability a minimum capacity to lead a decent life²⁶26 Brasil. Ministério da Saúde (MS). Guia prático do cuidador. Brasília: MS; 2008.^,2727 Brasil. Secretaria de Direitos Humanos da Presidência da República (SDH), Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência (SNPD). Viver sem Limite - Plano Nacional dos Direitos da Pessoa com Deficiência. Brasília: SDH, SNPD; 2013.. However, the mothers of disabled children/adolescents belonging to lower social strata often leave their jobs to perform the daily care of their children¹⁷17 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,2020 Souza SP, Silva A, Guaré RO, Santos MTBR. Qualidade de vida do cuidador e saúde bucal do indivíduo com necessidade especial. Pesq Bras Odontoped Clin Integr 2011; 11(2):257-262.^,2424 Simões CC, Silva L, Santos MR, Misko MD, Bousso RS. A experiência dos pais no cuidado dos filhos com paralisia cerebral. Rev Eletr Enf 2013; 15(1):138-145.. Thus, the precarious living conditions seen among mothers/caregivers of the children/adolescents, especially those with more severe CP, can exert a strong negative impact on the oral health care of these children/adolescents as well as the quality of life²⁸28 Braccialli LMP, Bagagi PS, Sankako AN, Araújo RCT. Qualidade de vida de cuidadores de pessoas com necessidades especiais. Rev Bras Educ Espec 2012; 18(1):113-126. of both the caregiver and child/adolescent, as perceived by the participants of the present study.

The mothers/caregivers reported dependence regarding daily oral health care as well as a greater need for oral hygiene, especially among the children/adolescents with more severe motor impairment. Previous studies report that individuals with special needs are highly dependent upon a caregiver for the performance of activities of daily living, including oral hygiene²⁹29 Campanaro M, Huebner CE, Davis BE. Facilitators and barriers to twice daily tooth brushing among children with special health care needs. Spec Care Dentist 2014; 34(4):185-192.^,3030 Nasiloski KS, Silveira ER, César Neto JB, Schardosim LR. Avaliação das condições periodontais e de higiene bucal em escolares com transtornos neuropsicomotores. Rev Odontol UNESP 2015; 44(2):103-107., which places a burden on caregivers and, consequently, the postponement or forgetting of oral hygiene practices⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,2929 Campanaro M, Huebner CE, Davis BE. Facilitators and barriers to twice daily tooth brushing among children with special health care needs. Spec Care Dentist 2014; 34(4):185-192.. Moreover, caregivers face a set of problems on a daily basis, such as fatigue, sleep disorders, weight loss, hypertension, lower social/emotional wellbeing, isolation, social exclusion, depression, a negative impact on relationships and the loss of life prospects²⁰20 Souza SP, Silva A, Guaré RO, Santos MTBR. Qualidade de vida do cuidador e saúde bucal do indivíduo com necessidade especial. Pesq Bras Odontoped Clin Integr 2011; 11(2):257-262.^,2828 Braccialli LMP, Bagagi PS, Sankako AN, Araújo RCT. Qualidade de vida de cuidadores de pessoas com necessidades especiais. Rev Bras Educ Espec 2012; 18(1):113-126..

These problems can exert a negative impact on the quality of care offered to disabled individuals, affecting the general and oral health of both the care recipient and provider⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,2828 Braccialli LMP, Bagagi PS, Sankako AN, Araújo RCT. Qualidade de vida de cuidadores de pessoas com necessidades especiais. Rev Bras Educ Espec 2012; 18(1):113-126.. There are also problems related to institutional support, which should be primarily directed at family caregivers in situations of social vulnerability¹⁹19 Curi DSC, Figueiredo ACL, Jamelli SR. Fatores associados à utilização dos serviços de saúde bucal pela população pediátrica: uma revisão integrativa. Cien Saude Colet 2018; 23(5):1561-1576.^,2626 Brasil. Ministério da Saúde (MS). Guia prático do cuidador. Brasília: MS; 2008., who require basic health educational interventions as well as psychosocial counseling and social assistance¹⁷17 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,2626 Brasil. Ministério da Saúde (MS). Guia prático do cuidador. Brasília: MS; 2008.^,2727 Brasil. Secretaria de Direitos Humanos da Presidência da República (SDH), Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência (SNPD). Viver sem Limite - Plano Nacional dos Direitos da Pessoa com Deficiência. Brasília: SDH, SNPD; 2013..

Based on the perceptions of the participants, most children/adolescents with severe CP have oral health problems that may be related to the occurrence and severity of caries, although the majority of caregivers reported being the person responsible for the oral hygiene of these subjects, performing it three times a day and being concerned regarding the oral hygiene of this population. The participants reported toothache, compromised esthetics and a change in the child’s behavior as the consequences of dental caries. These results are in agreement with findings described in previous studies reporting that higher levels of caries are concentrated in children/adolescents with CP, who are both biologically and socially vulnerable⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,1010 Camargo MAF, Frias AC, Antunes JLF. The incidence of dental caries in children and adolescents who have cerebral palsy and are participating in a dental program in Brazil. Spec Care Dentist 2011; 31(6):2010-2215.^,1111 Guerreiro PO, Garcias GL. Diagnóstico das condições de saúde bucal em portadores de paralisia cerebral do município de Pelotas, Rio Grande do Sul, Brasil. Cienc Saude Colet 2009;14(5):1939-1946..

Factors on the proximal level involved in the manifestation and severity of caries should be considered in this population. The literature reports the influence of systemic and motor conditions found in patients with special needs, especially those with CP¹1 Dougherty NJ. A review of cerebral palsy for the oral health professional. Dent Clin N Am 2009; 53(2):329-338., on oral hygiene practices²2 Du RY, Mcgrath C, Yiu CK, King NM. Oral health in preschool children with cerebral palsy: a case-control community-based study. Internat J Paediatr Dent 2010; 20(5):330-335.

3 Jan BM, Jan MM. Dental health of children with cerebral palsy. Neurosciences 2016; 21(4):314-318.

4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.

5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^-66 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,99 Sedky NA. Assessment of oral and dental health status in children with cerebral palsy: an exploratory study. Int J Health Sci 2018; 12(1):4-14., such as the type of food (predominantly of a liquid and pasty consistency)⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,77 Lemos ACO, Katz CRT. Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev CEFAC 2012; 14(5):861-871. and frequent use of anticonvulsant medications with a high sucrose content⁶6 Soares J, Volpato LER, Castro PHS, Lambert NA, Borges AH, Carvalhosa AA. Avaliação do conhecimento sobre saúde bucal de pais e cuidadores de crianças e adolescentes com deficiência. J Health Sci Inst 2013; 31(3):239-243^,88 Lemos ACO, Katz CRT. Cárie dentária em crianças com paralisia cerebral e sua relação com a sobrecarga dos cuidadores. Arq Odontol 2016; 52(2):100-110..

In agreement with these findings, aspects reported by the parents/caregivers in the present study, such as a low level of cooperation on the part of the children/adolescents to achieve effective oral hygiene, the prevalence of liquids and pasty foods and the greater use of anticonvulsants by those with severe CP, can increase the risk of caries by favoring the retention of food substrates on dental surfaces⁴4 Huang ST, Hurng SJ, Liu HY, Chen CC, Hu WC, Tauangi YC, Hsiao SY. The oral health status and treatment needs of institutionalized children with cerebral palsy in Taiwan. J Dent Sci 2010; 5(2):75-89.^,77 Lemos ACO, Katz CRT. Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev CEFAC 2012; 14(5):861-871.^,1111 Guerreiro PO, Garcias GL. Diagnóstico das condições de saúde bucal em portadores de paralisia cerebral do município de Pelotas, Rio Grande do Sul, Brasil. Cienc Saude Colet 2009;14(5):1939-1946.. The greater frequencies of toothache perceived in the group with severe CP lend support to these suppositions and may be interpreted as evidence of the accumulation of risk in different domains³¹31 Cascaes AM, Dotto L, Bomfim RA. Trends in the dental surgeon workforce in Brazil 2007-2014: a time series study using data from the National Registry of Health Services. Epidemiol Serv Saude 2018; 27(1):e201723615., with the consequent synergism of risk factors in areas of social vulnerability³¹31 Cascaes AM, Dotto L, Bomfim RA. Trends in the dental surgeon workforce in Brazil 2007-2014: a time series study using data from the National Registry of Health Services. Epidemiol Serv Saude 2018; 27(1):e201723615., which affect children/adolescents at earlier ages from birth onwards.

Despite the need for dental care tailored to their conditions³⁰30 Nasiloski KS, Silveira ER, César Neto JB, Schardosim LR. Avaliação das condições periodontais e de higiene bucal em escolares com transtornos neuropsicomotores. Rev Odontol UNESP 2015; 44(2):103-107., the lower access to dental services for children and adolescents with physical and mental disabilities and problems related to the use of these services remain barriers⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^,1313 Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, Mcquiston J, Mclaughlin S, Govind A, Sadof M, Huntington NL. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatr Dent 2011; 33(1):29-36.^,1616 Pereira LMF, Caribé D, Guimarães P, Matsuda D. Acessibilidade e crianças com paralisia cerebral: a visão do cuidador primário. Fisioter Mov 2011; 24(2):299-306.^,3232 Chi DL, Raklios N. The relationship between body system-based chronic conditions and dental utilization for Medicaid-enrolled children: a retrospective cohort study. BMC Oral Health 2012; 12:28.. These aspects should be analyzed considering disparities of a social and economic order found in both Brazil¹⁵15 Gomes AMM, Thomaz EBAF, Alves MTSSDB, Silva AAM, Silva RA. Fatores associados ao uso dos serviços de saúde bucal: estudo de base populacional em municípios do Maranhão, Brasil. Cien Saude Colet 2014; 19(2):629-640.^,3333 Schwendler A, Faustino-Silva DD, Rocha CF. Saúde Bucal na Ação Programática da Criança: indicadores e metas de um Serviço de Atenção Primária à Saúde. Cienc Saude Colet 2017; 22(1):201-207.^,3434 Macedo AO, Melo MMDC. Factors for the Use of Dental Services Associated with Untreated Caries in Children of a Cohort and the Care Offered in the Primary Health Care of Recife, Brazil. Pesq Bras Odontoped Clin Integr 2018; 18(1):3704. and other countries¹³13 Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, Mcquiston J, Mclaughlin S, Govind A, Sadof M, Huntington NL. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatr Dent 2011; 33(1):29-36.^,1414 Academy of General Dentistry. Barriers and solutions to accessing care - to serve and protect the oral health of the public. 2012. [acessado 2016 Abr 23]. Disponível em: https://www.agd.org/docs/default-source/advocacy-papers/agd-white-paper-barriers-to-care.pdf?sfvrsn=2
https://www.agd.org/docs/default-source/... ^,2323 Baltor M, Dupas G. Experience from families of children with cerebral paralysis in context of social vulnerability. Rev Latino-Am Enfermagem 2013; 21(4):8-15. that hinder access to and the use of oral health services by children and adolescents belonging to less privileged social strata.

Among the barriers regarding access to dental care cited in the present investigation, those referring to transportation difficulties and a lack of accessibility were more frequent in the reports of caregivers of children and adolescents with more severe CP, although this population has the right to adapted transportation of quality and accessibility and lives in places where the state initiative “Pernambuco Conducts – paths to accessibility” has been implemented, which consists of special, free-of-charge services to facilitate the mobility of individuals with higher levels of disability³⁵35 Pernambuco. Lei nº 14.218, de 30 de novembro de 2010. Cria o Programa Pernambuco Conduz, e dá outras providências. [acessado 2017 Out 24]. Disponível em: http://www.peconduz.pe.gov.br/files/LEI%20N%C2%BA%2014.218.pdf
http://www.peconduz.pe.gov.br/files/LEI%... .

The present findings suggest the occurrence of difficulties in fulfilling intersectoral public policies on adapted transportation of quality and accessibility that would facilitate the routine of parents/caregivers and improve the access of individuals with CP to healthcare services, such as going to the dentist. These results are also in agreement with findings described in previous studies reporting that transportation and accessibility to oral health services are the main difficulties faced by mothers of children with CP⁵5 Cardoso AMR, Brito DBA, Alves VF, Padilha WWN. O Acesso ao Cuidado em Saúde Bucal para Crianças com Deficiência Motora: Perspectivas dos Cuidadores. Pesq Bras Odontoped Clin Integr 2011; 11(4):593-599^,1616 Pereira LMF, Caribé D, Guimarães P, Matsuda D. Acessibilidade e crianças com paralisia cerebral: a visão do cuidador primário. Fisioter Mov 2011; 24(2):299-306.^,2424 Simões CC, Silva L, Santos MR, Misko MD, Bousso RS. A experiência dos pais no cuidado dos filhos com paralisia cerebral. Rev Eletr Enf 2013; 15(1):138-145.. However, the majority of participants reported having access to dental services for themselves and their children/adolescents, most of whom used public oral health services, had an early first visit to the dentist (between one and five years of age) and used these services more than once in the previous 12 months. These results are in agreement with data reported in previous studies conducted in primary care, which identified improvements in the access of special needs patients to dental care³⁶36 Lawrence G, Sousa LP, Gonçalves FL, Saintrain MVL, Vieira APGF. Acesso à Saúde Bucal Pública pelo paciente especial: a ótica do Cirurgião-Dentista. Rev Bras Promoç Saude 2014; 27(2):190-197.^,3737 Macêdo G, Lucena E, Lopes I, Batista L. Acesso ao atendimento odontológico dos pacientes especiais: a percepção de cirurgiões-dentistas da atenção básica. RCP 2018; 4(1):67-80.. However, problems that exert an negative influence on the effectiveness of dental care for this population were also found³⁶36 Lawrence G, Sousa LP, Gonçalves FL, Saintrain MVL, Vieira APGF. Acesso à Saúde Bucal Pública pelo paciente especial: a ótica do Cirurgião-Dentista. Rev Bras Promoç Saude 2014; 27(2):190-197..

The positive findings may be related to initiatives directed at the structuring of the Care Network for People with Disabilities, the aim of which is to expand access and improve the quality of care for disabled individuals in the Brazilian public healthcare system, and the Smiling Brazil Program, which includes comprehensive care for patients with special needs¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013.^,1717 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,1818 Brasil. Ministério da Saúde (MS). Passo a passo das ações da Política Nacional de Saúde Bucal. Brasília: MS; 2016. [acessado 2017 Out 23]. Disponível em: http://189.28.128.100/dab/docs/portaldab/documentos/passo_a_passo_ceo.pdf
http://189.28.128.100/dab/docs/portaldab... . However, the oral health status of the children/adolescents with severe CP reported by the participants and the most prevalent reason for visiting a dentist (treatment/urgent care) suggest problems in the effectiveness of health promotion strategies and prevention measures for controlling oral problems in this population. These aspects also reveal frailties in the offer of comprehensive oral health care by public dental services accessed by the population with CP³⁶36 Lawrence G, Sousa LP, Gonçalves FL, Saintrain MVL, Vieira APGF. Acesso à Saúde Bucal Pública pelo paciente especial: a ótica do Cirurgião-Dentista. Rev Bras Promoç Saude 2014; 27(2):190-197..

Other issues perceived by the participants should be considered in this discussion, such as the low availability of dentists and the low level of humanization of dentists when providing care for the children/adolescents. The low availability of dentists for patients with special needs continues to be a problem in Brazil, even though it is one of the few countries that offer registered dental specialties for such patients³⁸38 Faulks D, Freedman L, Thompson S, Sagheri D, Dougali A. The value of education in special care dentistry as a means of reducing inequalities in oral health. Eur J Dent Educ 2012; 16(4):195-201. and is where the expansion of the offer of dental services and healthcare units intensified beginning in 2004 with the National Oral Health Policy¹⁸18 Brasil. Ministério da Saúde (MS). Passo a passo das ações da Política Nacional de Saúde Bucal. Brasília: MS; 2016. [acessado 2017 Out 23]. Disponível em: http://189.28.128.100/dab/docs/portaldab/documentos/passo_a_passo_ceo.pdf
http://189.28.128.100/dab/docs/portaldab... ^,3131 Cascaes AM, Dotto L, Bomfim RA. Trends in the dental surgeon workforce in Brazil 2007-2014: a time series study using data from the National Registry of Health Services. Epidemiol Serv Saude 2018; 27(1):e201723615.^,3939 Chaves LA, Jorge AO, Cherchiglia ML, Reis IA, Santos MAC, Santos AF, Machado ATGM, Andrade EIG. Integração da atenção básica à rede assistencial: análise de componentes da avaliação externa do PMAQ-AB. Cad Saude Publica 2018; 34(2):e00201515.

National studies point out a set of professional barriers involved in dental care for patients with special needs, such as difficulties of a technical and emotional nature, gaps in the educational background¹⁷17 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,3737 Macêdo G, Lucena E, Lopes I, Batista L. Acesso ao atendimento odontológico dos pacientes especiais: a percepção de cirurgiões-dentistas da atenção básica. RCP 2018; 4(1):67-80.^,4040 Jacomine JC, Ferreira R, Sant’Ana ACP, Rezende MLR, Gregui SLA, Damante CA, Zangrando MSR. Saúde Bucal e Pacientes com Necessidades Especiais: percepções de graduandos em Odontologia da FOB-USP. Revista da ABENO 2018; 18(2):45-54. and a lack of professional training¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013.^,4040 Jacomine JC, Ferreira R, Sant’Ana ACP, Rezende MLR, Gregui SLA, Damante CA, Zangrando MSR. Saúde Bucal e Pacientes com Necessidades Especiais: percepções de graduandos em Odontologia da FOB-USP. Revista da ABENO 2018; 18(2):45-54.. The perception of the participants regarding the low degree of humanization in dental care may be related to these barriers, demonstrating possible problems regarding educational policies and professional training for providing care to this population¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013. to achieve broad, humanized oral health care through actions on the primary care level¹²12 Caldas Júnior AF, Machiavelli JL, organizadores. Atenção e Cuidado da Saúde Bucal da Pessoa com Deficiência: introdução ao estudo. Recife: Ed. Universitária, 2013.^,1717 Freire ALASS. Saúde bucal para pacientes com necessidades especiais: análise da implementação de uma experiência local [tese]. Rio de Janeiro: Escola Nacional de Saúde Pública Sergio Arouca; 2011.^,3737 Macêdo G, Lucena E, Lopes I, Batista L. Acesso ao atendimento odontológico dos pacientes especiais: a percepção de cirurgiões-dentistas da atenção básica. RCP 2018; 4(1):67-80.^,3939 Chaves LA, Jorge AO, Cherchiglia ML, Reis IA, Santos MAC, Santos AF, Machado ATGM, Andrade EIG. Integração da atenção básica à rede assistencial: análise de componentes da avaliação externa do PMAQ-AB. Cad Saude Publica 2018; 34(2):e00201515^,4141 Brasil. Ministério da Saúde (MS). Política Nacional de Atenção Básica. Brasília: MS; 2012. (Série E. Legislação em Saúde). Such professional difficulties related to the offer and humanization of health care are limiting factors with regards to ensuring quality care for the population with special needs, affecting the motivation and establishment of a bond between dentists in the public sector and the patients who use these services. This is one of the challenges to be addressed in oral health care policies to ensure access to comprehensive quality care to which this population has a right.

The major limitation of the present study was the use of a convenience sample (case series), which confers low external validity to the findings. The major strength of this study was the methodological care taken during the data collection so that the results indeed expressed the opinions of the participants, minimizing information bias.

This study demonstrated the occurrence of greater difficulties regarding daily oral health care of children/adolescents with severe CP. Despite the barriers regarding access to public dental services, the majority of parents/caregivers perceived facilitated access, with the early use of these services, but with problems related to the quality of the care offered.

Final considerations

Based on the present findings, the problems perceived by mothers/caregivers of children/adolescents with CP need to be addressed by integral, inclusive, equitable, socioeconomic and health policies that result in an improvement in quality of life as well as comprehensive, humanized oral health care to which the population with special needs has a right. Moreover, professional barriers related to access to oral health care require greater investments in training through continued education. Such investments should be founded on the precepts of expanded access to treatment and the national policy of the humanization of health care, with greater involvement and commitment in the occurrence of the social disadvantages and oral health needs of children and adolescents with CP, especially those with severe motor impairment.

Acknowledgements

To the Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) for the Research Productivity Grant to Marília Lima.

References

Publication Dates

History