Views and experiences of parents and siblings of adults with Down Syndrome regarding oral healthcare: a qualitative and quantitative study

Abstract

AimsTo investigate experiences and expectations of parents/siblings of adults with Down Syndrome (DS) regarding oral healthcare, and explore factors impacting on access and experience of dental care for this group. Design A two phase qualitative and quantitative study using in-depth interviews with a convenience sample of six parents/siblings, and a postal questionnaire of 200 parents/siblings of adults with DS who are members of the Down Syndrome Association. Results The main themes elicited from the qualitative interviews related to concern, experiences, parents'/siblings' attitudes, preferences and information. The response rate from the postal questionnaire was 63.5%. Adults with DS attended the dentist regularly but received little restorative treatment. Experience of oral healthcare was influenced by the attitudes and skills of dental health professionals; stigma; and relatives' expectations of dentists, their oral health beliefs, information and support received, knowledge and priorities. Parents/siblings wanted dentists to be proactive in providing more information on oral health issues in collaboration with other health and social care professionals. Conclusions Whilst most adults with DS visited the dentist regularly, relatively little treatment had been provided. Parents highlighted a need for appropriate and timely oral health information early in their child's life, and access to dentists who were sympathetic, good communicators and well-informed about DS.

Uso de serviços odontológicos por pacientes com síndrome de Down

“…Esse fato justifi cou o uso de uma amostra de conveniência para descrever aspectos importantes do grupo em questão, não sendo possível extrapolar os resultados encontrados para outras populações. 10,17 A validação interna do estudo foi assegurada pelas fases de teste/re-teste do questionário e calibração intra-examinadora, que apresentaram boa concordância no teste kappa. A análise bivariada identifi cou que as variáveis "idade", "hábito de bruxismo", "história prévia de cirurgia", "orientação profi ssional para que a mãe levasse o fi lho com síndrome de Down ao dentista" e "presença de lesão de cárie dentária" foram associadas estatisticamente ao fato da criança ou adolescente já ter sido submetido a alguma consulta odontológica.…”

“…3,10 Esse fato fortalece a questão da abordagem do profi ssional de saúde não ser restrita à sua especialidade, devendo dimensionar fatores de risco à saúde e conseqüentemente, executar ações preventivas. Ao exercer uma prática de trabalho atenta a identifi car as necessidades de saúde apresentadas pelo usuário, o profi ssional passa a exercer um atendimento integral, evitando uma visão reducionista e fragmentária do paciente.…”

“…18 A saúde bucal representa um aspecto importante para a inclusão social de pessoas com defi ciência. 10 Raramente as doenças bucais e as malformações orofaciais acarretam risco de morte, entretanto, causam quadros de dor, infecções, complicações respiratórias e problemas mastigatórios. Do ponto de vista estético, características como mau hálito, dentes mal posicionados, traumatismos, sangramento gengival, hábito de fi car com a boca aberta e ato de babar podem mobilizar sentimentos de compaixão, repulsa e/ou preconceito, acentuando atitudes de rejeição social.…”

Down syndrome: a risk factor for malocclusion severity?

“…1,2,3 Patients with this syndrome exhibit cognitive impairment as well as bone growth disorders and generalized muscle hypotonia. 4,5 Moreover, oral health problems, such as inadequate oral hygiene, periodontal disease, caries, malocclusion, and tooth loss, are more prevalent in this group of individuals than in the general population.…”

“…12,13,14 All these factors contribute toward the development of transversal and vertical alterations in the occlusion, such as anterior open bite, posterior or anterior crossbite, and the proclination of the anterior teeth. 2,3 The prevalence of malocclusion and associated factors have been assessed in individuals with DS. 8,12,13 However, a critical reading of the literature reveals that there is a gap in knowledge concerning the determinant factors associated with the malocclusion establishment and severity.…”