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

Kaye PL, Fiske J, Bower EJ, Newton JT, Fenlon M

East Sussex Health Care NHS Trust, Arthur Blackman Clinic, Battle Rd, St. Leonards-on-Sea, UK.

AIMS: To 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.

Published 16 May 2005 in Br Dent J, 198(9): 571-8, discussion 559.
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