The Inclusion of Disabled Children in Oral Health
Background: Existing guidance and research indicate that children need to be involved in matters relevant to them, including research. Medical and dental research frequently excludes disabled children. This thesis adopted a rights-based approach and explores the inclusion of disabled children in oral health. Methods: Two studies form the thesis. Study 1 is a systematic review, which provides evidence for the ways in which disabled children have been included in oral health research. The results from Study 1 provided justification for Study 2, which is an ethnography. This explores ways of including disabled children in oral health. A purposive sample of ten children between the ages of 9 and 15 years with a range of disabilities, ten mothers of disabled children and ten health and educational professionals in Riyadh, Saudi Arabia, participated. Data collection used pluralistic methods. Data analysis took place using inductive thematic analysis. Results: Study 1: Out of the 153 studies retrieved, only 9 (5.9%) attempted to involve children in oral health research, but disabled children were mostly seen as the subjects of research. A total of 55 (35.9%) used mothers or carers as proxies and 89 studies (58.2%) treated children as objects of research. The disabling language used to describe the children frequently portrayed them as abnormal and deviant. The systematic review highlighted the routine exclusion of disabled children from oral health research. Study 2: The creative and pluralistic methods; pictures, guided tours and games, enabled disabled children to participate in oral health research. It also increased their ability to chat informally and appeared to reduce the power imbalance compared to formal, structured interviews. Group interviews, symbols and drawings acted as a barrier to the children’s participation. Children displayed oral health knowledge and discussed practices, acknowledging the supportive roles their mothers played. They felt excluded during dental appointments and feared the dentist, associating the profession with pain, not prevention. Mothers as sole agents for their children’s oral health lacked support, information and inclusion, preventing them from including their children in oral health. Inaccessible services added to the exclusion of mothers and children from oral health. Dental professionals displayed discriminatory attitudes towards disabled children and problematised mothers. They displayed poor communication skills, lacked education and insight about disability and the skills to treat disabled children without a general anaesthetic. Educational professionals tended to discuss disabled children in terms of inability, displaying a deficit approach to impairment. Conclusions: Studies 1 and 2 provide evidence of disabled children’s experiences of exclusion in oral health. The thesis also provides evidence that they can be included in research using appropriate methodological designs and innovative, pluralistic methods, drawn from different disciplines. This promotes a rights-based approach, one that recognises diversity and aims to reduce the discrimination and disempowerment of disabled children. Dental education, oral health policy and service provision in Saudi Arabia should consider ways of reducing oral health inequalities for this marginalised group via the provision of support and a focus on societal barriers rather than conceptualising disability as a problem within the individual.