Objective To explore the oral health behavior cognition and care experience of the primary caregivers for children with ectodermal dysplasia.Methods From February to April 2023,purposive sampling was used to select 10 primary caregivers of children with ectodermal dysplasia who visited the Department of Dental Implantation of the Affiliated Stomatological Hospital of Nanjing Medical University as the research subject.Semi-structured interviews were used to collect data,and Colaizzi 7-step analysis method was used to sort out and analyze the data.Results The oral health behavior cognition of the primary caregivers for children with ectodermal dysplasia were summarized into three themes,including incomplete oral health behavior cognition,insufficient emphasis on continuity of health education,and high expectations for disease treatment effectiveness.The care experience was summarized into three themes,namely insufficient family and social support,excessive psychological pressure,and feeling confused and unable to cope with the education and guidance of the child.Conclusions There are many misconceptions among the primary caregivers of children with ectodermal dysplasia regarding oral health behaviors,including insufficient cognition,high psychological pressure,and numerous care issues.We should strengthen the knowledge training of caregivers through various means,increase their cognitive level,attach importance to their psychological guidance,enhance their emotional response ability,reduce the burden of care and improve their care experience.
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