Trulsson Ulrika, Klingberg Gunilla
Nordic School of Public Health, Göteborg, Sweden.
Eur J Oral Sci. 2003 Feb;111(1):19-25. doi: 10.1034/j.1600-0722.2003.00001.x.
Orofacial functions include competences/abilities such as eating, breathing, speech/language, mimicry, as well as oral health, and disturbances are common in children with rare disorders. To describe parental experiences of orofacial function and needs in children with rare disorders, in-depth interviews focusing on orofacial function were carried out with 14 parents. Interviews were transcribed verbatim and analysed in open, axial (theoretical) and selective coding processes according to Grounded Theory. Two core categories emerged from data in the analysis: 'the vulnerable family' and 'support perceived from others'. The data indicated the importance of a balance between these two core categories: the strain caused by living in a family with a child with a severe disability/handicap, and the availability of perceived support from caregivers and significant others. This balance was necessary for the parents in developing self-reliance and in reconciling themselves to their life situations. Parents described orofacial dysfunction in terms of feeding and communication problems, needs for orthodontic treatment to reduce risk of trauma or improve chewing, and drooling. Oral health issues such as dental caries and gingivitis were not mentioned. Five aspects of good professional attitude were recognized: respect, involvement, continuity, knowledge, and availability.
口面部功能包括进食、呼吸、言语/语言、模仿等能力，以及口腔健康，而罕见病患儿中这些功能出现障碍很常见。为了描述罕见病患儿家长对口面部功能及需求的体验，对14位家长进行了聚焦口面部功能的深入访谈。访谈内容逐字记录，并根据扎根理论在开放编码、轴心（理论）编码和选择性编码过程中进行分析。分析数据得出两个核心类别：“脆弱家庭”和“来自他人的支持感”。数据表明这两个核心类别之间平衡的重要性：与重度残疾/障碍儿童生活在一起的家庭所承受的压力，以及从照顾者和重要他人那里获得的支持感。这种平衡对于家长培养自立能力和接受自身生活状况来说是必要的。家长们从喂养和沟通问题、正畸治疗以降低创伤风险或改善咀嚼以及流口水等方面描述了口面部功能障碍。未提及龋齿和牙龈炎等口腔健康问题。认识到良好职业态度的五个方面：尊重、参与、连续性、知识和可及性。
