title: Living with a child with a severe orofacial handicap: experiences from the perspectives of parents.
abstract: 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.
authors.affiliation: Nordic School of Public Health, Göteborg, Sweden.
authors.forename: Ulrika
authors.initials: U
authors.lastname: Trulsson
authors.forename: Gunilla
authors.initials: G
authors.lastname: Klingberg
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D019465:Craniofacial Abnormalities / Q000523:psychology*; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D020377:Self Efficacy; D012944:Social Support; D035862:Vulnerable Populations