+ Site Statistics
+ Search Articles
+ PDF Full Text Service
How our service works
Request PDF Full Text
+ Follow Us
Follow on Facebook
Follow on Twitter
Follow on LinkedIn
+ Subscribe to Site Feeds
Most Shared
PDF Full Text
+ Translate
+ Recently Requested

Living with a child with a severe orofacial handicap: Experiences from the perspectives of parents

Living with a child with a severe orofacial handicap: Experiences from the perspectives of parents

European Journal of Oral Sciences 111(1): 19-25

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.

Please choose payment method:

(PDF emailed within 0-6 h: $19.90)

Accession: 010929441

Download citation: RISBibTeXText

PMID: 12558804

DOI: 10.1034/j.1600-0722.2003.00001.x

Related references

Parents' experiences of living through their child's suffering from and surviving severe meningococcal disease. Nursing in Critical Care 10(2): 78-89, 2005

The experiences of families living with the anticipatory loss of a school-age child with spinal muscular atrophy - the parents' perspectives. Journal of Clinical Nursing 25(17-18): 2648-2657, 2016

"I Am the Only Child of my Parents:" Perspectives on Future Elder Care for Parents among Chinese only-Children Living overseas. Journal of Cross-Cultural Gerontology 31(3): 255-275, 2016

Handicap. Parents should have precise and honest information on child's handicap. Sygeplejersken 84(35): 18-21, 1984

Living in the fallout: parents' experiences when their child becomes mentally ill. Archives of Psychiatric Nursing 15(2): 69-77, 2001

Parents with learning difficulties in the child protection system: experiences and perspectives. Journal of Intellectual Disabilities 9(2): 109-129, 2005

Living through the death of a child: a qualitative study of bereaved parents' experiences. International Journal of Nursing Studies 48(11): 1384-1392, 2011

Ways of telling new parents about their child and his or her mental handicap: a comparison of doctors' and parents' views. Journal of Mental Deficiency Research 35: 48-57, 1991

Parents' experiences of living with a child with hydrocephalus: a cross-sectional interview-based study. Health Expectations 18(5): 1709-1720, 2015

Living and managing with the long-term implications of neonatal chronic lung disease: The experiences and perspectives of children and their parents. Heart and Lung 44(6): 512-516, 2016

Physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit. Pediatric Critical Care Medicine 12(2): E64-E68, 2011

Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expectations 18(4): 452-474, 2015

Living with an inborn error of metabolism detected by newborn screening-parents' perspectives on child development and impact on family life. Journal of Inherited Metabolic Disease 37(2): 189-195, 2014

Disclosure of handicap: parents' recent experiences. Child: Care Health and Development 20(3): 209-210, 1994