Parenting a Child with Juvenile Idiopathic Arthritis, Orofacial Pain, and Dysfunction: A Qualitative Study
Eva Leksell, DDS, PhD/Ulrika Hallberg, PhD/AnnaCarin Horne, MD, PhD/Malin Ernberg, DDS, PhD/Britt Hedenberg-Magnusson, DDS, PhD
PMID: 29019476
DOI: 10.11607/ofph.1689
Aims: To deepen knowledge of how parents of children diagnosed with juvenile idiopathic arthritis (JIA) perceive the orofacial manifestations of the disease, its treatments, and their encounters with dental care providers. Methods: A total of 15 interviews with parents of JIA patients (3 to 16 years old) with orofacial pain were analyzed according to classic grounded theory. Results: The main problem was identified as controlling an unpredictable life situation that includes a child with JIA. To solve this main problem, the parent was trying to comprehend, help, and speak for the child with disability, a solution that permeated their life situation. This was therefore identified as the core category, and the other categories (ie, ways parents responded to their situation) were reflecting on and re-evaluating the life situation, monitoring the child’s symptoms and treatments, adapting everyday routines, seeking doctors and information, influencing school and society, and managing job and family finances. The main problem and the various categories formed a model reflecting how parents of children diagnosed with JIA act and think. Conclusion: It is extremely important for caregivers to understand the complexity of the life situation for parents whose children have been diagnosed with JIA. They must facilitate the parent’s understanding of how this disease can influence the orofacial area and day-to-day care.
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