Perceived Oral Health and Care of Children with Juvenile Idiopathic Arthritis: A Qualitative Study

Aims: To increase knowledge about how children diagnosed with juvenile idiopathic arthritis (JIA) perceive their oral health and dental care. Methods: Fifteen interviews with children diagnosed with JIA, aged 6 to 16 years, were analyzed according to classical grounded theory. Results: The children’s main concern about their oral health was identified as creating a positive identity after being diagnosed with JIA and learning to live with oral health problems. While attempting to cope with this concern, the children often endured in silence, the core category in the analysis. A variety of aspects were found of this core coping strategy, which were categorized as differentiating from the disease, working on personal caretaking and positive attitude, fighting fears and sadness, control of professional aid, and building supportive relationships. The results emphasize the importance for caregivers to show empathy and interest in the child as a person, to ask precise questions when taking case histories so the child does not remain silent, to provide psychosocial support and suggest positive coping strategies, to describe and administer treatments, and to give hope for the future. Conclusion: Awareness of the social interaction between a child diagnosed with JIA and health professionals as well as awareness of how to approach a child with longstanding illness are crucial for disclosing and treating the child’s orofacial symptoms.

children; idiopathic arthritis; oral health; pain; qualitative

1. Cassidy JT (ed). Textbook of Pediatric Rheumatology, ed 6. Philadelphia: Saunders, 2011.

2. Abramowicz S, Susarla HK, Kim S, Kaban LB. Physical findings associated with active temporomandibular joint inflammation in children with juvenile idiopathic arthritis. J Oral Maxillofac Surg 2013;71:1683–1687.

3. Koos B, Twilt M, Kyank U, Fischer-Brandies H, Gassling V, Tzaribachev N. Reliability of clinical symptoms in diagnosing temporomandibular joint arthritis in juvenile idiopathic arthritis. J Rheumatol 2014;9:1871–1877.

4. Leksell E, Ernberg M, Magnusson B, Hedenberg-Magnusson B. Orofacial pain and dysfunction in children with juvenile id-iopathic arthritis: A case-control study. Scand J Rheumatol 2012;5:375–378.

5. Cedstromer AL, Andlin-Sobocki A, Berntson L, Hedenberg-Magnusson B, Dahlstrom L. Temporomandibular signs, symp-toms, joint alterations and disease activity in juvenile idiopathic arthritis—An observational study. Pediatr Rheumatol Online J 2013;11:37,0096-11-37.

6. Schanberg LE, Lefebvre JC, Keefe FJ, Kredich DW, Gil KM. Pain coping and the pain experience in children with juvenile chronic arthritis. Pain 1997;73:181–189.

7. McGrath PA, Speechley KN, Seifert CE, et al. A survey of children’s acute, recurrent, and chronic pain: Validation of the pain experience interview. Pain 2000;87:59–73.

8. Krekmanova L, Bergius M, Robertson A, et al. Everyday- and dental-pain experiences in healthy Swedish 8-19 year olds: An epidemiological study. Int J Paediatr Dent 2009;19:438–447.

9. Jokovic A, Locker D, Guyatt G. What do children’s global ratings of oral health and well-being measure? Community Dent Oral Epidemiol 2005;33:205–211.

10. Barbosa TS, Gaviao MB. Oral health-related quality of life in children: Part I. How well do children know themselves? A sys-tematic review. Int J Dent Hy 2008;6:93–99.

11. Sallfors C, Fasth A, Hallberg LR. Oscillating between hope and despair—A qualitative study. Child Care Health Dev 2002;28: 495–505.

12. Tong A, Jones J, Craig JC, Singh-Grewal D. Children’s experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken) 2012;64:1392–1404.

13. Nilsson IM, List T, Willman A. Adolescents with temporoman-dibular disorder pain-the living with TMD pain phenomenon. J Orofac Pain 2011;25:107–116.

14. Sallfors C, Hallberg LR, Fasth A. Gender and age differences in pain, coping and health status among children with chronicarthritis. Clin Exp Rheumatol 2003;21:785–793.

15. Leksell E, Ernberg M, Magnusson B, Hedenberg-Magnusson B. Intraoral condition in children with juvenile idiopathic arthritis compared to controls. Int J Paediatr Dent 2008;18:423–433.

16. Abramowicz S, Kim S, Susarla HK, Kaban LB. Differentiating arthritic from myofascial pain in children with juvenile idiopathic arthritis: Preliminary report. J Oral Maxillofac Surg 2013;71: 493–496.

17. Bromberg MH, Schechter NL, Nurko S, Zempsky WT, Schanberg LE. Persistent pain in chronically ill children without detectable disease activity. Pain Manag 2014;4:211–219.

18. Ahmed N, Mustafa HM, Catrina AI, Alstergren P. Impact of temporomandibular joint pain in rheumatoid arthritis. Mediators Inflamm 2013;2013:597419.

19. Twilt M, Schulten AJ, Verschure F, Wisse L, Prahl-Andersen B, van Suijlekom-Smit LW. Long-term followup of temporoman-dibular joint involvement in juvenile idiopathic arthritis. Arthritis Rheum 2008;15;59:546–552.

20. Stoustrup P, Verna C, Kristensen KD, Kuseler A, Herlin T, Pedersen TK. Smallest detectable differences in clinical functional temporomandibular joint examination variables in juvenile idiopathic arthritis. Orthod Craniofac Res 2013;16:137–145.

21. Stoustrup P, Kuseler A, Kristensen KD, Herlin T, Pedersen TK. Orthopaedic splint treatment can reduce mandibular asymmetry caused by unilateral temporomandibular involvement in juvenile idiopathic arthritis. Eur J Orthod 2013;35:191–198.

22. Vierola A, Suominen AL, Ikavalko T, et al. Clinical signs of tem-poromandibular disorders and various pain conditions among children 6 to 8 years of age: The PANIC study. J Orofac Pain2012;26:17–25.

23. Leme MS, Souza Barbosa T, Gaviao MB. Relationship among oral habits, orofacial function and oral health-related quality of life in children. Pesqui Odontol Bras 2013;27:272–278.

24. Glaser BG. The discovery of grounded theory: Strategies for qualitative research. Strauss AL (ed). New Brunswick, NJ: Aldine Transaction (division of Transaction Publishers), 2006.

25. Strauss AL, Corbin J. Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage, 1990.

26. Stern PN. Grounded theory methodology: Its uses and pro-cesses. Image (IN) 1980;12:20–23.

27. Mead GH. On social psychology: Selected papers. Rev ed. Strauss A (ed). Chicago: University of Chicago Press, 1964.

28. Guvå G, Hylander I. Grundad teori: Ett teorigenererande forsk-ningsperspektiv. 1. [Grounded Theory: A Theory Generating Research Perspective, ed 1.] Stockholm: Liber, 2003.

29. Charmaz K. Grounded theory methodology: Objectivist and constructivist qualitative methods. In: Denzin NK, Lincoln Y (eds). Handbook of Qualitative Research, ed 2. Thousand Oaks, CA: Sage, 2000:509–535.

30. Dworkin SF, LeResche L. Research diagnostic criteria for temporomandibular disorders: Review, criteria, examinations and specifications, critique. J Craniomandib Disord 1992;6: 301–355.

31. Glaser BG. Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press, 1978.

32. Nilsson IM, Drangsholt M, List T. Impact of temporomandibular disorder pain in adolescents: Differences by age and gender. J Orofac Pain 2009;23:115–122.

33. Jedel E, Carlsson J, Stener-Victorin E. Health-related quality of life in child patients with temporomandibular disorder pain. Eur J Pain 2007;11:557–563.

34. Forgeron PA, McGrath P, Stevens B, et al. Social information processing in adolescents with chronic pain: My friends don’t really understand me. Pain 2011;152:2773–2780.

35. Wahlund K, List T, Larsson B. Treatment of temporomandibular disorders among adolescents: A comparison between occlusal appliance, relaxation training, and brief information. Acta Odontol Scand 2003;61:203–211.

36. Wicksell RK, Melin L, Lekander M, Olsson GL. Evaluating the effectiveness of exposure and acceptance strategies to improve functioning and quality of life in longstanding pediatric pain--a randomized controlled trial. Pain 2009;141:248–257.

37. Turner JA, Mancl L, Aaron LA. Short- and long-term efficacy of brief cognitive-behavioral therapy for patients with chronic temporomandibular disorder pain: A randomized, controlled trial. Pain 2006;121:181–194.

38. Dell’Api M, Rennick JE, Rosmus C. Childhood chronic pain and health care professional interactions: Shaping the chronic pain experiences of children. J Child Health Care 2007;11:269–286.

39. Klingberg G, Hallberg U. Oral health—not a priority issue. A grounded theory analysis of barriers for young patients with disabilities to receive oral health care on the same premise as others. Eur J Oral Sci 2012;120:232–238.

40. Meldrum ML, Tsao JC, Zeltzer LK. “I can’t be what I want to be”: Children’s narratives of chronic pain experiences and treatment outcomes. Pain Med 2009;10:1018–1034.

41. Brattberg G. Do pain problems in young school children persist into early adulthood? A 13-year follow-up. Eur J Pain 2004;8:187–199.

42. Barbosa TS, Castelo PM, Leme MS, Gaviao MB. Associations between oral health-related quality of life and emotional statuses in children and preadolescents. Oral Dis 2012;18:639–647.

43. Connelly M, von Baeyer CL, Stinson J, Schanberg LE. Pain as a quality of care measure in juvenile idiopathic arthritis: One step forward, but is it the best foot? Comment on the article by Lovell et al. Arthritis Care Res (Hoboken) 2011;63:1352–1353; author reply 1353.

44. Petersen PE. The world oral health report 2003: Continuous improvement of oral health in the 21st century—The approach of the WHO global oral health programme. Community Dent Oral Epidemiol 2003;31(Suppl 1):3–23.