Parenting a Child with Juvenile Idiopathic Arthritis, Orofacial Pain, and Dysfunction: A Qualitative Study

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.

juvenile idiopathic arthritis; oral health; pain; parents; qualitative

1. Cassidy JT, Petty R, Laxer R, Lindlsey C (eds). Textbook of Pediatric Rheumatology, ed 6. Philadelphia: Saunders, 2010.

2. Cedströmer AL, Ahlqwist M, Andlin-Sobocki A, Berntson L, Hedenberg-Magnusson B, Dahlström L. Temporomandibular condylar alterations in juvenile idiopathic arthritis most common in longitudinally severe disease despite medical treatment. Pediatr Rheumatol Online J 2014;12:43.

3. Frid P, Nordal E, Bovis F, et al. Temporomandibular joint involvement in association with quality of life, disability, and high disease activity in juvenile idiopathic arthritis. Arthritis Care Res (Hoboken) 2017;69:677–686.

4. Keller H, Müller LM, Markic G, Schraner T, Kellenberger CJ, Saurenmann RK. Is early TMJ involvement in children with juvenile idiopathic arthritis clinically detectable? Clinical examination of the TMJ in comparison with contrast enhanced MRI in patients with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2015;13:56.

5. Kristensen KD, Stoustrup P, Küseler A, Pedersen TK, Twilt M, Herlin T. Clinical predictors of temporomandibular joint arthritis in juvenile idiopathic arthritis: A systematic literature review. Semin Arthritis Rheum 2016;45:717–732.

6. Leksell E, Ernberg M, Magnusson B, Hedenberg-Magnusson

B. Orofacial pain and dysfunction in children with juvenile idiopathic arthritis: A case-control study. Scand J Rheumatol 2012; 41:375–378.

7. 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.

8. 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.

9. Leksell E, Hallberg U, Magnusson B, Ernberg M, Hedenberg-Magnusson B. Perceived oral health and care of children with juvenile idiopathic arthritis: A qualitative study. J Oral Facial Pain Headache 2015;29:223–230.

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

11. Mienna CS, Johansson EE, Wänman A. “Grin(d) and bear it”: Narratives from Sami women with and without temporomandibular disorders. A qualitative study. J Oral Facial Pain Headache 2014;28:243–251.

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. Duijster D, de Jong-Lenters M, Verrips E, van Loveren C. Establishing oral health promoting behaviours in children—Parents’ views on barriers, facilitators and professional support: A qualitative study. BMC Oral Health 2015;15:157.

14. 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.

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

16. Connelly M, Anthony KK, Schanberg LE. Parent perceptions of child vulnerability are associated with functioning and health care use in children with chronic pain. J Pain Symptom Manag 2012;43:953–960.

17. Filocamo G, Consolaro A, Schiappapietra B, et al. A new approach to clinical care of juvenile idiopathic arthritis: The Juvenile Arthritis Multidimensional Assessment Report. J Rheumatol 2011;38:938–953.

18. Consolaro A, Ravelli A. Defining criteria for disease activity states in juvenile idiopathic arthritis. Rheumatology (Oxford) 2016;55:595–596.

19. Vervoort T, Trost Z, Sütterlin S, Caes L, Moors A. Emotion regulatory function of parent attention to child pain and associated implications for parental pain control behaviour. Pain 2014; 155:1453–1463.

20. Duijster D, de Jong-Lenters M, de Ruiter C, Thijssen J, van Loveren C, Verrips E. Parental and family-related influences on dental caries in children of Dutch, Moroccan and Turkish origin. Community Dent Oral Epidemiol 2015;43:152–162.

21. Palermo TM, Zebracki K, Cox S, Newman AJ, Singer NG. Juvenile idiopathic arthritis: Parent-child discrepancy on reports of pain and disability. J Rheumatol 2004;31:1840–1846.

22. Lundberg V, Lindh V, Eriksson C, Petersen S, Eurenius E. Health-related quality of life in girls and boys with juvenile idiopathic arthritis: Self- and parental reports in a cross-sectional study. Pediatr Rheumatol Online J 2012;10:33.

23. Barbosa TS, Gavião MB. Oral health-related quality of life in children: Part III. Is there agreement between parents in rating their children’s oral health-related quality of life? A systematic review. Int J Dent Hyg 2008;6:108–113.

24. Gómez-Ramírez O, Gibbon M, Berard R, et al. A recurring rollercoaster ride: A qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2016;14:13.

25. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine de Gruyter,1967.

26. Blumer H. Symbolic Interactionism: Perspective and Method. Englewood Cliffs, NJ: Prentice-Hall, 1969.

27. Dellve L, Nordiska hälsovårdshögskolan. Coping with Childhood Disability [thesis]. Göteborg: Nordic School of Public Health, 2000.

28. Strauss AL, Corbin JM. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, ed 2. Thousand Oaks, CA: SAGE, 1998.

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

30. Charmaz K. Grounded theory: Objectivist and constructivist methods. In: Denzin NK, Lincoln YS (eds). Handbook of Qualitative Research, ed 2. Thousand Oaks, CA: SAGE, 2000: 509–535.

31. Connelly M, Bromberg MH, Anthony KK, Gil KM, Franks L, Schanberg LE. Emotion regulation predicts pain and functioning in children with juvenile idiopathic arthritis: An electronic diary study. J Pediatr Psychol 2012;37:43–52.

32. Noel M, Alberts N, Langer SL, Levy RL, Walker LS, Palermo TM. The sensitivity to change and responsiveness of the adult responses to children’s symptoms in children and adolescents with chronic pain. J Pediatr Psychol 2016;41:350–362.

33. Santos D, Silva C, Silva M. Oral health and quality of life of children and adolescents with juvenile idiopathic arthritis according to their caregivers’ perceptions. Spec Care Dentist 2015;35:272–278.

34. Vanoni F, Suris JC, von Scheven-Ge˙te A, Fonjallaz B, Hofer M. The difference of disease perception by juvenile idiopathic arthritis patients and their parents: Analysis of the JAMAR questionnaire. Pediatr Rheumatol Online J 2016;14:2.

35. Stinson JN, Feldman BM, Duffy CM, et al. Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents. J Child Health Care 2012;16: 124–140.

36. Consolaro A, Ruperto N, Pistorio A, et al. Development and initial validation of composite parent- and child-centered disease assessment indices for juvenile idiopathic arthritis. Arthritis Care Res (Hoboken) 2011;63:1262–1270.

37. Stinson JN, Connelly M, Jibb LA, et al. Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: A Delphi survey and consensus conference process followed by feasibility testing. Pediatr Rheumatol Online J 2012;10:7.