Impact of Rheumatic Disease on Social Development in Adolescents and Young Adults

  • Hema ChaplinEmail author
  • Alice Cai
Part of the In Clinical Practice book series (ICP)


Adolescents and young adults (AYAs) must be considered in their social and developmental context as this is impacted by their chronic rheumatic musculoskeletal disease (RMD) which in turn affects its management and outcomes. Healthcare professionals (HCPs) have a role in helping support AYAs with RMD with their social development, particularly by supporting autonomy to make their own choices. This chapter discusses social development and the impact on, and of, RMD, including implications for disease course and management, and the importance of peer support.


Social development Relationships Autonomy Peer support Disclosure 


  1. 1.
    Viner R. Life stage: adolescence. Chief Medical Officer annual report 2012: children and young people’s health. 2012.Google Scholar
  2. 2.
    Christie D, Viner R. Adolescent development. BMJ Br Med J. 2005;330(7486):301–4.CrossRefGoogle Scholar
  3. 3.
    Eccleston C, Wastell S, Crombez G, Jordan A. Adolescent social development and chronic pain. Eur J Pain. 2008;12(6):765–74.CrossRefGoogle Scholar
  4. 4.
    Packham JC. Overview of the psychosocial concerns of young adults with juvenile arthritis. Musculoskeletal Care. 2004;2(1):6–16.CrossRefGoogle Scholar
  5. 5.
    Armon K. Outcomes for juvenile idiopathic arthritis. Paediatr Child Health. 2014;24(2):64–71.CrossRefGoogle Scholar
  6. 6.
    Snelgrove R. Living with a chronic illness in adolescence and emerging adulthood. University of Waterloo, PhD Thesis Collection. 2012.Google Scholar
  7. 7.
    Reiter-Purtill J, Gerhardt CA, Vannatta K, Passo MH, Noll RB. A controlled longitudinal study of the social functioning of children with juvenile rheumatoid arthritis. J Pediatr Psychol. 2003;28(1):17–28.CrossRefGoogle Scholar
  8. 8.
    Chaplin H, Barnett R, Ioannou Y, Sen D, Lempp H, Cai RA, et al. The impact of juvenile idiopathic arthritis on adolescents and young adults: a qualitative study. Rheumatology. 2018;57(Suppl_3):key075.523.Google Scholar
  9. 9.
    Kietz D. Psychosocial aspects in pediatric rheumatology. Curr Opin Rheumatol. 2004;16(5):555–9.CrossRefGoogle Scholar
  10. 10.
    Sällfors C, Hallberg LRM. Fitting into the prevailing teenage culture: a grounded theory on female adolescents with chronic arthritis. Int J Qual Stud Health Well Being. 2009;4(2):106–14.CrossRefGoogle Scholar
  11. 11.
    Tunnicliffe DJ, Singh-Grewal D, Chaitow J, Mackie F, Manolios N, Lin M-W, et al. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus erythematosus. Arthritis Care Res. 2016;68(6):828–37.CrossRefGoogle Scholar
  12. 12.
    Díaz-Mendoza AC, Modesto Caballero C, Navarro-Cendejas J. Analysis of employment rate and social status in young adults with childhood-onset rheumatic disease in Catalonia. Pediatr Rheumatol. 2015;13(1):29.CrossRefGoogle Scholar
  13. 13.
    Packham JC, Hall MA. Long-term follow-up of 246 adults with juvenile idiopathic arthritis: education and employment. Rheumatology. 2002;41(12):1436–9.CrossRefGoogle Scholar
  14. 14.
    Arkela-Kautiainen M, Haapasaari J, Kautiainen H, Leppänen L, Vilkkumaa I, Mälkiä E, et al. Functioning and preferences for improvement of health among patients with juvenile idiopathic arthritis in early adulthood using the WHO ICF model. J Rheumatol. 2006;33(7):1369–76.PubMedGoogle Scholar
  15. 15.
    Packham JC, Hall MA. Long-term follow-up of 246 adults with juvenile idiopathic arthritis: social function, relationships and sexual activity. Rheumatology. 2002;41(12):1440–3.CrossRefGoogle Scholar
  16. 16.
    Suris J, Michaud P, Viner R. The adolescent with a chronic condition. Part I: developmental issues. Arch Dis Child. 2004;89(10):938–42.CrossRefGoogle Scholar
  17. 17.
    Hackett J, Johnson B, Shaw KL, McDonagh JE. Friends united: an evaluation of an innovative residential self-management programme in adolescent rheumatology. Br J Occup Ther. 2005;68(12):567–73.CrossRefGoogle Scholar
  18. 18.
    Bromberg MH, Connelly M, Anthony KK, Gil KM, Schanberg LE. Self-reported pain and disease symptoms persist in juvenile idiopathic arthritis despite treatment advances: an electronic diary study. Arthritis Rheumatol. 2014;66(2):462–9.CrossRefGoogle Scholar
  19. 19.
    Consolaro A, Ravelli A. Paediatric rheumatology: juvenile idiopathic arthritis—are biologic agents effective for pain? Nat Rev Rheumatol. 2013;9(8):447–8.CrossRefGoogle Scholar
  20. 20.
    Jetha A, Badley E, Beaton D, Fortin PR, Shiff NJ, Rosenberg AM, et al. Transitioning to employment with a rheumatic disease: the role of independence, overprotection, and social support. J Rheumatol. 2014;41(12):2386–94.CrossRefGoogle Scholar
  21. 21.
    Huygen ACJ, Kuis W, Sinnema G. Psychological, behavioural, and social adjustment in children and adolescents with juvenile chronic arthritis. Ann Rheum Dis. 2000;59(4):276–82.CrossRefGoogle Scholar
  22. 22.
    AYPH. Ten reasons to invest in young people’s health. London: Association for Young People’s Health; 2017.Google Scholar
  23. 23.
    Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A, et al. Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Care Res. 2008;59(1):65–72.CrossRefGoogle Scholar
  24. 24.
    Hart RI, McDonagh JE, Thompson B, Foster HE, Kay L, Myers A, et al. Being as normal as possible: how young people ages 16–25 years evaluate the risks and benefits of treatment for inflammatory arthritis. Arthritis Care Res. 2016;68(9):1288–94.CrossRefGoogle Scholar
  25. 25.
    Nabors L, Ige TJ, Fevrier B. Peer support and psychosocial pain management strategies for children with systemic lupus erythematosus. J Immunol Res. 2015;2015:5.CrossRefGoogle Scholar
  26. 26.
    Camara M, Bacigalupe G, Padilla P. The role of social support in adolescents: are you helping me or stressing me out? Int J Adolesc Youth. 2017;22(2):123–36.CrossRefGoogle Scholar
  27. 27.
    Nabors LA, Iobst E, Weisman J, Precht B, Chiu CY, Brunner H. School support and functioning for children with juvenile rheumatic diseases. J Dev Phys Disabil. 2007;19:81–9.CrossRefGoogle Scholar
  28. 28.
    van Middendorp H, Evers AWM. The role of psychological factors in inflammatory rheumatic diseases: from burden to tailored treatment. Best Pract Res Clin Rheumatol. 2016;30(5):932–45.CrossRefGoogle Scholar
  29. 29.
    Mazzoni D, Cicognani E. Problematic social support from patients’ perspective: the case of systemic lupus erythematosus. Soc Work Health Care. 2014;53(5):435–45.CrossRefGoogle Scholar
  30. 30.
    Kaushansky D, Cox J, Dodson C, McNeeley M, Kumar S, Iverson E. Living a secret: disclosure among adolescents and young adults with chronic illnesses. Chronic Illn. 2017;13(1):49–61.CrossRefGoogle Scholar
  31. 31.
    Alunno A, Studenic P, Nikiphorou E, Balazova P, van Nieuwkoop L, Ramiro S, et al. Person-focused care for young people with rheumatic and musculoskeletal diseases: young rheumatologists’ and EULAR Young PARE perspectives. RMD Open. 2017;3(2):e000514.CrossRefGoogle Scholar
  32. 32.
    Ahola Kohut S, Stinson J, Forgeron P, Luca S, Harris L. Been there, done that: the experience of acting as a young adult mentor to adolescents living with chronic illness. J Pediatr Psychol. 2017;42(9):962–9.CrossRefGoogle Scholar
  33. 33.
    Stinson J, Ahola Kohut S, Forgeron P, Amaria K, Bell M, Kaufman M, et al. The iPeer2Peer Program: a pilot randomized controlled trial in adolescents with Juvenile Idiopathic Arthritis. Pediatr Rheumatol. 2016;14(1):48.CrossRefGoogle Scholar
  34. 34.
    Doukrou M, Segal TY. Fifteen-minute consultation: communicating with young people -how to use HEEADSSS, a psychosocial interview for adolescents. Arch Dis Child Educ Pract. 2018;103(1):15–9.CrossRefGoogle Scholar
  35. 35.
    Mundt JC, Marks IM, Shear MK, Greist JM. The work and social adjustment scale: a simple measure of impairment in functioning. Br J Psychiatry. 2002;180(5):461–4.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King’s College LondonLondonUK
  2. 2.Arthritis Research UK Centre for Adolescent Rheumatology, University College LondonLondonUK

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