Journeys of adjustment: The experiences of adolescents living with juvenile idiopathic arthritis

Child: Care, Health and Development

Volumn 41, Issue 5, 2015, Pages 734-743

  Cartwright, T ^a   Fraser, E ^b   Edmunds, S ^a   Wilkinson, N ^c   Jacobs, K ^c,d  

^a UNIVERSITY OF WESTMINSTER   (United Kingdom)

^b CROSSHOUSE HOSPITAL   (United Kingdom)

^c NUFFIELD ORTHOPAEDIC CENTRE   (United Kingdom)

^d OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Adolescence; Chronic illness; Juvenile chronic arthritis; Psychological adjustment; Qualitative well being

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADOLESCENT BEHAVIOR; ARTHRITIS, JUVENILE; BODY IMAGE; CHILD HEALTH CARE; EMOTION; FEMALE; GREAT BRITAIN; HUMAN; HUMAN RELATION; MALE; PAIN; PATHOPHYSIOLOGY; PSYCHOLOGY; QUALITATIVE RESEARCH; QUALITY OF LIFE; SELF CONCEPT;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADOLESCENT BEHAVIOR; ADOLESCENT HEALTH SERVICES; ARTHRITIS, JUVENILE; BODY IMAGE; EMOTIONS; FEMALE; GREAT BRITAIN; HUMANS; INTERPERSONAL RELATIONS; MALE; PAIN; QUALITATIVE RESEARCH; QUALITY OF LIFE; SELF CONCEPT;

EID: 84938810850     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/cch.12206     Document Type: Article

References (38)

1. Antonovsky, A. (1987) Unraveling the Mystery of Health. How People Manage Stress and Stay Well. Jossey-Bass, San Francisco, CA.
2. Aujoulat, I., Marcolongo, R., Bonadiman, L. & Deccache, A. (2008) Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control. Social Science and Medicine, 66, 1228-1239.
3. Barlow, J. & Ellard, D. (2006) The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child: Care, Health and Development, 32, 19-31.
4. Barlow, J., Shaw, K. & Harrison, K. (1999) Consulting the 'experts': children's and parent's perceptions of psycho-educational interventions in the context of juvenile chronic arthritis. Health Education Research, 14, 597-610.
5. Beresford, B. & Sloper, P. (2003) Chronically ill adolescents' experiences of communication with doctors: a qualitative study. Journal of Adolescent Health, 33, 172-179.
6. Casier, A., Goubert, L., Huse, D., Theunis, M., Franckx, H., Robberecht, E., Matthys, D. & Crombez, G. (2008) The role of acceptance in psychological functioning in adolescents with cystic fibrosis: a preliminary study. Psychology & Health, 23, 629-638.
7. Christian, B. & D'Auria, J. (1997) The child's eye: memories of growing up with cystic fibrosis. Journal of Pediatric Nursing, 12, 3-12.
8. Ding, T., Hall, A., Jacobs, K. & David, J. (2008) Psychological functioning of children and adolescents with juvenile idiopathic arthritis is related to physical disability but not to disease status. Rheumatology, 47, 660-664.
9. DOH. (2002) The NHS Plan: A Plan for Investment, a Plan for Reform. HMSO, London.
10. Eyckmans, L., Hilderson, D., Westhovens, R., Wouters, C. & Moons, P. (2011) What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients. Clinical Rheumatology, 30, 459-465.
11. Gallant, M. (2003) The influence of social support on chronic illness self-management: a review and directions for research. Health Education & Behaviour, 30, 170-195.
12. Gare, B. & Fasth, A. (2003) The outcome of juvenile idiopathic arthritis. Current Paediatrics, 13, 327-334.
13. Garnefski, N., Koopman, H., Kraaij, V. & ten Cate, R. (2009) Brief report: cognitive emotion regulation strategies and psychological adjustment in adolescents with a chronic disease. Journal of Adolescence, 32, 449-454.
14. Haverman, L., Grootenhuis, M., van den Berg, J., van Veenendaal, M., Dolman, K., Swart, J., Kuijpers, T. W. & van Rossum, M. A. J. (2012) Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a web-based survey. Arthritis Care and Research, 64, 694-703.
15. LeBovidge, J. S., Lavigne, J. V., Donenberg, G. R. & Miller, M. L. (2003) Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review. Journal of Pediatric Psychology, 28, 29-39.
16. LeBovidge, J. S., Lavigne, J. V. & Miller, M. L. (2005) Adjustment to chronic arthritis of childhood: the roles of illness-related stress and attitude toward illness. Journal of Pediatric Psychology, 30, 273-286.
17. Linley, P. A. & Harrington, S. (2006) Strengths coaching: a potential-guided approach to coaching psychology. International Coaching Psychology Review, 1, 37-46.
18. Moons, P. & Norekvål, T. M. (2006) Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. European Journal of Cardiovascular Nursing, 5, 16-20.
19. Muldoon, M. F., Barger, S. D., Flory, J. D. & Manuck, S. B. (1998) What are quality of life measurements measuring? BMJ (Clinical Research Ed.), 316, 542-545.
20. Oen, K. & Cheang, M. (1996) Epidemiology of chronic arthritis in childhood. Seminars in Arthritis and Rheumatism, 26, 575-591.
21. Rapoff, M., McGrath, A. & Lindsley, C. (2003) Medical and psychosocial aspects of juvenile rheumatoid arthritis. In: Handbook of Pediatric Psychology, 3rd edn (ed. M. Roberts ), pp. 119-140. Guildford, New York.
22. Rich, M., Lamola, S., Gordon, J. & Chalfen, R. (2000) Video intervention/prevention assessment: a patient-centered methodology for understanding the adolescent illness experience. The Journal of Adolescent Health, 27, 155-165.
23. Sandstrom, M. J. & Schanberg, L. E. (2004) Peer rejection, social behavior, and psychological adjustment in children with juvenile rheumatic disease. Journal of Pediatric Psychology, 29, 29-34.
24. Schur, H., Gamsu, D. & Barley, V. (1999) The young person's perspective on living and coping with diabetes. Journal of Health Psychology, 4, 223-236.
25. Secor-Turner, M., Scal, P., Garwick, A., Horvath, K. & Wells, C. K. (2011) Living with juvenile arthritis: adolescents' challenges and experiences. Journal of Pediatric Health Care, 25, 302-307.
26. Shaw, K., Southwood, T. & McDonagh, J. (2004) User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology, 43, 770-778.
27. Smith, J. (1996) Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychology & Health, 11, 261-271.
28. Smith, J. (2011) Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5, 9-27.
29. Smith, J. & Osborn, M. (2003) Interpretative Phenomenological Analysis Qualitative Health Psychology. Sage, London.
30. Smith, J., Flowers, P. & Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research. Sage, London.
31. Stiles, W. (2003) Qualitative research: evaluating the process and the product. In: Handbook of Clinical Health Psychology (eds S. Llewelyn, P. Kennedy ), pp. 477-499. Wiley, Chichester.
32. Stinson, J., McGrath, P., Hodnett, E., Feldman, B., Duffy, C., Huber, A., Tucker, L., Hetherington, R., Tse, S., Spiegel, L., Campillo, S., Gill, N. & White, M. (2010) An Internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial. The Journal of Rheumatology, 7, 1944-1952.
33. Taylor, R., Gibson, F. & Franck, L. (2008) The experience of living with a chronic illness during adolescence: a critical review of the literature. Journal of Clinical Nursing, 17, 3083-3091.
34. Tong, A., Jones, J., Craig, J. C. & Singh-Grewal, D. (2012) Children's experiences of living with juvenile idiopathic arthritis: thematic synthesis of qualitative studies. Arthritis Care & Research, 64, 1392-1404.
35. Wells, F., Ritchie, D. & McPherson, A. (2012) 'It is life threatening but I don't mind'. A qualitative study using photo elicitation interviews to explore adolescents' experiences of renal replacement therapies. Child: Care, Health and Development, 39, 602-612.
36. Wilson, C., Pistrang, N., Woodhouse, C. & Christie, D. (2007) The psychosocial impact of bladder exstrophy in adolescence. Journal of Adolescent Health, 41, 504-508.
37. Wood, A. M., Linley, P. A., Maltby, J., Kashdan, T. B. & Hurling, R. (2011) Using personal and psychological strengths leads to increases in well-being over time: a longitudinal study and the development of the strengths use questionnaire. Personality and Individual Differences, 50, 15-19.
38. Woodgate, R. (1998) Adolescents' perspectives of chronic illness: 'It's hard'. Journal of Pediatric Nursing, 13, 210-223.