"Sometimes I feel like a pharmacist": Identity and medication use among adolescents with juvenile arthritis

Pediatric Rheumatology

Volumn 14, Issue 1, 2016, Pages

  McDonagh, J E ^a   Shaw, K L ^b   Prescott, J ^c   Smith, F J ^d   Roberts, R ^e   Gray, N J ^f  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^c UNIVERSITY OF BOLTON   (United Kingdom)

^d UNIVERSITY OF LONDON   (United Kingdom)

^e London Research Institute Cancer   (United Kingdom)

^f Green Line Consulting Ltd   (United Kingdom)

Author keywords

Identity; Medication; Qualitative; Rheumatology; Young people

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; BLOGGING; CHILD; DRUG USE; EGO IDENTITY; FEMALE; HUMAN; IDENTITY; JUVENILE RHEUMATOID ARTHRITIS; MALE; PRIORITY JOURNAL; PROSPECTIVE STUDY; QUALITATIVE RESEARCH; SELF CARE; SOCIAL STATUS; UNITED KINGDOM; ARTHRITIS, JUVENILE; ATTITUDE TO HEALTH; PHARMACIST; PSYCHOLOGY; SELF CONCEPT; SOCIAL BEHAVIOR;

ANTIRHEUMATIC AGENT;

ADOLESCENT; ANTIRHEUMATIC AGENTS; ARTHRITIS, JUVENILE; ATTITUDE TO HEALTH; CHILD; FEMALE; HUMANS; MALE; PHARMACISTS; PROSPECTIVE STUDIES; QUALITATIVE RESEARCH; SELF CONCEPT; SOCIAL IDENTIFICATION;

EID: 84992162483     PISSN: None     EISSN: 15460096     Source Type: Journal    
DOI: 10.1186/s12969-016-0117-1     Document Type: Article

References (46)

1. Patton GC, Sawyer SM, Santelli JS, Ross DA, Afifi R, Allen NB, Arora M, Azzopardi P, Baldwin W, Bonell C, Kakuma R, Kennedy E, Mahon J, McGovern T, Mokdad AH, Patel V, Petroni S, Reavley N, Taiwo K, Waldfogel J, Wickremarathne D, Barroso C, Bhutta Z, Fatusi AO, Mattoo A, Diers J, Fang J, Ferguson J, Ssewamala F, Viner RM. Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 2016;387(10036):2423-78.
2. McDonagh JE, Foster H, Hall MA, Chamberlain MA on behalf of the BPRG. Audit of rheumatology services for adolescents and young adults in the UK. Rheumatology. 2000;39:596-602. 602.
3. Castrejón I. Transitional Care Programs for Patients with Rheumatic Diseases: Review of the Literature. Reumatol Clin. 2012;8(1):20-6.
4. McDonagh JE, Shaw KL. Adolescent Rheumatology Transition Care in the UK. Pediatr Ann. 2012;41(5):e8-e15.
5. Lawson EF, Hersh AO, Applebaum MA, Yelin EH, Okumura MJ, von Scheven E. Self-management skills in adolescents with chronic rheumatic disease: A cross-sectional survey. Pediatr Rheumatol Online J. 2011;9:35.
6. 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. 2012;64:1392-404.
7. Dobbels F, Shaw KL. Adherence and chronic rheumatic diseases. In McDonagh JE, White PH (Eds). Adolescent Rheumatology. Marcel Dekker, Inc. (2008)
8. Shaw KL, Southwood TR, McDonagh JE. What's in a name? Disease knowledge in juvenile idiopathic arthritis (JIA). Rheumatology. 2004;43 suppl 2:275.
9. McDonagh JE, Southwood TR, Shaw KL. British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology. 2007;46(1):161-8.
10. Christie D, Viner R. Adolescent development. BMJ. 2005;330:301-4.
11. Hilderson D, Moons P, Westhovens R, Wouters C. Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare. Rheumatol Int. 2012;32:3887-96.
12. van Staa A, Jedeloo S, van der Stege H, On Your Own Feet Research Group. "What we want": chronically ill adolescents' preferences and priorities for improving health care. Patient Prefer Adherence. 2011;5:291-305.
13. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548-53.
14. Ammerlaan JW, Scholtus LW, Bijlsma HJWJ, Prakken BJ, Kruize AA. An urge for change: Transitional care for young adults with juvenile idiopathic arthritis. Patient Educ Couns. 2013;92:127-9.
15. Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A, Malleson P, McGrath PJ, Yeung RS, Feldman BM. Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Rheum. 2008;59:65-72.
16. Scal P, Horvath K, Garwick A. Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum. 2009;61:52-7.
17. Robertson LP, McDonagh JE, Southwood TR, Shaw KL. British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on. A multicentre UK audit of the transfer of adolescents with Juvenile Idiopathic Arthritis JIA from paediatric to adult centred care. Ann Rheum Dis. 2006;65:74-80.
18. Sabate E. Adherence to long-term therapies: Evidence for action. Switzerland: World Health Organization; 2003.
19. Hogg, M. A., &c Tindale, R. S. (2005). Social identity, influence, and communication in small groups. In J. Harwood & H. Giles (eds), Intergroup communication: Multiple Perspectives (pp141-164), New York: Peter Lang.
20. Gray NJ, McDonagh JE, Harvey K, Prescott J, Shaw KL, Smith FJ, Stephenson R, Terry D, Fleck K, Roberts R. Arthriting: Exploring the relationship between identity and medicines use, and to identify the contribution of medicines and pharmacy services, for the care of young people with arthritis. Final report. Pharmacy Research UK, London; December 2013. http://www.pharmacyresearchuk.org/waterway/wp-content/uploads/2013/07/Arthriting-full-report-final-formatted-12dec13.pdf last Accessed 2 Sept 2016)
21. Prescott J, Gray NJ, Smith FJ, McDonagh JE. Blogging as a viable research methodology for young people with arthritis: A qualitative study. J Med Internet Res. 2015;17(3):e61. doi: 10.2196/jmir.3608.
22. Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, He X, Maldonado-Cocco J, Orozco-Alcala J, Prieur AM, Suarez-Almazor ME, Woo P; International League of Associations for Rheumatology. International League of Associations for rheumatology classification of juvenile idiopathic arthritis: 2nd revision, Edmonton, 2001 J Rheumatol. 2004 31(2):390-2.
23. Becker H, Geer B. Participant observation: the analysis of qualitative field data. In: Burgess R, editor. Field research: a sourcebook and field manual. London: Allen and Unwin; 1982. p. 53-61.
24. Hsieh H-F, Shannon SE. Three approaches to content analysis. Qual Health Res. 2005;15:1277-88.
25. Hart RI, McDonagh JE, Thompson B, Foster HE, Kay L, Myers A, Rapley T. "Being'as normal as possible': How young people (aged 16-25 years) evaluate the risks and benefits of treatment for inflammatory arthritis. Arthritis Care Res. 2016;68(9):1288-94.
26. Wright J, Elwell L, McDonagh JE, Kelly DA, Wray J. 'It's hard but you've just gotta get on with it' - The experiences of growing-up with a liver transplant. Psychol Health. 2015;2:1-29.
27. Atkin K, Ahmad WIU. Living a "normal" life: Young people coping with thalassaemia major or sickle cell disorder. Soc Sci Med. 2001;53:615-26.
28. Williams B, Corlett J, Dowell JS, Coyle J, Mukhopadhyay S. I've never not had it so I don't really know what it's like not to: nondifference and biographical disruption among children and young people with cystic fibrosis. Qual Health Res. 2009;19:1443-55.
29. Bury MR. Chronic illness as a biographical disruption. Sociol Health Illn. 1982;4:167-82.
30. Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn. 1983;5:168-95.
31. Grinyer A. The biographical impact of teenage and adolescent cancer. Chronic Illn. 2007;3:265-77.
32. Hughes B, Russell R, Paterson K. Nothing to be had 'off the peg': consumption, identity and the immobilization of young disabled people. Disability Soc. 2005;20:3-17.
33. Buckingham, D. The Impact of the Commercial World on Children's Wellbeing. Report of an Independent Assessment. For the Department for Children, Schools and Families and the Department for Culture, Media and Sport. DCSF Publications. 2009.
34. Newbould J, Smith F, Francis S. 'I'm fine doing it on my own': partnerships between young people and their parents in the management of medication for asthma and diabetes. J Child Health Care. 2008;12:116-28.
35. Haverman L, Grootenhuis MA, van den Berg JM, van Veenendaal M, Dolman KM, Swart JF, Kuijpers TW, van Rossum MA. Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a Web-based survey. Arthritis Care Res. 2012;64:694-703.
36. Shaw KL, Hackett J, Southwood TR, McDonagh JE. The Prevocational and Early employment needs of adolescents with juvenile idiopathic arthritis: the adolescent perspective. Br J Occup Ther. 2006;69(3):98-105.
37. Hale DR, Bevilacqua L, Viner RM. Adolescent Health and Adult Education and Employment: A Systematic Review. Pediatrics. 2015;136(1):128-40.
38. Jetha A. The impact of arthritis on the early employment experiences of young adults: A literature review. Disability Health J. 2015;8:317-24.
39. Jetha A, Badley E, Beaton D, Fortin PR, Shiff NJ, Gignac MA. Unpacking early work experiences of young adults with rheumatic disease: an examination of absenteeism, job disruptions and productivity loss. Arthritis Care Res. 2015;67(9):1246-54.
40. Turner JC, Onorato RS. Social identity, personality, and the self-concept: A self-categorization Perspective. In: Tyler TR, Kramer RM, John OP, editors. The psychology of the social self. Mahwah: Lawrence Erlbaum Associates; 1999. p. 11-46.
41. Goldenring JM, Rosen DS. Getting into adolescent heads: an essential update. Contemp Pediatr. 2004;21:64-90.
42. Wells CK, McMorris BJ, Horvath KJ, Garwick AW, Scal PB. Youth report of healthcare transition counseling and autonomy support from their rheumatologist. Pediatr Rheumatol Online J. 2012;10(1):36. doi: 10.1186/1546-0096-10-36.
43. Boisen KA, Hertz PG, Blix C, Teilmann G. Is HEADS in our heads? Health risk behavior is not routinely discussed with young people with chronic conditions. Int J Adolesc Med Health. 2015 Sep;11 [Epub ahead of print].
44. Gray NJ, McDonagh JE, Barker C, Burton J, Prescott J, Shaw KL, Smith FJ, Terry D. Exploring the perceived and potential medicines optimisation role of pharmacy for young people with long-term conditions, through the case study of juvenile arthritis. Final report. London: Pharmacy Research UK; 2016. http://www.pharmacyresearchuk.org/our-research/our-projects/potential-medicines-optimisation-role-pharmacy-young-people-long-term-conditions/. Accessed 12 Oct 2016.
45. Arnett JJ. Emerging Adulthood: The Winding Road From the Late Teens Though the Twenties. New York: Oxford University Press=; 2004.
46. Majeed-Ariss R, Baildam E, Campbell M, Chieng A, Fallon D, Hall A, McDonagh JE, Stones SR, Thomson W, Swallow V. Apps and Adolescents: A Systematic Review of Adolescents' Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions. J Med Internet Res. 2015;17(12):e287.