Skip to main content
Top
Published in: Pediatric Rheumatology 1/2016

Open Access 01-12-2016 | Research article

“Sometimes I feel like a pharmacist”: identity and medication use among adolescents with juvenile arthritis

Authors: J. E. McDonagh, K. L. Shaw, J. Prescott, F. J. Smith, R. Roberts, N. J. Gray

Published in: Pediatric Rheumatology | Issue 1/2016

Login to get access

Abstract

Background

Taking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. One of the most important things that happen during the teenage years is the development of individual identities, which might not remain constant during this time and can be affected deeply by the diagnosis of a long-term condition. The aim of this study was to examine the relationships between identity and medication use among young people with juvenile arthritis.

Methods

A prospective qualitative study was undertaken to collect private online ‘blog’ style data from young people (aged 11–19 years) with juvenile arthritis, and their parents, to examine their views about their condition, identity, medication and use of health services. Participants were identified from a large paediatric hospital in the UK.

Results

Young people (n = 21) with a median age 14 years (range 11–17 years) posted a median (range) of 8 (1–36) blogs and parents (n = 6) posted 4 (1–12) blogs. Young people gave a strong sense of both private and public identity that was intertwined with their arthritis and treatment. It was evident that young people’s self-care was intrinsically linked to their attempts to maintain a sense of individually and socially constructed definitions of normality. The act of taking medication, and the consequences (positive or negative) of that act, had an impact both personally and socially.

Conclusions

Young people with juvenile arthritis reflect on their medication as a factor affecting their perception of themselves. Acknowledging the roles of both personal and social identity will be important in any strategies to support optimal medication use. This includes an understanding of the identity transformations that young people can experience and how decision-making may be affected by their attempts to retain pre-diagnosis identities and/or develop new social identities.
Literature
1.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
2.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
3.
go back to reference Castrejón I. Transitional Care Programs for Patients with Rheumatic Diseases: Review of the Literature. Reumatol Clin. 2012;8(1):20–6.CrossRefPubMed Castrejón I. Transitional Care Programs for Patients with Rheumatic Diseases: Review of the Literature. Reumatol Clin. 2012;8(1):20–6.CrossRefPubMed
4.
go back to reference McDonagh JE, Shaw KL. Adolescent Rheumatology Transition Care in the UK. Pediatr Ann. 2012;41(5):e8–e15.CrossRefPubMed McDonagh JE, Shaw KL. Adolescent Rheumatology Transition Care in the UK. Pediatr Ann. 2012;41(5):e8–e15.CrossRefPubMed
5.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
6.
go back to reference 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.CrossRef 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.CrossRef
7.
go back to reference Dobbels F, Shaw KL. Adherence and chronic rheumatic diseases. In McDonagh JE, White PH (Eds). Adolescent Rheumatology. Marcel Dekker, Inc. (2008) Dobbels F, Shaw KL. Adherence and chronic rheumatic diseases. In McDonagh JE, White PH (Eds). Adolescent Rheumatology. Marcel Dekker, Inc. (2008)
8.
go back to reference Shaw KL, Southwood TR, McDonagh JE. What’s in a name? Disease knowledge in juvenile idiopathic arthritis (JIA). Rheumatology. 2004;43 suppl 2:275. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
11.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
12.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
13.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
14.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
15.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
16.
go back to reference Scal P, Horvath K, Garwick A. Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum. 2009;61:52–7.CrossRefPubMed Scal P, Horvath K, Garwick A. Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum. 2009;61:52–7.CrossRefPubMed
17.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
18.
go back to reference Sabate E. Adherence to long-term therapies: Evidence for action. Switzerland: World Health Organization; 2003. Sabate E. Adherence to long-term therapies: Evidence for action. Switzerland: World Health Organization; 2003.
19.
go back to reference 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. 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.
22.
go back to reference 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. 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.
go back to reference 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. 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.
25.
go back to reference 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.CrossRef 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.CrossRef
26.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
28.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
29.
30.
go back to reference Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn. 1983;5:168–95.CrossRefPubMed Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn. 1983;5:168–95.CrossRefPubMed
31.
go back to reference Grinyer A. The biographical impact of teenage and adolescent cancer. Chronic Illn. 2007;3:265–77.CrossRefPubMed Grinyer A. The biographical impact of teenage and adolescent cancer. Chronic Illn. 2007;3:265–77.CrossRefPubMed
32.
go back to reference 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.CrossRef 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.CrossRef
33.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
35.
go back to reference 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.CrossRef 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.CrossRef
36.
go back to reference 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.CrossRef 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.CrossRef
37.
go back to reference Hale DR, Bevilacqua L, Viner RM. Adolescent Health and Adult Education and Employment: A Systematic Review. Pediatrics. 2015;136(1):128–40.CrossRefPubMed Hale DR, Bevilacqua L, Viner RM. Adolescent Health and Adult Education and Employment: A Systematic Review. Pediatrics. 2015;136(1):128–40.CrossRefPubMed
38.
go back to reference Jetha A. The impact of arthritis on the early employment experiences of young adults: A literature review. Disability Health J. 2015;8:317–24.CrossRef Jetha A. The impact of arthritis on the early employment experiences of young adults: A literature review. Disability Health J. 2015;8:317–24.CrossRef
39.
go back to reference 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.CrossRef 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.CrossRef
40.
go back to reference 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. 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.
go back to reference Goldenring JM, Rosen DS. Getting into adolescent heads: an essential update. Contemp Pediatr. 2004;21:64–90. Goldenring JM, Rosen DS. Getting into adolescent heads: an essential update. Contemp Pediatr. 2004;21:64–90.
43.
go back to reference 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]. 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].
45.
go back to reference Arnett JJ. Emerging Adulthood: The Winding Road From the Late Teens Though the Twenties. New York: Oxford University Press=; 2004. Arnett JJ. Emerging Adulthood: The Winding Road From the Late Teens Though the Twenties. New York: Oxford University Press=; 2004.
46.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
Metadata
Title
“Sometimes I feel like a pharmacist”: identity and medication use among adolescents with juvenile arthritis
Authors
J. E. McDonagh
K. L. Shaw
J. Prescott
F. J. Smith
R. Roberts
N. J. Gray
Publication date
01-12-2016
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2016
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-016-0117-1

Other articles of this Issue 1/2016

Pediatric Rheumatology 1/2016 Go to the issue