“You can't do this, you've arthritis": Exploring the experiences of education and employment of young people with arthritis

Albert Farre, Sara Ryan, Abigail McNiven, Sue Ziebland, Janet E. McDonagh

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Abstract

Introduction: Vocational development is an integral component of adolescence with several key educational transitions occurring during this stage of life. In the context of long term health conditions and/or disability including rheumatic disease, vocational morbidities are increasingly recognised. However, only a few studies to date have used qualitative methods to report on the perspective of young people with arthritis [1,2].
Objectives: To understand the experiences of education and employment of educational and vocational outcomes for young people with arthritis, from the perspective of young people themselves.
Methods: We used secondary analysis of narrative and semi-structured interviews (n=49) which had been video or audio recorded from a primary qualitative study on the experiences and information and support needs of young people with arthritis [3]. A purposive, maximum variation sampling strategy had been employed. The dataset consisted of 40 young people. The dataset consisted of 39 young people (median age at interview 20, range 10 to 28 years; median age at diagnosis 11, range 2 months to 22 years) and 10 carers of young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Data analysis for the primary study combined a thematic approach with the grounded theory technique of constant comparison. NVivo software was used to assist data management and coding. The secondary analysis process aligned with Heaton’s categories of supra and supplementary analysis [4]. All 49 original transcripts were re-coded with the overarching aim to identify all material relevant to vocational experiences. We also undertook a series of workshop meetings in which the re-coded data were discussed and reviewed jointly by the authorship group to add a further layer of scrutiny, and debate and refine the emerging findings.
Results: Three key themes were identified: (i) The impact of the unpredictability of arthritis symptoms on education and vocation; (ii) the negotiation of disclosure, understanding, support and flexibility in the workplace or educational setting; and (iii) the appraisal and reappraisal of life’s goals in the context of an uncertain prognosis. Findings illustrated how young people with arthritis are faced with a range of challenges and disruptions in their everyday life at a time when key developmental tasks occur, including the educational and vocational aspects of their development. Appropriate support and flexibility in the workplace or educational setting were identified as enablers to successful educational and vocational outcomes. However, negotiating disclosure was not a straightforward process for such young people, with a range of concerns and
expectations acting as barriers to disclosure. Furthermore, participants’ accounts revealed how disclosure is a necessary but not always sufficient step towards achieving an understanding and supportive environment in school or the workplace.
Conclusion: There is a need to strengthen the health-school/work interface to improve the educational and vocational outcomes for young people with arthritis. Addressing disclosure with the young person and employing effective interventions to improve communication, understanding and awareness beyond the clinical domain and across workplace/educational settings are key challenges for health professionals and important areas for further research.
[1] Hanson H, Hart RI, Thompson B et al. Disabil Rehabil. 2017 ; 13:1-8
[2]. Shaw KL, Hackett J, Southwood TR, McDonagh JE . Br J Occupational Therapy 2006;69(3): 98-105.
[3] McDonagh JE, Simmons B, Raisanen U, Zeibland S. Rheumatology (2014) 53 (suppl 3): iii18.
[4] Heaton, J., 2004. Reworking qualitative data. Sage, London.
Original languageEnglish
Article numberP401
JournalPediatric Rheumatology
Volume16 (Suppl 2)
Issue number52
DOIs
Publication statusPublished - 22 Aug 2018

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Arthritis
Disclosure
Education
Workplace
Negotiating
Interviews
Authorship
School Health Services
Occupational Therapy
Health
Rheumatology
Rheumatic Diseases
Occupations
Caregivers
Software
Communication
Morbidity
Research

Cite this

Farre, Albert ; Ryan, Sara ; McNiven, Abigail ; Ziebland, Sue ; McDonagh, Janet E. / “You can't do this, you've arthritis" : Exploring the experiences of education and employment of young people with arthritis. In: Pediatric Rheumatology. 2018 ; Vol. 16 (Suppl 2), No. 52.
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abstract = "Introduction: Vocational development is an integral component of adolescence with several key educational transitions occurring during this stage of life. In the context of long term health conditions and/or disability including rheumatic disease, vocational morbidities are increasingly recognised. However, only a few studies to date have used qualitative methods to report on the perspective of young people with arthritis [1,2].Objectives: To understand the experiences of education and employment of educational and vocational outcomes for young people with arthritis, from the perspective of young people themselves.Methods: We used secondary analysis of narrative and semi-structured interviews (n=49) which had been video or audio recorded from a primary qualitative study on the experiences and information and support needs of young people with arthritis [3]. A purposive, maximum variation sampling strategy had been employed. The dataset consisted of 40 young people. The dataset consisted of 39 young people (median age at interview 20, range 10 to 28 years; median age at diagnosis 11, range 2 months to 22 years) and 10 carers of young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Data analysis for the primary study combined a thematic approach with the grounded theory technique of constant comparison. NVivo software was used to assist data management and coding. The secondary analysis process aligned with Heaton’s categories of supra and supplementary analysis [4]. All 49 original transcripts were re-coded with the overarching aim to identify all material relevant to vocational experiences. We also undertook a series of workshop meetings in which the re-coded data were discussed and reviewed jointly by the authorship group to add a further layer of scrutiny, and debate and refine the emerging findings.Results: Three key themes were identified: (i) The impact of the unpredictability of arthritis symptoms on education and vocation; (ii) the negotiation of disclosure, understanding, support and flexibility in the workplace or educational setting; and (iii) the appraisal and reappraisal of life’s goals in the context of an uncertain prognosis. Findings illustrated how young people with arthritis are faced with a range of challenges and disruptions in their everyday life at a time when key developmental tasks occur, including the educational and vocational aspects of their development. Appropriate support and flexibility in the workplace or educational setting were identified as enablers to successful educational and vocational outcomes. However, negotiating disclosure was not a straightforward process for such young people, with a range of concerns andexpectations acting as barriers to disclosure. Furthermore, participants’ accounts revealed how disclosure is a necessary but not always sufficient step towards achieving an understanding and supportive environment in school or the workplace.Conclusion: There is a need to strengthen the health-school/work interface to improve the educational and vocational outcomes for young people with arthritis. Addressing disclosure with the young person and employing effective interventions to improve communication, understanding and awareness beyond the clinical domain and across workplace/educational settings are key challenges for health professionals and important areas for further research.[1] Hanson H, Hart RI, Thompson B et al. Disabil Rehabil. 2017 ; 13:1-8[2]. Shaw KL, Hackett J, Southwood TR, McDonagh JE . Br J Occupational Therapy 2006;69(3): 98-105.[3] McDonagh JE, Simmons B, Raisanen U, Zeibland S. Rheumatology (2014) 53 (suppl 3): iii18.[4] Heaton, J., 2004. Reworking qualitative data. Sage, London.",
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“You can't do this, you've arthritis" : Exploring the experiences of education and employment of young people with arthritis. / Farre, Albert; Ryan, Sara; McNiven, Abigail ; Ziebland, Sue; McDonagh, Janet E.

In: Pediatric Rheumatology, Vol. 16 (Suppl 2), No. 52, P401, 22.08.2018.

Research output: Contribution to journalMeeting abstract

TY - JOUR

T1 - “You can't do this, you've arthritis"

T2 - Exploring the experiences of education and employment of young people with arthritis

AU - Farre, Albert

AU - Ryan, Sara

AU - McNiven, Abigail

AU - Ziebland, Sue

AU - McDonagh, Janet E.

PY - 2018/8/22

Y1 - 2018/8/22

N2 - Introduction: Vocational development is an integral component of adolescence with several key educational transitions occurring during this stage of life. In the context of long term health conditions and/or disability including rheumatic disease, vocational morbidities are increasingly recognised. However, only a few studies to date have used qualitative methods to report on the perspective of young people with arthritis [1,2].Objectives: To understand the experiences of education and employment of educational and vocational outcomes for young people with arthritis, from the perspective of young people themselves.Methods: We used secondary analysis of narrative and semi-structured interviews (n=49) which had been video or audio recorded from a primary qualitative study on the experiences and information and support needs of young people with arthritis [3]. A purposive, maximum variation sampling strategy had been employed. The dataset consisted of 40 young people. The dataset consisted of 39 young people (median age at interview 20, range 10 to 28 years; median age at diagnosis 11, range 2 months to 22 years) and 10 carers of young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Data analysis for the primary study combined a thematic approach with the grounded theory technique of constant comparison. NVivo software was used to assist data management and coding. The secondary analysis process aligned with Heaton’s categories of supra and supplementary analysis [4]. All 49 original transcripts were re-coded with the overarching aim to identify all material relevant to vocational experiences. We also undertook a series of workshop meetings in which the re-coded data were discussed and reviewed jointly by the authorship group to add a further layer of scrutiny, and debate and refine the emerging findings.Results: Three key themes were identified: (i) The impact of the unpredictability of arthritis symptoms on education and vocation; (ii) the negotiation of disclosure, understanding, support and flexibility in the workplace or educational setting; and (iii) the appraisal and reappraisal of life’s goals in the context of an uncertain prognosis. Findings illustrated how young people with arthritis are faced with a range of challenges and disruptions in their everyday life at a time when key developmental tasks occur, including the educational and vocational aspects of their development. Appropriate support and flexibility in the workplace or educational setting were identified as enablers to successful educational and vocational outcomes. However, negotiating disclosure was not a straightforward process for such young people, with a range of concerns andexpectations acting as barriers to disclosure. Furthermore, participants’ accounts revealed how disclosure is a necessary but not always sufficient step towards achieving an understanding and supportive environment in school or the workplace.Conclusion: There is a need to strengthen the health-school/work interface to improve the educational and vocational outcomes for young people with arthritis. Addressing disclosure with the young person and employing effective interventions to improve communication, understanding and awareness beyond the clinical domain and across workplace/educational settings are key challenges for health professionals and important areas for further research.[1] Hanson H, Hart RI, Thompson B et al. Disabil Rehabil. 2017 ; 13:1-8[2]. Shaw KL, Hackett J, Southwood TR, McDonagh JE . Br J Occupational Therapy 2006;69(3): 98-105.[3] McDonagh JE, Simmons B, Raisanen U, Zeibland S. Rheumatology (2014) 53 (suppl 3): iii18.[4] Heaton, J., 2004. Reworking qualitative data. Sage, London.

AB - Introduction: Vocational development is an integral component of adolescence with several key educational transitions occurring during this stage of life. In the context of long term health conditions and/or disability including rheumatic disease, vocational morbidities are increasingly recognised. However, only a few studies to date have used qualitative methods to report on the perspective of young people with arthritis [1,2].Objectives: To understand the experiences of education and employment of educational and vocational outcomes for young people with arthritis, from the perspective of young people themselves.Methods: We used secondary analysis of narrative and semi-structured interviews (n=49) which had been video or audio recorded from a primary qualitative study on the experiences and information and support needs of young people with arthritis [3]. A purposive, maximum variation sampling strategy had been employed. The dataset consisted of 40 young people. The dataset consisted of 39 young people (median age at interview 20, range 10 to 28 years; median age at diagnosis 11, range 2 months to 22 years) and 10 carers of young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Data analysis for the primary study combined a thematic approach with the grounded theory technique of constant comparison. NVivo software was used to assist data management and coding. The secondary analysis process aligned with Heaton’s categories of supra and supplementary analysis [4]. All 49 original transcripts were re-coded with the overarching aim to identify all material relevant to vocational experiences. We also undertook a series of workshop meetings in which the re-coded data were discussed and reviewed jointly by the authorship group to add a further layer of scrutiny, and debate and refine the emerging findings.Results: Three key themes were identified: (i) The impact of the unpredictability of arthritis symptoms on education and vocation; (ii) the negotiation of disclosure, understanding, support and flexibility in the workplace or educational setting; and (iii) the appraisal and reappraisal of life’s goals in the context of an uncertain prognosis. Findings illustrated how young people with arthritis are faced with a range of challenges and disruptions in their everyday life at a time when key developmental tasks occur, including the educational and vocational aspects of their development. Appropriate support and flexibility in the workplace or educational setting were identified as enablers to successful educational and vocational outcomes. However, negotiating disclosure was not a straightforward process for such young people, with a range of concerns andexpectations acting as barriers to disclosure. Furthermore, participants’ accounts revealed how disclosure is a necessary but not always sufficient step towards achieving an understanding and supportive environment in school or the workplace.Conclusion: There is a need to strengthen the health-school/work interface to improve the educational and vocational outcomes for young people with arthritis. Addressing disclosure with the young person and employing effective interventions to improve communication, understanding and awareness beyond the clinical domain and across workplace/educational settings are key challenges for health professionals and important areas for further research.[1] Hanson H, Hart RI, Thompson B et al. Disabil Rehabil. 2017 ; 13:1-8[2]. Shaw KL, Hackett J, Southwood TR, McDonagh JE . Br J Occupational Therapy 2006;69(3): 98-105.[3] McDonagh JE, Simmons B, Raisanen U, Zeibland S. Rheumatology (2014) 53 (suppl 3): iii18.[4] Heaton, J., 2004. Reworking qualitative data. Sage, London.

U2 - 10.1186/s12969-018-0265-6

DO - 10.1186/s12969-018-0265-6

M3 - Meeting abstract

VL - 16 (Suppl 2)

JO - Pediatric Rheumatology

JF - Pediatric Rheumatology

SN - 1546-0096

IS - 52

M1 - P401

ER -