Supporting disengaged children and young people living with diabetes to self-care: a qualitative study in a socially disadvantaged and ethnically diverse urban area

Article

Sharpe, D., Rajabi, M., Harden, A., Moodambail, A. and Hakeem, V. 2021. Supporting disengaged children and young people living with diabetes to self-care: a qualitative study in a socially disadvantaged and ethnically diverse urban area. BMJ Open. 11 (Art. e046989). https://doi.org/10.1136/bmjopen-2020-046989
AuthorsSharpe, D., Rajabi, M., Harden, A., Moodambail, A. and Hakeem, V.
Abstract

Objective: To explore how to enhance services to support the self-care of children and young people (CYP) clinically considered ‘disengaged’ by diabetes services.

Design: Qualitative study

Setting: Two diabetes clinics in an ethnically diverse and socially disadvantaged urban area in the UK. Eligible participants were CYP living with Type 1 or Type 2 diabetes aged between 10 and 25 years who did not attend their last annual hospital appointment.

Participants: 22 CYP (14 female and 8 male) aged between 10 and 19 years old took part. The sample was diverse in terms of ethnicity, age at diagnosis, family composition, and presence of diabetes amongst other family members.

Data collection: Semi-structured interviews

Data analysis: Data were analysed thematically.

Results: Analysis of participant accounts confirmed the crucial importance of non-medicalised care in children and young people diabetes care. A life plan was considered as important to participants as a health plan. Participants valued the holistic support provided by friends, family members and school teachers. However, they found structural barriers in their health and educational pathways as well as disparities in the quality of support at critical moments along the life course. They actively tried to maximise their well-being by balancing life priorities against diabetes priorities. Combined, these features could undermine participants engagement with health services where personal strategies were often held back or edited out of clinical appointments in fear of condemnation.

Conclusion: We demonstrate why diabetes health teams need to appreciate the conflicting pressures experienced by CYP and to co-produce more nuanced health plans for addressing their concerns regarding identity and risk taking behaviours in the context of their life-worlds. Exploring these issues and identifying ways to better support CYP to address them more pro-actively should reduce disengagement and set realistic health outcomes that make best use of medical resources.

JournalBMJ Open
Journal citation11 (Art. e046989)
ISSN2044-6055
Year2021
PublisherBMJ Publishing Group
Accepted author manuscript
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Digital Object Identifier (DOI)https://doi.org/10.1136/bmjopen-2020-046989
Publication dates
Online13 Oct 2021
Publication process dates
Accepted23 Sep 2021
Deposited23 Sep 2021
FunderNational Institute for Health Research (NIHR)
Copyright holder© 2021 The Authors
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Bagnall, Anne-Marie, South, Jane, Trigwell, Joanne, Kinsella, Karina, White, Judy and Harden, A. 2016. National Institute for Health and Care Excellence Review 4: Community engagement – approaches to improve health: map of the literature on current and emerging community engagement policy and practice in the UK. Leeds Centre for Health Promotion Research, Leeds Beckett University / Institute for Health and Human Development, University of East London.
In memoriam: the contributions to public health research of Farah Jamal, BA, MSc, PhD
Bonell, Chris, Harden, A., Fletcher, Adam and Viner, Russell 2016. In memoriam: the contributions to public health research of Farah Jamal, BA, MSc, PhD. Journal of Epidemiology and Community Health. 70 (4), pp. 329-330. https://doi.org/10.1136/jech-2016-207197
RIX Wiki Evaluation Toolkit
Minnion, A., Kwiatkowska, G. and Sharpe, D. 2017. RIX Wiki Evaluation Toolkit. Institute for Health and Human Development, University of East London.
Promoting young people’s mental health and well-being through participation in the arts: A mixed-methods service evaluation of the Zinc Arts ArtZone programme
Wilson, C. and Sharpe, D. 2017. Promoting young people’s mental health and well-being through participation in the arts: A mixed-methods service evaluation of the Zinc Arts ArtZone programme. Journal of Applied Arts & Health. 8 (1), pp. 39-55. https://doi.org/10.1386/jaah.8.1.39_1
How to Guide: How to develop youth forums in the NHS
Sharpe, D. 2016. How to Guide: How to develop youth forums in the NHS. University of East London.
Timing of the initiation of antenatal care: An exploratory qualitative study of women and service providers in East London
Hatherall, B., Morris, Joanne, Jamal, Farah, Sweeney, Lorna, Wiggins, Meg, Kaur, Inderjeet, Renton, Adrian and Harden, A. 2016. Timing of the initiation of antenatal care: An exploratory qualitative study of women and service providers in East London. Midwifery. 36, pp. 1-7.
Shine 2014 Final Report: Social Prescribing: integrating GP and Community Assets for Health
Bertotti, M., Frostick, C., Findlay, G., Harden, A., Netuveli, G., Renton, A., Carnes, D., Sohanpal, R. and Hull, S. 2015. Shine 2014 Final Report: Social Prescribing: integrating GP and Community Assets for Health. The Health Foundation.
An examination of Chelmsford’s Night Time Economy: A report for the Safer Chelmsford Partnership commissioned through Chelmsford City Council June 2014
Sharpe, D. 2014. An examination of Chelmsford’s Night Time Economy: A report for the Safer Chelmsford Partnership commissioned through Chelmsford City Council June 2014. Chelmsford City Council.
European democratic politics in crisis?
Henn, Matt and Sharpe, D. 2014. European democratic politics in crisis? So... The School of Social Sciences Magazine. A/W, pp. 6-8.
Independent thinkers and learners: a critical evaluation of the ‘Growing Together Schools Programme’
Sharpe, D. 2014. Independent thinkers and learners: a critical evaluation of the ‘Growing Together Schools Programme’. Pastoral Care in Education. 32 (3), pp. 197-207. https://doi.org/10.1080/02643944.2014.940551
Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis
O'Mara-Eves, A, Brunton, Ginny, McDaid, G, Oliver, Sandy, Kavanagh, Josephine, Jamal, F., Matosevic, T, Harden, A. and Thomas, James 2013. Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis. Public Health Research. 1 (4).
An economic model of school-based behavioral interventions to prevent sexually transmitted infections
Cooper, Keith, Shepherd, Jonathan, Picot, Jo, Jones, Jeremy, Kavanagh, Josephine, Harden, A., Barnett-Page, Elaine, Clegg, Andrew, Hartwell, Debbie, Frampton, Geoff and Price, Alison 2012. An economic model of school-based behavioral interventions to prevent sexually transmitted infections. International Journal of Technology Assessment in Health Care. 28 (04), pp. 407-414.
The school environment and student health: a systematic review and meta-ethnography of qualitative research
Jamal, F., Fletcher, Adam, Harden, A., Wells, Helene, Thomas, James and Bonell, Chris 2013. The school environment and student health: a systematic review and meta-ethnography of qualitative research. BMC Public Health. 13 (1), p. 798.
Predictors of the timing of initiation of antenatal care in an ethnically diverse urban cohort in the UK
Cresswell, Jenny A, Yu, Ge, Hatherall, B., Morris, Joanne, Jamal, Farah, Harden, A. and Renton, A. 2013. Predictors of the timing of initiation of antenatal care in an ethnically diverse urban cohort in the UK. BMC Pregnancy and Childbirth. 13 (1), p. 103.
Systematic review of the effects of schools and school environment interventions on health: evidence mapping and synthesis
Bonell, C., Farah, Jamal, Harden, A., Wells, H., Parry, W., Fletcher, A., Petticrew, M., Thomas, J., Whitehead, M., Campbell, R., Murphy, S. and Moore, L. 2013. Systematic review of the effects of schools and school environment interventions on health: evidence mapping and synthesis. Public Health Research. 1 (1).
Consulting with young people to inform systematic reviews: an example from a review on the effects of schools on health
Jamal, F. and Harden, A. 2013. Consulting with young people to inform systematic reviews: an example from a review on the effects of schools on health. UEL Research and Knowledge Exchange Conference 2013. University of East London, London 26 Jun 2013 London University of East London.
Getting older and living longer with HIV: Findings from a pilot study conducted in Newham
Foster, Nena, Freeman, Emily, Harden, A., Tobi, Patrick and Fakoya, Ade 2012. Getting older and living longer with HIV: Findings from a pilot study conducted in Newham. UEL Research and Knowledge Exchange Conference 2012. University of East London, London 03 May 2012 London University of East London.
'It takes a lot to build trust’. Recognition and Telling: Developing Earlier Routes to Help for Children and Young People
Cossar, J., Brandon, B., Bailey, S., Belderson, P., Biggart, L. and Sharpe, D. 2013. 'It takes a lot to build trust’. Recognition and Telling: Developing Earlier Routes to Help for Children and Young People. Office of the Children’s Commissioner.
The school environment and student health: a systematic review and meta-ethnography of qualitative research
Jamal, Farah, Fletcher, Adam, Harden, A., Wells, Helene, Thomas, James and Bonell, Chris 2013. The school environment and student health: a systematic review and meta-ethnography of qualitative research. BMC Public Health. 13 (1), p. 798.
The contribution of a social enterprise to the building of social capital in a disadvantaged urban area of London
Bertotti, M., Harden, A., Renton, A. and Sheridan, K. 2012. The contribution of a social enterprise to the building of social capital in a disadvantaged urban area of London. Community Development Journal. 47 (2), pp. 168-183.
A scoping review of the evidence relevant to life checks for young people aged 9 to 14 years
Harden, A. 2007. A scoping review of the evidence relevant to life checks for young people aged 9 to 14 years. London EPPI-Centre, Social Science Research Unit, Institute of Education, University of London.
Thematic synthesis
Harden, A. and Thomas, James 2008. Thematic synthesis. ESRC Research Methods Festival. St Catherine’s College, Oxford 30 Jun - 03 Jul 2008 Southampton ESRC National Centre for Research Methods.
Testing and building theories: mixed methods synthesis
Harden, A. 2008. Testing and building theories: mixed methods synthesis. ESRC Research Methods Festival. St Catherine’s College, Oxford 30 Jun - 03 Jul 2008 Southampton ESRC National Centre for Research Methods.
Critical appraisal and qualitative research: exploring sensitivity analysis
Harden, A. 2008. Critical appraisal and qualitative research: exploring sensitivity analysis. ESRC Research Methods Festival. St Catherine’s College, Oxford 30 Jun - 03 Jul 2008
Social and environmental interventions to reduce childhood obesity: a systematic map of reviews
Harden, A. 2008. Social and environmental interventions to reduce childhood obesity: a systematic map of reviews. London EPPI-Centre, Social Science Research Unit, Institute of Education, University of London.
Including diverse groups of children and young people in health promotion and public health research: a review of methodology and practice
Harden, A. 2008. Including diverse groups of children and young people in health promotion and public health research: a review of methodology and practice. London EPPI-Centre, Social Science Research Unit, Institute of Education, University of London.
Health promotion, inequalities and young people’s health: a systematic review of research
Harden, A. 2008. Health promotion, inequalities and young people’s health: a systematic review of research. London EPPI-Centre, Social Science Research Unit, Institute of Education, University of London.
A review of effectiveness, including cost effectiveness wherever possible, of commissioned healthy weight-related projects in City and Hackney: final report
Harden, A., Estacio, Emee Vida, Tobi, Patrick, Adams-Eaton, Faye, Bertotti, Marcello and Lais, Shahana 2009. A review of effectiveness, including cost effectiveness wherever possible, of commissioned healthy weight-related projects in City and Hackney: final report. London Institute of Health and Human Development, University of East London.
A project to assist Family Actions's Building Bridges practitioners with the use of the Index of Family Relations as an outcome measurement: final report
Harden, A., Lloyd-Reichling, E., Mcdermott, M., Potter, Sylvia and Sayeed, Zahirun 2009. A project to assist Family Actions's Building Bridges practitioners with the use of the Index of Family Relations as an outcome measurement: final report. London University of East London.
Methods for the thematic synthesis of qualitative research in systematic reviews
Thomas, James and Harden, A. 2008. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology. 8 (45), pp. 1471-2288.
The influence of environmental factors on the generalisability of public health research evidence: physical activity as a worked example
Watts, P., Phillips, Gemma, Harden, A. and Renton, A. 2011. The influence of environmental factors on the generalisability of public health research evidence: physical activity as a worked example. International Journal of Behavioural Nutrition and Physical Activity. 8 (1), pp. 1479-5868.
Creating and Maintaining a Healthy Stratford City: Principles and Practices for Success
Sampson, Alice, Harden, A., Brimicombe, A., Bertotti, Marcello, Lais, Shahana, Barrow-Guevera, Gail, Boniwell, Ilona, Joseph, Hipolina, Sheridan, Kevin, Adams-Eaton, Faye, Tobi, Patrick and Li, Yang 2010. Creating and Maintaining a Healthy Stratford City: Principles and Practices for Success. University of East London, Centre for Institutional Studies.
Protocol for a systematic review of the effects of schools and school-environment interventions on health: evidence mapping and syntheses
Harden, A. and Jamal, Farah 2011. Protocol for a systematic review of the effects of schools and school-environment interventions on health: evidence mapping and syntheses. BMC Public Health. 11 (453).
Integrating qualitative research with trials in systematic reviews
Thomas, James, Harden, A., Oakley, Ann, Oliver, Sandy, Sutcliffe, Katy, Rees, Rebecca, Brunton, Ginny and Kavanagh, Josephine 2004. Integrating qualitative research with trials in systematic reviews. British Medical Journal. 328 (7446), pp. 1010-1012.
Applying systematic review methods to studies of people’s views: an example from public health research
Harden, A., Garcia, Jo, Oliver, Sandy, Rees, Rebecca, Shepherd, Jonathan, Brunton, Ginny and Oakley, Ann 2004. Applying systematic review methods to studies of people’s views: an example from public health research. Journal of Epidemiology and Community Health. 58 (9), pp. 794-800.
A project to assist Family Action’s Building Bridges practitioners with the use of the Index of Family Relations as an outcome measurement (Final Report).
Harden, A., Lloyd-Reichling, E., Mcdermott, M., Potter, Sylvia and Sayeed, Zahirun 2009. A project to assist Family Action’s Building Bridges practitioners with the use of the Index of Family Relations as an outcome measurement (Final Report). Family Action, Institute of Health and Human Development and CASS School of Education, University of East London.
Teenage pregnancy and social disadvantage: systematic review integrating controlled trials and qualitative studies
Harden, A., Brunton, Ginny, Fletcher, Adam and Oakley, Ann 2009. Teenage pregnancy and social disadvantage: systematic review integrating controlled trials and qualitative studies. British Medical Journal. 339 (121).
Methods for the thematic synthesis of qualitative research in systematic reviews
Thomas, James and Harden, A. 2008. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology. 8 (45).