Type 1 diabetes patients' experiences of, and need for, social support after attending a structured education programme: a qualitative longitudinal investigation

Authors

  • David Rankin PhD,

    Research Fellow, Corresponding author
    1. Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
    • Correspondence: David Rankin, Research Fellow, Centre for Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, UK. Telephone: +44 131 651 3053.

      E-mail: a.d.rankin@ed.ac.uk

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  • Kath Barnard PhD,

    Chartered Health Psychologist
    1. Human Development and Health, University of Southampton, Southampton, UK
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  • Jackie Elliott PhD,

    Senior Clinical Lecturer in Diabetes / Hon. Consultant
    1. Academic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield, Sheffield, UK
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  • Debbie Cooke PhD,

    Lecturer
    1. School of Health and Social Care, University of Surrey, Guildford, UK
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  • Simon Heller FRCP,

    Professor of Clinical Diabetes
    1. Academic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield, Sheffield, UK
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  • Carla Gianfrancesco BSc,

    Specialist Diabetes Dietitian
    1. Diabetes and Endocrinology Department, Sheffield Teaching Hospitals NHSF Trust, Sheffield, UK
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  • Carolin Taylor DipN,

    Diabetes Specialist Nurse
    1. Diabetes and Endocrinology Department, Sheffield Teaching Hospitals NHSF Trust, Sheffield, UK
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  • Julia Lawton PhD,

    Professor of Health and Social Science
    1. Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
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  • and for the UK NIHR DAFNE Study Group


Abstract

Aims and objectives

To explore patients' experiences of, views about and need for, social support after attending a structured education programme for type 1 diabetes.

Background

Patients who attend structured education programmes attain short-term improvements in biomedical and quality-of-life measures but require support to sustain self-management principles over the longer term. Social support can influence patients' self-management practices; however, little is known about how programme graduates use other people's help.

Design

This study was informed by the principles of grounded theory and involved concurrent data collection and analysis. Data were analysed using an inductive, thematic approach.

Methods

In-depth interviews were undertaken postcourse, six and 12 months later, with 30 adult patients with type 1 diabetes recruited from Dose Adjustment for Normal Eating courses in the United Kingdom.

Results

Patients' preferences for social support from other people ranged from wanting minimal involvement, to benefiting from auxiliary forms of assistance, to regular monitoring and policing. New self-management skills learnt on their courses prompted and facilitated patients to seek and obtain more social support. Support received/expected from parents varied according to when patients were diagnosed, but parents' use of outdated knowledge could act as a barrier to effective support. Support sought from others, including friends/colleagues, was informed by patients' domestic/employment circumstances.

Conclusion

This study responds to calls for deeper understanding of the social context in which chronic illness self-management occurs. It highlights how patients can solicit and receive more social support from family members and friends after implementing self-care practices taught on education programmes.

Relevance to clinical practice

Health professionals including diabetes specialist nurses and dietitians should explore: patients' access to and preferences for social support; how patients might be encouraged to capitalise on social support postcourse; and new ways to inform/educate people within patients' social networks.

Ancillary