Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

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Abstract

Background: Type 1 diabetes (T1D) is an auto-immune condition which requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults (18-30 year olds) with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory.

Methods: Intervention development consisted of 4 phases: 1) the formation of a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults’ diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention.

Results: The YAP resulted in meaningful involvement between young adults, researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making.

Conclusions: This study described the systematic development of an intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process.

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Most cited references 24

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Type 1 diabetes

Denis Daneman (2006)

Type 1 diabetes accounts for only about 5-10% of all cases of diabetes; however, its incidence continues to increase worldwide and it has serious short-term and long-term implications. The disorder has a strong genetic component, inherited mainly through the HLA complex, but the factors that trigger onset of clinical disease remain largely unknown. Management of type 1 diabetes is best undertaken in the context of a multidisciplinary health team and requires continuing attention to many aspects, including insulin administration, blood glucose monitoring, meal planning, and screening for comorbid conditions and diabetes-related complications. These complications consist of microvascular and macrovascular disease, which account for the major morbidity and mortality associated with type 1 diabetes. Newer treatment approaches have facilitated improved outcomes in terms of both glycaemic control and reduced risks for development of complications. Nonetheless, major challenges remain in the development of approaches to the prevention and management of type 1 diabetes and its complications.

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Glycaemic control of Type 1 diabetes in clinical practice early in the 21st century: an international comparison.

J. A. McKnight, S. H. Wild, M. J. E. Lamb … (2015)

Improving glycaemic control in people with Type 1 diabetes is known to reduce complications. Our aim was to compare glycaemic control among people with Type 1 diabetes using data gathered in regional or national registries.

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Patient participation as dialogue: setting research agendas.

Tineke Abma, Jacqueline Broerse (2010)

Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue. We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities. The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns. The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions.

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Author and article information

Contributors

Deirdre M.J. Walsh: Role: Project AdministrationRole: Writing – Original Draft Preparation

ORCID: https://orcid.org/0000-0003-4255-299X

Lisa Hynes: Role: ConceptualizationRole: Formal AnalysisRole: Funding AcquisitionRole: MethodologyRole: Writing – Review & Editing

Mary Clare O'Hara: Role: ConceptualizationRole: Funding AcquisitionRole: MethodologyRole: Project AdministrationRole: Writing – Review & Editing

ORCID: https://orcid.org/0000-0002-3187-0127

Jenny Mc Sharry: Role: Writing – Review & Editing

ORCID: https://orcid.org/0000-0001-5459-1588

Séan F. Dinneen: Role: ConceptualizationRole: Funding AcquisitionRole: MethodologyRole: SupervisionRole: Writing – Review & Editing

ORCID: https://orcid.org/0000-0002-6636-0493

Molly Byrne: Role: ConceptualizationRole: Funding AcquisitionRole: MethodologyRole: SupervisionRole: Writing – Original Draft PreparationRole: Writing – Review & Editing

ORCID: https://orcid.org/0000-0001-8900-4320

Journal

Journal ID (nlm-ta): HRB Open Res

Journal ID (iso-abbrev): HRB Open Res

Journal ID (pmc): HRB Open Res

Title: HRB Open Research

Publisher: F1000 Research Limited (London, UK )

ISSN (Electronic): 2515-4826

Publication date (Electronic): 2 August 2018

Publication date Collection: 2018

Volume: 1

Electronic Location Identifier: 8

Affiliations

[1 ]Health Behaviour Change Research Group, School of Psychology, National University of Ireland, Galway, Galway, H91 EV56, Ireland

[2 ]School of Medicine, National University of Ireland, Galway, Galway, H91 V4AY, Ireland

[3 ]SPLAT (Pediatric Lab for Adherence and Transition), West Virginia University, Morgantown, WV, 26506, USA

[4 ]Research and Development, Strategic Planning and Transformation, Health Service Executive, Dublin 8, D08 W2A8, Ireland

[5 ]Endocrinology and Diabetes Centre, Galway University Hospitals, Galway, H91 YR71, Ireland

[1 ]Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK

[1 ]Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles, CA, USA

Author notes

[a ] deirdre.m.walsh@ 123456nuigalway.ie

No competing interests were disclosed.

Competing interests: No competing interests were disclosed.

Author information

Deirdre M.J. Walsh https://orcid.org/0000-0003-4255-299X

Mary Clare O'Hara https://orcid.org/0000-0002-3187-0127

Jenny Mc Sharry https://orcid.org/0000-0001-5459-1588

Séan F. Dinneen https://orcid.org/0000-0002-6636-0493

Molly Byrne https://orcid.org/0000-0001-8900-4320

Article

DOI: 10.12688/hrbopenres.12803.2

PMC ID: 6973524

PubMed ID: 32002502

SO-VID: 41900db8-a248-466c-a0a3-fd56d8fe0519

License:

This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

History

Date accepted : 30 July 2018

Funding

Funded by: Health Research Board

Award ID: [HRA-2013-HSR-316]

Award ID: [KEDS-2015-1644]

Award ID: [DIFA_2017-034]

Health Research Board Ireland [HRA-2013-HSR-316], [KEDS-2015-1644], [DIFA_2017-034]

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

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Clinical Social Work and Health Intervention

Most cited references 24

Type 1 diabetes

Glycaemic control of Type 1 diabetes in clinical practice early in the 21st century: an international comparison.

Patient participation as dialogue: setting research agendas.

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