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Involving lay and professional stakeholders in the development of a research intervention for the DEPICTED Study

Lowes, Lesley Madeline ORCID:, Robling, Michael Richard ORCID:, Bennert, Kristina, Crawley, Charlotte, Hambly, Helen, Hawthorne, Kamila ORCID:, Gregory, John Welbourn ORCID: and DEPICTED Study Team 2011. Involving lay and professional stakeholders in the development of a research intervention for the DEPICTED Study. Health Expectations 14 (3) , pp. 250-260. 10.1111/j.1369-7625.2010.00625.x

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Aim: This paper focuses on stakeholders’ active involvement at key stages of the research as members of a Stakeholder Action Group (SAG), particularly in the context of lay stakeholder involvement. Some challenges that can arise and wider issues (e.g. empowerment, the impact of user involvement) are identified and explored within the literature on service user involvement in health care research, reflecting on the implications for researchers. Background: In the DEPICTED study, lay and professional stakeholders were actively involved in developing a complex research intervention. Lay stakeholders comprised teenage and adult patients with diabetes, parents and patient organization representatives. Professional stakeholders were from a range of disciplines. Methods: Three 1-day research meetings were attended by 13–17 lay stakeholders and 10–11 professional stakeholders (plus researchers). The SAG was responsible for reviewing evidence, advising on developing ideas for the research intervention and guiding plans for evaluation of the intervention in a subsequent trial. Formal evaluations were completed by stakeholders following each SAG meeting. Results: Throughout the first (developmental) stage of this two-stage study, lay and professional stakeholders participated or were actively involved in activities that provided data to inform the research intervention. Lay stakeholders identified the need for and contributed to the design of a patient-held tool, strongly influenced the detailed design and content of the research intervention and outcome questionnaire, thus making a major contribution to the trial design. Conclusion: Stakeholders, including teenagers, can be actively involved in designing a research intervention and impact significantly on study outcomes.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Healthcare Sciences
Subjects: H Social Sciences > H Social Sciences (General)
H Social Sciences > HV Social pathology. Social and public welfare
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Uncontrolled Keywords: complex research intervention ; paediatric diabetes ; service user involvement ; teenagers and parents ; The DEPICTED study
Publisher: Wiley
ISSN: 1369-6513
Date of First Compliant Deposit: 30 March 2016
Last Modified: 09 May 2023 01:26

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