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

Dados Bibliográficos

ID19508596
AutoresLesley Lowes (0009-0003-0214-0939, Senior Lecturer/Practitioner (paediatric diabetes), Nursing, Health and Social Care Research Centre, School of Nursing and Midwifery Studies, Cardiff University, Cardiff, UK), Michael Robling (0000-0002-1004-036X, Cardiff University), Michael R Robling (Senior Lecturer/Associate Director, South East Wales Trials Unit, Primary Care and Public Health, Cardiff University, Cardiff, UK), Kristina Bennert (Research Associate, NIHR School for Primary Care Research, Academic Unit of Primary Care, University of Bristol, Bristol, UK), Charlotte Crawley (Parent of a teenager with diabetes/Lay Representative, c/o South East Wales Trials Unit, Primary Care and Public Health, Cardiff University, Cardiff, UK), Helen Hambly (0000-0002-9887-4245, Research Associate, Speech and Language Therapy Research Unit, North Bristol NHS Trust, Bristol, UK), Kamila Hawthorne (Cardiff University), John W Gregory (0000-0001-5189-3812, Cardiff University), and the DEPICTED Study Team
Ano2011
Volume14
Fascículo3
Páginas250-260
Data de publicação2011-09-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoHealth Expectations (JOURNAL)
Identificadores do periódicoISSN: 1369-6513 • E-ISSN: 1369-7625
EditoraWiley (PUBLISHER • GB)
DOI10.1111/j.1369-7625.2010.00625.x
PMID20860779
PMCIDPMC3638343
OpenAlexW2124658392
IdiomaEN
Citações recebidas11
Referências citadas19

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

Action research · Empowerment · Medical education · Pedagogy · Political science · Public relations · Research design · Sociology · Stakeholder · Stakeholder engagement · Health Policy Implementation Science · Interprofessional Education and Collaboration · Medicine · Mental Health and Patient Involvement · Nursing · Psychology