Better together: Evolution of patient stakeholder engagement in healthy lifestyle research after acquired brain injury
Publications
Model System:
TBI
Reference Type:
Journal article
Accession No.:
J88446
Journal:
Journal of Participatory Research Methods
Year, Volume, Issue, Page(s):
, , ,
Publication Website:
Abstract:
Article describes the process of engaging and partnering with patient stakeholders in a six-year study to modify an evidence-based healthy lifestyle program for individuals with acquired brain injury (ABI), including traumatic brain injury (TBI) and cerebrovascular accident/stroke (CVA). The Diabetes Prevention Program Group Lifestyle Balance (DPP-GLB) adaptation process involved three phases: (1) engaging stakeholders to identify appropriate adaptations to the DPP-GLB; (2) making the relevant modifications to create the GLB-CVA and GLB-TBI; and (3) obtaining approval from the stakeholders to ensure that the modifications accurately reflected their recommendations. The authors describe how patient stakeholders were regularly engaged and encouraged to offer feedback to support study activities, including curriculum modification, research design, knowledge translation, and future research opportunities, to create a meaningful and patient-centered program for people with ABI. Commentary from two patient stakeholders who have been part of the modification, implementation, and dissemination of both programs is also included. Additionally, the importance of including patient stakeholders in all stages of research and future directions of the modified programs are discussed from the perspective of the research team.