Patient and Family Advisory Councils for Research: Recruiting and Supporting Members From Diverse and Hard-to-Reach Communities.


Journal

The Journal of nursing administration
ISSN: 1539-0721
Titre abrégé: J Nurs Adm
Pays: United States
ID NLM: 1263116

Informations de publication

Date de publication:
Oct 2019
Historique:
pubmed: 7 9 2019
medline: 24 9 2019
entrez: 7 9 2019
Statut: ppublish

Résumé

To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs). Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem. A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers. Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership. Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

Sections du résumé

OBJECTIVE OBJECTIVE
To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs).
BACKGROUND BACKGROUND
Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem.
METHODS METHODS
A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers.
RESULTS RESULTS
Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership.
CONCLUSION CONCLUSIONS
Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

Identifiants

pubmed: 31490796
doi: 10.1097/NNA.0000000000000790
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

473-479

Auteurs

James D Harrison (JD)

Author Affiliations: Assistant Professors (Drs Harrison and Duong), Associate Professor (Dr Anderson), Professor (Dr Auerbach), and Project Manager (Ms Chen), Division of Hospital Medicine, University of California San Francisco; Chief Experience Officer (Dr Fagan) and Director of Patient and Family Advisory Councils (Ms Hanson), University of Miami Health System, Florida; Chief Transformation Officer and Vice President (Dr Robinson), Christiana Care Health System, Wilmington, Delaware; Associate Professor (Dr Schnipper), Department of Medicine, Brigham & Women's Hospital, Boston, Massachusetts; Patient and Family Advisory Council Members (Ms Symczak and Mr Banta), Intensive Care Unit Patient & Family Advisory Council, University of California San Francisco; and Senior Patient Advisor (Ms Carnie) and Project Manager (Ms Wong), Center for Patients and Families, Brigham & Women's Hospital, Boston, Massachusetts.

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