A Community‐Led Approach to Enhancing Informed Consent for Individuals With Vision Impairment

ABSTRACT Participant Information and Consent Forms (PICFs) are critical documents that help promote informed decision‐making about research participation. However, many PICFs remain inaccessible to people with diverse needs, including those experiencing print disability. Providing information in multiple accessible formats can enhance inclusivity and support equitable access to research opportunities. The “Meeting Access and Inclusion Needs” (MAIN) project was a four‐part, community‐engaged, formative study employing qualitative research methods. Part 1 involved focus groups with eight disability advocacy organizations ( n = 21 individuals) to identify accessibility requirements. Part 2 comprised a co‐design workshop series ( n = 11 participants with lived experience) to develop accessible PICF templates. Part 3 included individual user experience sessions ( n = 6 participants) employing the think‐aloud methodology and the Theoretical Framework of Acceptability questionnaire. Part 4 involved an independent accessibility audit by Vision Australia against digital accessibility standards. The MAIN Project resulted in three co‐designed PICF formats (print, audio, and video). The co‐design team emphasized that two to three format options were essential, with one participant noting: “Everyone's need is unique, and accessibility is about more options for more people.” The accessibility audit confirmed all templates met standards with minor modifications (e.g., metadata additions, caption pixelation resolution, text color adjustment). All templates conformed with accessibility standards and best practice guidelines following final revisions. Community‐engaged co‐design successfully produced formative, accessible, multi‐format PICF templates meeting accessibility standards. Offering two to three information formats enhances accessibility and supports inclusive research participation. These templates and accompanying guidelines provide researchers with practical resources to tailor informed consent processes to diverse needs, particularly for people with vision impacts. Further research should focus on large‐scale implementation and evaluation across research settings and populations.

Authors

Institutions

Publication Details

Journal
Diversity & Inclusion Research
Published
2026-04-22
DOI
https://doi.org/10.1002/dvr2.70058
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

A Community‐Led Approach to Enhancing Informed Consent for Individuals With Vision Impairment

Fleur O’Hare, Tessa Saunders, Camille Paynter, Lauren N. Ayton et al.
Diversity & Inclusion Research
Mental Health and Patient Involvement
article

A Community‐Led Approach to Enhancing Informed Consent for Individuals With Vision Impairment

Fleur O’Hare, Tessa Saunders, Camille Paynter, Lauren N. Ayton, Gudrun Wells, Lisa Eckstein, Michael Burmeister, David Foran, Kevin Lee, John Paul Cruz, Daniel Talko, Grace King, Debra Simons, Shane Somerville
article en

Abstract

ABSTRACT Participant Information and Consent Forms (PICFs) are critical documents that help promote informed decision‐making about research participation. However, many PICFs remain inaccessible to people with diverse needs, including those experiencing print disability. Providing information in multiple accessible formats can enhance inclusivity and support equitable access to research opportunities. The “Meeting Access and Inclusion Needs” (MAIN) project was a four‐part, community‐engaged, formative study employing qualitative research methods. Part 1 involved focus groups with eight disability advocacy organizations ( n = 21 individuals) to identify accessibility requirements. Part 2 comprised a co‐design workshop series ( n = 11 participants with lived experience) to develop accessible PICF templates. Part 3 included individual user experience sessions ( n = 6 participants) employing the think‐aloud methodology and the Theoretical Framework of Acceptability questionnaire. Part 4 involved an independent accessibility audit by Vision Australia against digital accessibility standards. The MAIN Project resulted in three co‐designed PICF formats (print, audio, and video). The co‐design team emphasized that two to three format options were essential, with one participant noting: “Everyone's need is unique, and accessibility is about more options for more people.” The accessibility audit confirmed all templates met standards with minor modifications (e.g., metadata additions, caption pixelation resolution, text color adjustment). All templates conformed with accessibility standards and best practice guidelines following final revisions. Community‐engaged co‐design successfully produced formative, accessible, multi‐format PICF templates meeting accessibility standards. Offering two to three information formats enhances accessibility and supports inclusive research participation. These templates and accompanying guidelines provide researchers with practical resources to tailor informed consent processes to diverse needs, particularly for people with vision impacts. Further research should focus on large‐scale implementation and evaluation across research settings and populations.

Diversity & Inclusion ResearchVol. 3(3)
The University of Melbourne (AU), UCL Australia (AU), Australian College of Optometry (AU), Noosa Hospital (AU), Living with Disability (GB), Centre for Eye Research Australia (AU), Expert System (Italy) (IT), Melbourne Clinic (AU), Melbourne Health (AU)
Reduced inequalities
Openalex Percentile: Top 12%
Mental Health and Patient Involvement
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.