From many voices, one question: Community co-design of a population-based qualitative cancer research study

Article


Ayre, Susannah K., Johnston, Elizabeth A., BourdaniotisI, Xanthia E., Zajdlewicz, Leah, Beesley, Vanessa L., Pole, Jason D., Hansen, Aaron, Gasper, Harry, Cossio, Danica, Lock, Gemma and Goodwin, Belinda C.. 2024. "From many voices, one question: Community co-design of a population-based qualitative cancer research study." PLoS One. 19 (8). https://doi.org/10.1371/journal.pone.0309361
Article Title

From many voices, one question: Community co-design of a population-based qualitative cancer research study

ERA Journal ID39745
Article CategoryArticle
AuthorsAyre, Susannah K., Johnston, Elizabeth A., BourdaniotisI, Xanthia E., Zajdlewicz, Leah, Beesley, Vanessa L., Pole, Jason D., Hansen, Aaron, Gasper, Harry, Cossio, Danica, Lock, Gemma and Goodwin, Belinda C.
Journal TitlePLoS One
Journal Citation19 (8)
Article Numbere0309361
Number of Pages22
Year2024
PublisherPublic Library of Science (PLoS)
Place of PublicationUnited States
ISSN1932-6203
Digital Object Identifier (DOI)https://doi.org/10.1371/journal.pone.0309361
Web Address (URL)https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0309361
Abstract

Purpose
This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research.

Methods
Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews. During workshops, participants generated and refined ideas for an open-ended survey question and provided feedback on a study invitation letter. The use of a single, open-ended question aims to minimise participant burden while collecting rich information about needs and experiences. The research team then shortlisted the question ideas and revised study invitation materials based on workshop feedback. Next, using interviews, community members were asked to respond to a shortlisted question to test its interpretability and relevance and to review revised invitation materials. Content analysis of participant feedback was used to identify principles for designing study materials.

Results
Principles for designing qualitative survey questions were identified from participant feedback, including define the question timeframe and scope; provide reassurance that responses are valid and valued; and use simple wording. Principles for designing study invitation materials were also identified, including communicate empathy and sensitivity; facilitate reciprocal benefit; and include a ‘human element’. The qualitative survey question and study invitation materials created using these principles were considered relevant and acceptable for use in a population-based survey.

Conclusions
Through community consultation and co-design, this study identified principles for designing qualitative data collection and invitation materials for use in cancer survivorship research. These principles can be applied by other researchers to develop study materials that are sensitive to the needs and preferences of community members.

Keywordscancer
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 20204206. Public health
Byline AffiliationsCancer Council Queensland, Australia
Queensland University of Technology
QIMR Berghofer Medical Research Institute, Australia
University of Queensland
University of Toronto, Canada
Icon Cancer Centre, Australia
Princess Alexandra Hospital, Australia
Toowoomba Hospital, Australia
Cancer Alliance Queensland, Australia
Centre for Health Research
University of Melbourne
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Goodwin, Belinda C., Browne, Matthew, Hing, Nerilee and Russell, Alex M. T.. 2017. "Applying a revised two-factor model of impulsivity to predict health behaviour and well-being." Personality and Individual Differences. 111, pp. 250-255. https://doi.org/10.1016/j.paid.2017.02.029
Defining young in the context of prostate cancer
Chambers, Suzanne K., Lowe, Anthony, Hyde, Melissa K., Zajdlewicz, Leah, Gardiner, Robert A., Sandoe, David and Dunn, Jeff. 2015. "Defining young in the context of prostate cancer." American Journal of Men's Health. 9 (2), pp. 103-114. https://doi.org/10.1177/1557988314529991
Medical help-seeking for sexual concerns in prostate cancer survivors
Hyde, Melissa K., Zajdlewicz, Leah, Wootten, Addie C., Nelson, Christian J., Lowe, Anthony, Dunn, Jeff and Chambers, Suzanne K.. 2016. "Medical help-seeking for sexual concerns in prostate cancer survivors." Sexual Medicine. 4 (1), pp. e7-e17. https://doi.org/10.1016/j.esxm.2015.12.004
Measuring masculinity in the context of chronic disease
Chambers, Suzanne K., Hyde, Melissa K., Oliffe, John L., Zajdlewicz, Leah, Lowe, Anthony, Wootten, Addie C. and Dunn, Jeff. 2016. "Measuring masculinity in the context of chronic disease." Psychology of Men and Masculinity. 17 (3), pp. 228-242. https://doi.org/10.1037/men0000018
Connected and isolated victims of relational aggression: associations with peer group status and differences between girls and boys
Zimmer-Gembeck, Melanie J., Pronk, Rhiarne E., Goodwin, Belinda, Mastro, Shawna and Crick, Nicki R.. 2013. "Connected and isolated victims of relational aggression: associations with peer group status and differences between girls and boys." Sex Roles: a journal of research. 68 (5-6), pp. 363-377. https://doi.org/10.1007/s11199-012-0239-y
Comparing reports of peer rejection: associations with rejection sensitivity, victimization, aggression, and friendship
Zimmer-Gembeck, Melanie J., Nesdale, Drew, McGregor, Leanne, Mastro, Shawna, Goodwin, Belinda and Downey, Geraldine. 2013. "Comparing reports of peer rejection: associations with rejection sensitivity, victimization, aggression, and friendship." Journal of Adolescence. 36 (6), pp. 1237-1246. https://doi.org/10.1016/j.adolescence.2013.10.002
Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study
Thorne, Hannah Briony, Goodwin, Belinda, Langham, Erika, Rockloff, Matthew and Rose, Judy. 2016. "Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study." Journal of Gambling Issues. https://doi.org/10.4309/jgi.2016.34.12
Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample
Browne, Matthew, Pennycook, Gordan, Goodwin, Belinda and McHenry, Melinda. 2014. "Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample." European Journal of Social Psychology. 44 (7), pp. 736-742. https://doi.org/10.1002/ejsp.2059
EGM jackpots and player behaviour: an in-venue shadowing study
Browne, Matthew, Langham, Erika, Rockloff, Matthew J., Li, En, Donaldson, Phillip and Goodwin, Belinda. 2015. "EGM jackpots and player behaviour: an in-venue shadowing study." Journal of Gambling Studies. 31 (4), pp. 1695-1714. https://doi.org/10.1007/s10899-014-9485-y
Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Loxton, Natalie J.. 2016. "Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal." Personality and Individual Differences. 94, pp. 206-210. https://doi.org/10.1016/j.paid.2016.01.030
Differential effects of reward drive and rash impulsivity on the consumption of a range of hedonic stimuli
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Loxton, Natalie. 2016. "Differential effects of reward drive and rash impulsivity on the consumption of a range of hedonic stimuli ." Journal of Behavioral Addictions. 5 (2), pp. 192-203. https://doi.org/10.1556/2006.5.2016.047
Do gamblers eat more salt? Testing a latent trait model of covariance in consumption
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Donaldson, Phillip. 2015. "Do gamblers eat more salt? Testing a latent trait model of covariance in consumption." Journal of Behavioural Addictions. 4 (3), pp. 170-180. https://doi.org/10.1556/2006.4.2015.022
Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale
Goodwin, B. C., Browne, M. and Rockloff, M.. 2015. "Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale." Evolutionary Psychology. 13 (4). https://doi.org/10.1177/1474704915613914