Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: May 25, 2023
Date Accepted: Nov 28, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
“There's lots of living in between:” uncovering structures influencing the care experiences of Chinese Canadian prostate cancer survivors to cultivate cultural safety and relationality in digital health
ABSTRACT
Background:
Prostate cancer (PCa) is the most commonly diagnosed non-skin cancer for Canadian males, straining systems to provide care. Virtual care can be one way to relieve this strain, but survivors’ care needs and technology use are influenced by intersecting social and cultural structures. Cultural adaptation has been posited as an effective method to tailor existing interventions to better serve racialized communities, including Chinese men. However, cultural adaptations may inadvertently draw attention away from addressing structural inequities.
Objective:
This study used qualitative methods to (1) explore the perceptions and experiences of Chinese Canadian PCa survivors with follow-up and virtual care, and (2) identify implications for the cultural adaptation of a PCa follow-up care application: the Ned Clinic.
Methods:
A community-based participatory approach was used, informed by cultural safety and user-centred design principles, to invite Chinese Canadian PCa survivors and their caregivers to share their stories. Data were inductively analysed to explore their unmet needs, common experiences, and levels of digital literacy.
Results:
Unmet needs and technology preferences were similar to broader trends within the wider survivor community. However, participants indicated that they felt uncomfortable, unable to, or ignored when expressing their needs. Systemic changes were identified as likely being more effective in improving care delivery and wellbeing, than the cultural adaptation of Ned.
Conclusions:
Designing “trickle-up” adaptations that address structural inequities and emphasize accessibility, relationality, and privacy may be more effective and efficient at improving care than creating cultural adaptations of interventions.
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Copyright
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