The co-development of a linguistic and culturally tailored tele-retinopathy screening intervention for immigrants living with diabetes from China and African-Caribbean countries in Ottawa, Canada

Abstract

Background Diabetic retinopathy is a sight-threatening ocular complication of diabetes. Screening is an effective way to reduce severe complications, but screening attendance rates are often low, particularly for newcomers and immigrants to Canada and people from cultural and linguistic minority groups. Building on previous work, in partnership with patient and health system stakeholders, we co-developed a linguistically and culturally tailored tele-retinopathy screening intervention for people living with diabetes who recently immigrated to Canada from either China or African-Caribbean countries. Methods Following an environmental scan of diabetes eye care pathways in Ottawa, we conducted co-development workshops using a nominal group technique to create and prioritize personas of individuals requiring screening and identify barriers to screening that each persona may face. Next, we used the Theoretical Domains Framework to categorize the barriers/enablers and then mapped these categories to potential evidence-informed behaviour change techniques. Finally with these techniques in mind, participants prioritized strategies and channels of delivery, developed intervention content, and clarified actions required by different actors to overcome anticipated intervention delivery barriers. Results We carried out iterative co-development workshops with Mandarin and French-speaking individuals living with diabetes (i.e., patients in the community) who immigrated to Canada from China and African-Caribbean countries (n = 13), patient partners (n = 7), and health system partners (n = 6) recruited from community health centres in Ottawa. Patients in the community co-development workshops were conducted in Mandarin or French. Together, we prioritized five barriers to attending diabetic retinopathy screening: language (TDF Domains: skills, social influences), retinopathy familiarity (knowledge, beliefs about consequences), physician barriers regarding communication for screening (social influences), lack of publicity about screening (knowledge, environmental context and resources), and fitting screening around other activities (environmental context and resources). The resulting intervention included the following behaviour change techniques to address prioritized local barriers: information about health consequence, providing instructions on how to attend screening, prompts/cues, adding objects to the environment, social support, and restructuring the social environment. Operationalized delivery channels incorporated language support, pre-booking screening and sending reminders, social support via social media and community champions, and providing using flyers and videos as delivery channels. Conclusion Working with intervention users and stakeholders, we co-developed a culturally and linguistically relevant tele-retinopathy intervention to address barriers to attending diabetic retinopathy screening and increase uptake among two under-served groups.

A data extraction template for the behaviour change intervention ontology

“…BCIO annotations were identified in 14 papers; their details are shown in Table 1, with all 14 papers using the Mode of Delivery Ontology ( Encantado et al , 2022 ; Giroux et al , 2021 ; Jackson et al , 2022 ; Keller et al , 2023 ; Kenny et al , 2021 ; Lucci et al , 2022 ; McClatchey et al , 2024 ; McMahon et al , 2023 ; Osborne & Norris, 2022 ; Shwed et al , 2023 ; Silva et al , 2022 ; St Quinton et al , 2022 ; Umaefulam et al , 2023 ; Wuerstl et al , 2023 ), six papers using the Intervention Setting Ontology ( Jackson et al , 2022 ; McMahon et al , 2023 ; Osborne & Norris, 2022 ; Silva et al , 2022 ; Umaefulam et al , 2023 ; Wuerstl et al , 2023 ; and four papers using the Intervention Source Ontology ( Jackson et al , 2022 ; Osborne & Norris, 2022 ; Silva et al , 2022 ; Wuerstl et al , 2023 ). No papers were identified using the Mechanisms of Action, BCT and Style of Delivery ontologies.…”

Generating user-driven patient personas to support preventive health care activities of rural-living unattached patients

“…A lack of end user involvement in persona development and narrative structuring is an identified limitation in previous studies [ 27 , 28 ]. While co-design personas have been previously used, no description of the persona development process was provided [ 29 ], limiting the replicability of their approach. This further highlights critiques of persona methodologies as lacking verifiability [ 17 , 18 ].…”

Assessing the feasibility, acceptability, and fidelity of a tele-retinopathy-based intervention to encourage greater attendance to diabetic retinopathy screening in immigrants living with diabetes from China and African-Caribbean countries in Ottawa, Canada: a protocol

“…We will identify community health centers and family physicians in Ottawa that provide services to immigrants from China and African-Caribbean countries and inform them of the screening intervention. Based on our co-development work with health system and patient partners in the intervention development phase [ 29 ], potential patients will also be informed of the tele-retinopathy screening via promotion at walk-in clinics, community centers, places of worship, retail locations, and social settings often used by the two population groups. To address barriers around language, knowledge, and promotion about the screening attendance itself, we will use flyers, information sheets, posters, and videos (available in English, Mandarin, and French), which contain information about diabetic retinopathy, its importance, and instructions on how to access the screening intervention.…”

“…Accordingly, in collaboration with health system and patient partners, we co-developed a culturally and linguistically tailored tele-retinopathy screening intervention with immigrants from China and African-Caribbean countries in Ottawa, Canada, enhanced to address barriers to screening attendance. The behavior change, theory-based intervention was co-developed over a period of 1 year by research partners, which included patient partners, health system partners, clinicians, and researchers via iterative co-design workshops [ 29 ]. The intervention was designed to target five prioritized barriers to attending retinopathy screening (language, knowledge of retinopathy, physician barriers regarding communication and support for screening, promotion about diabetic retinopathy screening, and fitting screening around other activities).…”

“…The intervention includes operationalized strategies and delivery channels that incorporate providing language support, pre-booking screening and sending reminders, social support via social media (i.e., WeChat and community champions), and providing resources such as posters, flyers, information sheets, and videos. Further details about the intervention content itself and its co-development are described elsewhere [ 29 ].…”