Codesign and implementation of an equity-promoting national health literacy programme for people living with inflammatory bowel disease (IBD): a protocol for the application of the Optimising Health Literacy and Access (Ophelia) process

Abstract

IntroductionNon-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn’s & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers.Methods and analysisHealth literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people’s experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021–2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes.Ethics and disseminationEthics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968–4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968–4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.

Application of the optimizing health literacy and access (Ophelia) process in partnership with a refugee community in Australia: Study protocol

“…Importantly, Ophelia provides an authentic process for engagement and co-design with diverse stakeholders. The Ophelia process has been successfully adapted to fit many projects in different countries around the world ( 32 ) and previous Ophelia protocols for studies in different contexts have been published ( 29 , 69 , 70 ) including a study about refugees in Portugal ( 2 ). This study will be conducted in accordance with the eight principles of the Ophelia process ( Table 2 ) which may mean that during the co-design phases of the project, some protocol changes may be necessary to suit the cultural and linguistic needs of the community, available resources, and other contextual circumstances.…”

Using Co-Design to Develop a Health Literacy Intervention with Socially Disadvantaged Adolescents

“…synthesized findings through reflexive discussion into common concepts [44,45]. The use of multiple researchers throughout this reflexive process is common in other projects adopting the Ophelia framework [46][47][48][49]. In line with the Ophelia framework [38,39] and the aims of the study, analysis of the insight is focused on the development of useful knowledge.…”

Linguistic adaptation and psychometric properties of the health literacy questionnaire in serbian language among people with chronic diseases

“…Also, interventions could be tailored according to specific needs of populations to increase health literacy. 15 For this reason, translations to world languages are needed to obtain additional tools to assess and improve health literacy in various communities. Additionally, examination of psychometric properties of the HLQ in less widely spoken languages could help to identify whether the original questionnaire needs to be adapted to suit the local populations.…”