Results and discussion

This is a novel example of health literacy stakeholder engagement in Ireland. Critically, it provides a tangible example of the process and outcomes of a collaboration between stakeholders, researchers and the Sláintecare Healthy Communities Programme. The findings of this study highlight the importance of working in partnership with communities in developing shared solutions. Globally, there are a growing number of tangible examples that detail different approaches to meaningfully engage with community members [18]. Within the current study, the adapted DDDA enabled community members from different backgrounds to share, discuss and debate a common goal; improving health literacy. Critically, the process was developed mindful of the power dynamics between different community members and the research team and aimed to recognise the expertise and lived experience of all. Some examples of this included skill recognition, feedback opportunities, and shared decision making throughout the workshop(s).

Within this study, following final voting by stakeholders on the presented group solutions at phase three, a number recommendations were generated for each co-design workshop. These co-design recommendations are presented here as they were presented during the workshop sessions, with some additional information presented in brackets for comprehensiveness. Audio-recordings were not transcribed due to poor sound quality, but participant notes, feedback, and facilitator notes and reflections were used to provide this additional information where needed. Because poor acoustic quality limited full verbatim audio transcription, a transparent, multi-source framework was engineered to ensure rigorous qualitative analysis and traceability. Raw data consisted of participant-written flip charts, post-it notes, individual feedback forms, and facilitator summary logs completed immediately post-workshop. Three members of the research team (MM, HG, SM) conducted a collaborative qualitative content analysis. Items were organised electronically, systematically cross-referenced against table notes, and categorised chronologically matching the workshop phases. Member-checking was executed at the end of Phase Three by verbally presenting synthesised recommendations back to tables for validation before voting. Discordant interpretations between researchers were resolved via collaborative consensus reviews, maintaining a clear trail from raw artifact to final recommendation. The final recommendations from each workshop have been displayed in a table format in order of participant preference voting. It should be noted that where similar recommendations were made by different groups within each area, these recommendations were synthesised after the workshop by the research team, and votes for these ideas were collated. To demonstrate transparency regarding participant prioritisation, the finalised co-designed recommendations are presented below in order of voting preference, with explicit percentage proportions of the total votes cast included. Table 2 illustrates the Finglas and Cabra Sláintecare area recommendations and added descriptions. Table 3 illustrates the Mayo Sláintecare area recommendations and added descriptions. A defining conceptual insight from these co-design workshops is that when disadvantaged or underserved communities are tasked with generating solutions for health literacy, they intuitively build strategies targeting structural determinants of health and system responsiveness, rather than individual cognitive capabilities. Stakeholders explicitly argued that an individual's health literacy is context-dependent, directly related to the complexity of the environment they are forced to navigate. For example, if clinical staff turnover is unsustainably high, or geographic distances to clinics are insurmountable due to non-existent public transport, traditional educational interventions were obsolete. Therefore, expanding basic access, stabilising local medical staffing, and smoothing institutional communication pathways are not external to health literacy, they are the fundamental pre-requisites of a health-literate system.

Recommendation | Percentage of total votes | Additional description provided by groups
Community Engagement | 35% | Health related community eventsCommunity kitchen/ garden/ supermarket/ health eating/ cooking/ growing are of specific interestSchools' engagement- signposting to social and mental health benefitsPeer to peer learning
Infrastructure (long term) | 18% | Funding supports- critical to help people get fundingPrimary care accessSchools and early interventions need to be long term
Early Intervention | 13% | Such as a paid school post to cover all aspects of health literacy e.g. Physical Education, mental health, hygiene etc.Social maintenance scheme- using existing and new local clubs/ health centres/ community groups
Resource Development (both digital and physical) | 11% | Easy to understandTailored to different populations
Community Hub | 10% | Classes to train locals to deliver training (community champions)

Recommendation | Percentage of total votes | Additional description provided by groups
Community Outreach Officer | 22% | [Who should lead this] Local authorities? HSE?[Should be a…] Salaried position
Funding Networks | 19% | Coordinating the disconnect (of funding schemes)Central person (known in the community) to help with fundingPrioritise sustainable grant schemes
Preventative – access where people are at | 18% | Mobile primary care unit– focusing on women's health, people's general health/ population healthHealth check evenings that are sustainable, linked back to the mobile unit etc.Can be advertised using Mid-West radio to share information
Local Healthcare Professionals | 15% | Community healthcare nurses needed locallyPromote use of district hospitals more (take pressure of GPs and district nurses)Stepdown beds neededDevelop primary healthcare centres appropriatelyPromote appropriate use of pharmacies (take pressure off GPs)
Community Activities | 9% | Social and physical health should both be consideredIntergenerational approachesCommunication is key consideration

Notably, there were similarities and differences in the proposed recommendations across each community setting, with these spanning across what would be considered functional, interactive and critical health literacy [19], and advocating for individual to policy level change [3]. As suggested by Sørenson et al. [3] investing in health literacy system capacity can lead to a more sustainable and scalable effort, moving beyond solely depending on changing organizational or individual behaviour. This reflects a shift in wider health literacy research and practice [2], [3], [20]. Within both areas, it was established that any initiatives to improve health literacy would require engagement with community members and should take advantage and align with existing established programmes. Specific local initiatives that implicitly and indirectly linked to health literacy were highlighted throughout the workshops. This included, for example, adult literacy programmes and physical activity promotion clubs (where the activity was deemed far less relevant than the who and how this club was facilitated). It is widely recognised that effective health literacy programmes empower communities, particularly in underserved or vulnerable areas, by equipping individuals with the knowledge and skills needed to improve their health and wellbeing [6], [9]. Despite this, within the workshops, advertising, timing, transport, and sustainability of such programmes were mentioned as potential barriers to their long-term effectiveness. As has been acknowledged in previous European wide research, at a policy level, there is a need to support and expand existing community health literacy initiatives [5]. This will require increased investment in community-based initiatives, particularly in the communities of greatest need. Evaluation/monitoring is a crucial requirement to sustain and scale up these existing initiatives. Recent work by Chu and colleagues [20] identified and synthesised several organizational health literacy responsiveness assessment tools that could be used to support this. However, many of the tools were developed for healthcare settings, and required support from a researcher to be administered. Methods for assessing individual health literacy have also been reviewed [21], [22], but recommendations from the WHO include the suggestion to develop locally relevant strategies for surveillance, evaluation and impact assessment [6]. In Ireland, advancements have been made to co-design an assessment of health literacy for adolescents [23], but there is a need to consider assessment of health literacy in other age groups, and in other population groups of specific need. As was highlighted in this study, health literacy is context specific, making the development of valid, reliable and feasible tools a challenge.

In Finglas and Cabra, there was also an emphasis on recommendations that supported health education and early intervention spanning across school and community settings. This reiterates the importance of health literacy as a preventative approach to health promotion. Despite a shift within the academic literature to viewing health literacy from a more ‘top-down’, systems approach, within Finglas and Cabra in particular, individuals in the community still called for the need for early intervention, focussing on individual capacities and responsibilities. Aligning with the WHO action area aiming to ‘Incorporate health literacy-responsive practice into health education curricula and continuing professional development’ (p.g.37), early intervention with young people could be achieved by integrating health literacy within existing curricula [6]. The suggestions of schools as an environment to sustainably and proactively support health literacy development was explicitly mentioned, and voted for, by stakeholders in Finglas and Cabra. In Ireland, there is a clear opportunity to integrate health literacy norms, values and practices under the recently introduced ‘Wellbeing’ programme [24]. Health literacy development in young people, and specifically within schools has received increasing attention internationally [25], [26], [27], [28], [29], [30] and in Ireland specifically [31] in recent years, although there are challenges to this. In later life stages, by promoting preventive care and improving the management of ongoing health conditions, higher health literacy can decrease the reliance on emergency care services and reduce overall healthcare costs [3]. Exploring the data from Ireland collected as part of the 2011 European Health Literacy Survey, improving health literacy was suggested to have the greatest impact in those from lower social status groups, such as the identified Sláintecare Healthy Communities across Ireland, and subsequently reduce the current social gradient in the prevalence of long-term chronic health conditions, smoking, and hospital service utilisation [9]. Although this analysis was fairly recent, this is based on 2011 data and may not take into account more recent efforts to improve health literacy, or more recent events that may have exasperated health inequalities (e.g COVID-19, the cost-of-living crisis, housing conditions etc.). As a result, health literacy could be viewed as a piece of the puzzle, but it is not the only piece, and wider improvements to health care services are desperately needed.

In respect to the rural location of Mayo, improvements to healthcare access was recommended to support health literacy, with proposed solutions reflective and contextualised to a rural population. Indeed, in both communities, poor health infrastructure was a consistent topic of discussion. Individuals highlighted a clear lack of accessibility to, and availability of, a variety of health care services. This included the need for increased availability of medical appointments; an increased number of healthcare providers servicing the local community; the provision of more realistic appointment times to allow for travel; and a decrease in turnover of staff in medical settings which individuals felt resulted in ‘disjointed’ care. Improving health literacy across Ireland and beyond is not merely a healthcare concern, but a social imperative that can lead to better health outcomes, more effective utilisation of the healthcare service, and a healthier nation overall. While this is a broad and ambitious aim, health literacy is a broad concept that encompasses a wide variety of capacities that can support this endeavour [32]. To work towards achieving this aim however, building health literacy responsive health systems that understand and reflect community needs and distinct characteristics is crucial (WHO, 2022).

A further suggestion from those involved in the workshops across both areas was a call for regular community events, that are widely advertised, which would provide individuals with an opportunity to easily engage in a wide range of health related educational and social activities in a non-clinical setting. Within Mayo in particular, this was recognised as an opportunity to also reduce social isolation. Previous research has cited social support as a key practice in contributing to the health literacy of older adults as well as their communities [33]. De Wit et al. [33] categorised this social support as; emotional (e.g. sharing experiences), instrumental (e.g. tangible aid), informational (e.g. advice and information), and appraisal (e.g. information for self-evaluation). In the current study, the hope was that these health related community events could empower community members to manage and navigate their specific health needs. Previous research has found social support to improve health literacy [34], [35], so this may be a particularly relevant initiative to pursue in these communities, extending and exemplifying the shared community spirit evident in both workshops. These events were also seen as a potential way of sharing resources and training for and with the local community health ‘champions’, who many participants spoke so highly of as advocates for health literacy within their communities. The importance of these ‘champions’ was so well recognised that in Mayo, participants suggested there should be a paid, dedicated, roles (such as community outreach officers), with a responsibility for health literacy.

Ultimately, to translate these participatory co-design insights into actionable public health practice, there are several explicit structural interventions for policy makers and health service administrators to consider. At a policy level, the integration of health literacy within the national curriculum, and reforming funding architecture, (e.g. from hyper-competitive, short-term funding cycles towards rolling multi-year core operational grants) are two key suggestions. At a community level, continued funding for local outreach officers as dedicated, non-clinical system navigators, is warranted. Furthermore, in rural catchments characterised by severe public transport deficits, wide-spread and sustained funding and deployment of mobile primary healthcare clinics to carry out routine non-emergency care, localised screening, and clear signposting directly within remote towns would be of huge benefit. Many of the suggestions from this participatory work could be linked to the WHO Health Literacy recommended action areas [36], further strengthening the need to integrate, implement, and evaluate these strategies in practice to improve health literacy outcomes.

Strengths and limitations of the study

This study, to the authors' knowledge, is the first to deploy a co-development methodology with multiple stakeholders invested in developing health literacy in Ireland. This was a flexible, reflective, and engaging process which could be adapted to a wide variety of topics. As project methods for data collection strove to be equitable and target hardly reached (as opposed to ‘hard to reach’) community members, challenges were observed in recruitment during a timebound study. Sampling of community members from both areas was established through networks of relationships with Sláintecare Healthy Communities. While these methods supported the time restrictions in completing the project, inevitably there are community members we will have not engaged with in this process. In particular, in the development of the co-design workshops limitations around lead in time and equity of access to materials, resources and a central workshop location were observed due to the geographical descriptors of each Sláintecare area. Further examples of potential barriers were the registration process of the workshops, and the informed consent process required by the research institute. In addition, due to the timeframe it was not possible to complete a typical, full DDDA [14], [15]. Meaning that the full list of recommendations were not presented back to participants after attending the workshops or in the timeframe of this pilot project, although collaboration with the communities is ongoing. These findings should not be accepted as a comprehensive, nor final, list of recommendations (but are not intended as such). Community engagement in the implementation, evaluation, and ongoing development of these recommended health literacy responsive actions should be an iterative collaborative process.

Recommendations for future research

In line with recent calls from other researchers [37] findings in this study support the need for future longitudinal health literacy research to establish causal relationships and explore diverse geographical, socioeconomic, cultural and health system contexts. In practical terms, existing and new health literacy research and initiatives require sustainable, long-term funding to enable this. Such research will be crucial to understand how health literacy interacts as a pathway, mechanism, mediator for health outcomes in different communities. Furthermore, methodologically, future research could look to replicate this approach in different contexts to 1) develop this experience-based co-design process and 2) identify community specific, and potentially nationally and internationally, consistent and diverse recommendations for health literacy responsive actions.