Codesigning health literacy solutions with pregnant women and mothers in Tasmania to reduce the intergenerational impact of non-communicable diseases

Non-communicable diseases (NCDs) are the leading cause of death and disability worldwide. The majority of NCDs can be prevented by addressing common modifiable behavioural risk factors. The World Health Organisation is prioritising health literacy development to empower individuals and communities to address NCD risk factors and reduce the growing burden of NCDs globally. Growing evidence suggests that maternal health is strongly linked with NCDs and associated risk factors. Pregnancy and postpartum period provide a crucial opportunity to improve the health of women and address NCD risk in women and their children. Empowering pregnant women and mothers with the asset of health literacy may help to reduce the intergenerational impact of NCDs. However, little is known about the health literacy of pregnant women and mothers globally. This thesis begins with a scoping review of the international literature to identify health literacy interventions that focused on improving NCD-related health outcomes or health behaviours of pregnant women and/or mothers with young children. The review confirmed the need for more research and awareness about the importance of addressing the health literacy of pregnant women and mothers. Further, health literacy interventions to improve health outcomes during and after pregnancy are infrequent. Moreover, existing interventions inadequately consider health literacy needs of the target population during intervention development. Consequently, the existing interventions were assessed to be underutilised and unsustainable in engaging women in healthy lifestyle practices. Tasmania is an island state in Australia that experiences a significant burden of NCDs and greater socioeconomic disadvantage than Australia overall. In recognition of the significant burden of NCDs in Tasmania and the lack of information about the health literacy of this priority population group, this PhD aimed to codesign health literacy solutions to support and empower pregnant women and mothers with young children (0- 8 years) in Tasmania. An explanatory sequential mixed-methods design following an Ophelia (Optimising Health Literacy and Access) approach was employed to understand health literacy strengths and challenges and NCDs-related knowledge of pregnant women and mothers residing in Tasmania. Across five related phases, the methods included an online survey, interviews and codesign workshops. An online cross-sectional survey (n=194) was conducted using a Health Literacy Questionnaire (HLQ) to identify the health literacy status (strengths and challenges) of pregnant women and mothers with children (0-8 years) in Tasmania. The participating women experienced diverse health literacy strengths and challenges with mean scores varying across the nine HLQ scales. Further, women who were not married, and had chronic health condition(s) faced more significant health literacy challenges. To better understand the meaning of these quantitative results and to enhance understanding of the health literacy strengths and challenges of the target population, an exploratory qualitative study was conducted using semi-structured interviews (n=20) with a subset of the survey participants. Four parent themes were generated from the interview data: perceived knowledge and awareness of NCDs and their causative factors; social determinants of health and the surrounding environment; social networks and support systems; and trust in health services and social connections. These themes highlight the diverse factors that influenced the participant’s access and use of health information and services and their engagement in healthy lifestyle practices and active health management. Consistent with the Ophelia process, the HLQ survey data was further analysed using cluster analysis. The cluster analysis of the HLQ data helped to understand the health literacy needs of the subgroups of women within the target population. The cluster analysis generated seven health literacy profiles of pregnant women and mothers in Tasmania. Each health literacy profile represented subgroups of women within the target population experiencing similar health literacy strengths and challenges across the nine HLQ scales. The health literacy profiles were synthesized with the interview data to develop data-informed hypothetical vignettes. Five vignettes were developed to represent the diversity of the health literacy profiles. Each vignette tells a data-informed hypothetical story of pregnant women and/or mother in Tasmania experiencing diverse health literacy challenges which influence their access to and use of health information and health services. The data-informed vignettes were then presented to stakeholders (n=15) (health professionals working in maternal and child health services and early years services) in Tasmania during codesign workshops to generate intervention ideas and solutions to respond to the health literacy needs of the women represented in each vignette. As a result, 33 solutions across six themes were co-created based on ideas grounded in local wisdom, knowledge and experiences of the Tasmanian stakeholders at the workshops. The codesigned solutions reinforce the need for using holistic and multi-level approaches to address health literacy and broader needs of pregnant women and mothers, rather than placing the entire burden on individuals. Following this, a second round of workshops were conducted with stakeholders (n=8) to generate recommendation ideas to implement the solutions in the Tasmanian context. As a result, four recommendations (with 20 supporting ideas) were generated to guide the implementation of the codesigned solutions. These recommendations will be shared with the stakeholders in Tasmania for consideration in their organisation and practice. The findings serve as a gentle reminder to policymakers and health systems on the importance of moving away from the notion of a “one size fits all” approach. Instead, we need to effectively engage relevant stakeholders (target users and providers) in the planning, designing and implementation of public health solutions if we are to successfully address the health literacy needs of Tasmanian mothers and support them to engage in healthy lifestyle practices. To the best of our knowledge, this PhD is the first in Australia to engage diverse stakeholders to codesign health literacy solutions to address the health needs of pregnant women and mothers. This study warrants future research on the implementation and evaluation of the codesigned solutions to determine if the solutions improve health and equity outcomes for pregnant women and mothers in Tasmania. Further, this research highlights the need to understand the health literacy needs of pregnant women and mothers from diverse cultural and socio-economic backgrounds to identify women who may be at higher risk of experiencing health literacy challenges than others to yield more generalisable and equitable results. This PhD also contributes to a broader global body of evidence by demonstrating how a systematic codesign approach like this can be used elsewhere in Australia as well as globally to assess the health literacy needs of pregnant women and mothers to guide the development of locally relevant solutions capable of responding to local needs, culture and context. This in turn can potentially support the development of a health literacy responsive environment which is more likely to engage pregnant women and mothers in healthy lifestyle practices and reduce the future NCDs burden.