“Equipping and Enabling” health literacy during a “Time of Change”: understanding health literacy and organisational health literacy responsiveness for people leaving prison in later life  

“Equipping and Enabling” health literacy during a “Time of Change”: understanding health literacy and organisational health literacy responsiveness for people leaving prison in later life | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “Equipping and Enabling” health literacy during a “Time of Change”: understanding health literacy and organisational health literacy responsiveness for people leaving prison in later life Ye In (Jane) Hwang, Amanuel Kidane Hagos, Ben Harris-Roxas, Adrienne Lee Withall, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5119702/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background This qualitative study investigated experiences and understandings of health literacy for those released from prison in later life. The global rise in older incarcerated individuals—defined as those aged 50 and above—poses significant public health and health equity challenges. With up to one in four prisoners being categorized as "older," their complex health needs often exceed those of younger inmates and the general community. An important but under-investigated challenge for this older population is navigating health care systems and self-management after release. Research evidence, albeit limited, has consistently identified health literacy deficits in this this population, complicating their health outcomes and reintegration more generally. This study fills a gap in the experience of health literacy for older people leaving prison, thus contributing to conceptual understandings and guiding targeted intervention development for this marginalised population. Results Fifteen people with lived experience of release from prison in older age (mean age = ) and thirteen staff or stakeholders with relevant professional experience from Australia participated in workshops and interviews exploring health literacy during the post-release period. An abductive thematic analysis was applied to the data, guided by the concept of health literacy and organisational health literacy responsiveness. The analysis produced two global themes (“Change” and “Equipped and Enabled”) and seven subthemes (“A demanding time of change”, “Braving a new world”, “Leaving prison care”, “I can only do what I can”, “Help me help myself”, “Others are key”, “Everybody’s problem, nobody’s job”). Together, these themes indicated these individuals are the subject of complex and overlapping life circumstances, with limited resources and support currently available for health literacy both during and after release. Conclusion This population are mostly passive health care and information ‘receivers’ as a result of their imprisonment, who must be equipped and enabled to become more active health literacy ‘doers’. This can be achieved through interventions that prepare the person better for life in community, and improve positive self-concept. Health and custodial organisations have an important role to play, with opportunities for improvement apparent across areas such as communication, focused health literacy policies, and collaboration with community partners. health literacy release reintegration health equity public health prison policy qualitative research lived experience older adults aging Introduction Multiple coinciding sociocultural, legal and demographic trends have resulted in a rapid increase in the number of older people in prisons worldwide (House of Commons Justice Committee, 2020 ; Luallen & Cutler, 2017 ; Rakes et al., 2018 ; Scaggs & Bales, 2017 ). In the prison context, ‘older’ refers to individuals who are 50 years old or older (or 45 + for Aboriginal or Torres Strait Islander peoples) (Australian Institute of Health and Welfare, 2019 ; Merkt et al., 2020 ). This cutoff exists for several reasons, including evidence of shorter life expectancy, accelerated onset of age-related health conditions, marked functional decline, increased health care needs and comorbidities that occur at this age for those who are incarcerated (Merkt et al., 2020 ). Evidence suggests that up to one in four prisoners are now ‘older’ across developed countries, and this number is growing (Australian Institute of Health and Welfare, 2019 ; Merkt et al., 2020 ). An important implication of this trend is that unprecedented numbers of people will be released from prison at an older age (Withall et al., 2022 ). As a marginalised group with high health needs, this results in a unique set of challenges for public health and health equity (Dawes, 2009 ; Dooren et al., 2011 ; Ginnivan et al., 2022 ; Kinner & Wang, 2014 ; B. Williams et al., 2021 ). Older prisoners have more co-occurring health concerns than both younger prisoners (Australian Institute of Health and Welfare, 2019 ; Barry et al., 2020 ; Hayes et al., 2013 ; Wangmo et al., 2016 ), and similar-aged peers in the general community (Fazel et al., 2001 ; Greene et al., 2018 ). Accessing and maintaining healthcare in the community after appreciable periods of incarceration is understandably challenging, with evidence pointing to higher care needs but low formal supports and a range of person- and systems-level obstacles to healthcare after release from prison (Fahmy et al., 2018 ; Forsyth et al., 2015 ; Hagos et al., 2022 ; Hwang et al., 2024 ; Kouyoumdjian et al., 2018 ). This research responds to the challenge of addressing these health needs via a qualitative exploration of health literacy in older people released from prison. Health literacy refers to the ability of individuals to “gain access to, understand and use information in ways which promote and maintain good health for themselves, their families and their communities” (World Health Organization, n.d.). Whilst this definition implies a focus on individual-level capacity, it is widely accepted that health literacy is equally influenced by broader factors. For example, the World Health Organization describe community health literacy and health literacy responsiveness of workers, services, systems, organizations and policy-makers, as key facets of health literacy (World Health Organization, 2022 , p. x). In line with this, Sorenson’s integrative review of definitions and conceptual models of health literacy resulted in an integrated conceptual model which encompass broad societal, environmental and situational determinants of health literacy across the life-course (Sorensen et al., 2012 ). Relatedly, there is increasing recognition of health literacy as a social determinant of health (Nutbeam & Lloyd, 2021 ). This makes health literacy both a challenge and priority for attending to the health needs of people who are justice-involved, as they are already more vulnerable to an array of poor social determinants of health compared to those without justice system contact. Health literacy is thus a useful construct to understand and appropriately respond to the significant public health and health equity challenges experienced by this growing and marginalised population. To date, there has been very little research examining health literacy in prisoner or ex-prisoner populations. Our search of Pubmed, CINAHL and Google Scholar for journal articles up to August 2024 that include “health literacy” and terms related to prisons in their title or abstract returned a total of 23 relevant results. Most studies have focused on health literacy as a barrier or enabler in relation to a specific health concern in ex/prisoners such as COVID-19 vaccination or cancer (Armes et al., 2024 ; Geana et al., 2021 ). Others report on interventions designed to improve health literacy relating to specific conditions such as hepatitis C or opioid use disorder (Langdon et al., 2022 ; Sheehan et al., 2024 ). We found only four studies that examined general or functional health literacy in people with lived experience of imprisonment. Together, these studies indicate limited health literacy in incarcerated populations. First, a study by Mehay and colleagues observed that 72% of their sample of 104 young men in UK prisons had limited health literacy according to the European Health Literacy Survey Questionnaire (Mehay et al., 2021 ). Another smaller study reported that its sample of 32 detained individuals in the United States had ‘difficulty with’ and ‘limited’ health literacy when assessed by mean scores on Rapid Estimate of Adult Literacy in Medicine – Short Form, and the Newest Vital Signs measure (Welvers et al., 2021 ). The other two studies offer more relevant insights for older people. In 2021, Gill and colleagues measured health literacy in a large sample 471 of adults imprisoned in the state of New South Wales, Australia (Gill et al., 2023 ). They reported significantly lower scores on health literacy in the prison sample compared to those in the general Australian population, across all domains of the Health Literacy Questionnaire (HLQ) (Kayser et al., 2018 ). Interestingly, their study found that older participants (45 + years old) had marginally but significantly higher scores for two of the HLQ domains “Ability to actively engage with healthcare professionals” and “Understand health information enough to know what to do” compared to younger participants, though their scores were still significantly below that of the general population. Finally, only one study has examined health literacy among formerly incarcerated individuals (Hadden et al., 2018 ). Of 751 people who were previously incarcerated and currently in primary care facilities in Puerto Rico, 60% had inadequate health literacy according to Newest Vital Sign measure. Of note was that those with lower health literacy were on average older (47 vs 45 years), had three or more criminal convictions, and lower education level than those with adequate health literacy. Of note is the lack of qualitative studies attempting to elucidate experiences of health literacy for this population. Such studies are important to add an explanatory layer to quantitative data, and to advance conceptual understandings, which are vital for effective intervention development. Notwithstanding the general lack of research, the available data indicate that we can reasonably expect a range of health literacy challenges for older people leaving prisons. Moreover, there is a well-established relationship between a range of sociodemographic and psychosocial factors and health literacy challenges in general population studies, which are known areas of weakness in older incarcerated adults. These factors include self-efficacy, self-care behaviours, and patient-provider interaction (Cudjoe et al., 2020 ; Hwang et al., 2024 ; Loeb et al., 2011 ; Nutbeam & Lloyd, 2021 ; Nwakasi et al., 2022 ; Sullivan et al., 2016 ). Further, whilst not directly observing health literacy, the literature shows a range of poor physical and mental health outcomes and barriers to healthcare for older people released from prison in older age (21,22,37–41) Study aims The aim of this qualitative study was to develop our understanding of how health literacy is understood and experienced in people leaving prison in older age and provide insights to guide further research and targeted intervention solutions. We aimed to do this by identifying pertinent experiences in health literacy for this population during the post-release period and interpreting these experiences in light of existing literature and health literacy frameworks. Methods Ethics This study was granted ethical approval from: The University of New South Wales Human Research Ethics Committee [HC220042], Corrective Services NSW Ethics Committee [D2022/0294030], and the Justice Health and Forensic Mental Health Network of NSW Ethics Committee [G477/22]. Design A series of semi-structured interviews and workshops were undertaken with two participant groups from Australia to gain a comprehensive qualitative understanding of health literacy for those leaving prison in older age in Australia from both an individual and systemic point of view. The two participant groups in this study included: (1) individuals with lived experience of release from prison in older age in Australia, and (2) stakeholders with relevant professional contact with this population. Sampling and recruitment Participants in both groups were recruited through a combination of purposive sampling and snowballing. (1) Lived experience participants The inclusion criteria for the lived experience group were: Released from an Australian correctional centre (prison) in the past 24 months Aged 50 years or older at release (45 + if an Aboriginal or Torres Strait Islander person) Spent at least 12 months incarcerated (sentenced or on remand) English ability sufficient to participate in a 60-minute phone interview Participants were first identified by contacting relevant community-based providers of services relevant to this population (e.g., housing). Representatives from organisations who agreed to assist with recruitment then disseminated copies of the participant information statement and consent forms (PISCFs) to potential participants via email or paper copies in person, and/or posted study advertisements on their websites or social media accounts. Assistance for recruitment was also sought from Community Corrections within Corrective Services New South Wales, which is responsible for supervising offenders in the community in the state of New South Wales. Staff from Community Corrections were asked to introduce potential participants to the study with flyers and a copy of the PISCF. Interested participants were instructed to contact the research team directly via phone or email. (2) Stakeholders The inclusion criteria for stakeholders included: Over 18 years of age At least 12 months professional experience with older people leaving prison in Australia Stakeholders whose last experience was more than five years prior were excluded. Purposive sampling was undertaken to identify stakeholder groups with relevant expertise to comment on these issues including prison-based staff (both corrective services and healthcare), community-based support providers, advocacy groups and academic researchers. Relevant organisations which employ such individuals were contacted via email or phone, and help was sought to identify potential participants for this study. A contact person within each organisation assisted this process, by emailing study materials (PISCF and flyer) to potential participants. Screening and consent For both participant groups, expressions of interest were made by directly contacting the research team via phone or email. Participants were screened using the inclusion criteria and upon determining eligibility, the team revisited the PISCF and addressed any additional inquiries. If the participant agreed, their contact information was noted, and an interview or workshop date was scheduled. Lived experience participants were only given the option of a one-on-one phone interview. Stakeholders were encouraged to attend an online workshop, and also given the option of an interview if they were unable to make the workshop date. For interviews, verbal consent was obtained and audio-recorded prior to commencement of the interview. Workshop participants provided signed consent forms via email to the research team prior to the workshop date. Data collection Data collection methods were separate for lived experience participants and stakeholders. (1) Lived experience interviews One-on-one, semi-structured phone interviews were conducted by two researchers. Interview questions were open-ended and informed by a combination of concepts and definitions of health literacy from the literature. These included the World Health Organization definition of health literacy (World Health Organization, 2022 ), the Conversational Health Literacy Assessment Tool (O’Hara et al., 2018 ), and Sorenson’s integrative review (Sorensen et al., 2012 ). They broadly captured person and systems levels issues relating to interaction with healthcare providers and systems, self-management of health, social support, and health information. One additional question about support for health literacy during prison was included. Interview questions were developed in consultation with staff at post-release transition support services who have daily contact with the target population, to ensure appropriateness of wording and concepts. Interviews were audio-recorded and participants were sent 75 Australian Dollars as renumeration for their time. Audio recordings were transcribed by the two interviewers. (2) Stakeholder workshop and interviews Stakeholder workshops and interviews were run by three members of the research team. The workshop host led a discussion of five vignettes. The vignettes were stories about five fictional persons with health literacy profiles that represented typical older people leaving prison. These were developed based on an initial reading of the lived experience interviews, and further community consultation with staff at post-release transition support services. St(46)aff were asked whether these vignettes reflect what they have observed in their professional experience regarding health literacy strengths and challenges in this population and invited further elaboration of these issues. The vignettes provided a data-driven starting point for discussion and prompted further insight into other cases seen by the professional group. Overall, stakeholders affirmed the vignettes as being a good reflection of what they had seen in their professional experiences. Participants were offered 50 Australian dollars as renumeration for their time. Workshops and interviews were recorded online using Microsoft Teams. Audio recordings were downloaded and transcribed by the first author. Analysis Abductive thematic analysis was selected for analyses. Abduction generates an explanatory hypothesis or understanding of an observed phenomenon (Tomasella, 2022 ). Generally speaking, inductive approaches such as reflexive thematic analysis generate theories by observing data (i.e., data driven), whilst deductive approaches such as content analysis start with an existing theory or framework and test whether the collected data fits this theory (i.e., hypothesis driven). Abduction forms a middle ground between these two, by combining inductive interpretations of observed data with existing theory and literature to construct a new, ‘best possible’ understanding of what is observed. The underpinning philosophy is of the pragmatic interpretivist. The resultant ‘explanation’ is both newly observed from the data and informed by existing knowledge. This allows us to organically observe and interpret experiences of health literacy that are important and unique to this population, whilst being mindful of existing conceptual frameworks. Interview and workshop transcripts were imported to NVIVO14 software for analysis. Analysis was conducted by the first author using a combination of guidance from two sources: Tomasella ( 2022 ) and Thompson (2022) which both offer practical steps for conducting abductive thematic analysis. 1. Inductive Coding (semantic and in vivo ) Interview and workshop transcripts were first coded by identifying sizeable sections of text and assigning them descriptive labels. The same text could be coded under multiple, relevant codes. This first round of coding was semantic or in vivo (where the quote itself is the code and no other descriptive label is ascribed). This meant that the text was taken at face level without additional interpretation. 2. Deductive coding according to two frameworks Two complementary conceptual frameworks of health literacy were chosen to frame the health literacy experiences of participants: the conceptual domains of the Health Literacy Questionnaire (HLQ) (Osborne et al., 2013 ), and the organisational health literacy responsiveness framework (Org-HLR)(Trezona et al., 2017 ). First, the ‘nine conceptually distinct areas of health literacy’ that underpinned the development of the 44-item Health Literacy Questionnaire (HLQ) (Table 1 ). The nine domains can further be grouped into three ‘overarching areas’: 1) About self, 2) Dealing with the outside world, and 3) Being resourced. Table 1 Domains and Overarching Areas of the Health Literacy Questionnaire (HLQ; Osborne et al., 2013 ) HLQ Domains HLQ Overarching Areas Feeling understood and supported by healthcare providers About Self Ability to find good health information Ability to actively engage with healthcare providers Dealing with the outside world Navigating the healthcare system Actively managing my health Understanding health information well enough to know what to do Appraisal of health information Being resourced Having sufficient information to manage my health Social support for health The HLQ has been widely used in the Australian general population and in a recent study of health literacy in an adult prisoner population in New South Wales, Australia (Gill et al., 2023). Second is the organisational health literacy responsiveness framework (Org-HLR). This framework was developed to capture the part played by public health and social service organisations in shaping health literacy. Using a participatory research process, it identified seven domains of health literacy responsiveness: 1) External policy and funding environment 2) Leadership and culture 3) Systems, processes and policies 4) Access to services and programs 5) Community engagement and partnerships 6) Communication practices and standards 7) Workforce The codes developed in Step 1 were categorised according to which of the nine domains of the HLQ they aligned with, and again for the seven domains of the Org-HLR. This step was first completed by the first author, with a second researcher also independently coding a subset of the transcripts (N = 3 interviews) to ensure coder reliability. Agreement between the two researchers were initially very high and consensus was reached on points of difference through discussion, before coding (N = 2) more interviews to ensure 100% reliability. 3. Merging codes to create themes (latent) This step involved going back to the inductive codes developed in Step 1, and arranging them at a more interpretive (latent) level. It is akin to the inductive theme development undertaken in reflexive thematic analysis (Braun & Clarke, 2006). The codes were merged and linked into latent themes through an iterative process. This was simultaneously informed by existing literature, conceptual frameworks and theory regarding health literacy. Candidate themes were scrutinized for whether they were internally consistent and sufficiently different from one another, whilst capturing the entire dataset well. 4. Theorising This step involved explaining and tying together the themes to answer the research aims. Interpretative descriptions for each theme were written, mindful of what is known regarding post-release health outcomes in this population, and health literacy concepts for the general population. Using the query function in NVIVO, we also examined how the domains of the HLQ and Org-HLR were represented across the final themes. Broader ‘global themes’ were used to tie together more closely related themes. Results Study participants Fifteen individuals with lived experience of imprisonment in older age participated in interviews from May-July 2022. Their characteristics are presented in Table 2 . Table 2 Demographic characteristics of lived experience interview participants (N = 15) Demographic characteristic n (%) Mean Age (SD; Range) 57 (6.3; 47–69) Male 14 (93%) Aboriginal 6 (40%) Born in Australia 15 (100%) Mean months since leaving prison (Median, Range) 8 (6, 1–24) Most recent state of imprisonment - New South Wales - Victoria 12 (80%) 3 (20%) Highest education - No qualification - Year 10 - Diploma - TAFE or trade certificate - Postgraduate degree 4 (27%) 7 (47%) 1 (7%) 2 (13%) 1 (7%) Living Situation - Own home or with family - Public housing - Renting privately 7 (47%) 6 (40%) 2 (13%) Current income source a - Government payment - Full time work - Part time work 14 (93%) 1 (7%) 1 (7%) Times in prison over lifetime - Once - 2–5 times - Over 10 times - Undisclosed 4 (27%) 6 (40%) 3 (20%) 2 (13%) a One participant reported both government payment and part time work Thirteen stakeholders also participated in the study, including one workshop with N = 7 participants, and N = 6 interviews (September- November 2022). They included corrective services staff (n = 4), post-release transition support service providers (n = 3), academic researchers (n = 2), community service providers (n = 2), a prison health service provider (n = 1) and a lived experience advocate (n = 1). The experience of stakeholders was mostly ‘on-the-ground’ and consisted of providing direct assistance to, or consultation with, people who were being released from prison in later life. All but two participants were currently employed in New South Wales, Australia. Overview of themes: “Equipping and Enabling Health Literacy During a Time of Change” The analysis from the study resulted in two global themes: “Change” and “Equipped and Enabled” with seven subthemes that captured the experiences of health literacy and health management for older people leaving prison. Table 3 provides a summary of each theme along with the core concepts comprising each theme. It also presents how the content of each theme corresponds to the domains of the HLQ and Org-HLR. Table 3 . Name, description and core concepts for each theme, with corresponding HLQ and Org-HLR domains Global themes Subtheme Description Core concepts HLQ Domains* Org-HLR Domains* Change 1A- A demanding time of change A turbulent time marked by significant changes to a person’s circumstances Competing priorities for stability; other responsibilities; de-institutionalisation and independent living; lifestyle changes; uncertainty and disorder; 3 - 1B- Braving a new world Navigating health literacy in an unfamiliar post-release world Changed systems and norms; technological advancement and eHealth; difficulty adjusting to new things; 3; 7; 8 e 1C- Leaving prison care The impact of being cared for, then leaving prison healthcare systems Limited agency during imprisonment; release preparation; care (in)continuity; disrupted or diminished social supports 2; 3; 4; 6; 7 a; b; c; f Equipped and enabled 2A- I can only do what I can An individual’s ability to achieve health literacy is limited to what is possible within their capacity and resources Cognitive and physical ability; affordability and access; education and digital literacy 2; 3; 5; 8; 9 d; e 2B- Help me help myself Health literacy can be encouraged by certain psychosocial enablers Motivation for change; help-seeking; positive sense of self 1; 3; 4; 6 - 2C- Others are key Health literacy is achieved primarily through the support of other people Others as sources of information, encouragement and access; familiarity, comfort and connection; 1; 2; 3; 4; 5; 6; 7; 8; 9 b; d; g 2D- Everybody’s problem, nobody’s job Lack of formal support for health literacy improvement No-one’s responsibility; siloed ways of working; inconsistent experiences 2; 4; 7 a; b; c; e; g *Note: HLQ – Health Literacy Questionnaire; HLQ Domains are 1- Feeling understood and supported by healthcare providers; 2- Having sufficient information to manage my health; 3- Actively managing my health; 4- Social support for health; 5-Appraisal of health information; 6-Ability to actively engage with healthcare providers; 7- Navigating the healthcare system; 8-Ability to find good health information; 9-Understanding health information well enough to know what to do. Org-HLR domains are: a-External policy and funding environment; b-leadership and culture; c-systems, processes and policies; d-access to services and programs; e-community engagement and partnerships; f- communication practices and standards; g-workforce Global Theme 1 – “Change” The first three subthemes reveal that motivation and capacity for health literacy is highly influenced by the significant period of change that the individual is experiencing. The turbulence of this time often renders health literacy a non-priority. The participants perceived gaps in organisational responsiveness to health literacy on the part of prisons, in terms of formal policies relating to health literacy, the provision of health literacy-related information and education, and digital exclusion. Importantly, the ways in which health literacy is enacted differs greatly between prison and community systems, and people found themselves ill-prepared for this change. Key issues thus arising included care in-continuity, de-institutionalisation, and a related lack of agency or self-efficacy. 1A – A demanding time of change Release from prison was commonly described as chaotic and overwhelming, with many urgent and overlapping demands on their often precarious physical, financial, social and emotional situations. You feel a little bit overwhelmed because you've got so many things you've got to do. – Lived experience I think the guys that come out of jail, they've got too much going on and they're just… struggling on the day-to-day living, the things we take for granted. - Staff Other competing priorities and responsibilities in the person’s life often overshadowed health literacy. Most often this referred to the need for stable housing, accommodation and finances, and conflicting responsibilities such as adhering to parole requirements. It's a lot of pressure for somebody, especially when they're older and they already find things difficult to navigate, to be able to comply with parole conditions and with trying to get their health on track. it's not a priority for them, and they're looking at like, you know, “Do I have anywhere to live?” - Staff Importantly, these individuals were experiencing a form of ‘de-institutionalisation’ in shifting from a highly routine and supervised to unsupervised and independent life. They struggled with independent living skills, especially tasks that required independent decision-making and time management. It's just after being in prison, it's just been jail mode, like I’ve been in jail mode. and now I'm just trying to get out of that routine of being in jail. – Lived experience …overwhelming feeling of being out of custody and actually having to manage everything for yourself rather than just being told “Head down to medical at 10:00 AM for your appointment , you know where it is” – Staff 1B – Braving a new world The way that health information and health care is delivered and accessed had changed significantly since the person was incarcerated. This included aspects such as being unfamiliar with the national medical insurance scheme which does not exist in prisons (Medicare), longer waiting times for services and rises in costs of living. A strong recurrent concept was the shift to digital forms of health information communication and healthcare delivery. This unfamiliarity was heightened for those released during the COVID-19 pandemic. It's just the Medicare system itself. I really don't understand… simply because I've never really experienced it… they say “make a claim” but I don't know how to make a claim… those things are still foreign to me – Lived experience With having to, you know, make sure that they had their [COVID-19] proof of vaccinations on [their phone] like all these things are just completely new. – Staff There was often difficulty in adjusting to these new ways and having to learn new things as an older person. This was sometimes related to an older person’s diminished cognitive capacity, and sometimes a resistance to newer ways of doing things. Generally if there's, if they've got cognitive decline, we don't want to introduce anything that's gonna cause them anymore sort of stress. So we will bring it back to the basics in that sense and use, you know, calendars and visual aids. – Staff 1C – Leaving prison care By nature of incarceration, individuals have limited agency in gathering information about, understanding and managing their health needs whilst in prison. In a sense, there was no ‘need’ to understand or appraise health information, as sources of information were limited, and the power to act upon any information, was highly restricted. A lot of people in custody don't know what medications they're on and what they're taking. They're just given seven days of medications. - Staff Their diet when they're in and putting on weight is a real problem, because the meals that we're providing are not really nutritionally sound. But they’ve got no choice really. - Staff Unfortunately, there was a lack of formal release preparation which often left individuals feeling ill-prepared for health management in the community. This was especially pertinent during COVID-19 where most aspects of healthcare were moved to digital forms. So these are the things that you don't get told in jail. They don't say to you, when you get out, you're not going to be able to physically see your doctor. So you're going to have to do this and you're going to have to get your scripts emailed to you. – Lived experience Resumption of care in the community was particularly challenging. I find that with my GP [primary care physician], I've known them for a long time and so they continue to bulk bill me, but they're taking on new patients that they may not bulk bill. Now, if you're an offender and you've been in custody for three or four years and you come out, you no longer have a consistent GP, maybe you've moved areas umm, so nobody has that health history and nobody has that relationship with you over a period of time, it leaves them vulnerable. - Staff With the doctor which I used to see before I went to jail, I was removed from the books so she couldn't even put me back on there. – Lived experience Global Theme 2 – “Equipped and Enabled” The final four subthemes reflect the idea that people leaving prison must be equipped with specific skills to achieve key health literacy, and further enabled through accessibility and the provision formally enforced and support practices. Participants expressed a widespread lack of basic psychosocial, physical and financial resources that would enable a person to confidently and equitably achieve health literacy. Whilst the need for health literacy support was pervasive, a general lack of formal responsibility for healthcare and handover during the transition period resulted in poor health literacy prospects. Resultantly, this population are highly reliant on the informal assistance of others to achieve almost all aspects of health literacy, from accessing information through to engaging with healthcare providers. 2A – I can only do what I can Participants reported that individuals were commonly limited from achieving health literacy at multiple levels. Cognitive capacity was often an issue for understanding and appraising health information, with memory complaints and mistrust or fear commonly mentioned. Yeah sometimes I get confused, and I don't remember, I can't remember things I don't know where I have them and things like that. – Lived experience There's a lot of acquired brain injuries from, you know, being hit in the head and car accidents and it, like I said, the alcohol, the drug use. - Staff A lot of [the population] as well would be like a little bit cognitively impaired and you know … a mistrust, I'd say in relation to it. - Staff Two types of literacy were highlighted as particular enablers (or barriers) for this population: basic literacy from formal education (i.e., writing and reading), and digital literacy. I'm a reasonably well-educated person. So it was easy for me to make those appointments. But I could imagine there will be lots that wouldn't be able to do that. – Lived experience [If] I've got health questions I'll make an appointment to see the doctor and then I'll ask her, but to get on a tablet like the internet and that, I'd throw it out the bloody window. – Lived experience At the systems level, the affordability and availability of health information, resources and services were a strong limiting feature in peoples’ experiences of health literacy. I did have an app on my phone for Optifast which I was doing for my weight loss until like they put their prices right up, - Lived experience A lot of them would never have phone credit, they’ll have a phone, but no credit. They can’t afford to recharge it. – Staff 2B – Help me help myself An array of positive personal traits was mentioned to enable health literacy, such as insight, resilience, resourcefulness, having an open mind, and a willingness to learn. The overarching concepts tying these traits together were awareness and motivation for change, help-seeking, and a positive sense of self. First, participants reported a self-awareness and interest in their increased health needs that come with older age, which presented an important opportunity for health literacy. Staff interpreted this as becoming more mature or ‘settled’ with age. [When I was younger] I just didn't have a need to go to the doctors. I was an A grade footballer right up to when I was 50. and just from 50 to now I've gone downhill, so it's amazing what five years can do yeah. – Lived experience Most men I work with, [at] a specific point, usually their late 40s, early 50s, they start to maybe that's when they mature and work out oh hang on “I need to do this” or “I need to do that” – Staff Being able to ask for help or accepting help was also important but difficult to achieve because of a culture of toughness especially in men, and often associated with imprisonment. It's just a matter of opening up and asking for help… I've learned to ask. because if I need help, I'll ask. Because now, at my age, I'm 60 years of age, I've just got to learn to ask for help. – Lived experience I think that the problem with the “tough guys” in inverted commas, is they've never asked for help. they've always been left to fend for themselves… the guys that have done a long term in jail, they have a different code, a different mindset – Staff Finally, a positive sense of self (i.e., self-efficacy and self-esteem) was instrumental for achieving health literacy, by equipping individuals with the confidence and will to actively engage with people and systems. This self-concept often stemmed from their social experiences and personal achievements. Stigma and shame related to justice-involvement and low education were commonly mentioned here. Conversely, feeling respected by others or having experienced achievements such as education were encouraging. [People with] a long history of incarceration like they just feel like, they've never really been told you're really smart, you're really creative. You could do this. It's like this kind of cycle that, it really impacts their sense of self and their idea of about what can they can actually achieve. – Staff 2C – Others are key ‘Others’ in this case mainly included caseworkers, family members and health professionals. Others facilitated health literacy through four main functions: sourcing and making sense of health information, ensuring access and affordability, encouraging or influencing health-seeking behaviours, and providing familiarity and stability during a tumultuous period. Many just don’t have a social network or know how to navigate any health requirements, and have poor diets, and things like that. So, you know, I think people in your vicinity who care about you can also kind of remind you about things and do just small incremental things and they all add up when you’re at that age. - Staff When I got out, my daughter was helping me and getting me to all my appointments. She helped me a lot. – Lived experience If I needed any help I’d have to ask my caseworker, I'll ask her to look [health information] up on the Google, whatever you call it. – Lived experience In relation to healthcare providers in particular, people leaving prison sought relationships that offer familiarity, comfort and respect. Individuals preferred to build ongoing relationships with the same health providers, especially after disclosing their incarceration history and other life experiences with them. They also wanted to feel comfortable and respected in their interactions with them. I don't want to leave my doctor because he knows my history. I've been with that doctor 14, 15 years. – Lived experience The doctor [and I], we just clicked, and I think that's important you know you have to be able to get on within sort of a friendly basis? To be able to talk of personal issues or whatever, you know, but so you've got to have a bit of friendship and trust with them. – Lived experience …You do get to know all the staff, the medical staff and staff at the front counter you know, and they treat me really well and I think that's good for me. That's good for my for my anxiety and that, because as you get older and are still going in and out of jail, and you think you know “what will people think of me?”, you know, you do worry about a lot of that sort of stuff. – Lived experience 2D – Everybody’s problem, nobody’s job Finally, improving health literacy for older people leaving prison was everybody’s problem, but nobody’s job. That is, whilst health needs of this population were high, it was not a formal job requirement for any of the multiple organisations involved in a person’s release journey. As such, the support people did receive was mostly informal, and was often offered as a form of ‘above and beyonding’ by staff in their already resource-limited jobs. I have a good parole officer so and he knows that I need to do all this and he's very supportive you know go along and get yourself tested mate you know like well, like I've had parole officers before they don't really take you know like a punitive role with you it's all business and nothing else sort of thing. – Lived experience [Parole staff] just don't have time and don’t allocate resources to people who are low risk and fairly high functioning either. So it's the same everywhere. No one has any money. Nobody has any time. - Staff In addition to it not being anyone’s job, there was also a lack of collaboration between organisations. One repeatedly discussed barrier was the inability to access one’s medical records from their imprisonment period, which meant individuals and their health providers were left without important information about their health. If he was in custody for a number of years, then [prison medical services] having his medical history and all of that, it is really difficult to pass those details on post release to his GP or any other sort of medical professionals. Yeah even prison officers don't get access. - Staff I rang up the jail to get by medical records and they said “Oh we haven't got them, we sent it up to [prison medical services], so I rang them up and they wanted $35 for me to get my own records and I don't have money for that. Then my doctor faxed up a request that I signed the paperwork for.. and he still hasn't got them. That was [months ago]. – Lived experience This meant experiences were inconsistent across individuals, but also across instances of release in the same individual. There’s a lot more issues of getting out of my age this time but I think I've had more support this time than I've had before too. It’s always a bit different every time – Lived experience Discussion Key findings To the best of our knowledge, this study is the first to examine experiences of health literacy in people leaving incarceration in later life. The seven themes were brought together into two global themes which spoke to a breadth of person and systems-level challenges and enablers that were pertinent to health literacy experiences for this population, during this time. The first global theme highlights the need to be mindful of the immense physical, systemic, cultural and psychosocial changes that the person is experiencing during the release period. The general instability of this time and ill-preparedness for transition between two very different health systems (prison vs community) often precludes health literacy. The second global theme highlights a range of physical, financial, psychological and social resources that are needed for individuals to achieve health literacy. These needs tended to stem from old age (e.g., cognitive decline), social determinants of health that align with justice involvement (e.g., low literacy) and disconnection from community as a result of imprisonment (e.g., social supports). There were more challenges than strengths used to describe the experience of health literacy for this population. This is in line with existing quantitative studies that demonstrate poor health literacy in justice-involved populations (Gill et al., 2023 ; Hadden et al., 2018 ; Mehay et al., 2021 ; Welvers et al., 2021 ). At an organisational level, the findings align with what is already known about gaps in pre-release planning, integrated care and care continuity for people leaving imprisonment (Forsyth et al., 2015 ; Hagos et al., 2022 ; Hwang et al., 2024 ), the implications of which will be discussed further. The findings also reflect what is known both qualitatively and quantitatively about a range of care challenges and unmet care needs in older people both during and after imprisonment (Barry et al., 2020 ; Hagos et al., 2022 ; Jackson et al., 2020 ; Jimenez et al., 2021 ; B. A. Williams et al., 2010 ). Conceptual implications The findings reveal several novel conceptual insights about health literacy for this population. Intersectionality First, intersectionality (Atewologun, 2018 ) is a key underlying driver of the health literacy experience. That is, older people leaving prison are often the subject of intersecting difficulties across their financial, social, psychological and health-related circumstances and life experiences. The social determinants of ill-health they are commonly subject to, compounded by their multiple and unmet health needs in older age, further interact with the marginalisation and exclusion they experience over lengthy and/or often repeated cycles of incarceration, to finally result in severely diminished personal and social resources needed to negotiate health and navigate health systems after release. Moreover, a perceived lack of focus on health literacy by prisons at an organisational level contributes to these intersecting challenges. As such, older people leaving prison are a high needs group who need additional attention to achieve equitable levels of health literacy compared to those without experiences of incarceration and compared to their younger peers. Agency and de-institutionalisation Health literacy is achieved through a sense of control and agency, which is typically restricted in prison settings. Upon release, individuals are expected to regain and exercise this control over their lives, including management of their health. This is understandably difficult and explains the emergence of the theme of ‘change’. In prison, individuals have minimal agency or independence in their daily activities, including healthcare management. Access to information is also highly regulated (e.g., the internet is generally unavailable) and prisoners are generally not expected to interpret, evaluate, or act upon health information. Consequently, they often face difficulties in managing their lives upon release and have a high reliance on the support of other people. Health literacy is thus challenging as it entails a practicing of agency, through a process of de-institutionalisation, after years of restriction and routine. This can be especially challenging for older individuals who may have spent extended or multiple periods of time in incarceration or institutionalisation in other forms. Sense of self – self-efficacy and stigma An individual's sense of self significantly influences their capacity and motivation for health literacy following release from prison. Aligned with the concept of de-institutionalisation, there aren’t often opportunities for one’s sense of self to grow or be affirmed during imprisonment. Moreover, sense of self can understandably be affected by the lack of agency inherent to prisons, and factors that go hand in hand with justice system involvement, such as low educational attainment, and cognitive disability. This reflects existing literature that self-efficacy is the most consistently reported facilitator of health literacy in the general population (Cudjoe et al., 2020 ), and is closely linked to health seeking behaviours in older people in prison (Loeb et al., 2011 ). Another pertinent aspect of self-concept for this population, which also affects health literacy, was stigma. Stigma, whilst not usually considered in general health literacy frameworks, is understandably a central feature of daily living for people who have experienced incarceration (Feingold, 2021 ). It is a consistent finding that those who have experienced longer periods of incarceration are subject to higher rates of stigmatisation (Feingold, 2021 ). Feelings and experiences of stigma after release, combined with a lack of self-efficacy, as well as prison culture which discourages help-seeking, further exacerbates a general lack of confidence in this population. As a result, individuals may be reluctant to engage with health resources or professionals in the community, especially if these are new or unfamiliar to them. Accordingly, individuals in this study who demonstrated strengths or positivity in health literacy typically reported being in social environments characterised by higher levels of familiarity, trust and respect. Motivation for change On a positive note, older age brought about a sense of maturity, and an associated motivation to manage their changing health needs and to reintegrate well. This makes it an opportune time for health literacy intervention, with potential protective effects on repeat offending. Developmental/life-course criminological theories suggest that people ‘shed’ their criminal identities with age, resulting in a lower tendency for crime in later life (McGee & Farrington, 2019 ). Moreover, there is growing recognition of physical and mental health as key facilitators of post-release re-entry and desistance from crime (Link et al., 2019 ). Integrating health literacy support during this period of change could therefore enhance the likelihood of successful reintegration and reduce the risk of recidivism. Practical implications Building on these findings, there are specific considerations for developing and delivering health literacy interventions for this population. The post-release period is generally chaotic and not ideal for acquiring new skills. Instead, a focus on health literacy skills in preparation for release, should be delivered during a person’s imprisonment. Practices must be consistent and universally applied. There is a clear need for improved organisational health literacy responsiveness, especially by prison health services and correctional facilities. The current findings report no notable strengths, with clear challenges noted across all seven domains of the org-HLR. It is important to note here that there is an explicit emphasis on health literacy in the New South Wales Healthy Prisons Framework, where the current study was based. As the initiatives are still in their infancy, it is likely the effects have not yet been felt by participants. Judging by the overall scarcity of research on health literacy in this population, it is unlikely that prisons in other jurisdictions or countries have had a strong focus on health literacy so far. A focus on health literacy in correctional practice is strongly advised. Once implemented, evaluation of such initiatives against both individual and organisational-level frameworks, such as the HLQ and Org-HLR, would be valuable for building evidence in this area. From these findings, prison health services’ responsibilities should include not only managing inmates' health conditions during incarceration but also facilitating their transition to community care via education on how to manage their conditions in the community and ensuring access to their treatment records. On the other hand, custodial staff should prioritize release planning that emphasises stability during the post-release period and increasing familiarity with the post-release environment. Efforts to maintain social connections in the community are also highly valuable, as this population remain highly reliant on the help of others. Community-based health providers will also benefit from efforts to reduce stigma and ensure continuity of care from pre- to post-incarceration. This will be a challenging task, but will create strong positive impact not only for health literacy but for community reintegration and desistance from further crime overall. Importantly, improving collaboration with community-based healthcare providers is essential to ensure effective care handover and prevent service gaps. Developing integrated care models and focusing on care continuity alongside health literacy initiatives can provide a valuable foundation for these efforts. For example, multidisciplinary care meetings prior to release, that are followed up by targeted assessments in the community by a designated local primary care doctor, would work well to offset the turbulence of the post-release period. The findings identify some unique targets for health literacy improvement in this population. These include basic literacy, time management and planning, daily living skills such as use of transportation and cooking, and digital and eHealth literacy, which are strong emerging determinants of health for older people in the community (Arias López et al., 2023 ). To be most effective, these should be framed towards ‘de-institutionalisation’ of the individual, i.e. growing independence and familiarity with the outside world, and exercising more complex forms of health information appraisal and application. In essence this population are currently passive health care and information ‘receivers’, i.e., they are largely at the receiving end of information and care and lack the confidence or resources to take charge of or improve their health literacy. In general health literacy terms, the unique life experiences and incarceration environment means their ability to ‘access’ and ‘understand’ health information is already restricted (Sorensen et al., 2012 ). Moreover, ‘appraisal’ and ‘application’ of this health information is hardly ever required or allowed during imprisonment, so it is scarcely attained or exercised. However, these skills become necessary to live healthily in the community. Thus, health literacy interventions must be focused on making people independently health literate - health literacy ‘doers’. Following from this, positive self-concept and self-efficacy, will be important to consider in developing interventions as well as management of perceived, anticipated and internalised stigma. These can act as key psychological enablers, to take on and enact health literate behaviours. Strengths and limitations This study contributes to a lack of literature regarding health literacy of previously incarcerated populations discussed in the introduction, and to the notable lack of health literacy studies involving people with low general literacy and those from disadvantaged backgrounds who may have a high health burden (Cudjoe et al., 2020 ). It also considers multiple relevant perspectives to piece together a complementary and holistic picture of health literacy for this population during this time. A limiting factor in this study was its focus on individuals and stakeholders from one state (New South Wales) in Australia. Despite this, the issues uncovered align strongly with existing studies from other developed countries, as the socioeconomic, cultural and public health issues facing justice-involved populations are generally consistent. Intervention development should be guided by co-design and data that is specific to each jurisdictional context. It is important to note that these findings are less a reflection of health literacy ‘performance’ and more an understanding of how health literacy is experienced and negotiated in this population. The measurement of health literacy using quantitative tools such as the HLQ would provide such insight and provide more tangible targets for intervention development. Also, this preliminary study focused on conceptual understandings of health literacy. The resultant concepts can be further developed to build causal, explanatory models of health literacy for this population. These would improve the effectiveness of developed solutions. Conclusions Older people leaving imprisonment are the subject of complex and overlapping life circumstances, limited resources and support for health literacy. These individuals are mostly passive health care and information ‘receivers’, who must be equipped and enabled to become more active health literacy ‘doers’. This can be achieved through interventions that prepare the person better for life in community, and improve positive self-concept. Health and custodial organisations also have an important role to play, with opportunities for improvement apparent across areas such as communication, focused health literacy policies, and collaboration with community partners. Declarations Ethics approval and consent to participate This study was granted ethical approval from: The University of New South Wales Human Research Ethics Committee [HC220042], Corrective Services NSW Ethics Committee [D2022/0294030], and the Justice Health and Forensic Mental Health Network of NSW Ethics Committee [G477/22]. Consent to participate in this research was obtained verbally for some participants and via written form for other participants. Verbal consent was obtained prior to interviews using a verbal consent script and audio recording, as approved via ethical review. Details regarding the consent (date, time, verbal nature, participant’s name) were recorded in a spreadsheet, and the consent itself was audio-recorded. These records were hosted on password-protected folders on the university’s shared drive. Written consent was obtained prior to the study via an online form. Funding This study was funded by the Australian Association of Gerontology 2021 Hal Kendig Research Development Program Grant. Author Contribution YH and SE designed the study, and BHR provided additional intellectual guidance. All authors except AKH were involved in the funding proposal. YH, AKH and SH contributed to gaining ethics approval, and recruitment for the study. AKH and SE collected data. YH and SE analysed the data. YH wrote the draft manuscript. All authors reviewed and approved the manuscript. Acknowledgement The authors would like to acknowledge the participants of the study for their time, and especially the support of the NSW Community Restorative Centre in this work. References Arias López, M. P., Ong, B. A., Frigola, B., Fernández, X., Hicklent, A. L., Obeles, R. S., Rocimo, A. J. T., A. M., & Celi, L. A. (2023). Digital literacy as a new determinant of health: A scoping review. 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You can’t have them in here’: Experiences of accessing medication among older men on entry to prison. Ageing and Society , 36 (6). https://doi.org/10.1017/S0144686X15000331 Tomasella, B. (2022). Abductive Thematic Analysis in Hospitality and Tourism Research. In Contemporary Research Methods in Hospitality and Tourism (pp. 203–219). Emerald Publishing Limited. https://doi.org/10.1108/978-1-80117-546-320221014 Trezona, A., Dodson, S., & Osborne, R. H. (2017). Development of the organisational health literacy responsiveness (Org-HLR) framework in collaboration with health and social services professionals. BMC Health Services Research , 17 (1). https://doi.org/10.1186/s12913-017-2465-z Wangmo, T., Hauri, S., Meyer, A. H., & Elger, B. S. (2016). Patterns of older and younger prisoners’ primary healthcare utilization in Switzerland. International Journal of Prisoner Health , 12 (3). https://doi.org/10.1108/IJPH-03-2016-0006 Welvers, A., Rosenberger, K. D., & Corbridge, S. J. (2021). Health literacy assessment of detained individuals and correctional officers within a large urban jail: Optimizing health education. Journal of Nursing Care Quality , 36 (1), 84–90. https://doi.org/10.1097/NCQ.0000000000000477 Williams, B. A., McGuire, J., Lindsay, R. G., Baillargeon, J., Cenzer, I. S., Lee, S. J., & Kushel, M. (2010). Coming home: Health status and homelessness risk of older pre-release prisoners. Journal of General Internal Medicine , 25 (10), 1038–1044. https://doi.org/10.1007/s11606-010-1416-8 Williams, B., DiTomas, M., & Pachynski, A. (2021). The growing geriatric prison population: A dire public health consequence of mass incarceration. In Journal of the American Geriatrics Society (Vol. 69, Issue 12, pp. 3407–3409). John Wiley and Sons Inc. https://doi.org/10.1111/jgs.17454 Withall, A., Mantell, R., Hwang, Y. I., Jane), Ginnivan, N., & Baidawi, S. (2022). Background Paper: Issues facing older people leaving prison . Issue November. https://aag.asn.au/libraryviewer?ResourceID=74 World Health Organization. (n.d.). Health Literacy . Retrieved September 19 (2024). from https://www.who.int/teams/health-promotion/enhanced-wellbeing/ninth-global-conference/health-literacy World Health Organization (2022). Health literacy development for the prevention and control of noncommunicable diseases. Case studies from WHO National Health Literacy Demonstration Projects Volume 4 . Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5119702","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":366358142,"identity":"0919fa06-c35a-4a99-b090-f41071c373d6","order_by":0,"name":"Ye In (Jane) Hwang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA/klEQVRIiWNgGAWjYBACxgYYwcB8ACqWQLQWNphSAloQ+hh4DIjTwtx+9uADxh2H5c3513yTLvhzmIGfPceA4WcbHgt68pINGM8cNtw54+026Zlthxkke94YMPbi09KQYybB2HabccONs9ukeRtuMxjcANrCi09L/xvzH0At9htunHkmzfPnNoM9UAvjX3xaZuSYMQC1JG4438MmzcMGtEUix4AZry0z3hhLJLb9T95wg83YmrftP4/EmWcFh2XO4dZi2J9j+OFjW5rthvOHH97m+ZMmx9+evPHhmzI8WhoYoBEhASYZeEDEAdwaGBjk4Sx+vOpGwSgYBaNgJAMAbY5VgP7WoHMAAAAASUVORK5CYII=","orcid":"","institution":"UNSW Sydney","correspondingAuthor":true,"prefix":"","firstName":"Ye","middleName":"In (Jane)","lastName":"Hwang","suffix":""},{"id":366358143,"identity":"7a172dcb-62a8-416c-b2cf-f366816e6411","order_by":1,"name":"Amanuel Kidane Hagos","email":"","orcid":"","institution":"UNSW Sydney","correspondingAuthor":false,"prefix":"","firstName":"Amanuel","middleName":"Kidane","lastName":"Hagos","suffix":""},{"id":366358144,"identity":"e77ab4ca-e7b6-4bc2-bbdc-db5d900b46d1","order_by":2,"name":"Ben Harris-Roxas","email":"","orcid":"","institution":"UNSW Sydney","correspondingAuthor":false,"prefix":"","firstName":"Ben","middleName":"","lastName":"Harris-Roxas","suffix":""},{"id":366358145,"identity":"f9453077-7146-4587-b025-dcf0c160271b","order_by":3,"name":"Adrienne Lee Withall","email":"","orcid":"","institution":"UNSW Sydney","correspondingAuthor":false,"prefix":"","firstName":"Adrienne","middleName":"Lee","lastName":"Withall","suffix":""},{"id":366358146,"identity":"d634abd0-6257-44f8-87a6-d89edfb4c525","order_by":4,"name":"Tony Butler","email":"","orcid":"","institution":"UNSW Sydney","correspondingAuthor":false,"prefix":"","firstName":"Tony","middleName":"","lastName":"Butler","suffix":""},{"id":366358148,"identity":"2f400744-75ea-48ed-af49-a3b4a118f451","order_by":5,"name":"Stephen Hampton","email":"","orcid":"","institution":"justice health forensic","correspondingAuthor":false,"prefix":"","firstName":"Stephen","middleName":"","lastName":"Hampton","suffix":""},{"id":366358149,"identity":"47f092c2-3d45-4625-b862-1827b0263e0a","order_by":6,"name":"Christina Cheng","email":"","orcid":"","institution":"Swinburne University of Technology","correspondingAuthor":false,"prefix":"","firstName":"Christina","middleName":"","lastName":"Cheng","suffix":""},{"id":366358150,"identity":"b6bb36d8-c0f5-4fe7-8879-73183ede93ce","order_by":7,"name":"Shandell Elmer","email":"","orcid":"","institution":"University of Tasmania","correspondingAuthor":false,"prefix":"","firstName":"Shandell","middleName":"","lastName":"Elmer","suffix":""}],"badges":[],"createdAt":"2024-09-20 00:38:31","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5119702/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5119702/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":73080863,"identity":"8685f620-54e1-4544-a0be-819cb0dfb83e","added_by":"auto","created_at":"2025-01-06 14:09:02","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":806129,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5119702/v1/4bc90ac0-dd9f-4336-80db-3c1318062fc8.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":" “Equipping and Enabling” health literacy during a “Time of Change”: understanding health literacy and organisational health literacy responsiveness for people leaving prison in later life ","fulltext":[{"header":"Introduction","content":"\u003cp\u003eMultiple coinciding sociocultural, legal and demographic trends have resulted in a rapid increase in the number of older people in prisons worldwide (House of Commons Justice Committee, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Luallen \u0026amp; Cutler, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Rakes et al., \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Scaggs \u0026amp; Bales, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). In the prison context, ‘older’ refers to individuals who are 50 years old or older (or 45 + for Aboriginal or Torres Strait Islander peoples) (Australian Institute of Health and Welfare, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; Merkt et al., \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). This cutoff exists for several reasons, including evidence of shorter life expectancy, accelerated onset of age-related health conditions, marked functional decline, increased health care needs and comorbidities that occur at this age for those who are incarcerated (Merkt et al., \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Evidence suggests that up to one in four prisoners are now ‘older’ across developed countries, and this number is growing (Australian Institute of Health and Welfare, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; Merkt et al., \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). An important implication of this trend is that unprecedented numbers of people will be released from prison at an older age (Withall et al., \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAs a marginalised group with high health needs, this results in a unique set of challenges for public health and health equity (Dawes, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2009\u003c/span\u003e; Dooren et al., \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Ginnivan et al., \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Kinner \u0026amp; Wang, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2014\u003c/span\u003e; B. Williams et al., \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Older prisoners have more co-occurring health concerns than both younger prisoners (Australian Institute of Health and Welfare, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; Barry et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Hayes et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Wangmo et al., \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e2016\u003c/span\u003e), and similar-aged peers in the general community (Fazel et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2001\u003c/span\u003e; Greene et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Accessing and maintaining healthcare in the community after appreciable periods of incarceration is understandably challenging, with evidence pointing to higher care needs but low formal supports and a range of person- and systems-level obstacles to healthcare after release from prison (Fahmy et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Forsyth et al., \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; Hagos et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Hwang et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Kouyoumdjian et al., \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis research responds to the challenge of addressing these health needs via a qualitative exploration of health literacy in older people released from prison. Health literacy refers to the ability of individuals to “gain access to, understand and use information in ways which promote and maintain good health for themselves, their families and their communities” (World Health Organization, n.d.). Whilst this definition implies a focus on individual-level capacity, it is widely accepted that health literacy is equally influenced by broader factors. For example, the World Health Organization describe community health literacy and health literacy responsiveness of workers, services, systems, organizations and policy-makers, as key facets of health literacy (World Health Organization, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e2022\u003c/span\u003e, p. x). In line with this, Sorenson’s integrative review of definitions and conceptual models of health literacy resulted in an integrated conceptual model which encompass broad societal, environmental and situational determinants of health literacy across the life-course (Sorensen et al., \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eRelatedly, there is increasing recognition of health literacy as a social determinant of health (Nutbeam \u0026amp; Lloyd, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). This makes health literacy both a challenge and priority for attending to the health needs of people who are justice-involved, as they are already more vulnerable to an array of poor social determinants of health compared to those without justice system contact. Health literacy is thus a useful construct to understand and appropriately respond to the significant public health and health equity challenges experienced by this growing and marginalised population.\u003c/p\u003e \u003cp\u003eTo date, there has been very little research examining health literacy in prisoner or ex-prisoner populations. Our search of Pubmed, CINAHL and Google Scholar for journal articles up to August 2024 that include “health literacy” and terms related to prisons in their title or abstract returned a total of 23 relevant results. Most studies have focused on health literacy as a barrier or enabler in relation to a specific health concern in ex/prisoners such as COVID-19 vaccination or cancer (Armes et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Geana et al., \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Others report on interventions designed to improve health literacy relating to specific conditions such as hepatitis C or opioid use disorder (Langdon et al., \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Sheehan et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2024\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eWe found only four studies that examined general or functional health literacy in people with lived experience of imprisonment. Together, these studies indicate limited health literacy in incarcerated populations. First, a study by Mehay and colleagues observed that 72% of their sample of 104 young men in UK prisons had limited health literacy according to the European Health Literacy Survey Questionnaire (Mehay et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Another smaller study reported that its sample of 32 detained individuals in the United States had ‘difficulty with’ and ‘limited’ health literacy when assessed by mean scores on Rapid Estimate of Adult Literacy in Medicine – Short Form, and the Newest Vital Signs measure (Welvers et al., \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e2021\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe other two studies offer more relevant insights for older people. In 2021, Gill and colleagues measured health literacy in a large sample 471 of adults imprisoned in the state of New South Wales, Australia (Gill et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). They reported significantly lower scores on health literacy in the prison sample compared to those in the general Australian population, across all domains of the Health Literacy Questionnaire (HLQ) (Kayser et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Interestingly, their study found that older participants (45 + years old) had marginally but significantly higher scores for two of the HLQ domains “Ability to actively engage with healthcare professionals” and “Understand health information enough to know what to do” compared to younger participants, though their scores were still significantly below that of the general population. Finally, only one study has examined health literacy among formerly incarcerated individuals (Hadden et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Of 751 people who were previously incarcerated and currently in primary care facilities in Puerto Rico, 60% had inadequate health literacy according to Newest Vital Sign measure. Of note was that those with lower health literacy were on average older (47 vs 45 years), had three or more criminal convictions, and lower education level than those with adequate health literacy.\u003c/p\u003e \u003cp\u003eOf note is the lack of qualitative studies attempting to elucidate experiences of health literacy for this population. Such studies are important to add an explanatory layer to quantitative data, and to advance conceptual understandings, which are vital for effective intervention development. Notwithstanding the general lack of research, the available data indicate that we can reasonably expect a range of health literacy challenges for older people leaving prisons. Moreover, there is a well-established relationship between a range of sociodemographic and psychosocial factors and health literacy challenges in general population studies, which are known areas of weakness in older incarcerated adults. These factors include self-efficacy, self-care behaviours, and patient-provider interaction (Cudjoe et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Hwang et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Loeb et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Nutbeam \u0026amp; Lloyd, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Nwakasi et al., \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Sullivan et al., \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e2016\u003c/span\u003e). Further, whilst not directly observing health literacy, the literature shows a range of poor physical and mental health outcomes and barriers to healthcare for older people released from prison in older age (21,22,37–41)\u003c/p\u003e\n\u003ch3\u003eStudy aims\u003c/h3\u003e\n\u003cp\u003eThe aim of this qualitative study was to develop our understanding of how health literacy is understood and experienced in people leaving prison in older age and provide insights to guide further research and targeted intervention solutions. We aimed to do this by identifying pertinent experiences in health literacy for this population during the post-release period and interpreting these experiences in light of existing literature and health literacy frameworks.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003cdiv id=\"Sec4\" class=\"Section3\"\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Methods","content":"\u003ch2\u003eEthics\u003c/h2\u003e\n\u003cp\u003eThis study was granted ethical approval from: The University of New South Wales Human Research Ethics Committee [HC220042], Corrective Services NSW Ethics Committee [D2022/0294030], and the Justice Health and Forensic Mental Health Network of NSW Ethics Committee [G477/22].\u003c/p\u003e\n\u003ch3\u003eDesign\u003c/h3\u003e\n\u003cp\u003eA series of semi-structured interviews and workshops were undertaken with two participant groups from Australia to gain a comprehensive qualitative understanding of health literacy for those leaving prison in older age in Australia from both an individual and systemic point of view. The two participant groups in this study included: (1) individuals with lived experience of release from prison in older age in Australia, and (2) stakeholders with relevant professional contact with this population.\u003c/p\u003e\n\u003ch3\u003eSampling and recruitment\u003c/h3\u003e\n\u003cp\u003eParticipants in both groups were recruited through a combination of purposive sampling and snowballing.\u003c/p\u003e\n\u003ch3\u003e(1) Lived experience participants\u003c/h3\u003e\n\u003cp\u003eThe inclusion criteria for the lived experience group were:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\n \u003cp\u003eReleased from an Australian correctional centre (prison) in the past 24 months\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eAged 50 years or older at release (45\u0026thinsp;+\u0026thinsp;if an Aboriginal or Torres Strait Islander person)\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eSpent at least 12 months incarcerated (sentenced or on remand)\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eEnglish ability sufficient to participate in a 60-minute phone interview\u003c/p\u003e\n \u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eParticipants were first identified by contacting relevant community-based providers of services relevant to this population (e.g., housing). Representatives from organisations who agreed to assist with recruitment then disseminated copies of the participant information statement and consent forms (PISCFs) to potential participants via email or paper copies in person, and/or posted study advertisements on their websites or social media accounts. Assistance for recruitment was also sought from Community Corrections within Corrective Services New South Wales, which is responsible for supervising offenders in the community in the state of New South Wales. Staff from Community Corrections were asked to introduce potential participants to the study with flyers and a copy of the PISCF. Interested participants were instructed to contact the research team directly via phone or email.\u003c/p\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch3\u003e(2) Stakeholders\u003c/h3\u003e\n \u003cp\u003eThe inclusion criteria for stakeholders included:\u003c/p\u003e\n \u003cul\u003e\n \u003cli\u003e\n \u003cp\u003eOver 18 years of age\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eAt least 12 months professional experience with older people leaving prison in Australia\u003c/p\u003e\n \u003c/li\u003e\n \u003c/ul\u003e\n \u003cp\u003eStakeholders whose last experience was more than five years prior were excluded. Purposive sampling was undertaken to identify stakeholder groups with relevant expertise to comment on these issues including prison-based staff (both corrective services and healthcare), community-based support providers, advocacy groups and academic researchers. Relevant organisations which employ such individuals were contacted via email or phone, and help was sought to identify potential participants for this study. A contact person within each organisation assisted this process, by emailing study materials (PISCF and flyer) to potential participants.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003eScreening and consent\u003c/h3\u003e\n\u003cp\u003eFor both participant groups, expressions of interest were made by directly contacting the research team via phone or email. Participants were screened using the inclusion criteria and upon determining eligibility, the team revisited the PISCF and addressed any additional inquiries. If the participant agreed, their contact information was noted, and an interview or workshop date was scheduled. Lived experience participants were only given the option of a one-on-one phone interview. Stakeholders were encouraged to attend an online workshop, and also given the option of an interview if they were unable to make the workshop date. For interviews, verbal consent was obtained and audio-recorded prior to commencement of the interview. Workshop participants provided signed consent forms via email to the research team prior to the workshop date.\u003c/p\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eData collection methods were separate for lived experience participants and stakeholders.\u003c/p\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n \u003ch3\u003e(1) Lived experience interviews\u003c/h3\u003e\n \u003cp\u003eOne-on-one, semi-structured phone interviews were conducted by two researchers. Interview questions were open-ended and informed by a combination of concepts and definitions of health literacy from the literature. These included the World Health Organization definition of health literacy (World Health Organization, \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e), the Conversational Health Literacy Assessment Tool (O\u0026rsquo;Hara et al., \u003cspan class=\"CitationRef\"\u003e2018\u003c/span\u003e), and Sorenson\u0026rsquo;s integrative review (Sorensen et al., \u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e). They broadly captured person and systems levels issues relating to interaction with healthcare providers and systems, self-management of health, social support, and health information. One additional question about support for health literacy during prison was included. Interview questions were developed in consultation with staff at post-release transition support services who have daily contact with the target population, to ensure appropriateness of wording and concepts. Interviews were audio-recorded and participants were sent 75 Australian Dollars as renumeration for their time. Audio recordings were transcribed by the two interviewers.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n \u003ch3\u003e(2) Stakeholder workshop and interviews\u003c/h3\u003e\n \u003cp\u003eStakeholder workshops and interviews were run by three members of the research team. The workshop host led a discussion of five vignettes. The vignettes were stories about five fictional persons with health literacy profiles that represented typical older people leaving prison. These were developed based on an initial reading of the lived experience interviews, and further community consultation with staff at post-release transition support services. St(46)aff were asked whether these vignettes reflect what they have observed in their professional experience regarding health literacy strengths and challenges in this population and invited further elaboration of these issues. The vignettes provided a data-driven starting point for discussion and prompted further insight into other cases seen by the professional group. Overall, stakeholders affirmed the vignettes as being a good reflection of what they had seen in their professional experiences. Participants were offered 50 Australian dollars as renumeration for their time. Workshops and interviews were recorded online using Microsoft Teams. Audio recordings were downloaded and transcribed by the first author.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\n \u003ch2\u003eAnalysis\u003c/h2\u003e\n \u003cp\u003eAbductive thematic analysis was selected for analyses. Abduction generates an explanatory hypothesis or understanding of an observed phenomenon (Tomasella, \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). Generally speaking, inductive approaches such as reflexive thematic analysis generate theories by observing data (i.e., data driven), whilst deductive approaches such as content analysis start with an existing theory or framework and test whether the collected data fits this theory (i.e., hypothesis driven). Abduction forms a middle ground between these two, by combining inductive interpretations of observed data with existing theory and literature to construct a new, \u0026lsquo;best possible\u0026rsquo; understanding of what is observed. The underpinning philosophy is of the pragmatic interpretivist. The resultant \u0026lsquo;explanation\u0026rsquo; is both newly observed from the data and informed by existing knowledge. This allows us to organically observe and interpret experiences of health literacy that are important and unique to this population, whilst being mindful of existing conceptual frameworks.\u003c/p\u003e\n \u003cp\u003eInterview and workshop transcripts were imported to NVIVO14 software for analysis. Analysis was conducted by the first author using a combination of guidance from two sources: Tomasella (\u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e) and Thompson (2022) which both offer practical steps for conducting abductive thematic analysis.\u003c/p\u003e\n \u003cp\u003e1. Inductive Coding (semantic and \u003cem\u003ein vivo\u003c/em\u003e)\u003c/p\u003e\n \u003cp\u003eInterview and workshop transcripts were first coded by identifying sizeable sections of text and assigning them descriptive labels. The same text could be coded under multiple, relevant codes. This first round of coding was semantic or \u003cem\u003ein vivo\u003c/em\u003e (where the quote itself is the code and no other descriptive label is ascribed). This meant that the text was taken at face level without additional interpretation.\u003c/p\u003e\n \u003cp\u003e2. Deductive coding according to two frameworks\u003c/p\u003e\n \u003cp\u003eTwo complementary conceptual frameworks of health literacy were chosen to frame the health literacy experiences of participants: the conceptual domains of the Health Literacy Questionnaire (HLQ) (Osborne et al., \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e), and the organisational health literacy responsiveness framework (Org-HLR)(Trezona et al., \u003cspan class=\"CitationRef\"\u003e2017\u003c/span\u003e). First, the \u0026lsquo;nine conceptually distinct areas of health literacy\u0026rsquo; that underpinned the development of the 44-item Health Literacy Questionnaire (HLQ) (Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e). The nine domains can further be grouped into three \u0026lsquo;overarching areas\u0026rsquo;: 1) About self, 2) Dealing with the outside world, and 3) Being resourced.\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eDomains and Overarching Areas of the Health Literacy Questionnaire (HLQ; Osborne et al., \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e)\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eHLQ Domains\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eHLQ Overarching Areas\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFeeling understood and supported by healthcare providers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" align=\"left\"\u003e\n \u003cp\u003eAbout Self\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAbility to find good health information\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAbility to actively engage with healthcare providers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"4\" align=\"left\"\u003e\n \u003cp\u003eDealing with the outside world\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNavigating the healthcare system\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eActively managing my health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnderstanding health information well enough to know what to do\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAppraisal of health information\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"3\" align=\"left\"\u003e\n \u003cp\u003eBeing resourced\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHaving sufficient information to manage my health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSocial support for health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003eThe HLQ has been widely used in the Australian general population and in a recent study of health literacy in an adult prisoner population in New South Wales, Australia (Gill et al., 2023). Second is the organisational health literacy responsiveness framework (Org-HLR). This framework was developed to capture the part played by public health and social service organisations in shaping health literacy. Using a participatory research process, it identified seven domains of health literacy responsiveness:\u003c/p\u003e\n \u003cp style=\"display: inline !important;\"\u003e1)\u0026nbsp;\u0026nbsp; External policy and funding environment\u003c/p\u003e\n \u003cp\u003e2)\u0026nbsp;\u0026nbsp; Leadership and culture\u003c/p\u003e\n \u003cp\u003e3)\u0026nbsp;\u0026nbsp; Systems, processes and policies\u003c/p\u003e\n \u003cp\u003e4)\u0026nbsp;\u0026nbsp; Access to services and programs\u003c/p\u003e\n \u003cp\u003e5)\u0026nbsp;\u0026nbsp; Community engagement and partnerships\u003c/p\u003e\n \u003cp\u003e6)\u0026nbsp;\u0026nbsp; Communication practices and standards\u003c/p\u003e\n \u003cp\u003e7)\u0026nbsp;\u0026nbsp; Workforce\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eThe codes developed in Step 1 were categorised according to which of the nine domains of the HLQ they aligned with, and again for the seven domains of the Org-HLR. This step was first completed by the first author, with a second researcher also independently coding a subset of the transcripts (N\u0026thinsp;=\u0026thinsp;3 interviews) to ensure coder reliability. Agreement between the two researchers were initially very high and consensus was reached on points of difference through discussion, before coding (N\u0026thinsp;=\u0026thinsp;2) more interviews to ensure 100% reliability.\u003c/p\u003e\n \u003cp\u003e3. Merging codes to create themes (latent)\u003c/p\u003e\n \u003cp\u003eThis step involved going back to the inductive codes developed in Step 1, and arranging them at a more interpretive (latent) level. It is akin to the inductive theme development undertaken in reflexive thematic analysis (Braun \u0026amp; Clarke, 2006). The codes were merged and linked into latent themes through an iterative process. This was simultaneously informed by existing literature, conceptual frameworks and theory regarding health literacy. Candidate themes were scrutinized for whether they were internally consistent and sufficiently different from one another, whilst capturing the entire dataset well.\u003c/p\u003e\n \u003cp\u003e4. Theorising\u003c/p\u003e\n \u003cp\u003eThis step involved explaining and tying together the themes to answer the research aims. Interpretative descriptions for each theme were written, mindful of what is known regarding post-release health outcomes in this population, and health literacy concepts for the general population. Using the query function in NVIVO, we also examined how the domains of the HLQ and Org-HLR were represented across the final themes. Broader \u0026lsquo;global themes\u0026rsquo; were used to tie together more closely related themes.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eStudy participants\u003c/h2\u003e \u003cp\u003eFifteen individuals with lived experience of imprisonment in older age participated in interviews from May-July 2022. Their characteristics are presented in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of lived experience interview participants (N\u0026thinsp;=\u0026thinsp;15)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDemographic characteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003en\u003c/em\u003e (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean Age (SD; Range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e57 (6.3; 47\u0026ndash;69)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14 (93%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAboriginal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (40%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBorn in Australia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean months since leaving prison (Median, Range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (6, 1\u0026ndash;24)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMost recent state of imprisonment\u003c/p\u003e \u003cp\u003e- New South Wales\u003c/p\u003e \u003cp\u003e- Victoria\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (80%)\u003c/p\u003e \u003cp\u003e3 (20%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHighest education\u003c/p\u003e \u003cp\u003e- No qualification\u003c/p\u003e \u003cp\u003e- Year 10\u003c/p\u003e \u003cp\u003e- Diploma\u003c/p\u003e \u003cp\u003e- TAFE or trade certificate\u003c/p\u003e \u003cp\u003e- Postgraduate degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (27%)\u003c/p\u003e \u003cp\u003e7 (47%)\u003c/p\u003e \u003cp\u003e1 (7%)\u003c/p\u003e \u003cp\u003e2 (13%)\u003c/p\u003e \u003cp\u003e1 (7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLiving Situation\u003c/p\u003e \u003cp\u003e- Own home or with family\u003c/p\u003e \u003cp\u003e- Public housing\u003c/p\u003e \u003cp\u003e- Renting privately\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (47%)\u003c/p\u003e \u003cp\u003e6 (40%)\u003c/p\u003e \u003cp\u003e2 (13%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCurrent income source\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e- Government payment\u003c/p\u003e \u003cp\u003e- Full time work\u003c/p\u003e \u003cp\u003e- Part time work\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14 (93%)\u003c/p\u003e \u003cp\u003e1 (7%)\u003c/p\u003e \u003cp\u003e1 (7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTimes in prison over lifetime\u003c/p\u003e \u003cp\u003e- Once\u003c/p\u003e \u003cp\u003e- 2\u0026ndash;5 times\u003c/p\u003e \u003cp\u003e- Over 10 times\u003c/p\u003e \u003cp\u003e- Undisclosed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (27%)\u003c/p\u003e \u003cp\u003e6 (40%)\u003c/p\u003e \u003cp\u003e3 (20%)\u003c/p\u003e \u003cp\u003e2 (13%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e\u003csup\u003ea\u003c/sup\u003eOne participant reported both government payment and part time work\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThirteen stakeholders also participated in the study, including one workshop with N\u0026thinsp;=\u0026thinsp;7 participants, and N\u0026thinsp;=\u0026thinsp;6 interviews (September- November 2022). They included corrective services staff (n\u0026thinsp;=\u0026thinsp;4), post-release transition support service providers (n\u0026thinsp;=\u0026thinsp;3), academic researchers (n\u0026thinsp;=\u0026thinsp;2), community service providers (n\u0026thinsp;=\u0026thinsp;2), a prison health service provider (n\u0026thinsp;=\u0026thinsp;1) and a lived experience advocate (n\u0026thinsp;=\u0026thinsp;1). The experience of stakeholders was mostly \u0026lsquo;on-the-ground\u0026rsquo; and consisted of providing direct assistance to, or consultation with, people who were being released from prison in later life. All but two participants were currently employed in New South Wales, Australia.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eOverview of themes: \u0026ldquo;Equipping and Enabling Health Literacy During a Time of Change\u0026rdquo;\u003c/h2\u003e \u003cp\u003eThe analysis from the study resulted in two global themes: \u0026ldquo;Change\u0026rdquo; and \u0026ldquo;Equipped and Enabled\u0026rdquo; with seven subthemes that captured the experiences of health literacy and health management for older people leaving prison. Table\u0026nbsp;3 provides a summary of each theme along with the core concepts comprising each theme. It also presents how the content of each theme corresponds to the domains of the HLQ and Org-HLR.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTable 3\u003c/em\u003e\u003c/strong\u003e. Name, description and core concepts for each theme, with corresponding HLQ and Org-HLR domains\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9%;\"\u003e\n \u003cp\u003eGlobal themes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003eSubtheme\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eDescription\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eCore concepts\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003eHLQ Domains*\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003eOrg-HLR Domains*\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 9%;\"\u003e\n \u003cp\u003eChange\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e1A- A demanding time of change\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eA turbulent time marked by significant changes to a person\u0026rsquo;s circumstances\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eCompeting priorities for stability; other responsibilities; de-institutionalisation and independent living; lifestyle changes; uncertainty and disorder;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e1B- Braving a new world\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eNavigating health literacy in an unfamiliar post-release world\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eChanged systems and norms; technological advancement and eHealth; difficulty adjusting to new things;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e3; 7; 8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003ee\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e1C- Leaving prison care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eThe impact of being cared for, then leaving prison healthcare systems\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eLimited agency during imprisonment; release preparation; care (in)continuity; disrupted or diminished social supports\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e2; 3; 4; 6; 7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003ea; b; c; f\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 9%;\"\u003e\n \u003cp\u003eEquipped and enabled\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e2A- I can only do what I can\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eAn individual\u0026rsquo;s ability to achieve health literacy is limited to what is possible within their capacity and resources\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eCognitive and physical ability; affordability and access; education and digital literacy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e2; 3; 5; 8; 9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003ed; e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e2B- Help me help myself\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eHealth literacy can be encouraged by certain psychosocial enablers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eMotivation for change; help-seeking; positive sense of self\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e1; 3; 4; 6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e2C- Others are key\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eHealth literacy is achieved primarily through the support of other people\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eOthers as sources of information, encouragement and access; familiarity, comfort and connection;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e1; 2; 3; 4; 5; 6; 7; 8; 9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003eb; d; g\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 16%;\"\u003e\n \u003cp\u003e2D- Everybody\u0026rsquo;s problem, nobody\u0026rsquo;s job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 28%;\"\u003e\n \u003cp\u003eLack of formal support for health literacy improvement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 29%;\"\u003e\n \u003cp\u003eNo-one\u0026rsquo;s responsibility; siloed ways of working; inconsistent experiences\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003e2; 4; 7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8%;\"\u003e\n \u003cp\u003ea; b; c; e; g\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003e*Note:\u003c/em\u003e HLQ \u0026ndash; Health Literacy Questionnaire; HLQ Domains are 1- Feeling understood and supported by healthcare providers; 2- Having sufficient information to manage my health; 3- Actively managing my health; 4- Social support for health; 5-Appraisal of health information; 6-Ability to actively engage with healthcare providers; 7- Navigating the healthcare system; 8-Ability to find good health information; 9-Understanding health information well enough to know what to do. Org-HLR domains are: a-External policy and funding environment; b-leadership and culture; c-systems, processes and policies; d-access to services and programs; e-community engagement and partnerships; f- communication practices and standards; g-workforce\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eGlobal Theme 1 \u0026ndash; \u0026ldquo;Change\u0026rdquo;\u003c/h2\u003e \u003cp\u003eThe first three subthemes reveal that motivation and capacity for health literacy is highly influenced by the significant period of change that the individual is experiencing. The turbulence of this time often renders health literacy a non-priority. The participants perceived gaps in organisational responsiveness to health literacy on the part of prisons, in terms of formal policies relating to health literacy, the provision of health literacy-related information and education, and digital exclusion. Importantly, the ways in which health literacy is enacted differs greatly between prison and community systems, and people found themselves ill-prepared for this change. Key issues thus arising included care in-continuity, de-institutionalisation, and a related lack of agency or self-efficacy.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e1A \u0026ndash; A demanding time of change\u003c/h2\u003e \u003cp\u003eRelease from prison was commonly described as chaotic and overwhelming, with many urgent and overlapping demands on their often precarious physical, financial, social and emotional situations.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eYou feel a little bit overwhelmed because you've got so many things you've got to do. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI think the guys that come out of jail, they've got too much going on and they're just\u0026hellip; struggling on the day-to-day living, the things we take for granted. - Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOther competing priorities and responsibilities in the person\u0026rsquo;s life often overshadowed health literacy. Most often this referred to the need for stable housing, accommodation and finances, and conflicting responsibilities such as adhering to parole requirements.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt's a lot of pressure for somebody, especially when they're older and they already find things difficult to navigate, to be able to comply with parole conditions and with trying to get their health on track. it's not a priority for them, and they're looking at like, you know, \u0026ldquo;Do I have anywhere to live?\u0026rdquo; - Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eImportantly, these individuals were experiencing a form of \u0026lsquo;de-institutionalisation\u0026rsquo; in shifting from a highly routine and supervised to unsupervised and independent life. They struggled with independent living skills, especially tasks that required independent decision-making and time management.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt's just after being in prison, it's just been jail mode, like I\u0026rsquo;ve been in jail mode. and now I'm just trying to get out of that routine of being in jail. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026hellip;overwhelming feeling of being out of custody and actually having to manage everything for yourself rather than just being told \u0026ldquo;Head down to medical at 10:00 AM for your appointment\u003c/em\u003e, you \u003cem\u003eknow where it is\u0026rdquo; \u0026ndash; Staff\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003e1B \u0026ndash; Braving a new world\u003c/h2\u003e \u003cp\u003eThe way that health information and health care is delivered and accessed had changed significantly since the person was incarcerated. This included aspects such as being unfamiliar with the national medical insurance scheme which does not exist in prisons (Medicare), longer waiting times for services and rises in costs of living. A strong recurrent concept was the shift to digital forms of health information communication and healthcare delivery. This unfamiliarity was heightened for those released during the COVID-19 pandemic.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt's just the Medicare system itself. I really don't understand\u0026hellip; simply because I've never really experienced it\u0026hellip; they say \u0026ldquo;make a claim\u0026rdquo; but I don't know how to make a claim\u0026hellip; those things are still foreign to me \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eWith having to, you know, make sure that they had their [COVID-19] proof of vaccinations on [their phone] like all these things are just completely new. \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was often difficulty in adjusting to these new ways and having to learn new things as an older person. This was sometimes related to an older person\u0026rsquo;s diminished cognitive capacity, and sometimes a resistance to newer ways of doing things.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eGenerally if there's, if they've got cognitive decline, we don't want to introduce anything that's gonna cause them anymore sort of stress. So we will bring it back to the basics in that sense and use, you know, calendars and visual aids. \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003e1C \u0026ndash; Leaving prison care\u003c/h2\u003e \u003cp\u003eBy nature of incarceration, individuals have limited agency in gathering information about, understanding and managing their health needs whilst in prison. In a sense, there was no \u0026lsquo;need\u0026rsquo; to understand or appraise health information, as sources of information were limited, and the power to act upon any information, was highly restricted.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eA lot of people in custody don't know what medications they're on and what they're taking. They're just given seven days of medications. - Staff\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eTheir diet when they're in and putting on weight is a real problem, because the meals that we're providing are not really nutritionally sound. But they\u0026rsquo;ve got no choice really. - Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eUnfortunately, there was a lack of formal release preparation which often left individuals feeling ill-prepared for health management in the community. This was especially pertinent during COVID-19 where most aspects of healthcare were moved to digital forms.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eSo these are the things that you don't get told in jail. They don't say to you, when you get out, you're not going to be able to physically see your doctor. So you're going to have to do this and you're going to have to get your scripts emailed to you. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eResumption of care in the community was particularly challenging.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI find that with my GP [primary care physician], I've known them for a long time and so they continue to bulk bill me, but they're taking on new patients that they may not bulk bill. Now, if you're an offender and you've been in custody for three or four years and you come out, you no longer have a consistent GP, maybe you've moved areas umm, so nobody has that health history and nobody has that relationship with you over a period of time, it leaves them vulnerable. - Staff\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eWith the doctor which I used to see before I went to jail, I was removed from the books so she couldn't even put me back on there. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eGlobal Theme 2 \u0026ndash; \u0026ldquo;Equipped and Enabled\u0026rdquo;\u003c/h2\u003e \u003cp\u003eThe final four subthemes reflect the idea that people leaving prison must be equipped with specific skills to achieve key health literacy, and further enabled through accessibility and the provision formally enforced and support practices. Participants expressed a widespread lack of basic psychosocial, physical and financial resources that would enable a person to confidently and equitably achieve health literacy. Whilst the need for health literacy support was pervasive, a general lack of formal responsibility for healthcare and handover during the transition period resulted in poor health literacy prospects. Resultantly, this population are highly reliant on the informal assistance of others to achieve almost all aspects of health literacy, from accessing information through to engaging with healthcare providers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003e2A \u0026ndash; I can only do what I can\u003c/h2\u003e \u003cp\u003eParticipants reported that individuals were commonly limited from achieving health literacy at multiple levels. Cognitive capacity was often an issue for understanding and appraising health information, with memory complaints and mistrust or fear commonly mentioned.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eYeah sometimes I get confused, and I don't remember, I can't remember things I don't know where I have them and things like that. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eThere's a lot of acquired brain injuries from, you know, being hit in the head and car accidents and it, like I said, the alcohol, the drug use. - Staff\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eA lot of [the population] as well would be like a little bit cognitively impaired and you know \u0026hellip; a mistrust, I'd say in relation to it. - Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eTwo types of literacy were highlighted as particular enablers (or barriers) for this population: basic literacy from formal education (i.e., writing and reading), and digital literacy.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI'm a reasonably well-educated person. So it was easy for me to make those appointments. But I could imagine there will be lots that wouldn't be able to do that. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e[If] I've got health questions I'll make an appointment to see the doctor and then I'll ask her, but to get on a tablet like the internet and that, I'd throw it out the bloody window. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAt the systems level, the affordability and availability of health information, resources and services were a strong limiting feature in peoples\u0026rsquo; experiences of health literacy.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI did have an app on my phone for Optifast which I was doing for my weight loss until like they put their prices right up, - Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eA lot of them would never have phone credit, they\u0026rsquo;ll have a phone, but no credit. They can\u0026rsquo;t afford to recharge it. \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003e2B \u0026ndash; Help me help myself\u003c/h2\u003e \u003cp\u003eAn array of positive personal traits was mentioned to enable health literacy, such as insight, resilience, resourcefulness, having an open mind, and a willingness to learn. The overarching concepts tying these traits together were awareness and motivation for change, help-seeking, and a positive sense of self. First, participants reported a self-awareness and interest in their increased health needs that come with older age, which presented an important opportunity for health literacy. Staff interpreted this as becoming more mature or \u0026lsquo;settled\u0026rsquo; with age.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e[When I was younger] I just didn't have a need to go to the doctors. I was an A grade footballer right up to when I was 50. and just from 50 to now I've gone downhill, so it's amazing what five years can do yeah. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eMost men I work with, [at] a specific point, usually their late 40s, early 50s, they start to maybe that's when they mature and work out oh hang on \u0026ldquo;I need to do this\u0026rdquo; or \u0026ldquo;I need to do that\u0026rdquo; \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBeing able to ask for help or accepting help was also important but difficult to achieve because of a culture of toughness especially in men, and often associated with imprisonment.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt's just a matter of opening up and asking for help\u0026hellip; I've learned to ask. because if I need help, I'll ask. Because now, at my age, I'm 60 years of age, I've just got to learn to ask for help. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI think that the problem with the \u0026ldquo;tough guys\u0026rdquo; in inverted commas, is they've never asked for help. they've always been left to fend for themselves\u0026hellip; the guys that have done a long term in jail, they have a different code, a different mindset \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFinally, a positive sense of self (i.e., self-efficacy and self-esteem) was instrumental for achieving health literacy, by equipping individuals with the confidence and will to actively engage with people and systems. This self-concept often stemmed from their social experiences and personal achievements. Stigma and shame related to justice-involvement and low education were commonly mentioned here. Conversely, feeling respected by others or having experienced achievements such as education were encouraging.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e[People with] a long history of incarceration like they just feel like, they've never really been told you're really smart, you're really creative. You could do this. It's like this kind of cycle that, it really impacts their sense of self and their idea of about what can they can actually achieve. \u0026ndash; Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003e2C \u0026ndash; Others are key\u003c/h2\u003e \u003cp\u003e\u0026lsquo;Others\u0026rsquo; in this case mainly included caseworkers, family members and health professionals. Others facilitated health literacy through four main functions: sourcing and making sense of health information, ensuring access and affordability, encouraging or influencing health-seeking behaviours, and providing familiarity and stability during a tumultuous period.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eMany just don\u0026rsquo;t have a social network or know how to navigate any health requirements, and have poor diets, and things like that. So, you know, I think people in your vicinity who care about you can also kind of remind you about things and do just small incremental things and they all add up when you\u0026rsquo;re at that age. - Staff\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eWhen I got out, my daughter was helping me and getting me to all my appointments. She helped me a lot. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eIf I needed any help I\u0026rsquo;d have to ask my caseworker, I'll ask her to look [health information] up on the Google, whatever you call it. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn relation to healthcare providers in particular, people leaving prison sought relationships that offer familiarity, comfort and respect. Individuals preferred to build ongoing relationships with the same health providers, especially after disclosing their incarceration history and other life experiences with them. They also wanted to feel comfortable and respected in their interactions with them.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI don't want to leave my doctor because he knows my history. I've been with that doctor 14, 15 years. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eThe doctor [and I], we just clicked, and I think that's important you know you have to be able to get on within sort of a friendly basis? To be able to talk of personal issues or whatever, you know, but so you've got to have a bit of friendship and trust with them. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026hellip;You do get to know all the staff, the medical staff and staff at the front counter you know, and they treat me really well and I think that's good for me. That's good for my for my anxiety and that, because as you get older and are still going in and out of jail, and you think you know \u0026ldquo;what will people think of me?\u0026rdquo;, you know, you do worry about a lot of that sort of stuff. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003e2D \u0026ndash; Everybody\u0026rsquo;s problem, nobody\u0026rsquo;s job\u003c/h2\u003e \u003cp\u003eFinally, improving health literacy for older people leaving prison was everybody\u0026rsquo;s problem, but nobody\u0026rsquo;s job. That is, whilst health needs of this population were high, it was not a formal job requirement for any of the multiple organisations involved in a person\u0026rsquo;s release journey. As such, the support people did receive was mostly informal, and was often offered as a form of \u0026lsquo;above and beyonding\u0026rsquo; by staff in their already resource-limited jobs.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI have a good parole officer so and he knows that I need to do all this and he's very supportive you know go along and get yourself tested mate you know like well, like I've had parole officers before they don't really take you know like a punitive role with you it's all business and nothing else sort of thing. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e[Parole staff] just don't have time and don\u0026rsquo;t allocate resources to people who are low risk and fairly high functioning either. So it's the same everywhere. No one has any money. Nobody has any time. - Staff\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition to it not being anyone\u0026rsquo;s job, there was also a lack of collaboration between organisations. One repeatedly discussed barrier was the inability to access one\u0026rsquo;s medical records from their imprisonment period, which meant individuals and their health providers were left without important information about their health.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIf he was in custody for a number of years, then [prison medical services] having his medical history and all of that, it is really difficult to pass those details on post release to his GP or any other sort of medical professionals. Yeah even prison officers don't get access. - Staff\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI rang up the jail to get by medical records and they said \u0026ldquo;Oh we haven't got them, we sent it up to [prison medical services], so I rang them up and they wanted $35 for me to get my own records and I don't have money for that. Then my doctor faxed up a request that I signed the paperwork for.. and he still hasn't got them. That was [months ago]. \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis meant experiences were inconsistent across individuals, but also across instances of release in the same individual.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThere\u0026rsquo;s a lot more issues of getting out of my age this time but I think I've had more support this time than I've had before too. It\u0026rsquo;s always a bit different every time \u0026ndash; Lived experience\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec27\" class=\"Section2\"\u003e \u003ch2\u003eKey findings\u003c/h2\u003e \u003cp\u003eTo the best of our knowledge, this study is the first to examine experiences of health literacy in people leaving incarceration in later life. The seven themes were brought together into two global themes which spoke to a breadth of person and systems-level challenges and enablers that were pertinent to health literacy experiences for this population, during this time. The first global theme highlights the need to be mindful of the immense physical, systemic, cultural and psychosocial changes that the person is experiencing during the release period. The general instability of this time and ill-preparedness for transition between two very different health systems (prison vs community) often precludes health literacy. The second global theme highlights a range of physical, financial, psychological and social resources that are needed for individuals to achieve health literacy. These needs tended to stem from old age (e.g., cognitive decline), social determinants of health that align with justice involvement (e.g., low literacy) and disconnection from community as a result of imprisonment (e.g., social supports).\u003c/p\u003e \u003cp\u003eThere were more challenges than strengths used to describe the experience of health literacy for this population. This is in line with existing quantitative studies that demonstrate poor health literacy in justice-involved populations (Gill et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Hadden et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Mehay et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Welvers et al., \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). At an organisational level, the findings align with what is already known about gaps in pre-release planning, integrated care and care continuity for people leaving imprisonment (Forsyth et al., \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; Hagos et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Hwang et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2024\u003c/span\u003e), the implications of which will be discussed further. The findings also reflect what is known both qualitatively and quantitatively about a range of care challenges and unmet care needs in older people both during and after imprisonment (Barry et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Hagos et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Jackson et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Jimenez et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; B. A. Williams et al., \u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e2010\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003eConceptual implications\u003c/h2\u003e \u003cp\u003eThe findings reveal several novel conceptual insights about health literacy for this population.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec29\" class=\"Section2\"\u003e \u003ch2\u003eIntersectionality\u003c/h2\u003e \u003cp\u003eFirst, intersectionality (Atewologun, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2018\u003c/span\u003e) is a key underlying driver of the health literacy experience. That is, older people leaving prison are often the subject of intersecting difficulties across their financial, social, psychological and health-related circumstances and life experiences. The social determinants of ill-health they are commonly subject to, compounded by their multiple and unmet health needs in older age, further interact with the marginalisation and exclusion they experience over lengthy and/or often repeated cycles of incarceration, to finally result in severely diminished personal and social resources needed to negotiate health and navigate health systems after release. Moreover, a perceived lack of focus on health literacy by prisons at an organisational level contributes to these intersecting challenges. As such, older people leaving prison are a high needs group who need additional attention to achieve equitable levels of health literacy compared to those without experiences of incarceration and compared to their younger peers.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eAgency and de-institutionalisation\u003c/h3\u003e\n\u003cp\u003eHealth literacy is achieved through a sense of control and agency, which is typically restricted in prison settings. Upon release, individuals are expected to regain and exercise this control over their lives, including management of their health. This is understandably difficult and explains the emergence of the theme of \u0026lsquo;change\u0026rsquo;. In prison, individuals have minimal agency or independence in their daily activities, including healthcare management. Access to information is also highly regulated (e.g., the internet is generally unavailable) and prisoners are generally not expected to interpret, evaluate, or act upon health information. Consequently, they often face difficulties in managing their lives upon release and have a high reliance on the support of other people. Health literacy is thus challenging as it entails a practicing of agency, through a process of de-institutionalisation, after years of restriction and routine. This can be especially challenging for older individuals who may have spent extended or multiple periods of time in incarceration or institutionalisation in other forms.\u003c/p\u003e \u003cdiv id=\"Sec31\" class=\"Section2\"\u003e \u003ch2\u003eSense of self \u0026ndash; self-efficacy and stigma\u003c/h2\u003e \u003cp\u003eAn individual's sense of self significantly influences their capacity and motivation for health literacy following release from prison. Aligned with the concept of de-institutionalisation, there aren\u0026rsquo;t often opportunities for one\u0026rsquo;s sense of self to grow or be affirmed during imprisonment. Moreover, sense of self can understandably be affected by the lack of agency inherent to prisons, and factors that go hand in hand with justice system involvement, such as low educational attainment, and cognitive disability. This reflects existing literature that self-efficacy is the most consistently reported facilitator of health literacy in the general population (Cudjoe et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), and is closely linked to health seeking behaviours in older people in prison (Loeb et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2011\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAnother pertinent aspect of self-concept for this population, which also affects health literacy, was stigma. Stigma, whilst not usually considered in general health literacy frameworks, is understandably a central feature of daily living for people who have experienced incarceration (Feingold, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). It is a consistent finding that those who have experienced longer periods of incarceration are subject to higher rates of stigmatisation (Feingold, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Feelings and experiences of stigma after release, combined with a lack of self-efficacy, as well as prison culture which discourages help-seeking, further exacerbates a general lack of confidence in this population. As a result, individuals may be reluctant to engage with health resources or professionals in the community, especially if these are new or unfamiliar to them. Accordingly, individuals in this study who demonstrated strengths or positivity in health literacy typically reported being in social environments characterised by higher levels of familiarity, trust and respect.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec32\" class=\"Section2\"\u003e \u003ch2\u003eMotivation for change\u003c/h2\u003e \u003cp\u003eOn a positive note, older age brought about a sense of maturity, and an associated motivation to manage their changing health needs and to reintegrate well. This makes it an opportune time for health literacy intervention, with potential protective effects on repeat offending. Developmental/life-course criminological theories suggest that people \u0026lsquo;shed\u0026rsquo; their criminal identities with age, resulting in a lower tendency for crime in later life (McGee \u0026amp; Farrington, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Moreover, there is growing recognition of physical and mental health as key facilitators of post-release re-entry and desistance from crime (Link et al., \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Integrating health literacy support during this period of change could therefore enhance the likelihood of successful reintegration and reduce the risk of recidivism.\u003c/p\u003e \u003cdiv id=\"Sec33\" class=\"Section3\"\u003e \u003ch2\u003ePractical implications\u003c/h2\u003e \u003cp\u003eBuilding on these findings, there are specific considerations for developing and delivering health literacy interventions for this population. The post-release period is generally chaotic and not ideal for acquiring new skills. Instead, a focus on health literacy skills in preparation for release, should be delivered during a person\u0026rsquo;s imprisonment. Practices must be consistent and universally applied.\u003c/p\u003e \u003cp\u003eThere is a clear need for improved organisational health literacy responsiveness, especially by prison health services and correctional facilities. The current findings report no notable strengths, with clear challenges noted across all seven domains of the org-HLR. It is important to note here that there is an explicit emphasis on health literacy in the New South Wales Healthy Prisons Framework, where the current study was based. As the initiatives are still in their infancy, it is likely the effects have not yet been felt by participants. Judging by the overall scarcity of research on health literacy in this population, it is unlikely that prisons in other jurisdictions or countries have had a strong focus on health literacy so far. A focus on health literacy in correctional practice is strongly advised. Once implemented, evaluation of such initiatives against both individual and organisational-level frameworks, such as the HLQ and Org-HLR, would be valuable for building evidence in this area.\u003c/p\u003e \u003cp\u003eFrom these findings, prison health services\u0026rsquo; responsibilities should include not only managing inmates' health conditions during incarceration but also facilitating their transition to community care via education on how to manage their conditions in the community and ensuring access to their treatment records. On the other hand, custodial staff should prioritize release planning that emphasises stability during the post-release period and increasing familiarity with the post-release environment. Efforts to maintain social connections in the community are also highly valuable, as this population remain highly reliant on the help of others. Community-based health providers will also benefit from efforts to reduce stigma and ensure continuity of care from pre- to post-incarceration. This will be a challenging task, but will create strong positive impact not only for health literacy but for community reintegration and desistance from further crime overall.\u003c/p\u003e \u003cp\u003eImportantly, improving collaboration with community-based healthcare providers is essential to ensure effective care handover and prevent service gaps. Developing integrated care models and focusing on care continuity alongside health literacy initiatives can provide a valuable foundation for these efforts. For example, multidisciplinary care meetings prior to release, that are followed up by targeted assessments in the community by a designated local primary care doctor, would work well to offset the turbulence of the post-release period.\u003c/p\u003e \u003cp\u003eThe findings identify some unique targets for health literacy improvement in this population. These include basic literacy, time management and planning, daily living skills such as use of transportation and cooking, and digital and eHealth literacy, which are strong emerging determinants of health for older people in the community (Arias L\u0026oacute;pez et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). To be most effective, these should be framed towards \u0026lsquo;de-institutionalisation\u0026rsquo; of the individual, i.e. growing independence and familiarity with the outside world, and exercising more complex forms of health information appraisal and application.\u003c/p\u003e \u003cp\u003eIn essence this population are currently passive health care and information \u0026lsquo;receivers\u0026rsquo;, i.e., they are largely at the receiving end of information and care and lack the confidence or resources to take charge of or improve their health literacy. In general health literacy terms, the unique life experiences and incarceration environment means their ability to \u0026lsquo;access\u0026rsquo; and \u0026lsquo;understand\u0026rsquo; health information is already restricted (Sorensen et al., \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e2012\u003c/span\u003e). Moreover, \u0026lsquo;appraisal\u0026rsquo; and \u0026lsquo;application\u0026rsquo; of this health information is hardly ever required or allowed during imprisonment, so it is scarcely attained or exercised. However, these skills become necessary to live healthily in the community. Thus, health literacy interventions must be focused on making people independently health literate - health literacy \u0026lsquo;doers\u0026rsquo;.\u003c/p\u003e \u003cp\u003eFollowing from this, positive self-concept and self-efficacy, will be important to consider in developing interventions as well as management of perceived, anticipated and internalised stigma. These can act as key psychological enablers, to take on and enact health literate behaviours.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec34\" class=\"Section3\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003eThis study contributes to a lack of literature regarding health literacy of previously incarcerated populations discussed in the introduction, and to the notable lack of health literacy studies involving people with low general literacy and those from disadvantaged backgrounds who may have a high health burden (Cudjoe et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). It also considers multiple relevant perspectives to piece together a complementary and holistic picture of health literacy for this population during this time.\u003c/p\u003e \u003cp\u003eA limiting factor in this study was its focus on individuals and stakeholders from one state (New South Wales) in Australia. Despite this, the issues uncovered align strongly with existing studies from other developed countries, as the socioeconomic, cultural and public health issues facing justice-involved populations are generally consistent. Intervention development should be guided by co-design and data that is specific to each jurisdictional context.\u003c/p\u003e \u003cp\u003eIt is important to note that these findings are less a reflection of health literacy \u0026lsquo;performance\u0026rsquo; and more an understanding of how health literacy is experienced and negotiated in this population. The measurement of health literacy using quantitative tools such as the HLQ would provide such insight and provide more tangible targets for intervention development. Also, this preliminary study focused on conceptual understandings of health literacy. The resultant concepts can be further developed to build causal, explanatory models of health literacy for this population. These would improve the effectiveness of developed solutions.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eOlder people leaving imprisonment are the subject of complex and overlapping life circumstances, limited resources and support for health literacy. These individuals are mostly passive health care and information \u0026lsquo;receivers\u0026rsquo;, who must be equipped and enabled to become more active health literacy \u0026lsquo;doers\u0026rsquo;. This can be achieved through interventions that prepare the person better for life in community, and improve positive self-concept. Health and custodial organisations also have an important role to play, with opportunities for improvement apparent across areas such as communication, focused health literacy policies, and collaboration with community partners.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eEthics approval and consent to participate\u003c/h2\u003e \u003cp\u003eThis study was granted ethical approval from: The University of New South Wales Human Research Ethics Committee [HC220042], Corrective Services NSW Ethics Committee [D2022/0294030], and the Justice Health and Forensic Mental Health Network of NSW Ethics Committee [G477/22]. Consent to participate in this research was obtained verbally for some participants and via written form for other participants. Verbal consent was obtained prior to interviews using a verbal consent script and audio recording, as approved via ethical review. Details regarding the consent (date, time, verbal nature, participant\u0026rsquo;s name) were recorded in a spreadsheet, and the consent itself was audio-recorded. These records were hosted on password-protected folders on the university\u0026rsquo;s shared drive. Written consent was obtained prior to the study via an online form.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis study was funded by the Australian Association of Gerontology 2021 Hal Kendig Research Development Program Grant.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eYH and SE designed the study, and BHR provided additional intellectual guidance. All authors except AKH were involved in the funding proposal. YH, AKH and SH contributed to gaining ethics approval, and recruitment for the study. AKH and SE collected data. YH and SE analysed the data. YH wrote the draft manuscript. All authors reviewed and approved the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThe authors would like to acknowledge the participants of the study for their time, and especially the support of the NSW Community Restorative Centre in this work.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eArias L\u0026oacute;pez, M. P., Ong, B. A., Frigola, B., Fern\u0026aacute;ndez, X., Hicklent, A. L., Obeles, R. S., Rocimo, A. J. T., A. M., \u0026amp; Celi, L. A. (2023). Digital literacy as a new determinant of health: A scoping review. \u003cem\u003ePLOS Digital Health\u003c/em\u003e, \u003cem\u003e2\u003c/em\u003e(10), e0000279. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1371/journal.pdig.0000279\u003c/span\u003e\u003cspan address=\"10.1371/journal.pdig.0000279\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eArmes, J., Visser, R., L\u0026uuml;chtenborg, M., Huynh, J., Wheatcroft, S., Barber, A. E., Plugge, E., Taylor, R. M., Hunter, M., R., \u0026amp; Davies, A. (2024). E. \u003cem\u003eCancer in prison: barriers and enablers to diagnosis and treatment\u003c/em\u003e. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003c/span\u003e\u003cspan address=\"http://www.thelancet.com\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAtewologun, D. (2018). Intersectionality Theory and Practice. 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John Wiley and Sons Inc. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1111/jgs.17454\u003c/span\u003e\u003cspan address=\"10.1111/jgs.17454\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWithall, A., Mantell, R., Hwang, Y. I., Jane), Ginnivan, N., \u0026amp; Baidawi, S. (2022). \u003cem\u003eBackground Paper: Issues facing older people leaving prison\u003c/em\u003e. Issue November. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://aag.asn.au/libraryviewer?ResourceID=74\u003c/span\u003e\u003cspan address=\"https://aag.asn.au/libraryviewer?ResourceID=74\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWorld Health Organization. (n.d.). \u003cem\u003eHealth Literacy\u003c/em\u003e. Retrieved September 19 (2024). from \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.who.int/teams/health-promotion/enhanced-wellbeing/ninth-global-conference/health-literacy\u003c/span\u003e\u003cspan address=\"https://www.who.int/teams/health-promotion/enhanced-wellbeing/ninth-global-conference/health-literacy\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWorld Health Organization (2022). \u003cem\u003eHealth literacy development for the prevention and control of noncommunicable diseases. Case studies from WHO National Health Literacy Demonstration Projects Volume 4\u003c/em\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"health literacy, release, reintegration, health equity, public health, prison policy, qualitative research, lived experience, older adults, aging","lastPublishedDoi":"10.21203/rs.3.rs-5119702/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5119702/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThis qualitative study investigated experiences and understandings of health literacy for those released from prison in later life. The global rise in older incarcerated individuals\u0026mdash;defined as those aged 50 and above\u0026mdash;poses significant public health and health equity challenges. With up to one in four prisoners being categorized as \"older,\" their complex health needs often exceed those of younger inmates and the general community. An important but under-investigated challenge for this older population is navigating health care systems and self-management after release. Research evidence, albeit limited, has consistently identified health literacy deficits in this this population, complicating their health outcomes and reintegration more generally. This study fills a gap in the experience of health literacy for older people leaving prison, thus contributing to conceptual understandings and guiding targeted intervention development for this marginalised population.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFifteen people with lived experience of release from prison in older age (mean age = ) and thirteen staff or stakeholders with relevant professional experience from Australia participated in workshops and interviews exploring health literacy during the post-release period. An abductive thematic analysis was applied to the data, guided by the concept of health literacy and organisational health literacy responsiveness. The analysis produced two global themes (\u0026ldquo;Change\u0026rdquo; and \u0026ldquo;Equipped and Enabled\u0026rdquo;) and seven subthemes (\u0026ldquo;A demanding time of change\u0026rdquo;, \u0026ldquo;Braving a new world\u0026rdquo;, \u0026ldquo;Leaving prison care\u0026rdquo;, \u0026ldquo;I can only do what I can\u0026rdquo;, \u0026ldquo;Help me help myself\u0026rdquo;, \u0026ldquo;Others are key\u0026rdquo;, \u0026ldquo;Everybody\u0026rsquo;s problem, nobody\u0026rsquo;s job\u0026rdquo;). Together, these themes indicated these individuals are the subject of complex and overlapping life circumstances, with limited resources and support currently available for health literacy both during and after release.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThis population are mostly passive health care and information \u0026lsquo;receivers\u0026rsquo; as a result of their imprisonment, who must be equipped and enabled to become more active health literacy \u0026lsquo;doers\u0026rsquo;. This can be achieved through interventions that prepare the person better for life in community, and improve positive self-concept. Health and custodial organisations have an important role to play, with opportunities for improvement apparent across areas such as communication, focused health literacy policies, and collaboration with community partners.\u003c/p\u003e","manuscriptTitle":" “Equipping and Enabling” health literacy during a “Time of Change”: understanding health literacy and organisational health literacy responsiveness for people leaving prison in later life ","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-06 09:43:54","doi":"10.21203/rs.3.rs-5119702/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"efd2e460-08a4-452b-8cba-616d3ac1128b","owner":[],"postedDate":"November 6th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-01-06T14:08:42+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-06 09:43:54","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5119702","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5119702","identity":"rs-5119702","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}