Sarity Dodson

The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform.

BackgroundHealth literacy is a multi-dimensional concept comprising a range of cognitive, affective, social, and personal skills and attributes. This paper describes the research and development protocol for a large communities-based collaborative project in Victoria, Australia that aims to identify and respond to health literacy issues for people with chronic conditions. The project, called Ophelia (OPtimising HEalth LIterAcy) Victoria, is a partnership between two universities, eight service organisations and the Victorian Government. Based on the identified issues, it will develop and pilot health literacy interventions across eight disparate health services to inform the creation of a health literacy response framework to improve health outcomes and reduce health inequalities.Methods/DesignThe protocol draws on many inputs including the experience of the partners in previous co-creation and roll-out of large-scale health-promotion initiatives. Three key conceptual models/discourses inform the protocol: intervention mapping; quality improvement collaboratives, and realist synthesis. The protocol is outcomes-oriented and focuses on two key questions: ‘What are the health literacy strengths and weaknesses of clients of participating sites?’, and ‘How do sites interpret and respond to these in order to achieve positive health and equity outcomes for their clients?’. The process has six steps in three main phases. The first phase is a needs assessment that uses the Health Literacy Questionnaire (HLQ), a multi-dimensional measure of health literacy, to identify common health literacy needs among clients. The second phase involves front-line staff and management within each service organisation in co-creating intervention plans to strategically respond to the identified local needs. The third phase will trial the interventions within each site to determine if the site can improve identified limitations to service access and/or health outcomes.DiscussionThere have been few attempts to assist agencies to identify, and respond, in a planned way, to the varied health literacy needs of their clients. This project will assess the potential for targeted, locally-developed health literacy interventions to improve access, equity and outcomes.

Systematic development and implementation of interventions to OPtimise Health Literacy and Access (Ophelia)

BackgroundThe need for healthcare strengthening to enhance equity is critical, requiring systematic approaches that focus on those experiencing lesser access and outcomes. This project developed and tested the Ophelia (OPtimising HEalth LIteracy and Access) approach for co-design of interventions to improve health literacy and equity of access. Eight principles guided this development: Outcomes focused; Equity driven, Needs diagnosis, Co-design, Driven by local wisdom, Sustainable, Responsive and Systematically applied. We report the application of the Ophelia process where proof-of-concept was defined as successful application of the principles.MethodsNine sites were briefed on the aims of the project around health literacy, co-design and quality improvement. The sites were rural/metropolitan, small/large hospitals, community health centres or municipalities. Each site identified their own priorities for improvement; collected health literacy data using the Health Literacy Questionnaire (HLQ) within the identified priority groups; engaged staff in co-design workshops to generate ideas for improvement; developed program-logic models; and implemented their projects using Plan-Do-Study-Act (PDSA) cycles. Evaluation included assessment of impacts on organisations, practitioners and service users, and whether the principles were applied.ResultsSites undertook co-design workshops involving discussion of service user needs informed by HLQ (n = 813) and interview data. Sites generated between 21 and 78 intervention ideas and then planned their selected interventions through program-logic models. Sites successfully implemented interventions and refined them progressively with PDSA cycles. Interventions generally involved one of four pathways: development of clinician skills and resources for health literacy, engagement of community volunteers to disseminate health promotion messages, direct impact on consumers’ health literacy, and redesign of existing services. Evidence of application of the principles was found in all sites.ConclusionsThe Ophelia approach guided identification of health literacy issues at each participating site and the development and implementation of locally appropriate solutions. The eight principles provided a framework that allowed flexible application of the Ophelia approach and generation of a diverse set of interventions. Changes were observed at organisational, staff, and community member levels. The Ophelia approach can be used to generate health service improvements that enhance health outcomes and address inequity of access to healthcare.

Assessing the capacity of the health services research community in Australia and New Zealand

BackgroundIn order to profile the health services research community in Australia and New Zealand and describe its capacity, a web-based survey was administered to members of the Health Services Research Association of Australia and New Zealand (HSRAANZ) and delegates of the HSRAANZs Third Health Services Research and Policy Conference.ResultsResponses were received from 191 individuals (68%). The responses of the 165 (86%) who conducted or managed health services research indicated that the health services research community in Australia and New Zealand is characterised by highly qualified professionals who have come to health services research via a range of academic and professional routes (including clinical backgrounds), the majority of whom are women aged between 35 and 54 who have mid- to senior- level appointments. They are primarily employed in universities and, to a lesser extent, government departments and health services. Although most are employed in full time positions, many are only able to devote part of their time to health services research, often juggling this with other professional roles. They rely heavily on external funding, as only half have core funding from their employing institution and around one third have employment contracts of one year or less. Many view issues around building the capacity of the health services research community and addressing funding deficits as crucial if health services research is to be translated into policy and practice. Despite the difficulties they face, most are positive about the support and advice available from peers in their work settings, and many are actively contributing to knowledge through academic and other written outputs.ConclusionIf health services research is to achieve its potential in Australia and New Zealand, policy-makers and funders must take the concerns of the health services research community seriously, foster its development, and contribute to maximising its capacity through a sustainable approach to funding. There is a clear need for a strategic approach, where the health services research community collaborates with competitive granting bodies and government departments to define and fund a research agenda that balances priority-driven and investigator-driven research and which provides support for training and career development.

Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing

BackgroundHealth literacy refers to an individual’s ability to engage with health information and services. Cancer caregivers play a vital role in the care of people with cancer, and their capacity to find, understand, appraise and use health information and services influences how effectively they are able to undertake this role. The aim of this study was to develop an instrument to measure health literacy of cancer caregivers.MethodContent areas for the new instrument were identified from a conceptual model of cancer caregiver health literacy. Item content was guided by statements provided by key stakeholders during consultation activities and selected to be representative across the range of cancer caregiver experiences. Content validity of items was assessed through expert review (n = 7) and cognitive interviews with caregivers (n = 16).ResultsAn initial pool of 82 items was generated across 10 domains. Two categories of response options were developed for these items: agreement with statements, and difficulty undertaking presented tasks. Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78). Cognitive interviews with caregivers suggested that all except three items were well understood.ConclusionA resultant 88 item questionnaire was developed to assess cancer caregiver health literacy. Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure. The new measure has the potential to inform the development and evaluation of interventions and the improvement of health service delivery to cancer caregivers.

Multifaceted Assessment of Health Literacy in People Receiving Dialysis: Associations With Psychological Stress and Quality of Life

Health literacy (HL) refers to a person’s ability to engage effectively with health information and services. We aimed to describe the HL of people receiving dialysis and the factors associated with it. A cross-sectional design was used, with demographic and clinical data as predictors. Participants were people receiving dialysis at a metropolitan health service in Melbourne, Australia. Health consumers with conditions not requiring dialysis were included for comparison. The Health Literacy Questionnaire, Kidney Disease Quality of Life–36, and Depression Anxiety Stress Scales–21 were administered. Participants (M age = 68.2 ± 13.7 years; n = 57 males) were 76 people receiving hemodialysis within a dialysis unit, 16 people receiving home peritoneal dialysis, and 8 people receiving home hemodialysis. Participants scored higher on the HL domains social support for health and engagement with health care providers but lower on active management of health than the comparison group (n = 813). Hierarchical cluster analysis revealed 2 clusters within the dialysis sample representing higher (n = 43) and lower (n = 57) profiles of HL. The higher HL cluster reported better quality of life across 4 of 5 domains of the Kidney Disease Quality of Life–36, fewer symptoms of depression and anxiety, and higher serum albumin (mean difference = 2.06 g/L, p = .04) than the lower HL cluster. These results show that people receiving dialysis feel better supported and informed about their health than other health consumers but are less active in managing it. Higher HL is associated with better mental health and quality of life. Identifying HL characteristics may help direct specific interventions to improve patient education and support.

Development and testing of a framework for analysing health literacy in public policy documents

Health literacy is a driver of community empowerment and a key determinant of health and equity. The World Health Organisation has established a strong global mandate for addressing health literacy through public policy action, by positioning it as one of three key pillars for achieving sustainable development and health equity in the Shanghai Declaration on Health Promotion. Policy document analysis is a useful way of determining the strengths and limitations of past and current policies, as well as the likely success of their implementation and impact on health outcomes. In this study, we developed a framework for analysing policy documents to assess the extent to which they prioritise and operationalise an emergent public health issue, in this case health literacy. Specifically, the framework enables a systematic exploration of (i) the stated policy goals and strategic objectives; (ii) the stated policy actions; and (iii) whether there is an intention to resource and monitor the stated policy activities. We tested the utility of the framework by applying it to a set of public policies in the Australian context. The framework presented in this study may be a useful tool for systematically analysing policy documents to reveal their strengths and limitations, and the extent to which they prioritise and operationalise health literacy.

OP0199-HPR Chronic disease self-management (CDSM) for people with musculoskeletal and mental health problems: Steppingup - a new flexible web-based system to serve patients, clinicians and organisations

Background Musculoskeletal and concurrent mental health problems are common and complex problems for practitioners across the care continuum. The internet and web-based solutions are increasingly being seen as a viable way to deliver effective care, particularly for patient education programs. Most CDSM programs have not considered best practice in educational theory, flexible learning systems, patient-centred care, evidence-based health psychology practice, and how these should be integrated into flexible system to serve both the patient, practitioner and organization. To fill this gap “Stepping Up - when arthritis or pain gets you down” was developed. Objectives 1. Develop and test a web-based CDSM support system sufficiently flexible to optimally support patients with a wide range of musculoskeletal problems, concurrent mental health problems (ie anxiety, depression) and challenged by physical and socioeconomic isolation 2. Build a CDSM system that emulates how experienced practitioners work with clients - including a wide range of flexible modules and decision support that ensures practitioners are well supported to deliver best-practice in chronic disease self-manage support Methods 40 adults (77% woman) with a range of musculoskeletal conditions took part. Average age was 48 (range: 22 to 85). Many participants reported a mental health diagnosis (33%), and 49% of participants reported multiple chronic conditions. Participants took part in an initial phone interview, and then worked independently through a personalised set of modules over several weeks (4 to 10, depending on their needs and lifestyle). Participants accessed weekly email support as part of the intervention, and took part in a phone review upon conclusion. Outcomes measured included clinician and self-reported improvements in symptoms and health behaviours, and impact on standardised pre-post questionnaires such as the widely used Health Education Impact Questionnaire (heiQ). Results A large number (N=39) of patient-centred modules were developed to allowed extensive tailoring of programs for individual patients. Significant improvements were observed in the Emotional Distress, Skill and Technique Acquisition and Social Integration and Support scales of the heiQ (effect size: -0.55; 0.77; 0.43 respectively, P<0.05 for all). Improvement in Health-related Quality of Life was very large: 0.11 utility units (P<0.01; minimally important difference >0.06 units). Within formal structured interviewes, >50% of participants gave comments of high praise about the program at follow-up, and over 90% listed specific changes in behaviour that they directly attributed to the program. The most frequent response to questioning about helpful aspects of the program was that it was the program as a whole and the way it fitted together. Conclusions The Stepping Up intervention was found to be highly acceptable to patients and clinicins. It can achieve significant improvements in emotional distress, behaviours, skills, and social support in clients. Implementation is progressing in Australia and UK. Disclosure of Interest None Declared

Barriers to Breast Cancer Screening among Diverse Cultural Groups in Melbourne, Australia

This study explored the association between health literacy, barriers to breast cancer screening, and breast screening participation for women from culturally and linguistically diverse (CALD) backgrounds. English-, Arabic- and Italian-speaking women (n = 317) between the ages of 50 to 74 in North West Melbourne, Australia were recruited to complete a survey exploring health literacy, barriers to breast cancer screening, and self-reported screening participation. A total of 219 women (69%) reported having a breast screen within the past two years. Results revealed that health literacy was not associated with screening participation. Instead, emotional barriers were a significant factor in the self-reported uptake of screening. Three health literacy domains were related to lower emotional breast screening barriers, feeling understood and supported by healthcare providers, social support for health and understanding health information well enough to know what to do. Compared with English- and Italian-speaking women, Arabic-speaking women reported more emotional barriers to screening and greater challenges in understanding health information well enough to know what to do. Interventions that can improve breast screening participation rates should aim to reduce emotional barriers to breast screening, particularly for Arabic-speaking women.

Conceptualisation and development of the Conversational Health Literacy Assessment Tool (CHAT)

BackgroundThe aim of this study was to develop a tool to support health workers’ ability to identify patients’ multidimensional health literacy strengths and challenges. The tool was intended to be suitable for administration in healthcare settings where health workers must identify health literacy priorities as the basis for person-centred care.MethodsDevelopment was based on a qualitative co-design process that used the Health Literacy Questionnaire (HLQ) as a framework to generate questions. Health workers were recruited to participate in an online consultation, a workshop, and two rounds of pilot testing.ResultsParticipating health workers identified and refined ten questions that target five areas of assessment: supportive professional relationships, supportive personal relationships, health information access and comprehension, current health behaviours, and health promotion barriers and support.ConclusionsPreliminary evidence suggests that application of the Conversational Health Literacy Assessment Tool (CHAT) can support health workers to better understand the health literacy challenges and supportive resources of their patients. As an integrated clinical process, the CHAT can supplement existing intake and assessment procedures across healthcare settings to give insight into patients’ circumstances so that decisions about care can be tailored to be more appropriate and effective.

Development of the Organisational Health Literacy Responsiveness (Org-HLR) self-assessment tool and process

BackgroundThe World Health Organization describes health literacy as a critical determinant of health and driver of citizen empowerment and health equity. Several studies have shown that health literacy is associated with a range of socioeconomic factors including educational attainment, financial position and ethnicity. The complexity of the health system influences how well a person is able to engage with information and services. Health organisations can empower the populations they serve and address inequity by ensuring they are health literacy responsive. The aim of this study was to develop the Organisational Health Literacy Responsiveness self-assessment tool (Org-HLR Tool), and an assessment process to support organisations with application of the tool.MethodsA co-design workshop with health and social service professionals was undertaken to inform the structure of the tool and assessment process. Participants critiqued existing self-assessment tools and discussed the likely utility of the data they generate. A review of widely used organisational performance assessment tools informed the structure and self-assessment process. The Organisational Health Literacy Responsiveness (Org-HLR) Framework (with seven domains/24 sub-domains) provided the structure for the assessment dimensions of the tool. The performance indicators were drawn from raw data collected during development of the Org-HLR Framework.ResultsTwenty-two professionals participated in the workshop. Based on the feedback provided and a review of existing tools, a multi-stage, group-based assessment process for implementing the Org-HLR Tool was developed. The assessment process was divided into three parts; i) reflection; ii) self-rating; and iii) priority setting, each supported by a corresponding tool. The self-rating tool, consistent with the Org-HLR Framework, was divided into: External policy and funding environment; Leadership and culture; Systems, processes and policies; Access to services and programs; Community engagement and partnerships; Communication practices and standards; Workforce. Each of these had 1 to 5 sub-dimensions (24 in total), and 135 performance indicators.ConclusionsThe Org-HLR Tool and assessment process were developed to address a gap in available tools to support organisations to assess their health literacy responsiveness, and prioritise and plan their quality improvement activities. The tool is currently in the field for further utility and acceptability testing.