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Background: A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. Objective: To evaluate the Dementia Health Literacy Project using a realist evaluation framework. Setting and participants: The setting was the region of the north coast of New South Wales. Eight people diagnosed with dementia and their carers, 13 members of social groups of older people in the local area, and 22 local GPs and other health‐care and service providers participated in this study. Results: Two context‐mechanism‐outcome configurations were identified: (a) co‐design workshops where the stakeholders' opinions were equally valued (context) led service users to feel listened to and prompted them to provide feedback (mechanism) to develop a practical resource that they would use (outcome); and (b) use of health professionals to distribute the resources (context) that they consider useful and valuable (mechanism) resulted in the target audience receiving the resources (outcome). Discussion and conclusions: The Dementia Health Literacy Project produced a Dementia Support Kit that is likely to provide locally relevant and useful information for people with dementia and their carers. The results highlight the value of the co‐design approach in producing and disseminating dementia health literacy resources. Further evaluation is required to confirm the impact of the Kit over time on service users' behaviour and consequently on their health outcomes. [ABSTRACT FROM AUTHOR]

Background: Women in prison have complex medical needs and poorer health status than the general population. Culturally and linguistically diverse (CALD) women in prison, particularly those with limited English proficiency (LEP), have distinct needs and risk additional isolation, discrimination and marginalization when they are in prison. Objective: We sought to examine how cultural and linguistic diversity, particularly LEP, affects the health‐care experiences of women in prison. Design, Setting and Participants: We conducted focus groups and semi‐structured qualitative interviews with CALD women and frontline nursing staff in the three female Correctional Centres in New South Wales, Australia. Results: Participants comprised 30 women in prison and nine nurses. Both women and staff reported communication difficulties as a significant and additional barrier to accessing and receiving health care. For some women with LEP, barriers to care were perceived as discrimination. Fellow prisoners were often utilized as support persons and informal interpreters ("peer interpreters") in place of formally trained interpreters. While peer interpreters were perceived as useful, potential challenges to their use were vulnerability to coercion, loss of confidentiality, untrained health advice and errors of interpretation. Conclusion: The persistent use of peer interpreters in prison is complicated by the lack of clearly defined roles, which can include informal peer support roles and lay health advice. These are highly complex roles for which they are unlikely to be adequately trained or supported, despite perceived benefits to their use. Improved understanding and facilitation of health‐related communication could enhance equity of access for CALD women in prison. [ABSTRACT FROM AUTHOR]

Background Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher-order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making ( SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course. Objective To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives. Design and participants Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix-based method of thematic analysis. Results Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take-home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts. Discussion and conclusions SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need. [ABSTRACT FROM AUTHOR]

Background: Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS. Objective: The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care? Setting and participants: Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically. Results: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’. Discussion: Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients' cyclic decision‐making patterns and facilitating carer inclusion in decision processes. Conclusions: The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment. [ABSTRACT FROM AUTHOR]

Background: This research examined whether young adults with Type 1 diabetes engage with the multidisciplinary consultation process and if not, then why. Methods: We designed a web‐based self‐reported survey, available online from February to May 2011, for Australian adults 18–35 years with Type 1 diabetes. Respondents were asked about which clinicians they consulted to assist with self‐management. To expand on the results of the survey, we interviewed 33 respondents. Results: Survey: Respondents (n = 150) consulted with the following clinicians: endocrinologist and diabetes educators: 23.3%; endocrinologist only: 18.0%; endocrinologist, diabetes educators and dieticians: 14.6%; endocrinologist, diabetes educators, dietician and general practitioners (GP): 11.3%; endocrinologist and GP: 10.6%; GP only: 4.6%; all clinicians recommended to assist with self‐management: 1.3%; 2.7% did not consult any clinician. Interview: Participants (n = 33) reported eight key disincentives to consultation with multidisciplinary clinicians. These were time constraints; provision of conflicting advice; inaccessibility of health services; variation in service standards; cost constraints; failure of clinicians to refer to other clinicians; lack of opportunity to build a therapeutic relationship; and failure of clinicians to engage in shared decision making. Conclusion: Our results indicate that high attrition rates of young adults with Type 1 diabetes from recommended diabetes health services is linked to the failure of those services to meet the needs and preferences of their patients. The identified needs and preferences included joint consultation with multi‐disciplinary team clinicians; flexible access to advice by email or telephone consultation; and shared decision making. Patient engagement in health‐service re‐design has implications for improved health‐service delivery and enhanced treatment outcomes. [ABSTRACT FROM AUTHOR]

Purpose This study aimed to explore peoples' needs and expectations of written medicines information (WMI), and to determine the barriers and facilitators experienced or perceived in the context of WMI provision and use. Methods We conducted eight focus groups with 62 participants over 6 weeks in late 2008 in New South Wales, Australia. Using a semi-structured topic schedule and examples of WMI from Australia and other English-speaking countries as a guide, we explored themes relevant to WMI, including participant experiences, attitudes, beliefs and expectations. Findings Our findings suggest less than half had previously received WMI, with many unaware of its availability. Many, but not all, wanted WMI to supplement the spoken information they received but not to replace it, and it was predominantly used to facilitate informed choice, ascertain medicine suitability and review instructions. The current leaflets were considered technical and long, and a summary leaflet in addition to comprehensive information was favoured. Accurate side-effect information was the most important element that participants desired. The most common barriers to effective WMI use were time constraints and patient confidence, with participants citing empowerment, time and health-care professional (HCP)-patient relationships as important facilitators. Conclusion The findings provide insight and understanding of peoples needs and expectations, and clarify issues associated with use and non-use of WMI. Challenges include addressing the barriers, especially of time and HCP attitudes to drive changes to workplace practices, and learning from the facilitating factors to encourage awareness and accessibility to WMI as a tool to empower patients. [ABSTRACT FROM AUTHOR]

Objective To compare the relative importance of medicine attributes and decision-making preferences of patients with higher or lower levels of insurance coverage in a publicly funded health care system. Design and setting Cross-sectional telephone survey of randomly selected regular medicine users aged ≥18 years in the Hunter Valley, NSW, Australia. Main variables studied Questions about 27 medicine attributes and active involvement in decisions to start a new medicine. Results After adjustment, there were few differences between the 408 concession card holders (high insurance) and 410 general beneficiaries (low insurance) in their assessment of the importance of medicine attributes. For both groups, the explanation of treatment options, establishing the need for the medicine, and medicine efficacy and safety were the most important considerations. Medicine costs, the treatment burden and medicine familiarity were less important; the views of family and friends ranked lowest. There was a statistically significantly greater influence of the regular doctor for the concession card holders than general beneficiaries (93.6 vs. 84%, adjusted OR 2.80, 95% CI 1.31, 5.99). Concession card holders were more likely to favour doctors having more say in the decision-making process (crude OR 1.69, 95% CI 1.28, 2.24), and more likely to report the most recent treatment decision being made by the doctor alone, compared with general beneficiaries (61.2 vs. 40.3%). Conclusion Medicine need, efficacy and safety are viewed as paramount for most patients, irrespective of insurance status. While patients report the importance of participation in treatment decisions, delegation of decision making to the doctor was common in practice. [ABSTRACT FROM AUTHOR]

Studies of women's experiences of being overweight and pregnant are limited in the literature. Given the increasing rates of obesity in pregnant women, and the impact of being overweight on the health of the mother and the child, this qualitative descriptive study aimed to explore the perceptions and experiences of overweight pregnant women attending two maternity units in Sydney, Australia. Fourteen women aged between 25 and 42 years with a body mass index greater than 30 kg/m2 participated in a face-to-face interview in their third trimester of pregnancy or in the early post-natal period. All interviews were recorded and transcribed. Field notes were also recorded following each interview. Data were analysed using thematic analysis. Four themes were identified in the data: 'being overweight and pregnant', 'being on a continuum of change', 'get alongside us' and finally 'wanting the same treatment as everyone else'. Most women recognised their weight as an issue both for their own health and well-being and for its impact on the baby. Women believed health professionals should address the issue of obesity with them but do so in a supportive and positive way that recognised their individual needs and expectations. Health professionals need to consider new approaches or models of care for overweight women that give them support and enable individual needs and expectations to be met. Culturally specific programs may also need to be developed. [ABSTRACT FROM AUTHOR]