Development and feasibility testing of an education program to improve knowledge and self-care among Aboriginal and Torres Strait Islander patients with heart failure

INTRODUCTION: There is a 70% higher age-adjusted incidence of heart failure (HF) among Aboriginal and Torres Strait Islander people, three times more hospitalisations and twice as many deaths as among non-Aboriginal people. There is a need to develop holistic yet individualised approaches in accord with the values of Aboriginal community health care to support patient education and self-care. The aim of this study was to re-design an existing HF educational resource (Fluid Watchers-Pacific Rim) to be culturally safe for Aboriginal and Torres Strait Islander peoples, working in collaboration with the local community, and to conduct feasibility testing.  METHODS: This study was conducted in two phases and utilised a mixed-methods approach (qualitative and quantitative). Phase 1 used action research methods to develop a culturally safe electronic resource to be provided to Aboriginal HF patients via a tablet computer. An HF expert panel adapted the existing resource to ensure it was evidence-based and contained appropriate language and images that reflects Aboriginal culture. A stakeholder group (which included Aboriginal workers and HF patients, as well as researchers and clinicians) then reviewed the resources, and changes were made accordingly. In Phase 2, the new resource was tested on a sample of Aboriginal HF patients to assess feasibility and acceptability. Patient knowledge, satisfaction and self-care behaviours were measured using a before and after design with validated questionnaires. As this was a pilot test to determine feasibility, no statistical comparisons were made.  RESULTS: Phase 1: Throughout the process of resource development, two main themes emerged from the stakeholder consultation. These were the importance of identity, meaning that it was important to ensure that the resource accurately reflected the local community, with the appropriate clothing, skin tone and voice. The resource was adapted to reflect this, and members of the local community voiced the recordings for the resource. The other theme was comprehension; images were important and all text was converted to the first person and used plain language. Phase 2: Five Aboriginal participants, mean age 61.6±10.0 years, with NYHA Class III and IV heart failure were enrolled. Participants reported a high level of satisfaction with the resource (83.0%). HF knowledge (percentage of correct responses) increased from 48.0±6.7% to 58.0±9.7%, a 20.8% increase, and results of the self-care index indicated that the biggest change was in patient confidence for self-care, with a 95% increase in confidence score (46.7±16.0 to 91.1±11.5). Changes in management and maintenance scores varied between patients.  CONCLUSIONS: By working in collaboration with HF experts, Aboriginal researchers and patients, a culturally safe HF resource has been developed for Aboriginal and Torres Strait Islander patients. Engaging Aboriginal researchers, capacity-building, and being responsive to local systems and structures enabled this pilot study to be successfully completed with the Aboriginal community and positive participant feedback demonstrated that the methodology used in this study was appropriate and acceptable; participants were able to engage with willingness and confidence

Development of a culturally specific heart failure self-care iPad teaching tool for Aboriginal and Torres Strait Islanders

Background / Aims: Self-care programs assisted by information technology can be highly effective in lowering re-hospitalisation and improving heart failure (HF) knowledge and self-management skills. To date, limited self-care resources have been developed specifically for Aboriginal and Torres Strait Islander patients. The aims of this project were to 1) develop HF self-care educational materials that would be engaging, interactive, simple to navigate, useable by patients, carers and healthcare workers within the hospital and community settings; 2) to evaluate their effectiveness on HF knowledge, self-care behaviours and user friendliness.Methods: This study used a mixed method design including participatory action research for the development of a self-care app using a pre-post test design and validated questionnaires to evaluate effectiveness.Results: There were a total of 19 participants involved in the development and design of the app, including cardiologists, software designers, heart failure specialists, indigenous elders, healthcare workers and five patients and their families. Feedback from these stakeholders included aspects of fonts, colours, images, language and health literacy. Patients involved in the pre-post test were 60% male; mean age 61.2 years; 60% NYHA Class III; 80% married. Overall, HF knowledge improved by 13%; self-care behaviours by 3.2% and satisfaction 86.2%.Conclusion: Patients enjoyed participating in designing the app and showed improvement in knowledge, self-care and satisfaction. Outcomes from this pilot have been encouraging enough for our team to proceed to a larger powered trial

Development of a culturally specific heart failure self-management iPad teaching tool for Aboriginal and Torres Strait Islander people

This paper describes the initial phases of the Fluid Watchers Pacific Rim project: a participatory action research project that involves developing and trialling an iPad app to provide monitoring and self-care for Indigenous Australians with heart failure. The development phase involved working with health experts, an IT team and Indigenous heart-failure patients through three cycles of development and critical reflection. This was followed by a small pilot study to examine the app’s effectiveness. In this paper, the researchers explain why IT-supported health education can be successful in decreasing re-hospitalisation and improving self-management skills. They describe the steps they took to ensure community participation and ownership of the project and present the findings of their pilot study. This pilot project suggests that an iPad app may be a practical and successful way to provide health-care support for Indigenous Australian heart-failure patients