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.