Helping with Haemochromatosis Report

Our recent “Helping with Haemochromatosis” project has come to an end. We’d like to thank everyone who has participated in this project during the last few months.

Selka Beyerle, a social work student at the University of Tasmania conducted a review of the information and support available through Haemochromatosis Australia and other sources for people diagnosed with haemochromatosis. Selka delivered the report to Haemochromatosis Australia in October. The report contains  some very useful research findings and recommendations which will be a great help to us as we continue to improve our support materials and work to raise awareness of the condition.

Thanks to survey participants!

Thanks to everyone who participated in meetings, interviews and focus groups!

Thanks for other contributions by phone, email and in person!

This project sought feedback from people with a diagnosis of haemochromatosis and their support people, about their experiences of diagnosis and access to support and information. Your feedback has helped us to better understand current challenges, celebrate successes and inspire new ideas for the future!

Some key project outcomes from the project:

• It was encouraging to hear about positive interactions with GPs and health professionals and stories of early diagnosis. However, the project identified that some people continue to encounter significant challenges on their pathway to diagnosis and treatment.

• We were able to identify that key messages about Hh are still not properly understood by many people. Finding creative ways of raising awareness of Hh in the broader community will be an ongoing challenge, and important focus for the future.

• Project participants engaged with a wide range of different types of information, with both print and online information identified as important. Sharing stories, experiences and knowledge were important for some, while the latest research articles were important to others. Being aware of individual preferences and abilities, is important in making sure people have access to the type of support and information they need.

• Some participants let us know they found some information hard to understand. The project reviewed health literacy research and considered ways of simplifying information to make it easier to understand and more accessible to people.

We are making the report available with the express permission of the author, Ms Selka Bayerle. You may download a copy of the report for private use only. Please note the report is not intended as an academic article or guidance for people with haemochromatosis. It is intended as an internal review for use by Haemochromatosis Australia. The report is 52 pages and the PDF file is 893Kb.

Download the full report.

Thank you again for your support!

Selka Beyerle    (Social Work Student and Project Coordinator)
Tony Moorhead (Secretary, Haemochromatosis Australia)