The HFA Getting Older with a bleeding disorder needs assessment report has now been published – read the report here.
CONSULTATION
Consultation for the HFA Getting Older needs assessment was held with community members, state and territory Haemophilia Foundations, medical specialists, haemophilia nurses, psychosocial workers and physiotherapists, and other organisations working in relevant areas. The aim was to understand current and emerging issues and how to ‘future proof’ the bleeding disorder communities as people grow older.
Scoping and data collection for the needs assessment involved:
- face-to-face and telephone interviews
- community forums in the ACT and Queensland
- consultation with state/territory Haemophilia Foundations on key issues and priorities
- consultation meetings with other relevant agencies
- Information, review and advice from the HFA Getting Older Project Advisory Group
- HFA Getting Older community survey
- Age-related data from the PROBE Australia Study.
The initial phase of the consultation identified the need for wider engagement with the community to see whether concerns and needs are similar in the broader bleeding disorders community and also to answer specific questions about peer support, education/information needs and community behaviour and preferences relating to digital communications.
The Getting Older Community Survey was developed and distributed during late 2019 as one way to achieve this.
REPORT
The Getting Older Project needs assessment report was completed in May 2020 and published on the HFA website. A summary of the report will also be published in the June 2020 issue of National Haemophilia, HFA's quarterly journal.
The report includes:
- background and literature review
- methodology and findings
- gaps and areas for further research
- what will help and recommendations