The HFA Getting Older with a bleeding disorder needs assessment report has now been published - read the report here.
Getting Older is a priority project for Haemophilia Foundation Australia (HFA). HFA is committed to supporting active, independent and fulfilling lives for people in our bleeding disorders community. In line with HFA's vision, the project aims to:
- identify, understand and respond to the range of needs people with bleeding disorders may have as they grow older
- help find appropriate solutions for them and their partner/family or friends/carers.
The project commenced in February 2019. It involves:
- a needs assessment
- practical digital solutions such as an online hub or other digital options for targeted information and peer support
- publishing community-based education resources with focused information about ageing and self-management with a bleeding disorder.
An Advisory Group was established to provide guidance to HFA on responding to the ageing-related needs of the bleeding disorders community. The Advisory Group consists of representatives from various stakeholder groups in relevant key areas, including community members, expert health professionals, researchers in the area of ageing and other organisations with a common interest in complex health conditions.
Date last reviewed: 19 June 2020
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
Date last reviewed: 19 June 2020
The Getting Older Community Survey was an opportunity for the wider Australian bleeding disorders community to let HFA know concerns around getting older with a bleeding disorder and what would help now and in the future. It was conducted during November 2019 to January 2020.
Who WAS the survey for?
The survey could be completed by
any adult in the bleeding disorders community who lives in Australia and was aimed at:
- people with bleeding disorders who are getting older
- their partners, family, friends and carers.
What Was the survey about?
The survey asked personal questions about aspirations for the future and what would help to achieve this, work/retirement, housing, finances, information and education, computer and mobile device use, support, and social connectedness.
SURVEY RESULTS
Survey results were published in the
Getting Older Project needs assessment report. The 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.
Please contact HFA on
hfaust@haemophilia.org.au or 1800 807 173 if you would like a print copy of the report (B&W only) posted to you.
THIS SURVEY IS NOW CLOSED
For more information about the survey:
The survey was distributed through HFA and local Foundation communication networks.
How WAS privacy protected?
This survey was voluntary, anonymous and confidential. It was not for collecting health statistics or identifying personal information, but to help HFA with strategic planning, advocacy, support and education.
The survey was available online using the SurveyMonkey platform and in print with reply paid envelopes to return the survey. For more information about how the survey data was protected,
read the Participant Information Sheet.
Ethics approval
The Bellberry Human Research Ethics Committee has reviewed and approved this study in accordance with the National Statement on Ethical Conduct in Human Research (2007) – incorporating all updates. This Statement has been developed to protect the interests of people who agree to participate in human research studies.
If you have any concerns or complaints about the conduct of this study, you are welcome to contact the Operations Manager, Bellberry Limited on 08 8361 3222.
Date last reviewed: 19 June 2020
One aspect of this project is to consider digital solutions such as an online hub for relevant education and information resources and digital options for peer support.
The
Getting Older Info Hub is now available on the HFA website and will continue to develop.
The community survey was used to help understand the bleeding disorder community’s online usage and preferences and education and information needs. It also investigated the community's capacity and interest in being part of a virtual community and other options for digital connection, including by telephone and VOIP technology such as Skype.
CONSUMER Focus group
The project also involved establishing a national Consumer Focus Group to develop and test digital solutions for wider community use. Focus group participants were recruited nationally from the bleeding disorders community.
This focus group met in November 2019 to generate and discuss ideas and suggestions about an online platform for information and peer support and other digital options (including telephone, Skype (VOIP technology), social media use and so on). They continue to work with HFA on the Info Hub and other digital solutions as they evolve.
Date last reviewed: 19 June 2020
For more information about the Getting Older Project, contact:
Suzanne O'Callaghan
HFA Policy Research and Education Manager
E: socallaghan@haemophilia.org.au
T: 1800 807 173 (toll free)
Date last reviewed: 19 June 2020