Getting Older

senior parents and son looking at laptop
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: 31 October 2019
Initial 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 scope current and emerging issues and how to ‘future proof’ the bleeding disorder communities as people grow older.

The consultation involved:
  • face-to-face and telephone interviews
  • community forums in the ACT and Queensland.
This 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.

A community survey has been developed and distributed as one way to achieve this.

The Getting Older Project needs assessment report will be completed in February 2020 and published on the HFA website. A summary of the report will also be published in National Haemophilia, HFA's quarterly journal.

The report will include:
  • background and literature review
  • methodology and findings
  • gaps and areas for further research
  • recommendations

Date last reviewed: 31 October 2019
The Getting Older Community Survey is 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.  
 
Who is the survey for?

The survey can be completed by any adult in the bleeding disorders community who lives in Australia and is aimed at:
  • people with bleeding disorders who are getting older
  • their partners, family, friends and carers. 
What is the survey about?

The survey asks 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. 
 
How can I do the survey?

If you are interested in completing the survey: If you need any help with the survey, please contact Preetha at HFA.

The survey is being distributed through HFA and local Foundation communication networks. If you know anyone else who might be interested in completing the survey, please tell them about this.
 
How is my privacy protected?

This survey is voluntary, anonymous and confidential. It is not for collecting health statistics or identifying personal information, but to help HFA with strategic planning, advocacy, support and education.

The survey is 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 is protected, read the Participant Information Sheet.
 
How will I find out about the results?

The survey results will form part of the HFA Getting Older needs assessment report, which will be published on the HFA website. The results may also be presented in other formats, eg, conference presentations or posters. A summary of the results will also be published in the HFA quarterly magazine, National Haemophilia, and on the HFA website.
 
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: 31 October 2019
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 community survey will be used to help understand the bleeding disorder community’s online usage and preferences and education and information needs. It is also investigating 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 involves establishing a national Consumer Focus Group to develop and test digital solutions for wider community use. Focus group participants have been recruited nationally from the bleeding disorders community. 

This focus group will 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). 

Date last reviewed: 31 October 2019

For more information about the Getting Older Project, contact:

Preetha Jayaram
HFA Getting Older Project Officer
E: pjayaram@haemophilia.org.au
T: 1800 807 173 (toll free)


Date last reviewed: 31 October 2019