The very first Support Group Communications Survey took place in the final quarter of 2024. Fifty-nine in-person Groups were invited to participate and 21 Groups responded by completing the questionnaire. 

In all, 321 individuals responded. Based on their input we were able to obtain the following feedback: 

Preferred Method of Communications 

1. Emails with files attached 
2. Printed publications 
3. Emails without files attached 
4. Emails printed out by the Group and distributed to participants as hard copies 
5. Information passed on verbally by Support Group Leaders 
6. Texts 
7. Web site visits 
8. Participation in Zoom meetings 
9. Information summarized in Group newsletters    
10. Phone calls 

Preferred Frequency of Communications 

65% Monthly 

18% Weekly 

14% Quarterly 

  3% Never  

Desired Topics for Communications 

1. Articles on Parkinson’s NSW services and supports 
2. Research updates 
3. Articles on exercise, health, and wellbeing 
4. News about Support Group activities 
5. Latest health updates from the InfoLine team 
6. Articles for care partners 
7. Articles on how others are living with Parkinson’s 
8. News about general Parkinson’s NSW activities 
9. Updates on Parkinson’s NSW advocacy 
10. Updates on Parkinson’s NSW fundraising activities 

Suggested Future Subjects for Coverage 

• More on opportunities to participate in clinical trials 

• Updates on progress being made in research 

• Recommendations on good books to read about Parkinson’s 

• Highlight Support Group Committees which are doing a good job and how they are doing this 

• More information about DBS and Parkinson’s Plus conditions 

• Add more YouTube videos as sources of Parkinson’s NSW information 

• Publish evaluations of Parkinson’s health and mobility aids 

• More updates on advances in treatments and medication breakthroughs 

• Article on how Parkinson’s affects your driving 

“We are already taking action on these suggestions,” said Stacey Foster, Support Group Coordinator of Parkinson’s NSW. “Articles on suggested topics are underway for our monthly InTouch newsletter, and we have committed to producing more videos in future – starting from coverage of our upcoming Support Group Leadership Conference. 

“It was also interesting for us to learn from the survey that 60 percent of respondents were completely unaware of the fact that Parkinson’s NSW services and supports are paid for from fundraising. We receive just 10 percent of our funding from Government grants,” she said.

“There was a widespread assumption that everything is paid for by Government, and unfortunately that is not correct.”        

Do you have any questions about this survey? Contact Communications Manager John Back at john.back@parkinsonsnsw.org.au