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We want to keep supporting our chronically ill community, but we need your support to continue...

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Conquering Chronic Illness & TICNA. Inc groups have run out of Government funding, so Sanctuary has joined forces with these groups to help apply for more $$ through Government & Private funding bodies, but we need some data...

Which is why we're inviting you to take part in our surveys, giving you the opportunity to:

  • Share with us about your individual needs

  • Speak up about issues so we can inform government how our community could be supported better

  • Win prizes that will help you manage and/or heal from chronic illness

YOUR VOICE MATTERS NOW!

If you're keen to dive right into answering our questions please begin with our most important Demographic Survey first, (click on the image below).

 

For those of you who want to know more before getting started, scroll down to read all the finer details below.

Because we know many of you may struggle with cognitive fatigue and brain fog, we've split our questions up into four short 5 to 15 minute surveys so you can complete the ones relevant to you at your own pace, with breaks in between. 

Survey completion deadline is Sunday 31st March at Midnight. Raffle will be drawn in the following weeks. 

 

All the finer details about the surveys, prizes & sponsors:

 

We’re inviting you to take part in our short surveys so we can provide Government & Private funding bodies the statistical evidence that our chronically ill community needs more support and funding. 

 

CCI & TICNA Inc. groups have collaborated with Sanctuary Safe Spaces to create 4 short surveys each with a different focus. Allowing you to either complete just the main Demographic Survey, or complete the other surveys where relevant.

 

Whilst the incentive for completing our surveys is that we will be able to provide you more support, we do understand it takes time & energy to complete surveys, so as an added incentive we are offering 4 prize packs, ranging in value from $300 to $600 thanks to community donations.

PLUS
Just by participating, all participants will receive access to the Conquering Chronic Illness database of health related PDF resources.

Who are Conquering Chronic Illness, TICNA & Sanctuary Safe Spaces?!

Let us introduce you...

 

CCI’s main goal is to provide community connection, share knowledge & facilitate guidance wherever possible to help people manage and eventually conquer their chronic illnesses.

This organisation has been government funded, providing free sessions, has a private facebook support group & public facebook & instagram

 

The Tick-borne Illness Community Network Australia Inc (TICNA) has an immediate primary aim to educate the broader public about the dangers that ticks (and other vectors) can cause. Previously Government & private funded, TICNA works in conjunction with CCI to provide free sessions, has a private facebook support group, public facebook page & website in development.

 

Sanctuary Safe Spaces is a not for profit in the making. The aim of this organisation is to provide an easily accessible nurturing space where people suffering complex chronic illness feel safe, understood and supported in their journey. Sanctuary is volunteer run, sustained through private donations, and works collaboratively with the above two organisations, providing a shared online calendar for all events along with a public facebook page & instagram

 

 

About the Prizes

 

Thanks to generous donations from our community, we have created 4 prize packs which survey participants will have the chance to win via a raffle (draw date TBC).

 

Each completed survey = an entry to each prize raffle AND for each of our social media accounts you follow you'll get an additional entry into each raffle, giving you many more chances to win.

 

If you're not already following us, you can find our socials via the links below:

Join Conquering Chronic Illness Private Facebook Group

Follow Conquering Chronic Illness on Facebook

Follow Conquering Chronic Illness on Instagram

Follow Sanctuary on Facebook

Follow Sanctuary on Instagram

 

More about our prize packs & sponsors

Click on the images in the gallery to read more...

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

EVERY survey participant will have the option to receive access to download many of the health resources from the CCI PDF library that Peter has been compiling over decades. 

 

And for those of you who would like to know even more details about data collection and privacy, then read on...

 

PARTICIPANT INFORMATION:

 

Data collection title: Understanding the Chronic Illness Community

Data collected by Conquering Chronic Illness, TICNA Inc. & Sanctuary Safe Spaces.

***Please note: We DO NOT collect any telephone numbers or addresses of individuals. If you choose to supply your name and email to enter the prize draws and receive the free pdfs YOUR NAME AND EMAIL WILL BE REDACTED FROM THE DATA COLLECTED so as to remain anonymous. See more details below***

 

AIM

We would like to invite you to take part in these surveys to understand the chronic illness community better. You have been invited because you have been identified as being a part of a chronic illness community.


The data collected for the survey will ultimately benefit you and enable volunteer facilitators to continue programs, classes, and events and build YOUR community. This will allow us to have updated data suitable for many purposes, such as campaigning politicians for government funding and apply for private grants, government advocacy for improving health services and funding research and for media and organisation blogs and articles.

We would like to invite you to take part in these surveys to understand the chronic illness community better. You have been invited to participate because you have been identified as being a part of a chronic illness community.

The Participant Information outlined here tells you about the data collection project. It explains the processes involved with taking part. Knowing what is involved will help you decide whether to participate in the survey.

Please read this information carefully. Ask questions via email below, about anything you don't understand or want to know more about before deciding whether or not to take part.

Participation in this research is voluntary.

If you don't wish to participate, you don't have to. If you decide you want to take part in the survey, your submission of your answers is considered as your consent.

By completing the survey/s, you are telling us that you:

  • Understand what you have read

  • Consent to take part in the survey

  • Consent to the use of your information as described.

 

WHAT IS THE DATA COLLECTION STUDY ABOUT? 

The goal is to understand the participants in the chronic illness community.

You are invited to take part in the study either as a person with various, usually considered invisible, chronic illnesses and or have children who have various chronic conditions and/or disability.

DO I HAVE TO PARTICIPATE?

No, participation is completely voluntary. Choosing not to take part in this study will not have any negative repercussions at either a personal or organisational level.  

You can request to withdraw at any time before the data analysis has commenced without any prejudice, and any information collected before your withdrawal will not be used. You can do this by contacting the principal researcher Amelie Becher at sanctuary.safe.spaces@gmail.com

 

WHO CAN PARTICIPATE?

People who are a part of the Conquering Chronic Illness, TICNA Inc. and Sanctuary Safe Spaces groups as well as anyone belonging to any other groups who have various, usually considered invisible, chronic illnesses. These include but are not limited to those with MECFS, Long Covid, Fibromyalgia, Tick and other vector infections like Rickettsia, Lyme Disease and Ross River Virus etc, mould/Biotoxin illness, Mast Cell conditions, Multiple Chemical Sensitivities and EMF sensitivities and other chronic pain and autoimmune conditions.

 

WHAT WILL I HAVE TO DO?

1). Complete the main demographic survey. We need as many people as possible to participate as this enables good data to be used for further funding to benefit all of you.   

2). Complete the Zoom Class Survey. Even if you've never been to a class, we'd like to know why you haven't and what classes would interest you enough to join in future. The feedback on existing classes will help us to improve what we offer.

3). Complete the Future Survey. This will help us tailor our range of offerings to best suit your needs.

4). If applicable: complete the Children Survey. This tells us how we can support families with chronically ill/disabled children.

PARTICIPATION RAFFLE

If you decide to enter the raffle prizes and wish to obtain a link to the free pdfs for all who complete a survey, you will need to supply your name and email. Your name and email will only be used for this prize draw and free pdf notification link. If you do choose to supply these, you will be entered into a raffle for the prizes outlined and obtain a link to free health pdfs.

If you wish to subscribe to either or both the CCI/TICNA email and Sanctuary email lists you can do so separately at the bottom of this page

 

WHAT ARE THE RISKS OF PARTICIPATING?

None. It's all good, and you have the potential to win a prize whilst also obtaining access to the free pdf library. 

 

WHAT ARE THE BENEFITS OF PARTICIPATING?

The primary benefit is for not just the CCI, TICNA Inc. and Sanctuary communities to obtain current data about our community, but for other chronic illness communities to also have access to this redacted data to use for many purposes, such as consultations with politicians, government and private funding, government advocacy for improving health services and funding research, media and organisations blogs and articles. However, your participation will benefit the community by providing vital information on the impact of long-term chronic illness. The information may also help develop new interventions in the future. The information about the past classes and future survey will help CCI, TICNA and Sanctuary deliver specific targeted classes, programs or other ideas in the future that the community needs and wants.

 

WHO WILL HAVE ACCESS TO MY INFORMATION?

The volunteer facilitators of the CCI, TICNA Inc. and Sanctuary communities will take every care to remove any identifying material from the responses you provide as early as possible: ensuring that the answers given will not be viewed in conjunction with the identifying data by any person, at any stage in the compilation & analysis process. 

 

All individuals' responses will remain confidential, and participants will never be identified in any data reporting. Information received through the surveys will be grouped for reporting (e.g. we will present only group averages). 

 

Regarding long answer questions: We may quote from these answers where applicable for funding applications and advocacy. Any quotes used in this way will maintain anonymity.

 

All records containing personal information will remain confidential, and no information that could lead to the identification of any individual will be released unless required by law. However, the data collector cannot ultimately guarantee the confidentiality or anonymity of material transferred by email or the Internet.

The survey and feedback information supplied will be stored securely without any identifying email addresses assigned to the data. PLEASE NOTE: in the survey, we DO NOT collect any telephone or home addresses of individuals. We only collect state and postcode locations. We do give the option for people to provide their email address ONLY IF participants choose to receive access to the free PDFs, enter the raffle prize draw and/or join the mailing list. As mentioned previously, ALL identifying data will be redacted to ensure anonymity of survey responses.

Participation in this survey WILL NOT add you to any mailing list unless you choose to be added.


The compiled data analysis will be made available on the Conquering Chronic Illness private Facebook group for member's interest. The confidential information related to this research project will be destroyed. Every effort is made so that the information you supply will remain completely confidential. Non-identifiable data will be retained for future use and available to other chronic illness groups upon request. Additionally, non-identifiable data may be used for future purposes, for which ethics approval will be sought (e.g., we may combine this data with other similar datasets, or we may compare these scores to other populations). 

 

WILL YOU TELL ME THE RESULTS OF THE RESEARCH?
Yes. When compiled & analysed, the data summary will be posted within the Conquering Chronic Illness Facebook Group. We will also send a summary of the results to the subscribers of our mailing lists. Alternatively, if you do not wish to join the Conquering Chronic Illness Facebook Group or subscribe to the CCI/TICNA or Sanctuary email list, contact us directly to request a copy of the survey summary using one of the email addresses provided below.

 

FURTHER INFORMATION AND WHO TO CONTACT

The person you may need to contact will depend on the nature of your query.  If you want any further information concerning this project or if you have any problems that may be related to your involvement in the project, you can contact the research team directly: 

Primary data collector Amelie Becher from Sanctuary Safe Spaces and assistant Peter Owen from Conquering Chronic Illness and TICNA Inc. groups

If you have any complaints about any aspect of the surveys, the way it is being conducted, or any questions about being a research participant in general, please contact:  

 

Amelie
sanctuary.safe.spaces@gmail.com
Peter
info@conqueringchronicilleness.org

 

By consenting, I confirm that: 

  • I have read this Participant Information, and the nature and the purpose of the research project have been explained to me.

  • I understand and agree to take part.

  • I understand the nature of my involvement in the surveys.

  • I understand that I can withdraw from completing the surveys before data analysis has commenced and that this will not affect my status now or in the future.

  • I confirm that I am over 18 years of age.

  • I understand that while information gained during the project may be published, I will not be identified, and my results will remain confidential unless required by law.

  • I understand that my responses will be stored on servers with password-protected files (for online questionnaire responses).

  • I understand that only one data collector will have access to the data.

  • I understand that non-identifiable data will be shared publicly 

  • I understand the statement in the information sheet concerning the prizes for participating in the study.

Your submission of completed survey/s acts as your consent to participate in the study.

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Thanks again to our wonderful sponsors:

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