Life After Burn Study

The Western Australian Patient Self-Reported Impact on Quality of Life After Burn Injury: Part 1 – Ultralong Follow-up After Burn (ULFAB) study is a Western Australian research project led by the Fiona Wood Foundation and the Burn Service of WA. It is the first local study to explore long-term quality of life after burn injury, inviting adults who have received burn care in WA since 1993 to share their voices.

A burn injury can affect more than just the skin. While early treatment often focuses on wound healing and physical recovery, some individuals may experience ongoing effects that impact their movement, emotional well-being, or day-to-day life. In Western Australia (WA), specialist burn care is typically provided for up to two years; however, very little is known about how people are doing five, ten, or even twenty years later.

This research project recognises that recovery looks different for everyone. By sharing your lived experience, you are contributing to important research. Your input helps researchers understand what life is like after a burn injury. It may help ensure that future care and research better reflect the needs, values and priorities of the people they are intended to support.

By taking part, you may contribute to research that aims to understand:

• Find out how burn injuries may affect people's daily life over time, such as their ability to walk around, care for themselves, work, or do activities they enjoy
• Look at what factors might be linked to these outcomes (such as how severe the burn was, what treatment was needed, pain levels, or feelings of anxiety)
• Compare how people with burn injuries in WA are doing to the general Australian population

The Participant Information Sheet and Consent Form help explain the purpose of the Life After Burn study, what participation involves, and how your information will be used and protected. To view the please click here.

You are eligible to take part if:

• Are 18 years or older at the time of consent

• Have sustained a burn injury at any age

• Received burn care in Western Australia from 1993 onwards

• Were treated at the:

  • WA State Burn Service (Royal Perth Hospital, Fiona Stanley Hospital, Perth Children’s Hospital, or Princess Margaret Hospital)

  • or at another metropolitan, regional, or remote healthcare facility in WA

Please note that, unfortunately, we are able to include only individuals who have received their burn care in Western Australia for this study. This means we cannot collect information from treatment received interstate or overseas.

If you decide to take part, you will complete a short, confidential online survey. It should take about 10-15 minutes and involves:

1. Questions about you and your past burn injury - such as when it happened and what treatment you received
2. Five questions about your physical and emotional health today - covering mobility, self-care, usual activities, pain, and emotional wellbeing (using a scale from 1 "no problems" to 5 "extreme problems")
3. One final question asking you to rate your overall health on a scale from 0 (worst imaginable) to 100 (best imaginable)

The survey is hosted on REDCap, a secure research platform used by WA Health. Your responses will be stored securely for 7 years as per WA Health requirements, then safely deleted. You can access it using the QR code or this secure link:REDCap

At the end of the survey, you will be asked whether you would like to:

1. Receive a summary of the study findings when available
2. Allow us to check your answers against your medical records (to verify burn injury details)
3. If you want to stay connected with the Fiona Wood Foundation or members of the research team (please see additional information below for more information)

If you agree to any of these, you will be asked to provide your contact details.

By choosing to take part in this research, you are not expected to experience any harm. Some questions may, however, bring up memories or feelings about your injury or recovery. If this happens, you are welcome to skip a question or stop the survey at any time.

If you do feel upset, support is available:

• Lifeline Australia  – 13 11 14 (24/7) https://www.lifeline.org.au/ 

• Beyond Blue – 1300 22 4636 or beyondblue.org.au/get-support

• 13 YARN– 13 92 76 (24/7, Aboriginal and Torres Strait Islander crisis support line)

• Your GP or nearest Emergency Department

This survey is not a medical or psychological assessment. If your answers suggest distress, a gentle reminder will appear on screen encouraging you to reach out for support. If you ever feel suicidal or in danger of harming yourself, please call Lifeline Australia on 13 11 14 immediately or go to your nearest Emergency Department.

The FWF operates at the intersection of the community, universities, and the health system.

We bring together and support:

• Burn survivors, families and caregivers (community lived experience)
•  Researchers and universities (scientific discovery and evidence generation)
• Support the translation of research, and support the Burn Service of Western Australia (Perth Children’s Hospital & Fiona Stanley Hospital

Our role is to facilitate the translation of burns research into clinical practice from bench to bedside.

Optional Future Research Contact – Life After Burn Study

As part of the Life After Burn study, you will be asked whether you consent to being contacted in the future about research opportunities.

If you provide consent, you agree that the Fiona Wood Foundation and/or the Burn Service of Western Australia may contact you about future research studies related to burn care that you may be eligible to participate in.

This consent relates only to research opportunities. It is separate from your participation in the Life After Burn study. It does not affect your care or treatment. It can be withdrawn at any time. If you consent, your contact details will be securely stored and used solely to invite you to future research studies.

Burn Family Community (FWF Communications)

The FWF Burn Family is a Foundation-led community connection program for burn survivors, families and caregivers who wish to remain engaged with the Fiona Wood Foundation.

The Burn Family provides voluntary opt-in opportunities to:

• Receive communications about other research opportunities and Foundation initiatives
• Access support information and community resources
• Receive invitations to relevant events and activities
• Engage in opportunities to share lived experience, if desired
• Participate in our stories, media and case studies

You can opt in to the Burn Family community by clicking here. Participation is voluntary, and preferences can be updated or withdrawn at any time.

If you have any questions or concerns about the Life After Burn study, you are welcome to contact the Coordinating Principal Investigator:

Associate Professor Dale Edgar 

Phone: 0413 070 384

Email: dale.edgar@health.wa.gov.au

The Central WA Health Human Research Ethics Committee has approved this research project. If you have a complaint about how the study is being conducted or are concerned about your rights as a participant, please contact:

Central Office of Research Ethics (CORE)

Phone: (08) 9222 4214 Email: HREC@health.wa.gov.au

Please quote the project number: RGS00007746 when you contact them.

We have created a set of ready-made visual resources to help spread the word of the Lfe After Burn study, including posters, social media tiles and text captions. 

We believe that you know your communities best, and we invite you to choose the resources that will work for you. Whether you share one or several, how you use them is entirely up to you.

However, we kindly ask that these materials be shared as provided, so the details remain accurate and the study is shared as intended.

• Life After Burn Digital Toolkit 
• You can access the Dropbox folder by clicking here (social media tiles and posters)

For alternative poster sizes, formats, or additional support, please contact Gabrielle Ryan via email gabrielle@fionawoodfoundation.org.au 

Post on Facebook and Instagram 

• Like and follow the Fiona Wood Foundation onInstagram  | Facebook 
• Use the ready-made social media tiles
• Copy and paste the suggestion text caption found here
• Add the survey link or QR code so people can join directly
• Tag the FWF @fiona_wood_foundation.

Include in newsletters or updates.

• Insert the flyer or poster graphics exactly as supplied.
• Use the short text provided here to introduce the study and share the QR code.
• If readers would like more information, please direct them to the Fiona Wood Foundation website or the contact details listed on the flyer.

Display in your spaces

• Print and display the posters in clinics, community centres, or workplaces.
• If people ask for further details about the study and participation, please refer them to the Fiona Wood Foundation website www.fionawoodfoundation.org.au or Dr Dale Edgar (contact details are included on all materials).