Lives unaffected by cystic fibrosis

Mental Health is one of Cystic Fibrosis Australia's key objectives.

Expressions of interest – patient and caregiver interviews

EMPOWERED online medical education module series:
Mental Health in CF

What is the project?

From time of diagnosis, the potential threats of cystic fibrosis (CF) and the burdens of managing a chronic illness can be unrelenting and impact on the functioning and wellness of the patient and their family. This EMPOWERED online medical education module series, Mental Health in CF, aims to support multidisciplinary members of the CF healthcare team to work preventatively, and recognise and respond to emerging mental health issues in patients with CF (as well as for their caregivers and families). The goal is to increase awareness of the impact of mental health issues such as anxiety and depression on quality of life and functioning and enable appropriate clinical response and care to best support mental health challenges for patients and caregivers.

The EMPOWERED online medical education module series, Mental Health in CF, is being developed by the medical education team from The Med Collective, in partnership with an expert steering committee comprising Australian and International mental health experts.

This project is supported by Vertex Pharmaceuticals (Australia) Pty Ltd, who have provided funding to The Med Collective to support full and independent content development, implementation and roll out of this online medical education module series. All content is directed by the expert steering committee, with support from other healthcare experts who are tasked with providing independent review services. Vertex Pharmaceuticals (Australia) has had an opportunity to review the materials for scientific accuracy and fair balance.

Share your lived experience with CF

The Med Collective wishes to interview a number of patients and caregivers to understand their lived experience with CF and associated mental health challenges. This will be used to inform accurate case study development for a series of 'Mental health in CF' e-learning modules (sponsored by Vertex Pharmaceuticals). It will also ensure the modules to illustrate key points with real-world lived experience.

The planned interviews include:

  • patient in age range 20s-30s, diagnosed as a young child
  • patient in age range 20s-30s, diagnosed at an older age
  • patient in age range 18-20 (transitioning from paediatric to adult clinic) AND their parent/caregiver (to understand the patient’s story as a younger adolescent through to current day, as well as their parent/caregiver’s perspective
  • parent/caregiver with a younger child with CF, where the child was diagnosed pre-birth.        

Interviews will happen via Zoom meetings during Q1 2021, will take ~1 hour per interview, and will be recorded. The goal is to ensure the individual being interviewed feels comfortable to share their lived experience. The interview will be in the format of a relaxed chat, not a formal structured interview. However, participants will be given the chance to review questions beforehand and can opt out of answering questions at any time.

By participating, the individual being interviewed acknowledges permission is granted to The Med Collective to use de-identified direct (written) quotes from the interviews to illustrate key points and present their lived experience perspective. The Med Collective may seek written permission to use audio or video recordings, but will only do so with the explicit permission of the individual.

A detailed interview agreement is available to be reviewed by any individuals who are interested in being interviewed.

Please contact:   William Burke:  [email protected]

 

About the Mental Health Roadshow

Living with a chronic disease is difficult at the best of times, add in the additional stresses of everyday life - like holding down a job, paying bills, raising a family, plus heartbreaking life moments like losing friends and family members, drug affordability and consistent monitoring of your health and it’s no wonder that many chronic diseases are now extended to show their impact on mental health and general wellbeing. 

It is extremely important that health professionals in Australian CF Clinics are qualified and well trained in identifying and caring for people with CF and a mental health condition. We also believe there is so much information that should be made available for people with CF, their families, carers, and friends. 

In November 2018, we we lucky to bring two exceptional mental health professionals from the United States - Alexandra Quittner (Miami) and Anna Georgiopolous (Boston) to Australia to brief our community and to train our health professionals across the country in CF specific mental health. 

Sessions were held in Brisbane, Melbourne, Perth, Newcastle, Adelaide and Sydney.

 

 

Documents and Resources

Documents and resources referred to in the Mental Health Roadshow are now available online. Please choose below for materials relating to Community or Clinic sessions. 

1. Mental Health Tools for the CF Community>

2. Mental Health Tools for Health Professionals>

 

About the trial

We are excited to bring the Mental Health trial to Australia in 2019. More information on the trial and how you can be involved will be available soon.

 

With thanks

The Mental Health Roadshow has been made possible through the generous support of the Cystic Fibrosis Foundation and LJ Hooker Foundation. 

LJH-Foundation-re-v250x250.jpg LJ-Hooker-90-years-logo-250x250.jpg