Experiences of Heart and Lung Transplantation in Australia: Creating a Pre- and Post-Transplant Resource

Project: Research

Project Description

People who need a lung, heart, or heart and lung transplant not only have life-threatening conditions but are also aware that their only chance of survival depends on a fellow human’s death. These are highly emotionally-arousing circumstances. Access to accounts of the experiences of transplant recipients can reduce distress and improve the mental health and wellbeing of potential and recent recipients, but there is little opportunity in Australia to learn from those who are living with transplanted organs. The known benefits of learning from peers include feeling less alone, being better informed, knowing what to ask clinicians, and insight into managing such difficult procedures.

We aim to achieve an accessible, informative website for prospective and recent recipients
We will create an innovative web-based tool for people who are considering or have recently undergone heart or lung transplantation and those who care for them. This will enable recipients to learn from those who have preceded them and help families and healthcare professionals to understand the challenges inherent in being an organ recipient and how best to meet recipients’ needs.

The website will feature video-recorded in-depth interviews with heart, lung, and heart-lung recipients. Patients, families, and health professionals can choose to view whole interviews or search for particular topics or questions, viewing all the material that matches their request. Interviews will also be available in text and audio formats.

What we have accomplished
We have completed interviews with seven lung and heart recipients, each lasting about an hour. Interviews were audio- and video-recorded; all have been transcribed. They are thoughtful, revealing, powerful accounts.

People in our videos
The people who have generously shared their stories are four women and three men who were aged from 18 to 67 when they received donated organs 2.5 to 22 years before the interview. Three of them had a double lung transplant, two had a heart transplant, one received a heart and lungs, and one had a single lung transplant. The need for transplantation arose from congenital heart disease, bronchiectasis, interstitial pneumonitis, chronic obstructive pulmonary disease, cardiomyopathy, coronary artery disease, and cystic fibrosis.

What still needs to be done
• Technical management of videos: Colour-correction, audio-processing to improve clarity
• Editing of videos by topic: such as “What I wish I'd known”, “Telling my children”, “Waiting for transplantation”, “Hoping for children”, “Before and after transplantation”, and “Life with a donated organ”
o Segment videos to allow visitors to the website to search by topic
• Website development
o Design website (for appearance and function)
o Organise videos and establish search function
o Select and establish hosting platform
 Videos take up a lot of space, making it too expensive to host them on a small site. YouTube or Google+ (for example) could serve as host with a link from selected websites (Heart Lung Transplant Trust Victoria, funder’s chosen websites)
• Design website evaluation process
• Launch website
• Evaluate use and effectiveness of the website

What funding will allow us to do
• Devote time to segmenting the videos and analysing the interviews
• Engage a designer to make the webpage attractive, welcoming, and user-friendly
• Engage a consultant with expertise in building websites
o Contribute to editing and publishing videos
o Create a search function: a particularly complex aspect of our project
• Design and implement an evaluation of the website

Associated tasks
There is no published scholarly work on the Australian experience of heart and lung transplantation. We will conduct a scholarly analysis of the transcripts and prepare a manuscript for publication in a peer-reviewed journal. Once the website is established we plan to conduct further interviews and make available an even more diverse set of experiences and reflections.

Dissemination
We will prepare a brief report for funders, consumer support organisations, and the Alfred Transplant Unit and publicise the resource through relevant websites and newsletters.

Ethics
We were given approval for the research (including website development) by the Alfred Hospital Ethics Committee (312/15) and the Monash University Human Research Ethics Committee (CF15/3152 – 2015001344).

All participants have agreed to have their video-recordings posted and their identities known and to leave their material on the site in the event of their death. Each participant will be invited to give or withhold permission as each item is posted and notified that they can change their minds at a later date.

Professor Greg Snell, Ms Gillian Coult, and Ms Jane Harris of the Alfred Transplant Team participated in planning discussions for the project. Members of the Alfred Transplant Team will be consulted before the website goes live and before each addition.
Short titleHeart/Lung Transplant Resource
StatusFinished
Effective start/end date23/04/1822/04/19