Can you spare some time to help research into developing resources for adults affected by Rb? Nicole Beddard, who has had bilateral retinoblastoma (Rb), is looking for your help.
An open letter from Nicole:
For those of you who don’t know me I am Nicole Beddard, I live in the North East of England and am a bilateral Rb survivor.
Since my Masters research was published a lot has happened. I am still working at Teesside University as the Senior Psychology Technician – which I absolutely love! In 2020 I decided that I needed to carry on my passion for research dedicated to Rb and I signed up for a PhD. This is where I need your help.
As part of the background research to my PhD, I am looking for adults who have had Rb to share with me your experience of the long-term impacts and consequences that having Rb has had on your everyday life. This research will be in the format of an interview which should be about an hour long. It will all be done online (via MS Teams) and no face to face contact is needed. All I need you to do is answer some questions whilst having a cuppa in your comfy gear. All the interviews will be confidential, and all identities and responses will be completely anonymised.
This research will aim to develop practical guidelines, support material, and resources that can be used by adults in the UK who live with Rb as well as healthcare professionals, families of patients with Rb, and employers. It is hoped that this could be utilised by further and higher education institutions to inform the development of student educational support plans and will help to inform relevant institutions about the support needs of young people and adults affected by Rb and its treatment. I fundamentally want to spread awareness of Rb and help those that are affected by it, which means that the research, expectantly, will be published.
There is much needed research into this topic and I would be very grateful for your help. If you would like to find out more, please contact me at N.Beddard@tees.ac.uk