Author: Ivana Ristevski
Priority 3:
“How to provide culturally competent social, emotional and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?”
The Research Development Working group has chosen Priority 3 from our list of Top 10 Retinoblastoma Research Priorities to actualize through the development of a research project aimed at solving it. We currently do not know how best to address the psychosocial needs of families affected by retinoblastoma. Individual needs of patients, siblings and parents may vary, and depend on the nature of the retinoblastoma diagnosis (e.g. unilateral vs. bilateral, type of treatments received).
To tackle this problem, we are adapting a questionnaire that will be used in a research study of parents and patients to evaluate their psychosocial needs. This has been a very exciting process because we have several different experts in the group and they are have been applying their knowledge to make sure the questionnaire is valuable, useful, and informative. The researchers have been evaluating and discussing different types of validated questionnaires to select one that is best suited to address our priority. The parents and survivors have been reviewing the questionnaires and thinking how the questions might be understood by other retinoblastoma patients and families and considering if all “emotional and psychological” topics pertaining to retinoblastoma are being addressed. We also have several health professionals who have drawn from their experience to build a plan on how the questionnaire will be executed and how we will create a plan for recruitment.
At this point, we are working on creating our research protocol and I am proud to say that all team members are contributing to this process. For myself and a couple other participants, this will be our first attempt at writing a protocol. This seems like a daunting experience but the motivation we have to tackle this priority, our experience with retinoblastoma, and the support provided by the more seasoned members, I am confident that this will be a successful experience.
As we are moving forward in our project, we see an opportunity in our team to involve a psychologist to help us better understand the psychological implications in a family dealing with childhood cancer and to help us understand how we can connect with our younger patients and better understand their needs. If you know of a psychologist who has a research interest in the psychology of families dealing with childhood cancer and is keen to join our working group, please email us at retinoblastoma.research@sickkids.ca.