Authors: Ivana Ristevski & Roxanne Noronha
Background
Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents, and families (at diagnosis and beyond)?” Retinoblastoma patients have distinct psychosocial needs and research has consistently demonstrated that Canadian retinoblastoma patients, parents, and survivors desire more psychosocial support.
In 2018, CRRAB collectively agreed to first address Priority #3, and a working group of patients, health professionals and researchers was developed to address this priority. This “Priority #3 Working Group” developed protocol to:
- Aim 1: Define supportive care needs of retinoblastoma families in Canada
- Aim 2: Develop supportive care intervention for retinoblastoma families
- Aim 3: Test supportive care intervention for retinoblastoma families
Despite five grant applications, funding has not been secured for this project. Therefore, a scaled-back version of the project was proposed, focusing on Aim 1, determining supportive care needs and distress of retinoblastoma parents and survivors. This study is an important first step, gathering information necessary for the development and evaluation of the proposed psychosocial care intervention (to be addressed in a future study).
Research Update
Participant recruitment for this study is now ongoing! The study received Research Ethics Board approval and officially launched on August 10!
With a recruitment goal of 400 participants, a robust recruitment plan is a central part of this project as we aim to accurately characterize the needs of a diverse group of retinoblastoma parents and survivors. To support this plan CRRAB has re-formed the Priority #3 Working Group. The Working Group currently meets bi-weekly to discuss recruitment methods and provide feedback on study recruitment materials.
Get Involved
- Participate in the study!
All retinoblastoma parents/caregivers and patients/survivors over 16 years of age who received all/part of their care in Canada are urged to participate. We need your participation in order to improve psychosocial care for patients and families affected by retinoblastoma. Complete the survey here: https://bit.ly/RBneeds
Understanding all family members’ unique perspectives is of utmost importance to uncover the needs of the whole community. Please encourage all eligible members of your family to participate by completing the survey!
- Share study information to your networks!
Share information about the study through social media or through your personal or professional connections to families affected by retinoblastoma.
- Join a Working Group meeting!
Join the next Working Group meeting to support this study’s recruitment efforts. The meeting is open to anyone interested including patients, healthcare professionals, and researchers.
Email retinoblastoma.research@sickkids.ca for a calendar invitation and zoom link.