Healthy Living: Psychosocial Support
How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?
Even though retinoblastoma in Canada has a high survival rate, it comes with many challenges. For example, prolonged hospital stays, loss of an eye or vision, aggressive therapies, frequent appointments or long distance travel can add undue stress on the patient and their family. Patients and families can experiences anxiety over medical tests and checkups, worry about second cancer or recurrence, or concern over child development. This can have downstream effects on the overall wellbeing of patients, siblings, parents, and even extended family.
Why Is This One of the Top 10 Retinoblastoma Research Priorities?
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).
Personal Story
Receiving a cancer diagnosis shakes the family unit to the core. When my husband and I found out that the mass in our infant baby’s eye was cancer I felt like the floor had given way and I was falling in an endless black hole. Needless to say, we had a hard time coping with the diagnosis and understanding how our lives will now be different. We did not have a support system in place and no one but each other to turn to. The only words we heard were “it will get better” and “give it some time” but we needed help, and we need it at that moment.
RB Parent
Since the beginning of our journey, we have met other families who have traveled this path and we heard of many stories. Some rallied the support of their families and community and turned their pain into motivation to spread awareness, others were brought down when their relationships were tested. Some relationships simply could not withstand the pressure of two suffering partners while raising a family and working. I have also heard of sibling having to stay with a relative for weeks or months while the parents travel to a specialized hospital to receive care for the diagnosed child. The impact on siblings can be huge and finding the right help is very hard. Dealing with a young child with cancer, often it is the parents who need the most help.
Progress Towards This Priority
The CRRAB Research Development Working Group has chosen this priority to focus on first. The group is developing a protocol to assess the psychosocial needs of retinoblastoma patients and families. This is novel because the protocol is being jointly produced by patients, researchers, and clinicians working together as partners.
Ongoing Research
| Researcher | Title |
|---|---|
| D. Friedman | Effect of Treatment Modality on Psychosocial Functioning of Survivors of Unilateral Retinoblastoma |
| Canadian Retinoblastoma Research Advisory Board | Improving Psychosocial Care for Retinoblastoma Patients & Families |
Completed Research
Patient Engagement Level For This Priority
Patient Engagement Legend
Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.
Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.
Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.
In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.