Researchers exploring the use of medicinal cannabis in children with cancer are inviting UK families to share their experiences anonymously.
Researchers working with Canadian research organisation, the Canadian Collaborative for Childhood Cannabinoid Therapeutics (C4T), are looking for UK families to take part in a qualitative study on medicinal cannabis and childhood cancer.
The team from the University of Manitoba, Cancer Care Manitoba and C4T, is exploring the experiences of caregivers who have accessed medicinal cannabis for their child.
Having already conducted a series of parent-led interviews with families in Canada, C4T has teamed up with UK charity, Medcan Support, in expanding the study to the UK.
Parents will be invited to share their journey with medical cannabis, such as why they decided to try it, its effect on their child’s symptoms, any side-effects and what they want to see change.
It is hoped the findings will help to better understand some of the issues facing these families, including access to medical cannabis, physicians support and reasons for consumption.
The outcome will be used as a resource for other families, as well as a guide for future research and clinical trials.
The UK vs Canada
In the UK, no children are legally prescribed cannabis for symptoms related to cancer. This means that those families who are accessing it are forced to do so via the legacy market, making them vulnerable to stigma and even criminalisation.
Emmit Hameed, a medical student at the University of Manitoba, who is working on the study, reassured parents that they would be kept anonymous and told Cannabis Health that he hopes this will be a step towards changing attitudes.
“We wanted to share more perspectives by incorporating families from the UK into the study, and thought that we could make some interesting comparisons between the two groups,” he explained.
“It is my understanding that in the UK, at least for cancer treatment, people have to take the illicit route which isn’t really the case in Canada. Hopefully these results can make their way across the UK to care providers and encourage them to rethink how things look.”
In Canada, medical cannabis has been legal since 2001, but although the landscape looks very different to that of the UK, families still reported experiencing stigma from doctors and worrying about what people would think.
“In Canada stigma is not as much of an issue as in the UK, but it definitely exists,” said Hameed.
“The experiences are very different, depending on the oncology care team. There are families who have reported no issues with accessing cannabis and that they don’t feel stigmatised, whereas others have reported that they’ve had to fight or push against their care team in order to be taken seriously.
“There were also some people who were worried about what their friends and family might think.”
As is so often the case with medicinal cannabis, the findings so far show that parents are not being informed about the treatment option by their child’s healthcare team, rather they are forced to do their own research.
The majority of participants told the team they had found out about cannabis through oncology support groups on Facebook, according to Hameed.
“As of right now, if you have a child with cancer and you’re interested in medical cannabis, you have to come across that information from somewhere else. It’s not coming from your care team, who you would expect information to be coming from,” he said
“Parents are saying that if they hadn’t come across this information, whether it be on the internet or social media, they probably wouldn’t have learned about [medicinal cannabis] in the first place, which is a problem, because not all information on the internet is reputable.
“In both the UK and Canada, the patient has to approach the doctor. Ideally, these parents want it to be presented to them as an option, instead of them having to gather information themselves.”
Hameed added: “We’re hoping that the outcome will be a resource for parents to learn from, but we’re also hoping it can be used to guide future research. As time goes on, hopefully, we will go from cannabis being something that people hear about through the stories of others, to there being evidence-based data and clinical trials.”
Interested in taking part in the study?
Are you currently accessing medicinal cannabis for a child with cancer in the UK, or do you know someone who is? This can be for cancer-related symptoms or side-effects of treatment, including pain and nausea.
Participation is completely confidential and includes a 60-90 minute interview at a time convenient for you.
All participants will receive a gift card in appreciation for sharing their expertise.
You can reach out via Medcan Support by contacting info@medcansupport.co.uk
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