Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study

Marissa Gibbard; Dawn Mount; Shahrad R. Rassekh; Harold (Hal) Siden

doi:10.9778/cmajo.20200212

Article Figures & Tables

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Table 1:

Patient and participant (parent) characteristics

Characteristic	No.^*
Patient sex
Female	5
Male	5
Patient age
Mean ± SD, yr	9.4 ± 4.9
Range	22 mo to 16 yr
Patient medical condition
Cancer	4
Neurologic/neurogenetic	6
Primary reason for patient cannabis use
Chemotherapy adverse effects	4
Epilepsy	6
Participating parent
Mother	9
Mother–father pair	1

Note: SD = standard deviation.
↵* Unless stated otherwise.

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Table 2:

Source and type of cannabis products

Source	Product type^*	No. of participants n = 10
Community dispensary or online	Nonstandardized products^† (no medical authorization needed)	3
Licensed medical producer	Nonpharmaceutical, standardized extracts (licensed products requiring medical authorization)	5
Both community dispensary and medical producer	Both nonstandardized and licensed products	2

↵* Categorization based on Pawliuk et al.7
↵† Refers to homemade or store-bought products that have not been licensed for medical use, often intended for recreational use.

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Table 3:

Themes and subthemes from interviews

Theme	Subtheme	Direct quotations that convey themes
Child and family context, and cannabis as a last resort	Children’s condition and severity	“Cannabis is the lesser of two evils.” (M9)
		“[We were] desperate to try and help our child … there is no cure for what he has.” (M5)
		“As a parent of a child with a terminal illness, we are more focused on the quality of life. … Sometimes I felt like our daughter was going to die if we didn’t do something about the seizure stuff.” (M8)
	Social acceptance v. stigma	“Outside opinions and voices don’t really influence my decision … we are going to do it whether it is legal or not, whether they like it or not.” (F5)
		“I wouldn’t tell [my daughter’s] grandma, because Grandma would say these are ‘bad drugs!’ … If this drug can help, why not [use it].” (M2)
		“Even though my daughter is only 5 years old, I want to empower her. I know there is nothing wrong with [using medical cannabis] … I am really open about it.” (M1)
	Parental love and responsibility	“I am going to do whatever I have to do to make sure that my child is living a happy life.” (M6)
	Parental love and responsibility	“What do we have to lose? … We can only get better.” (M7)
Varied information sources informed decision-making	Suppliers and advocates	“All of the information I get from my friends, from Facebook sometimes.” (M2)
	Suppliers and advocates	“I told [dispensary owner] what the problem was and he said what we should do and [my child’s] starting dose. He wrote it all down like a prescription so I would be clear on it because it can be a little overwhelming.” (M3)
	Communication with health care providers	“I know the doctor doesn’t like us to give it to our daughter.” (M2)
	Communication with health care providers	“[Our doctor] can’t really describe cannabis right now because of the situation with the government, but he is very open minded … he has been monitoring her and I always let him know that this is what I am doing.” (M4)
	Lack of reliable information	“If your doctor is not open to talk about it, then your next line of research is the Internet. … Being able to decipher biased and unbiased opinions running through parent forums … is really hard.” (M7)
	Lack of reliable information	“If doctors could say, ‘okay, go to this link’ and they have accurate or resourceful information for you to read about cannabis, that would be helpful for parents.” (M1)
	Practicalities and parent expertise	“[The product] is 97% CBD and 3% THC.” (M10)
	Practicalities and parent expertise	“We administer it via G-tube and we have … a really fatty substance that we can flush it with. Apparently the CBD oil needs fat in order to work best.” (M6)
	Need for research	“I was trying to figure out a dosage and I was being told mixed messages. … I think I am giving her enough, but I don’t know. … It would be nice if they could actually do some sort of research where they can see that her body is changing by using it.” (M4)
	Need for research	“It all really comes down to the lack of research that there is. If you have actual proper research done, then a reasonable doctor can be convinced that [authorizing cannabis use] is okay.” (M7)
Cannabis as an ambiguous medicine		“It’s not even a medication! It’s like oil! It’s like getting omega-3. … Just like any other drug, it can work for some … it should be one of the medications that [doctors] recommend.” (M10)
		“Cannabis is just more natural.” (M1)
		“Our son is very complex. … He needs real drugs [referring to cannabis].” (F5)
Perceived effects		“We were having 50–80 [seizures] a day, and on the cannabis we were … down to 1 a week.” (M6)
		“His mood has greatly improved when I give oil to him. His appetite is improved; his nausea is better.” (M3)
		“My son is already high on all this pharmaceutical shit he has been on, so for me, [adverse effects of cannabis] don’t really make a difference.” (M10)
Legal and financial challenges	Uncertain regulations	“[My child’s cannabis use] is legal-ish, I think. [Doctors] weren’t supposed to give [cannabis authorization] to us, but they did anyways.” (M8)
	Uncertain regulations	I guess the good thing is we can get the product legally, right? … I guess the next step is … somebody has to advocate for getting it covered [by insurance].” (M9)
	Costs	“I am a single mom and it’s a huge bill at the end of the month, but I do it because it’s saving my kid’s life. … Maybe if it was regulated like a pharmaceutical, I would be able to get it covered and it would take a huge stress off of me.” (M4)
	Costs	“It is costing us $318 a month … we would really like to double the dose but that would be about $650.” (M9)