Parents’ Experiences Using Medical Cannabis for Their Child

Abstract

Background:

Parents across the United States use medical cannabis for their children, often without professional guidance. These parents have become more expert on medical cannabis than most health professionals.

Purpose:

Using a case-study design, this study was conducted to describe the experience of parents using medical cannabis for relief of seizures in their child or dependent.

Methods:

Data were subjected to qualitative content analysis for the identification of patterns and themes.

Findings:

Analysis of all data revealed 7 themes including ‘Discovery of Cannabis as a Medication’,’Guidance on Dosing’, ‘Costs and Benefits of Cannabis, ‘Distrust of the Pharmaceutical Industry’, ‘Federal Interference’, ‘God and Cannabis’, and ‘Changing Societal Perceptions about Medical Cannabis’.

Discussion:

Themes revealed a complex, multi-faceted experience. Many parents report benefit from medical cannabis, and are not hindered by the financial costs or uncertainties. Political and social influences have significant impact on the stigmatization and normalization of cannabis.

Introduction

The purpose of this study was to explore the experience of parents using medical cannabis for treatment of their child’s seizure disorder. Several in vivo and in vitro studies have demonstrated the anti-epileptic benefits of cannabidiol (CBD), a non-psychoactive cannabinoid found in the cannabis plant (Friedman & Devinsky, 2015). In addition to preclinical data and anecdotal reports, data from randomized control studies have shown a statistically significant decrease in frequency of seizures in children treated with a CBD extract (Devinsky et al., 2017). Despite these findings, federal prohibition restricts pediatric neurologists from prescribing cannabis to patients. Furthermore, in states where medical cannabis is legal, prescribers can only recommend cannabis; they cannot prescribe a drug that has not been approved by the United States’ Food and Drug Administration (FDA). In the absence of guidance from health care providers, parents have turned to advocacy groups and social media outlets such as Facebook© to learn about cannabis as a therapeutic agent for their child’s seizure disorder. Facebook groups such as ‘CBD for Children with Epilepsy’ allow patients, parents, and caregivers to share their stories and advice with each other on where to obtain cannabis, how to dose it, what side effects to observe for, and even how to wean the child from traditional anti-epileptic drugs.

Parents seeking medical cannabis face many unknowns, but continue to pursue it as the last possible treatment for their chronically ill children. The experience of these families is unique and multi-faceted. Parents and guardians across the United States are “experimenting” with medical cannabis use for their child. By accumulation of experiences these parents and guardians have become experts on medical cannabis use for their child, and information gained from their stories can further educate health care professionals.

Methods

A qualitative case study design was used in this study. Case study is an empirical inquiry that examines a phenomenon within its real-world context (Yin, 2014). Case study is especially important when the boundaries between context and phenomenon are not clearly evident. The use of multiple sources of evidence is a hallmark of case study (Anthony & Jack, 2009; Yin, 2014). In this study, multiple sources of data converged in a triangulated fashion, providing a holistic understanding of the phenomenon of medical cannabis use for pediatric epilepsy. The following research questions defined the unit of analysis, which was the experience of parents using medical cannabis for treatment of their child’s seizure disorder:

1. How do parents decide to seek medical cannabis treatment for their child with epilepsy?

2. What are the consequences of parents’ decision to seek medical cannabis treatment for their child?

3. How do parents who use cannabis treatment for their child with epilepsy describe their experience related to its use?

This study explored the multi-faceted and varied experience of parents using medical cannabis for relief of seizure activity in their child or dependent. Data were thus collected from multiple sources and outlets in an effort to capture the distinctive perspectives of all participants in the case study.

Data and Data Collection

Data were collected from several sources including social media sites, anonymous surveys, in-person interview, direct observation at a cannabis advocacy center, newspaper and magazine articles, and government documents. Prior to data collection, the study was approved by the Institutional Review Board (IRB). A secure server was provided from the institution’s technology department to ensure safe and secure handling of all study data.

Social Media.

An important source of data was social media, predominately Facebook. Administrators from several Facebook pages gave permission for the primary investigator (PI) to join the private group pages, post recruitment flyers about the study, and analyze postings on the pages. Posts were extracted from the following Facebook pages: CBD 4 Children with Epilepsy, CBD for Children with Epilepsy - Parent Support, Palmetto Harmony, PA Advocates for MMJ, Realm of Caring California, and Cannabis Oil Success Stories. The number of members of the Facebook pages ranged from several hundred to over 150,000. We began extracting Facebook posts after recruitment flyers were posted on each site. Extraction of Facebook posts continued until data saturation was met, and no novel issues were identified (Meng et al., 2017). Pinterest posts were identified using the search terms “medical marijuana” and “medical cannabis”. Pinterest posts were extracted in the same manner as Facebook posts.

Surveys.

An online survey was used to collect data from parents who wished to remain anonymous who were using medical cannabis for their child. Survey participants were recruited through the Facebook pages identified above as well as through the Realm of Caring, a cannabis advocacy group. Survey participants were parents or caregivers who were providing medical cannabis to their child/dependent for treatment of seizure disorder. The survey was designed using the software Qualtrics© (Qualtrics, Provo, UT). The survey addressed: (1) demographic data of the participant (parent/caregiver), (2) child’s/dependent’s medical history of seizures and use of anti-epileptic medications, (3) child’s/dependent’s current cannabis strain, dosing, administration, and source of purchase, and (4) parents’ views about the effects of medical cannabis on their child/dependent. The surveys were completed online and contained no identifiable information.

Direct Observation.

The PI travelled in February 2015 and in March 2016 to the Realm of Caring in Colorado Springs, Colorado and participated by invitation in two 8-hour observation days and informal discussions with Realm of Caring administrators as well as parents using the center as support for their use of cannabis for their children. Parents were at the Realm of Caring on those days for orientation classes. The PI observed the orientation class as well as the question-and-answer session, and then was provided time to talk to parents individually and informally about their experiences. The PI spent the observation days with a total of four administrators/volunteers and 22 parents/caregivers. The PI kept detailed memos of the observational experiences, which were included in data analysis.

Documentation.

Traditional media outlets were significant sources of data reflecting public opinion and legal considerations. Several news articles, editorials, and photographs were incorporated into the study, and sources for these pieces included the New York Times, Washington Post, Newsweek, Business Insider, Politico, Fox News, CNN, and private local photographers. Archival records were collected from federal and state government websites. Health care data about medical cannabis use were obtained through PubMed and professional organization websites.

Interviews.

Three participants volunteered and participated in interviews, however, two participants withdrew because of their concern about increased risk to them following changes in federal cannabis policy during the study period. Recruitment for in-person interviews was significantly hindered by changes in federal policy following former Attorney General Jeff Sessions’s rescission of the Cole and Ogden memoranda, with potential participants withdrawing from or declining participation in the study due to concerns about risk of prosecution. Interview participants were recruited through the previously identified Facebook pages above, the Realm of Caring, and snowball referral. Of note, at least one comment was made on a recruitment post cautioning parents that the PI might be a federal agent. This resulted in only one volunteer during the study period. The PI used an interview guide and asked questions about the child’s medical history, how the parent learned about cannabis, experiences using cannabis for their child, and changes they have seen in their child after starting medical cannabis. The interview was audio recorded and transcribed for the analysis.

Data Analysis

Data included information from 68 Facebook and Pinterest posts, 30 popular media articles, 19 government documents, and 5 health care documents. There were two direct observation experiences, one in-person interview participant, and 17 survey participants. A majority of survey participants, including the interview participant, were 30–50 years old (n=14, 78%), female (n=15, 83%), and white/Caucasian (n=14, 78%). Analysis of data occurred simultaneously with data collection to allow both processes to influence each other accordingly (Sandelowski, 2000).

Qualitative content analysis was used to create a summary of the information gathered from multiple data sources. This analytic method allowed the PI to use data reduction and sense-making-to identify core consistencies from a large volume of qualitative material (Patton, 2002), and to create and assign codes and develop themes. The qualitative data software management program ATLAS.ti© was used to assist the researcher with data management.

Data analysis was conducted in a step-wise process. First, data from all sources (e.g., interview transcript, Facebook posts, and survey) were repeatedly reviewed. The analysis began with the PI noting significant comments in the data, followed by coding of significant comments and developing descriptive labels for the codes to indicate the content of the comments. This step, an initial reduction of the data, summarized the substance of the data (Sandelowski, Davis, & Harris, 1989). Use of manifest content analysis resulted in a descriptive level of content and identification of codes and categories of content (Graneheim & Lundman, 2004). Categories were most often identified with the use of in vivo coding, with codes established using participants’ own words (Patton, 2002).

Next, the PI examined the other sources of data: public media articles, health care documents, and government documents. In the case study method, because of the various types and sources of data, it is often helpful to “play” with the data, described by Yin (2014) as searching for patterns or concepts that arise in the data. Data were placed in a matrix, which can facilitate “playing” with the data and organizing multiple sources of data (Yin, 2014). The PI grouped different data sources together by categories to create a visual display to aid in interpretation of the data. The matrix aided the PI in data reduction and triangulation, so that multiple sources of data were organized by converging lines of inquiry. According to Yin (2014), case study findings are more convincing and accurate when based on several different sources of information following a similar convergence. During data analysis the PI sorted the coded manifest content into categories and then continued to search for latent content to formulate as themes (Graneheim, Lindgren, & Lundman, 2017). Latent content analysis allowed further interpretation of the underlying meaning of the reduced data and identification of themes (Graneheim & Lundman, 2004).

An external auditor, experienced in qualitative research, reviewed the PI’s transcripts, memos, and notes along with results of data analysis to ensure reliable and consistent interpretation of the data. This step was essential to verify the dependability and confirmability of the study’s findings (Guba & Lincoln, 1985). The expert peer reviewer found the scientific methodology to be rigorous and valid.

To ensure credibility, all themes resulting from the study were reviewed by the interview participant, two individuals at the Realm of Caring, and an administrator of a Facebook page supporting parents using medical cannabis for their child; all agreed with the findings.

Final analysis of all data resulted in seven themes: Discovery of Cannabis as a Medication, Guidance on Dosing, Costs and Benefits of Cannabis, Distrust of the Pharmaceutical Industry, Federal Interference, God and Cannabis, and Changing Societal Perceptions about Medical Cannabis.

Results

Discovery of Cannabis as a Medicine

In health care, a therapeutic modality is traditionally introduced to a patient by a health care provider. However, in the current day, information regarding novel treatments and therapies is spread through other communication networks such as popular and social media. The interview participant reported that she learned about the use of medical cannabis from popular media and not from health care providers. She reported watching the Sanjay Gupta documentary, “Weed”, which aired starting in 2013 on CNN. She stated:

I watched [Weed] ... I saw this little girl Charlotte and I could see her convulse, kind of like I’ve seen [child’s name], and all the sudden stop, and then she started walking and she was dancing and she was able to eat again and be part of her life, and just have personality again. I thought oh my god. It was Sanjay Gupta saying, “Okay, this might be okay for other people to try.” And…I did a 360 like that moment.

Stories such as Charlotte Figi’s (Figure 1) have circulated through social and popular media. Public media are an important source of information that has led parents to discover cannabis as a medication. For example, a google search of “marijuana for epilepsy” resulted in over 455,000 articles and webpages.

Figure 1.

Matt Nager’s portrait of Charlotte and Paige Figi (with permission from photographer Matt Nager)

Guidance on Dosing

Because cannabis is classified as a schedule 1 drug, it is not FDA approved and there are no standardized packaging, dosing, or administration guidelines. Health care providers are often not the individuals who are guiding parents on dosing and administration. Only three survey participants reported that a health care professional helped them with dosing, while 14 reported obtaining guidance from a friend, advocacy group, Facebook group, or website.

The interview participant reported mixed experiences with health care professionals. She reported that when she first asked several pediatric neurologists about using medical cannabis they told her it would not work. She stated “we had to really shop around for neurologists because they were like, ‘No, that’s not going to work. That’s not going to help.’” She stated that her child’s current neurologist is “…open to it…[and] willing to understand our wish for that and respect that.” While the neurologist was open to the use of medical cannabis, the interview participant reported that her child’s neurologist will often turn to her or the Realm of Caring as the experts regarding medical cannabis use. She stated that when cannabis dosages need to be changed the neurologist has her ask the Realm of Caring prior to recommending any changes. She stated:

… the Realm of Caring was so great, because they really helped me to feel like, okay, this dose. And the doctor’s like, “Okay, check with Jackie at Realm of Caring. Don’t just do” – you know, like she was a very good reminder about, you know, making sure that we were doing what they recommended since they had all this experience.

Because health care providers lack expertise in the use of medical cannabis, many parents obtain advice on dosing from social media and advocacy groups. The Facebook pages contain multiple posts and comments regarding various cannabis products and recommendations for dosing. Parents often post general inquiries on Facebook pages, such as “What CBD oil do you use?” or “What strains do you use for epilepsy?” Other posts are more specific, e.g., parents might ask their peers for advice on weaning traditional anti-epileptic drugs while increasing cannabis dosages. Although this information is very useful for individuals trying to utilize this medication, it presents an opportunity for misinformation or false information to be shared. Survey participants reported giving significantly variable dosages of medical cannabis to their children, raising concerns about the standardization of cannabis products and the baseline knowledge of parents. Survey participants reported dosages in milliliters (ml), milligrams (mg), and drops. Dosages ranged from 0.035 ml to 1 ml and 1 mg to 34 mg.

Four survey participants and the interview participant named the Realm of Caring as a guide for help with dosing of medical marijuana. The Realm of Caring provides guidelines for pediatric and adult dosing on their ‘client portal’ section of their website. The Realm of Caring, as with other advocacy groups, can be contacted by phone or direct messaging and parents can make appointments for advice. It also has a client orientation on site where individuals can obtain advice when starting the hemp extract, Charlotte’s Web. Prior to the marketing of cannabis extract products such as Charlotte’s Web and Palmetto Harmony, many parents developed their own cannabis oils, extracts, and tinctures at home.

Cost and Benefits of Cannabis

All interview and survey participants reported benefit for their child from the use of medical cannabis. The interview participant stated several times that medical cannabis had improved her child’s quality of life, “what I’m amazed with is his quality of life, the way he is more present, smiles.” The majority of survey respondents also reported significant improvement in their child’s well-being after starting medical cannabis. (Table 1)

Table 1.

Parents’ Reports of Improvement in Child’s Well-being with Use of Medical Cannabis

	Improved a moderate to great amount	Improved a little or not at all	Worsened
Seizure control	86% (12)	28% (4)	0% (0)
Sleep	84% (11)	16% (2)	0% (0)
Communication	69% (9)	15% (2)	0% (0)
Self-injurious behavior	44% (4)	55% (5)	0% (0)
Mood	84% (10)	16% (2)	0% (0)
Activity level	92% (11)	8% (1)	0% (0)

Popular media are inundated with stories of parents proclaiming the benefits of medical cannabis for their child. In an interview with CBS, San Francisco Bay Area (CBS, 2018), a parent, Dan Kubisz, stated that “Within three weeks, a month…he [child] stopped seizing. CBD had been our shining light that is really was for us, that miracle that changed his world.” Another parent, interviewed by NBC (Kelley, 2015), stated that “It has changed my daughter’s life in the most positive way humanly possible. We’ve got our little girl back.”

The benefits of medical cannabis for children with epilepsy can be substantial, but the costs can be as well. CBD oils are expensive and are not covered by insurance. Many of the oils available online, including Charlotte’s Web, Palmetto Harmony, and Haleigh’s Hope, cost over $100 per bottle, and parents may be using more than a bottle a week. Parents reported spending up to $1500 a month, which can cause substantial financial strain for many families.

For some qualifying medical cannabis patients, there are discounts through advocacy groups or through local dispensaries or cultivators. The interview participant stated, “Realm of Caring gives a discount, though, if you have a diagnosis, which is helpful. It’s like $250 versus $500 for certain things … that was great.”

In addition to financial costs of medical cannabis, there are potential emotional and psychological costs related to the uncertainty about cannabis’s safety and efficacy and uncertainty about its legal standing. Although most of the Facebook posts reported the antiepileptic value of medical cannabis, several parents reported that it did not have an effect on their child’s seizures or in some cases it made them worse. The interview participant reported that cannabis strains with too much tetrahydrocannabinol (THC) caused increased seizures.

Several Facebook narratives stated that medical cannabis did not work at all for their child, or that it did not cause the same dramatic effects as it did for other children. When the interviewee was asked if there were any effects of medical cannabis on her child that she was hoping for but did not see, she responded:

Yeah, so I was hoping, like Charlotte, that he would start talking. And that didn’t happen. And it may never happen. We say he isn’t talking yet. That is something I don’t give up on.

The uncertainty regarding safety and efficacy did not appear to deter these participants, many individuals, since the potential benefits for their child can be so dramatic. Lori King, the mother of a child receiving cannabis, who was interviewed by Time magazine (Pickert, 2018), stated “It’s just this gamble based on what everybody else is doing. It’s an unknown, but there’s that glimmer of hope that this might just be the ticket.”

Distrust of Pharmaceutical Companies

The data reflect a broad divide between participants’ opinions of medical cannabis and their opinions about traditional pharmaceuticals and the companies that manufacture pharmaceuticals. Most parents using medical cannabis have experience with traditional antiepileptic drugs (AEDs). Many AEDs have significant side effects that can impair quality of life and cognitive functioning in children with epilepsy (Loring & Meador, 2004; Sillanpaa, Haataja, & Shinnar, 2004). The interview participant discussed the negative side effects of AEDs, stating:

So, we’ve tried Trileptol. Because of [child’s name]’s very sensitive system, I got a phone call from his school that he was drooling and red and unresponsive from a dose that a neurologist had given him… so, we titrated off of that and on to Depakote. And, you know, it was okay but he was very grumpy, he was very agitated. He didn’t have his personality back. He was not smiling a lot anymore, no more laughing. It was very tough.

All participants reported decreased use of AEDs after starting medical cannabis. Survey participants reported a significant decrease in the use of traditional AEDs after starting medical cannabis. Before starting medical cannabis 79% of survey participants were using 3 or more AEDs for their child. After starting medical cannabis 93% of survey participants were using fewer than 3 AEDs.

Facebook posts were often very critical of traditional pharmaceuticals and skeptical of their safety and efficacy, referring to them often as “poison”. Facebook participants were vocal about their distrust of not only the pharmaceutical agents, but also the pharmaceutical companies that produce the drugs, referring to the pharmaceutical industry and its conglomerates as ‘Big Pharma’. One Facebook participant posted, “we tried 11 pharmaceuticals [that] all increased seizures and [had] horrible side effects, so I do not trust big pharma companies.” When asked why cannabis remains prohibited at the federal level many Facebook participants simply post “$ $ $ $ $ $ $ $ $ $”. Several Facebook participants have posted this statement about cannabis:

This plant was put on earth to heal! I’m so sick of people treating it like it’s criminal! Criminal is the big pharma and “doctors” who use you as guinea pigs to make MILLIONS on you! When the hell are people going to wake up?

Multiple Facebook participants also questioned why a therapeutic drug that can be grown for free at home would be federally prohibited, but the synthetic pharmaceutical version of the medicine would be FDA approved. One Facebook participant posted, “that is exactly why cannabis is still Schedule 1…Big Pharma has yet to figure out how to monopolize upon its plethora of uses.” Although some Facebook participants advocated for an FDA-approved medical cannabis product that would be covered by insurance, most Facebook participants would prefer the pharmaceutical companies to stay out of the medical cannabis industry. One Facebook participant posted, “Pharma is not where this life-saving medicine needs to end up. Too many parents, patients and children have suffered and stuck their necks out for this research. Pharma has zero right to swoop in and profit off of any one of us or our children.”

One Facebook post summarized the negative sentiments expressed by multiple Facebook participants, stating:

This is what big Pharma has done to our children; drugged them to the point they cannot develop, caused more seizures than before the drugs, and when we try to remove them [pharmaceuticals] to bring them [children] back to us they have to suffer needlessly. It’s time people see US and hear US and understand US! We want a life for our kids that pharmaceuticals and the FDA will not give us, we want natural organic medicine that actually works and doesn’t need to be a single compound, patented, and a money train. Our kids are NOT A CASH COW big Pharma! We choose cannabis which is affordable and actually works! Non-addictive and we don’t have to watch our kids suffer anymore!

Federal Interference

The contradictory state and federal laws have created a high level of ambiguity and uncertainty for patients using medical cannabis. The Department of Justice’s policy on the prosecution of patients using medical cannabis in accordance with state laws has varied with different attorneys general. In 2017, former Attorney General Jeff Sessions rescinded prior U.S. Department of Justice memoranda that instructed U.S. attorneys general not to pursue prosecution for individuals using medical cannabis in accordance with state laws (Sessions, 2018). This has created more uncertainty and anxiety for patients using medical cannabis.

Facebook participants expressed anger and resentment towards Sessions and the federal government. Many Facebook participants viewed his opinion of cannabis as “archaic”, “draconian”, and his actions as “institutional coercion”. Facebook participants did not fear prosecution as much as they feared losing access to a life-saving medication. They feared that the federal government will raid cannabis farms and destroy plants, thereby limiting or terminating the source of medication for many patients.

God and Cannabis During the researcher’s direct observation experiences at the Realm of Caring, several religious undertones were observed. There were Christian crosses in several rooms, Christian popular music was heard coming from radios, and in common conversation there was often a mention of God or Jesus. Many employees and volunteers at the Realm of Caring referred to cannabis as a plant that is a “gift from God”. This was consistent with the Christian theory of creationism, a belief that all living organisms originate from a divine source and therefore are innately good (Martin, 2017). Many Facebook participants also stated that because cannabis was created by a divine power, often referred to as ‘God’, ‘Jesus’, or ‘Mother Nature’, then it must be good. The medicinal properties of cannabis further the belief that its presence on earth was intentional, and a gift from a divine source. Throughout Facebook and Instagram there were many references to the innate goodness of cannabis, simply because it was made by God or Mother Nature. For example, a Pinterest post (Figure 2) that quotes the bible:

Figure 2.

Pinterest Post (cureyourowncancer.org, 2018).

Changing Societal Perceptions about Medical Cannabis

The interview participant and several cannabis advocates from the Realm of Caring, reported during the observational experiences and interview, that the cultural perception of medical cannabis is changing. The interview participant noted that her child’s school and their family and friends were very accepting of her child’s medical cannabis use. Reflecting on the changing culture, she stated:

We need to look at California and other places where people have really taken the stigma out, and really seen it as something that’s… just potential, not as a negative. I think we’ve come a long way…I’d like to see even more advocacy, more people helping each other with it, and just in general more – more doctors, you know, more well-versed in it.

When asked if she ever felt stigmatized for using medical cannabis for her child, the interview participant stated:

Yeah, I mean, I’m sure there’s people that look down on us for doing it. I don’t really focus on that, which is interesting, because I tend to focus on anything negative that anyone ever says to me. But I don’t focus on that. But I’m sure there are people that are like, “What is she doing?” But I guess because I’ve seen so many gains that it just - doesn’t matter.

Limitations

A qualitative case study design was used to describe and understand the phenomenon of families using medical cannabis for treatment of their child’s epilepsy. As with other qualitative studies, the findings cannot be generalized. The demographics of interview and survey participants in this study reflect educated Caucasians in middle to upper socioeconomic classes. Individuals in low income brackets and minority populations were underrepresented. Further research is needed to examine whether this underrepresentation is the result of case study design, or if individuals in lower socioeconomic brackets are not utilizing medical cannabis due to the financial burden, or do not use social media to discuss it. Further research is also needed to explore the experiences of parents using medical cannabis not in accordance with their state laws. In this study, parents using medical cannabis for their child in states where it remained illegal were excluded because the researcher would be obligated by law to report them for child abuse. Further research is needed to examine the experiences of these families; however, given current federal restrictions such research is currently not possible.

The use of online Facebook narratives has several limitations including the inability to validate online identity and to obtain and describe demographic characteristics (Keim-Malpass, Steeves, & Kennedy, 2014). Further, only those with access to the Internet/computers/mobile devices are able to participate in online research, which may result in underrepresentation of those from lower socioeconomic classes. Qualitative analysis of online narratives is an evolving field of research and several ethical concerns exist, including the issue of informed consent and the possibility of copyright infringement depending on the source of the data. More limitations to the use of online narratives in research may come to light with continued discussion of the ownership and use of online data.

Discussion

Medical cannabis to treat pediatric epilepsy is being adopted by parents and guardians across the United States, propelled by the success stories highlighted in public and social media. Advocacy groups and social media sites, rather than health care providers, are often the primary information sources for patients, parents, and caregivers. Because no standardized dosing guidelines exist for medical cannabis, patients and parents often experiment using trial and error. Standardized guidelines are absent secondary to the lack of research that is prohibited by current federal regulation (Cohen, 2010).

Patients and families using medical cannabis are advancing the ‘normalization’ of cannabis. Goffman (1963) viewed normalization as the acceptance of stigmatized individuals by ‘normal’ individuals, and the treatment of such persons as if they have no stigma. Adult medical cannabis patients have reported significant stigma related to their cannabis use (Pedersen & Sandberg, 2013; Ryan & Sharts-Hopko, 2017), but this finding was not replicated in this study. Pediatric patients and their caregivers are becoming strong advocates for federal legalization.

The findings of this case study revealed the complexity of medical cannabis use and cannabis policy. Conflicting federal and state policies have resulted in a mistrust of the federal government as well as traditional pharmaceutical companies viewed as powerful anti-cannabis lobbyists. Parents using medical cannabis for treatment of their child’s seizure disorder expressed frustration with federal prohibition that not only limits the availability of medical cannabis across the country, but also inhibits the much-needed scientific research to establish its safety and efficacy. While parents advocate for more research, they also desire the freedom to choose an organic plant-based medicine they deem to be more holistic than traditional pharmaceuticals. Our findings indicate that there are multiple motivations for parents to seek out medical cannabis for relief of their child’s seizures, which is a direction for further research.

Conclusion

The case study approach allowed inclusion of a variety of sources of data to provide a holistic picture of the experiences of parents using medical cannabis for treatment of children with seizure disorder. This study’s findings revealed the multiple layers of complexity regarding cannabis, and suggest that criminalization versus legalization of cannabis is not a straightforward issue. Expertise is needed from multiple disciplines to develop and implement cannabis policies which permit therapeutic use while minimizing societal and personal harm.

Highlights:

• Parents across the United States are using cannabis to treat their child’s epilepsy

• The experiences of these parents and families are multi-faceted and complex

• Case study design provided a novel methodology for studying this complex phenomenon

• Qualitative content analysis of multiple sources of data revealed 7 central themes

• Political and social influences affect stigmatization and normalization of cannabis