Insights from GoFundMe posts: Analyzing GoFundMe financial aid requests from brain tumor patients in Ontario, Canada

Abstract

Background

Primary central nervous system (CNS) tumors significantly affect individuals globally, with patients in Ontario, Canada, often bearing financial burdens for treatments such as oral chemotherapy due to insufficient coverage, resulting in complex insurance processes or out-of-pocket payments. However, limited understanding exists regarding other direct and indirect financial implications of their diagnosis. This study examines the financial strains, unmet needs, and overarching challenges encountered by Ontario’s brain tumor patients, utilizing GoFundMe posts as a unique data source to explore additional financial costs linked to CNS tumor diagnoses in the region.

Methods

A qualitative descriptive design employing thematic analysis analyzed GoFundMe posts supporting CNS tumor patients in Ontario from 2014 to 2021. A search strategy targeted posts featuring primary CNS tumor keywords, with NVivo 10 software facilitating post organization and coding.

Results

Focused on Ontario, the study yielded a final dataset of 154 posts from an initial pool of 9025, revealing further financial strain due to income loss among patients and caregivers. Posts highlighted various concerns: (1) navigating the complexities of accessing support services, (2) worries about family’s long-term financial and overall well-being, (3) insufficient public awareness about the financial and emotional burden on those affected, and (4) seeking emotional support, hope, and encouragement from the community.

Conclusions

These GoFundMe posts highlight a connection between financial burden, emotional distress, and the need for improved access to financial and emotional support services. The results emphasize distinct financial challenges faced by CNS tumor patients within Ontario’s healthcare system.

Primary central nervous system (CNS) tumors have an estimated annual incidence of approximately 3000 Canadians each year with an estimated 27 new diagnoses each day. In Ontario specifically, this translates to nearly 1200 cases annually.¹ An estimated 55 000 Canadians are currently living with a brain tumor. In the first year after diagnosis, it is estimated the average person will make 52 visits to their healthcare team.² Standard of care therapy depends on the tumor type; however, many tumors are treated with surgery, radiotherapy, and chemotherapy.³ Depending on the tumor type, chemotherapy can be oral or intravenous though most chemotherapies for CNS tumors are oral.^4,5

In Canada, not all chemotherapy treatment is covered under the publicly funded healthcare system. Healthcare is publicly funded under the Canada Health Act and is executed through federal, provincial, and territorial collaborations. While cancer care services are available in all provinces and territories, several dedicated entities operate alongside to offer specialized support for the diagnosis, treatment, and assistance of people with cancer. The extent, structure, and implementation of cancer control programs differ across provinces and territories.⁶ For example, while intravenous chemotherapy drugs are publicly funded and made available to each person in all provinces and territories; oral chemotherapy drugs are not. In the provinces of Quebec, Manitoba, Saskatchewan, Alberta, and British Columbia, oral chemotherapy medications are paid for by the provincial cancer care system, while in Ontario (and across Atlantic Canada), individuals aged 25–64 years may have to pay out of pocket for part or all the expenses associated with oral chemotherapy medications.^7,8 These treatments can cost up to $12 000 monthly, which many people may struggle to afford.⁹

For most people in Ontario who require oral chemotherapy, public drug funding can be accessed, whether through Home Care, the Ontario Disability Support Program, or the Trillium Drug Program.¹⁰ The Trillium Drug Program is a provincial government program designed to assist Ontario residents with high prescription drug costs relative to their income. It provides coverage for prescription drugs listed on the Ontario Drug Benefit Formulary, including oral chemotherapy medications.¹¹ Eligibility for the Trillium Drug Program is based on factors such as household income, prescription drug costs, and the number of people in the household. Once enrolled, participants pay a deductible based on their income, after which the program covers the remaining eligible drug costs for the rest of the benefit year.¹² This program aims to ensure that Ontario residents have access to essential medications, including oral chemotherapy, regardless of their financial circumstances.¹³ There may also be other direct and indirect costs including medical and non-medical expenses for which individuals must bear the responsibility of paying.¹⁴

Existing research on the financial challenges faced by people with brain tumors suggests a complex interplay of both direct and indirect burdens.¹⁵ Direct financial challenges encompass medical expenses, treatments, travel, and accommodation, and associated out-of-pocket costs such as unanticipated funeral expenses, psychosocial support, and medical equipment, often leading to increased financial strain on people and their families.¹⁶ Indirect challenges involve the broader economic impact, such as loss of income due to treatment-related employment disruptions and the psychological stress associated with financial instability.¹⁷ However, there are gaps in knowledge pertaining to the financial burden of people with brain tumors including an insufficient exploration of non-medical expenses, a limited understanding of the long-term financial implications for individuals and caregivers, and a lack of comprehensive research on the effectiveness of existing support systems, along with an absence of detailed insights into the dynamics and impact of individual-driven financial assistance through crowdfunding platforms.¹⁸ Exploring crowdfunding platforms like GoFundMe is a compelling avenue to fill the gaps in knowledge regarding the indirect financial needs of people with brain tumors as it offers a unique lens into individual-driven fundraising dynamics, providing insights into the unmet financial challenges, coping mechanisms, and the evolving role of community support in addressing the broader economic impact of brain tumor diagnoses and treatments.¹⁹

GoFundMe is a widely used online crowdfunding platform that enables individuals around the world to raise funds for a diverse range of personal, medical, educational, and charitable causes.^20,21 The platform was founded in 2010 and has evolved into a global community where users can create personalized fundraising posts, sharing compelling stories to connect with potential donors, with GoFundMe reporting that millions of new posts are created annually.²² Many individuals turn to this fundraising platform to help address any type of financial challenge including the affordability of cancer treatments and other direct and indirect costs associated with the impact of a cancer diagnosis^.23 For example, people often use this crowdfunding platform to cover expenses such as medical bills, prescription medications, transportation for treatment, and to mitigate the financial strain caused by lost wages during their cancer journey. Prior research on the use of GoFundMe has shown that posts provide a unique avenue to understand the direct and indirect financial challenges of a cancer diagnosis.²³ For example, Zhang et al. (2023) analyzed the narratives and updates within these posts and found that they enable researchers to gain insights into not only the economic impact of medical bills and treatments but also the emotional toll, familial support networks, and the resilience demonstrated by individuals facing the multifaceted challenges associated with cancer.²⁴ Thus, exploring GoFundMe can offer a way to learn about the financial and physical and psychosocial burdens faced by individuals diagnosed with cancer.

Ontario is Canada’s most populous province, and its healthcare landscape is notable for its large and diverse population, urban–rural disparities, and significant focus on healthcare infrastructure, research, and innovation, particularly in areas like cancer care.²⁵ The province has a comprehensive healthcare system, administered through the Ontario Health Insurance Plan, providing coverage for a wide range of essential medical services, including hospital care, physician services, diagnostic test, and emergency treatment. However, there are challenges in balancing the demand for healthcare services in densely populated urban areas, such as Toronto, with the needs of more rural and remote regions.²⁶ This dynamic creates a unique set of healthcare challenges that differ from other provinces and territories, requiring tailored approaches to address the diverse health needs of Ontario residents.²⁷

The aim of this study is to explore publicly available GoFundMe posts of people with brain tumors in Ontario. By analyzing these posts, this research seeks to understand the financial hardships, unmet needs, and overarching challenges faced by people with brain tumors and their families using GoFundMe posts as a unique data source to investigate the additional direct and indirect financial costs associated with CNS tumor diagnoses for those living in Ontario, Canada. Through this exploration, the study aspires to contribute valuable insights that can enhance the quality of care and support available to people with brain tumors and their families in Ontario; to inform the development of targeted and effective support resources that cater specifically to the unique needs of this population.

Methods

This study involves the analysis of anonymized public data and does not directly involve human subjects or their identifiable information, no formal approval from an institutional review board or ethics committee was required. The data used in this study were gathered in compliance with GoFundMe’s terms of service and privacy policy.

A qualitative descriptive design^28,29 was used to explore the GoFundMe posts of brain tumor patients in Ontario and those of their family members. Qualitative descriptive research is a research design that offers a comprehensive and straightforward way of describing a particular phenomenon or experience.²⁸ This method involves gathering data through interviews or observations of individuals who have experienced the phenomenon under investigation, or through document analysis that describes the phenomenon. The design prioritizes a realistic and practical understanding of a phenomenon or experience while acknowledging that everything is subject to interpretation, allowing the data to speak for itself.²⁹ The qualitative descriptive approach was chosen to provide a descriptive account of the experiences and financial challenges of brain tumor patients in Ontario via the analysis of GoFundMe posts thematically to illuminate the lesser-known direct and indirect financial costs due to their diagnosis and the overarching challenges faced these brain tumor patients and their families.

Data Collection

Using a custom Python script, GoFundMe posts associated with primary CNS tumors were scraped from goundme.com. The script used BeautifulSoup and Selenium libraries.^30,31 The search was performed on December 18, 2021, targeting posts containing at least one keyword related to CNS tumors, as outlined in Supplementary Appendix A. The list of terms which included different types of brain tumors and related conditions came directly from the WHO 2016 classification of tumors of the CNS which was the most up-to-date classification system at the time of search.³² Both adult and pediatric patients were included. The collected URLs were then processed, eliminating duplicates, and the unique links with associated page content were saved for subsequent analysis. Each page contained fundraiser descriptions, goals, amounts raised, post-start dates, and locations, contributing to the creation of a comprehensive dataset for further investigation.

Data Analysis

Braun & Clarke’s version of thematic analysis was used to guide the analysis of GoFundMe posts.³³ To become familiar with the data, each GoFundMe post was read by K.D. to get an overall impression of its contents. Identifying information was then removed from each post. Posts were reviewed to identify and highlight codes and preliminary themes. Once codes were established, a coding framework was developed. Codes were organized into themes and categories and compared with previously analyzed data using constant comparative analysis. This method allowed us to identify relevant themes, which were then compared. A constant comparative analysis compares codes, categories, and themes across individual transcripts. This iterative process aims to develop themes that represent each participant’s experience.³⁴ This type of constant comparison allowed us to home in on the most important themes emerging from the data. This process progressed until no further insights developed regarding the most relevant themes. Qualitative data analysis software (NVivo 10) was used to help organize the emerging codes and themes.

Results

The initial data scrape captured 9025 posts spanning the years 2014 to 2021. We removed all posts from outside of Canada leaving us with a total of 544 brain tumor posts made from within Canada (Figure 1). We then sorted these posts into patients residing within Ontario and provinces and territories outside of Ontario. Within the group of posts from/for Ontario-residing patients, we examined each post in detail and included only posts for patients indicating a need for assistance in relation to a CNS tumor diagnosis and excluded posts not indicating this assistance requirement. Posts were excluded if they were written in a language other than English, written by or on behalf of patients residing outside of Ontario, and created for patients with health conditions other than brain tumors. Posts excluded from our dataset included posts for pets with brain tumors, fundraisers made by individuals residing in Ontario on behalf of individuals with brain tumors living outside of Canada, and posts made by individuals with a brain tumor for reasons not relating to their diagnosis. Reasons not relating to their diagnosis included individuals with brain tumors starting posts to help cover medical expenses for another family member who is also facing health changes that are not CNS tumors. A total of 154 posts were included in our analysis (Figure 1).

Figure 1.

Flow chart of filtered GoFundMe posts. Illustrates the process of post selection for analysis. Initially, 9025 posts, where n, number of GoFundMe posts, were scraped from 2014 to 2021, with 544 remaining after excluding non-Canadian posts. These were further sorted into Ontario and other provinces/territories. Within Ontario, posts were examined for assistance requests related to central nervous system tumor diagnoses, resulting in 154 included posts after exclusions based on language, residency, and diagnosis relevance.

Demographics

The final sample consisted of 154 financial assistance fundraising posts. Posts were made by either brain tumor patients directly (n = 10, 6.5%) or by the family and friends of brain cancer patients (n = 133, 86.4%). For the remaining posts (n = 11, 7.1%), the individual(s) who created the post could not be determined. Of the 154 posts made, 84 posts were made for male patients, and 70 patients were for female patients. Fifty-three (34.5%) posts were made for pediatric patients, 92 (59.7%) were made for adult patients, and 9 (5.8%) posts the age of patient could not be determined. GoFundMe fundraising goals ranged from $200 to $200 000, with fundraising success varying widely, from as low as 0.25% to upwards of 100% of the target goal reached. Additionally, some posts exceeded their goals, raising amounts above the target goal. The average of the goal reached by all posts is 60.86%, the median goal reached is 67.45%, and the most common goal achievement level is 100%. Breaking down the data into specific ranges, 32 posts reached goals between 0% and 25%, 38 posts between 26% and 50%, 19 posts between 51% and 75%, and 65 between 76% and 100%. Patients were diagnosed with various CNS tumors including glioblastoma, astrocytoma, neuroblastoma, meningioma, germ cell tumors, neurofibroma, oligodendroglioma, and ependymoma. Posts came from patients residing in the 6 health regions of Ontario including Northwest (1%), Northeast (6%), Eastern (19%), Central (21%), Toronto (16%), and Western Ontario (36%) as defined by Ontario Health.³⁵ Posts were made for varying requests including brain tumor research and awareness (n = 37, 24%), funeral expenses (n = 11, 7.1%), treatment/medication/procedure cost and information (n = 76, 49.4%), loss of employment/income (n = 24, 15.6%), financial support (n = 31, 20.1%), child care (n = 15, 9.7%), caregiving support (n = 28, 18.2%), living expenses and transportation (n = 42, 27.3%), prayers and hope (n = 44, 28.6%), and family trip expenses (n = 7, 4.5%).

Findings

Overall, posts described the need for financial assistance to cover or offset the direct costs associated with affording cancer treatment and other medical expenses, psychosocial support, loss of wages from taking time away from work, and funeral expenses for those who lost a family member to brain cancer. However, in addition to these needs, GoFundMe posts also illuminated less direct and in-direct financial hardships. We group these hardships into the following 5 themes: (1) navigating the complexities of accessing support services, (2) concerns over the long-term financial well-being and overall health of their family, (3) lack of public awareness of the financial burden and emotional distress experienced by those impacted, and (4) a search for emotional support, hope, and encouragement from the community.

Navigating the complexities of accessing support services.—

Posts highlight the challenge of not knowing where to find necessary resources, reflecting a sense of helplessness in determining whom to contact for financial assistance and navigating the support system. This emerged in 2 different ways: (1) a lack of awareness of available financial, psychosocial, and medical support and (2) uncertainty about how to find support services.

A lack of awareness of available financial, psychosocial, and medical support

Fundraising posts highlighted a lack of knowing where to find financial, psychosocial, and medical support. As one person said: “… there are no curable treatments available for her... and many of her medications and medical equipment are not covered by the Ontario health insurance plan and are paid for out of pocket by her family, please help us find sources to remove some of the financial pressures! We are not sure where to start looking.” As this person’s experience describes, for them there was a lack of knowing where to start looking for financial support to pay for the medications and medical equipment. They were not sure where to start looking. Other posts indicated a similar lack of knowing. Another individual created the GoFundMe post to “…connect with others who might know how to access these vital resources” because they lacked the time, finances, and knowledge to find and afford the care they needed, adding: “We’ve searched endlessly, but it feels like we’re hitting dead ends. She needs cognitive rehabilitation programs to help with her memory and thinking skills, and as her illness progresses, we’re lost on where to access the right cognitive and palliative support for her.” With the lack of knowing where to find the appropriate support, patients and their loved ones expressed desperation for psychosocial and medical support. By not knowing, these individuals turned to GoFundMe to seek help.

Uncertainty about how to find support services

Posts also reflect a lack of knowing whom to contact to assist in finding financial assistance for psychosocial and medical support. Posts reflected a sense of helplessness, shown in the following excerpt “...with more expenses piling up…. I have now decided to make this GoFundMe page as I am not sure who to turn to for finding financial support….” This lack of knowing is reflected in other posts. Another person posted on behalf of an individual unsure of who to contact to find financial assistance to help pay for psychosocial and medical support, saying “My psychosocial team feels it’s best I have a canine cancer support therapy dog to help me through this...Getting this therapy dog and all the equipment set up is a lengthy process and I was wondering who I can reach out to for help.” By not knowing whom to contact to find support, individuals facing the financial burden of psychosocial and medical needs expressed a sense of overwhelming helplessness and turned to GoFundMe to raise money.

Concerns for the financial well-being and overall health of their family

Additionally, posts also reflect concerns associated with the overall financial well-being and health of the family of brain tumor patients, which lead to additional less-direct and in-direct financial hardships. This emerged in 2 different ways: (1) relying on daily spending and tapping into savings to afford medical and support care services; (2) changes in family roles and responsibilities.

Relying on daily spending and tapping into savings to afford medical and support care services

Posts indicated that paying for treatments and support services out of pocket had a devastating impact on the financial well-being of the individual and their family. For example, some individuals were forced to use their savings to afford treatment and/or supportive care services thereby impacting their financial vitality. “The chemotherapy isn’t free, and since she can no longer work, she will have to dip into her savings to pay for chemotherapy… and will make it challenging to cover their everyday expenses…,” was a reflection provided by a person posting on behalf of another individual. Other posts also reflected this strain. Posting on behalf of another individual, this person was concerned, noting that “Many of the medical equipment is not covered by government insurance and have to paid for out of pocket… [and now] they are having a hard time managing to make ends meet,” showing that the cost required to afford treatments and supportive care services jeopardized the family’s ability to afford immediate and longer-term expenses. These posts reflect that while some people could afford the required treatments and supportive care services, it often leads to consequences for both the immediate and long-term financial well-being of the individual and their family, resulting in indirect financial strain.

Changes in family roles and responsibilities

The shift in family roles and responsibilities triggered by the challenges of dealing with brain cancer, including caregiving demands and potential changes in employment status, further contributed to concerns about the financial well-being of the family. This led to additional direct and in-direct financial strain to afford treatment, supportive care, and daily expenses. An individual posting on behalf of another person stated “she [is now] unable to continue working… and she no longer has coverage for the prescriptions she needs and now [he], who works to pay for medications and family expenses has now taken time off work to look after her full time at home.” As described in this post, changes in family roles and responsibilities—marked by this person’s inability to work and his taking time off to provide full-time care—contributed to concerns about the family’s finances. Other posts indicated the same concern due to changes in family roles. “She is no longer working…[he] has now had to take time off from work to provide round-the-clock care for her and their children… they [now] need help with daily family needs and expenses during this challenging time.” Posts on GoFundMe reflect the shift in family dynamics associated with brain cancer, expressing concerns about the financial well-being of the individual and their families.

A lack of public awareness of the financial burdens and distress experienced by those impacted

Posts also reflect a perceived lack of public awareness of the financial burden and emotional distress experienced by patients and their families, which contributed to the financial and emotional hardships. This emerged in 2 different forms: (1) the need to raise awareness of the struggles and difficulties individuals and families face; (2) raising money for brain tumor research and support.

The need to raise awareness of the struggles and difficulties patients and families face

Many of the individuals who created these GoFundMe posts did so to raise awareness of the financial, physical, and emotional strain faced by those diagnosed and living with brain cancer. “Many people are unaware of the immense burdens faced by patients and their families…. [people need to] know about the hardships [those with brain cancer] are facing…” was stated in a GoFundMe post created by an individual on behalf of a person with brain cancer. Here, GoFundMe is being used as platform to share the emotional, physical, and financial difficulties to increase public awareness and the need for financial assistance. This post highlights that without this awareness, people may be less inclined to help. This individual elaborates by saying, “[he] doesn’t walk, eat, or speak and has spent the last 5 years of his life-fighting. We lost our home 2 years ago due to financial hardships brought on from his diagnosis,” which continues to suggest that without this type of awareness, those individuals, and their families will continue to struggle with the financial and emotional hardships from a diagnosis of brain cancer. Other posts reflect a similar need to inform the public about these types of hardships. “…we need to advocate and educate others about the needs of brain tumor patients and families” was part of the GoFundMe post created by an individual who recently lost some to brain cancer. With them having passed from the brain tumor, he continues to struggle financially, saying: “[since] I quit my job to take care of [him], I went through a hard period financially. I am still struggling to manage bills and rent” from the time he took away from work to support him, thereby seeking financial aid. He like many others turned to GoFundMe to raise awareness of the emotional and financial burden of a brain tumor diagnosis thereby hoping to gain financial aid stating, “Your contributions will not only provide much-needed financial assistance but also help raise awareness about the often-over-looked struggles of those fighting this relentless disease.” This strategy points to the perceived lack of public awareness of the burden faced by the individuals facing brain cancer and their families and the desire to educate others through sharing their stories.

Raising money for brain tumor research and support

GoFundMe was also being used as a platform to raise money for brain tumor research and access to support. Posts reflect a perceived lack of dedicated research and support for brain tumor patients. One individual who posted about a person who lost his life to brain cancer mentioned that they learned that “the National Cancer Institute allocates 96% of its cancer research funding towards adult cancer and the remaining 4% is divided up across approximately 400 types of childhood cancers each with its own molecular biology and unique treatment options.” Due to this inequity, they started the GoFundMe post in “hope to help accelerate research in this area by way of donated funds. All donated funds will go towards a charity or foundation dedicated to pediatric brain cancer research in hopes for a cure and creating funds to help families afford and access treatments for their children with pediatric brain cancer.” Thus, individuals did not only create posts to raise money to support themselves, friends, or their family, but to raise money for organizations involved in brain tumor research or who support those living with brain cancer or bereaving the loss of someone from the illness. Other posts reflect this type of advocacy. Another family who lost someone to brain cancer started a post “to raise money for life-saving cancer research and treatment and to create funds to help support families like us struggling to afford treatments.” Thus, patients, their friends, and family used GoFundMe to highlight the lack of research and access to support, which contributed to both direct and less direct financial struggles and a call to action to raise money not for themselves, but for organizations involved in brain cancer research and support.

Seeking emotional support, hope, and encouragement from the community

Finally, our analysis also showed how GoFundMe was used to address the lack of affordable or accessible support by using it as a tool to receive emotional support, hope, and encouragement from friends, family, and the broader community. By sharing personal stories and struggles, individuals created a platform for empathy, understanding, and encouragement from friends, family, and even strangers. One person with brain cancer expressed, “The outpouring of love, prayers, and well-wishes that I have received since sharing my diagnosis has been truly overwhelming and heartwarming. Each message of support reminds me that I am not alone in this fight and gives me the strength to keep pushing forward, even on the toughest days.” Other posts reflect this type of moral support. Sharing their story on GoFundMe, in addition to obtaining funding, can provide patients with hope and encouragement as they face their diagnosis and treatment. One individual posting on behalf of a person who just completed surgery for their brain tumor mentioned “Please join us with your prayers and support while [he] makes a strong recovery. Together, we can make a difference and show [him] the power of love, support, and unwavering hope.... Your kind words, prayers, and donations will help give us the strength to face each day with optimism and determination.” Therefore, patients and their loved ones turned to GoFundMe to seek emotional support, hope, and encouragement amidst their medical challenges, finding solace in the compassionate words and gestures of friends, family, and the wider community.

Discussion

We have described the financial burdens of patients with brain tumors in Ontario. Our analysis of GoFundMe posts has highlighted the various financial struggles brain tumor patients, and their families in Ontario face through their course of disease, both direct and indirect. Posts shed light on direct and indirect financial hardships connected to the lack of awareness about available support programs, uncertainty about whom to contact for assistance, concerns over long-term financial well-being, a call for increased public awareness of the financial and emotional distress experienced by individuals and families impacted by brain cancer. These narratives also highlight the platform’s role in seeking emotional support, hope, and encouragement from the community alongside fundraising efforts. These findings align with previous research on the lived experiences of brain tumor patients on crowdfunding platforms, highlighting the diverse financial needs that individuals and their families face during significant life changes.³⁶

The identified forms of financial assistance, including funding for treatment and medical expenses, including alternative therapies such as naturopathic and homeopathic medicines and travel for non-approved medications or procedures, psychosocial support and assistance equipment, loss of familial income, and funeral expenses, resonate with the diverse and complex financial difficulties observed across different crowdfunding scenarios including brain cancers.³⁷ In our analysis, financial aid requests for alternative cancer therapy funding were rare in Ontario for CNS patients. Similarly, requests for travel outside of the province for cancer therapy were rare. Patients experience the financial hardship of having to pay for certain treatments/medications out of pocket.³⁸ In addition to the direct costs of medical treatments, patients face indirect costs associated with the diagnosis including transportation and lodging expenses, psychosocial support and assistance equipment and services, and loss of family income due to patient and caregivers needing to take time off work.³⁹ The additional expenses and loss of income place strain on the financial circumstance of the family, making everyday activities and expenses such as bills, food, and housing difficult to sustain.⁴⁰ Unfortunately, many brain tumors have a high mortality rate. While mourning the loss of a loved one due to the cancer diagnosis, families are burdened with the financial responsibility to pay for funeral arrangements.⁴¹ These findings corroborate previous research on crowd-sourcing platforms for various diseases and cancers including brain cancer, which has highlighted the significant financial burden experienced by patients.

Other nonfinancial indirect costs linked to a brain cancer diagnosis, including the challenges faced by individuals and families in accessing financial, psychosocial, and medical support that emerged in our analysis also resonate with previous studies highlighting the indirect costs associated with serious illnesses, such as brain tumors, which often include expenses not covered by health insurance and necessitate out-of-pocket payments for medications and medical equipment.⁴² In addition to asking for financial assistance, posts reveal a significant lack of clarity among individuals affected by brain tumors regarding whom to contact for financial assistance in accessing psychosocial and medical support, as depicted in fundraising posts. These GoFundMe posts align with previous research on the financial needs of brain tumor patients, echoing concerns about treatment costs, the necessity for psychosocial support, the demand for assistive devices, and the overall financial strain faced by cancer patients.⁴³ These findings resonate with past studies utilizing crowdfunding as a lens into the challenges faced by cancer patients and their families and reiterate the financial needs of brain tumor patients established in prior research.⁴⁴

Posts raised concerns about the long-term financial well-being of families. These concerns manifested in various ways, reflecting both the financial and emotional toll of the diagnosis. The concern about paying for treatments and support services out of pocket reflects a long-term strain on family finances, resonating with prior crowdfunding research that recognizes the lasting effects of healthcare-related costs.⁴⁵ Individuals affected by brain tumors turn to GoFundMe not solely for financial assistance but also to address broader objectives, including raising awareness about the challenges faced by patients and their families and advocating for the need for increased research funding. This finding aligns with previous crowdfunding research that has identified diverse motivations for launching posts, extending beyond financial needs.⁴⁶ Posts highlighted the multifaceted role of GoFundMe beyond fundraising, serving as a platform for individuals affected by brain tumors to seek emotional support, hope, and encouragement from their social networks and the wider community. These findings align with previous research emphasizing the importance of social support in coping with serious illnesses, including brain tumors.⁴⁷

The novelty of these findings lies in the specificity of the primary CNS tumor context, shedding light on unique aspects of financial strain resulting from the diagnosis. This study innovatively uses GoFundMe posts as a data source to explore the financial burdens and unmet needs of brain tumor patients in Ontario. By analyzing these publicly shared personal narratives, the study illustrates the urgent need for financial support to cover the multifaceted financial and emotional challenges faced by patients and their families, including unanticipated medical costs, address psychosocial challenges, cope with the loss of income due to the inability to work, and manage funeral expenses, which are often overlooked in traditional research methodologies. While the general theme of crowdfunding to address life changes is consistent with prior research, the specific nuances related to brain tumor diagnoses add a novel layer to our understanding of the financial complexities individuals and families navigate in the face of such a diagnosis. The distinct challenges associated with brain tumors, including the lack of coverage for essential oral chemotherapy and the financial strain resulting from the differing dynamics of survival rates, contribute to the uniqueness of these findings within the broader landscape of crowdfunding research. Brain cancer care in Ontario incurs some of the highest costs compared to other cancers, partly due to the aggressive nature of certain tumor types that necessitate more intensive and expensive treatments.⁴⁸

Additionally, the uniqueness of these findings lies in the complexity of accessing support services, emphasizing the perceived lack of knowledge among patients and their loved ones regarding where to find appropriate support, leading them to express desperation and turn to platforms like GoFundMe for assistance. There was a profound sense of helplessness expressed by individuals facing the daunting task of navigating support systems. There are additional layers of challenges: the lack of awareness among brain tumor patients and their families regarding where to access affordable support services and whom to contact to find these resources. This underscores a critical gap in information dissemination and a lack of accessible information regarding available resources, calling for improved accessibility and awareness within specific patient populations to address these pressing needs effectively. The research provides a nuanced understanding of the broader socioeconomic impact of a brain tumor diagnosis. This insight is crucial for informing policy changes and the development of targeted support programs that address both the financial and emotional needs of brain tumor patients in Ontario and beyond.

Moreover, the originality of these results lies in the detailed exploration of nonfinancial indirect costs specific to brain cancer, shedding light on the deep concern and long-term worry for the financial well-being of their families as they grapple with the aftermath of a diagnosis. Additionally, the observed changes in family roles and responsibilities, driven by caregiving demands and alterations in employment status, represent a novel dimension that emphasizes the interconnectedness of financial concerns and familial dynamics in the context of brain cancer. The use of real-world data from GoFundMe posts adds a layer of authenticity and immediacy to the findings, emphasizing the urgent need for comprehensive support systems for these patients due to the holistic challenges patients and their families face.

The posts highlight a novel aspect by emphasizing its role as a platform for advocacy and awareness in the context of brain tumor diagnoses. The narratives presented demonstrate a multifaceted approach, where patients and their loved ones share personal stories to educate the public about the emotional and financial struggles associated with brain tumors. Moreover, the advocacy for increased research funding for brain tumor studies is a novel and significant dimension, showcasing GoFundMe as a tool not just for immediate financial relief but also for shaping conversations around broader societal and healthcare issues. This expands the understanding of crowdfunding’s potential impact, moving beyond immediate financial needs to encompass a broader spectrum of awareness-building and advocacy within the healthcare domain. The exploration of how sharing personal stories on GoFundMe fosters empathy, understanding, and encouragement, providing patients and their loved ones with a sense of solidarity and strength. Through heartfelt messages and gestures, individuals find comfort and motivation to navigate their diagnosis and treatment journey. This novel aspect underscores the significance of emotional support alongside financial assistance, highlighting the transformative power of compassion and solidarity in the face of medical challenges.

GoFundMe posts by brain tumor patients notably refrained from seeking financial assistance for medical expenses already covered by healthcare systems. For instance, patients in Ontario refrained from seeking financial support for the costs of surgery or radiation, recognizing that these treatments are covered by the provincial healthcare system. In contrast, individuals from countries without comprehensive healthcare coverage may seek assistance for these procedures. This selective approach in fundraising highlights the healthcare-specific financial challenges faced by patients, emphasizing their discernment in requesting support for uncovered or unexpected expenses.

The study is limited by the posts analyzed in this work. Because other fundraising platforms were not explored, we are limited by patients, their friends, and family members aware of the GoFundMe platform and actively using this resource to obtain financial aid. Patients using other fundraising platforms such as Fundly, JustGiving, GiveForward, etc., to obtain financial assistance are not included in our cohort and data analysis. Using publicly available data permits easy access to information; however, the key information may not be listed such as diagnosis, demographics, family dynamic, rural or urban residence, education level, occupation, income, language proficiency, treatment specifics, and overall health conditions. Demographic information plays a critical role in data analysis understanding the unique experiences, challenges, and needs of specific subpopulations of brain tumor patients. Additional demographic information could provide us with an additional understanding of financial burdens specific to different types of brain tumor patients at different ages and life stages and the specific assistance each group of brain tumor patient’s needs. Selection bias may be present in our sample of posts by brain tumor patients recruited from GoFundMe, as these individuals are likely to have more significant financial needs and limited access to resources, prompting them to seek crowdfunding. Consequently, this sample may not fully represent all brain tumor patients, particularly those with adequate financial support or alternative means of funding their care.

Furthermore, people utilizing GoFundMe may engage in “double dipping” by seeking financial support despite not genuinely requiring it.⁴⁹ The phenomenon of “double dipping” in GoFundMe posts underscores a potential lack of authenticity, where individuals may exploit the platform for personal gain despite not genuinely needing financial support. This raises doubts about the accuracy of portrayed financial hardships, especially when information is obtained indirectly from friends or neighbors who may not fully grasp available support programs. However, posts on GoFundMe often reflect individuals’ experiences and perceptions, showcasing how they interpret and feel about their circumstances and therefore important to explore.

By examining these posts, healthcare professionals can gain a deeper understanding of the less direct and indirect financial burdens associated with brain cancer treatment and the broader impact on patients’ well-being. Healthcare professionals can use this information to advocate for improved resources and services tailored to the unique needs of brain cancer patients, including enhanced financial assistance programs and psychosocial support networks. Supportive services that can be helpful for brain tumor patients include universal services such as social work, psychological, financial and nutritional counseling, support groups, rehabilitation services, palliative care, educational resources, caregiver support, and spiritual support. In addition, Canada-specific resources like the Brain Tumor Foundation of Canada and the Canadian Cancer Society, and Ontario-specific support through specialized care programs like Wellspring Cancer Support Foundation and Hospice Palliative Care Ontario. Analyzing GoFundMe posts can help healthcare providers identify individuals at risk of direct and indirect financial distress and implement targeted interventions to address their needs. Ultimately, leveraging GoFundMe data can lead to more holistic and patient-centered care approaches for individuals impacted by brain cancer in Ontario.

In conclusion, this study illuminates the intricate web of financial challenges faced by brain tumor patients in Ontario, as portrayed through their GoFundMe posts. The findings underscore the need for a holistic and nuanced approach to support that goes beyond immediate medical costs and addresses the broader impact on families. Effective strategies should encompass increased awareness, improved access to support resources, and advocacy for research funding to bring about comprehensive change in the landscape of brain cancer care.

Funding

This research was conducted without funding

Conflict of interest statement

None declared.

Authorship statement

Conceptualization, S.C; Data extraction: S.C., Y.I., A.Z.; Formal analysis, K.D. and J.A.; Supervision, J.A., and S.C; Writing—original draft, K.D. and J.A.; Writing—review and editing, K.D, J.A., S.C., Y.I., and A.Z. All authors have read and agreed to the published version of the manuscript.

Data Availability

GoFundMe database is available upon reasonable request. Python script used to scrape data available in Appendix A.

Future Directions

These methods can be applied to other healthcare systems and disease states, offering a distinctive and unique perspective on the financial challenges faced by patients due to issues in healthcare.