Shared Journeys: Impact of Online Peer Support Communities on the Lives of Users with Chronic Diseases
Kelsey Roberson
University of Texas at Tyler
Abstract
A recent survey from Center for Disease Control (CDC) found that six of every ten adults in the United States live with a chronic disease. Within this group, over half are stricken with two or more of these ailments (2023). Chronic diseases, largely incurable, are rapidly increasing in frequency and prominence in the modern world. Researchers expect this rise to continue into the foreseeable future, with the number of diagnosed adults over fifty projected to double in the next twenty years, from 72 million to 144 million in the United States alone (Ansah & Chiu, 2023). This growing global threat has raised public demand for researchers to identify potential treatments and cures. However, as millions of Americans endure day-to-day living with chronic disease while waiting for these medical breakthroughs, it becomes clear that additional research is equally, if not more necessary to determine how to best enrich the lives of patients in the meantime. Past research has solidified location-based peer support groups as an effective form of enrichment for sufferers of chronic diseases. However, in light of recent global health crises and new technological expansions, such groups are converting to untraditional spaces: online forums. This research aims to determine how, if at all, the usage of online peer support groups improves the experiences of patients with chronic illness. This study will address this question through an in-depth literature review of chronic diseases, followed by a discussion of the history of modern online communities, and conclude with an analysis of a currently active online forum for users with cystic fibrosis, an increasingly common chronic disease
Literature Review
Chronic Diseases
This research seeks to establish the effectiveness of online peer support groups for chronic illnesses in enriching patients' lives. A chronic disease is a disease largely considered incurable by medical professionals, but whose symptoms can be treated to some extent (Kralik et al., 2006). Although it is impossible for these diseases to be cured in a patient’s lifespan, their symptoms can be managed through medications, therapies, and holistic techniques. In 2018, a study found that 133 million Americans (roughly half of the nation’s population) had been diagnosed with at least one chronic illness, a percentage that was projected to rise in the near future (Raghupathi & Raghupathi, 2018). Today, this projection has become a reality, with now six out of over ten Americans suffering from a form of chronic illness (CDC, 2023). With these irreversible diseases largely leading to a declined quality of life, it is critical to determine how to best improve the experiences of those affected. In order to find potential solutions to this nationwide problem, this research investigates the demographics of chronic disease patients in the United States, as well as their experiences living with their diagnosis.
Demographics
As this research studies the expanding issue of chronic illness in the United States, it is pertinent to identify what populations are most affected by this epidemic. Studies have found that racial and ethnic minorities are almost twice as likely to have a chronic disease than others. It has also been found that those in lower economic classes are more likely to contract a chronic disease than those in higher economic classes (Price et al, 2014). Another study found that women are more likely to suffer from a chronic disease than men. Although there are a plethora of explanations behind each of these findings, with some still being unknown today, a common factor can be seen in each of them. All of these populations are traditionally isolated, making it especially difficult for them to seek out medical assistance and peer support for their condition.
Experiences
A recent survey from Center for Disease Control (CDC) found that six of every ten adults in the United States live with a chronic disease. Within this group, over half are stricken with two or more of these ailments (2023). Chronic diseases, largely incurable, are rapidly increasing in frequency and prominence in the modern world. Researchers expect this rise to continue into the foreseeable future, with the number of diagnosed adults over fifty projected to double in the next twenty years, from 72 million to 144 million in the United States alone (Ansah & Chiu, 2023). This growing global threat has raised public demand for researchers to identify potential treatments and cures. However, as millions of Americans endure day-to-day living with chronic disease while waiting for these medical breakthroughs, it becomes clear that additional research is equally, if not more necessary to determine how to best enrich the lives of patients in the meantime. Past research has solidified location-based peer support groups as an effective form of enrichment for sufferers of chronic diseases. However, in light of recent global health crises and new technological expansions, such groups are converting to untraditional spaces: online forums. This research aims to determine how, if at all, the usage of online peer support groups improves the experiences of patients with chronic illness. This study will address this question through an in-depth literature review of chronic diseases, followed by a discussion of the history of modern online communities, and conclude with an analysis of a currently active online forum for users with cystic fibrosis, an increasingly common chronic disease
Maintaining Normalcy
The decline in health accompanied by chronic illness leads to major changes in the physical, psychological, social, and vocational aspects of a patient’s life (Whittemore & Dixon, 2008). Upon realizing these new boundaries, sufferers turn to treatment options, including therapies and medications, to restore their former abilities, leading to a process of medical trial and error. The journey to identify the treatment plan that works most effectively for an individual’s lifestyle and body can take months to years for healthcare providers to pinpoint and implement.
Working with Medical Professionals
As mentioned before, chronic illnesses cannot be cured, but many sufferers seek out varying treatments and medications to remedy related symptoms. To quash these symptoms, patients heavily rely on medical providers to find a treatment that works best for their situation. In addition to the aforementioned financial strain that this process can present to a patient, the quality of care from these healthcare workers has been found to be less than adequate. This lack of compassion is most often witnessed in providers' interactions with female patients, who often report feeling isolated and ignored by healthcare workers (Kralik, 2002). This behavior leads to an overall distrust in medical professionals, leading to chronic illness patients feeling more hesitant in seeking out treatment for their conditions.
Peer Support
In this research, the use of online peer support groups is scrutinized to determine how it can improve the experiences of patients with a chronic illness. Peer support can best be understood as a communal exercise in which people with shared experiences (either from the past or present) unite to exchange and receive information and advice related to their situation. Peer support has been utilized throughout history in the contexts of life experiences, physical ailments, and mental illness. Despite the diversity of the issues that peer support is used to treat, scholars have found its usage successful in a number of studies. A review of the origins of peer support reveals how this tool has evolved in the United States.
History
Prior to the invention of the Internet, peer support groups were held exclusively in a physical setting. In the United States, the use of peer support was used primarily in the psychological community, rather than considered to be treatment for a physical ailment. In the 1970’s, a dynamic wave of deinstitutionalization in the United States, resulting from the defunding of psychiatric facilities and successes in behavioral drug trials, caused peer support to surge. Former patients, now able to receive treatment outside of permanent institutions, banded together locally to discuss their experiences and symptoms (Stratford et al., 2017). This shift reminded Americans of peer support’s value as both a form of community and treatment for members. Today, we see peer support continuing to be utilized in a physical setting through organizations such as Alcoholics Anonymous and community grief groups. Peer support groups were used in the United States prior to the technique’s revival in the 1970s. Despite this verified existence, scholars have few records of these groups, its members, and the resources they shared. This absence can be tied to the lack of mass communication technologies up to this time. Although newspapers and community bulletins were able to advertise peer support groups in the area, such adverts would have cost money, most likely from a group’s participants. With this major form of communication largely inaccessible, these circles would primarily rely on word-of-mouth to make themselves known.
In-person problems
Although the usage of peer support groups began through in-person meetings, this setting has become unfavorable for many. One reason for this shift is in-person meetings' dependency on location. While some groups have community chapters throughout the nation, such as Alcoholics Anonymous, most are isolated to one location. Because of this limitation, those that live too far from the meeting place are unable to engage in the group. Another limitation of this kind of meeting was made especially prominent during the COVID-19 Pandemic, when gatherings were restricted to protect immunocompromised individuals. Many chronic diseases, including crohn’s disease and asthma, impede a person’s immune system in this way, making them especially susceptible to other illnesses, including COVID-19. Both of these factors caused peer support groups to shift to an online setting in recent years.
Chat Rooms
In the years following the launch of the Internet, users were limited in how they were able to communicate with one another. Email, although considered a monumental technology for communication, limited users to send messages to one user, much like the modern direct message (DM) on social media platforms (Preece et al., 2003). Listservers and bulletin boards, both put into circulation shortly after the rise of email in the early 1970s, initiated the expansion of what virtual interactions could look like, with multiple users now able to reply to a single posting. All of these developments led to the creation of chat rooms, the modern method of hosting massive online communities on the Internet. Of any modern website that hosts online communities, Reddit is the most widely-used to date. On Reddit, users can use “subreddits” (aka community groups specializing in a certain topic) to post questions or discussions relating to the group’s niche. Today, there is an excess of over 100,000 subreddits in use on the platform, which is available in its original format as a website and as a mobile app (Martin, 2023). Other major social media platforms, such as Facebook Meta and Instagram, have implemented new features to create similar online communities. Although there are several lesser-known websites that allow users to create and join virtual groups, many are targeted towards businesses (like Slack and Kajabi) or have not gained substantial popularity to be considered credible by Internet users. After witnessing the spread of community forums on the Internet, users with chronic illness have opted to establish groups focusing on their diagnosis. On Reddit, these communities include r/Thritis, r/CrohnsDisease, and r/Osteoporosis. Additionally, Reddit houses a broader forum for users with chronic illness, r/ChronicIllness. All of these forums, as well as similar ones that were not listed above, promote the sharing of information and personal experiences with other users on the page. The platform also has a number of pages based around users posting jokes and other humorous observations about their experiences.​
Internet detractions
Online communities typically have a number of security measures in place to protect users’ privacy and enhance their experiences. On Reddit, this can be seen through moderators, who act as the enforcers of a forum’s rules and guidelines, as well as the platform’s extensive array of spam filters. However, despite these efforts to maintain the quality of a forum, many online groups are still subjected to some complications. These issues include scammers that attempt to exploit users and spam comments that deter them from wanted information. These detractions all take away from the credibility of the forum as a legitimate resource for users, feeding into outdated stereotypes of the Internet being unreliable for information, particularly for medical topics. This research found that these concerns, although once valid, have been almost completely diminished through Reddit’s security measures and moderators.
Analysis
This research aims to determine how, if at all, the usage of online peer support groups improves the experiences of patients with a chronic illness. Through extensive literature review and the analysis of several past case studies on individual chat rooms for chronic disease patients, this study found that online support groups for chronic diseases enrich the lives of users by fostering far-reaching and interactive communities for those with diagnoses that would traditionally promote isolation and fear. In r/CysticFibrosis and other online communities, this enrichment can be noted in the forum’s ability to promote accessible spaces, instant connections, and the discussion of shared experiences for users.
Cystic Fibrosis
Cystic Fibrosis (CF), a genetically-inherited chronic illness, causes a patient's mucus to be overly thick, leading to an increased likelihood of lung damage and infections. Due to complications from the disease, CF patients typically have a lower life expectancy than others, with the current median age at death being 66 years old (Healio, 2023). In the United States, only 35,000 individuals are affected by CF (Centers for Disease Control and Prevention, 2022). With only .01% of the United States’ population diagnosed with CF, it is easy to see how sufferers may struggle to find others around them in the same circumstances. As is the case with many other chronic illnesses, CF patients often suffer from depression and anxiety throughout their lives.
r/CysticFibrosis
r/CysticFibrosis was created on September 27, 2009, over 14 years prior to this research taking place. It is well-established in the Reddit community, with auto-moderators and a posted list of rules to control the quality of what is posted. To date, the subreddit has over 8,000 members, identifying as someone who has CF or a loved one of someone diagnosed (parent, friend, partner). The online community directs users to other virtual locations as well, including databases on CF based on country, as well as a Steam and Discord group to further promote community between members. Based on the community’s established presence on Reddit and its large user base, it was chosen as the subject for this analysis.
Methodology
After choosing r/CysticFibrosis as the subject for this study, its analysis began utilizing the following methodology. Foremost, a period of several weeks (Oct. 20 to Nov. 20) was selected to examine posts from the forum. This limitation promotes an accurate representation of the community’s current trends, both in post topics and user interactions. Via Reddit’s sorting feature, the posts from this period were then ranked by the “top” ones, meaning those that had the most votes by users. These parameters left twenty-four posts to be examined for patterns of empowering behaviors from users. Results from this analysis were then compared to findings to previous studies of other online chronic disease communities.
Shared Experiences
Through an analysis of the r/CysticFibrosis subreddit, as well as past studies on other chronic disease online communities, this research determined that online support groups empower users by creating a space of relatability for them. This attribute of these groups can be seen in how the users discuss shared experiences relating to their common diagnosis.
Shared Experiences - Third Parties
One example of these commonalities is the users’ involvement with third parties. One user, replying to a posting from someone in isolation protocol at a hospital, sympathized with the original poster’s frustration with the medical professionals in the facility. Replying to the post, they wrote that “I always hated the way the staff will like peep in and then quickly shut the door when they realize I’m on isolation precautions. Like I have the fkn plague - just like you said” (WhineNDine883, 2023). Several posts during the observation period voiced complaints about their insurance companies, a frustration that many users on the subreddit agreed with. One reply to an insurance-related post agreed with the original poster’s fatigue from corresponding with representatives, writing, “I’m so sorry, I feel like we all have these fights with insurances constantly and it’s beyond exhausting” (Distinct_Audience457, 2023). These examples portray specific experiences that CF patients endure that would be alien to those without their diagnosis. Rather than taking time to explain these situations and the feelings of frustration that accompany them to an outsider, r/CysticFibrosis allows users to connect with others that are already familiar with them. Fostering these otherwise rare connections with other CF patients enables the subreddit to enrich the lives of users and deter feelings of isolation.
Shared Experiences - Diagnoses
Some posters on the r/CysticFibrosis actively seek out other users who have similar diagnoses to their own. One posting during the observation period requested advice from other users who had been diagnosed with Aspergillosis Fumigatus, a fungus that is often found cultured in the airways of CF patients. This user was met with twelve others on the subreddit replying to the post to share their own experiences with the fungus, how their doctor went about treating it, and if that treatment was successful in eliminating it from their airways. One reply to the post wrote, “I was in exactly the same boat as you at the start of the year! So scared of the unknown Prednisone helped me and no flare ups since! You probably are having abit of ABPA. It was a super scary diagnosis for me to begin with as it was so new but it is manageable:)” (Savannahmay__, 2023). In this example, the subreddit once again uses its community to deter discouraging feelings from its users in vulnerable spaces, offering familiarity and encouragement in the midst of a frightening and unexpected diagnosis. In contrast, in a physical setting, the original poster would likely not have met another CF patient who had previously had Aspergillosis Fumigatus.
Shared Experiences - Symptoms
On r/CysticFibrosis, many posts discuss the symptoms that users face in their day-to-day lives with CF. One post during the observation period discussed their current struggles with breathing due to the illness. In the post, the user opens by saying, “I’m so tired…every day is a coin toss on whether I am going to have to take each breath intentionally. I am worn out, and am on so many meds, to the point where I have to fight to get moving every day” (WeirdPersimmon4598, 2023). Several users replied to the post with encouragement for the original poster and discussions of their own experiences with breathing issues from CF. One reply said, “We all know this. I’ve been there. I’ve been in the hospital in a state where I said “Please, put me to sleep. I can’t do this no more”. I’ve had days where i thought “can’t it just one day not suck?!”. We know it” (Loud-Ticket-7327, 2023). Through this post and the interactions it generated, the subreddit is shown enriching the lives of users by creating a space where symptoms, and their severity, can be discussed. These symptoms, which are often misunderstood by outsiders to CF, are an important aspect of sufferers’ experiences with the disease. By creating a space where users can interact with others that feel a very similar pain to their own, users are able to relate to and encourage each other in ways that outsiders cannot.
Instant Connections
After choosing r/CysticFibrosis as the subject for this study, its analysis began utilizing the following methodology. Foremost, a period of several weeks (Oct. 20 to Nov. 20) was selected to examine posts from the forum. This limitation promotes an accurate representation of the community’s current trends, both in post topics and user interactions. Via Reddit’s sorting feature, the posts from this period were then ranked by the “top” ones, meaning those that had the most votes by users. These parameters left twenty-four posts to be examined for patterns of empowering behaviors from users. Results from this analysis were then compared to findings to previous studies of other online chronic disease communities. As of November 2023, r/CysticFibrosis consists of roughly 8,500 members. Like many other Reddit communities, the group uses notifications to inform users about new or trending posts. Additionally, the subreddit has a function that allows users to see how many members are currently online. Unlike in-person peer support groups, which typically meet on a weekly or biweekly basis, users can create and reply to posts on the subreddit whenever is convenient to them and their CF symptoms. This constant connection is seen further in the words of the subreddit’s members. In the replies of posts where the original poster feels discouraged or overwhelmed by their (or a loved one’s) diagnosis, the invitation to embrace this aspect of the community is seen prominently. In one of these replies, the user writes “It may be overwhelming now, but in time, you'll get the hang of it, and this will become your new normal. We're here when you need us” Shared Journeys 12 (Stoicsticks, 2023). This open invitation highlights the flexibility offered by r/CysticFibrosis, allowing users to log in with questions or frustrations at any time of the day. By being constantly available for users, the platform enriches their lives, surrounding them with an ever-present community of peers who share their diagnosis.
Accessible Space
By analyzing r/CysticFibrosis and past studies of other chronic disease online communities, this research determined that online support groups for chronic diseases empower users by creating a space for patients to have community without encountering barriers from their shared diagnosis. CF limits the lung capacity of patients and makes them more susceptible to infections that could decrease this capacity even more. To protect themselves from this danger, sufferers are typically placed in isolation protocol during hospital visits, which can last for months at a time when ill. When lung capacity is on the decline, patients are often unable to maintain jobs and “normal” social lives due to a lack of energy. This symptom also prevents those diagnosed from regularly attending an in-person peer support group. One post on r/Cystic Fibrosis wrote “sometimes I wish we could all live in a big ass mansion, and be there for each other. Because no matter how much they care or want to help, no one else really understands this feeling. And occasionally it’d be nice to just sit next to a kindred spirit and not have to say or explain anything…but just to know” (Weird-Persimmon4598, 2023). Although not in a physical setting, r/CysticFibrosis fits this user’s description of a space designated for those diagnosed with the disease, allowing peer support in the form of encouragement and relatability to be only a moment away for its users, despite their physical limitations and limited energy. In a physical setting, like an in-person peer support group, flare ups and worsening symptoms may keep some participants from joining. In contrast, this online Shared Journeys 13 community and similar ones enrich the lives of users by creating these virtual spaces where users can interact without feeling limited by their symptoms.
Implications
Through the analysis of r/CysticFibrosis and the analysis of several past case studies of similar online communities for chronic disease patients, this study found that online support groups for such audiences enrich the lives of users through fostering far-reaching and interactive communities. In this study’s analysis of r/CysticFibrosis, this enrichment could be found in the group’s proficiency in promoting accessible spaces, instant connections, and the discussion of shared experiences for users. By determining the usefulness of this subreddit and similar ones in enhancing the lives of users, this study substantiates these forums as valid resources for those suffering from chronic disease. This finding goes against previously accepted stigma of online communities being unreliable sources for information, especially topics in health
Limitations
This research found that online peer support groups for chronic diseases are effective in enriching the lives of users through fostering far-reaching and interactive communities for those with diagnoses that would traditionally promote isolation and fear. Although the findings of this study are promising for future usage of these virtual communities, the lack of user feedback is a major limitation that must be addressed in future research. To best understand how r/CysticFibrosis enriches the lives of diagnosed users, a survey targeted towards active users should be utilized. This survey, which would be shared on the forum, would allow participants to reflect on how r/CysticFibrosis impacts their life. Due to a lack of time, this study was unable to incorporate such a survey. In future research on online communities, such sources would be highly encouraged.
Conclusion
Through the analysis of r/CysticFibrosis and the analysis of several past case studies of similar online communities for chronic disease patients, this study found that online support groups for such audiences enrich the lives of users through fostering far-reaching and interactive communities. In this study’s analysis of r/CysticFibrosis, this enrichment could be found in the group’s proficiency in promoting accessible spaces, instant connections, and the discussion of shared experiences for users. By determining the usefulness of this subreddit and similar ones in enhancing the lives of users, this study substantiates these forums as valid resources for those suffering from chronic disease. This finding goes against previously accepted stigma of online communities being unreliable sources for information, especially topics in health