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Roughly one in 10 Americans are affected by a rare disease. That number further compounds when accounting for the individual rare features that can present in a single disease, thus making an even more sizable impact on the overall population in the US. Living with a rare disease or caring for a loved one with one can often feel isolating. With limited access to medical professionals who are well-versed in the specifics of rare conditions, many individuals turn to disease-related support groups (DRSGs), especially those on social media, to gather information, share experiences, exchange advice, and seek emotional support. These groups, often centered around specific conditions, provide invaluable spaces where participants can connect with others who understand their unique struggles.
Rare diseases are often characterized by limited awareness, long diagnostic odysseys, and a lack of readily available resources. Patients and families are often unable to find others who truly understand their struggles. Traditional in-person support groups can be geographically limiting, since some patients may be the only person in their region–or even country–with their particular disease. Social media groups therefore offer a way for individuals to connect across vast distances. These online communities allow people to share personal stories, gain emotional support, and exchange medical knowledge in real-time.
However, while social media has the potential to connect, it also comes with challenges. The very nature of rare diseases means that information is limited, scattered, and partial. Adding to this challenge, the content found on these platforms may be inaccurate or unhelpful. This raises the question: How can DRSGs be improved to better meet the needs of patients and their families?
A recent interview study, led by Dr. Tom Doyle, explores how social media-based support groups can be optimized to better serve patients and families navigating rare and undiagnosed diseases. The study, titled “Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study with Patients and Parents of Children with Rare and Undiagnosed Diseases,” highlights the unique needs and perspectives of patients and parents involved in online support groups in hopes of minimizing the fragmentation of information among a multitude of social media platforms.
The study’s findings offer several important takeaways for improving social media-based support groups:
- Need for Accurate and Trustworthy Information: One of the most frequently mentioned challenges was the difficulty in finding reliable, evidence-based information within these groups. Participants expressed concern over misinformation, especially when it came to medical advice or treatment recommendations. Many asked for the creation of verified spaces where trusted professionals could provide guidance and support.
- Emotional Support Is Crucial: Beyond medical information, emotional support was highlighted as one of the most valuable aspects of these communities. Parents of children with rare and undiagnosed diseases emphasized the importance of connecting with others who truly understand the emotional toll of their experiences. For parents juggling the demands of caregiving with their own mental health needs, burnout and emotional exhaustion can become serious concerns. These interactions offer solidarity, validation, and a sense of connection that is hard to find elsewhere while helping reduce feelings of isolation.
- Navigating Group Dynamics: While these groups were generally seen as supportive, some participants noted challenges around group dynamics, such as the potential for oversharing, overwhelming information, or members who weren’t always empathetic. Ensuring that moderators and administrators are equipped to foster a safe, respectful environment is key to maintaining a positive experience for all members.
- Customization and Personalization: Rare diseases are as diverse as the people who suffer from them, and participants expressed a desire for more personalized experiences within these groups. Tailoring content to their specific needs—such as focusing on particular conditions, symptoms, or treatment options—could help make the information more relevant and actionable.
- Accessible and Easy-to-Use Platforms: Some individuals pointed out that navigating many social media platforms was difficult, especially for those who may not be as tech-savvy. Making these platforms more user-friendly—especially for older patients or parents less familiar with digital tools—could improve overall engagement and accessibility.
Despite these challenges, many of our participants found DRSGs to be a lifeline–one even literally saying such a group saved her life–by providing connections, information, and emotional support that would otherwise be difficult to access. However, there is clearly room for improvement. By incorporating better moderation, fostering more focused discussions on specific diseases and treatments, and offering resources for emotional well-being, social media platforms can become even more powerful tools for those navigating the complex and often isolating experience of living with or caring for rare diseases. Addressing these concerns could help individuals and families affected by rare and undiagnosed diseases find critical connection, support, and empowerment in their online communities. With the right adjustments, advocates can develop these spaces into even more supportive, informative, and compassionate environments for their users.
This study demonstrates social media’s capacity to offer meaningful support to those facing rare diseases and the crucial role these platforms can play in fostering a sense of community, compassion, and shared knowledge.
This blog was written in reference to:
Doyle TA, Vershaw SL, Conboy E, Halverson CME. Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases. JMIR Hum Factors 2024;11:e57833 doi: 10.2196/57833
Direct link: https://humanfactors.jmir.org/2024/1/e57833/
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