StreamYourCare Interviews
The following insights would not be possible without the generosity, wisdom, and bravery of our community and guests. We have plenty more interviews on the way, follow our guests accounts to stay up to date with their journeys in the meantime.
Guests
Dana (Caregiver) | SteamyBiscuit | GucciMula160 | EddieMancuso
Brian Jones | IllenialWheeler | Myah Richards | Core Insights
Dana
US Healthcare Industry Insights from a Caregiver (Interview)
Insights
Client Dedication: Provide long-term care for clients, staying with them for many years until their passing. Aim to build strong relationships that may lead to being named in wills.
Engaging Patients with Cognitive Impairments: Use puzzles, games, and matching games as tools for engaging patients with memory issues. Find these items at garage sales for affordability. Utilize the Montreal Cognitive Assessment (MoCA) test for assessing Alzheimer’s and dementia patients, and consider sourcing materials from garage sales.
Outdoor Activities: Emphasize the importance of outdoor activities, such as walks, visits to the park, or simply sitting outside. These activities can be uplifting for patients, especially those who may feel confined indoors. Involve patients in activities like baking or cooking, tailoring the tasks to their abilities and preferences.
Structured Schedules in Facilities: Implement structured schedules that include time for outdoor activities and exercise for patients in facilities. Ensure flexibility in these schedules, particularly when weather conditions are unfavorable.
Ethical Concerns: Be aware of the prevalence of elder abuse, including physical and financial abuse by caregivers and family members. Advocate for the use of cameras in homes to protect vulnerable individuals and encourage families to adopt this practice.
Challenges in Facilities: Maintain a high standard of care in facilities by addressing neglect, understaffing, and lack of proper training for staff. Avoid locking patients in their rooms due to fire hazards. Address high turnover rates among staff by ensuring adequate compensation to improve patient care.
Advocacy for Clients: Actively intervene when witnessing mistreatment or neglect. Report concerns to authorities and ensure the well-being of clients.
SteamyBiscuit
SteamyBiscuit's Channels
YouTube Twitch TikTok
Insights
The Transformative Power of Assistive Technology: Utilize assistive technology like the quad stick to reconnect with passions, such as video games. Recognize the significant impact these tools can have on empowering individuals with disabilities to pursue their passions and live more fulfilling lives.
Mastering and Sharing Knowledge: Dedicate time to mastering assistive devices by thoroughly understanding their capabilities. Invest effort into learning, such as reading manuals and practicing regularly. Create tutorials and actively participate in online communities to provide guidance and support to others.
Streaming for Enjoyment and Connection: View streaming as an enjoyable activity rather than a primary source of income. Prioritize personal enjoyment and genuine interaction with the audience over chasing large viewership numbers. Maintain a positive and enjoyable streaming experience for both the streamer and the audience.
Importance of Social Connections and Community Support: Find value in online communities like Discord to connect with individuals who share similar passions and understand personal experiences. Seek out supportive communities to share ideas, offer encouragement, and foster a sense of belonging. Recognize the importance of social interaction, even in a virtual setting, for maintaining well-being and combating feelings of isolation.
GucciMula
The Importance of Peer Support, Accessibility Tech, and Living Your Truth as a Quadriplegic
GucciMula's Channels
Twitch YouTube Kick TikTok
Insights
Gaming as Therapy and Escape: Recognize the therapeutic value of gaming as a way to cope with depression and escape into another world. Use gaming to help overcome depression and find happiness.
The Importance of Community and Peer Support: Understand the significance of community and peer support for people with disabilities, particularly those with spinal cord injuries. Connect with others who understand the challenges and experiences to provide a sense of belonging, understanding, and shared experience. Join support groups to find a safe space to talk about anything without judgment.
Advocating for Inclusive Game Design: Advocate for greater inclusivity in game design. Encourage game developers to consider the needs of gamers with higher-level spinal cord injuries who rely on assistive technology like the QuadStick. Push for more research and development to create gaming experiences accessible to everyone.
Spreading Awareness and Challenging Perceptions: Spread awareness about spinal cord injuries and challenge common misconceptions. Avoid judging others based on appearances or assumptions. Showcase achievements to challenge the perception that people with disabilities are incapable or limited.
Living Life to the Fullest: Emphasize the importance of living life to the fullest despite facing numerous challenges. Share experiences of traveling, attending events, and pursuing passions. Encourage others with disabilities to strive for a fulfilling life, stressing that a disability does not define a person.
The Power of Honesty and Owning Your Narrative: Be open about personal experiences and find the courage to share your journey. Highlight the importance of honesty, both with oneself and others, as a crucial step in personal growth and connecting with others authentically.
EddieMancuso
@EddieMancuso x StreamYourCare Interview
EddieMancuso's Channels
TikTok
Twitch
Insights
Shawn Anderson (@EddieMancuso/@ta51722) has been sharing his medical journey online. Shawn has Ankylosing Spondylitis (AS), a rare and severe form of arthritis that causes him constant pain. He describes the pain like rubber bands pulling down on his shoulders. Due to his bedsores, he is unable to take most of the medications for his AS.
Anderson began livestreaming while hospitalized for bedsores/ulcers. He found that TikTok in particular provided a therapeutic outlet and helped him cope with the chaos and trauma of his experience. However, he was eventually banned from the platform, which left him feeling lost and distraught.
The hospital staff were not receptive to Shawn's livestreaming, claiming it violated HIPAA regulations. They insisted he turn his stream off, or to put it away when they entered his room. Shawn believes this was in part retaliation for a negative Google review he posted about the facility.
Shawn emphasizes the importance of having an advocate present during hospital stays, as he witnessed many patients who weren't properly cared for because they lacked someone to speak up for them. He expresses frustration with the healthcare system, particularly with what he perceives as the overprescribing of drugs and the influence of pharmaceutical companies. He advocates for patients to be informed and to ask questions during each step of the process to recovery.
Despite the challenges he has faced, Shawn remains optimistic and finds solace in his online community. He expresses gratitude for the support he has received from his viewers and emphasizes the importance of kindness. He believes that people should strive to be a positive force in the world and find ways to help each other.
Brian Jones
The Importance of Social Media Advocacy, Monitoring, Faith, and Mental Strength in Nursing Homes
Brian's Channels
TikTok
Insights
Brian Jones (@BrianJones2702) uses social media platforms like TikTok to share his experiences in Georgia nursing homes and advocate for improved care for residents. Confined to a bed after an accident at age 44, Jones became acutely aware of the negligence and abuse occurring around him. He notes he had plenty of time to observe what was happening, as his only time out of his room was for physical therapy twice a week, and nurses gossiped about him and other patients at the nurses station just 10 feet from his room door.
Brian has documented multiple instances where nurses were belligerent, intoxicated, and negligent. According to Jones, the nursing home prioritized filling beds over providing quality care. He believes that many issues stem from a lack of teamwork and respect among staff members. For example, he criticizes unit managers and those in charge of supplies and scheduling for not assisting CNAs when they are short-staffed.
Jones' advocacy through platforms like TikTok caught the attention of 11Alive news, who interviewed him and aired a story on the conditions he described. A day after the story aired, he was discharged from the facility he had been staying at for several years. One of his videos even reached the Georgia Stage Capitol through a follower's daughter who showed it to congressmen during a livestream. Jones advocates for keeping loved ones at home with home healthcare services whenever possible, as he believes that is the best way to ensure their well-being. However, for those situations where nursing home care is unavoidable, he suggests to check up on those you know being treated, or the conditions they may face could take a turn for the worse.
Illenialwheeler
Illenialwheeler x StreamYourCare x University of Chicago UX Interview
IllenialWheeler's Channels
Twitch YouTube X (Twitter)
We had such a blast speaking with @Illenialwheeler. Lenni will always remain in our minds and hearts, he is a blessing to this world, check out his streams here.
Insights
The Transformative Power of Streaming: Recognize the profound impact streaming can have on one’s life, offering a sense of purpose, joy, and connection. Use streaming and tools like the quad stick to reconnect with gaming, providing a renewed sense of passion and fulfillment. Utilize streaming to cope with depression and mental health challenges, engaging with viewers and building a community to improve quality of life.
Advocating for Accessibility and Normalizing Disability: Advocate for increased accessibility within the gaming and streaming communities. Showcase the possibilities of gaming with a disability, demonstrating that limitations don’t have to define someone. Inspire others with disabilities to explore streaming and gaming, emphasizing the availability of tools and supportive communities. Promote open discussions about disability to normalize these conversations, foster understanding, and encourage inclusivity.
The Importance of Community and Authentic Connections: Value the profound impact of community on the streaming journey. Recognize that meaningful connections can arise from shared interests and understanding, even in the digital realm. Form friendships with other streamers and viewers, considering them like family. These relationships offer support, encouragement, and a sense of belonging, contributing significantly to a positive streaming experience. Acknowledge the crucial role of moderators and long-time viewers in fostering a positive and supportive community atmosphere.
Caregiving as a Complex Dynamic: Understand the complexities of caregiving, including navigating power dynamics, establishing trust, and maintaining boundaries. Express gratitude for supportive caregivers while acknowledging the difficulties of encountering neglectful individuals and the emotional toll of those experiences. Recognize the intimate nature of caregiving and the close bonds that can form, making it challenging when a caregiver-client relationship ends.
Advocating for Improved Platform Features and Support: Encourage streaming platforms like Twitch to enhance their support for streamers with disabilities. Identify the need for improved discoverability features to enable streamers from marginalized communities to reach wider audiences. Suggest implementing tools and strategies to increase the visibility of streamers with disabilities, making it easier for them to connect with appreciative viewers. Highlight the potential benefits of developing platform-integrated tools that enhance safety and accessibility, such as voice-activated commands, emergency alert systems, and features that improve the chat experience for streamers and viewers alike.
MyahRichards
MyahRichards' Channels
TikTok
Insights
Fundraising and Disability Awareness: Focus on creating content about personal experiences as a young disabled woman and actively use the platform to raise funds for respite care. Prioritize fundraising and disability awareness over traditional engagement strategies like storytelling or extensive chatting with viewers.
Addressing Accessibility Challenges on TikTok: Advocate for essential accessibility features on TikTok, such as a built-in text-to-speech feature, chat moderation tools, and options to pin comments. Highlight the difficulties in engaging with the audience effectively and managing live streams independently due to these limitations.
Improving Platform Support for Disabled Creators: Suggest that TikTok improve its platform by offering better ID verification options for creators with disabilities, developing more robust accessibility features, and creating tools that facilitate fundraising and community engagement.
Building a Sense of Community: Connect with other disabled creators who share similar experiences and challenges to foster a sense of belonging and support.
Importance of Accessible Support Systems: Rely on caregivers for assistance with content creation due to platform accessibility limitations. Highlight the need for accessible support systems to empower individuals with disabilities to pursue their passions.
Core Insights
Connecting with Audience
- Care streamers find immense value in connecting with their audience and fostering a sense of community.
- Interacting with viewers provides a sense of purpose and fulfillment.
Engaging and Building Relationships
- Opportunities to engage with others, share stories, and build relationships with people who understand their experiences are highly valued.
- Online communities like Discord, GoogleForums, Reddit play a vital role in connecting care streamers and providing mutual support.
Advocacy and Awareness
- Streaming serves as a powerful tool for advocacy and raising awareness about disabilities and chronic illnesses.
- Care streamers challenge misconceptions, share personal journeys, and advocate for greater accessibility and inclusion.
Accessibility Challenges
- Unique challenges related to accessibility and platform limitations are faced by care streamers.
- There is a need for features that enhance accessibility, such as improved voice control options, customizable chat moderation tools, and more inclusive account verification processes.
Financial Sustainability
- Financial sustainability remains a significant concern for many care streamers.
- Reliable and transparent monetization options are needed to support care streamers in balancing content creation with managing their health and well-being.
Assistive Technology
- Assistive technology plays a transformative role in enabling care streamers to pursue their passions.
- Devices like the QuadStick empower individuals with limited mobility to engage with digital content, highlighting the need for ongoing innovation in assistive technology.