Chronic Support is an online group support intervention to create bonding and future-focused narrative opportunities for patient-caregiver relationships of over 155 million Americans who suffer from chronic illnesses and the over 30 million caregivers supporting them.
Support groups are scientifically proven to be effective models for managing chronic disease. Online applications are scientifically proven to be helpful in self-managing chronic illness. Yet, we don't often see ways for chronic illness care providers and people with chronic illness to connect with and mutually understand one another, when that can be one of the most important relationships for the health of both the patient and caregiver. Because people with chronic illness struggle to get outside of their homes sometimes, an online support network in which they could connect with care providers more regularly on an affordable basis could be helpful.
I have been researching what chronic illness patient-informal caregiver support already looks like and what I'm seeing is that there is little focus on building relationships and mutual understanding between both parties. There is a Dignity Therapy approach for patients and medical caregivers that focuses on making meaning of the end of life process for people with terminal illness, but I'm interested in helping people shape their future stories once they get diagnosed with a chronic life-altering disease, as well as helping informal caregivers who didn't expect their lives to be changed.
For one of my MSW projects and a 5-year plan thereafter, my goal is to create an online support group for people with chronic illness as well as a group for caregivers. My goal is to first understand what support means to both parties in order to create an intervention that works for both. This research will then help me create a 5-year plan in which I can possibly create an online support system with video chatting for people with chronic illness as well as caregivers. The fundraising goal is to get funding for the site and developers, as well as therapists.
I will be fundraising specifically for:
A website developer to create a video chat platform, which will amount to about $10,000.
To involve participants to test the site, I would like to offer $20 gift cards for about 5-10 participants, which would amount to about $200.
I also need to consider being able to afford a therapist weekly to run the group once we launch the site, but with my MSW, I plan to run one support group once a week for the site and if it is a success, I will expand beyond that. I'd like to raise funds for participants in the early stages to participate for free, including rent for an office in LA as well as funding for a social media rep, and scholarships for people to participate for free. Total, this may amount to $66,200 with a stretch goal of $80,000 for seed funding.
Here's how I've been taking action:
--I've been researching patient-caregiver communication and collaboration styles around managing illness for my thesis project at CSUN.
--I've been setting up a VERY BETA site chronicsupport.org which has yet to be built out.
--I am identifying possible tech folks to work with on creating video chat interfaces, as well as chronic illness resource collaborators for the site.
--My goal is to test out a Google Chat interface with 5 dyads of patient-caregivers using a Dignity Therapy based line of questioning within the next few months-a year to see if this intervention helps people shape positive stories that can support a more future-focused outlook on their patient-caregiver relationships.
How can you support? Take a look at my crowdfunding campaign or website. Offer feedback. I'd like to dedicate my time to this once I finish my MSW in May! Help me shape my chronic illness story to be more focused on the positives and help me help others do the same.