The large representation of and focus on caregivers in COLONTOWN offers a unique opportunity to better understand caregivers’ involvement in treatment decision making and care delivery as well as related gaps in support. As such, we conducted a survey in May 2024 to provide these insights to inform future engagement with caregivers by us and others in the CRC universe.
Topics included:
359 caregivers provided extremely valuable responses for which we are very grateful. We presented some of the results in a poster at ASCO Quality Care Symposium 2024 and are continuing to use the insights for our work. Here are all the responses to one of the 33 questions that is featured above.
We focus on a different survey response from a caregiver to the question:
“Are there aspects of your role as a caregiver that you feel are often overlooked or underestimated?”
This perpetually reminds us of how immense the challenge of being a caregiver is and motivates us to keep focused EVERY DAY on our intention to improve the experience of our caregivers as much as of our patients.
We hope it can also encourage others in the cancer world to do the same and help caregivers know they are not invisible nor alone.
Are there aspects of your role as a caregiver that you feel are often overlooked or underestimated?
“So much! People who have not been in our position can not really understand the level of burden (even if I was more than willing to do it) that goes into being a primary caregiver. The normal daily tasks of living do not stop like laundry, childcare, making a living – in fact we often have to pick up even more slack on those things, then in addition we add an almost full time job of researching treatments and side effects, managing medications, managing care, and being the go-to for check-ins and information sharing. Then there is the constant low level terror of the unknown as the backdrop for all of this. Self care takes a backseat because time is a luxury, so our sleep, fitness, physical and mental health take a beating.”
Email us at [email protected] and let us know!
Almost half of our COLONTOWN community is made up of caregivers who are active in all of our treatment, clinical trials, special topics, spiritual neighborhoods and geographic crews.
We also have a vibrant caregiver-specific community within COLOTOWN that is exclusively for caregivers to connect with other caregivers.
Our neighborhoods include:
Caregiving
Loss and grief
Colontown Junior (families of pediatric patients)
All of our disease-specific resources are available to you as we know you play a vital role for your patient. Find many of these in COLONTOWN University including our Caring for Caregivers Resource Fair.
Caregivers are a vital part of our team and participate in all program development. Join COLONTOWN here!
