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Family Caregivers: Dynamic Partners in Research
Tweetfest: a two-week tweeting frenzy hosted by our #WhyWeDoResearch friends across the pond. From researchers and site staff to advocacy groups and patients, the 2017 event brought together folks from across the health care spectrum to discuss and share insights on a variety of research topics. We were honored to not only participate, but to host our own chat on a subject close to our hearts—the role of family caregivers in research. Here are three of our favorite takeaways from the caregiver chat—and a request for your input!
1. The Caregiver Role is Multifaceted and Evolving
Caregiver. Carer. Caretaker. Friend. These were all words mentioned by chat participants to describe a person supporting a loved one with a chronic illness. Others added that many caregivers don’t even use that term to describe themselves. The way people define the caregiver role demonstrates its inherently dynamic nature. The things caregivers do are equally varied: beyond providing physical and emotional support, people said caregivers serve as a sounding board for making treatment decisions, a reminder notice, an extra set of eyes, an educator and an interpreter. By the end of the chat, it was clear that there are no limits to how one person can care for another facing an illness.
A1: Caregivers can be anyone providing care! Friends, family, fellow patients. I say the more the merrier #whywedoresearch— Candace (@RareCandace) May 25, 2017
They can help researchers understanding (based on experience) how challenging caring for the critically ill can be. #whywedoresearch— Renata K. Louwers (@RenataLouwers) May 25, 2017
2. Caregivers are—and Should be Recognized as—Legitimate Care Team Partners
After a diagnosis, a patient and caregiver embark on a journey together. Like many journeys in life, a patient will meet many people, find themselves at crossroads—forced to make tough decisions—and run into obstacles along the way. Caregivers often play the role as a trusted partner at each step along the road, and should be recognized as a legitimate member of the care team. This means being involved in shared decision making conversations about treatment options, including the clinical research process, and have their stories heard.
Q3: Include caregivers as "trial partners" & allow them to give feedback in a legitimate research role. #whywedoresearch— Jeri Burtchell (@FingoHead) May 25, 2017
3. Caregivers Need Support Too
Who supports the caregiver? What resources do caregivers need to maintain their own health as a priority? These two questions were on my mind during the chat, and remain so today. As one participant points out, if the caregiver’s health is at risk, so is that of the loved one they are working tirelessly to support.
Caregivers have responsibilities and obligations in other aspects of their lives that make time an invaluable resource. Bringing empowering resources to them, wherever they are, is a must. With that in mind, we asked the participants for their input on what resources would be useful as part of our new caregiver-dedicated Lilly TrialGuide page (currently in the works). Their responses pointed to two key areas: logistical information and community.
How much flexibility will we have in making appointment times? That seems trivial, but it's a big deal.— ALS Advocacy (@alsadvocacy) May 29, 2017
How about you? What resources for family caregivers do you find most helpful? Feel free to share in the comments below or via Twitter on @LillyTrials. We'd love to hear from you. And who knows: We may include your suggestions in the new caregiver webpage.
Thank you to everyone who participated in the tweet chat for openly sharing your caregiving stories and insights! Tweetfest may be over, but the dialogue around the role of caregivers and the support they need continues. We’ll be hosting another caregiving tweet chat soon—stay tuned to @LillyTrials for more information.