To improve your experience on Lilly TrialGuide, please use the latest version of Chrome, Firefox, Safari, or Internet Explorer, with JavaScript enabled.
This website is not optimized for your browser, as configured.
Collaboration

Family Caregivers: Dynamic Partners in Research

Family Caregivers Dynamic Partners in Research Feature Image

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.

  1. 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.

  1. 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 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.

Blog post originally appeared on LillyPad.

Tags: Caregivers,

Recent Articles

ListenToTheYouthVoiceForPatientCentricPediatricDrugDevelopment FeatureImage 21Sept2020-01

Listen to the youth voice for patient-centric pediatric drug development

LTGBlogAuthors LillyGuestAuthorIcon 20July2018
Lilly Guest Author
September 24th, 20204 minute read

The patient voice is critical for successful clinical research, for people of all ages. Learn how Lilly’s partnership with iCAN helps us include that voice in research.

LeapingIntoDecentralizedClinicalTrials FeatureImage 16Sept2020-01

Leaping into Decentralized Clinical Trials

LTGBlogAuthors GuestAuthorIcon 20July2018
Guest Author
September 17th, 20203 minute read

Before starting medical school, Iman Mahoui joined Lilly’s Decentralized Trials team. She reflects on how new approaches to research can help address social justice and health equity issues.

MasterProtocol FeatureImage 14July2020-01

Platform Trials and Master Protocols: A New Approach to Clinical Research

Leigh Anne Naas Headshot
Leigh Anne Naas
August 18th, 20205 minute read

Learn more about platform trials and master protocols, an alternative model to how we conduct clinical research.

FindingTreatmentsTogether1 FeatureImage 22July2020

Finding Treatments Together: Part I

Leigh Anne Naas Headshot
Leigh Anne Naas
July 27th, 20205 minute read

Watch the first video in CISCRP's "Finding Treatments Together" series for a helpful outline of the clinical research process and what motivates people to participate.

10ThingstoKnowaboutClinicalTrialsAdapted FeatureImage 14Jun2019-01

10 Clinical Trial Facts You Should Know

Leigh Anne Naas Headshot
Leigh Anne Naas
July 22nd, 20201 minute read

If you’re a participant or caregiver looking for clinical trial information, it can be helpful to start with a basic overview. The infographic below provides 10 clinical trials facts you need to know.