The problem: understanding the needs of caregivers
Caregivers are usually the partners, children, or other relatives of a person with lung cancer. They often help people living with lung cancer better understand their disease, perform daily tasks, and manage the complex emotional struggles that come with diagnosis and treatment. However, caregivers have their own complex feelings and experiences upon learning their loved one is ill. We know that lung cancer has far reaching effects, beyond the individual who is diagnosed. It's time to better understand the unique needs and challenges caregivers face in the co-survivorship experience.
The International Caregiver Survey
The International Caregiver Survey is an approximately 20-minute survey to understand the experiences of people who help care for people with lung cancer. For the purposes of this survey, a caregiver means:
- A person who helps a family member or friend who has been diagnosed with lung cancer.
- Caregiving is not a part of the person’s employment, and the caregiver is not paid for the help they provide.
- A person does not have to be living with a person with lung cancer.
- Caregiving encompasses many different healthcare tasks, including, but not limited to:
- Managing medications and symptoms
- Coordinating services
- Taking care of household tasks like shopping and cooking, lawn maintenance, and house cleaning.
- Managing medications and symptoms
The survey focuses on the caregivers’ mental health and well-being, coping mechanisms, cultural differences, as well as managing the financial obligations of the person with lung cancer’s care. The survey also looks to explore the different ways that caregivers find and define value during their caregiving experience.
How can you help?
Anyone who has cared for a person with lung cancer, either now or in the past, is eligible to complete the survey, which is part of the global Lung Cancer Registry. The survey is available in 5 languages: English, Spanish, French, German, and Simplified Chinese. Participants who are actively involved with caregiving will be asked to complete a survey every 6 months to capture changes in their experiences.
To participate, you’ll first need to join the Lung Cancer Registry:
If you are new to the Lung Cancer Registry:
- Visit go2.org/registry and click “Join Now.”
- Answer the eligibility questions. If you qualify, you’ll be shown a consent form explaining the study and how your information will be kept safe.
- After agreeing, complete a brief profile and access the International Caregiver Survey in your dashboard.
If you already have a Lung Cancer Registry account:
Log in to your Registry account and look for the International Caregiver Study in your dashboard. You may see other studies you're eligible for as well.
GO2 for Lung Cancer’s involvement
This research is being done by GO2 for Lung Cancer’s Global Lung Cancer Registry. GO2 staff are directly involved with all aspects of the study from designing the survey, enrollment, engagement, analyzing the data, and sharing the results of the study with the lung cancer community.