The International Caregiver Survey is a ~20 minute survey to understanding the experiences of people who help care for people with lung cancer.  For the purposes of this survey, a caregiver means:

  • They help a family member or friend who has been diagnosed with lung cancer
  • Caregiving is not a part of their employment, and they are not paid for the help they provide
  • Caregiving can include many different activities. Some examples might be health care tasks like managing medications and symptoms or coordinating services. Other examples might include household tasks like shopping and cooking, lawn maintenance, and house cleaning.
  • You do not have to live with the person to be considered a caregiver

The survey focuses on the caregivers’ mental health and well-being, coping mechanisms, cultural differences, financial contributions to their loved one’s care, and the different ways that caregivers find and define value during their caring for a person living with lung cancer.

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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 five languages: English, Spanish, French, German, and Simplified Chinese.  Participants who are actively involved with caregiving will be asked to complete a survey twice over 6 months to capture changes in their experiences.

To participate in the International Caregiver Survey, please join the Lung Cancer Registry. After you have signed up and completed the Informed Consent Form, if you picked during registration that your relationship to the person diagnosed with lung cancer was anything other than “Self”, you will automatically be presented with the survey.

“Maybe the single best thing we can do for a caregiver is listen to their experiences and then prioritize the development of interventions so that we can make it a more supported experience.”

– Jamie L. Studts, PhD, Professor of Medical Oncology and Scientific Director of Behavioral Oncology at the University of Colorado School of Medicine

International Caregiver Survey Working Group:

Andrew Cuipek, PhD, GO2 for Lung Cancer
Anne-Marie Baird, PhD, LuCE
Jacinta Wiens, PhD, MS, GO2 for Lung Cancer
Jamie Studts, PhD, University of Colorado Cancer Center
Joelle Fathi, DNP, RN, ARNP, ANP-BC, CTTS, University of Washington
Kent Smith, B.S., MBA, University of Washington School of Nursing
Kristin Richeimer, BS, International Association for the Study of Lung Cancer

The international caregiver study is supported by Novartis.

Maureen Rigney, LICSW, GO2 for Lung Cancer
Miranda Goff, LICSW, GO2 for Lung Cancer
Nick Dionne-Odom, PhD, RN, ACHPN, FPCN, FAAN, The University of Alabama at Birmingham
Roslyn Spruit, Committee Member
Tara Bowman, O’Neal Comprehensive Cancer Center