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Caregivers: Join the Cancer Experience Registry at CancerExperienceRegistry.org

Cancer patients often rely on their relatives or friends in many ways throughout their cancer experience.

These relatives or friends who provide such care are commonly referred to as “family caregivers.” For many, caregiving is a role willingly taken on.Yet, a growing body of evidence shows that providing family care is often not without strain to a caregiver’s own quality of life.

In general, caregivers report poorer quality of life and greater distress compared to those not providing care. And, compared to other caregiving contexts, providing care to someone with cancer is highly involved in terms of tasks performed and the amount of hours of care provided. The Research and Training Institute (RTI) recognizes that caregivers are impacted by and contribute to the cancer experience and currently has undertaken two initiatives to hear these voices.

Understanding the Voice of Caregivers

The Cancer Experience Registry

To fully understand the caregiver experience, we have added a caregiver-specific component to the Cancer Experience Registry, an online initiative to capture the social and emotional experiences of those affected by cancer.

To fully understand the caregiver experience, we have added a caregiver-specific component to the Cancer Experience Registry, an online initiative to capture the social and emotional experiences of those affected by cancer. Based on guidance from a National Advisory Council of experts in caregiving, including researchers, clinicians and caregivers, we developed a survey of important questions to understand the strains and benefits of caregiving. Some topic areas for this survey include caregiving roles, the direct and indirect costs of caregiving, emotional response, access to resources, caregiving self-efficacy and receipt of caregiving training.

This collective voice will assist in developing programs for caregivers. These findings will also inform future research and drive policy efforts for community and social change to benefit caregivers. We present findings at conferences and through academic journals to reach policymakers and clinicians. Most importantly, we also prioritize providing the caregivers themselves with findings from the Registry via a monthly newsletter and a yearly report.

Cancer Support Source—Caregivers

The Cancer Support Community, through the Research and Training Institute, is also currently developing and implementing a distress screening and referral program for caregivers. This program is called CancerSupportSource—Caregivers (CSS—Caregivers), and was initially based on the validated CancerSupportSource® program for patients impacted by cancer. We invited caregivers into all stages of the development of CSS—Caregivers.

We first conducted focus groups with caregivers to uncover the primary responsibilities and stressors of caregiving. This process helped to identify that caregivers were concerned about:

  • Their own self-care
  • Caregiving roles and responsibilities
  • The patient’s symptoms and experience

We formulated questions based on these themes and conducted cognitive interviews to gauge understanding of CSS—Caregivers. We are currently conducting a validation study so that we can identify the effectiveness of CSS—Caregivers compared to standardized distress measures. Caregivers are currently enrolling in this research through 10 collaborating CSC affiliate sites, with a goal of reaching 300 caregivers.

Knowing the important but difficult work of caregiving, we strive to develop evidence-based programs to reduce or alleviate distress as well as assist caregivers in voicing their experience toward positive change.