Cancer Caregiver Research

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                                                           MyLifeLine Cancer Caregiver Research Study
                                                Conducted in partnership with the University of Colorado

                                                       caregiver couple

Caregivers play a large role in the adequate and accurate treatment of cancer patients and thus may influence patient outcomes. Yet the role of a caregiver can have a significant impact on their own physical, emotional and mental health.

MyLifeLine partnered with researchers at the University of Colorado and utilized Qualtrics software to recruit more than 460 cancer caregivers to learn more about their perceived social support, quality of life, distress and self-efficacy. The goal of the study was to better understand their needs and how MyLifeLine can support the cancer caregiver population. The study was open to all cancer types and stages, and participants were required to have been an active cancer caregiver in the past five years, over the age of 19 and living in the United States.

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Health of Cancer Caregivers:

  • 20% of caregivers reported their health was “poor” or “fair”
  • 24% stated their diet was “poor” or “fair”

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Hope and Meaning in Cancer Caregiving:

  • Hope and the presence and search for meaning have strong relationships to psychological resilience
  • Those who spend more time in the caregiver role have higher rates of resilience

Stress Associated with Logistical Tasks of Cancer Caregiving:

  • 58% of caregivers rated ‘Managing patient side effects’ as Very to Extremely Stressful
  • 57% of caregivers rated ‘Managing finances’  as Very to Extremely Stressful
  • 52% of caregivers rated ‘Gathering information regarding available resources’ as Very to Extremely Stressful
  • 50% of caregivers rated ‘Gathering medical information’  as Very to Extremely Stressful
  • 48% of caregivers rated ‘Communicating status updates’  as Very to Extremely Stressful
  • 45% of caregivers rated ‘Managing medication schedules’  as Very to Extremely Stressful
  • 44% of caregivers rated ‘Providing rides to medical visits’  as Very to Extremely Stressful
  • 43% of caregivers rated ‘Managing chores’  as Very to Extremely Stressful
  • 38% of caregivers rated ‘Managing meal preparation’  as Very to Extremely Stressful

Psychosocial Distress of Cancer Caregiving:

  • 58% of caregiving time (weekly) was spent on managing patient side effects and finances.
  • 41% of caregivers perceived their overall stress in the “high stress” range
  • Caregivers reported the most distress in the following life domains: finances, concerns over the state of the patient, impact on the caregiver’s schedule, caregiver family support and  personal relationships
  • Caregivers reported the least distress in the following life domains: concerns over personal state, quality of personal environment, caregiver’s personal outlook on life, caregiver health, caregiver self-esteem and  concerns over the quality of care the patient is receiving
  • Caregivers reported significantly higher rates of anxiety, depression and sleep disturbance than the average US population

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Cancer Caregiver Stress by Cancer Type and Role:

  • Caregivers of patients with lung cancer reported greater levels of stress related to logistical tasks than caregivers of patients with breast cancer, gastrointestinal and blood cancers
  • Parents of patients reported more stress related to the logistical demands of caregiving than spouses or friends who were caregivers

Online Cancer Caregiver Support

  • 69% of the total sample indicated that they currently use an online tool to help communicate to friends and family
  • Caregivers who reported using an online communication tool were significantly younger than those who do not use an online communication tool
  • Caregivers who use an online communication tool had significantly higher levels of emotional and instrumental support when compared to those who do not use an online communication tool

Abstracts and Presentations:

The Quantitative Association between Hope, Meaning and Psychological Resilience (PDF)

The Quantitative Association between Hope, Meaning and Psychological Resilience in a National Sample of Caregivers of Patients with Cancer (American Psychosocial Oncology Society APOS, 2017)

Changing Tides in Research (PDF)

Changing Tides in Research: Use of Online Participant Recruitment to Examine Cancer Caregivers’ Distress. (American Psychosocial Oncology Society APOS, 2017)

 

We are proud to work with researchers at the University of Colorado Denver to bring you this study

University of Colorado Denver



Thank you to our caregiver research study partners

Celgene Amgent    

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