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The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness

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Abstract

Purpose

Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers’ own individual self-care practices. We explored differences in caregivers’ discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy.

Methods

Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy.

Results

Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients’ spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes <$50,000 (53.8%). Most provided support 6–7 days/week (71%) for >1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values < .05). Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy.

Conclusions

A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

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Acknowledgments

This study was funded by a University of Alabama at Birmingham (UAB), Center for Palliative and Supportive Care PREP Grant (PI: Dionne-Odom) and was conducted under the auspices of a UAB Comprehensive Cancer Center, Centers for Medicare and Medicaid Services Health Care Innovation Challenge demonstration project (PI: Partridge). Dr. Dionne-Odom is supported by the NIH/NINR (1K99NR015903), the National Cancer Institute (2R25CA047888-24), the National Palliative Care Research Center, and the American Cancer Society (RSG PCSM–124668). Dr. Demark-Wahnefried receives support from the NIH/NCI UAB Cancer Center Core Grant (5 P30 CA13148). Dr. Rocque is funded by a Frommeyer Fellowship in Investigative Medicine. Dr. Bakitas is funded by the NIH/NINR (R01NR013665) and the American Cancer Society (RSG PCSM-124668). The authors would like to thank Ms. Julie Schach, Program Manager and staff of the UAB Recruitment and Retention Shared Facility for administration and oversight of the survey study. The authors would also like to acknowledge all participating Patient Care Connect medical centers including: the UAB Comprehensive Cancer Center (Birmingham, AL), Marshall Medical Center (Albertville, AL), Memorial Hospital (Chattanooga, TN), Fort Walton Beach Medical Center (Fort Walton Beach, FL), Gulf Coast Regional Medical Center (Panama City, FL), Southeast Alabama Medical Center (Dothan, AL), Northeast Alabama Regional Medical Center (Anniston, AL), and Mitchell Cancer Institute (Mobile, AL).

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Authors and Affiliations

  1. School of Nursing, University of Alabama at Birmingham (UAB), 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA

    J. Nicholas Dionne-Odom, Richard A. Taylor, Andres Azuero, Meka Astin, Deborah Ejem, Karen Heaton & Marie A. Bakitas

  2. Department of Nutrition Sciences, UAB, 1675 University Blvd, Birmingham, AL, 35233, USA

    Wendy Demark-Wahnefried

  3. UAB Comprehensive Cancer Center, 1824 6th Avenue South, Birmingham, AL, 35233, USA

    Gabrielle B. Rocque & Edward E. Partridge

  4. Department of Preventive Medicine, UAB, 1720 2nd Avenue South, Birmingham, AL, 35294, USA

    Aras Acemgil & Maria Pisu

  5. Department of Preventive Medicine, University of Tennessee Health Science Center, 66 N. Pauline Street, Memphis, TN, 38163, USA

    Michelle Y. Martin

  6. Department of Medicine, Division of Geriatrics, Gerontology, and Palliative Care, UAB Center for Palliative and Supportive Care, 1720 2nd Avenue South, Birmingham, AL, 35294, USA

    Elizabeth Kvale & Marie A. Bakitas

Authors
  1. J. Nicholas Dionne-Odom
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  2. Wendy Demark-Wahnefried
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  3. Richard A. Taylor
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  4. Gabrielle B. Rocque
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  7. Michelle Y. Martin
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  8. Meka Astin
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  9. Deborah Ejem
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  10. Elizabeth Kvale
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  11. Karen Heaton
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  12. Maria Pisu
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  13. Edward E. Partridge
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  14. Marie A. Bakitas
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Corresponding author

Correspondence to J. Nicholas Dionne-Odom.

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Conflict of interest

The authors declared that they have no conflict of interests. Dr. Dionne-Odom has full control over data for this study and has made it subject to review by Supportive Care in Cancer.

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Dionne-Odom, J.N., Demark-Wahnefried, W., Taylor, R.A. et al. The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25, 2437–2444 (2017). https://doi.org/10.1007/s00520-017-3650-7

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  • DOI: https://doi.org/10.1007/s00520-017-3650-7

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