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

J. Nicholas Dionne-Odom, Wendy Demark-Wahnefried, Richard A. Taylor, Gabrielle B. Rocque, Andres Azuero, Aras Acemgil, Michelle Martin, Meka Astin, Deborah Ejem, Elizabeth Kvale, Karen Heaton, Maria Pisu, Edward E. Partridge, Marie A. Bakitas

Research output: Contribution to journalArticle

8 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)2437-2444
Number of pages8
JournalSupportive Care in Cancer
Volume25
Issue number8
DOIs
StatePublished - Aug 1 2017

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Self Care
Caregivers
Self Efficacy
Neoplasms
Decision Making
Anxiety
Depression
Quality of Life
Interpersonal Relations
Mental Health
Health
Growth
Medicare
Spouses
Sleep
Neck
Cross-Sectional Studies
Head
Exercise
Lung

All Science Journal Classification (ASJC) codes

  • Oncology

Cite this

Dionne-Odom, J. N., Demark-Wahnefried, W., Taylor, R. A., Rocque, G. B., Azuero, A., Acemgil, A., ... Bakitas, M. A. (2017). The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Supportive Care in Cancer, 25(8), 2437-2444. https://doi.org/10.1007/s00520-017-3650-7

The self-care practices of family caregivers of persons with poor prognosis cancer : differences by varying levels of caregiver well-being and preparedness. / Dionne-Odom, J. Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A.; Rocque, Gabrielle B.; Azuero, Andres; Acemgil, Aras; Martin, Michelle; Astin, Meka; Ejem, Deborah; Kvale, Elizabeth; Heaton, Karen; Pisu, Maria; Partridge, Edward E.; Bakitas, Marie A.

In: Supportive Care in Cancer, Vol. 25, No. 8, 01.08.2017, p. 2437-2444.

Research output: Contribution to journalArticle

Dionne-Odom, JN, Demark-Wahnefried, W, Taylor, RA, Rocque, GB, Azuero, A, Acemgil, A, Martin, M, Astin, M, Ejem, D, Kvale, E, Heaton, K, Pisu, M, Partridge, EE & Bakitas, MA 2017, 'The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness', Supportive Care in Cancer, vol. 25, no. 8, pp. 2437-2444. https://doi.org/10.1007/s00520-017-3650-7
Dionne-Odom, J. Nicholas ; Demark-Wahnefried, Wendy ; Taylor, Richard A. ; Rocque, Gabrielle B. ; Azuero, Andres ; Acemgil, Aras ; Martin, Michelle ; Astin, Meka ; Ejem, Deborah ; Kvale, Elizabeth ; Heaton, Karen ; Pisu, Maria ; Partridge, Edward E. ; Bakitas, Marie A. / The self-care practices of family caregivers of persons with poor prognosis cancer : differences by varying levels of caregiver well-being and preparedness. In: Supportive Care in Cancer. 2017 ; Vol. 25, No. 8. pp. 2437-2444.
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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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AU - Demark-Wahnefried, Wendy

AU - Taylor, Richard A.

AU - Rocque, Gabrielle B.

AU - Azuero, Andres

AU - Acemgil, Aras

AU - Martin, Michelle

AU - Astin, Meka

AU - Ejem, Deborah

AU - Kvale, Elizabeth

AU - Heaton, Karen

AU - Pisu, Maria

AU - Partridge, Edward E.

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N2 - 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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