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Toward Engaging Caregivers: Inclusion in Care and Receipt of Information and Training among Caregivers for Cancer Patients Who Have Been Hospitalized

Journal of Cancer Education volume 36, pages 611–620 (2021)Cite this article

Abstract

Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient’s hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving’s (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was “being shown how to do a skill by a qualified person” (67%) followed by “performing a skill while a qualified person watches” (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.

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Funding

This research was funded by the National Cancer Institute: Contract No: HHSN261201800054M; Project title: “Cancer caregiving in the U.S.: characterization of care recipient hospitalizations and medical/nursing skills training.” Data for this study is attributed to the National Alliance for Caregiving (www.caregiving.org) and AARP (www.aarp.org) for their “Caregiving in the U.S. 2105” report.

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Affiliations

  1. Department of Public Health, College of Health Sciences, Arcadia University, Brubaker Hall 214, 450 S. Easton Rd, Glenside, PA, 19038, USA

    M. L. Longacre

  2. Greenwald and Associates, Washington, DC, USA

    L. Weber-Raley

  3. Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    E. E. Kent

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  1. M. L. Longacre
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  2. L. Weber-Raley
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  3. E. E. Kent
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Correspondence to M. L. Longacre.

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Longacre, M.L., Weber-Raley, L. & Kent, E.E. Toward Engaging Caregivers: Inclusion in Care and Receipt of Information and Training among Caregivers for Cancer Patients Who Have Been Hospitalized. J Canc Educ 36, 611–620 (2021). https://doi.org/10.1007/s13187-019-01673-5

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  • DOI: https://doi.org/10.1007/s13187-019-01673-5

Keywords

  • Caregiving
  • Cancer
  • Hospitalizations and cancer