Abstract
Background
Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time.
Methods
A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers’ well-being.
Results
Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health.
Conclusions
Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.
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Data availability
Dataset available upon request.
Code availability
Available upon request.
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NIH/NCI 5R01CA196576.
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M.D.T. and L.A.S. conceived of the presented idea, M.W.G. completed the statistical modeling and analysis, M.D.T. lead writing with co-writers M.W.G. and L.A.S.
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Approval to perform the study obtained from the institutional review board, IRB # HM13074.
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Informed consent was obtained from all participants IRB # HM13074.
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Consent to publish was obtained IRB # HM13074.
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The authors declare no competing interests.
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Primary cancer caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary cancer caregivers reported improvements in mental health over time that was associated with improvements in physical health.
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Thomson, M.D., Wilson-Genderson, M. & Siminoff, L.A. The presence of a secondary caregiver differentiates primary cancer caregiver well-being. Support Care Cancer 30, 1597–1605 (2022). https://doi.org/10.1007/s00520-021-06544-8
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DOI: https://doi.org/10.1007/s00520-021-06544-8