Reluctance to Care: A Systematic Review and Development of a Conceptual Framework

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Primary lay carers are increasingly important in the care of patients with cancer, but their role can be complex and extended. Potential carers may feel anything from highly committed to not at all interested in caregiving, but powerful social norms pressure them to accept the role, and reluctance may be hidden to avoid censure. The purpose of this review was to gain insights into caregiving reluctance and its consequences. The findings were organized into 4 major dimensions: demographic, physical, psychological, and social. Three major outcomes were identified: deterioration in the carer-patient relationship, reduced quality of care, and institutionalization. Definitive answers to the review questions remain elusive. Choice seems to be a major indicator of caregiving reluctance, although reluctance may not remain static over the caregiving trajectory. Caregiving reluctance remains an underexplored topic, particularly in the context of cancer.

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