What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

Patient Educ Couns. 2022 Jul;105(7):1722-1730. doi: 10.1016/j.pec.2021.10.012. Epub 2021 Oct 23.

Abstract

Objectives: The cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.

Methods: A scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.

Results: 119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.

Conclusion: Most caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.

Practice implications: Clinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.

Keywords: Caregiver burden; Caregivers; Clinical competence; Education; Learning; Neoplasms; Psycho-Oncology; Self-management.

Publication types

  • Review
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Caregivers* / psychology
  • Humans
  • Neoplasms* / therapy
  • Psychosocial Support Systems
  • Quality of Life