Presentation (CTI)

OBJECTIVES: The burden of caring for individuals with health conditions can have a tremendous impact on caregivers. Yet, the impacts of caregiving are often not well understood, let alone quantified. While treatment outcomes ought to focus on patient benefit, there is value in understanding the caregiver experience, including how treatments can reduce caregiver burden and enhance sustainability in the caregiver role. Our aim is to better understand the burden and associated impacts of the caregiver experience from the perspective of the literature.
METHODS: A concept-focused literature review was conducted in August 2024 using pre-defined search terms using Ovid MEDLINE, PsycINFO, and Embase databases, plus supplemental searches using Google Scholar, to identify abstracts focused on the burden and impact of caregiving across caregiver groups. Abstracts were screened using pre-defined inclusion and exclusion criteria and selected full-text articles were analyzed to identify the concepts of caregiver burden. Once identified, these concepts were described and organized by domain within a conceptual model.
RESULTS: The literature search yielded 236 abstracts and 26 articles for full-text review. Each of the reviewed articles featured qualitative data collected from interviews from a broad range of conditions and caregiver groups, producing 117 caregiver impact concepts across 18 unique domains. These concepts were organized and presented in a caregiver conceptual model with the most frequently reported caregiver impact concepts being anxiety/worry (n=19/26, 73%), depression (n=10/26, 38%), stress (n=9/26, 35%), and limited participation in social activities (n=9/26, 35%).
CONCLUSIONS: Results suggest that across caregiver groups the burdens of caregiving are significant. Caregivers can be negatively impacted in many ways including emotionally, physically, socially, and financially. As holistic approaches evolve to better support both care recipients and caregivers, these results can be used by stakeholders to better understand the caregiver experience and, ultimately, identify, select, or develop assessments to measure those experiences in clinical research.