Presentation (CTI)

OBJECTIVES: Stakeholders are increasingly interested in capturing perspectives of both care recipients and caregivers. Currently, there is a potential gap in understanding how well caregiver outcome tools assess experiences considered important and relevant to the experience of caregiving. To understand this gap, existing tools were reviewed to determine the extent to which they comprehensively measure key concepts of caregiver burden.
METHODS: Caregiver assessments were identified through a targeted literature search (August 2024) using Ovid MEDLINE, PsycINFO, and Embase databases and supplemented with searches in Google Scholar and the PROQOLID database. A list of questionnaires assessing the burden of caring for individuals directly from caregivers, was compiled, and 12 were subject to review and evaluation based on frequency of use within the literature. Information on each questionnaire’s development, structure, and conceptual coverage were extracted. Conceptual coverage, the focus of the present inquiry, was evaluated against 117 key caregiver impact concepts spread across 18 unique domains that were identified in a previous literature review focused on identifying the individual impact concepts and domains associated with caregiver burden.
RESULTS: Among evaluated questionnaires, length ranged from seven to 28 items with most (n=7) having 20+ items. When compared to the domains identified as important to caregivers through a previous literature review, ten, nine, and eight questionnaires assessed emotional, physical, and family or friend relationship impacts, respectively, and only one assessed >50% of those caregiver burden domains. Example domains frequently not assessed by the questionnaires though reported as important to caregivers include impact on autonomy/independence, social activities, and household responsibilities.
CONCLUSIONS: Results suggest that available tools often do not assess the concepts considered relevant and important to caregivers. There is a need for a new tool to capture the universal burden of caregiving which can quantify burden agnostically across different types of care recipients and caregivers.