Mapping Caregiver Needs’ Assessment Tools for Family and Friend Caregivers: A Rapid Scoping Review

TL;DR

This study reviews tools used to assess the needs of family and friend caregivers, finding that many fail to capture what caregivers actually need and are not well-integrated into healthcare systems.

Contribution

The study identifies gaps in current caregiver needs’ assessment tools and outlines necessary features for effective, system-integrated caregiver-centered care.

Findings

Existing tools often measure stress or burden rather than explicitly asking caregivers what support they need.

Few tools are designed for workflow integration, longitudinal use, or EMR documentation.

Seven key domains of caregiver-defined support needs were identified, but some are rarely assessed.

Abstract

Public health relevance—How does this work relate to a public health issue?
Family and friend caregiving is a widespread public health issue affecting population wellbeing, service access, and health system capacity.When caregivers are not routinely identified and their support needs are not assessed, unmet needs can contribute to caregiver health decline, reduced participation in work/social roles, and avoidable care crises and system use.

Family and friend caregiving is a widespread public health issue affecting population wellbeing, service access, and health system capacity.

When caregivers are not routinely identified and their support needs are not assessed, unmet needs can contribute to caregiver health decline, reduced participation in work/social roles, and avoidable care crises and system use.

Public health significance—Why is this work of significance to public health?
This review shows that many “needs assessment” tools do not consistently measure caregiver-defined support needs and are rarely designed for workflow integration, longitudinal reassessment, or Electronic Medical Record documentation.These gaps limit equitable, routine caregiver support across settings and transitions, and the findings clarify what tool features are needed to operationalize caregiver-centered care at scale.

This review shows that many “needs assessment” tools do not consistently measure caregiver-defined support needs and are rarely designed for workflow integration, longitudinal reassessment, or Electronic Medical Record documentation.

These gaps limit equitable, routine caregiver support across settings and transitions, and the findings clarify what tool features are needed to operationalize caregiver-centered care at scale.

Public health implications—What are the key implications or messages for practitioners, policy makers and/or researchers in public health?
Practitioners and policy makers should use and embed tools that explicitly ask caregivers what support they need and ensure results trigger follow-up actions (referral/navigation), supported by workflow and EMR documentation.Researchers should develop and test tools for implementation outcomes (workflow fit, responsiveness over time, equity impacts, and whether assessment leads to supports).

Practitioners and policy makers should use and embed tools that explicitly ask caregivers what support they need and ensure results trigger follow-up actions (referral/navigation), supported by workflow and EMR documentation.

Researchers should develop and test tools for implementation outcomes (workflow fit, responsiveness over time, equity impacts, and whether assessment leads to supports).

Background: Family and friend caregivers provide essential support across health and social care systems but remain inconsistently identified, assessed, and supported in routine practice. Although numerous caregiver needs’ assessment instruments exist, many focus on burden, distress, or preparedness rather than explicitly eliciting caregiver-defined support needs, limiting their utility for care planning, care transitions, and system integration. Methods: We conducted a rapid scoping review to identify and characterize caregiver needs’ assessment tools developed for family and friend caregivers. Searches were conducted in MEDLINE, PsycINFO, CINAHL, Web of Science, Health and Psychosocial Instruments, and the Cochrane Library. Eligible studies described the development, validation, or implementation of instruments designed to assess caregiver needs. Data were extracted on tool characteristics, domains assessed, administration methods, and implementation-relevant features. Item-level content analysis distinguished caregiver-defined support needs from related constructs, including burden, strain, preparedness, and care-recipient monitoring. Results: Forty-three studies describing caregiver needs’ assessment instruments were included (19 instruments; 17 instrument families). Tools varied widely in length, administration, and conceptual framing. Seven domains of caregiver-defined support needs were identified: caregiver health and self-care; emotional and psychological support; information, communication, and navigation; practical and instrumental support; social and relational support; autonomy and life participation; and spiritual, cultural, and existential support. Information and navigation needs were most frequently assessed, while autonomy and spiritual domains were least consistently represented. Many instruments demonstrated construct drift, assessing stressors or impacts rather than explicitly eliciting caregiver-defined support needs. Few tools were designed for longitudinal reassessment, workflow integration, or documentation within electronic medical records. Conclusions: Existing caregiver needs’ assessment tools inadequately support routine, system-integrated caregiver-centered care. Advancing caregiver-centered practice requires tools that explicitly elicit caregiver-defined support needs and are designed for workflow integration, longitudinal use, and interdisciplinary care pathways.

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