The Caregiver Protocol: A framework for integrating caregiver psychological health as a measured variable in post-acute neurological care

Post-acute neurological care pathways end at discharge; recovery does not. Informal caregivers deliver much of post-acute neurological rehabilitation at home, during the period of greatest neuroplastic change, with no clinical monitoring of their own condition and no recognition of that condition as a determinant of patient outcome. This concept note sets out The Caregiver Protocol: a framework integrating assessment of the caregiver’s own psychological health at three defined points in the post-acute neurological pathway — discharge, thirty days, and ninety days — using instruments already validated and in clinical use, recorded alongside the patient’s clinical file, and determining the tier of support assigned. The note assembles the evidence basis for the framework: three independent cohorts linking caregiver psychological distress to patient mortality in stroke (adjusted OR 3.57 for caregiver anxiety, n=765), neurodegenerative disease (adjusted HR 1.49 per standard deviation, n=176 dyads, independent of dementia severity) and disabled older adults (n=1,262); one randomised trial establishing that an intervention delivered to caregivers delays patient institutionalisation; and an emerging neuroimaging literature reporting neurobiological correlates of caregiving strain. The Protocol has not been validated, piloted or evaluated, and no outcome data are presented. The note is deposited as a dated record of the framework and its evidence basis, ahead of a full position paper and a companion international Delphi consensus study.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-10-16
DOI
https://doi.org/10.5281/zenodo.23418321
Primary Topic
Nursing care and research
Type
article
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article

The Caregiver Protocol: A framework for integrating caregiver psychological health as a measured variable in post-acute neurological care

Andra Bria
Zenodo (CERN European Organization for Nuclear Research)
Nursing care and research
article

The Caregiver Protocol: A framework for integrating caregiver psychological health as a measured variable in post-acute neurological care

Andra Bria
article en

Abstract

Post-acute neurological care pathways end at discharge; recovery does not. Informal caregivers deliver much of post-acute neurological rehabilitation at home, during the period of greatest neuroplastic change, with no clinical monitoring of their own condition and no recognition of that condition as a determinant of patient outcome. This concept note sets out The Caregiver Protocol: a framework integrating assessment of the caregiver’s own psychological health at three defined points in the post-acute neurological pathway — discharge, thirty days, and ninety days — using instruments already validated and in clinical use, recorded alongside the patient’s clinical file, and determining the tier of support assigned. The note assembles the evidence basis for the framework: three independent cohorts linking caregiver psychological distress to patient mortality in stroke (adjusted OR 3.57 for caregiver anxiety, n=765), neurodegenerative disease (adjusted HR 1.49 per standard deviation, n=176 dyads, independent of dementia severity) and disabled older adults (n=1,262); one randomised trial establishing that an intervention delivered to caregivers delays patient institutionalisation; and an emerging neuroimaging literature reporting neurobiological correlates of caregiving strain. The Protocol has not been validated, piloted or evaluated, and no outcome data are presented. The note is deposited as a dated record of the framework and its evidence basis, ahead of a full position paper and a companion international Delphi consensus study.

Zenodo (CERN European Organization for Nuclear Research)
University of Bern (CH)
Good health and well-being
Openalex Percentile: Top 7%
Nursing care and research
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