Caregiver burden in the context of hospital-at-home: protocol for a rapid review of literature

Objective: This review aims to synthesise recent evidence on the burden borne by informal caregivers in the context of hospital-at-home, and on the associated experience of stress, strain, overload and exhaustion. Secondary objectives are to identify the factors that increase or attenuate this burden, to catalogue the instruments used to measure it together with the consistency between measured and narrated burden, and to identify avenues for caregiver support.

Introduction: Hospital-at-home is expanding rapidly across high-income health systems based on randomised evidence of clinical non-inferiority for selected populations. This displacement of the site of care redistributes surveillance, symptom interpretation, treatment administration and coordination work to family and informal caregivers, whose capacity is routinely assessed as part of the eligibility decision, making their burden a question about the viability and equity of the model and not solely about their wellbeing. Existing syntheses have addressed perceived service quality and the experience of care in general terms, while effectiveness reviews have treated caregiver burden as a secondary outcome and reported mixed findings without interrogating why. None has taken caregiver burden as its primary object while integrating qualitative and quantitative evidence.

Inclusion criteria: This review will consider studies of informal caregivers reporting on burden and related constructs including strain, burnout, stress, overload, exhaustion and lived experience, in the context of hospital-substitutive hospital-at-home delivered as admission avoidance or early supported discharge, including palliative and end-of-life care at home. Peer-reviewed qualitative, quantitative and mixed-methods studies published between 2016 and 2026 will be eligible, with or without a conventional-hospitalisation comparator. Studies of exclusively paid caregivers, studies that do not distinguish the caregiver's perspective, studies of long-term home care not substituting for hospital admission, ambulatory primary care, telemonitoring without hospital-level care, residential facilities, and studies reporting satisfaction alone will be excluded, together with editorials, commentaries, conference abstracts, frameworks and case studies; existing secondary reviews will not be synthesised as primary data but will be used for citation chasing and contextualisation.

Methods: PubMed/MEDLINE and Web of Science Core Collection will be searched with no language filter. Following Cochrane rapid review guidance, both reviewers will independently screen a calibration sample of 25% of titles and abstracts to align application of the criteria before proceeding to screen all titles and abstracts, and both will assess eligibility at full text and verify all full-text exclusions, with disagreements resolved by discussion or by a third reviewer. Data will be extracted by one reviewer using a standardised form. Methodological quality will be appraised using the Mixed Methods Appraisal Tool (2018), and studies will not be excluded on their quality rating alone. A convergent integrated mixed-methods synthesis will be undertaken, combining thematic synthesis of qualitative findings with qualitisation of quantitative results, followed by mapping of statements from both strands to identify convergences, complementarities and discordances. Findings will be presented as summary tables of study characteristics, a thematic matrix and a narrative organised by objective, with reporting compliant with PRISMA standards.

Keywords: hospital-at-home; informal caregivers; burden