Building capacity in health systems with and for caregivers: a scoping review
4 affiliations
- 1Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, Toronto, Canada
- 2Institute for Better Health, Trillium Health Partners, Mississauga, Mississauga, Canada
- 3Institute for Health Policy, Management and Evaluation, University of Toronto, Toronto, Toronto, Canada
- 4Library & Knowledge Services, Trillium Health Partners, Mississauga, Mississauga, Canada
Abstract
Objective: The objective of this scoping review was to identify what is reported in the literature on the formal inclusion of caregivers on care teams within health systems by exploring how caregivers are identified, engaged and what roles they play.
Design: Scoping review.
Data sources: Six electronic databases (Ovid Medline, Ovid Embase, Ovid PsycINFO, Clarivate Web of Science, Ebsco CINAHL and ProQuest Dissertations & Theses Global) were originally searched on 18 November 2024, with an updated search conducted on 26 February 2026.
Eligibility criteria: Articles were included if they: included an informal caregiver, involved the caregiver as part of the care team as an implemented practice and were peer-reviewed papers or a dissertation/thesis.
Data extraction and synthesis: Following team consensus, titles and abstracts were screened by a single reviewer and the full-texts were double-screened. All disagreements were resolved through consensus. The data were extracted using a standardised data extraction form and synthesised descriptively.
Results: 104 articles were included in this scoping review. Caregivers were more frequently included as members of the care team for certain populations (eg, paediatrics, end of life, dementia/cognitive impairment) and in certain settings (eg, intensive care units, palliative care). Caregivers were involved in shared decision-making processes and care planning discussions with team members. They also provided direct patient care and supported information-sharing. Few studies provided details on how caregivers were initially identified.
Conclusions: Changing the culture of care to include caregivers on the care team is not only a shift in practice but a shift in power. Organisations need to support healthcare teams to embed formalised practices for caregiver identification and inclusion as a standard of practice; otherwise, caregivers will continue to be included largely by default (early and end of life) and primarily in cases of complex illness.
Related
- Building capacity in health systems with and for caregivers: A photovoice protocol
- Climate and health capacity building for climate-resilient health systems: a case study of the ASPHER-GCCHE European course
- Climate and health capacity building for climate-resilient health systems in Europe, 2025
- AI-driven governance of student status and academic credentials in higher education and capacity building for public health education management
- Building public health capacity: evaluating the intermediate Field Epidemiology Training Program of Papua New Guinea
BibTeX
@article{cadel2026building,
title = {{Building capacity in health systems with and for caregivers: a scoping review}},
author = {Lauren Cadel and Susan Palijan and Arija Birze and Antonia Giannarakos and Michelle Marcinow and Danielle Jacobson and Kerry Kuluski},
journal = {BMJ Open},
year = {2026},
month = oct,
doi = {10.1136/bmjopen-2026-124431},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-124431},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Building capacity in health systems with and for caregivers: a scoping review
AU - Lauren Cadel
AU - Susan Palijan
AU - Arija Birze
AU - Antonia Giannarakos
AU - Michelle Marcinow
AU - Danielle Jacobson
AU - Kerry Kuluski
PY - 2026
DA - 2026/10/27
JO - BMJ Open
DO - 10.1136/bmjopen-2026-124431
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-124431
AB - Objective: The objective of this scoping review was to identify what is reported in the literature on the formal inclusion of caregivers on care teams within health systems by exploring how caregivers are identified, engaged and what roles they play. Design: Scoping review. Data sources: Six electronic databases (Ovid Medline, Ovid Embase, Ovid PsycINFO, Clarivate Web of Science, Ebsco CINAHL and ProQuest Dissertations & Theses Global) were originally searched on 18 November 2024, with an updated search conducted on 26 February 2026. Eligibility criteria: Articles were included if they: included an informal caregiver, involved the caregiver as part of the care team as an implemented practice and were peer-reviewed papers or a dissertation/thesis. Data extraction and synthesis: Following team consensus, titles and abstracts were screened by a single reviewer and the full-texts were double-screened. All disagreements were resolved through consensus. The data were extracted using a standardised data extraction form and synthesised descriptively. Results: 104 articles were included in this scoping review. Caregivers were more frequently included as members of the care team for certain populations (eg, paediatrics, end of life, dementia/cognitive impairment) and in certain settings (eg, intensive care units, palliative care). Caregivers were involved in shared decision-making processes and care planning discussions with team members. They also provided direct patient care and supported information-sharing. Few studies provided details on how caregivers were initially identified. Conclusions: Changing the culture of care to include caregivers on the care team is not only a shift in practice but a shift in power. Organisations need to support healthcare teams to embed formalised practices for caregiver identification and inclusion as a standard of practice; otherwise, caregivers will continue to be included largely by default (early and end of life) and primarily in cases of complex illness.
SN - 2044-6055
SN - 2044-6055
ER -