Building capacity in health systems with and for caregivers: a scoping review

Abstract

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.