Inclusion of Caregivers in Veterans’ Care: A Critical Literature Review

Abstract

More direct inclusion of informal caregivers (i.e., family, friends) in patients’ care will make care more patient- and family-centered and has the potential to improve overall quality of care for patients. We need to understand what potentially comprises “inclusive care” so that we can define what “inclusive care” is and develop targets for care quality metrics. We conducted a critical literature review to identify key components of “caregiver inclusion.” Focusing on extant literature from 2005 to 2017, 35 papers met inclusion criteria. Directed content analysis with constant comparison was used to identify major themes related to a concept of “inclusive care.” Our analysis indicates that “inclusive care” entails five components: clear definition of caregiver role, system level policies for inclusion, explicit involvement of caregiver, provider assessment of caregiver capability, and mutuality in caregiver–provider communication. We discuss the evidence behind these five components using the Donabedian health care quality conceptual model.

Conceptual Framework for Integrating Family Caregivers Into the Health Care Team: A Scoping Review

“…A review conducted in 2020 in the context of including care partners in veterans’ care suggests that inclusive care entails a clear definition of the care partner’s role, system-level policies for inclusion, explicit involvement of care partners, provider assessment of care partner capability, and mutuality in care partner–clinician communication (Boucher et al, 2021). Although we find consistency within our reviewed articles, our findings reveal a need for future research that specifically considers the role of the care team in acknowledging care partners, adapting to additional team members, and attending to tools, technologies, and interventions to support caregivers and their participation in health care visits.…”

Family Caregiver and Provider Perspectives on Inclusive Care

“…We sought to gather diverse perspectives from providers with different roles and from different clinical settings and disciplines. 16 Twenty-four providers participated in the telephone-based interviews between May and November of 2018; interviews lasted 30 minutes on average. A semistructured interview guide was used to elicit provider perspectives on the meaning of and experiences with inclusive care and barriers and facilitators to inclusive care.…”

“…35 The Elizabeth Dole Foundation and the Department of Veterans Affairs (VA) are working to address these structural challenges within the VA health care system. Specifically, the Campaign for Inclusive Care-an initiative funded by United Services Automobile Association (USAA) insurance and implemented by the Elizabeth Dole Foundation and the VA 16,36 -intends to shift perspectives and the "culture of care" within the VA health care system towards one that is more inclusive of caregivers.…”

Family Caregiving for People with Cancer and Other Serious Illnesses

“…This program convened a strategy meeting with scores of different types of providers and collected data from caregivers and providers to define the key components of care, which includes caregivers as part of the care team. Based on multiple perspectives garnered through caregiver interviews and surveys and from providers, inclusive care requires five key components (Boucher et al, 2021;Sperber et al, 2019):…”

“…Van Houtven commented that the definition of inclusive care is inviting the caregiver to participate in shared decision making and treatment planning (Shepherd-Banigan et al, 2021). According to caregivers, the key barriers to inclusion are a lack of time by the medical staff to "deal" with the caregiver; the attitude that caregivers are not providers, so they do not need to know any details; legal or privacy concerns; and frequent changes in the composition of the health care team.…”