Research Article - (2025) Volume 20, Issue 1

VIEWS OF MEDICAL STAFF AND FAMILY PHYSICIANS ON ASSISTING FAMILY CAREGIVERS IN PRIMARY CARE NETWORKS: SYSTEMATIC REVIEW

Introduction

Family caregivers play an indispensable role in managing chronic diseases, often providing 70% to 90% of care for individuals experiencing frailty, chronic conditions, or disabilities within the community (Benton & Meyer, 2019). They are recognized as essential contributors to long-term care efforts. A family caregiver is broadly defined as an individual-typically unpaid—who offers emotional, physical, or practical assistance to someone with physical or mental health challenges, disabilities, or age-related needs. As chronic illnesses and age-related impairments progress, caregiving responsibilities intensify. Advances in medical care, longer life expectancies, shorter hospital stays, and the transition to community-based care over the last two decades have made caregiving increasingly complex and enduring (Burridge et al., 2017). Concurrently, demographic shifts, changes in family structures, evolving gender roles, and healthcare reforms have increased the demand for caregiving while straining the availability of family caregivers (6,7,8). Despite these challenges, caregivers continue to provide support but face growing care demands and prolonged caregiving commitments (Afram et al., 2015).

The demanding nature of caregiving significantly impacts caregivers' mental and emotional health. Compared to those who do not provide care, caregivers report elevated levels of anxiety, depression, stress, and emotional strain. Caregiver stress levels are on the rise. For instance, in 2016, one-third (33.3%) of caregivers supporting individuals receiving home care reported experiencing stress, a notable increase from 15.6% in 2010. This situation has worsened in the aftermath of the COVID-19 pandemic (Bauer & Sousa-Poza, 2015). Notably, caregiving itself is not inherently stressful; it is the excessive burden of care that leads to distress. Caregivers most at risk for health issues and even premature death are those living with the care recipient, providing more than 20 hours of care weekly, and supporting individuals with severe impairments, dementia, depression, or challenging behaviours (Carduff et al., 2014).

Primary care providers, including family physicians and their teams, are uniquely positioned to identify caregivers, evaluate their wellbeing, and connect them with the necessary resources throughout the caregiving journey. Continuity of care in primary care settings is recognized for its positive health outcomes. However, healthcare systems worldwide have often concentrated on preparing caregivers to care for others without adequately equipping healthcare professionals to assist and support caregivers effectively (Carers UK, 2019). Caregivers are frequently marginalized within healthcare systems that prioritize patients' health, autonomy, and privacy. Most healthcare professionals do not routinely assess caregivers' health, abilities, or willingness to provide care, nor do they provide the necessary emotional or practical support to help caregivers navigate healthcare and community systems (Collins & Swartz, 2011).

In response to these challenges, some governments have begun implementing policies aimed at caregiver support. Legislation has emerged to mandate healthcare providers to identify caregivers and assess their needs. Additionally, initiatives have been launched to encourage healthcare systems to recognize, assist, and engage family caregivers through strategic planning (Centers for Disease Control, 2018).

As healthcare providers and policymakers continue to develop strategies to support family caregivers, it is essential to understand the perspectives of medical staff teams regarding their roles in this effort. This includes examining their views on current practices, their perceptions of primary care’s capacity to support caregivers, and their recommendations for future improvements in caregiving support (Doctors of BC, 2016a).

Methods

A preliminary review of the literature on the relationship between primary care physicians and family caregivers highlighted numerous studies focused on caregivers’ perspectives of their interactions with doctors. However, studies examining physicians’ viewpoints on supporting family caregivers were notably scarce. Consequently, a scoping review was chosen over a systematic review to allow a broader investigation of the available literature rather than a detailed examination of a narrowly defined research question. A scoping review is designed to summarize and map the scope, nature, and depth of existing studies, highlighting key concepts, evidence types, and knowledge gaps relevant to a specific field (Arksey & O'Malley, 2005; Levac, Colquhoun, & O'Brien, 2010).

The methodology for this review adhered to the scoping review framework established by Arksey and O'Malley (2005), complemented by the thematic synthesis approach described by Thomas and Harden (2008). Searches were conducted in English and limited to studies published within the past decade (2009–2019). Electronic databases, including Scopus, Medline, PubMed, and CINAHL, were utilized to retrieve relevant studies using search terms related to physicians and family caregivers (Table 1 outlines the search terms). Grey literature was also explored via Google, employing Google's search optimization techniques and the same search terms (Google, ND). The review considered a wide array of sources, such as original research, systematic reviews, theoretical papers, opinion articles, and international or regional reports that discussed physicians’ perspectives on caregiver support or contextualized their roles in supporting caregivers (Table 1).

Studies were excluded if they focused solely on the perspectives of patients, caregivers, or healthcare staff regarding physicians or primary care. The initial search involved screening titles and abstracts against predetermined inclusion and exclusion criteria. Search results were imported into EndNote for managing references, and duplicates were removed. Articles remaining after this process underwent full-text review by the second author, with both the first and second authors collaboratively deciding on the final set of included studies (n = 27). Data from the selected articles were extracted and organized into a table (Table 2). In line with Arksey and O'Malley’s (2005) guidance, the quality of included studies was not assessed.

Data Analysis

Data from the selected studies were imported into NVivo for organization and analysis. The coding process involved three stages: line-by-line coding, identification of descriptive themes, and the development of analytical themes (Thomas & Harden, 2008). During the first stage, conceptual codes were generated to synthesize and connect findings across studies. In the second stage, these initial codes were organized into descriptive themes, ensuring they closely represented the content and context of the original studies. This process involved iterative checks to confirm that the themes were consistent with the data across all included studies. Finally, in the third stage, key insights were drawn from the descriptive themes by examining coding patterns and collaboratively discussing overarching narratives and relationships within the data.

Results

A total of 27 studies were included in this 10-year scoping review, meeting the established criteria. Among these, 23 originated from peer-reviewed journals, while four were from association-published grey literature. The peer-reviewed articles encompassed three examining the ethics of physicians' roles in caregiver support (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick, Leffler, & Hood, 2010), three literature reviews addressing physicians’ roles in supporting dementia caregivers (O'Connor, 2011; Robinson et al., 2011; Sunne & Huntington, 2017), and a paper describing the creation of a survey assessing physicians' perceptions of caregiving support (Bedard, Gibbons, Lambert-Belanger, & Riendeau, 2014). Additionally, this category included one policy paper (Moore, Frank, & Chambers, 2018), 12 qualitative studies (Burridge, Mitchell, Jiwa, & Girgis, 2017; Burridge, Mitchell, Jiwa, & Girgis, 2011; Carduff et al., 2014; Doekhie, Strating, Buljac-Samardzic, Bovenkamp, & Paauwe, 2018; Foley, Boyle, Jennings, & Smithson, 2017; Gill et al., 2014; Greenwood, Mackenzie, Harris, Fenton, & Cloud, 2011; Hum et al., 2014; Kiceniuk et al., ND; Krug et al., 2018; Leu, Frech, & Jung, 2018; Wang et al., 2018), and three reports on two surveys (Greenwood, MacKenzie, Habibi, Atkins, & Jones, 2010; Jones, Mackenzie, Greenwood, Atkins, & Habibi, 2012; Thyrian & Hoffmann, 2012). From grey literature, a policy paper (Doctors of BC 2016a, 2016b), two practice development guides (Doctors of BC 2016a, 2016b; Princess Royal Trust, 2011), and one survey (Skufca, 2019) were reviewed.

Among the 16 primary studies investigating physicians’ perspectives, data were collected from 800 physicians in total (range: 2–335; mean: 53, median: 13). One study (Gill et al., 2014) did not specify the number of participants. The geographical origins of the studies were Canada (n = 8), the United Kingdom (n = 6), the United States (n = 4), Australia (n = 2), Ireland (n = 2), Germany (n = 2), the Netherlands (n = 1), Switzerland (n = 1), and China (n = 1). More detailed information about these studies can be found in Table 2.

Three key themes were identified:

(a) Primary care is seen as the most suitable setting for reaching caregivers, and there is widespread acknowledgment that caregivers would benefit from targeted support.

(b) Collaborative, integrated care models are considered optimal for caregiver-centered practices.

(c) Consistently implementing caregiver support within primary care remains challenging. Facilitators and barriers to caregiver-centered care were analyzed at practice, health system, and policy levels. Subthemes derived from these overarching themes are discussed below.

Primary Care as a Strategic Point for Caregiver Support

The studies consistently highlighted the importance of primary care as an effective entry point for identifying and supporting family caregivers (mentioned in all included studies). As the first point of contact, primary care offers a valuable opportunity to provide assistance, which could improve caregiver health, enhance care recipient outcomes, and increase satisfaction with care delivery.

However, uncertainty persists regarding the precise role of physicians in caregiver support, particularly when caregivers accompany patients. For instance, Burridge et al. (2011) noted that in cancer care, both physicians and caregivers felt addressing caregiver needs was inappropriate given the severity of the patient’s condition. Similarly, Carduff et al. (2014) described physicians’ reactive rather than proactive approach to caregiver needs, with doctors often waiting for caregivers to request help.

Three ethics-focused reviews attributed this ambiguity to restrictive health delivery systems emphasizing patient-centered care and confidentiality (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick et al., 2010). While all agreed on prioritizing patient care, they argued that physicians hold ethical responsibilities toward caregivers. Gitlin and Hodgson (2016) viewed failing to support caregivers as unethical. Barnard and Yaffe (2014) suggested that caregiver health should sometimes outweigh patient preferences, whereas Mitnick et al. (2010) advocated for balanced interactions respecting patient dignity while addressing caregiver needs through validation, distress monitoring, referrals, and separate care plans.

The suggested responsibilities for primary care physicians included identifying caregivers, monitoring their mental and physical health, providing information and emotional support, and offering referrals to educational resources and services. Physician preferences for these roles varied. For example, a U.S. survey found most physician-caregiver interactions centered on medical tasks (Skufca, 2019). Dutch physicians aged over 50 preferred a more directive role (Doekhie et al., 2018), while general practitioners in the UK leaned toward offering emotional support and delegating referrals to other staff (Jones et al., 2012).

Few primary care practices offered dedicated services for caregivers. In a UK-based survey of 79 general practitioners, 73% did not respond when asked whether their practices provided caregiver-specific services (Greenwood et al., 2010; Jones et al., 2012). Only 9% provided informational materials, and another 9% maintained caregiver records.

Referring caregivers to external services was considered essential but frequently complicated by systemic issues. Physicians expressed frustration with fragmented healthcare systems and the inefficiencies of services outside their clinical responsibilities (Bedard et al., 2014; Burridge et al., 2017; Burridge et al., 2011; Doctors of BC, 2016a, 2016b; Doekhie et al., 2018; Foley et al., 2017; Greenwood & Mackenzie, 2010; Hum et al., 2014). For example, Canadian physicians cited long referral wait times and inadequacies in publicly funded services like home care (Hum et al., 2014; Kiceniuk et al., ND). Physicians suggested that non-physician team members or community organizations could more effectively educate caregivers and facilitate access to appropriate services (Burridge et al., 2017; Carduff et al., 2014; Doctors of BC, 2016b; Foley et al., 2017; Greenwood et al., 2011; Leu et al., 2018).

Advocating for Collaborative, Integrated Care Models

A collaborative, integrated care approach has been proposed as a strategy to restructure primary care to better address the needs of caregivers (Bedard et al., 2014; Burridge et al., 2011, 2017; Doctors of BC, 2016a, 2016b; Doekhie et al., 2018; Foley et al., 2017; Gill et al., 2014; Greenwood & Mackenzie, 2010; Greenwood et al., 2010; Hum et al., 2014; Jones et al., 2012; Kiceniuk et al., n.d.; Krug et al., 2018; Leu et al., 2018; Robinson et al., 2010; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). Toolkits developed by medical organizations, such as the Doctors of BC (2016a, 2016b) and the Princess Royal Trust (2011), aim to assist physicians in structuring their practices to include caregiver support.

The toolkits (Doctors of BC, 2016a, 2016b) are predicated on the assumption that primary care providers or practices are well-positioned to deliver continuous care and assistance to caregivers. Recommendations within these resources include assigning a caregiver champion, advanced practice nurse, or navigator within practices to identify and support caregivers, as well as facilitate navigation through healthcare and community resources. Enhancing connections with specialists, homecare, and community organizations is also emphasized, alongside collaborations with caregiver-focused or disease-specific organizations to promote education, support, and social engagement. Moreover, the policy document accompanying the Circle of Care: Supporting Family Caregivers in BC Toolkit (Doctors of BC, 2016a, 2016b) emphasizes the need for a unified healthcare approach. It advocates for governments and other stakeholders to collaborate on a care model that values and integrates caregivers as active partners in healthcare (p. 4).

Challenges in Establishing Comprehensive Caregiver Support in Primary Care

Realizing consistent and effective support for caregivers within primary care remains a significant challenge (Bedard et al., 2014; Burridge et al., 2011, 2017; Carduff et al., 2014; Doctors of BC, 2016a, 2016b; Doekhie et al., 2018; Foley et al., 2017; Gill et al., 2014; Greenwood & Mackenzie, 2010; Greenwood et al., 2011; Hum et al., 2014; Jones et al., 2012; Kiceniuk et al., n.d.; Krug et al., 2018; Leu et al., 2018; O'Connor, 2011; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). Krug et al. (2018) point out that expecting primary care physicians to independently restructure their already overburdened practices is unrealistic; instead, existing frameworks need to be acknowledged and adapted. Robinson et al. (2010) argue that supporting caregivers in primary care requires a systematic approach akin to managing chronic illnesses. However, they emphasize the necessity of addressing practice-level, systemic, and policy-level barriers and enablers to unlock primary care’s potential to provide comprehensive caregiver support.

Facilitators and Barriers to Caregiver-Centered Support in Primary Care

Our expanded thematic analysis provides insight into the factors that need to be addressed in order to enhance primary care physicians' and practices' ability to offer caregiver-centered care.

1. Facilitators and Barriers at the Practice Level

The inclusion of caregivers as registered patients within the practice and the establishment of practice-specific protocols were found to enhance the delivery of care for caregivers. Physicians were more willing to support caregivers when they were patients within their practice. A study in Canada showed that family physicians were more inclined to assess caregiver needs and provide support or coordinate social services when the caregiver was their patient (Bedard et al., 2014). Moreover, having a consistent caregiver-physician relationship facilitated recognition and discussion of caregiver concerns.

Establishing protocols such as appointing a designated individual to oversee caregiver care, implementing checklists, and creating patient-centered policies contributed to more consistent support. Adopting a person-centered approach where caregivers are recognized as essential partners in the care process benefited both caregivers and patients (Doctors of BC, 2016a, 2016b; Princess Royal Trust, 2011). However, several practice-level barriers hindered caregiver support. Caregivers often fail to self-identify or seek help, which complicates physicians' efforts to offer support (Burridge et al., 2017; Carduff et al., 2014). In the US, physicians cited multiple caregivers or lack of caregiver identification as major obstacles to providing adequate support (Skufca, 2019). Furthermore, caregivers tend to focus on the needs of the care recipient and may overlook their own well-being, which prevents physicians from addressing their health concerns unless caregivers initiate the conversation (Burridge et al., 2011).

Education regarding the role, stressors, and contributions of caregivers is often lacking among physicians, leading to varied findings regarding their preparedness. In a UK study, 89% of GPs expressed feeling inadequately trained, and 47% lacked confidence in addressing caregivers' needs (Greenwood et al., 2010; Jones et al., 2012). However, in a survey of US primary care providers, 82% expressed interest in working with caregivers, and 73% felt confident in supporting them (Skufca, 2019).

Another significant barrier was insufficient reimbursement for the time spent with caregivers, especially when the caregiver is not the patient (Bedard et al., 2014; Burridge et al., 2011, 2017; Carduff et al., 2014; Doctors of BC, 2016a, 2016b). In Canada, physicians in Nova Scotia were unable to bill for time spent with caregivers unless they had scheduled separate appointments (Kiceniuk et al., ND). Similarly, physicians in Ontario reported insufficient time and reimbursement for supporting caregivers (Bedard et al., 2014).

In conclusion, caregiving can be a complex and emotionally taxing responsibility for both physicians and caregivers. Primary care practices may not be able to meet all the caregivers' needs, so identifying appropriate referral services is essential. In the UK, approximately 20% of GPs referred caregivers to support services or organizations (Greenwood et al., 2010; Jones et al., 2012). However, compiling and maintaining comprehensive lists of necessary services and supports can be time-consuming for individual practices.

2. Facilitators and Barriers at the Health and Community Systems Level

Electronic health records (EHRs) are an emerging innovation that can enhance communication between primary care, specialists, and hospitals (Gill et al., 2014). The integration of EHRs should enable clinicians to make referrals and share information with colleagues more efficiently. However, there are significant system-level barriers. First, healthcare systems continue to prioritize patient care over caregiver support. Secondly, health and community services remain fragmented and disconnected. Third, services that would assist caregivers are often either unavailable or difficult to access.

Despite healthcare reforms, the focus remains on patient care, with caregivers receiving limited attention. Furthermore, ethical guidelines for physicians regarding caregiver support often provide conflicting advice (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016). Another barrier identified is the siloed nature of health and community systems. Although collaborative, integrated care models are recommended, the pathways for healthcare professionals to refer caregivers to community organizations are often poorly defined. Even in urban areas with developed healthcare and social systems, the services caregivers require may not be accessible. For instance, caregiver education and rehabilitation services are often available only in certain locations, creating barriers for caregivers who lack transportation or are unable to find respite care.

3. Facilitators and Barriers at the Policy Level

Clear, structured policies that direct physicians to assess and support caregivers, with funding allocated, could improve primary care physicians' ability to reorganize their practices to better assist caregivers. In the UK, the Quality and Outcomes Framework provides financial incentives to GPs for caregiver care (Greenwood et al., 2010; Greenwood et al., 2011; Jones et al., 2012). In contrast, Canada lacks federal legislation recognizing caregivers, although some provincial-level initiatives, like Manitoba's 'Caregiver Recognition Act' (2011), emphasize timely, accessible caregiver support. However, the Act lacks enforceable provisions and fails to specify who should provide the support.

Professional ethics policies also present a barrier. Currently, they do not offer clear guidelines for supporting caregivers (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016). Doctors of British Columbia have developed a policy document and toolkit to help physicians organize their practices around caregiver support. They advocate for a government-driven caregiver strategy that formally acknowledges caregivers in healthcare planning and service delivery (Doctors of BC, 2016a, 2016b) (Table 3).

Discussion

Primary care physicians generally agree that caregivers would greatly benefit from support provided by primary care teams. The most effective approach is seen in collaborative, integrated care models that involve physicians, designated caregiver coordinators or case managers, and community support organizations. Despite this agreement, there are several barriers preventing physicians from consistently identifying and supporting caregivers (see Tables 2 and 3). Currently, the role of the physician in caregiver-centered care is not well-defined, and it varies significantly. Caregivers often do not identify themselves as such or seek assistance. There is an expectation that family physicians will direct patients and families to the appropriate services, and caregivers highly value the information provided by physicians, though it may not always be delivered in a timely manner (Turnpenny & Beadle-Brown, 2015). Family caregivers now spend a significant portion of their time—15% to 50%—navigating health and social care systems, managing services that are often fragmented (Taylor & Quesnel-Vallée, 2017).

Health and community systems frequently operate in isolation, making it difficult for physicians to refer caregivers to other services or assist them in navigating these systems. Caregiving is not typically viewed as a medical issue, but addressing caregivers' needs is often complex and time-consuming. Many physicians report feeling they lack the time to tackle the challenges caregivers face, and they feel undercompensated for the support they currently provide to caregivers (see Table 3). Schulz et al. (2018) and Schulz and Czaja (2018) describe these challenges as a “confluence of structural and process barriers” (p. 358). Seven authors noted that a lack of awareness about where to refer caregivers for services was a significant obstacle (see Table 2). Some countries and local communities have introduced centralized referral systems, so primary care practices no longer need to maintain up-to-date lists of resources. For instance, the Family Caregiver Alliance and area Agencies on Aging in the United States provide updated resource lists. In the UK, general practices can register with Carers UK for access to current resources. However, U.S. physicians reported that in-office materials were the most impactful resources for caregivers (Skufca, 2019).

Improving support and care for family caregivers will require a systematic approach to identifying, assessing, and assisting caregivers throughout the care process, within both healthcare and community systems (Schulz et al., 2018; Schulz & Czaja, 2018). Since many family caregivers do not see themselves as such, simply asking "Are you 'looking after' or 'helping' a friend or relative who is ill or disabled?" is recommended (Princess Royal Trust, 2011). It is insufficient to rely solely on primary care physicians to support family caregivers. There must be changes at the practice, health system, and policy levels. To date, the call for caregiver support has primarily come from research institutions and non-profit organizations such as the American Association of Retired Persons and Carers UK (Byrne, 2016; Levine, 2011; Schulz et al., 2018). Broader support will likely be necessary.

Given that physicians report feeling unprepared to assess and assist family caregivers, changes at the system and policy levels are essential. Medical school curricula and continuing medical education should be revised to better equip healthcare professionals to identify, assess, and assist family caregivers. Policy reforms are also needed to mandate caregiver support as part of care standards, accreditation processes, and reimbursement for the time spent on caregiver support (e.g., U.S. Medicare code 99,438; Benton & Meyer, 2019; UK GP carers registry; Greenwood et al., 2010).

In addition to primary care being the first line of support, caregivers highly value information and assistance from professionals (Turnpenny & Beadle-Brown, 2015). Most individuals trust their family physician's perspective (Rolfe, Cash-Gibson, Car, Sheikh, & McKinstry, 2014). Trust in healthcare providers is linked to increased satisfaction, adherence to treatment, and continuity of care (Rolfe et al., 2014), all of which can improve caregivers' health.

Limitations

This review is limited by the scarcity of information on primary care physicians' support for caregivers, particularly from the perspectives of the physicians themselves. Many studies included only a small number of physicians. A deeper understanding of primary care physicians' and their team's attitudes, knowledge, perceived barriers, and views on caregivers' support needs is necessary to gain meaningful insights (Bedard et al., 2014; Greenwood et al., 2010). Additionally, the findings are constrained by the lack of research on how primary care teams have brought about changes, overlooking physicians’ perspectives on how practice and policy innovations might improve family caregiver support.

Conclusion

There is a growing recognition of the need to support caregivers. Primary healthcare teams are ideally positioned to connect caregivers to primary care practices and community resources, but the policy and financial support needed to drive change has been limited. Physicians’ perspectives on caregiver interactions are essential for informing the planning of healthcare and community services. Future efforts should aim to address these gaps in order to provide comprehensive support for caregivers throughout their caregiving journey.

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