Support for family caregivers: A scoping review of family physician’s perspectives on their role in supporting family caregivers

Caring takes a toll on family caregivers throughout the care trajectory (Steppacher & Kissler, 2018). Family caregivers often report worsening health and stress/distress (Bauer & Sousa-Poza, 2015; Richardson, Lee, Berg-Weger, & Grossberg, 2013). Family caregiving has become more onerous as illness, frailty and impairments become more severe, but in the last two decades medical advances, increased longevity, shorter hospital stays and the push for community care have made caregiving even more complex and longer lasting (Health Quality Ontario, 2016; Schulz et al., 2018; Sinha, 2018). In 2016, over a third (34%) of caregivers to long-term home care clients in Canada were stressed and distressed (Health Quality Ontario, 2016), up from 16.6% in 2010 (Canadian Institutes for Health Information [CIHI], 2010). Furthermore, primary family caregivers at the greatest risk of distress are those who live with the care recipient, provide more than 20 hr of care, care for a person with moderate to severe impairments (functional, cognitive) and/or depression, and coordinate care or provide medical treatments (Pauley, Chang, Wojtak, Seddon, & Hirdes, 2018; Sinn et al., 2018). Given that primary care physicians have the potential to reach the majority of caregivers throughout the care trajectory (Pindus et al., 2016), an opportunity exists for caregivers to benefit from care and support from primary care teams (Afram, Verbeek, Bleijlevens, & Hamers, 2015; Richardson et al., 2013). Primary care is credited for better population health, more health equity and better use of resources (Starfield, 2012). Four key domains are associated with high-quality primary care: first-contact access for each need, person focused (not disease) over time, comprehensiveness and coordination of care (Hochman & Asch, 2017). Vulnerable populations benefit most from quality primary care (Starfield, 2012) and family caregivers are a vulnerable population (Centers for Disease Control [CDC], 2018). They have high rates of stress and depression, impaired ability to recover from an illness and often neglect their own health because they are providing care. In fact, caregiver's poor health or mortality is frequently the reason for the client's LTC admission (CDC, 2018). Family caregivers believe family physicians are well positioned to support them (Brotman & Yaffe, 1994). Indeed, family physicians were the only sources of formal support associated with reduction of burden for family caregivers of long-term care clients (Shiba, Kondo, & Kondo, 2016). However, primary care physicians may regard supporting caregivers as outside the purview of their role. In Australia, Bulsara and Fynn (2006) found physicians saw their role as to the patient only. As such, they were unable or unwilling to provide emotional or psychological support for caregivers. However, the vast majority of physicians (96%) did think they had a role in referring caregivers to services. Similarly, 91% of Canadian family physicians (n = 142) believed they could only respond to the non-medical needs of caregivers as they were not the patient (Yaffe & Klvana, 2002). Over 80% of physicians in this same study reported that interactions with caregivers were stressful and three-quarters (75.5%) believed they were not adequately remunerated for the stress and time involved to meet caregivers needs. Similarly, general practitioners in the United Kingdom (n = 211) found they lacked the time, resources and training to meet caregivers needs (Simon & Kendrick, 2001). These results suggest that the existing primary care system needs to be adapted to support family caregivers. The demand for system changes to support caregivers primarily comes from bottom-up pressure from academic researchers or top-down in glossy reports from national or provincial agencies (Byrne, 2016). For example, Romanow (2002) in Building on Values: The Future of Healthcare in Canada and Schulz and Eden (2016) Families Caring for an Aging America both recommend that health systems should support caregivers. In addition, editorials and think pieces theorise that primary care should play a central role in caregiver support (Collins & Swartz, 2011; Frisch, 2013; Massoud, Lysy, & Bergman, 2010; Schulz & Czaja, 2018), but primary care is a complex system. Practices are already stretched by growing workloads and decreasing resources (Okunogbe et al., 2018; Steinglass, 2006). Yet, the perspective of primary care physicians is essential to meaningful health system change (Pawson, Greenhalgh, Brennan, & Glidewell, 2014). As such, an important question to ask is: What do primary care physicians think about supporting caregivers? We conducted a scoping review to understand what is known about support for caregivers in primary care by family physicians. The initial literature search of the interface between family physicians or primary care and family caregivers revealed numerous studies on caregivers’ perceptions of interactions with physicians, but only a limited number on physicians’ perceptions on supporting family caregivers. Hence, we decided to do a scoping review to enable a broader exploration of what is known about the topic at hand rather than a systematic review/detailed analysis of a specific research question. A scoping review summarises and synthesises the extent, range and nature of the literature to inform research, practice, programmes and policy by mapping key concepts, types of evidence and gaps in a defined field (Arksey & O'Malley, 2005; Levac, Colquhoun, & O'Brien, 2010). We followed Arksey and O'Malley's (2005) protocols for scoping reviews and Thomas and Harden (2008) guidance for thematic synthesis. We restricted the search to English language and to the last decade (2009–2019) in the electronic databases Scopus, Medline, PubMed and CINAHL using the search terms related to physicians and family caregivers (see Table 1 for search terms). We searched for grey literature on Google using the same terms and Google's search guidance (Google, ND; see Table 1 for search terms and strategy). We sought a broad range of literature, including original research, review articles, systematic reviews, international, national and provincial reports, conceptual/theoretical papers and opinion papers that explored physicians’ perspectives on caregiver support or provided context on physician's role in caregiver support (see Figure 1). Conducted title, abstract and subject headings search for terms related to Physicians: ‘primary care’ OR ‘family care’ AND physician OR doctor OR ‘general practitioner’ OR ‘primary care Physician’ OR ‘family physician’ OR ‘medical home’ AND Family caregivers: Caregiver OR carer OR ‘family caregiver’ OR ‘unpaid caregiver’ OR ‘informal caregiver’ Limited to years: 2009–2019 Title, Abstract and Subject Heading searches were adapted for databases. *Boolean search: Title (Intitle), Abstract (InAB), Subject Heading (InSW) We excluded literature that included only patients, caregivers or staff perceptions of physician's care or primary care physician's roles. In the initial keyword searches, we screened titles and abstracts for inclusion and inclusion criteria. The search results were imported into EndNote and duplicates removed (see Figure 1). Full texts of titles and abstracts remaining after duplicates were removed were retrieved and read in their entirety by the second author. The first and second authors reviewed the included and excluded articles and agreed on the final articles to be included (n = 27). Their results and findings were entered into an extraction table (Table 2). As recommended by Arksey and O’ Malley's (2005) scoping review protocol, we did not assess quality. We imported the papers into NVivo for data management. We coded the text in three stages: line-by-line, for descriptive themes, and then generated analytical themes (Thomas & Harden, 2008). In line-by-line coding, we began adding conceptual codes that would ‘translate’ the content from one study to another. The first and second authors began collating the initial codes into descriptive themes in the second stage. We developed these themes by staying close to the primary studies. We checked back and forth to ensure that the themes reflected the intent within and across the primary studies. Lastly, we identified the key points within these themes through examining the coding frequencies and discussing the storylines in the themes. In all, 27 studies met the broad criteria we set for this 10-year scoping review. In total, 23 papers were from the peer-reviewed literature and four published by associations in the grey literature. Peer-reviewed literature included the following: three papers reviewing the ethics of physicians engagement with caregivers (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick, Leffler, & Hood, 2010); three literature reviews on the role of physicians in care of the dementia caregivers (O'Connor, 2011; Robinson et al., 2011; Sunne & Huntington, 2017); a report on the development of a survey on physician's perceptions of care for caregivers (Bedard, Gibbons, Lambert-Belanger, & Riendeau, 2014), a policy paper (Moore, Frank, & Chambers, 2018), 12 qualitative investigations (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). A policy paper Doctors of BC 2016a,2016b), two guides to developing caregiver-centred care practice (Doctors of BC 2016a,2016b; Princess Royal Trust, 2011), and a survey (Skufca, 2019) were published by organisations. In all, 16 primary studies sought physicians’ perspectives with 800 physician informants overall (range = 2–335; mean = 53, median = 13). One study did not report on the number of physicians participating (Gill et al., 2014). The papers were, in order of number of papers, from 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 characteristics of the included studies are provided in Table 2. We defined three main themes: (a) Primary care is the ideal context for reaching most caregivers and overwhelming recognition that caregivers would benefit from support; (b) collaborative, integrated care models were the recommended designs for caregiver-centred care practices and (c) actualising consistent support for caregivers within primary care practices remains elusive. Therefore, we identified the facilitators and barriers to caregiver-centred care at the practice, health system and policy levels. We delineate the subthemes from these main themes in the sections that follow. Authors recognised that family caregivers need support and thought that primary care is the ideal context for reaching caregivers (all included papers). Typically, primary care is the earliest point of contact making it potentially a valuable resource for reaching the most caregivers. The primary care physician's involvement in supporting family caregivers could improve outcomes such as caregiver health, better care for the care recipient and satisfaction with care. However, there is ambiguity about the physician's role in supporting family caregivers, particularly if the caregiver was accompanying the patient. For example, Burridge et al. (2011) reported that in cancer treatment both family physicians and caregivers thought that discussing family caregivers’ needs was not legitimate when the patient was so ill. Carduff et al. (2014) also reported ambiguity because doctors were reactive rather than proactive. Doctors expected caregivers to ask if they needed support. The three ethical reviewers blamed this ambiguity on restrictive health delivery contexts that focus on the patient and patient confidentiality (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick et al., 2010). All recommended that the focus remain on the patient but stated that physicians do have an ethical responsibility to family caregivers. Gitlin and Hodgson (2016) took the broadest view of responsibility to family caregivers, stating that not reaching out to family caregivers is unethical. Barnard and Yaffe (2014) thought it appropriate to argue against patient choices, when the cost to the family caregiver's health is too great. Mitnick et al. (2010) take a middle road. They recommend respect for patient's dignity, rights and values should guide patient/physician/caregiver interactions, but physicians should validate the family caregiver's role, remain alert for signs of distress, refer appropriately and develop separate care plans (patient, caregiver). The physician's plans should focus on maximising patient and caregiver quality of life. Identifying caregivers, monitoring caregiver mental and physical health, providing information and emotional support, and referring caregivers to education and/or services were suggested roles for primary care practices, but physicians had divergent perspectives on their preferred role involvement with caregivers. To illustrate, a recent American survey found physician/caregiver interactions focused on medical tasks (Skufca, 2019), Dutch physicians over 50 felt they should take on a steering role (Doekhie et al., 2018) and general practitioners in the United Kingdom thought they had roles in providing emotional support and service referral, but expected to delegate support and referrals to an appropriate staff member (Jones et al., 2012). There seem to be few services specifically for caregivers within primary care practices. In the survey of general practitioners in the United Kingdom (n = 79), 73% did not respond to the question ‘Does your practice offer any services specifically for carers?’ (Greenwood et al., 2010; Jones et al., 2012). Nine per cent offered caregivers’ information packs or pamphlets and 9% identified the caregiver in their records. Referrals to other services were regarded an important part of their role, but physicians were frustrated by the hodge-podge nature of the health system whenever care for patients and caregivers extended beyond their clinical role (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; Gill et al., 2014; Greenwood & Mackenzie, 2010; Greenwood et al., 2010; Hum et al., 2014; Jones et al., 2012; Kiceniuk et al., ND; Krug et al., 2018; Leu et al., 2018; Robinson et al., 2010; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). Lack of knowledge of available resources and services was commonly reported. To illustrate, Hum et al. (2014) provided this quote: ‘There should be some kind of book that I can use; and it should be published every year…’ (p. 98). Canadian physicians were frustrated by long wait times or referrals to and by services such as that did not meet caregivers needs and et al., 2014; Kiceniuk et al., suggested that of their or community could be more at providing education and caregivers to appropriate services et al., 2017; Burridge et al., 2011; Carduff et al., Doctors of Foley et al., 2017; Greenwood et al., 2011; Greenwood et al., 2010; Hum et al., 2014; Jones et al., 2012; Leu et al., 2018; Krug et al., et al., 2018; Princess Royal Trust, 2011; Sunne & Huntington, 2017; Thyrian & 2012; Wang et al., 2018). integrated care models were recommended as the to primary care to meet caregivers’ needs (Bedard et al., 2014; Burridge et al., 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., ND; Krug et al., 2018; Leu et al., 2018; Robinson et al., 2010; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). medical associations (Doctors of BC 2016a,2016b; Princess Royal Trust, have developed to physicians their practices to support caregivers. These (Doctors of BC that primary care care practices can provide care and support to caregivers. primary practices, they that a caregiver's practice or should be to caregivers, coordinate care and caregivers to health and community also was that to and community could be and that caregiver or community could to provide support and However, in the policy paper that the of Family in BC Doctors of BC 2016a,2016b), doctors recommended that and other need to to develop and a and caregivers as in care’ (p. The and to actualising consistent support for caregivers within primary care practices remains (Bedard et al., 2014; Burridge et al., 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., ND; Krug et al., 2018; Leu et al., 2018; 2011; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). As Krug et al. that primary care physicians to practices to support caregivers is and that existing need to be recognised and Robinson et al. (2010) that for caregivers in primary care the same systematic as the of other long-term However, they also that there are facilitators and barriers at practice, system and policy that be if we are to primary care potential to care and support caregivers. We on thematic analysis to provide on the facilitators and barriers that need to be if we are to enable primary care physicians and practices to provide caregiver-centred care. the caregiver as a patient in the practice and practice protocols to support caregivers care for caregivers. and physicians were more supporting caregivers if the caregiver was also a patient in their For example, Canadian family physicians agreed or agreed that caregiver needs and distress, providing support or services if the caregiver was their patient was but were or when the caregiver was not a patient (Bedard et al., 2014). physician also recognition and caregiver protocols such as a person to coordinate care for caregivers, and care increased benefit from and to support and that takes of both and medical needs (Doctors of BC 2016a,2016b; Princess Royal Trust, a regarded caregivers as key in care of the care recipient as well as with needs of their own (Doekhie et al., 2018). Caregiver education about caregivers, and of time and were practice barriers to supporting caregivers. to not ask for it for physicians to them as caregivers et al., 2017; Carduff et al., 2014). American physicians (n = patients caregivers and not of who the caregiver is as the barriers to supporting caregivers (Skufca, as doctors focus on the caregivers also on the needs and to their own caregivers do not their of the interactions may physicians from about their health et al., because of the complex caregivers may not be to the home to or take of physician's referrals to services or caregiver may need more education about caregiver and but there are In a study of in general practitioners felt they had training and lacked that they were needs (Greenwood et al., 2010; Jones et al., 2012). In a report of the Primary for study in Kiceniuk et al. one physician's about I think whenever we about dementia or other caregiver burden it would be of a at the of a to for caregiver burden or that there is caregiver it was a few times but In a survey of American primary care = were or in with caregivers and 73% were or with caregivers (Skufca, The for the time with caregivers may be particularly if the caregiver is not the patient (Bedard et al., 2014; Burridge et al., 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., ND; Krug et al., 2018; Leu et al., 2018; 2011; Skufca, 2019; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). To illustrate, in results from an Primary for Kiceniuk et al. reported that in physicians for time to caregiver the caregiver is a patient and had an from the patient. Similarly, in Ontario, et al. (2014) stated that physicians reported they do not have time to with caregivers and some that they are not adequately for supporting caregivers’ (p. In results from this literature caregiving can be and for physicians. is that primary care practices can provide the support caregivers need, so to refer caregivers for is In the in about one of survey provided information about services or referrals to and agencies (Greenwood et al., 2010; Jones et al., 2012). and of services and by caregivers is and onerous for practices. health are a system that should between primary care, and (Gill et al., 2014). should be to referrals and with as electronic health are We identified three systems barriers in the papers included in this (a) the health system to focus on patient's care, (b) health and community systems are complex and and (c) services needed to support caregivers are or to respect to the first system the health system to focus on patient care, support for caregivers In addition, ethics for physicians on with caregivers provide (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick et al., 2010). respect to health and community an identified is that these systems to in collaborative, integrated care that referrals to community is the for health to refer and information the community are not well in with health and care the services and caregivers may need are not Caregiver as well as a or a to care are often offered in only that these may not be to caregivers who do not the access to or or for the they are physicians to assess and support caregivers with could improve the ability of the primary care physicians to their practices to support time and caregivers. The Quality and general practitioners for caregiver care (Greenwood et al., 2010; Greenwood et al., 2011; Jones et al., 2012; Princess Royal Trust, However, Canada has Canadian caregivers. There have some at the provincial For example, in the (2011) the that for caregivers should be appropriate and (p. but there is guidance as to who should provide support is there addition, this not rights or that are in or other ethics are also a ethics do not provide for caregiver support (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; Mitnick et al., 2010). Doctors of have a policy of Family in BC and a for doctors to their practices to support family caregivers. They recommend that the BC caregiver to caregivers in service and health delivery (see Table Family caregiver is also patient in the were more supporting caregivers as patients in their with family recognition and about caregiver practice protocols to support caregivers. protocols for family caregivers, person to coordinate caregiver's care and Caregiver Family caregivers do not as caregivers ask for They to focus on the patient's health their own those for needs may not be to home to Lack of time and for caregivers is often complex and There may not be codes for time with caregivers. on the patient. and focus on the patient's needs. health and community integrated care that appropriate referrals to community services is recommended but systems are not and to may access to and for care Primary care physicians that caregivers would benefit from support from primary care integrated care models that physicians, a caregiver or and community support are regarded as the most this there are barriers to primary care physician's ability to and support caregivers (see and the physician's role in caregiver-centred care is not well defined and do not to or ask for support. There is an that family physicians refer patients and to the appropriate services and and information from physicians is but may not be offered in a & Family caregivers of their time health and care and then the care and services from health and care services & 2017). Typically, health and community systems in it onerous for physicians to refer across systems and caregivers to the services. is not regarded as a medical caregivers needs to be complex and thought they lacked the time to the caregivers and remunerated for the caregiver care they provide (see Table Schulz et al. and Schulz and to such barriers as a of and (p. authors to refer caregivers for services as a (see Table 2). some and have so primary care practices do not it to have to resource In the United for example, the family Caregiver and on are to resource In the United general practices can with access to However, American physicians did were the most caregiver resources (Skufca, support and care for family caregivers systematic and support throughout the care and in the of both health and community systems et al., 2018; Schulz & Czaja, 2018). As family caregivers do not caregivers, or a or who is or is recommended Royal Trust, is to primary care physicians to support family caregivers. are needed at the practice, health and community and policy levels. To pressure for caregivers’ has from the research community and such as the American of or (Byrne, 2016; 2011; Schulz et al., 2018). support is as physicians report to assess and support family caregivers, system and policy changes are and medical education should training to to assess and support family caregivers. policy changes that caregiver support in of care, and for time for caregivers are also and the of and are to complex system change & 2017; & 2018). such as the for caregivers & 2019), Greenwood et al., and inclusion of specific in the for the Health 2019) are of changes to support for family caregivers in primary care. In to primary care practices the first of support, information and support from are & their family physician's perspectives & 2014). in is associated with increased to treatment and of care et al., 2014), of should improve caregivers’ review is limited by the of information on primary care support for caregivers from the perspective of primary care physicians. of the reports in this review included perspectives of only a few physicians. of primary care physicians and primary is to provide data about their of barriers and perceptions of the support that caregivers (Bedard et al., 2014; Greenwood et al., 2010). The findings are also limited by of research in primary care teams have change and do not physicians perspectives of they enable practice and policy to support family caregivers. there is increased that caregivers need support. Primary teams are well positioned to caregivers to both primary care practices and their but the policy and to change has perspectives about caregiver interactions are needed to inform health and community service Future to these is needed to support caregivers throughout their care

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