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 that family caregivers support and that primary care is the ideal context for reaching caregivers included primary care is the of a for reaching the most caregivers. The primary care physician's in supporting family caregivers could as caregiver health, better care for the care and with care. However, is about the physician's role in supporting family the caregiver the For example, et reported that in both family physicians and caregivers that discussing family caregivers’ needs not the patient Carduff et reported because were rather than Doctors caregivers to ask they The three this on health that on the patient and patient (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; et al., 2010). recommended that the on the patient but that physicians do have an to family caregivers. Gitlin and (2016) the of to family that not reaching to family caregivers is and to patient the to the family caregiver's health is et a They recommend for and should but physicians should the family caregiver's for of and care The physician's should on patient and caregiver quality of caregiver and health, providing and emotional and referring caregivers to and/or were for primary care but physicians had perspectives on their role with caregivers. a survey found interactions focused on medical (Skufca, physicians over they should on a role et al., and general practitioners in the United Kingdom they had in providing emotional support and but to support and to an staff et al., 2012). to be for caregivers within primary care In the survey of general practitioners in the United Kingdom (n = did not respond to the question practice for et al., 2010; et al., 2012). caregivers’ or and identified the caregiver in their to were an important of their but physicians were by the nature of the health system care for and caregivers their role et al., 2014; et al., 2017; et al., 2011; Doctors of BC 2016a,2016b; et al., 2018; et al., 2017; Gill et al., 2014; & Mackenzie, 2010; et al., 2010; Hum et al., 2014; et al., 2012; Kiceniuk et al., ND; Krug et al., 2018; et al., 2018; Robinson et al., 2010; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). of of resources and Hum et provided this should be of that and should be published Canadian physicians were by or to and by as that did not meet caregivers needs and et al., 2014; Kiceniuk et al., that of their or community could be more at providing and caregivers to et al., 2017; et al., 2011; Carduff et al., Doctors of et al., 2017; et al., 2011; et al., 2010; Hum et al., 2014; et al., 2012; 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 et al., 2014; et al., 2017; Doctors of BC 2016a,2016b; et al., 2018; et al., 2017; Gill et al., 2014; & Mackenzie, 2010; et al., 2010; Hum et al., 2014; et al., 2012; Kiceniuk et al., ND; Krug et al., 2018; et al., 2018; Robinson et al., 2010; 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 provide care and support to caregivers. primary they that a caregiver's practice or should be to coordinate care and caregivers to health and community 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), recommended that and to to and a and caregivers as in care’ The and to actualising consistent support for caregivers within primary care practices remains et al., 2014; et al., 2017; Carduff et al., 2014; Doctors of BC 2016a,2016b; et al., 2018; et al., 2017; Gill et al., 2014; & Mackenzie, 2010; et al., 2011; Hum et al., 2014; et al., 2012; Kiceniuk et al., ND; Krug et al., 2018; et al., 2018; 2011; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). As Krug et that primary care physicians to practices to support caregivers is and that existing to be and Robinson et that for caregivers in primary care the same systematic as the of long-term However, they that are facilitators and barriers at practice, system and policy that be we are to primary care potential to care and support caregivers. We on thematic analysis to provide on the facilitators and barriers that to be 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 the caregiver a patient in their For example, Canadian family physicians agreed or agreed that caregiver needs and providing support or the caregiver their patient but were or the caregiver not a patient et al., 2014). physician recognition and caregiver protocols as a person to coordinate care for 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 caregivers as key in care of the care as well as with needs of their own et al., 2018). Caregiver about and of time and were practice barriers to supporting caregivers. to not ask for for physicians to them as caregivers et al., 2017; Carduff et al., 2014). physicians (n = caregivers and not of who the caregiver is as the barriers to supporting caregivers (Skufca, as on the caregivers 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 of physician's to or caregiver may more about caregiver and but are In a study of in general practitioners they had training and lacked that they were needs et al., 2010; et al., 2012). In a report of the Primary for study in Kiceniuk et one physician's about think we about dementia or caregiver burden would be of a at the of a to for caregiver burden or that is caregiver a but In a survey of primary care = were or in with caregivers and were or with caregivers (Skufca, The for the time with caregivers may be the caregiver is not the patient et al., 2014; et al., 2017; Carduff et al., 2014; Doctors of BC 2016a,2016b; et al., 2018; et al., 2017; Gill et al., 2014; & Mackenzie, 2010; et al., 2011; Hum et al., 2014; et al., 2012; Kiceniuk et al., ND; Krug et al., 2018; et al., 2018; 2011; Sunne & Huntington, 2017; Thyrian & Hoffmann, 2012; Wang et al., 2018). in results from an Primary for Kiceniuk et reported that in physicians for time to caregiver the caregiver is a patient and had an from the Similarly, in Ontario, et that physicians reported they do not have time to with caregivers and that they are not adequately for supporting caregivers’ In results from this literature caregiving be and for physicians. is that primary care practices provide the support caregivers need, to caregivers for is In the in about one of survey provided about or to and agencies et al., 2010; et al., 2012). and of and by caregivers is and onerous for health are a system that should between primary care, and (Gill et al., 2014). should be to and with as electronic health are We identified three systems barriers in the papers included in this (a) the health system to on care, (b) health and community systems are complex and and (c) to support caregivers are or to to the first system the health system to on patient care, support for caregivers In addition, ethics for physicians on with caregivers provide (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; et al., 2010). to health and community an identified is that these systems to in collaborative, integrated care that to community is the for health to and the community are not well in with health and care the and caregivers may are not Caregiver as well as a or a to care are often 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 the ability of the primary care physicians to their practices to support time and caregivers. The Quality and general practitioners for caregiver care et al., 2010; et al., 2011; et al., 2012; Princess Royal Trust, However, Canada has Canadian caregivers. have at the provincial For example, in the the that for caregivers should be and but is guidance as to who should provide support is addition, this not or that are in or ethics are a ethics do not provide for caregiver support (Barnard & Yaffe, 2014; Gitlin & Hodgson, 2016; et al., 2010). Doctors of have a policy of Family in BC and a for to their practices to support family caregivers. They recommend that the BC caregiver to caregivers in and health (see Table Family caregiver is patient in the were more supporting caregivers as in their with family recognition and about caregiver practice protocols to support caregivers. protocols for family person to coordinate caregiver's care and Caregiver Family caregivers do not as caregivers ask for They to on the health their own those for needs may not be to home to of time and for caregivers is often complex and may not be codes for time with caregivers. on the and on the needs. health and community integrated care that to community 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 as the most this 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 is an that family physicians and to the and and from physicians is but may not be in a & Family caregivers of their time health and care and then the care and from health and care & 2017). health and community systems in onerous for physicians to across systems and caregivers to the services. is not as a medical caregivers needs to be complex and they lacked the time to the caregivers and remunerated for the caregiver care they provide (see Table Schulz et and Schulz and to barriers as a of and authors to caregivers for as a (see Table 2). and have primary care practices do not to have to In the United for example, the family Caregiver and on are to In the United general practices with access to However, 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 or a or who is or is recommended Royal Trust, is to primary care physicians to support family caregivers. are at the practice, health and community and policy levels. pressure for caregivers’ has from the research community and as the of or (Byrne, 2016; 2011; Schulz et al., 2018). support is as physicians report to assess and support family system and policy changes are and medical should training to to assess and support family caregivers. policy changes that caregiver support in of care, and for time for caregivers are and the of and are to complex system change & 2017; & 2018). as the for caregivers & 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 and support from are & their family physician's perspectives & 2014). in is associated with increased to and of care et al., 2014), of should caregivers’ review is limited by the of on primary care support for caregivers from the perspective of primary care physicians. of the reports in this review included perspectives of only a physicians. of primary care physicians and primary is to provide data about their of barriers and perceptions of the support that caregivers et al., 2014; et al., 2010). The findings are 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. is increased that caregivers 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 to inform health and community Future to these is to support caregivers throughout their care

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