Rachel Fisher, BKin1, Jasneet Parmar, MBBS, MSFP(CAC)2,3, Wendy Duggleby, PhD4, Peter George J. Tian, MD, MPH2, Wonita Janzen, PhD5, Sharon Anderson, PhD3, Suzette Brémault-Phillips, OT, PhD11Department of Occupational Therapy, University of Alberta, Edmonton, AB, Canada
2Department of Family Medicine, University of Alberta, Edmonton, AB, Canada
3Covenant Health-Network of Excellence in Seniors’ Health and Wellness, Grey Nuns Community Hospital, Edmonton, AB, Canada
4Faculty of Nursing, University of Alberta, Edmonton, AB, Canada
5Faculty of Humanities and Social Sciences, Athabasca University, Athabasca, AB, Canada
Family caregivers (FCGs) play an integral, yet often invisible, role in the Canadian health-care system. As the population ages, their presence will become even more essential as they help balance demands on the system and enable community-dwelling seniors to remain so for as long as possible. To preserve their own well-being and capacity to provide ongoing care, FCGs require support to the meet the challenges of their daily caregiving responsibilities. Supporting FCGs results in better care provision to community-dwelling seniors receiving health-care services, as well as enhancing the quality of life for FCGs. Although FCGs rely upon health-care professionals (HCPs) to provide them with support and services, there is a paucity of research pertaining to the type of health workforce training (HWFT) that HCPs should receive to address FCG needs. Programs that train HCPs to engage with, empower, and support FCGs are required.
To describe and discuss key findings of a caregiver symposium focused on determining components of HWFT that might better enable HCPs to support FCGs.
A one-day symposium was held on February 22, 2018 in Edmonton, Alberta, to gather the perspectives of FCGs, HCPs, and stakeholders. Attendees participated in a series of working groups to discuss barriers, facilitators, and recommendations related to HWFT. Proceedings and working group discussions were transcribed, and a qualitative thematic analysis was conducted to identify key themes.
Participants identified the following topic areas as being essential to training HCPs in the provision of support for FCGs: understanding the FCG role, communicating with FCGs, partnering with FCGs, fostering FCG resilience, navigating healthcare systems and accessing resources, and enhancing the culture and context of care.
FCGs require more support than is currently being provided by HCPs. Training programs need to specifically address topics identified by participants. These findings will be used to develop HWFT for HCPs.
Key words: family caregiving, caregiver, health workforce training, competencies
The Canadian population is aging rapidly. For the first time in Canadian census history, the population over age 65 exceeds that of children under 15 years of age.(1) By 2035, 20% of Canadians will be over age 65.(2) While medical advances and a focus on prevention have resulted in more fit and healthy older adults, current projections suggest that health gains will stabilize and likely decrease as people live longer into old age.(3) Thus, care needs are expected to increase significantly, leaving upcoming generations with responsibilities for which they may not be prepared.(4)
Family caregivers (FCG)—individuals who take on an unpaid role providing emotional, physical or practical support in response to an illness, disability or age-related need—tend to 80% of seniors’ care needs.(5,6) In 2007, FCGs provided 1.5 billion hours of care, equivalent to the work hours of 1.2 million full-time employees.(4) Currently, 5.9 million Canadians are FCGs for an older adult.(4) In the years ahead, it is expected that smaller families, the involvement of women in the workforce, geographical separation, and divorce will reduce the number of FCGs.(7,8)
Although some positive outcomes related to caregiving have been documented, FCGs more frequently experience significant caregiver burden(9) and costs to their own well-being.(9,10) This is especially true for those providing over 20 hours of care weekly, or when employment or child-rearing demands compound their workload.(7,8,11) A third of FCGs of home care clients report feeling distressed; up from 16% in 2010.(12,13) Further, FCGs are often marginalized by existing health-care systems(14) and their personal needs frequently go unmet.(15)
Notwithstanding, the plethora of national reports recommending fundamental changes in the way FCGs are identified, assessed, and supported, the health workforce continues to focus on patient needs rather than those of FCGs.(10,11) FCGs rely on health-care providers (HCPs), such as physicians, nurses, social workers, and occupational therapists, to provide services, yet there is a paucity of literature on education HCPs receive about FCGs and factors that may prevent or enable the provision of adequate support.(10,16–18)
To address this gap, we aimed to identify barriers and facilitators faced by HCPs in supporting FCGs, as well as knowledge, skills, and attitudes needed by HCPs to provide comprehensive services to FCGs. Importantly, FCGs themselves were engaged in identifying requisite HCP competencies in this practice area.(10) Emergent themes from this study will inform the development of a competency framework and health workforce training (HWFT) curricula aimed at enabling HCPs to provide better caregiver-centered care. It is envisioned that such competency-based, caregiver-centred care curricula will underpin standards for licensure, certification, and service delivery to FCGs.(12,16,19)
A one-day Health-care Workforce Training in Supporting Family Caregivers of Seniors in Care symposium was held February 22, 2018 in Edmonton, Alberta, to engage multi-level, interdisciplinary stakeholders and FCGs in discussions around gaps in services available to FCGs and HWFT that might better equip HCPs to support FCGs. The symposium was the fourth in a series sponsored by Edmonton’s Covenant Health’s Network of Excellence in Seniors’ Health and Wellness. Focused on family caregivers, the preceding symposia were: Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes (2014); Supporting Family Caregivers of Seniors within Acute and Continuing Care Systems (2016); and Fostering Resilience in Family Caregivers of Seniors in Care (2017).(10, 20–22) Sixty multi-level interdisciplinary participants from the previous symposia were invited to register.
Prior to the symposium, participants were provided with the 2016 and 2017 FCG symposia reports, a literature review, and an environmental scan of HWFT. A survey was also distributed pre-symposium to gain information about key areas in which to support FCGs, and the learning needs of HCPs specific to supporting FCGs. Survey questions focused on communication between HCPs and FCGs, assessment of FCG needs, health system navigation, access to resources, health system culture change, and organizational support for HCP training.
On the day of the symposium, participants were presented with information about health workforce support. Facilitated 60-minute working groups followed, which focused on assessment of caregiver needs, culture change, communication, system navigation and access to resources, and organizational support. Written consent was obtained prior to the symposium, and working group sessions were recorded and transcribed. An evaluation form was distributed post-symposium via email and responses were collated.
Twenty-nine people responded to the pre-symposium survey and 40 individuals participated in the one-day symposium including FCGs (n=8), frontline HCPs (n=6), managers (n=3), senior services organizers (n=3), non-governmental organization leaders (n=6), academics (n=11), and policy-makers (n=3). Although we categorized participants by primary role, many had more than one role. Over half of the participants indicated that they were FCGs, and several academics were also practising professionals including several physicians, a nurse, a social worker and an occupational therapist.
The authors have a realist theoretical perspective, which assumes that there is an external reality which can be observed and studied empirically.(23) The researchers do not suppress individual background and experiences; rather, experience provides a more substantive approach to analysis and theory refinement. Aligned with this perspective, thematic analysis of working group findings and evaluations followed Braun and Clarke’s qualitative methodology, and included both deductive and inductive approaches.(24) This included immersion in, and review of, transcripts of the working group proceedings (RF) to identify key emergent themes. Structured categories were initially imposed on the data by two of the authors (RF, SBP) to organize findings into barriers, facilitators, and recommendations associated with HWFT and topics discussed in the focus groups. This deductive approach identified current practices and actionable changes relevant to HWFT. Preliminary analytical notes facilitated refinement of open axial coding. Themes were then iteratively modified to ensure that they accurately captured the codes, were supported by the data, made sense, and were distinct. Further inductive analysis and validation was supported by five of the authors (SBP, JP, WD, WJ and SA) informed by Rachael Fisher’s preliminary analysis.
Using the research questions as a lens, the transcripts were reviewed line by line and codes were assigned to segments of text to identify emerging themes. This process was recursive, and involved alternating back and forth between data analysis and reading of the literature to derive prominent themes from the data. The collaborative approach to inductive analysis enables researchers to enrich interpretation, as well as evaluate individual interpretations and biases.(23) This combined inductive and deductive collaborative approach enhanced analytical rigour and trustworthiness of the data. NVivo 11 software (QSR International, Melbourne, Australia) was used to categorize data by topic for further exploration and thematic development.
Symposium participants identified facilitators and barriers to care provision to FCGs by HCPs. Facilitators included well-meaning professionals, increased awareness of and attention to FCGs, the availability of client-centred care curricula and community services, access to providers specialized in system navigation, the recognized need for health-care culture change, and promotion of resilience-building practices. Barriers included a lack of awareness and undervaluing of FCGs, system fragmentation and structural demands, engrained HCP practices and attitudes, policies limiting information-sharing with FCGs, a lack of FCG assessments, poor communication, a paucity of HWFT regarding the delivery of emotional support to FCGs and navigation of family dynamics, and inadequate knowledge of conditions impacting older adults (See themes in Table 1).
TABLE 1 Barriers and facilitators to caregiver-centered care
Stakeholders emphasized that HWFT is needed that involves competency development specific to supporting FCGs of older adults. Six competency development themes emerged from the data analysis: 1) understanding and recognizing the caregiver role; 2) communicating with FCGs; 3) partnering with FCGs; 4) fostering resilience among caregivers; 5) navigating health and social systems, and accessing resources; and 6) enhancing the culture and context of care (see Table 2). What follows is a description of each theme.
TABLE 2 Key themes, subthemes, and descriptions for caregiver-centred care
Participants stressed that, while FCGs play a vital role in the care of older adults, their contributions to patient care and the health-care system are often overlooked. This was seen as contributing to the lack of urgency to improve services for FCGs. As HCPs receive little training about FCGs, their understanding is limited regarding both the contributions of FCGs to patient care and the physically and emotionally demanding nature of caregiving.
Participants recommended that HCPs become familiar with caregivers’ contributions, the physical and psychosocial costs of caregiving, and the potential impacts of caregiving on the quality of life of FCGs and care recipients. Awareness of the task demands and emotional needs of caregiving is essential to helping HCPs support FCGs, advocate for policy changes, and improve HWFT.
Participants noted that interactions between FCGs and HCPs are not always as supportive as they could be, with FCGs reporting at times feeling disrespected, unheard, and invalidated. Perceived lack of empathy and compassion increases FCGs’ frustration with and distrust of HCPs and the healthcare system. Policies and legislation that limit communication between HCPs and FCGs were also discussed. While HCPs recognized that FCGs value transparent and honest communication, they were hesitant to share information or involve FCGs in treatment planning due to privacy policies and a patient-focus. As a result, HCPs reported feeling uncomfortable interacting with FCGs; some reported making efforts to avoid interacting with them. Further, HCPs felt ill-equipped to offer emotional support and manage difficult family conversations.
Stakeholders emphasized that HWFT ought to better prepare HCPs to listen actively, convey empathy and equality, and offer emotional support.
Partnering with FCGs can pose a challenge even to well-intentioned HCPs. System demands that prioritize job efficiency over spending time engaging with patients and families can make it difficult for HCPs to take time for FCGs. FCGs also do not frequently self-identify as caregivers, which makes it all the more difficult for HCPs to identify and assess their unique strengths, limitations, and needs. The absence of policies mandating engagement with and providing care to FCGs further impedes support provided to FCGs. Stakeholders noted that HCPs often do not involve FCGs in care planning and, at times, lack knowledge about medical conditions or end-of-life care. FCGs expressed concern with the lack of important information they received regarding their family member’s diagnosis. They often assumed that HCPs themselves lacked important knowledge and experience with certain conditions, causing them to doubt the quality of care their family member was receiving.
Stakeholders recommended that HCPs be mandated and trained to connect with FCGs. Partnering with FCGs was seen as being essential to improving the quality of life of both FCGs and care recipients. Stakeholders acknowledged that involving FCGs may require initial time and effort. Nonetheless, they emphasized that the insights and contribution offered by FCGs would ultimately save time and resources.
Participants recognized that providing care can be simultaneously meaningful and extremely challenging. The need for HCPs to work alongside FCGs to increase their ability to cope with adversity and thrive while caregiving was seen as essential. It was generally reported that HCPs lack an understanding, however, of how to empower FCGs and facilitate their resilience. While research on resilience-building strategies exists, its application to FCGs has yet to be translated into practice.
Participants emphasized that HCPs could enhance FCG resilience by using a caregiver-centred approach, inclusive of taking time to better understand FCGs, identifying and building upon their strengths, and making educational and therapeutic resources available. HCPs could also facilitate risk-reduction by teaching FCGs to recognize and manage their physical and psychological stressors. Further, the importance of preparing younger generations for the inevitability of caregiving was identified. Participants emphasized the need to introduce youth to the concept of family caregiving and resilience-building. Establishing resilience hubs that connect health and community services may also provide FCGs with an accessible source of psychological support.
Navigating the health-care system can be challenging, frustrating, and time-consuming for both HCPs and FCGs. Although various health and social services are available, they are often disconnected and under-resourced. FCGs and HCPs can also lack awareness of programs and resources available at different levels of care and within health and community organizations. This can make it difficult for HCPs to offer FCGs appropriate and timely referrals. While some HCPs (e.g., social workers) have system navigator training, others do not, and job demands and competing priorities can limit their availability to facilitate system navigation.
Stakeholders recommended increasing HCPs’ awareness of health and community resources, and equipping them with skills both to coach FCGs to make informed decisions and to advocate for their needs. Participants also emphasized the importance of reducing system fragmentation to improve accessibility for both HCPs and FCGs, and suggested designing specific coach positions to ensure that FCGs receive assistance. Participants also noted that it would be invaluable to engage previous FCGs as coaches. This may serve a dual purpose of providing experienced FCGs with an ongoing sense of meaning while also supporting individuals who are new to the caregiving role.
Some practices, attitudes, and standards of care that have become entrenched in health-care organizational cultures were described as being ineffective, particularly as they relate to supporting FCGs. The need for HCPs to identify, question, and challenge such practices and norms within health-care settings, as well as their own practices and potential biases, was identified.
Stakeholders suggested that goal-oriented, change management models may facilitate multi-level system change. The consistent use of people-first language across facilities was identified as a potential way to stimulate system-wide change that is acknowledging and respectful of FCGs. Fostering self-reflection, positive workplace behaviour, and interdependence between HCPs and FCGs were envisioned as ways to help facilitate a culture shift towards greater support for FCGs. It was also recommended that HCPs engage in regular staff meetings and group discussions to assess care and support provided at the unit and organizational levels.
The Health-care Workforce Training in Supporting Family Caregivers of Seniors in Care symposium aimed to identify HWFT strategies to address HCP learning and practice gaps as it relates to providing caregiver-centred care. Symposium participants highlighted barriers, facilitators, and recommendations to the provision of support for FCGs. Our analysis supports a growing body of literature demonstrating that, while awareness of FCGs is increasing, the limited care provided to FCGs can negatively impact the health of both FCGs and care recipients.(12,13,25) Further, while person-centred care provision is commonplace across Canada, providing care and support to caregivers is less so and frequently overlooked.(26) Participants advocated for a caregiver-centred care approach that focuses on identification, assessment and engagement of FCGs and use of caregiver-centred practice skills.(27)
Provision of caregiver-centred care necessitates that HCPs recognize the unique contributions and needs of FCGs, and actively and respectfully involve them as equal partners in the planning, delivery, and monitoring of patient care.(28) Cultivating caregiver-centred care, however, requires a culture shift at all levels.(29–34) HCPs can encourage one another to consistently create supportive cultures by modelling caregiver-centred care behaviours, engaging in regular discussions around the quality of care being provided to FCGs,(13,29) and making structural changes—however minor—such as adding a chair to accommodate a FCG during meetings.(35)
To support FCGs effectively, HCPs need to be aware of, and attentive to, the impact that caregiving can have on the overall quality of life of FCGs.(11,36) Recognizing such impacts may contribute to a better understanding and appreciation of the role of FCGs.(9,19) Health workforce training that emphasizes the lived experience and contributions of FCGs and consequences of caregiving(11,37) can deepen HCP understandings of FCGs. Such awareness can heighten HCP empathy toward FCGs, and foster compassionate interactions between HCPs and FCGs.(38)
Care outcomes can improve when both patients and FCGs are engaged in care delivery.(35,39,40) Person-centred care recognizes that FCGs and care recipients are experts in their unique situations, and that working together with professionals can lead to better outcomes. When HCPs support families in carrying out their roles, FCGs are better equipped to manage caregiving responsibilities and make informed decisions.(28) A key priority of HWFT programs is, therefore, to prepare HCPs to partner with FCGs. Such partnerships can promote meaningful engagement in care planning, provision, and decision-making.(28) Sharing personal experiences, collaborating with HCPs around care planning, and setting priorities for health-care organizations are not only foundational engagement activities, but also offer opportunities for HCPs to receive timely feedback from—and respond in a timely manner to—FCGs.(35,41)
FCGs want to establish meaningful relationships with HCPs.(42–43) Being consulted about the care of their older adult care partner, invited to participate in care, and provided with regular updates can lead to more positive relationships between FCGs and HCPs.(43) As the level of involvement FCGs desire may differ, it is important for HCPs to discuss FCGs’ expectations and desired levels of engagement.(10,43) Doing so can clarify expectations, and potentially reduce frustration, fear or guilt that might otherwise arise.(40)
Although communication strategies are taught in postsecondary programs, additional training in communication skills is needed.(10,39) Effective communication was identified as a primary learning objective for all HCP training programs, with research consistently demonstrating links between communication and improved patient satisfaction and clinical outcomes.(44–45) Use of respectful language, active listening, and timely communication are important competencies that can facilitate more supportive interactions with FCGs.(20)
FCGs value empathy and compassion when interacting with HCPs, and benefit from frequent validation,(20) ongoing emotional support, and provision of practical coping strategies. This is particularly the case during periods of heightened stress,(46) or when managing difficult family relationships.(47–48) Training HCPs to be empathetic and compassionate, and to help FCGs cope, become resilient,(46) manage conflicts, and navigate relationships can enable them to better support FCGs. Receipt of such support can make it possible for FCGs to continue caregiving, develop positive coping skills, overcome adversity and the negative effects of caregiving, build resilience, experience personal growth, improve self-efficacy, and foster well-being.(49)
FCGs frequently rely on HCPs to help them navigate health-care systems and connect to community resources—activities that are estimated to consume 15–50% of a caregiver’s time.(12,20,40) Finding, negotiating for and maintaining services,(50) as well as navigating the complexities of health and community systems, can be onerous and intimidating.(38,47) While HCP support with navigation can reduce FCG stress, it is important to consider that some FCGs prefer exploring resources and making decisions for themselves.(40,50) Training HCPs in system navigation and determination of FCG needs in this regard can better position HCPs to determine and provide the appropriate level of FCG support.
Privacy and billing policies that impede HCPs from delivering person-centred care and limit FCG engagement across various levels of care can be frustrating for FCGs and HCPs alike.(35) Involving FCGs in policy and program development may provide organizations and HCPs with important perspectives that they might be able to draw upon when informing and advocating for fundamental policy and practice changes.(35) Advocacy for change at the policy and practice levels is essential.
Intentional efforts are required at the individual, organizational, and systems levels to support FCGs and facilitate culture change toward more caregiver-centred care. The input of FCGs, HCPs, academics, researchers, and policy and decision-makers is critical to this endeavour. Symposium participants—offering their personal, caregiving, professional and academic expertise—were cognizant of the ever-increasing and often overlooked importance of drawing on FCGs and their lived experience when determining HCP competencies and curricula, ways to best support FCGs, and priorities around policy, practice, and culture change. Going forward, enhanced engagement with FCGs will be all the more vital to informing and mobilizing caregiver-centred care delivery across the health-care system.
There are several limitations to this study. The one-day, in person format may have limited who was able to attend the symposium. There was a higher proportion of academics and administrators in attendance, and only participants who had participated in previous symposia were invited to attend. These factors may have affected the scope and generalizability of findings, which were intended to reflect themes from front line clinical interactions with FCGs. The majority of academics were also practising HCPs with knowledge of HWFT and practices. In addition, participants were assigned to working groups with discussion topics developed by the research team, which may have shaped the results. The themes were identified from previous symposia which specially sought the views of a range of stakeholders, especially FCGs. The themes and concerns identified are specific to current practices within Alberta, and therefore might not be generalizable to other locations or health-care systems. Time constraints and group dynamics may also have limited the contributions of group members. That being said, the groups were facilitated by trained facilitators who ensured everyone’s viewpoints were aired, and all participants were able to review study findings. Symposium participants were also asked to validate results and provide feedback.
The Health-care Workforce Training in Supporting Family Caregivers of Seniors in Care symposium gave participants an opportunity to identify HWFT strategies that might address learning and practice needs of HCPs as they relate to providing caregiver-centred care to FCGs. A review of the literature, survey responses, and working group findings isolated key elements of HWFT curricula including: 1) understanding and recognizing the caregiver role; 2) communicating with FCGs; 3) partnering with FCGs; 4) fostering resilience among caregivers 5) navigating health and social systems and accessing resources; and 6) enhancing the culture and context of care. Study findings will inform the development of and research around a health workforce competency framework and HWFT curriculum specific to training HCPs in best-practices for supporting FCGs and providing caregiver-centred care.
Although initial topics for HWFT were determined, specific learning objectives, content, and means of training delivery require further research. Future studies might involve a larger sample of FCGs and front line HCPs to expand further upon and validate the themes identified by the current study. Incorporating a discussion group with no assigned topic or a topic that is selected by FCGs may also be beneficial for identifying further concerns and themes. Additionally, future focus groups with HCPs and academics may centre around what training methods may be most effective and realistic.
This study was partially funded by a Northern Alberta Academic Family Medicine Fund. Our sincere thanks to the attendees of this symposium for all of their contributions.
The authors declare that no conflicts of interest exist.
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Canadian Geriatrics Journal, Vol. 23, No. 2, June 2020