Family physicians' preferences for education to support family caregivers: a sequential mixed methods study.

BACKGROUND: One in four Canadians is a family caregiver. Family caregivers (carers, care-partners) are relatives or chosen family, friends, or neighbors who provide 75 to 90% of the care for people with physical or mental illness, disabilities, or frailty living in community homes and assist with 15 to 30% of the care in congregate care. However, a recent (2022) Statistics Canada population health study reports 44% of family caregivers are distressed. Family physicians and primary care teams are well-positioned to support family caregivers; yet, family caregiver needs assessments tend to be ad hoc and their most common needs remain unmet. Research recommends training healthcare professionals to enhance their knowledge and skills to support family caregivers. METHODS: The objective of this sequential mixed methods research, a survey followed by qualitative interviews, was to explore family physicians' desire and preferences for education about supporting family caregivers. 85 family physicians completed the online survey and eight took part in the interviews. Results from the survey and interviews were compared, contrasted, and interpreted together. RESULTS: Primary care physicians expressed a desire to be better equipped to assess and support FCGs' needs. Even though most physicians (61%) were very/confident about addressing family caregivers' needs, 72% were highly/interested in education to support family caregivers of their patients. Topics with the most interest were assessing family caregivers needs in an organized way, assisting family caregivers to access resources, and address system and practice barriers to support family caregivers. The overarching theme running through the interviews was physicians hope for education to help change the patient-focused culture to inclusion of FCGs. The three themes reflect physicians' conviction about including family caregivers in patient care: We need to take care of their caregivers, Practice and system barriers thwart including family caregivers, and Practical education might help. CONCLUSIONS: This study of family physicians' preferences for education to support family caregivers will inform the development of education about supporting family caregivers for family physicians and trainees.

Rural Family Caregiving: A Closer Look at the Impacts of Health, Care Work, Financial Distress, and Social Loneliness on Anxiety.

Even before the COVID-19 pandemic, earlier acute care patient discharges, restricted admissions to long-term care, and reduced home care services increased the amount and complexity of family caregivers' care work. However, much less is known about rural caregivers' experiences. Thus, our aim in this sequential mixed-methods study was to understand how COVID-19 affected rural family caregivers. Thematically analyzed interviews and linear regression on survey data were used to understand family caregiver stress. Fourteen rural caregivers participated in interviews. They acknowledged that they benefitted from the circle of support in rural communities; however, they all reported having to cope with fewer healthcare and social services. 126 rural caregivers participated in the online survey. About a third (31%) of these caregivers had moderate frailty, indicating that they could benefit from support to improve their health. In linear regression, frailty, social loneliness, financial hardship, and younger age were associated with caregiver anxiety. Contrary to the qualitative reports that people in rural communities are supportive, over two-thirds of the rural caregivers completing the survey were socially lonely. Rural family caregivers are vulnerable to anxiety and social loneliness due to the nature of caregiving and the lack of healthcare and social service supports in rural areas. Primary healthcare and home care teams are well-positioned to assess caregivers' health and care situation as well as to signpost them to needed supports that are available in their areas.

Family Caregiving during the COVID-19 Pandemic in Canada: A Mediation Analysis.

Family caregiving is a public health issue because of caregivers' significant contribution to the health and social care systems, as well as the substantial impact that giving and receiving care has on the health and quality of life of care receivers and caregivers. While there have been many studies that associate caregivers' care work, financial difficulty, navigation, and other caregiving factors with family caregivers' psychological distress, we were interested not only in the factors related to family caregiver anxiety but also in hypothesizing how those effects occur. In this study, we used Andrew Hayes' PROCESS moderation analysis to explore the link between caregiver frailty, weekly care hours, and perceptions of financial difficulty, social support, and anxiety. In this analysis, we included 474 caregivers with relatively complete data on all of the variables. In regression analysis after controlling for gender and age, social loneliness (ß = 0.245), frailty (ß = 0.199), financial difficulty (ß = 0.196), care time (ß = 0.143), and navigation confidence (ß = 0.131) were all significant. We then used PROCESS Model 6 to determine the significance of the direct, indirect, and total effects through the serial mediation model. The model pathway from frailty to care time to financial difficulty to social loneliness to anxiety was significant. The proportions of family caregivers who were moderately frail, anxious, and experiencing social loneliness after eighteen months of the COVID-19 pandemic found in this survey should be of concern to policymakers and healthcare providers.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

A Tale of Two Solitudes: Loneliness and Anxiety of Family Caregivers Caring in Community Homes and Congregate Care.

We surveyed 604 family caregivers residing in the province of Alberta to better understand the impact of the COVID-19 pandemic on anxiety, loneliness, and care work. We assessed anxiety with the Six-Item State Anxiety Scale and loneliness with the DeJong-Gierveld Loneliness Scale. The COVID-19 pandemic created two contexts giving rise to feelings of solitude for family caregivers. Family caregivers of Albertans living in private community homes were overwhelmed with caregiving needs while those caring for Albertans living in congregate settings were restricted from caregiving. The results indicated that before the COVID-19 pandemic, 31.7% of family caregivers were anxious and 53.5% were lonely. The proportions of those who were anxious rose to 78.8% and lonely to 85.9% during the pandemic. The qualitative responses of family caregivers connected being overwhelmed with care work either in community homes or as the designated essential caregiver in congregate living settings, as well as being unable to care in congregate care settings, with anxiety and loneliness. The caregivers reporting improvements in their health and relationships with care-receivers credited spending time with the receiver doing pleasant activities together, rather than purely performing onerous care tasks. Policymakers need to consider organizing health and community services to ensure family caregivers are not overwhelmed with care tasks or excluded from caring in congregate care.

Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study.

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne's interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

Family Physician's and Primary Care Team's Perspectives on Supporting Family Caregivers in Primary Care Networks.

BACKGROUND: Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. METHODS: We adopted an interpretive description design to explore family physicians and primary care team members' perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. RESULTS: Ten physicians and 42 team members participated. We identified three major themes. "Family physicians and primary care teams can be a valuable source of support for family caregivers" highlighted these primary care team members' broad recognition of the need to support family caregiver's health. "What stands in the way" spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, "A structured approach may be a way forward." CONCLUSION: A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care.

Physicians and Family Caregivers: Two Perspectives of Physicians' Roles in Long-Term Care.

OBJECTIVES: We explored the roles of attending physicians of long-term care (LTC) residents in supporting their family caregivers (FCGs). DESIGN: In this mixed-methods study, we conducted surveys and focus group interviews with physicians and FCGs. SETTING AND PARTICIPANTS: There were 78 FCGs and 18 physicians in the survey, and 18 FCGs and 9 physicians in the focus groups. They were recruited from 5 urban LTC settings. RESULTS: Although 83.3% of physicians reported they had experience caring for FCGs, 71.8% of FCGs perceived they had not received support from the physicians. There was no statistically significant difference between the FCGs' and physicians' mean responses to the mirrored survey questions. Both groups gave similar ratings, means neutral and agree indicative of ambivalence, on physician's knowledge to identify FCGs who need assistance, ability to assess FCG stress, and aid those experiencing distress and needing advocacy. Analysis of the focus groups revealed the overarching theme: ambiguity about the LTC residents' physicians' role in supporting FCGs. Although physicians noted that residents and families come as a unit, there was ambivalence about the physician's role in supporting FCGs. FCG roles in LTC are also vague. There were 3 sub-themes: "accord on the surface"; "tension in the interface"; and "smoothing the relationship." Both groups thought FCG medical care was beyond the purview of the resident's physician. Physicians and FCGs provided different explanations for the tensions in the FCG/physician interface. Physicians attributed tension to FCG stress and inadequate knowledge, whereas FCGs thought physicians' communication could be improved. Suggestions to smooth the relationship were to align FCG expectations to reality of LTC and different staffing models. CONCLUSIONS AND IMPLICATIONS: Family physicians, policy makers, and FCGs will need to work on polices to ensure LTC physicians' roles in supporting FCGs and FCGs' roles in LTC are delineated and supported.

Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care.

INTRODUCTION: 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. OBJECTIVE: To describe and discuss key findings of a caregiver symposium focused on determining components of HWFT that might better enable HCPs to support FCGs. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Supporting Family Caregivers of Seniors Within Acute and Continuing Care Systems.

BACKGROUND: Family caregivers who provide care to seniors at no cost to the healthcare system are an integral part of the healthcare system. Caregiving, however, can cause significant emotional, physical and financial burden. We held a one-day symposium on how to best involve and support family caregivers in the healthcare system. The symposium brought together caregivers, healthcare providers, administrators and policy-makers to identify needs and make recommendations to address these issues. METHODS: Participants engaged in conversation circles which were audio-recorded and transcribed. Data were qualitatively analyzed alongside written notes provided by participants. RESULTS: Symposium participants identified a lack of both orientation and education for healthcare providers about family caregivers and standardized processes for assessing caregiver burden. They highlighted a need to ensure that the family experience is captured and included as an essential component of care, foster a culture of collaboration, expand the notion of the healthcare team to include family caregivers, provide more integrated palliative care, and enhance policies and programs to acknowledge family caregivers. CONCLUSION: There is a need to recognize the essential role of family caregivers in seniors' health and well-being, and to take on a more comprehensive approach to patient care.