Double-duty caregivers enduring COVID-19 pandemic to endemic: "It's just wearing me down".

The COVID-19 pandemic has considerably strained health care providers and family caregivers. Double-duty caregivers give unpaid care at home and are employed as care providers. This sequential mixed-method study, a survey followed by qualitative interviews, aimed to comprehensively understand the experiences of these Canadian double-duty caregivers amidst the pandemic and the transition to the endemic phase. The multi-section survey included standardized assessments such as the Double-duty Caregiver Scale and the State Anxiety Scale, along with demographic, employment-related, and care work questions. Data analysis employed descriptive and linear regression modeling statistics, and content analysis of the qualitative data. Out of the 415 respondents, the majority were female (92.5%) and married (77.3%), with 54.9% aged 35 to 54 years and 29.2% 55 to 64 years. 68.9% reported mental health decline over the past year, while 60.7% noted physical health deteriorated. 75.9% of participants self-rated their anxiety as moderate to high. The final regression model explained 36.8% of the variance in participants' anxiety levels. Factors contributing to lower anxiety included more personal supports, awareness of limits, younger age, and fewer weekly employment hours. Increased anxiety was linked to poorer self-rated health, and both perceptions and consequences of blurred boundaries. The eighteen interviewees highlighted the stress of managing additional work and home care during the pandemic. They highlighted the difficulty navigating systems and coordinating care. Double-duty caregivers form a significant portion of the healthcare workforce. Despite the spotlight on care and caregiving during the COVID-19 pandemic, the vital contributions and well-being of double-duty caregivers and family caregivers have remained unnoticed. Prioritizing their welfare is crucial for health systems as they make up the largest care workforce, particularly evident during the ongoing healthcare workforce shortage.

Family Involvement Training for Staff and Family Caregivers: Case Report on Program Design and Mixed Methods Evaluation.

The COVID-19 pandemic underscored the imperative for meaningful family involvement in long-term care, aligning with policy and safety standards while enhancing outcomes for caregivers, residents, and staff. The objectives of this article are as follows: (1) a case study report on implementing a family involvement intervention designed to facilitate the formal and safe engagement of family caregivers in resident care and (2) the pilot evaluation of the intervention. We used Knapp's six-step implementation science model to guide and describe intervention development to provide insight for others planning family involvement projects. We employed sequential mixed methods, including surveys with quantitative and qualitative questions before and after program implementation for providers, and surveys and interviews with family caregivers a year after. We used the Mann-Whitney U test (p < 0.05) to assess differences in health providers' perceptions pre- and post-education. Families and staff perceived that the Family Involvement Program was important for improving the quality of care, residents' quality of life and family/staff relationships. Providers' perceptions of the program's positive impact on residents' quality of life (p = 0.020) and quality of care (p = 0.010), along with their satisfaction with working relationships with families (p = 0.039), improved significantly after the program. Qualitative data confirmed improvements in family-staff relationships. In conclusion, we documented the design of this family involvement initiative to encourage family caregivers and staff to work together in residents' care. Youville's Family Involvement Program gives families and family caregivers an explicit role as partners in long-term care. The mixed methods pilot evaluation documented improvements in staff and family relationships.

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.

Supporting First Nations Family Caregivers and Providers: Family Caregivers', Health and Community Providers', and Leaders' Recommendations.

Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta's Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers', providers', and leaders' recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers' role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers' health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers' immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities.

There is a dearth of research on how family caregivers are supported in First Nations. We interviewed family caregivers, health and community providers, and leaders in two Alberta First Nations Communities about their experiences of care and support for the family caregivers in their communities. We employed a qualitative, collaborative participatory action research methodology. We drew on Etuaptmumk, the Mi'kmaw understanding of being in the world is the gift of multiple perspectives. Participants in this research included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). The overarching caregiving theme is the "Hierarchy of challenge". Six themes capture the challenges faced by family caregivers: (one) "Caregiving is a demanding job": yet "No one in a sense is taking care of them"; (two) difficult navigation: "I am unable to access that"; (three) delayed assessments and treatment "And I don't know how they're being missed"; (four) disconnected health records: "It's kind of on you to follow up"; (five) racism, "It's treated differently"; and, (six) social determinants of health, "A lot of these factors have been developing for the longest time". This study provides evidence that family caregivers' need to care for and to maintain their own wellbeing is not top of mind in policy or programs in these First Nations communities. As we advocate for support for Canadian family caregivers, we need to ensure that Indigenous family caregivers are also recognized in policy and programs.

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.

Enhancing Response Ability: Dietetics as a Vehicle for Social Justice-A Primer.

Recent world events have shone a spotlight on the social and structural injustices that impact the lives, health, and well-being of individuals and communities under threat. Dietitians should be well positioned to play a role in redressing injustice through their individual and collective "response abilities", that is, the combination of responsibility for and ability to be responsive to such injustices due to the varying privilege and power that dietitians have. However, recent research shows that dietitians report a lack of knowledge, skill, and confidence to take on such roles, and that dietetic education includes little knowledge- or skill-based learning that might prepare dietitians to do so. This primer aims to introduce readers to concepts that are fundamental to socially just dietetics practice, including privilege, structural competence, critical reflexivity, critical humility, and critical praxis. We assert that when implemented into practice and used to inform advocacy and activism these concepts enhance dietitians' individual and collective response ability to redress injustice.