May 17, 2022

The care economy—the economic sectors that involve paid and unpaid care, including childcare, elder care, and health care—is one of the fastest expanding economic sectors globally. A 2015 study of 45 countries by the International Labour Organization (ILO) found that there were 206 million people in care jobs such as early childhood educators and long-term care providers. But the complex work involved in this crucial sector tends to be poorly understood, undervalued, and unprioritized. The COVID-19 pandemic has brought an increased focus on care, highlighting how the lack of support for care sectors and the increasing trend of financializing access to care have placed equality and health on fragile grounds during this crisis.

As society emerges from COVID-19 into a recovery economy, questions about the future of care also emerge. What organizational and policy changes are needed to ensure that care work and caregiving is more equal and sustainable? And what research questions on the care economy remain to be investigated? To explore these lines of inquiry, the Institute for Gender and the Economy convened a virtual research roundtable on Care Work in the Recovery Economy in January and February of 2022 with support from Women and Gender Equality Canada and the Social Sciences and Humanities Research Council of Canada. The workshop hosted over 60 scholars and practitioners from around the world who presented their cutting-edge research, identified research agendas, and discussed policy implications for the future of care. This report highlights key policy and research insights from the roundtable, including the following:

Intersectional perspectives in data collection and analysis on the care economy will allow for more nuanced and complex understandings of care.
Data collection and analysis should capture the complexity of the care economy by focusing on historically neglected care activities. This may include data on the value of unpaid care, on less direct forms of care work (e.g., care advocacy), and on temporary and migrant care workers and their transitions in and out of care work.
Including paid and unpaid care workers’ voices in policymaking and aligning policies with communities and care workers will result in more effective policy outcomes.
The toll of the COVID-19 pandemic on care workers highlights the importance of making their physical and mental wellbeing a policy and research priority, including through ensuring high-quality working conditions with labour protections.
Care policy should not be seen as independent of other government policy making. Integrating care policies with immigration, economic, technology and other policies would help care workers, including temporary workers, have protection from precarity.
Policymaking should take both the direct impacts on outcomes as well as “expressive” impacts that shape the culture and norms about what is acceptable into account.
Measuring the value of care accurately means measuring not only economic growth and gain (e.g., GDP), but also the less visible, yet foundational, benefits of care to society, such as physical and mental well-being, capabilities, inclusion, and so on.
Without stability and resilience of care systems, care responsibilities are hard to manage and can disadvantage caregivers’ careers, create gender inequity, and lead to overwork and stress.
Technological “solutionism” and other short-term fixes alone will likely not lead to a sustainable and more equal care economy.
For-profit models have not historically resulted in high-quality and affordable care. Non-profit and cooperative models may be better options for a higher-quality care system.
Care work takes many different forms, both paid and unpaid, and is connected to all sectors. Understanding “chains” of care is important to understand who might benefit or be disadvantaged.

As the number of Canadians living with dementia rises, so does the demand for dementia-related care across the country.

CADTH facilitated a roundtable discussion to hear about patients’ and caregivers’ experiences to understand the needs that currently exist for dementia care in Canada. Panellists highlighted the need for care, treatment, supports, and services that prioritize personhood; are inclusive of individuals with young-onset dementia; strike a balance between safety and empowerment; help with navigating the health care system; and involve dignified and respectful communication.

Supporting people transitioning into dementia and their loved ones will require meaningful involvement of individuals during planning, development, and delivery of treatment, supports, and services.

These insights will be available for upcoming CADTH reviews of medical procedures, devices, diagnostics, and drugs related to dementia. They will also be used to identify health technologies and potential topics for future CADTH work about dementia.

OBJECTIVES: The first wave of the COVID-19 pandemic necessitated extensive infection control measures in long-term care (LTC) and had a significant impact on staffing and services. Anecdotal reports indicate that this negatively affected LTC residents’ quality of care and wellbeing, but there is scarce evidence on the effects of COVID-19 on quality of dementia care in LTC. METHODS: From December 2020 to March 2021, we conducted a cross-sectional online survey among staff who worked in LTC homes in Ontario, Canada. Survey questions examined staffs’ perceptions of the impact of COVID-19 on dementia quality of care during the initial wave of the COVID-19 pandemic (beginning 1 March 2020). RESULTS: There were a total of 227 survey respondents; more than half reported both worsened overall quality of care (51.3%) and worsening of a majority of specific quality of care measures (55.5%). Measures of cognitive functioning, mobility and behavioural symptoms were most frequently described as worsened. Medical and allied/support staff had the highest odds of reporting overall worsened quality of care, while specialized behavioural care staff and those with more experience in LTC were less likely to. LTC home factors including rural location and smaller size, staffing challenges, higher number of outbreaks and less COVID-19 preparedness were associated with increased odds of perceived worsening of quality of dementia care outcomes. CONCLUSIONS: These findings suggest that COVID-19 pandemic restrictions and related effects such as inadequate staffing may have contributed to poor quality of care and outcomes for those with dementia in LTC.

BACKGROUND AND OBJECTIVES: Several systematic reviews exist that examine the efficacy of educational interventions in randomized controlled trials (RCTs) designed to improve formal caregivers’ knowledge and skills and/or the outcomes of persons living with dementia. The aim of this article is to summarize existing systematic reviews to assess the effectiveness of educational interventions tested in RCTs and directed at formal caregivers. RESEARCH DESIGN AND METHODS: Smith et al.’s methodology guided this systematic review of systematic reviews. We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the A MeaSurement Tool to Assess systematic Reviews 2 (AMSTAR 2) for quality appraisals. Reviews were included if they contained interventions with an RCT design that focused on changing staff behavior and/or practice toward persons living with dementia, in any setting and for any health care discipline. RESULTS: We identified six systematic reviews, one rated as high-quality on the AMSTAR 2. Most interventions were directed at nursing staff, in long-term care facilities, focused on agitation, and were atheoretical. There is insufficient evidence to guide implementation of currently tested interventions; however, training in communication skills, person-centered care, and dementia-care mapping with supervision show promise for improving agitation. DISCUSSION AND IMPLICATIONS: There’s a critical need for additional research with well-designed RCTs, and clear reporting of protocols and findings to inform the field on how best to train and support the workforce. Although there is no conclusive evidence on what interventions are most effective, it could be argued that providing training using interventions with modest evidence of impact is better than no training at all until the evidence base is strengthened.

OBJECTIVE: Setting goals collaboratively with patients is a key aspect in shared decision-making (SDM) in malnutrition interventions. The aim, therefore, was to gain an understanding of clinical dietitians’ reflections regarding the process of goal-setting with patients at risk of malnutrition. METHODS: Six semi-structured audio-recorded focus group discussions were held with registered dietitians (n = 29) from primary healthcare and hospitals in Sweden. Focus group transcripts were analysed thematically to find patterns in the data and identify themes. RESULTS: Dietitians expressed striving to explore patients’ narratives, capabilities, and resources before deciding on goals. They described different strategies in counseling patients and a lack of patient participation in the goal-setting. They emphasized the difficulties of setting feasible goals due to discrepancies between their clinically-oriented goals and patients’ personal goals. CONCLUSION: Findings highlight a gap in the process of setting goals for patients at risk of malnutrition, where patients’ participation was lacking. Education in SDM, and strategies and tools to support dietitians in involving patients in goal-setting, are required to bridge the gap and promote person-centeredness. PRACTICE IMPLICATIONS: Findings may be further used to develop tools and strategies, and design studies on the implementation of and education in SDM and goal-setting for malnutrition interventions.

BACKGROUND: Involving families in care benefits both patients and their families. Sweden was one of the first countries to introduce family nursing, but its effect on nurses’ attitudes toward involving families in care was unknown. First, this study aimed to investigate registered nurses’ attitudes about the importance of involving families in nursing care. Second, it aimed to compare these attitudes over a decade. METHODS: This comparative study was based on data from two separate studies. Data were collected using the Families Importance in Care – Nurses’ Attitudes questionnaire. The first phase of data collection took place in 2009, and the second phase was conducted in 2019. RESULTS: Overall, the nurses were positive towards involving families in care, both in 2009 and 2019. Overall, no significant difference was found between the two studies from 2009 and 2019. On a subscale level, nurses reported significantly higher levels on family as a resource in the study from 2009 compared to the study from 2019. The opposite was shown for the subscales family as a burden and family as an own resource. According to the R(2) values (0.002 – 0.04), the effect sizes were small. CONCLUSION: In Sweden, nurses’ attitudes toward involving families in care did not change over the studied decade, despite changes in nursing, healthcare-system, and society.

BACKGROUND: Many older patients experience constipation as a bothersome symptom with a negative impact on quality of life. During hospitalization, the focus is often on the reason for admission with the risk that other health problems are not prioritized. The aim of the study was to describe the prevalence of constipation and use of laxatives among older hospitalized patients and to investigate the associations with demographic factors, risk assessments and prescribed medications. METHODS: A descriptive retrospective cross-sectional study design was used. This study enrolled patients aged 65 years or older admitted to a geriatric department. Data from electronic health records regarding constipation, demographics, risk assessments, medical diagnoses, prescribed medications and length of stay were extracted. Constipation was assessed using ICD- 10 diagnosis, documented signs and symptoms of constipation, and prescribed laxatives. Data was analyzed using descriptive and comparative analyses, including logistic regression. RESULTS: In total, 6% of the patients had an ICD-10 diagnosis of constipation, 65% had signs and symptoms of constipation, and 60% had been prescribed laxatives. Only 5% of the patients had constipation documented according to ICD-10, signs and symptoms, and prescribed laxatives. Signs and symptoms of constipation were associated with prescribed opioids (OR = 2.254) and longer length of stay (OR = 1.063). Being prescribed laxatives was associated with longer length of stay (OR = 1.109), prescribed opioids (OR = 2.154), and older age (OR = 1.030). CONCLUSIONS: The prevalence of constipation varies depending on the methods used to identify the condition. There was a discrepancy between the documentation of constipation in relation to sign and symptoms, ICD-10 diagnosis and prescribed laxatives. The documentation of constipation was not consistent for the three methods of assessment.

BACKGROUND: Frailty assessment in the Swedish health system relies on the Clinical Frailty Scale (CFS), but it requires training, in-person evaluation, and is often missing in medical records. We aimed to develop an electronic frailty index (eFI) from routinely collected electronic health records (EHRs) and assess its association with adverse outcomes in hospitalized older adults. METHODS: EHRs were extracted for 18,225 patients with unplanned admissions between 1 March 2020 and 17 June 2021 from nine geriatric clinics in Stockholm, Sweden. A 48-item eFI was constructed using diagnostic codes, functioning and other health indicators, and laboratory data. The CFS, Hospital Frailty Risk Score, and Charlson Comorbidity Index were used for comparative assessment of the eFI. We modelled in-hospital mortality and 30-day readmission using logistic regression; 30-day and 6-month mortality using Cox regression; and length of stay using linear regression. RESULTS: 13,188 patients were included in analyses (mean age 83.1 years). A 0.03 increment in the eFI was associated with higher risks of in-hospital (odds ratio: 1.65; 95% confidence interval: 1.54-1.78), 30-day (hazard ratio [HR]: 1.43; 1.38-1.48), and 6-month mortality (HR: 1.34; 1.31-1.37) adjusted for age and sex. Of the frailty and comorbidity measures, the eFI had the highest area under receiver operating characteristic curve for in-hospital mortality of 0.813. Higher eFI was associated with longer length of stay, but had a rather poor discrimination for 30-day readmission. CONCLUSIONS: An EHR-based eFI has robust associations with adverse outcomes, suggesting that it can be used in risk stratification in hospitalized older adults.

INTRODUCTION: Knowledge of older person’s experiences of important values in home care service can facilitate the development and delivery of high-quality services supporting their well-being, dignity and participation in the care provided. To date, few studies have explored older person’s values and experiences of home care services. PURPOSE: This study aimed to explore values that older person holds regarding home care services and their experiences of how these values manifest in home care service delivery. PARTICIPANTS AND METHODS: The study has a qualitative exploratory design. Semi-structured interviews were conducted with 16 older persons aged 74-90 who received home care service. Data were analysed using qualitative content analysis. RESULTS: Two themes (each with sub-themes) of values relating to the experience of home care service from the perspective of the 16 older persons were identified: to be supported as an autonomous person and to be supported as a relational being. The participants experience that these two values were only partly manifested in the home care services they received. They also noted that their well-being was negatively affected when staff failed to implement these values. The fundamental values identified in study related to the older person feeling safe, being autonomous, maintaining control and independence, and having relationships. The values constitute help to guide practice from the perspective of older persons who receive home care services. CONCLUSION: The identified values are primarily interpersonal-level values. However, such values are also of importance for home care service organisations when promoting delivery of person-centred care. Taking such a position implies adopting a relation-oriented rather than a task-oriented approach in providing home care services for older persons.