Expanding the Conceptualization of Support in Low-Wage Carework: The Case of Home Care Aides and Client Death

Home care aides are a rapidly growing, non-standard workforce who face numerous health risks and stressors on the job. While research shows that aides receive limited support from their agency employers, few studies have explored the wider range of support that aides use when navigating work stress and considered the implications of these arrangements. To investigate this question, we conducted 47 in-depth interviews with 29 home care aides in New York City, focused specifically on aides’ use of support after client death. Theories of work stress, the social ecological framework, and feminist theories of care informed our research. Our analysis demonstrates aides’ extensive reliance on personal sources of support and explores the challenges this can create in their lives and work, and, potentially, for their communities. We also document aides’ efforts to cultivate support stemming from their home-based work environments. Home care aides’ work stress thus emerges as both an occupational health and a community health issue. While employers should carry responsibility for preventing and mitigating work stress, moving toward health equity for marginalized careworkers requires investing in policy-level and community-level supports to bolster employer efforts, particularly as the home care industry becomes increasingly fragmented and non-standard.

Recognizing careworkers’ contributions to improving the social determinants of health: A call for supporting healthy carework

Workers engaged in reproductive labor—the caring work that maintains society and supports its growth—contribute to societal health while also enduring the harms of precarious labor and substantial work stress. How can we conceptualize the effects of reproductive labor on workers and society simultaneously? In this commentary, we analyze four types of more relational and less relational careworkers—homeless shelter workers, school food workers, home care aides, and household cleaners—during the COVID-19 pandemic. We then make a case for a new model of societal health that recognizes the contributions of careworkers and healthy carework. Our model includes multi-sectoral social policies supporting both worker health and societal health and acknowledges several dimensions of work stress for careworkers that have received insufficient attention. Ultimately, we argue that the effects of reproductive labor on workers and society must be considered jointly, a recognition that offers an urgent vision for repairing and advancing societal health.

Job Design for Home Care Work: Perspectives From Employers and Home Care Aides

Home-based care is a rapidly growing sector becoming more important to individuals, families, providers, and payers. The ways in which agencies create the work environment for home care aides who are essentially in their clients’ homes is not adequately documented and may be changing rapidly with labor market innovations. This qualitative study describes how different home care business models (e.g., non-profit VNAs, for-profit franchises, uber-style matching, worker-owned coops) address job design and the overall work environment for home care aides. Interviews with employers and focus groups with home care aides examine workplace practices, how work is organized and supported when the workforce is virtual and the workplace is a client’s home, and the perceived attributes of a positive workplace environment across business models. This study fills significant knowledge gaps about home care workplace design and the role of agencies in creating a supportive environment.

Personal Care Aides in residential care and adult day centers: differences in training, benefits, and roles

Personal care aides (PCAs), along with other direct care workers, provide the hands-on care, including help with activities of daily living for individuals receiving care in residential care communities (RCC) and adult day services centers (ADSC). Recruitment and retention of such workers is a challenge as low pay, inadequate training, unsatisfactory roles and lack of benefits contribute to turnover. Using data from the 2018 National Study of Long-Term Care Providers, the only nationally representative data about PCAs in RCCs and ADSCs, this study will assess differences in training hours, benefits, and work roles among PCAs in these settings. About 76% of RCCs and 66% of ADSCs employed aides. On average, PCAs received 32 hours and 51 hours of initial training in ADSCs and RCCs, respectively. Results from bivariate analyses (accounting for complex survey design), showed that benefits received by PCAs varied by sector. A higher percentage of PCAs in ADSCs than in RCCs received health insurance for employees (60% vs. 46%), and pension (51% vs. 40%). About 51% of ADSCs and 46% of RCCs reported that PCAs rarely or sometimes attended care plan meetings. Further, 11% of RCCs and 15% of ADSCs reported that aides rarely or sometimes worked with the same care recipient. This overview of PCA activities, training and benefits may provide insights into approaches to improve the retention of PCAs and subsequently the quality of care provided across sectors.

Perspectives Toward Person-Centered Long-Term Care in China

Health care aides provide direct care for older residents with advanced dementia in long-term care facilities. This study aims to understand care aides’ perceptions of what is ‘good’ care, what is person-centered care, and how to provide person-centered care for older residents with advanced dementia, as preparatory work of the WE-THRIVE consortium’s efforts to develop internationally-relevant common data elements of person-centered dementia care and launch comparative research in LMICs. Semi-structured interviews were conducted with health care aides (N=35) from 2 government-owned and 2 private long-term care facilities in urban China. Directed and conventional content analysis were used, drawing upon core constructs of person-centered dementia care and Nolan’s (2006) senses framework. We found that although care aides were not trained in person-centered care, they did incorporate person-centeredness in their work by tailoring their care to the needs of older residents and facilitating interactions with residents and their peers through communication cues.

Sustainability of INFORM: A Complex Team-Based Improvement Intervention in Long-Term Care

Improving Nursing Home Care Through Feedback On perfoRMance Data (INFORM) was a complex, theory-based, three-arm, parallel cluster-randomized trial. In 2015–2016, we successfully implemented two theory-based feedback strategies (compared to a standard approach to feedback) to increase nursing home (NH) care aides’ involvement in formal communications about resident care (formal interactions [FI], the primary outcome). Here, we report the extent to which FI was sustained 2.5 years following withdrawal of intervention supports. We also report on several determinants of sustainability. We analyzed data from 18 NHs (46 units, 529 care aides) in the control group, 19 NHs (60 units, 731 care aides) in the basic assisted feedback group (BAF), and 14 homes (41 units, 537 care aides) in the enhanced assisted feedback group (EAF). We assessed sustainability of FI, using repeated measures, hierarchical mixed models, adjusted for care aide, care unit and facility variables. In EAF, FI scores increased from T1 (baseline) to T2 (end of intervention) (1.30–1.42, p=0.010), remaining stable at T3 (long-term follow-up) (1.39 p=0.065). FI scores in BAF increased from T1 to T2 (1.33–1.44, p=0.003) and continued to increase at T3 (1.49, p<0.001). In the control group, FI did not change from T1 to T2 (1.25–1.24, p=0.909), but increased at T3 (1.38, p=0.003). Better culture, evaluation and fidelity enactment significantly increased FI at long-term follow-up. Theory-informed feedback provides long lasting benefits in care aides' involvement in FI. Greater intervention intensity neither implies greater effectiveness nor sustainability. Modifiable context elements and fidelity enactment may facilitate sustained improvement.

Feasibility of Routine Quality-of-Life Assessment in Long-Term Care Homes

Maximizing long-term care (LTC) residents' quality of life (QoL) is the primary goal of care. However, most residents have cognitive impairment and care staff time is severely limited, leading to various complexities in measuring QoL. This study developed and assessed the feasibility of an approach to routinely measuring QoL in LTC residents. We used the DEMQOL-CH, a practical, reliable, valid tool, developed in the UK to be completed by care aides to assess QoL in residents with moderate to severe dementia. We recruited 45 care aides in 10 LTC homes in Alberta, Canada who we surveyed on the QoL of 263 residents via video calls. We assessed time to complete; care aide and manager perceived feasibility of completing the DEMQOL-CH; internal consistency and inter-rater reliability of DEMQOL-CH scores; and we conducted cognitive interviews with 7 care aides to assess care aide comprehension of the tool. Time to complete was on average 4 minutes with little variation. Care aides and managers rated using the DEMQOL-CH as highly feasible and valuable. The internal consistency of the DEMQOL-CH score was 0.80. The DEMQOL-CH score inter-rater agreement was 0.73. Cognitive interviews suggested good comprehension overall with some comprehension problems especially in care aides who speak English as a second language. Asking care aides to complete the DEMQOL-CH is highly feasible, requires minor resources, and reliability is high. However, some items caused comprehension and reliability problems. Reasons and possible solutions will be subject to further investigations.

Care Aides’ Perceptions of Caring for Nursing Home Residents With Past Psychological Trauma

The dynamic interplay between dementia and psychological trauma can exert powerful effects on nursing home residents’ behavioral symptoms and quality of life. Our objectives in this exploratory study were to assess care aides’ perceptions of how often they worked with residents with past psychological trauma, the types of trauma encountered, and reasons for these beliefs. We conducted semi-structured cognitive interviews (n = 10) with care aides in June 2019 to inform the development of a trauma needs assessment (4 questions) that we included in a large survey of nursing staff (2019 - 2020). Care aides (n = 3761) were sampled from 91 randomly selected urban nursing homes stratified by health region, owner operator model, and size. We completed basic statistics and content analyses. Care aides identified residents they believed to have psychological trauma histories and provided reasons for their beliefs. Approximately 12% of the reported traumatic events were disclosed to staff. The most common, broad categories of trauma to emerge during analysis were abuse (40%) and war exposure (30%). Each had sub-categories. The most common categories of signs of trauma were re-experiencing symptoms such as flashbacks and nightmares (28%), and avoidance of specific triggers, such as water or intimate care (24%). The majority of the reported signs of trauma were persistent and distressing for staff and residents. Some behaviours assumed to be responsive behaviours of dementia may relate to traumatic stress symptomatology. Implementing trauma-informed supports for residents and care aides is essential to person-centred care and optimal quality of life.

Rethinking Employer Communication and Support for Home Care Aides: A Case Study of Pandemic Group Support Calls

This case study explores an employer-initiated biweekly group support call for home care aides implemented by a large New York City-based home care agency during the COVID-19 pandemic. Specifically, we investigate how agency staff used information gathered through these calls to intervene into existing agency communication and support systems for aides. Our single-site case study analyzes detailed notes from almost 100 support calls that took place between April 2020 and March 2021, as well as interviews with agency staff from communications, human resources, nursing, and other departments that support aides. We compare and contrast new communication and support mechanisms advanced in conjunction with these calls with agency systems pre-pandemic. Our findings suggest that while calls were initially targeted toward providing emotional and operational support, staff also advocated for more systemic supports. We discuss the sustainability of these new efforts, as well as ongoing barriers and gaps.

Providing Care for Older Residents With Dementia in Nursing Homes in China: Through the Lens of Adaptive Leadership

This study aims to understand staff’s experiences of providing direct care for older residents with advanced dementia in long-term care facilities through the lens of Adaptive Leadership Framework for Chronic Illness (ALFCI). Semi-structured interviews were conducted with health care aides (N=35) from 2 government-owned and 2 private long-term care facilities in urban China. Directed and conventional content analysis were used, drawing upon core constructs of ALFCI. We found that health care aides are confronted with multiple challenges such as high intensity of work, stress from managing older residents’ behavioral and psychological symptoms of dementia (BPSD), a lack of access to on-the-job dementia-specific training, and a lack of support from nurses and managing team. Some of the health care aides demonstrated use of their strengths and doing adaptive work to improve work life and care for older residents by using communication cues, enhancing person-centeredness in their care, and facilitate peer interactions.