What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers

Background Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Methods We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach. Results Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. Conclusions It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. Trial registration ACTRN 12619000251123.

Utilization, Contributions, and Perceptions of Paid Home Care Workers among Households in New York State

Background and Objectives While family caregivers have traditionally provided care for older adults with chronic conditions and disabilities, the demand for paid home care workers has increased in the last decade. Although typically thought to assist with personal care emerging data suggest that paid home care workers assist with a wider scope of care. However, the extent and quality of the care they deliver remains poorly understood. Research Design and Methods Using the Empire State Poll, a telephone-based cross-sectional survey of 800 adults in New York State, we characterized the types of care that paid home care workers provided and the perceived value of that care. Results Of 800 participants surveyed, 274 reported that they or an immediate family member received care from a paid home care worker (34.3%). Of these, the majority (73.9%) reported that paid home care workers provided emotional and/or medical care, in addition to personal care. In adjusted models, providing emotional and medical care (compared to personal care alone) was associated with nearly a two-fold greater perception of importance and experience by the care recipients. Discussion and Implications Our findings provide additional data on how paid home care workers contribute to patient care, from the perspective of the care recipient(s). The type of care provided is associated with varying magnitudes of perceived quality. Although limited to New York, these findings have implications for paid home care workers’ training and compensation. Future studies are warranted to investigate the specific factors that mediate the association between types of care provided and their perceived value.

Co-designing complex interventions with people living with dementia and their supporters

Background and objectives We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods Over October 2019–March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. Results Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. Discussion and implications We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.

Journaling among home care workers during the COVID-19 pandemic: A promising method for qualitative data collection

Qualitative methods that capture individual lived experiences throughout rapidly changing circumstances are particularly important during public health emergencies. The COVID-19 pandemic has put home care workers at risk as they provide vital services in homes to individuals with chronic conditions or disabilities. Using a 6-week journaling process in which we enrolled participants at different points, we sought to examine experiences of home care workers ( n = 47) in the United States in New York and Michigan during April–July 2020 of the COVID-19 pandemic. Our methods for data collection and analysis were guided by a general qualitative approach as we aimed to examine the weekly perspectives and lived experiences of home care workers. We asked individuals to respond to our journaling prompts weekly to capture their reflections in “real time.” To better understand home care workers’ perspectives on journaling and the broader external context in which they provided care, we triangulated our data with interviews with home care workers ( n = 19) and home health agency representatives ( n = 9). We explored the feasibility of a rolling journaling process during an unprecedented public health emergency, characterized by rapid changes and uncertainty in day-to-day life, and reflect on lessons learned to guide future research on journaling for data collection, particularly for marginalized workers during public health crises, when events are evolving rapidly.

Vulnerability and Resilience in the Covid-19 Crisis: Race, Gender, and Belonging

During the early months of the 2020 pandemic, migrants who travelled to the United States to pick crops, scrub floors, stock warehouses, and tend to elders became ‘heroes’ for performing necessary labour – unless they were surplus bodies crammed into prison-like detention waystations before being deported for the crime of arriving without proper papers. The pandemic intensified states of precarity. Especially among those labelled as ‘essential workers’, the lack of protective equipment and labour rights put them on the frontline of exposure. But domestic and home care workers, meatpackers, fieldhands, and others in the US stepped out of the shadows to demand inclusion in social assistance, occupational health and safety laws, and other state benefits. This chapter historicises the recent hardships and the organising of (im)migrant workers: it shows that the policies of Donald J. Trump were not an aberration, but part of a national pattern of racial differentiation with gendered inflections. Vulnerability, however, is only part of the story. Workers remained resilient in the face of the hidden enemy of Covid-19, as they sought safe and decent living and working conditions.

Get In and Get Out: The Impact of COVID-19 on the Emotional Health of Home Care Workers

This research explores the emotional health of home care workers (HCWs) during the coronavirus pandemic. In-depth, qualitative interviews were conducted with 17 home care workers in the fall of 2020. Thematic analysis revealed important connections between emotional health and success on the job. Perception of time and appreciation emerged as key elements that impacted emotional health. HCWs expressed the pressure to perform as usual while simultaneously taking on extra tasks as distracting from direct client care and reinforcing a task-oriented care approach. As a result of these tensions, HCWs experienced a loss of appreciation by the client, who prioritized personal safety and a “get in and get out” attitude, leaving the HCW feeling less fulfilled in their work. Implications of this research highlight the importance of HCW emotional health needs when retaining HCWs as valuable members of the long-term care workforce is paramount.

The disruption of the care chain: why do Lithuanian migrant home care workers return to their home country?

This study examined reasons for return migration among Lithuanian migrant home care workers who provided care to older adults abroad. In total, 13 interviews were conducted with a diverse sample of returnees. Using constant comparison, three major themes were identified. The first theme described the undocumented nature of the job as a reason to return. The emotional consequences of the job as well as its physically demanding aspects also were portrayed. The third theme addressed the increased awareness to possible losses and care needs brought by the job. Our findings stress the importance of the job characteristics of the worker as a push factor that results in the return of migrant workers to their home. The importance of the documentation status of the job and its precarious nature are discussed.

Book Review: The New American Servitude: Political Belonging Among African Immigrant Home Care Workers

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