Thinking with care infrastructures: people,devices and the home in home blood pressure monitoring

The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self‐monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio‐material arrangements involved in self‐monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections.     

Rethinking place and the social work office in the delivery of children's social work services

Limited attention has been given to the concept of place in social work research and practice. This paper draws on the national evaluation of social work practices (SWPs) in England undertaken between 2009 and 2012. SWPs were pilot organisations providing independent social work services for children in out‐of‐home care in five sites. One factor distinguishing some of these pilots was their attention to place. The evaluation employed a mixed methods approach and we use data from interviews with 121 children and young people in out‐of‐home care, 19 birth parents and 31 interviews with SWP staff which explored their views and experiences of the SWP offices. Children and young people were alert to the stigma which could attach to social work premises and appreciated offices which were planned and furnished to appear less institutional and more ‘normal’. Daily interactions with staff which conveyed a sense of recognition and value to service users also contributed to a view of some SWP offices as accessible and welcoming places. Both children and parents appreciated offices that provided fun activities that positioned them as active rather than passive. Staff valued opportunities for influencing planning decisions about offices and place was seen to confer a value on them as well as on service users. However, not all the SWPs were able to achieve these aspects of place, and engaging children and families in place was less likely when the service user population was widely dispersed. Recognising the importance of place and how place is constructed through relationships between people as well as through the physical environment appeared to be key to creating offices that combated the stigma attached to out‐of‐home care. Those leading and managing children's services should explore ways of involving local communities in planning social work offices and turn attention to making these offices accessible, welcoming, places.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

Finding dignity in dirty work: the constraints and rewards of low-wage home care labour

The ageing of the population in the US and elsewhere raises important questions about who will provide long-term care for elderly and disabled people. Current projections indicate that home care workers--most of whom are unskilled, untrained and underpaid--will increasingly absorb responsibility for care. While research to date confirms the demanding aspects of the work and the need for improved working conditions, little is known about how home care workers themselves experience and negotiate their labour on a daily basis. This paper attempts to address this gap by examining how home care workers assign meaning to their 'dirty work'. Qualitative interviews suggest that home care workers have a conflicted, often contradictory, relationship to their labour. Workers identify constraints that compromise their ability to do a good job or to experience their work as meaningful, but they also report several rewards that come from caring for dependent adults. I suggest workers draw dignity from these rewards, especially workers who enter home care after fleeing an alienating service job, within or outside the healthcare industry.     

Utilisation of home‐based physician,nurse and personal support worker services within a palliative care programme in Ontario,Canada: trends over 2005–2015

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home‐based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home‐based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home‐based palliative care. The purpose of this study was to assess the propensity to use home‐based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two‐part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log‐transformed ordinary least squares regression analysis. Both the propensity and intensity to use home‐based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home‐based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home‐based palliative care has placed dramatic pressures on the budgets of local home and community care organisations.     

An evaluation of the effectiveness of engaging Canadian clients as partners in in‐home care

This exploratory quasi‐experimental evaluation assessed the effectiveness of the use of a concrete discussion guide to promote organisation‐wide application of a partnering approach to engage older home‐care clients with chronic disease/disabilities as care partners. A post‐test‐only design with an independent pre‐test sample was used to compare selected outcomes with those of standard in‐home care. The theoretically informed discussion guide portrayed how to go about the process of empowering partnering by using language and open‐ended conversational leads to construct partnering, partnering effort and health as a resource for everyday living through social interaction. The discussion guide was provided to all providers for use with all clients in one home‐care programme in Ontario, Canada and this organisation was compared with a similar but geographically distanced organisation, also in Ontario. Seven hundred and ninety‐one randomly selected clients (mean age = 72.5 years) receiving 3+ months of in‐home care for chronic conditions/disabilities from the two home‐care programmes between September 2007 and May 2010 completed a researcher‐administered questionnaire at either baseline, 1 year or 2 years. Instruments included the Client's Partnering Experience, Health‐Promoting Partnering Effort, a modified version of Locus of Authority in Decision‐Making, the Medical Outcomes Survey Self‐Rated Health Scale, Health and Social Services Utilization and a modified Functional Independence Measure. Analysis of covariance revealed that the use of the concrete discussion guide to promote organisation‐wide application of a partnering approach achieved significantly greater client partnering experience and health‐promoting partnering effort over time than did the usual approach to in‐home‐care interactions. Using the discussion guide enhanced client/provider partnering, hence, interdependence, contributing positively to promoting clients' health as a resource for everyday living.     

Task shifting in the provision of home and social care in Ontario,Canada: implications for quality of care

Growing healthcare costs have caused home‐care providers to look for more efficient use of healthcare resources. Task shifting is suggested as a strategy to reduce the costs of delivering home‐care services. Task shifting refers to the delegation or transfer of tasks from regulated healthcare professionals to home‐care workers (HCWs). The purpose of this paper is to explore the impacts of task shifting on the quality of care provided to older adults from the perspectives of home healthcare workers. This qualitative study was completed in collaboration with a large home and community care organisation in Ontario, Canada, in 2010–2011. Using a purposive sampling strategy, semi‐structured telephone interviews were conducted with 46 home healthcare workers including HCWs, home‐care worker supervisors, nurses and therapists. Study participants reported that the most common skills transferred or delegated to HCWs were transfers, simple wound care, exercises, catheterisation, colostomies, compression stockings, G‐tube feeding and continence care. A thematic analysis of the data revealed mixed opinions on the impacts of task shifting on the quality of care. HCWs and their supervisors, more often than nurses and therapists, felt that task shifting improved the quality of care through the provision of more consistent care; the development of trust‐based relationships with clients; and because task shifting reduced the number of care providers entering the client's home. Nurses followed by therapists, as well as some supervisors and HCWs, expressed concerns that task shifting might compromise the quality of care because HCWs lacked the knowledge, training and education necessary for more complex tasks, and that scheduling problems might leave clients with inconsistent care once tasks are delegated or transferred. Policy implications for regulating bodies, employers, unions and educators are discussed.     

A configurational approach to the relationship between high-performance work practices and frontline health care worker outcomes

Objective

To identify high-performance work practices (HPWP) associated with high frontline health care worker (FLW) job satisfaction and perceived quality of care.

Methods

Cross-sectional survey data from 661 FLWs in 13 large health care employers were collected between 2007 and 2008 and analyzed using both regression and fuzzy-set qualitative comparative analysis.

Principal Findings

Supervisor support and team-based work practices were identified as necessary for high job satisfaction and high quality of care but not sufficient to achieve these outcomes unless implemented in tandem with other HPWP. Several configurations of HPWP were associated with either high job satisfaction or high quality of care. However, only one configuration of HPWP was sufficient for both: the combination of supervisor support, performance-based incentives, team-based work, and flexible work. These findings were consistent even after controlling for FLW demographics and employer type. Additional research is needed to clarify whether HPWP have differential effects on quality of care in direct care versus administrative workers.

Conclusions

High-performance work practices that integrate FLWs in health care teams and provide FLWs with opportunities for participative decision making can positively influence job satisfaction and perceived quality of care, but only when implemented as bundles of complementary policies and practices.     

Take‐home naloxone and the politics of care

‘Take‐home naloxone’ refers to a life‐saving intervention in which a drug (naloxone) is made available to nonmedically trained people for administration to other people experiencing an opioid overdose. In Australia, it has not been taken up as widely as would be expected, given its life‐saving potential. We consider the actions of take‐home naloxone, focusing on how care relations shape its uses and effects. Mobilising Science and Technology Studies insights, we suggest that the uses and effects of naloxone are co‐produced within social relations and, therefore, this initiative ‘affords’ multiple outcomes. We argue that these affordances are shaped by a politics of care, and that these politics relate to uptake. We analyse two complementary case studies, drawn from an interview‐based project, in which opioid consumers discussed take‐home naloxone and its uses. Our analysis maps the ways take‐home naloxone can afford (i) a regime of care within an intimate partnership (allowing a terminally ill man to more safely consume opioids) and (ii) a political process of care (in which a consumer takes care of others treated with the medication by administering it ‘gently’). We conclude by exploring the political affordances of a politics of care approach for the uptake of take‐home naloxone.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

The importance of leadership style and psychosocial work environment to staff‐assessed quality of care: implications for home help services

Work in home help services is typically conducted by an assistant nurse or nursing aide in the home of an elderly person, and working conditions have been described as solitary with a high workload, little influence and lack of peer and leader support. Relations between leadership styles, psychosocial work environment and a number of positive and negative employee outcomes have been established in research, but the outcome in terms of quality of care has been addressed to a lesser extent. In the present study, we aimed to focus on working conditions in terms of leadership and the employee psychosocial work environment, and how these conditions are related to the quality of care. The hypothesis was that the relation between a transformational leadership style and quality of care is mediated through organisational and peer support, job control and workload. A cross‐sectional survey design was used and a total of 469 questionnaires were distributed (March–April 2012) to assistant nurses in nine Swedish home help organisations, including six municipalities and one private organisation, representing both rural and urban areas (302 questionnaires were returned, yielding a 65% response rate). The results showed that our hypothesis was supported and, when indirect effects were also taken into consideration, there was no direct effect of leadership style on quality of care. The mediated model explained 51% of the variance in quality of care. These results indicate that leadership style is important not only to employee outcomes in home help services but is also indirectly related to quality of care as assessed by staff members.     

‘You have got to stick to your times’: Care workers and managers’ experiences of working in extra care housing

Extra care housing (ECH) has been lauded as an innovative model of housing with care for older people that promotes and supports independent living. The study used a qualitative design to explore how care is delivered in four extra care settings in England over 20 months during 2016–2017. This paper reports findings from semi‐structured interviews with 20 care workers and seven managers. The article argues that, despite being heralded as a new model, care workers in ECH face similar organisational pressures as those working in more conventional settings and, in turn, the care which they are able to provide to residents mimics traditional forms of care.     

“We don't do it for the money” … The scale and reasons of poverty‐pay among frontline long‐term care workers in England

Demographic trends escalate the demands for formal long‐term care (LTC) in the majority of the developed world. The LTC workforce is characterised by its very low wages, the actual scale of which is less well known. This article investigates the scale of poverty‐pay in the feminised LTC sector and attempts to understand the perceived reasons behind persisting low wages in the sector. The analysis makes use of large national workforce pay data and a longitudinal survey of care workers, as well as interviews with key stakeholders in the sector. The analysis suggests that there are at least between 10 and 13% of care workers who are effectively being paid under the National Minimum Wage in England. Thematic qualitative analysis of 300 interviews with employers, care workers and service users highlight three key explanatory factors of low pay: the intrinsic nature of LTC work, the value of caring for older people, and marketisation and outsourcing of services.     

Attractiveness of people‐centred and integrated Dutch Home Care: A nationwide survey among nurses

The World Health Organization is calling for a fundamental change in healthcare services delivery, towards people‐centred and integrated health services. This includes providing integrated care around people′s needs that is effectively co‐ordinated across providers and co‐produced by professionals, the patient, the family and the community. At the same time, healthcare policies aim to scale back hospital and residential care in favour of home care. This is one reason for the home‐care nursing staff shortages in Europe. Therefore, this study aimed to examine whether people‐centred, integrated home care appeals to nurses with different levels of education in home care and hospitals. A questionnaire survey was held among registered nurses in Dutch home‐care organisations and hospitals in 2015. The questionnaire addressed the perceived attractiveness of different aspects of people‐centred, integrated home care. In total 328 nurses filled in the questionnaire (54% response rate). The findings showed that most home‐care nurses (70% to 97%) and 36% to 76% of the hospital nurses regard the different aspects of people‐centred, integrated home care as attractive. Specific aspects that home‐care nurses find attractive are promoting the patient′s self‐reliance and having a network in the community. Hospital nurses are mainly attracted to health‐related prevention and taking control in complex situations. No clear differences between the educational levels were found. It is concluded that most home‐care nurses and a minority of hospital nurses feel attracted to people‐centred, integrated home care, irrespective of their educational level. The findings are relevant to policy makers and home‐care organisations who aim to expand the home‐care nursing workforce.     

Broadening the scope of live‐in migrant care research: How care networks shape the experience of precarious work

Live‐in migrant care work is increasing across welfare states. In the context of ageing populations and changing healthcare systems, live‐in care enables ageing in place without overburdening family caregivers. However, research has shown that live‐in care often puts migrant care workers and their recipients in precarious positions. While the outcome of precarious work has gained attention, it is not self‐evident. Based on interviews with migrant care workers in the Netherlands, as well as formal and informal caregivers, and the staff of intermediary organisations, this study shows that besides client conditions, the interactions of actors in the care network shape the circumstances and experience of migrant live‐in care work. The findings suggest that managing the care networks to which migrant care workers belong makes it possible to mitigate the associated precariousness.     

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes

BackgroundIt is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.AimThis study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care‐related quality of life.MethodWe used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.ResultsWe started with the standard ASCOT questionnaire to assess the care‐related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.ConclusionThere is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long‐term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person‐centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.