What constitutes ‘good care’ and ‘good carers’? The normative implications of introducing reablement in Danish home care

As populations worldwide are ageing, Western welfare states are currently implementing welfare reforms aimed at curbing the rising need for social and healthcare services for ageing populations. A central element in home‐care reforms in several welfare countries is reablement: short‐term home‐based training programmes aimed at re‐enabling older people to live in their own homes independently of care. In this paper, we explore how transitioning from compensatory care to reablement care is not merely a practical process, but also a deeply normative one. Drawing on Annemarie Mol's concept of ‘ontonorms’ we analyse the normative dynamics involved in transitioning from one form of care to another as reflected in reablement professionals' practices and discourses. The paper draws on 10 months of multisited ethnographic fieldwork carried out from April 2015 to February 2016 in a Danish municipality, including participant observations of reablement practices as well as qualitative interviews with 13 professionals working with reablement. We demonstrate that professionals generally consider reablement to represent a desirable shift in home care from ‘bad care’ practices of making people passive through compensatory care, towards ‘good care’ practices of ‘keeping people going’ despite their limitations. Moreover, we demonstrate that while therapists are valued as ‘good carers’ due to their ability to focus on development and training, nurses and in particular home helpers are devalued as ‘bad carers’ due to their ‘caring genes’ and lack of technical and theoretical skills necessary for documentation work. Finally, we discuss the implications of these normative dynamics, which may risk stigmatising compensating care practices, although this form of care to a large extent continues to coexist with reablement practices. In conclusion, we argue for a more nuanced approach to care, recognising compensatory care and reablement as complementary forms of care, each doing good under different circumstances.     

‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services

There is growing interest in eliciting the views of younger people with dementia (i.e. those under 65 years of age) within health and social care research. The often erroneous view that these individuals are not capable of expressing their views and experiences has now been seriously challenged. The present paper draws on the findings from 14 qualitative in-depth interviews with younger people with dementia conducted in the South-west of England, and considers some of the issues involved in interviewing people with dementia. Purposive and snowballing techniques were used to recruit participants. Data were transcribed and subjected to comparative textual analysis to index, code and analyse the data for emergent themes. Four major themes emerged: (1) the general experience of having dementia; (2) dementia diagnosis; (3) the importance of age; and (4) risk and danger issues. The results indicate that the majority of participants were articulate and insightful about their experiences and needs. The present paper concludes by arguing that the challenge for health and social care professionals is to engage with and consult such individuals about their experiences and what they want from dementia care services, and the authors consider some of the issues involved in interviewing people with dementia.     

Fixing the system? The experience of service users of the quasi‐market in disability services in Australia

A qualitative study involving semi-structured interviews with 31 people with disabilities and 32 carers in the state of Queensland, Australia, found that their experience of supportive service delivery had not improved despite reforms of the service delivery system driven by a version of the quasi-market model. Instead of delivering increased consumer choice and improved efficiency in service delivery, service users experienced inadequate service supply, service cutbacks, and an increased emphasis on cost subsidisation and assessment processes. Additionally, few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated that they should receive. For many consumers, the notion of consumer 'choice' around service provision was fictitious and they felt that any efficiency gains were at the agency level, largely at the consumers' cost. It is concluded that there appears to be no particular benefit to service users of quasi-market reforms, particularly in policy contexts where service delivery systems are historically under-funded.     

‘Why must I wait?’ The performance of legitimacy in a hospital emergency department

This article examines the processes of negotiation that occur between patients and medical staff over accessing emergency medical resources. The field extracts are drawn from an ethnographic study of a UK emergency department (ED) in a large, inner city teaching hospital. The article focuses on the triage system for patient prioritisation as the first point of access to the ED. The processes of categorising patients for priority of treatment and care provide staff with the opportunities to maintain control over what defines the ED as a service, as types of work and as particular kinds of patients. Patients and relatives are implicated in this categorical work in the course of interactions with staff as they provide reasons and justifications for their attendance. Their success in legitimising their claim to treatment depends upon self‐presentation and identity work that (re)produces individual responsibility as a dominant moral order. The extent to which people attending the ED can successfully perform as legitimate is shown to contribute to their placement into positive or negative staff‐constituted patient categories, thus shaping their access to the resources of emergency medicine and their experience of care.     

Do models of care designed for terminally ill ‘home alone’ people improve their end‐of‐life experience? A patient perspective

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill ‘home alone’ people using one of two models of care aimed at maintaining participants’ need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care‐aide hours in their home. An in‐depth qualitative study was conducted in two phases in 2010 using face‐to‐face interviews. The care‐aide model of care resulted in benefits such as easing the burden of everyday living; supporting well‐being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care‐aide hours, patients were able to continue their activities of daily living, could build a sense of ‘normality’ into their lives, and they could live independently through support and dignity.     

The ‘expert’ in problem‐based and case‐based learning: necessary or not?

BACKGROUND: Problem-based learning (PBL) and other small-group teaching methods which incorporate principles of adult learning, are exciting innovations in medical education. In the application of these methods to medical curricula many schools have introduced non-expert tutors. However, research evaluating the effectiveness of non-expert lead teaching has been inconclusive. AIM: The present study aim was to compare the outcome of teaching in small groups facilitated by either an 'expert' or a 'non-expert' tutor, in a single topic area. METHOD: Fourth-year medical students were allocated randomly to teaching of eating disorders either by a non-expert or an expert tutor. Outcomes were evaluated by (i) a knowledge test, and (ii) self-report ratings by tutors and students of their learning methods and other qualities. RESULTS: The study found that while the non-expert tutor was rated more highly for her group management skills, and she also rated her students more highly in the area of oral communication, students who were taught by the expert scored higher in the end-of-course test in the topic area. CONCLUSION: The findings suggest that caution should be exercised, and the need for more research before widespread adoption of teaching by non-expert tutors.     

Is inequity undermining Australia's ‘universal’ health care system? Socio‐economic inequalities in the use of specialist medical and non‐medical ambulatory health care

Objectives: To quantify need-adjusted socio-economic inequalities in medical and non-medical ambulatory health care in Australia and to examine the effects of specific interventions, namely concession cards and private health insurance (PHI), on equity.
Methods: We used data from a 2004 survey of 10,905 Australian women aged 53 to 58 years. We modelled the association between socio-economic status and health service use — GPs, specialists, hospital doctors, allied and alternative health practitioners, and dentists — adjusting for health status and other confounding variables. We quantified inequalities using the relative index of inequality (RII) using Poisson regression. The contribution of concession cards and PHI in promoting equity/inequity was examined using mediating models.
Results: There was equality in the use of GP services, but socio-economically advantaged women were more likely than disadvantaged women to use specialist (RII=1.41, 95% CI:1.26–1.58), allied health (RII=1.21,1.12–1.30), alternative health (RII=1.29,1.13–1.47) and dental services (RII=1.61,1.48–1.75) after adjusting for need, and they were less likely to visit hospital doctors (RII=0.74,0.57–0.96). Concession cards reduced socio-economic inequality in GP but not specialist care. Inequality in dental and allied health services was partly explained by inequalities in PHI.
Conclusions and implications: Substantial socio-economic inequity exists in use of specialist and non-medical ambulatory care in Australia. This is likely to exacerbate existing health inequalities, but is potentially amenable to change.     

The ebb and flow of the NHS waiting list: how do recruitment and admission affect event‐based measures of the length of ‘time‐to‐admission’?

The likelihood of admission is reported in England as the percentage of elective episodes occurring within a certain time, for example, within three months of the date of enrollment on the waiting list. This event-based measure is calculated from cross-sectional data: the denominator is the number of elective episodes occurring in a specified calendar period, and the numerator is the number found to have enrolled on the waiting list less than three months previously. Now the number of elective episodes occurring within three months reflects the likelihood of admission and the numbers eligible to be admitted. If there is any increase in the likelihood of admission or in the number of people exposed to that likelihood then there will be an increase in the number of elective episodes found to have enrolled on the waiting list less than three months previously. Thus the numerator used by the Government Statistical Service accurately reflects conditions during the calendar period and within the enrollment cohorts of interest. The Government Statistical Service also needs a denominator so the episodes observed 0-2, 3-5, 6-8, 9-11 etc. months after enrollment are added as an indication of the number of people that could have been admitted within three months. This denominator implies that the number of people eligible for admission from the 3-5 month waiting time category is the same as the number surviving admission from the 0-2 month waiting time category but, during the period of interest, these two groups of people belong to cohorts that were recruited to the waiting list quite independently. As a result, this denominator will be too big if the number surviving to the end of one waiting time category is bigger than the number eligible for admission from the next and it will be too small if the number surviving to the end of one waiting time category is smaller than the number eligible for admission from the next. The event-based measure assumes that the waiting list is stationary and closed and only gives unbiased estimates under these conditions. This paper describes three alternative measures which recognize that the number of people recruited or admitted may vary from one quarter to the next. It uses Department of Health data to assess the size of the error if the event-based measure is used in these circumstances.     

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non‐Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access‐to‐care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self‐identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non‐users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.     

‘The team for both sides?’ A qualitative study of change in heart failure services at three acute NHS Trusts

Heart failure (HF) is an increasingly prevalent long‐term condition that affects around 900,000 people in the United Kingdom (National Institute for Health and Clinical Excellence). The study examined how HF services in the English National Health Service (NHS) were changing, focusing particularly on the primary/secondary care interface. The maintenance of continuity in care in the face of increasing demand and financial pressures on health and social care was a key concern. Semi‐structured interviews were conducted with 22 members of staff working in HF services in three NHS acute Trusts in the West Midlands of England. Interviews were conducted between April and December 2011 with purposively selected participants and data were analysed using the Framework Method. Four main themes emerged from the analysis: service context, capacity, the primary/secondary interface and communication across boundaries. Barriers to, and facilitators of, continuity of care for patients with HF were identified within these themes. The findings provide insights into the structure, management and work of HF services in the acute and community settings. They highlight how local systems for the management of HF patients are developing in ways which are not necessarily consistent with national policy.     

‘What makes an excellent mental health doctor?’ A response integrating the experiences and views of service users with critical reflections of psychiatrists

While therapeutic relationships are appropriately recognised as the foundation of mental health service, service users commonly report suboptimal experiences. With shared understanding critical to improvement in practice, we explored service users’ experiences and expectations of psychiatrists and consultations, engaging psychiatrists throughout the process. Using an iterative qualitative approach we co‐produced a response to the question ‘what makes an excellent mental health doctor?’ Experiences and expectations of psychiatrists were explored in interviews with 22 service users. Data collection, analysis and interpretation were informed by consultation with peer workers. Findings were contextualised in formal consultations with psychiatrists. As ‘masters of their craft’, excellent mental health doctors engage authentically with service users as people (not diagnoses). They listen, validate experiences and empathise affectively and cognitively. They demonstrate phronesis, applying clinical knowledge compassionately. Psychiatrists share service users’ aspiration of equitable partnership but competing demands and ‘professional boundaries’ constrain engagement. Consistent delivery of the person‐centred, recovery‐oriented care promoted by policy and sought by service users will require substantial revision of the structure and priorities of mental health services. The insights and experiences of service users must be integral to medical education, and systems must provide robust support to psychiatrists.