Eileen Sutton

Using qualitative methods for attribute development for discrete choice experiments: issues and recommendations

Attribute generation for discrete choice experiments (DCEs) is often poorly reported, and it is unclear whether this element of research is conducted rigorously. This paper explores issues associated with developing attributes for DCEs and contrasts different qualitative approaches. The paper draws on eight studies, four developed attributes for measures, and four developed attributes for more ad hoc policy questions. Issues that have become apparent through these studies include the following: the theoretical framework for random utility theory and the need for attributes that are neither too close to the latent construct nor too intrinsic to peoples personality; the need to think about attribute development as a two-stage process involving conceptual development followed by refinement of language to convey the intended meaning; and the difficulty in resolving tensions inherent in the reductiveness of condensing complex and nuanced qualitative findings into precise terms. The comparison of alternative qualitative approaches suggests that the nature of data collection will depend both on the characteristics of the question (its sensitivity, for example) and the availability of existing qualitative information. An iterative, constant comparative approach to analysis is recommended. Finally, the paper provides a series of recommendations for improving the reporting of this element of DCE studies.

Investigating Choice Experiments for Preferences of Older People (ICEPOP): evaluative spaces in health economics

This paper deals with three concerns about the evaluative framework that is currently dominant within health economics. These concerns are: that the evaluative framework is concerned entirely with health; that the evaluative framework has an individualistic focus on patients alone; and that the methods used to estimate ‘health’ within the current evaluative framework could be improved both in terms of the generation of descriptive systems and in using valuation methods that rely less on peoples ability to express their preferences on a cardinal scale. In exploring these issues the Investigating Choice Experiments for Preferences of Older People (ICEPOP) programme has explicitly focused on both the topic of older people and the methods of discrete choice experiments. A capability index has been developed and attributes for an economic measure of end-of-life care are currently being generated, providing the possibility of extending the evaluative framework beyond health alone. A measure of carers experience and a framework for extending measurement in end-of-life care to loved ones are both also in development, thus extending the evaluative framework beyond the patient alone. Rigorous qualitative methods employing an iterative approach have been developed for use in constructing attributes, and best-worst scaling has been utilized to reduce task complexity and provide insights into heterogeneity. There are a number of avenues for further research in all these areas, but in particular there is need for greater attention to be paid to the theory underlying the evaluative framework within health economics.

Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods

Background: An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care. Aim: To develop a descriptive system for a measure for use in economic evaluation of end-of-life care. Design: An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure. Setting/participants: In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care. Results: Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed. Conclusion: Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of end-of-life care.

Coordinate My Care: a clinical service that coordinates care, giving patients choice and improving quality of life

Introduction If palliative care is to lead the way towards a new model for integrated care, the ability to share information across the whole of health and social care is essential. Coordinate My Care (CMC) is a service dedicated to preserving dignity and autonomy at the end of life. Its care pathways enable health professionals from primary and secondary care to put the patient at the centre of health care delivery. This service is underpinned by an electronic solution. The CMC record can be accessed 24/7 by all health and social care professionals who have a legitimate relationship with the patient. Patients and methods The record displays diagnosis, prognosis, advanced care plan, resuscitation status and patients wishes for end of life care patients across London. This article is a review of CMC use and outcomes from August 2010- March 2012. Results 1087 CMC patient records were analysed. The primary diagnosis was non-cancer in 52.3%, cancer in 46.3% and unknown in 1.4%, 42% of all patients were cared for by generalist only and had no specialist palliative care involvement. At the time of analysis 207 had died. Actual place of death was home 38.6%, care/nursing home 16.4%, hospice 12.1% and 30% in hospital. This equates to 55% of patients dying in their usual place of residence and reflects that 70% died outside of hospital. Conclusion The CMC service has a well defined pathway underpinned by an electronic solution. It has been shown to change culture and deliver fully integrated, personalised end of life care. A pan-London CMC roll out will take place over the next 12 months.

Researching the end-of-life in old age : cultural, ethical and methodological issues

ABSTRACT Increased life expectancy has strengthened the association between old age and death, with significant implications for gerontology and for the generation of knowledge through research. The global rise in chronic disease has had a significant impact on the duration and shape of dying trajectories in old age and their variations. This development poses ethical and methodological challenges for researchers, not least because it is often difficult to establish whether an older person is ‘dying from’ as opposed to ‘living with’ one or more diseases. This paper reports a comprehensive literature review of empirical research on the end-of-life in old age, and has two inter-related themes. It explores the social and cultural contexts of death and critically analyses the methods and ethical approaches adopted by researchers. Cross-cultural studies and studies in which cultural factors were of prime interest were selected with a view to examining the concept of a ‘good death’ in old age. The paper discusses the evidence of cultural similarities and differences and the impact of social and cultural change on ideas concerning a good death. It identifies contemporary influences and pressures on end-of-life care for older people and discusses the significance of communication and the roles of families and service providers. The paper concludes by identifying substantive and methodological lessons for researchers in gerontology and suggests ways in which the impact of research might be enhanced.

Navigating the stigmatised identities of poverty in austere times: resisting and responding to narratives of personal failure

Behavioural explanations of poverty and disadvantage have figured heavily in political rhetoric in the era of austerity, as a means to understand trajectories into poverty and subsequent relationships between benefit claimants and the state. These discourses are not restricted to political debate, as previous studies demonstrate they impact upon public consciousness and structure the ways that the general public think about poverty, as well as shaping the ways in which people living on low incomes are treated. Drawing upon the testimonies of 62 people in England and Scotland experiencing poverty, this article seeks to understand our participants’ responses to these discourses, in particular: how these behavioural explanations impact upon their understanding of their own situations, as well as their self perceptions; how these discourses shape their relationships with others, in terms of their experience of disrespect; and how participants seek to dissociate themselves from their stigmatising implications.

Patient experiences of perioperative nutrition within an Enhanced Recovery After Surgery programme for colorectal surgery: a qualitative study.

Nutrition is an important element of the Enhanced Recovery After Surgery (ERAS) programme. Patients have previously indicated that nutrition is a key component of ERAS that requires improvement. Our aim was to explore the perioperative nutrition experiences of colorectal surgical patients to identify barriers and facilitators to the integration of nutrition within ERAS.

Stigma, shame and the experience of poverty in Japan and the United Kingdom

Whilst stigma and shame are central features of the experience of poverty in capitalist societies, we know relatively little about crucial aspects of these phenomena, particularly how these experiences differ according to variety of capitalist formation. This article draws on the available empirical literature to examine these relational aspects of poverty in two very different societies, the UK and Japan. Through comparing these literatures, we are able to comment on the ways in which stigma is manifest in differing social, personal and institutional contexts and, therefore, is internalised as shame in similar and divergent forms in these respective societies. We note the very different social values and forms of welfare that constitute these societies which are at times responsible for contrasting experiences of shame, yet conclude that stigma and shame perform important functions within capitalist societies as a means to legitimate the continued existence of poverty within these social systems, and are therefore universal phenomena.

Are We All Agreed? Consensual Methods and the ‘Necessities of Life’ in the UK Today

In recent decades, consensual approaches to poverty measurement have been widely adopted in large-scale survey research both in the UK and internationally. However, while ascertaining the extent of public agreement on the ‘necessities of life’ has been central to this approach, long-standing critiques have questioned the nature of public consensus on poverty derived using survey methods. By drawing on new primary research preparatory to the 2012 UK Poverty and Social Exclusion Survey, we consider the contribution of qualitative methods in understanding public views on necessities and discuss their implications for survey-based poverty measurement. Our findings raise some important conceptual and measurement issues for consensual poverty measures within large-scale social surveys. Firstly, our research suggests that public understandings of the term ‘necessity’ are diverse and may not always be consistent with researchers’ interpretations or with wider usage of this term within consensual poverty measurement. Secondly, a better understanding of the considerations which inform survey respondents’ deliberations is needed. Thirdly, our findings have important implications for how we should interpret the concept of ‘consensus’ within the context of consensual poverty surveys, and emphasise the need for the application of more deliberative methods in determining public views on the ‘necessities of life’.

Using the Normalization Process Theory to qualitatively explore sense-making in implementation of the Enhanced Recovery After Surgery programme: "It's not rocket science"

Introduction The Enhanced Recovery After Surgery programme (ERAS) is an approach to the perioperative care of patients encompassing multiple interventions and involving a wide range of different actors. It can thus be defined as a complex intervention. Despite the strength of the evidence-base in its support, the implementation of ERAS has been slow. This paper specifically explores the utility of Normalization Process Theory (NPT) as a methodological framework to aid exploration of ERAS implementation, with a focus on the core NPT construct coherence. Methods and materials The study employed qualitative methods guided by NPT. Semi-structured interviews were conducted with twenty-six healthcare professionals working in three specialities (thoracic, colorectal, head and neck) in a UK hospital. Data were analysed using an adapted Framework Approach. Results Coherence, or sense-making work, was key to successful implementation and demonstrated in the importance of participants believing in ERAS both as an individual and as a team. In order to invest in ERAS individuals needed to be able to differentiate its practices favourably with those enacted pre-implementation (differentiation). Participants also needed to understand their specific tasks and responsibilities (individual specification) and build a shared understanding (communal specification), resolving differences in planning meetings. Belief in the worth of ERAS was often aligned to evidence for its effectiveness or benefit to patients (internalization), so implementing ERAS therefore ‘made sense’. Sense-making work had strong links with aspects of implementation related to other NPT constructs including resource issues such as funding for data collection and feedback (reflexive monitoring: systemization) and failure to replace key staff members (collective action: skill set workability). Conclusions NPT was found to be a valuable heuristic device to employ in the exploration of ERAS implementation processes. NPT was useful in facilitating recognition of the importance of coherence work to successful implementation. However despite participants’ strong beliefs in the worth of ERAS, it was in translating these beliefs into action that barriers were encountered, highlighting the interconnectedness of NPT constructs and the complicated nature of implementing complex interventions.