Kathleen Galvin

Lifeworld-led healthcare is more than patient-led care: an existential view of well-being

In this paper we offer an appreciation and critique of patient-led care as expressed in current policy and practice. We argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Our critique focuses on how the consumerist/citizenship emphasis in current patient-led care obscures attention from a more fundamental challenge to conceptualise an alternative philosophically informed framework from where care can be led. We thus present an alternative interpretation of patient-led care that we call ‘lifeworld-led care’, and argue that such lifeworld-led care is more than the general understanding of patient-led care. Although the philosophical roots of our alternative conceptualisation are not new, we believe that it is timely to re-consider some of the implications of these perspectives within current discourses of patient-centred policies and practice. The conceptualisation of lifeworld-led care that we develop includes an articulation of three dimensions: a philosophy of the person, a view of well-being and not just illness, and a philosophy of care that is consistent with this. We conclude that the existential view of well-being that we offer is pivotal to lifeworld-led care in that it provides a direction for care and practice that is intrinsically and positively health focused in its broadest and most substantial sense.

The humanization of healthcare: A value framework for qualitative research

Qualitative research, through its illumination of peoples perspectives and experiences, has contributed a particular kind of useful evidence for caring practices. Until now however, it has found its location in healthcare without making the powerful impact on humanizing practice that is its key strength. Our paper develops a conceptual framework for humanizing care, and through examples illustrates an emerging agenda that moves qualitative research into its next and overdue phase: to enter policy-making; curricula in professional education; and to be meaningfully translated into practice in ways that place people as human beings at the centre of care. This paper provides eight philosophically informed dimensions of humanization, which together, form a framework that constitutes a comprehensive value base for considering both the potentially humanizing and dehumanizing elements in caring systems and interactions. In each case, we show, with reference to published studies, how qualitative research findings are already consistent with the humanizing focus articulated in our conceptual framework. We finally describe a reciprocal relationship in which the humanizing value framework guides a dedicated focus for qualitative research, and in which qualitative research in its turn, supports the humanising emphasis because of its intrinsic features.

“Dwelling-mobility”: An existential theory of well-being

In this article we offer an existential theory of well-being that is guided by Heideggers later writings on “homecoming”. We approach the question of what it is about the essence of well-being that makes all kinds of well-being possible. Consistent with a phenomenological approach, well-being is both a way of being-in-the-world, as well as a felt sense of what this is like as an experience. Drawing on Heideggers notion of Gegnet (abiding expanse), we characterise the deepest possibility of existential well-being as “dwelling-mobility”. This term indicates both the “adventure” of being called into expansive existential possibilities, as well as “being-at-home-with” what has been given. This deepest possibility of well-being carries with it a feeling of rootedness and flow, peace and possibility. However, we also consider how the separate notions of existential mobility and existential dwelling as discrete emphases can be developed to describe multiple variations of well-being possibilities.

A pragmatic parallel arm multi-centre randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) for people with multiple sclerosis

Background Fatigue is a common and troubling symptom for people with multiple sclerosis (MS). Aim To evaluate the effectiveness and cost-effectiveness of a six-session group-based programme for managing MS-fatigue (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle (FACETS)). Methods Three-centre parallel arm randomised controlled trial with economic evaluation. Patients with MS and significant fatigue were randomised to FACETS plus current local practice (FACETS) or current local practice alone (CLP), using concealed computer-generated randomisation. Participant blinding was not possible. Primary outcomes were fatigue severity (Fatigue Assessment Instrument), self-efficacy (Multiple Sclerosis-Fatigue Self-Efficacy) and disease-specific quality of life (Multiple Sclerosis Impact Scale (MSIS-29)) at 1 and 4 months postintervention (follow-up 1 and 2). Quality adjusted life years (QALYs) were calculated (EuroQoL 5-Dimensions questionnaire and the Short-form 6-Dimensions questionnaire). Results Between May 2008 and November 2009, 164 patients were randomised; primary outcome data were available for 146 (89%). Statistically significant differences favour the intervention group on fatigue self-efficacy at follow-up 1 (mean difference (MD) 9, 95% CI (4 to 14), standardised effect size (SES) 0.54, p=0.001) and follow-up 2 (MD 6, 95% CI (0 to 12), SES 0.36, p=0.05) and fatigue severity at follow-up 2 (MD −0.36, 95% CI (−0.63 to −0.08), SES −0.35, p=0.01) but no differences for MSIS-29 or QALYs. No adverse events reported. Estimated cost per person for FACETS is £453; findings suggest an incremental cost-effectiveness ratio of £2157 per additional person with a clinically significant improvement in fatigue. Conclusions FACETS is effective in reducing fatigue severity and increasing fatigue self-efficacy. However, it is difficult to assess the additional cost in terms of cost-effectiveness (ie, cost per QALY) as improvements in fatigue are not reflected in the QALY outcomes, with no significant differences between FACETS and CLP. The strengths of this trial are its pragmatic nature and high external validity. Trial registration: Current Controlled Trials ISRCTN76517470.

Kinds of well-being: a conceptual framework that provides direction for caring

This article offers a conceptual framework by which different kinds and levels of well-being can be named, and as such, provides a foundation for a resource-oriented approach in situations of illness and vulnerability (rather than a deficit-oriented approach). Building on a previous paper that articulated the philosophical foundations of an existential theory of well-being (“Dwelling-mobility”), we show here how the theory can be further developed towards practice-relevant concerns. We introduce 18 kinds of well-being that are intertwined and inter-related, and consider how each emphasis can lead to the formulation of resources that have the potential to give rise to well-being as a felt experience. By focusing on a much wider range of well-being possibilities, practitioners may find new directions for care that are not just literal but also at an existential level.

Embodying Nursing Openheartedness: An Existential Perspective

In this article, the authors attempt to articulate one view of the nature of nursing openheartedness and its central role for guiding caring in complex nursing situations. To do this, vignettes of everyday nursing life situations are used to illustrate the following three essential dimensions that constitute nursing openheartedness: (a) the infinity of otherness: keeping open the others difference, (b) embodiment: our shared vulnerable heritage, and (c) practical responsiveness: embracing the value of the objectified gaze and technology. Each of these dimensions is philosophically informed by distinctive insights from the work of Heidegger, Levinas, and Merleau Ponty. Furthermore, guided by Gendlins contributions regarding the nature of embodied understanding, a writing style that attempts to present the nature of nursing openheartedness as a possible experience rather than as an abstract theory is employed.

“Caring for insiderness”: Phenomenologically informed insights that can guide practice

Understanding the “insider” perspective has been a pivotal strength of qualitative research. Further than this, within the more applied fields in which the human activity of “caring” takes place, such understanding of “what it is like” for people from within their lifeworlds has also been acknowledged as the foundational starting point in order for “care” to be caring. But we believe that more attention needs to be paid to this foundational generic phenomenon: what it means to understand the “insiderness” of another, but more importantly, how to act on this in caring ways. We call this human phenomenon “caring for insiderness.” Drawing on existing phenomenological studies of marginal caring situations at the limits of caring capability, and through a process of phenomenologically oriented reflection, we interrogated some existential themes implicit in these publications that could lead to deeper insights for both theoretical and applied purposes. The paper provides direction for practices of caring by highlighting some dangers as well as some remedies along this path.

Pursuing Both Breadth and Depth in Qualitative Research: Illustrated by a Study of the Experience of Intimate Caring for a Loved One with Alzheimer's Disease

In this article, the authors explore the methodological and epistemological tensions between breadth and depth with reference to a study into the experience of caring for a loved one with Alzheimers disease. They consider the benefits and limitations of each of two phases of the study: a generic qualitative study of narrative breadth and a descriptive phenomenological study of lifeworld depth into selected phenomena. The article concludes with a reflection on the kinds of distinctive knowledge generated by each of these two phases and the benefits of their complementary relationship with one another.

An exploratory qualitative study on perceptions about mosquito bed nets in the Niger Delta: what are the barriers to sustained use?

Background: The effectiveness of malaria control programs is determined by an array of complex factors, including the acceptability and sustained use of preventative measures such as the bed net. A small-scale exploratory study was conducted in several locations in the Niger Delta region, Nigeria, to discover barriers against the use of bed nets, in the context of a current drive to scale up net use in Nigeria. Methods: A qualitative approach with a convenience sample was used. One to one interviews with mostly male adult volunteers were undertaken which explored typical living and sleeping arrangements, and perceptions about and barriers against the use of the mosquito prevention bed net. Results: Several key issues emerged from the qualitative data. Bed nets were not reported as widely used in this small sample. The reasons reported for lack of use included issues of convenience, especially net set up and dismantling; potential hazard and safety concerns; issues related to typical family composition and nature of accommodation; humid weather conditions; and perceptions of cost and effectiveness. Most barriers to net use concerned issues about everyday practical living and sleeping arrangements and perceptions about comfort. Interviewees identified were aware of malaria infection risks, but several also indicated certain beliefs that were barriers to net use. Conclusions: Successful control of malaria and scale up of insecticide-treated net coverage relies on community perceptions and practice. This small study has illuminated a number of important everyday life issues, which remain barriers to sustained net use, and has clarified further questions to be considered in net design and in future research studies. The study highlights the need for further research on the human concerns that contribute to sustained use of nets or, conversely, present significant barriers to their use.

Assessing the impact of a nurse-led health education intervention for people with peripheral vascular disease who smoke: the use of physiological markers, nicotine dependence and withdrawal

This study evaluated the impact of a nurse-led health education programme on the behaviour, nicotine dependence and nicotine withdrawal in patients who smoke and suffer from peripheral vascular disease, based in a large teaching hospital in the north of England. Smoking behaviour was measured by self report, end-expired carbon monoxide and urinary cotinine. Nicotine dependence and withdrawal were measured using a nicotine dependence scale and a nicotine withdrawal scale. The findings demonstrated that the programme did have some impact on behaviour. The study raised issues concerning the measurement of physiological markers for smoking as nursing outcomes. Issues about the measurement of nicotine dependence and withdrawal are highlighted.