Symposium 3 Chronic illness, experience and context: Methodological diversity in qualitative health research

Symposium lead:
Ciara Kierans, Lecturer, Public Health, University of Liverpool, Liverpool, United Kingdom

Symposium chair:
Helen Copper, School of Health Sciences, The University of Liverpool, Liverpool, UK

Symposia focus

Medical systems and health care practices are neither discrete nor autonomous; but rather embedded in forms of social and cultural life, such as the economy, the family and community. With a concern for the human, social, and experiential, qualitative approaches combine a wide-range of strategies towards investigating health in context.

Aim:

We wish to demonstrate the capacity of qualitative inquiry to highlight conventions of experience across conditions and social groups and, in so doing, generate knowledge to facilitate socially focused interventions and policies.

Objectives:

Drawing on five qualitative research studies, focusing on the experienced character of chronic conditions, this symposium has two broad, interrelated objectives:

  • To examine issues of lived experience relating to epilepsy, diabetes, end stage renal failure, and chronic conditions among the elderly. They will address, in particular, critical concerns pertaining to the management of care and delivery of information within wider socio-cultural contexts
  • To demonstrate how advances in qualitative methodologies are facilitating new ways of understanding the social and experiential dimensions of the illness experience

The five papers presented focus on: ‘epilepsy, its experience and perceptions’; ‘the challenges facing women with epilepsy’; ‘adolescent diabetes and its management within the context of the family’, ‘experience of hospital readmission among the elderly’, and ‘the cultural experience of end stage renal failure in Ireland’. With the exception of the latter, all of the studies are based in the north-west of England. Though qualitative in character, each of the papers demonstrates how diverse methodological approaches and epistemologies can be used to open up a range of critical concerns in health care today.

This symposium will, therefore, showcase how a range of methodological practices shaped by phenomenology, narrative theory and ethnography, can facilitate the examination of a range of different research questions and contribute to the understanding of chronic conditions.

Abstract 1: The subjective experience of epilepsy: a narrative analysis

Darlene A Snape (RGN)*,Ann Jacoby, Gus Baker *Research Associate, Div. of Public Health, University of Liverpool, Liverpool, UK

It is argued that epilepsy is not just a medical condition but a social label; successful clinical treatment therefore is only one aspect of epilepsy management. However, knowledge of the exact way in which features of an individual’s background and condition influences the impact that epilepsy has on them is not yet fully understood. One contribution to this lack of understanding arises from the attention within the epilepsy literature on the stigma of the illness, its typologies and measurement and on the management of stigma (i.e., stigma avoidance); leaving broad areas of the illness experience virtually unexplored. This qualitative study, embedded in the post-modern perspective that knowledge construction relies upon the socially crafted tool of language which facilitates a broader range of perspectives and promotes greater subjectivity, draws upon research on illness narratives to explore how epilepsy impacts directly or indirectly on daily living and life trajectories, and to re-present the heterogeneity of the meaning of having epilepsy. Based on theoretical sampling, a series of in-depth interviews were conducted with 14 participants attending epilepsy clinics to elicit their self/illness narratives. Interview transcripts were subjected to paradigmatic and narrative analysis (Polkinghorne, 1995). In discussing the findings; how participants come to interpret what having epilepsy means, how they see themselves as a consequence of this interpretation, and what impact this interpretation has on the way they interact with others, this paper draws on the relationship between language, meaning and power to highlight the ways in which this chronic condition is known, experienced and interpreted by an individual at different phases of their life, both independently and socially. The implications of these interpretations for theories of stigma, healthcare intervention and policy making are considered.

Reference:

  • Polkinghorne, D. E. (1995) Narrative configuration in qualitative analysis. J.A. Hatch, R. Wisniewski. (Eds). Life History and Narrative. London: The Falmer Press. (p5-23)

Acknowledgement:

Research partially funded by a Postgraduate Research Bursary from Epilepsy Action

Abstract 2 The experience of being a woman with epilepsy: An interpretive account

Janine Winterbottom*, Ann Jacoby & Gus Baker. * Epilepsy Nurse Specialist & part-time Postgraduate Research student, The Walton Centre for Neurology & Neurosurgery NHS Trust, Lower Lane, Fazakerley, Liverpool, UK & The University of Liverpool, UK

Women with epilepsy face unique challenges throughout their reproductive lives, requiring the timely delivery of information enabling them to navigate complex management decisions. Information offered to WWE whilst preparing for, or, on discovery of pregnancy has a risk component, either relating to the health of the woman or that of their unborn child. The impact of information framing and the context in which women interpret, use or disregard this information has been neglected. This paper challenges the traditional medical paradigm which places responsibility on the woman to recognise her desire for pregnancy ahead of conception, focusing on a post-modernist phenomenology that shifts attention to the experience of being a woman with epilepsy; and the lived and social context of her construction of knowledge, behaviour and decision-making. Utilizing interpretive phenomenology to structure data collection and analysis (Benner, 1994), the study aims to provide an in-depth exploration of perceptions of risk and probability of adverse pregnancy outcomes for women with epilepsy, in the context of their involvement in shared decision-making. Women with epilepsy of child-bearing age (16-45yrs) were purposively recruited from epilepsy clinics across the North West of England, and invited to take part in focus groups to develop an understanding of shared experience. The results of interim analysis of the seven focus groups held between February 2007 and October 2007 will be presented to demonstrate the unique insights and ‘essence’ of how women with epilepsy experience their reproductive years: with rich descriptions emerging through the complex experience of risk, information and pregnancy planning. This study has the potential to extend our understanding of the needs of women with epilepsy during their reproductive years; drawing on the shared experiences of a group of women reveals future directions of enquiry, and shapes clinical practice to recognise the unique needs of this group.

Reference:

  • Benner, P (1994) The Tradition and Skill of Interpretive Phenomenology in Studying Health, Illness, and Caring Practices. In Benner (Ed.) Interpretive Phenomenology: Embodiment, Caring, and Ethics in Health and Illness. Thousand Oaks: Sage Publications

Acknowledgements:

Research has been funded by a fellowship grant from Epilepsy Research UK, with additional partial funding from Epilepsy Action, and HSA Charitable Trust

Abstract 3: Type 1 Diabetes and Adolescence: An exploration of lived experiences

Joy Spencer*, Dr. Helen Cooper, Dr. Beth Milton *PhD Student, School of Health Sciences, University of Liverpool, LIverpool, UK

Adolescence can be a turbulent and stressful time for young people and their families, as adolescents strive to develop an autonomous identity and increased independence. Living with Type 1 diabetes (T1D) provides an added pressure to this complex picture. Only 15% of under-fifteens are reaching the recommended blood-glucose levels of 7.5%, leaving them at risk of severe medical complications in later life((NICE, 2004). It is therefore important to interpret the lived experiences of young people living with the condition and their families, in order to better understand the factors affecting blood glucose control in this age group. Diabetes management is situated within the perspective of Complexity Science, which moves away from the traditional bio-medical view that ‘treatment + diet + exercise = control’, and allows recognition and integration of the many interacting psycho-social factors in a young person’s life that can affect diabetes self-management, including puberty, peer and family relationships, school, personal models of illness. The study takes an interpretive phenomenological approach to data collection and analysis. Interviews have been conducted with 24 adolescents and their parents/ guardians, along with the health professionals providing their care. The adolescents have also piloted a specifically-designed computer diary tool to monitor and assist with self-management. Ongoing data analysis focuses on 24 individual family units and their approaches to managing diabetes within the family. How adolescents see the meaning of their diabetes, and how diabetes impacts on their parents lives is to be interpreted and discussed. This study has the potential to improve our understanding of the problems adolescents and their families identify for self-managing diabetes. Findings from the study will be used to guide the development of appropriate educational and supportive interventions for young people and their families, and provide recommendations for future research. References National Institute of Clinical Excellence (2004). Type 1 Diabetes: Diagnosis and Management of Type 1 Diabetes in Children, Young People and Adults, NICE Clinical Guideline No. 15. Available from URL: www.nice.org.uk.

Older people with chronic conditions and carer perspectives on hospital readmissions in merseyside: a phenomenological approach. Roseline Henry-Nweye*,Paula Hodgson, Andrew Sixsmith and Andrea Litva *RGN; Department of Primary Care, University of Liverpool, L69 3GB, UK. Emergency readmission to hospital is one of the greatest pressures on the National Health Service (NHS). Along with other EU countries, the UK has an ageing population, with almost two thirds of acute hospital beds being occupied by people over the age of 65 years (DoH, 2000). The proportion of older people suffering from chronic disabling and co morbid disease(s) with poly-pharmacy, increases with age and is reflected in the rapid rise in recent decades in the number of multiple emergency readmissions. This ‘revolving door culture’ within the NHS places accident and emergency departments under tremendous clinical pressure resulting to psychological and physical disruption in individuals. However, previous research indicates that over forty percent of early readmissions and up to fifty-nine percent of all readmissions of people aged 65 years and over were thought to be avoidable. This paper will argue the need for a descriptive phenomenological approach to exploring the lived experiences of older people and their carers, aiming to reflect its complexities (Husserl 1931). The use of phenomenology is aimed to develop a rigorous study of subjective experience, of things as they appear, independent of and prior to any reflective interpretation. The objects of study in Primary Health Care are human beings that interact with the world. This paper presents the result of interim findings of indepth interviews conducted with 20 older adults and their carers to explore their perceived understanding for readmission. This is becoming increasingly important as patients’ and carers’ involvement in the context of health care management is widely recognised. Findings from the research have the potential to underpin primary care policies and health care interventions/supports for older people in community setting and minimise their readmissions to hospital.

References:

  • Department of Health (2000). The NHS Plan. London: HMSO MSO Husserl, Edmund (1931) Ideas: General Introduction to Pure Phenomenology. W. R. Boyce Gibson, trans. New York: Humanities Press

Abstract 4:  Understanding Issues of Moral Experience and Embodiment for Patients Suffering Renal Disease in Ireland

Dr. Ciara Kierans, Lecturer in Qualitative Health Research, Div. of Public Health, The Whelan Building, The University of Liverpool, Liverpool, UK

This paper will draw from ethnographic research exploring the lived experience and altered embodiment of end stage renal patients in Ireland. Writ large, it reflects a growing preoccupation and challenge among many social scientists of health and medicine to understand the capacities of new medical technologies to alter the margins of our embodiment and shape the experience of health, sickness and healing among individuals and within communities. Detailing the contributions of a phenomenological approach to chronic illness and the body, this paper will document the ‘moral experience’ (Kleinman 1999) of renal failure, a condition so heavily invested by biotechnology and shaped by the moral weight of altruism and donation. It will highlight two key characteristics which have emerged prominently as organizational properties of renal experience and the renal body: the issue of time as it is re-configured in illness trajectories, and sensation as the phenomenological starting point of chronic illness, that which grounds and shapes our experiences of a sick body. Both of these elements, I argue, have a key role to play in enabling us to truly engage in the moral experience of kidney failure: to understand what is at stake in a condition more defined by its biotechnical aspects and to move towards a more situated ethics of medical care. They, in turn, allow us to focus on the ways in which renal experiences are both shaped and obscured by the epistemological assumptions that guide biomedical narratives of kidney failure and the significance, then, of patients’ accounts in contradicting the idea of transplantation as a ‘therapeutic outcome’; an ‘endgame’; a ‘gift of life’. For health care provider, this paper facilitates a fuller understanding of the different ways in which suffering with kidney failure is constituted.

References:

  • Kleinman, A (1999) Experience and its Moral Modes. In The Tanner Lectures of Human Values. Grethe Peterson, ed., pp. 357-420. Salt Lake City: University of Utah Press