Table Of ContentHughes, Nicholas David (2011) Living with cancer in old age: a
qualitative systematic review and a narrative inquiry.
PhD thesis.
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Living with Cancer in Old Age: A Qualitative
Systematic Review and a Narrative Inquiry
Nicholas David Hughes
MSc., BA (Hons.)
Submitted in fulfilment of the requirements for the
degree of PhD. Medical Sociology
Medical Research Council Social and Public Health
Sciences Research Unit
College of Social Sciences
University of Glasgow
December 2010
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Abstract
„Living with Cancer in Old Age‟ is an exploration of older people‟s experiences of
living with cancer, using qualitative research methods. A qualitative systematic
review of international literature found that the experience of living with cancer
in old age is characterised by ambiguity. There are sources of suffering, imposed
by cancer itself, by treatments for cancer and by co-morbid disease. At the same
time older people have access to sources of comfort and strength, both internal
(attitudes of mental fortitude) and external (strong relationships with family,
friends, communities and health professionals) which mitigate the worst effects
of suffering. This literature study synthesised and interpreted findings from 11
studies covering a heterogeneous population of people aged 55-90+,
representing a wide range of cancers at different stages of progress and
treatment, across four countries (Israel, Canada, Sweden, USA) and using a
range of qualitative methods.
A subsequent empirical study using narrative methods focused on a more
homogenous population of older people aged 74-87, all resident in the same
geographical region (NW England), with one of the four most common cancers
(breast, colon, prostate and lung) at different stages of progress and treatment,
but treated at the same cancer centre. In this study a biographical/narrative
method of interviewing was used, in which 20 participants (13 men and 7
women) were invited to tell the „story‟ of their life both before and after
cancer. Interpretation of life history data reported by participants in this study
suggests that the overriding features of life with cancer for people in their 70s
and 80s are hope and hardiness, together forming a kind of resilience which
appears to be psychologically protective and which fosters a determination to
continue living positively, even at an advanced stage of illness. Whereas this
„fourth age‟ has been presented by sociologists as a life stage of inevitable
decline, findings from the two studies conducted in this doctoral study indicate
a quality of continuing robustness in the lives of some older people which runs
counter to common assumptions about their vulnerability and frailty.
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Contents
Introduction Page 8
Part One ‘Experiencing Cancer’: A Qualitative Systematic Review
Chapter 1 Search Strategy and Review Methods Page 15
Chapter 2 Analysis and Interpretation of Findings Page 49
Part Two ‘Cancer Stories’: A Narrative Inquiry
Chapter 3 Research design, ethical considerations, sampling Page 68
and recruitment
Chapter 4 Data generation and analysis Page 98
Chapter 5 Analysis and interpretation of findings (1): Page 120
First signs or symptoms of cancer and medical
Consultations
Chapter 6 Analysis and interpretation of findings (2): Page 143
Diagnosis and reaction
Chapter 7 Analysis and interpretation of findings (3): Page 156
Treatment
Chapter 8 Analysis and interpretation of findings (4): Page 181
Situating self in a life with cancer
Chapter 9 Discussion and Conclusions Page 203
Reference List Page 219
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Appendix 1 Research Protocol Page 239
Appendix 2 Participant Information Sheet: Long Version Page 253
Appendix 3 Participant Information Sheet: Brief Version Page 257
Appendix 4 Consent Form Page 258
Appendix 5 Link to peer-reviewed publication: Page 260
Hughes, N., S.J.Closs and D.Clark (2009). Experiencing Cancer in
Old Age: A Qualitative Systematic Review. Qualitative Health
Research, 19 (8): 1139-1153.
http://qhr.sagepub.com/content/19/8/1139
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
List of Tables and Boxes
Table 1.1 Provisional bibliographic sample and location source
Table 1.2 Summary of analytic techniques applied to
extracted findings from research reports
Table 1.3 Initial Appraisal Template/Reading Guide
Table 1.4 Summary data from provisional bibliographic sample
Table 1.5 Cross Comparison of Study Reports by Topic
Table 3.1 Cancer Stories: Demographic characteristics
Table 3.2 Cancer Stories: Disease Characteristics
Table 5.1 First Symptoms and Medical Consultation
Table 7.1 Treatments experienced by each participant
Box 1.3 Example of search including „filter‟ for qualitative research
Box 1.4 Journals searched manually
Box 1.5 Decision Rules for Extracting Findings from Qualitative
Research Reports for an Integration Study
Box 4.1 The developing „SQUIN‟
Box 4.2 Extracts from field texts regarding chosen method of
narrative interviewing
Box 8.1 Defining attributes of resilience
Box 9.1 Extracts from Reflective Research Journal considering the
challenge of linking two different studies
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Acknowledgements
Several organisations and many individuals have supported me in the course of
my doctoral research. Macmillan Cancer Support provided substantial funds in
the form of a four year part-time Research Fellowship. My employers in the
School of Healthcare at the University of Leeds have been generous in allowing
modifications to my teaching and administrative commitments. Members of the
International Observatory on End of Life Care at Lancaster University welcomed
me and housed me as a colleague over several years. At a late stage of my
research the Social and Public Health Sciences Unit at the Medical Research
Council, University of Glasgow accepted me as a postgraduate research student
and provided me with a much-valued additional supervisor.
I owe deep and abiding thanks to my first supervisor, Professor David Clark, who
has nurtured my skills and sustained my morale over the whole course of my
studies. My second supervisor, Professor Kate Hunt, added importantly to my
work with her enthusiasm for my project and her detailed, rigorous feedback.
Professor José Closs supported me with perceptive and insightful mentorship and
with substantial contributions to thinking about, and analysis of, my qualitative
systematic review. Professors Julia Addington-Hall and Sheila Payne provided
encouragement and feedback at various stages. Dr. Jim Elliott, Dr. Katie Booth
and Dr. Ziv Amir at Macmillan Cancer Support provided organisational
infrastructure for the conduct of my research, along with all-important funding
and an arena for dissemination.
Colleagues and fellow doctoral students at Lancaster University supported me in
many important ways, listening to my developing ideas and invariably expressing
interest in and enthusiasm for my work. I wish to record my gratitude and
thanks to: Zoe Cockshott, Dr. Iris Cohen Fineberg, Anthony Greenwood, Tom
Lynch, Phil Swarbrick, Dr. Mary Turner, Justin Wood, Dr. Michael Wright. Dr.
Maggie Mort, Dr. Anne Grinyer and Dr. Celia Roberts formed my review panel at
Lancaster University and gave me invaluable feedback. Special thanks to Dr.
Katherine Froggatt for encouraging me back into research activity some years
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
before beginning my PhD, and for kindly and trenchant critique at significant
points.
In research presentations and informal discussions, Dr. Chris Bailey, Dr. Jane
Hopkinson and Dr. Caroline Nicholson provided role-models of doctoral-level
intellectual inquiry. Dr. Janice Brown, Dr. Sue Duke, Dr. Joanna Hok and Dr.
Angie Rogers stimulated my thinking about narrative methods. Dr. Michelle
Briggs introduced me to the concept and practice of qualitative metasynthesis
and Dr. Liz McDermott furthered my learning about this method of systematic
review. Dr. Carrie Birch has maintained a strong interest in my work, while
conducting her own intensive research. Dr. Janet Hirst provided invaluable
support for creating an „effective writing environment‟ during crucial late stages
of finishing my thesis.
Many clinicians and staff at the research site for my empirical study provided
support and facilitated recruitment of patients, including: Dr. Wiebke Appel,
Diane Evans, Dr. Andy Hindley, Dr. Shabbir Susnerwala and Dr. Elaine Young. Dr.
Angie Parker provided invaluable guidance in gaining ethical and research
governance approval.
I wish to record very special thanks to all the men and women who agreed to
participate in my empirical research and to tell me their „cancer stories‟. I
dedicate this work to them and to their families, to my own extended family
and, more particularly, to my wife Kate Fleming and our children, Róisín Hughes
and Séan Hughes.
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
Author’s Declaration
I declare that, except where explicit reference is made to the contribution of
others, this thesis is the result of my own work and has not been submitted for
any other degree at the University of Glasgow or any other institution.
Signature:
Printed name: Nicolas David Hughes
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LIVING WITH CANCER IN OLD AGE:
A QUALITATIVE SYSTEMATIC REVIEW AND A NARRATIVE INQUIRY
INTRODUCTION
This thesis reports the methods and findings of a research inquiry which
investigated older people‟s experiences of living with cancer. In this Introduction
I set out the background to two studies which I conducted to answer the
overarching research question: „What are the subjective experiences of older
people of living with cancer?‟ I explain the research problem and the aim of my
studies and indicate the research questions which guided my inquiry. I make
some observations on the nature of cancer in older age and on specific features
of ageing in modern society. I close the Introduction with a chapter-by-chapter
summary of the structure and contents of the thesis.
Research Problem
Despite increasing longevity and generally improving health in Western
populations the process of ageing is associated with greater incidence of disease
and illness, in particular of degenerative conditions such as musculo-skeletal
disorders, ischaemic heart disease, neurological impairments and cancers.
Comorbidity is common in individuals aged 70 and older (Stevenson et al 2004;
Extermann 2000) and cancer has its highest incidence in older populations.
There is extensive literature reporting the incidence and prevalence of cancers
in older age groups along with approaches to treatment and the effects and
management of comorbidity (Bennahum et al 1997, Extermann et al 1998,
Satariano & Silliman 2003). However, the subjective perceptions of older
individuals undergoing the experience of cancer remain largely unknown.
Aim of the research
Approximately half of all cancers diagnosed in the United Kingdom are in people
aged 70 or older (NCIN, 2008). The aim of my research inquiry was to investigate
the experiences of older people of living with cancer. My specific focus of
interest was the experience of people aged 75 and older, since this appears to
be a hidden population whose experiences are largely unknown. Individuals
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