The Experience of Cohabiting Couples

UNIVERSITY OF CALGARY
Sexual Health, Relationships and Spinal Cord Injury:

The Experience o f Cohabiting Couples
by
Blaine Richard Beemer
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE
DEGREE OF MASTER OF NURSING
FACULTY OF NURSING
CALGARY, ALBERTA
JANUARY, 2006
Blaine Richard Beemer 2006
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
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Abstract
Sexuality is an important aspect of overall human experience. Spinal cord injury (SCI)
causes sudden and serious challenges to relationships and sexuality that are experienced
by both members of a couple. Research in couples sexual response to spinal cord injury
has often emphasized quantitative inquiries into post-injury physiological functioning,
and surveys that may not capture the complexities of couples adaptation. Three
cohabiting couples that have remained together after the males SCI were interviewed
conjointly, separately, then conjointly again to hear the story of their sexual and relational
experiences. The audiotapes of the interview and interviewers notes were transcribed to
form the text for analysis. The tradition of philosophical hermeneutics was used to
interpret the text to produce new understandings of the interviewees experiences. These
research findings may help guide further research and clinical counselling of couples
experiencing similar health challenges.
111
Acknowled gements
I wish to thank the many individuals and groups, both personal and professional,
who contributed to the completion of this thesis. First of all, I would like to thank those
brave couples that gave of themselves and their time as interviewees. Their courage and
patience with me is greatly appreciated, and their lives are an inspiration. Staff at the
Canadian Paraplegic Association was instrumental in finding some of these couples.
The Faculty of Nursing, University of Calgary, has been helpful and generous at
every turn. I would particularly like to thank Dr. Dorothy Hughes, Pat Jolly, Annette
Lane, Dr. Sandi Hirst, and Dr. Lorraine Watson. Staff at SANHRRU has been extremely
helpful, including Barb Colvin, Caroline Carr, and Dr. Sheila Evans. Generous financial
support from the Faculty of Nursing, The Province of Alberta, the Canadian Federation
of University Women (Calgary Region), and the Faculty of Graduate Studies is gratefully
acknowledged.
Many of my previous colleagues have provided ongoing support and assistance.
At GF Strong Rehabilitation Centre in Vancouver Kate McBride, Barb Lawrie, Marci
Ekland, Chris Zarowski and Marie Carlson have been tremendously helpful, and if it
were not for this stint of higher education, I imagine I would quite contentedly be
working with them still. At the BC Centre for Sexual Medicine Darlynne Gehring MSW,
Dr. Stacy Elliott, Dr. Rosemary Basson, Dr. Oliver Robinow and Dr. Ron Stevenson
showed tremendous patience for me as a sexual health neophyte, and they have continued
to inspire me over the years. Now ten years later I may be a little less neo but I feel like
I am still only a beginner in my understanding.
iv
Dr. Lori Limacher has been everything a supervisor should be: inspirational,
informative, supportive, and accommodating of my numerous eccentricities. If any merit
can be found in this paper, it is in substantial part due to her attention to it. Committee
members Dr. Nancy Moules and Dr. Shaniff Esmail are marvellous professionals and it
has been a privilege to work with them. Nancys joyful sense of the human condition has
inspired me immensely, and Shaniff s clarity and pragmatism have been most welcome.
It is also with sadness that I report the passing away of Dr. James Gripton, my external
examiner, shortly after my thesis defence. His service to this project was his last
academic service in a life that enriched thousands. I am honoured to be the recipient of
that service.
I have been blessed with great friends who have taught me about personal giving
and compassion, and I consider them part of my family. They include Darrell Gilmour,
Sandro Reffo, Launette Rieb, Su Willson, Morley Chalmers, Catharine Rathbun Yeshe,
Nina Sangra. I wish I could have spent more time with you over the past while but you
were all never far from my thoughts.
My family has been tremendous throughout this whole process. My brother Ward
and my brother Matt and his wife Liz have stood beside me.
Finally, I would like to thank my father, Richard C. Beemer. His love of
knowledge has been my greatest academic inspiration over the years; his generosity has
overwhelmed me; his sense of personal integrity is something I strive for.
Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission.
Dedication
I dedicate this thesis to my late mother, Barbara. I wish she could have been here for this.
vi
Table of Contents
Approval Page................................................................................................................................ii
Abstract......................................................................................................................................... iii
Acknowledgements...................................................................................................................... iv
Dedication..................................................................................................................................... vi
Table of Contents........................................................................................................................ vii
List of Symbols, Abbreviations and Nomenclature..................................................................x
CHAPTER 1: INTRODUCTION................................................................................................ 1
My Path to This Study.............................................................................................................. 1
Philosophical Assumptions of the Researcher...................................................................... 3
Expected Benefits of This R esearch.......................................................................................4
CHAPTER 2: SPINAL CORD INJURY AND SEXUAL H EA L TH ................................... 5
Physical and Social Consequences of SCI.............................................................................5
Medical Treatment of Sexual Function in S C I.................................................................6
Sexuality Defined.................................................................................................................. 8
The Medicalization of Sexual L ife .........................................................................................9
Spinal Cord Injury and Marital Stability............................................................................. 10
Unanswered Questions in SCI Couple Rehabilitation....................................................... 10
Sexual Health and Its Place in Human W ellness................................................................ 11
CHAPTER 3: STUDYING SEX: THE CHALLENGES OF SEX R ESEA R C H .............. 14
Premodem Sexual T exts.........................................................................................................15
Perils of Historical Research in Sexuality........................................................................17
Who Is Answering? The Problems of Sample Bias in Sex Research.............................. 18
Volunteer Bias in Nonsexual Human Research.............................................................. 19
Is the Bar Put Higher for Sex R esearch?.............................................................................22
How Does This Current Study Fit Into the Method of Inquiry?.......................................24
CHAPTER 4: SEXUAL INTERVIEW ING............................................................................26
Interview Methods in Acute Care Settings..................................................................... 27
Clinical Sexual Interviewing............................................................................................. 28
Why is Sexual Interviewing So D ifficult?............................................................. 28
Couples Counselling and Sexual Interviewing...............................................................30
Conjoint or Separate Clinical Sexual Interviews-Or B o th ?................................ 30
Qualitative Interviewing and Sexual Issues R esearch..........................................33
Sexual Interviewing and The Present Study................................................................... 34
CHAPTER 5: SYSTEMS THEORY AND ITS APPLICATION TO SEX AND COUPLE
PRO BLEM S................................................................................................................................ 35
The Beginnings of Clinical Sexology.................................................................................. 35
The Systemic Approach in Action: Clinical Application..................................................37
The Relevance of Systems Theory to This Research Study ......................................... 39
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CHAPTER 6: RESEARCH M ETH O D ................................................................................... 40

A Qualitative Research A pproach........................................................................................40
Philosophical H erm eneutics..................................................................................................41
Key Concepts for Philosophical H erm eneutics..............................................................42
Philosophical Hermeneutics and the Concept of T radition................................. 42
Preunderstandings and the Hermeneutic Researcher............................................43
Reflexivity and the Hermeneutic C ircle.................................................................44
Research Process..................................................................................................................... 46
Recruitment of Interviewees............................................................................................. 46
Sample Size and Com position..........................................................................................48
The Interview V olunteers.........................................................................................48
Interview er...........................................................................................................................49
Interview M ethod................................................................................................................49
Data A nalysis...................................................................................................................... 50
Ethical Considerations........................................................................................................... 51
Ethical A pproval.................................................................................................................51
Debriefing and Mitigation of Potential H arm ................................................................. 52
Post-Interview Check With Interviewees ..................................................................... 52
Data Collection and Storage............................................................................................. 52
CHAPTER 7: INTERPRETIVE DESCRIPTIONS................................................................ 53
Couple #1: Jen and R ick........................................................................................................ 53
Couple #2: Curt and R ose
.......................................................................................... 61
Couple #3: Brad and R o b in ..........................
67
CHAPTER 8: INTERPRETIVE A N A LY SIS.........................................................................72
The Course of Sexual Rehabilitation................................................................................... 72
Sexual Rehabilitation and its Relation to Physical Function........................................73
Staying Together.................................................................................................................76
The Stigmatization of Disability Relationships.....................................................77
Theories of Bonding and Couple Cohesion........................................................... 78
Power, Relationships, and SCI................................................................................. 83
The Struggle to Again Be Sexual.............................................................................85
Mobility and the Sense of M asculinity............................................................................ 88
Parenting, Authority, and Sense of the Male Self................................................. 90
The Isolated Nature of Sexual Rehabilitation.................................................................93
Attachment and Intim acy...................................................................................................93
Role Contamination and Preservation of Eroticism....................................................... 94
Life With The New Pharm acology.................................................................................. 96
Sexual Role Evolution in the Couple Struggling With D isability............................... 99
Other-Centredness in The Sexual Evolution of SCI Couples............................ 100
CHAPTER 9: METHOD AND MEANING.......................................................................... 103
The Systemic Worldview And The Way of SCI C ouples...............................................103
Interviewing for Care Versus Interviewing for Research................................................ 103
viii
Research Interviews: Talking About Sex Can Be S e x y .................................................. 104

Conjoint and Individual Interview F orm at........................................................................107
CHAPTER 10: ETHICS AND INTEGRITY OF THE COUPLES JOU RN EY
109
CHAPTER 11: CONCLUSIONS..................................

113
Clinical Significance: Sexuality and Spinal Cord Injury with Couples......................... 113
The Spinal Cord Injured M a le ........................................................................................ 113
The Uninjured Partner...................................................................................................... 115
The Couple......................................................................................................................... 118
Research and the Systemic Approach............................................................................ 121
Questions That Remain To Be Answered.......................................................................... 122
Challenges and Choices for the Future.............................................................................. 123
Epigraph..................................................................................................................................124
REFERENCES.......................................................................................................................... 125
APPENDIX A: RECRUITMENT PO S T E R .........................................................................157
APPENDIX B: SAMPLE INTERVIEW QUESTIONS...................................................... 159
APPENDIX C: INFORMED CONSENT.............................................................................. 161
APPENDIX D: CALGARY RESOURCE G U ID E..............................................................166
APPENDIX E: LETTER OF UNDERSTANDING.............................................................167
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List of Symbols, Abbreviations and Nomenclature

BCCSM: British Columbia Centre for Sexual Medicine
CPA: Canadian Paraplegic Association
CHREB: Conjoint Health Research Ethics Board
DHEAS: dehydroepiandrosterone
ED: erectile dysfunction
ICI: intracavemosal injection
cGMP: cyclic guanosine monophosphate
L: lumbar vertebral level
MS: multiple sclerosis
NO: nitrous oxide
PDE5: phosphodiesterase-5
S: sacral vertebral level
SCI: spinal cord injury
SHS: Sexual Health Service
T : thoracic vertebral level
VH: Vancouver Hospital
WHO: World Health Organization
1
CHAPTER 1:
INTRODUCTION
The purpose of this study is to explore the sexual and relationship experiences of
committed couples after the man suffers a spinal cord injury (SCI). This was done using
semi-structured, in-depth interviews with three couples. The results of those interviews
were interpreted employing philosophical hermeneutics (Gadamer, 1989) in a way meant
to portray the uniqueness of each couples journey. The transcripts were analyzed for
their clinical significance, and for their implications in the broader field of human
sexuality.
My Path to This Study
The main character Malachi Constant from Kurt Vonneguts novel Sirens o f Titan
was casually asked by another character, How did you get here? I was a victim of a
series of accidents...as are we all, was his response. I mention this because it is
tempting, in any research project, to retrospect more intentionality and shrewd judgement
than really existed during the process. Resisting this temptation, I think it is important to
describe, briefly, how I came to the place to study sexuality in disability.
My sexuality studies originally came about not as an academic decision but as a
vocational one. About 10 years ago, after a 6-month sabbatical in Australasia, I needed a
job, and the role of amalgamating and coordinating an expanding sexual health clinic
(now named the BC Centre for Sexual Medicine, [BCCSM]) in the Department of
Psychiatry at Vancouver Hospital became available. I knew some of the clinicians
involved through committee involvements and a previous ward position in emergency
2
psychiatry but I did not know of their expertise in clinical sexuality. When I found out a
little more, my curiosity, not to mention my sense of the quirky, made this sexual health
position the interesting choice over a position in general psychiatric outpatient care.
As the amalgamation project continued it became that the clinic was constituted
of an assemblage of some world-class talents in sexual health. A small but dedicated
network of like-minded clinicians had developed over the past 30 years, largely due to
the inspiration and early efforts of psychiatrist William Maurice (recently retired from the
University of British Columbia [UBC]) and George Szasz (long-retired from UBC, and
recently awarded the Order of Canada for his lifes work in sexual medicine). Almost
every clinician in the clinic was trained by these two pioneers, and their early writings
(Maurice, Stuart, & Szasz, 1976; Szasz, 1970, 1971; Szasz, Paty, & Maurice, 1984) are
written for educators, physiotherapists, nurses as well as physicians. In one sense, these
writings set the context of Canadian sexual health care as a multidisciplinary undertaking,
which was echoed in the programme I coordinated. It was here that I first gained the
opportunity to sit in on sexual health interviews, and begin to provide follow-up care to
these patients. In time, I had the opportunity to get involved in teaching, continuing
education and research. Unfortunately, economics and departmental politics ultimately
trumped good care, and all nonphysician positions in the clinic were cut 8 years after the
inception of the new clinic-including my position.
This research is about the sexual and relationship experiences of couples that have
stayed together after SCI, but my clinical experience coming into this project leads me to
note that the neurological impairment may not solely define the challenges they face. As
we shall see, many of the problems and solutions arrived at by these couples are not
exclusive to their injury or health status. Therefore, I have thus chosen to approach the
story of these couples from a broad perspective: not exclusively as a disability
phenomenon, nor as primarily a mental health issue, nor as primarily a medical
functioning matter. I am comfortable doing this also in part because no particular
paradigm has gained dominance when discussing sexual matters (Kleinplatz, 2003;
Wiederman, 1998). There is no single accepted lens for viewing sexual health concerns.
Consequently, my literature review casts a rather broad net.
Philosophical Assumptions of the Researcher
Through clinical and academic experience, I have developed some prior
understandings about inquiry in the area of sexuality and health care. First, sexuality is
important to people whether they express it overtly or not. Second, sexuality is not an
isolated element in a persons life, but affects their mood, their perception of choice and
freedom, and their overall sense of self. Third, although physical status cannot be
ignored, peoples beliefs and cognitions about their disability, about their partner, about
their sexuality are significant drivers of their behavior (Annon, 1976; Crowe & Ridley,
2000; Hawtin, 1982; Wright, Watson, & Bell, 1996). Fourth, method, the researcher, and
the data are inextricably bound in a shifting dialectic that produces mutual influence
that ultimately affects the content of any research, and awareness of that dance is an
essential component of mature understanding (Gadamer, 1989). Fifth, the context and
historicity of individual experience does not preclude deep intersubjective understanding
by others; thus, the arising of a more general knowledge from interpretation of those
individual experiences is possible (Draper, 1996; Fleming, Galdys, & Robb, 2003;
Gadamer, 1989; Geanellos, 2000). We can understand each other, and we can learn by
that (and their) experience.
Expected Benefits of This Research
I hope that this study helps produce some deeper and different understandings of
the complex interactions in the sexual and romantic lives of committed couples facing
SCI. The study was undertaken with the hope of generating new ways of approaching the
clinical care of sexual health matters for SCI couples. Also, this research has the potential
to direct further research into the way some couples have successfully remained together
after SCI. This could improve the ability to support couples through the experience of
SCI and may help in the delivery of clinical sexuality counselling and education in other
disabilities. Furthermore, inasmuch as these couples have experienced, in a dramatically
accelerated fashion, some of the sexual changes that couples undergo in the natural
course of their relationship, their stories may have much to tell us about the sexual
evolution of non-injured couples.
All people can be thought of as having a sexual self, although the degree to which
each person wishes to inhabit that self varies. We often forget that our patients are the
same way as well. It is hoped that this research helps to honour that sexual self in all of
us.
CHAPTER 2:
SPINAL CORD INJURY AND SEXUAL HEALTH
Physical and Social Consequences of SCI
Spinal cord injury is a significant health problem in Canada. It is estimated that
over 1,000 new spinal cord injuries occur each year, and that over 36,000 persons in
Canada live with this condition (Canadian Paraplegic Association, 2000). Spinal cord
injury can affect multiple physical functions, including bladder and bowel continence,
vascular and autonomic difficulties, problems with temperature regulation, and of course
motor and sensory functioning (Fowler, 1999; Porth, 2002).
Spinal cord injury is associated with enormous social cost, and usually leads to
years of unemployment and occupational retraining for the sufferer (DeVivo, 1997;
Krause, 2003). Mortality and morbidity continues to improve (DeVivo, Krause, &
Lammertse, 1999), though significant numbers of the injured will experience permanent
changes to neuromuscular function with consequent challenges to their rehabilitation.
Sexual changes are often cited by patients as one of their primary concerns during
SCI rehabilitation (Breen & Rines, 1996; Byfield, Brown, La Favor, Murphy, Laud et al.,
1999; Widerstrom-Noga, Felipe-Cuervo, Broton, Duncan, & Yezierski, 1999). Although
patients express concern, their stated satisfaction with their sexual life in the earlier stages
of recovery is often low (White, Rintala, Hart, Young, & Fuhrer, 1992). Both dating and
committed couple relationships have their own challenges for those experiencing
disability (Howland & Rintala, 2001; Shuttleworth, 2000).
6
Medical Treatment o f Sexual Function in SCI
In terms of reproductive and physiological sexual function in spinal cord injured
men, the best of modem technology has been brought to bear in attempts to return some
semblance of previous physiological sexual response (Denil, Ohl, & Smythe, 1996;
Monga, Bemie, & Rajasekaran, 1999), and new medications have sometimes proved
quite beneficial in mitigating the effect of SCI on erectile response (Behnegar & Marion,
2002; Hultling, Guiliano, Quirk, Pena, Mishra et al., 2000). While these new
pharmacological agents have proven a boon to some patients, the magnitude of
physiological effect is commonly dependent on the location and severity of the injury
(Monga et al., 1999).
Even when physiological function is treated medically, the clinical task of sexual
rehabilitation has not been completed. When medications fail to lead to the expected
sexual outcomes, the emotional distress that occurs with treatment failure is often quite
great (Holzapfel, 1998; Tomlinson & Wright, 2004). Additionally, it has been reported
that relief of sexual dysfunction in one partner can lead to unexpected new relationship
difficulties (Dickes & Strauss, 1980). From a medical standpoint, these apparently
paradoxical outcomes are inexplicable; however, when looked at from a systemic
perspective, one might theorize that the interactional nature of the couple may be more
significant than the purely functional elements of the individuals (Sanders & Tomm,
1989; Wright & Leahey, 2000). Clearly, medications are anything but a panacea for men
with spinal cord injury, and there remain significant sexual rehabilitation challenges that
are not simply related to restoration of physical functioning.
7
It is a largely unexamined assumption that the quality and mutual satisfaction
found in a sexual relationship is predominantly determined by the working of the body
parts customarily associated with sexual activity. It is not surprising, for instance, that
Duffy (1995) found that the healthy partner in a couple adjusting to the effects of
Alzheimers experienced a reduction in satisfaction after disease onset, and that
Greenbergs (1997) documented the negative relationship between disease duration and
partner sexual adjustment satisfaction in couples with multiple sclerosis (MS).
Interestingly, however, the expected inevitable negative relationship between disability
and sexual satisfaction apparently does not always occur, or the results are sometimes
more equivocal. For instance, Majerovitz and Revenson (1994) found that, for couples
where one partner was experiencing rheumatic disease, sexual satisfaction was generally
preserved. As well, Samelson (1999), studying couples with MS, found that disease
severity was not an influential predictor of sexual relating in couples. Also, a survey of
Swedish women who had undergone vaginal surgery for cancer showed that their
satisfaction with some aspects of their sexual relationships was higher than able-bodied
controls (Bergmark, Avall-Lundqvist, Dickman, Henningsohn, & Steineck, 1991). Many
SCI couples are surprisingly active sexually, considering the profundity of the disability
(Phelps, Albo, Dunn, & Joseph, 2001).
The foregoing is not to suggest that serious disorders such as spinal cord injury,
cancer, MS and rheumatoid arthritis do not commonly compromise sexual function, nor
that couples facing these challenges should expect to experience sex as usual after a
significant traumatic injury or chronic disorder. Also, there may be differences in the
experience of sexual recovery in progressive or remittent conditions such as MS
8
compared to more stable health problems with sudden effects (Barrett, 1999; Koch,
Kralik, & Eastwood, 2002; McNeff, 1997). However, there does seem to be evidence of a
less-than-perfect fit between physiological sexual functioning and sexual satisfaction in
relationships for many couples. In other words, it is not news that some couples
experience negative sexual consequences of injury; it is news that some couples seem to
navigate these waters, largely on their own, and find a new and fulfilling equilibrium.
This has implications for sexual counseling of the couple challenged by SCI.
Sexuality Defined
Despite that most researchers and clinicians would consider sexuality to be a
specialized area from a research or treatment standpoint, the topic of sexuality itself is
enormously broad. The World Health Organization (2002) defined sexuality as:
a central aspect of being human throughout life and encompasses sex,
gender identities and roles, sexual orientation, eroticism, pleasure,
intimacy and reproduction. Sexuality is experienced and expressed in
thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices,
roles and relationships.
Of utmost importance here is that sexuality is not solely about behavior-and
sometimes not about overt sexual activity at all (as in the fevered keystrokes of secret
cyber-lovers who will never meet, for instance). As a corollary, some behaviors and
events (nocturnal and spontaneous erections, for example) which many people cannot
imagine as nonsexual, might best be considered as physiologic but for practical purposes
not sexual (Schmidt & Schmidt, 2004; Suh, Yang, & Clowers, 2003). Further
complicating our understanding of sexuality is that its relative importance for people vary
incredibly (Blumberg, 2003; Lieblum, 2002; Lunde, Larsen, Fog, & Garde, 1991;
Sloggett & Herold, 1996) and across the life cycle (S. B. Levine, 2003; McCarthy, 2001;
9
Schmitt, Shackelford, Duntley, Tooke, Buss et al., 2002). Additionally, sexuality to an
enormous degree has a broader social component (Gripton & Valentich, 1986). Thus
woven into our culture, sexuality is about mind and body, and events acted out or
sometimes just imagined.
The Medicalization of Sexual Life
Notwithstanding that technical understanding of sexual physiology has increased,
a healthy dialogue in the scholarly literature has warned about the medicalization of
sexual therapy (Kleinplatz, 2003; Schover & Leiblum, 1994; Tiefer, 1998). This
medicalization takes several forms. First, for the therapeutic community, it represents the
risk of compartmentalizing sex as equivalent to function: context and meaning are
stripped from the act and sex becomes wholly equated with the completion of
physiological events, such as specific sexual manoeuvres, erection, ejaculation and
orgasm. Lack of completion of these events is then seen as a disorder requiring medical
intervention, when in fact what has occurred sometimes is an understandable and
nonpathologic (though perhaps unsatisfying) outcome (Basson, 2003). Second is the
development of false corollaries: if a pill can increase sexual desire, for instance, then
was that previous level of desire, in all its complexity, and perhaps appropriateness, now
defined as a pathology? Clearly, the therapeutic literature is dominated by research and
discussion on dysfunctions (Edwards & Coleman, 2004), and there is comparatively far
less written on the meaning of sexuality for patients and their partners, or how they
navigate their sexual lives in the presence of dysfunctions, despite that sexual problems in
10
one partner often have deleterious effects on the sexual satisfaction of the other partner
(Sjogren Fugl-Meyer & Fugl-Meyer, 2002).
Spinal Cord Injury and Marital Stability
Some research has been done on the impact of SCI on marital stability. The
relational implications of spinal cord injury are clearly daunting: as Kreuter (2000) wrote,
it can be assumed that there is no greater test of a marriage than that presented by a
spinal cord injury (p. 3). Considering the profound impact of SCI on a couples
situation, one would expect post-injury divorce rates to be extremely high, and early
research indeed suggested this (DeVivo & Richards, 1992). However, divorce statistics
comparisons are hampered by changing covariables, such as the effect of aging, a
changing divorce rate in the general population; other research (El Ghatit & Hanson,
1975) is more equivocal about the deleterious impact of SCI on marital stability. Clearly,
a great deal of adjustment is required on the part of the partner, and this adjustment, if it
occurs successfully, does not happen quickly or easily (Chan, Lee, & Lieh-Mak, 2000).
Unanswered Questions in SCI Couple Rehabilitation
Although a certain amount has been written about the effect of SCI on couple
relationships (Captain, 1995; Chan et al., 2000; Duscharme, 2001; Esmail, Esmail, &
Munro, 2002), this area is underrepresented in the literature, and rich descriptions of the
qualities existing in these enduring relationships are somewhat lacking. It is unclear, for
instance, if the components that are thought to constitute perceptions of intimacy in
nondisabled couples, such as self-revelation and sharing (Waring & Chelune, 1983), or a
high degree of communication (Haavio-Mannila & Kontula, 1997) are the same for both
disabled and spinal cord injured couples. Members of nondisabled couples sometimes
hold conflicting individual views about what constitutes intimacy in their relationship
(Monturo, Rogers, Coleman, Robinson, & Pickett, 2001); do spinal cord injured couples
hold a more congruent view of what intimacy means?
Many other questions need to be asked about these couples that survive SCI.
What happens to perceptions of power within the relationship after SCI? Although issues
of relational power are discussed in general in the popular literature (Gilligan, 1982), and
is a central element in feminist research (Pollis, 1988; Racine, 2003) and critical
hermeneutics (Byrne, 2001b); what, if anything, happens to power dynamics in couples
that successfully stay together after profound physical insult to one partner? My clinical
experience with SCI couples suggests that this aspect of couple coping is highly
unpredictable and often paradoxical, and questions around perception of power beg to be
asked in an appropriate research setting.
Sexual Health and Its Place in Human Wellness
Despite the variety of definitions and approaches, sexual health has long been
recognized internationally as an important component of overall human health (Edwards
& Coleman, 2004), clinical care in general (Annon, 1976), and nursing care specifically
(Gamel, Hengeveld, Davis, & Van der Tweel, 1995; Hanlon, 1975; Hogan, 1985; Peck,
2001; Savage, 1990). Sexual health is promoted and supported by health-care
professionals not only through treatment but through a foundational basis of ethics that
recognizes autonomous choices made by patients and requires a positive and respectful
approach to sexuality and sexual relationships as well as the possibility of having
12
pleasurable and safe sexual experiences, free of coercion, discrimination, and violence
(Wagner, Bondil, Dabees, Dean, Fourcroy et al., 2005, p. 167).
However, there is little agreement on theories of sexuality as an area of inquiry and
how to approach research in this area (Kleinplatz, 2003; Weis, 1998; Wiederman, 1998).
In some circles, healthy sexuality is defined by policy-makers as having no sex at all, as
in the American federal advocacy of abstinence-only education policies for unmarried
individuals-with unfortunate medical consequences for many patients (Bruckner &
Bearman, 2005; Fortinberry, 2005).
Relative to other aspects of health, societal forces have somewhat delayed the
development of knowledge in this area (Sandfort & Ehrhardt, 2004). It appears that
clinical education in sexuality for front-line health-care workers is often patchy (Barrett
& McKay, 1998; Booth, Kendall, Fronek, Miller, & Geraghty, 2003), similar to sexuality
education in schools generally (Klein, Goodson, Serrins, Edmundson, & Evans, 1994).
Moreover, there is still an unclear relationship between sexuality education in clinicians
and its effect on actual clinical practice (Kautz, Dickey, & Stevens, 1990; Kendall,
Booth, Fronek, Miller, & Geraghty, 2003; Lewis & Bor, 1994). These shortcomings may
have often combined to lead to inadequate sexual health care for patients in general, and
disabled patients in particular (Kaufman & Silverberg, 2003; Mackelprang, 1993; Sipski
& Alexander, 1997; Spica, 1989).
Thus, we can see that a number of currents are presently at work. While survival for
spinal cord injured patients has improved (Hartkopp, Bronnum-Hansen, Seidenschnur, &
Biering-Sorensen, 1997; Zeilig, Dolev, Weingarden, Blumen, Shemesh et al., 2000), and
treatment options have improved, SCI appears to still take its toll on cohabiting
relationships. As well, there is the danger that treatment options will become treatment
obligations, redefining sexuality as primarily about physiological function, particularly
genital intercourse. Finally, it appears that the important sexual health needs of patients
are under-addressed by health-care professionals (Glass & Soni, 1999; Maurice, 2000).
In this study I examined the lived experience of couples that have faced SCI and
stayed together as a couple. These couples can tell us about how they navigated through
this significant health challenge, and what has become of their romantic and sexual lives
since the injury. I am interested in the way these couples have approached sexual
rehabilitation and in the way their contact with professional caregivers might have
affected their current sexual and romantic situation. This may provide better insights into
how to care for similar couples in a more effective way.
14
CHAPTER 3:
STUDYING SEX: THE CHALLENGES OF SEX RESEARCH
Studying human sexuality in all its manifestations presents unique challenges for
the researcher. Part of the challenge is scientific, inasmuch as sex research (as with some
other areas of Western science) has suffered from a surfeit of commentary and a paucity
of actual observation (Milligan, 2001); as a result, controversies over basic questions of
meaning and methodology are pervasive in sex research. Another challenge to sexuality
research is that a coherent theoretical basis for scholarship has not arisen (DeLamater &
Hyde, 1998; Kleinplatz, 2003; Wiederman, 1998), and instead a patchwork of theories
from a variety sources have been employed.
A further challenge has been that the treatment of clinical sexual problems has not
fallen to one specific profession. Social workers, psychologists, physicians from
numerous specialties, family therapists, nurses, and religious advisors all sometimes may
attempt to help people complaining of sexual difficulties. With both the expertise to help
patients and the comfort to actually address these issues with patients distributed in this
way, clinical sexuality, and as a consequence research in sexuality, is a disciplinary
orphan. Research is hard to do, and when interest, expertise, and potential financial
resources are scattered across many disciplines and departments, research is less likely to
occur.
Finally, part of this challenge is deeply personal. Everyone has beliefs about sexwhat is common for people to do sexually (and more important, what is unusual); what is
socially acceptable, what is pleasurable, and most of all, what is normal. When the social
15
implications of research are potentially disruptive, as in much sex research, academic
timidity can take over (Kimura, 1999).
Premodern Sexual Texts
Explicit commentaries on sexual activity date back at least as far as the Kama
Sutra, written about 300 AD (Puri, 2002). Primarily a spiritual treatise, it set out a
detailed typology of genital anatomy and psychosexual temperament, and then rated the
relative advisability of sexual union between these various types. At the same time, the
Kama Sutra is also astonishingly pro-pleasure in a way that has no analogue in Western
society until present times. It is also one of the first written records describing premature
ejaculation and female sexual pain (Vatsyayana, 1963). Although first published in
England in 1876, it was so contrary to Victorian sexual mores that it was kept under lock
and key in a special collections area and was not officially available until 1963 (AstburyWard, 2002). A text contemporary to the Kama Sutra, the Atharva-veda (Bloomfield,
1896), contains a list of charms and prayers to fend off illness and evil, or secure potency.
These texts may be the first to assert that seminal emissions weakened the male
constitution (Astbury-Ward, 2002), which is an idea that has reappeared continually in
Western thought since that time (Rathus, Nevid, Fischner-Rathus, & Herold, 2004), and
one that significant numbers of patients bring to therapy today.
Around the same time as the Kama Sutra, Chinese traditional medicine (TCM)
had developed manuals on sexuality, largely drawn from Taoist writings. These writings
were very positive regarding the health benefits of sexual activity and its function in
balancing the five elements of human physiology in a way that contrasted with Christian
16
documents on the subject (Chandross, 1994). Detailed drawings of genitalia found in
these texts strongly suggest that direct observations of the genitalia were made. More
tellingly, these observations were rendered with a realism of style that suggests that these
matters of the flesh were not severely cleaved off from mainstream society (Chandross,
1994).
Ancient Persian medical manuals had much to say on the matter of sexual
disorders. It recognized the overall effect of physical fitness on sexual health, the
interaction of mood disorders with sexual functioning, and deleterious effects of
excessive alcohol on erections (Ghadiri & Gorji, 2004). Persian physicians employed an
extensive sexual pharmacopoeia and also prescribed exercise, diet, and the viewing of
erotica. Ghadiri and Gorji (2004) asserted that these medical texts were, at the time, the
most-read medical texts throughout Medieval Europe.
Christianity and Christian societies have had a particularly problematic
relationship to sexuality. Perhaps due in part to the manner of its saviours death,
Christian theology has largely elevated the spiritual over the physical, and has often seen
the body as an impediment to spiritual fulfilment rather than as a vehicle to that
fulfilment (Seidler, 1987). Sexuality, the most carnal of human activities, has consistently
raised the disapproval of religious leaders in Western society, and sexual asceticism has
functioned as the implicit sexual ideal for many centuries. In her wonderfully titled
Eunuchs fo r Heaven, Uta Ranke-Heinemann (1990) traced the antisexual attitude of the
Catholic church to the schedule of sexual abstinences imposed by Paul on the early
devotees of the Christian church, through Augustines Gnostic disgust with his distraction
by sexual lust, leading to centuries of promotion of castration for males, and through to
17
the elevation of the doctrine of the Immaculate Conception. These features of Western
societies, dominated by Catholicism and later joined by Protestantism, has undoubtedly
contributed to the delay in research on sexual issues.
As a consequence, sex was banished from polite company, exiled from any
connection to the spiritual realm, and not considered explicitly the object of scientific
attention. Sex in Western societies has been generally relegated to the symbolism of art,
as in the poetry of 16th century author John Donne (1956) or to the backwater of the
bawdy, such as The Canterbury Tales (Chaucer, 1342-1400).
Perils o f Historical Research in Sexuality
Writers can sometimes be almost comically tendentious in their approach, and
highly selective in citing sources in order to establish their thesis. For instance, Kahr
(1999) attempted to establish the dominant cultural sexual norms in prehistoric European
society, using snippets of anonymous poetry to assert that that society was a sexual
chaos (p. 773) of unfeeling infanticide, murder, homosexuality, preferential buggery,
pedophilia and pederasty. While not denying that these practices existed, this selective
reading is not a firm basis for asserting what the Zeitgeist of the time would be like.
Kahrs effort is analogous to describing the atmosphere of modem acute care medicine
through a survey of television hospital dramas. Kahr (1999, p. 765) managed to assert
that prehistoric ancient Greek and Roman sexuality was simultaneously a cauldron of
polymorphous perversity (citing Freuds term) and yet also completely intolerant to
sexual diversity.
In contrast, Rousselle (1999) took a more reasoned approach that likely should be
applied to all accounts that attempt to recreate social conditions from old and meagre
18
historical records. While reviewing two new histories on Greek sexuality, he noted that
relatively very few writings on sexuality survive from antiquity, and thus it is better to
think of these texts as telling us what the literature is saying rather than what the average
Greek was thinking and doing. It is dangerous, then, to take surviving documents from
prehistory and suggest that they describe a representative survey of mores and practices
of that time. Representativeness, and how important this is to the study of sexuality, is an
ongoing issue in sexuality research.
In this study, the couples are speaking for themselves, of themselves. The
description and analysis of their words are not offered as representative of other couples
in their situation, and their experience is not meant to stand in or define the experience of
other couples. Moreover, each couples social situation and culture may be different even
if they live in the same society. Nonetheless, as I provide a description and analysis of
their experience, their story may hold significance beyond the confines of their place,
time, and circumstance (Gadamer, 1989).
Who Is Answering? The Problems of Sample Bias in Sex Research
Research on people can be exclusively bibliographic. Many biographers write
about long-dead figures that are not available to be interviewed. However, research
involving actual contact with people, while productive, is beset with complexities. When
the topic being studied is a highly charged one such as sexuality, the difficulties are
compounded because the subject matter is often controversial: many people do not like to
talk about sex, much less make themselves available for research about sex. Who
volunteers? What do they tend to say and what do they tend to omit? Is there a pattern
19
that can be discerned there? How do different methodologies influence the bias already
existing? These are important questions to investigate when undertaking human research
using volunteers.
The problem of volunteer bias has been long recognized. Some of the first
attempts at a less-biased survey of sexual behavior, the Kinsey data (Kinsey, 1948, 1953),
were critiqued in terms of volunteer bias effects by the now-famous founder of
humanistic psychology, Abraham Maslow, over half a century ago (Maslow & Sakoda,
1952). This research study uses volunteers, and so it is worthwhile here to examine some
of the well-known effects of volunteer bias in research.
Volunteer Bias in Nonsexual Human Research
Volunteer bias has long been recognized in social sciences research. Rosenthal
and Rosnow (1969) typified volunteer subjects as better educated, more highly employed,
and less authoritarian in outlook than nonvolunteers. They also suggested that volunteers
might self-select for research studies that interest them, which is an entirely reasonable
supposition-and a bias that would be difficult to account for in a systematic way. They
also noted that more women than men tend to volunteer for general research studies;
however, in studies that volunteers understand to be about sexuality, this gender
difference in volunteering is reversed (Morokoff, 1986).
There is considerable evidence that volunteers for sexuality research differ from
other samples of the population. Evidence suggests that sexual study volunteers generally
vary from other population pools by their prior degree of sexual experience, some
personality correlates, some attitudes towards sexuality and other experiences, in
interpersonal style and other parameters (Dunne, Martin, Bailey, Heath, Bucholz et al.,
20
1997; Morokoff, 1986; Wiederman, 1999). This is understandable alone by the fact that
an inordinate proportion of sexuality research involves studies of college students: by
Wiedermans (1999) reckoning, almost half of all sexuality research conducted between
1971 and 1999 was undertaken using college students.
In a study designed to test volunteer bias to a proposed sexuality study,
Wiederman (1999) convinced 310 male and 399 college students to fill out an
anonymous sexuality questionnaire that asked about sexual practices. At the same time
the subjects were also solicited for their further participation in one of three other studies:
a similar questionnaire; a similar study that instead involved a face-to-face interview; or a
study where participants would view videos showing explicit sex. Wiederman found, for
both the groups that subsequently consented to the face-to-face interview and the explicit
video, compared to the other group,
Were more likely to have had sexual intercourse, have performed oral sex,
have greater tendencies toward self-monitoring and interpersonal
exploitation, indicate greater sexual esteem and sexual sensation seeking,
and report less traditional sexual attitudes. Interestingly, these differences
between volunteers and nonvolunteers were generally consistent across
gender: Male and female volunteers generally differed from nonvolunteers
in the same ways. (p. 59)
Dunne (1997) attempted to assess differences between responders and
nonresponders to a mail survey of sexual behaviors and attitudes (refreshingly, not
employing college students). Using a large (n=9112) Australian registry of adult twins,
the researcher sent out requests to participate in the sexuality study. Rates of responding
were matched to extensive psychological test results previously performed by these
registrants. Most had also previously undergone a structured psychiatric interview
through the twin registry. Although he found that responders differed little from
21
nonresponders in personality traits as rated in those prior psychiatric interviews, the
people who initially agreed to respond but didnt follow through did differ from
respondents by rating themselves as more extraverted and tough-minded, and less
socially conforming. Results of the clinical interviews showed that responders differed
from refusers: they tended to attend church less regularly, to start sexual activity earlier,
to drink and smoke more, and to voice less conservative political views than refusers.
Dunne noted that actual sexual attitudes were not measured-just the willingness to
participate in a survey about sexual attitudes. He cautiously concluded that mail sex
surveys might overestimate the degree of sexual liberality in the general population.
Morokoff (1986) undertook a review of volunteer bias as it related to studies of
female physiology experiments, arguably the most intrusive-literally-of sexology
experiments. She noted that, in general, most studies do not find a great deal of
personality differences between volunteers and nonvolunteers, but they do tend to find
significantly higher sexual experience and self-esteem, and more liberal sexual attitudes
in volunteers. She asserted that these effects are magnified somewhat as a function of the
effort required to participate: the more effort, the more liberal and sexually experienced
are the remaining volunteers. This effect is even further heightened when the study
involves the use of genital physiology recording equipment. Surprised by the high rate of
volunteering for her vaginal plethysmography experiment by female undergraduates, she
speculated that meaning and context of the event is always important: for the
undergraduate subject, this kind of experiment may represent a new, quasi-sexual
experience to try (Morokoff, 1986, p. 48).
22
The implications for this study is that some of the couples interviewed may
indeed share some of the situational characteristics and attitudes that diverge slightly
from those of a larger pool of people. Clearly, they were willing to talk about their sex
lives with a stranger without knowing the precise boundaries of that discussion or where
the discussion might lead, and that in itself might mean that they are a bit atypical. For
the purposes of my study, however, it is more important that they are capable of being
forthcoming than typical. They are qualified for inclusion by their circumstances and
experiences, not by their personalities or their views.
Is the Bar Put Higher for Sex Research?
The idea has been put forward that sex research is held to a higher evidentiary
standard compared to other human sciences and receives more critical scrutiny by virtue
of the nature and implications of sexuality itself. For instance, Brecher and Brecher
(1986) recalled the controversy over the Kinsey data around the time of the publication.
They describe that a 338-page rebuttal of Kinseys (1948) report mostly centered on the
authors contention that Kinseys results were not able to answer many probabilistic
questions, such as the proportion of the entire populace that engages in any particular
sexual practice. The authors noted that most questions in science are not settled by
random clinical trials, and they assert that the state of research in sexuality is really no
worse off than in other areas of human sciences in terms of rigor or professionalism.
Similarly, Bullough (V. Bullough, 1998) noted Kinseys work as a whole represented the
first large-scale surveys of sexual practices ever made available, and despite its
unprecedented contribution in advancing the field , it was almost reflexively discounted
23
by many in the scientific community, and vilified by many social commentators,
politicians and the clergy. It may not be possible to determine with precision if indeed
sexuality research labours under excessive expectations, but by these indications this may
be sometimes true.
One author drew a distinction that is important for the volunteer structure of the
present study. Bogaerts (1996) research suggested to him that the validity of results may
vary by what one chooses to measure. In a study similar to that of M orokoff s (1986),
Bogaert recruited from a pool of introductory psychology students obligated to volunteer
for at least 5 hours of testing as a condition of their program. Bogaert advertised two
studies: a questionnaire study ostensibly about sexuality, or another ostensibly about
general personality. Both groups were then given the same battery of self-report tests,
including measures of psychoticism, rule breaking, sensation seeking, hypermasculinity,
aggression, Machiavellianism, and social desirability. Also, information was solicited
from them about a range of sexual experiences and attitudes. Results indicated that the
sex-study volunteers rated themselves as more socially nonconforming, higher in
sensation seeking, more erotophilic, and had a greater experience and receptivity to a
variety of sexual experiences. They did not differ in measures of dominance, aggression,
Machiavellianism, social desirability or altruism. Boegart (1996) concluded:
How concerned should a sex researcher be by the present findings that
sexuality and personality variables discriminate between volunteers and
nonvolunteers? The answer to this question probably depends upon the
type of research questions investigated. If a researcher is using volunteer
samples to indicate the scope of certain high-risk social and sexual
behaviors...then caution is warranted. If, however, one is trying to
understand processes and mechanisms, then concerns about volunteer bias
may not be as relevant, (p. 137)
24
In my study, it is indeed the processes that the couples experienced that is being sought,
rather than a probabilistic calculation of the frequency of that experience for other
couples in similar circumstances.
How Does This Current Study Fit Into the Method of Inquiry?
This present study likewise involves the asking of sensitive questions about
sexuality, and additionally it is focused on the conjunction of disability and sexuality, an
area largely neglected in general societal discourse and where social presuppositions
about appropriateness have suppressed dialogue for the disabled regarding their sexual
selves (Fiduccia, 2000). This study does not labour under the burden of establishing the
representativeness of the data for other couples in similar situations, but I must be
mindful of the way in which these couples carry a history into their conversation with me
(Gadamer, 1989) and are similarly engaged in an ongoing dialogue with their own
assumptions of how sexuality fits into their life as seen through the lens of that society.
For this study, I am not centrally interested in the proportion of couples that break
up after SCI. This has been investigated thoroughly (DeVivo, Hawkins, Richards, & Go,
1995; DeVivo & Richards, 1996; El Ghatit & Hanson, 1975), and on balance it appears
that there is a higher rate of divorce after SCI. I am more interested in what those couples
who do stay together can tell us about how they did it, what it has been like for them, and
what they might suggest for other couples facing a similar crisis. Therefore, my
convenience sample is appropriate for the task at hand. If Bogaerts (1996) conclusions
are to be accepted, we should always be somewhat critical of asserting the frequency of
particular sexual activities from any volunteer sample, even large ones. However, the
25
volunteers in this study may be exemplars of emotional processes and coping strategies
that that other couples may go through, or might use.
26
CHAPTER 4:
SEXUAL INTERVIEWING
Sexuality is a health issue and should be integrated into clinical settings
that focus on the rehabilitation needs of people with disabilities. It is as
critical as any other activity of daily living and should be given an equal
priority by the health care team (Cole, 1991, p. 29).
The range of matters revealed by a health-care interview can be astonishingly
broad: patients may be suffering from everything from frank psychosis or life-threatening
illness to a mere lack of their preferred accommodation, and everything in between. The
same uncertainty can exist in clinical sexual health interviews. It is impossible to predict
the direction an interview may go, or what is important to the patient or couple (Tapp,
2000):
When the nurse does not assume that she or he knows what the family
needs or wants, the nurse can be more curious about the perspectives and
ideas of various family members and is more likely to invite their
questions and involvement, (p. 30)
It is impossible to be completely receptive to every possibility in a clinical
interview: we all bring our own prejudices and expectations (Gadamer, 1984), and as
much as one would like to reach some state of choiceless awareness (Krishnamurti,
2001, p. 12), there is no place from which to establish an objective view (LeVasseur,
2003; Nystrom & Dahlberg, 2001). A highly structured process brings precision but
sacrifices the spontaneity of both interviewer and interviewee; an unstructured process
may frustrate attempts to shed light on important areas.
My study employs a compromise method: a semi-structured interview format with
some preset general questions that were asked of everyone, plus a list of possible
questions (see Appendix B) that were used if and when the tone and tenor of the
27
conversation appeared to invite them (Briggs, 1986). This allows both the interviewer and
interviewees to conduct the conversation, and be conducted, to allow flow but increase
the likelihood that study questions are addressed. I cannot interview from an objective
stance, but can tend the conversational field to allow a story with substance to grow.
Interview Methods in Acute Care Settings
Most clinical mental health interviews, especially in the acute care setting, are
designed to assess patient safety, and elicit symptoms that require treatment. In these
interviews, issues of suicidality, homocidality, overall judgement of patient risk to self
and others, mood symptoms and mental status are the primary topics, and there is a duty
of the nurse to adequately assess these elements. In a rehabilitation setting, safety and
symptoms are important, but diagnosis and symptoms may be fairly stable: it is the lived
experiences, including the problems encountered and their effect on quality of life, that
tend to be the more common context (Hultling et al., 2000; Murphy, Molnar, &
Lankasky, 2000).
Structured clinical interviews are sometimes viewed as the gold standard for
mental health data collection, especially in psychotropic drug studies. Structured clinical
interviews are also efficient: they fulfil medicolegal requirements, and can be
administered by a broad range of health-care personnel, which may increase flexibility
and reduce research costs. However, these data collection methods do not leave space for
the unexpected symptom or the paradoxical belief. A checklist can never replace the
opportunity for people to tell their own story in its own structure and with their coherent
sense of meaning (Britten, 1995; Kvale, 1996).
28
Clinical Sexual Interviewing
Sexual interviewing, whether clinically or in a research context, requires
particular delicacy and subtlety on the part of the interviewer. Sexual problems often
manifest and mask themselves in the major symptoms that patients bring to treatment:
depression, anxiety, failure to achieve, low self-esteem, and the inability to engage in
intimate relationships (Risen, 2003, p. 4). Risen put forward the notion of sexual health
interviewing as listening for the sexual story (Risen, 2003, p. 3). She suggested that
good sex research interviewing, to do justice to the most important aspect for the patientthe emotional quality-should not employ an overly structured approach. The
interviewees story will meander somewhat because it is not constituted of calendar dates
but of impressions and meanings woven together by each person in their own unique way
(Risen, 2003).
Why is Sexual Interviewing So Difficult?
Aside from the fact that we all apprehend our own sexual story in a unique way,
the topic of sexuality itself can often induce anxiety in all involved, including the nurse
conducting the interview. Peck (2001), observed that while the taking of a sexual health
history should be a customary event in a gynaecological assessment, it is rarely
conducted due to caregiver anxiety. Maurice (2003) noted that mental health providers,
for instance, miss many opportunities to address sexual concerns of patients due to lack
of attention to this area of assessment; he also noted that anxiety among doctors and
nurses is a leading cause of inadequate assessment (Maurice, 2000). There is also a long
way to go with respect to nurse education. As Duldt and Pokorny (1999) noted:
29
Unfortunately, when it comes to human sexuality, healthcare as it is today
tends to disregard the holistic tripod of body, mind, and spirit. Healthcare
professionals do a good job of supporting relationships and holism in
parent-child care (maternity nurses, it seems, have always had a holistic
perspective), but this perspective needs to be applied in all areas of
healthcare, (p. 29)
Anxiety on the part of interviewers could arise for many reasons. One cause can
be that these topics are too private between strangers, even for therapeutic purposes. Both
nurses and physicians have told me they would never even consider asking sexual
questions of their patients for this reason. Another source of anxiety is that sexual
questions directed at the patient may bring up difficult issues for the caregiver. Issues
such as sexual dysfunction, sexual orientation, or marital conflict may resonate strongly
with the caregiver and create a hidden no-go zone that reflects the nurses sensitivities
more than the patients. Finally, a significant feature in nurses anxiety about sexual
interviewing is lack of knowledge. In clinical settings, nurses tell me that they know that
sexual questions are important, but feel they lack the knowledge to question intelligently
or how to follow up once a response is elicited.
Maurice (2000) studied impediments to sexual-related questions for physicians.
He noted the following factors:
1. Unclear what to do with the answers (uncertainty about the next
question; lack of familiarity with treatment approaches)
2. Fear of offending patients
3. Lack of obvious justification
4. Generational obstacles
5. Fear of sexual misconduct charge
6. Sometimes perceived irrelevant
7. Lack of familiarity with some sexual practices (p. 15)
30
Some of these clearly could interfere with incorporating sexual questions into a routine
nursing assessment. Not every nursing assessment should include sexual questioning, but
there is enormous room for improvement (Irwin, 2002; Selby, 1989).
Couples Counselling and Sexual Interviewing
The complexity inherent in sexual interviewing is magnified when couples are
interviewed together. I have noticed that couples may buffer each others emotion, or
may amplify it in a shifting and unpredictable manner. Like Tsiporah for Moses, one
partner (commonly the female partner in a heterosexual relationship), may do almost all
the speaking for the couple, a process that the silent partner may not interrupt - even
when they clearly disagree about what is being said! Risen (2003) identified three other
features of couples interviews in sexuality:
1. The absence of communication about sexuality in most couples;
2. The distortion of facts that may occur when one or both partners fear
correcting the other when telling their sexual story; and
3. The presence of private sexual thoughts, experiences, and secrets, (p. 9)
For these reasons, nurses cannot wait for patients to spontaneously talk about
sexual matters. It is up to the nurse to raise the issue with their patients, since they are
unlikely to do so on their own (Breen & Rines, 1996; McBride & Rines, 2000). The best
time for this is in the assessment phase (Baladerian, 1991; Maurice, 2000); leaving it until
the end may convey the impression that it is a taboo subject (Risen, 2003; Stevenson,
Szasz, Maurice, & Miles, 1983). This places sexual health for the patient as an important
but unexceptional element of a holistic health assessment.
Conjoint or Separate Clinical Sexual lnterviews-Or Both?
31
Studies employing dyadic interviews are relatively uncommon in research, even
when studying dyads (Racher, Kaufert, & Havens, 2000). Interviewing couples may be
qualitatively different from interviewing members of couples separately. Although this
study does not primarily seek to find the true story by examining discrepancies
between individual reports, it is important for my purposes to be aware of the effects of
my method. Since my study employs both individual and dyadic interviews, it is
important to examine these differences.
Interviewing couples can be expected to provide somewhat convergent reports:
that is, couples tend to respond similarly to each other when interviewed together (Allan,
1980; Racher et al., 2000). These convergences come from at least four phenomena. First,
the effect of assortative mating: that is, the tendency of members of a couple to be similar
in a number of demographic variables, including education, socioeconomic features and
age (Epstein & Guttman, 1984) may increase the likelihood of similar answers. Three
other factors are described by Kenny (1996). He described partner effects , that the
behavior of one partner affects the quality of life of the other; mutual influence (the
bidirectional variety of partner effects); and common fate (p. 280), that couples are
exposed to the same external events because they are together. Therefore, some answers
given in couples interviews, although voiced by only one partner, may represent a co
created and shared response (Allan, 1980).
Little research has been done on what might be the optimal strategy for clinical
health interviewing with regards to the individual/dyad issue, and the subject appears to
be unexplored in terms of research interviewing in sexual health. Certainly, it is largely
impractical in many general health care settings to arrange both conjoint and separate
32
interviews. In specialty clinical settings devoted to sexual health assessment and
treatment, the need for a high degree of detail is critical, and the luxury of time often
allows a mixed conjoint/individual model to be employed. Another feature for specialty
nurses in sexual health is also that couples are usually referred to these services after
treatment failure or dissatisfaction with previous interventions, and it is likely that a
higher degree of detail and subtlety must be addressed to break the stalemate. A mixed
model holds the possibility of opening up new awareness of the relations between
couples.
As mentioned before, although mixed interview models are routinely utilized in
clinical sexual health settings, this fact rarely makes it into print. A mixed model is used
at Vancouver Hospitals BC Centre for Sexual Medicine, for instance, and has been for
several decades, but I could find no evidence of this in their numerous publications.
Clinicians at GF Strongs Sexual Health Service in Vancouver commonly do likewise,
but this is not reflected in their articles either. Perhaps it is understood. Risen (2003, p. 9)
favoured combined conjoint/individual interviews because in her opinion, inviting
partners to describe their sexual life together may produce an embarrassment and
inhibition that might not be present if either one was talking to you alone. She went on
to note (Risen, 2003, p. 10) that presenting this format [individual/conjoint interviews]
at the first session as routine reassures each partner that this is not being suggested
because the therapist has gotten the indication that there are big secrets being withheld.
An exclusively or predominantly individual approach might increase mistrust and
suspicion in an already-mistrustful couple, and also might give the impression that sexual
problems are exclusively individual problems occurring in one or the other partner. From
33
a clinical standpoint, a conjoint interview followed by the individual interviews and
finishing with another short conjoint interview is extremely useful. This is not time
efficient, but months or years of subtle sexual and relational problems will not be
uncovered in a few hurried minutes of a couple interview.
There are many more advantages to a mixed interview model than just reduction
of embarrassment. Partners may have perceptions diametrically opposed to the perception
of their partner. What they hear from their partner (often for the first time) in the opening
conjoint portion of the first appointment is sometimes so surprising to them that it is not
embarrassment that prevents them from speaking. Instead, they are sometimes simply
stunned into silence for a few minutes by the new knowledge, and the change in
interview context is a much-needed opportunity to collect their thoughts. The opposing
perceptions can be about the problem itself, the causes of the problem, the solution, the
severity, the length of time it has been a problem, the degree of importance to the overall
relationship-and disagreement on any of these issues can be a serious sticking point in a
relationship. Some items may be critically important but so unlikely to be revealed
quickly in couples therapy (an ongoing marital affair, for instance, or a firm decision to
divorce), that an opportunity to voice these individually can save a lot of clinical time.
Qualitative Interviewing and Sexual Issues Research
Some research has been done into the particular challenges of interviewing
vulnerable groups about sensitive topics such as sexuality. Hurd Clarke (2003), in her
study of older womens sense of their body, used a semi-structured interview method and
symbolic interaction interpretive framework. Many of the issues of importance to the
women were sexual in nature. Ultimately, the researcher identified a number of elements
34
that seemed to enhance rapport and comfort of the respondent. These included the use of
home interviews, the use of multiple interviews of the same respondent (respondent
processing of earlier interview material seemed to enhance reporting on subsequent
interviews), self-disclosure on the part of the researcher (to stress the reciprocal nature of
the interaction and the realness [p. 727]), information-sharing and provision of
assistance to the respondents by the researcher (Hurd Clarke helped respondents with
such tasks as securing sex education materials and buying groceries).
Sexual Interviewing and The Present Study
It appears that studies of couples have, paradoxically, often viewed the members
as two solitudes (MacLennan, 1945, title). However, as Allan (1980) put it, it is the
interaction of the couple as they create their accounts that provides the researcher with
material that he would not otherwise obtain. (p. 206) Taken as a whole, much research
appears devoted to isolating and classifying independent effects; quantitative studies may
even employ complex statistical formulae to strain out these effects. In this study, the
convergences and divergences of couples are part of the phenomena of interest, it is not
experimental noise. At the same time, an opportunity to also interview couples as
individuals can reasonably be expected to offer fresh information. The interplay between
what couples offer separately and together appears to be a unique feature of the present
study that may identify unique opportunities in qualitative research.
35
CHAPTER 5:
SYSTEMS THEORY AND ITS APPLICATION TO SEX AND COUPLE PROBLEMS
The current study involves interviewing members of a couple simultaneously as
well as separately. How should this be approached conceptually? Should we treat them as
separate individuals, with individual functioning-and thus a sum of their parts? Instead,
systems theory asserts that couples constitute systems possessing a complexity of an
order beyond the sum of their parts (Stavros, 1991), and that this complexity explains the
sometimes-paradoxical nature of their responses to each other and events in their
environment.
Having witnessed the value of the systemic approach in the University of Calgary
Family Nursing Unit and at the BCCSM, I wanted to incorporate a systemic approach to
data gathering and interpretation in this study by paying special attention to the
interactional nature of the couples, and to incorporate some element of systemic-style
questioning into data gathering (see Appendix B). The sophisticated theoretical stance of
systems theory, as well as the continued use of systemic approaches as a couples and sex
therapy method (Crowe & Ridley, 2000; Gehring, 2003; Sanders & Tomm, 1989),
qualifies it for inclusion in this study, and for a closer review.
The Beginnings of Clinical Sexology
The dominant approach to sexual problems in Western society for the past few
centuries has been ecclesiastical/moral: Individuals, and less often couples, went to their
religious leaders for advice and adjudication (V. L. Bullough, 1990). The early therapists,
36
such as Krafft-Ebing (1965), Magnus Hirschfield (V. L. Bullough, 2003) and Freud, who
first published in the late 1800s, even with their preoccupation with phrenology and other
physiognomic typologies, represented a significant advancement in that they were willing
to conceptualize patients problems as due to something besides sin (V. L. Bullough,
1990). As well, these late 19th century sex researchers were more culturally relativistic
than their predecessors (Nye, 1991). Psychoanalytic approaches to sexual problems then
dominated for decades (Rathus et al., 2004), no doubt inspired by the ever-looming
presence of Freudian psychotherapy (and its outgrowths of object relations therapy), and
the increasing involvement of psychiatrists in the area of criminality, a dominance which
no doubt led to the curious inclusion of a range of sexual problems in psychiatric
diagnostic manuals (American Psychiatric Association, 1962). With that presumable
diagnostic closure, research languished.
At the same time, naturalistic observers, often zoologists, such as Alfred Kinsey
(Kinsey, 1948, 1953) and Desmond Morris (D. Morris, 1969, 1971) were researching the
broad range of human sexual behavior, but it is unclear as to how much immediate
impact their research had on clinical approaches. Their results initially shocked the
general populace and met with some incredulity within the scientific community (J. H.
Jones, 1997). Their impact on clinical approaches may have not been so direct, but
perhaps they had an influence by exposing the heterogeneity of human sexual behavior,
thus causing the statistical definition of normal to expand the cultural definition of
normal in terms of sexual behaviors, especially the light they cast on the commonness of
same-sex behavior and infidelity.
37
The Systemic Approach in Action: Clinical Application
Systems approaches have found their way into sex therapy. Gary Sanders and
Karl Tomm (1989) wrote one of the earliest and most insightful descriptions of the
application of systemic concepts to sex therapy. In a significant shift away from notions
of individual pathology, Sanders & Tomm (1989, p. 347) noted, what is more important
than the specific nature of the symptoms is the experience of and concern about these
symptoms. It is this lived experience that systemic therapies address. They suggest, in
congruence with systemic thinking, that different domains of couples experiencebiological, psychological, informational-are related nonhierarchically and
multidirectionally in the overall scheme of the couple problem. They note that system
interactions within the dyad can buffer differences in sexual style, magnify them, or even
oscillate between congruence and difference. They also apply the notion of recursive
systems to show how peoples observation of their own behavior is of immense
consequence to their perception of their self and circumstances. It is this lived experience
that this current study attempts to reveal.
Therapist David Snarch (1995) incorporated many systemic concepts into his
multifactorial approach to sex therapy. Interestingly, one can sense a certain tension in
his therapeutic approach. In his later book, Passionate Marriage, (Snarch, 1998) he was
intensely preoccupied with the role of individual psychic differentiation in couples, and
considered the degree of relative differentiation of individuals in a dyad to be almost the
rate-determining factor in marital satisfaction. Later, Snarch (2002) in Resurrecting Sex,
appeared to have backed away from this somewhat extreme (and for many couples, rather
bleak) prognosis towards a more interactional view of relationships.
38
Clinical social worker Darlynne Gehring (2003) took an eclectic approach,
incorporating psychoeducation and Emotionally Focused Therapy (Johnson, 1996) into
her clinical model. She described her work with the rigid, painful circular fights and
what she described as the triangle of emotions (p. 30) of hidden feelings, defensive
solutions, and fear of abandonment that fuels many couples conflict-laden interactions in
sex therapy. Her clinical work operates within an understanding of the Basson Sex
Response Cycle (Basson, 2001; Basson, Leiblum, Brotto, Derogatis, Fourcroy et al.,
2003)-which itself, if not formally a systemic view of sexual functioning, is highly
cognizant of the role of context in creating couple problems and the essentially
interactive nature of sexual response.
The question of whether sexual problems should be treated as individual
medical/psychological problems or interactional dyadic problems represents something of
a false dichotomy. It is clear that despite advances in pharmacological science, exclusive
reliance on medications in an attempt to address couples relationship/sexual concerns
may often prove inadequate (Holzapfel, 2000). At the same time, it would seem unethical
to deny pharmacological treatment if it is potentially beneficial and safe. Systemic
approaches are not inimical to medical approaches, but the essential strength of systemic
therapy is its pursuit and advocacy for the satisfaction of the couple regardless of the
functioning level of the individual partner. Robinson (1995) noted that individuals can be
perceived as systems in themselves, families can be viewed as unitary entities for some
purposes, and to ignore either perspective represents missed opportunities.
39
The Relevance o f Systems Theory to This Research Study
Systems theory has a place within this study from a number of perspectives. First,
as much as I am interested in the couples as individuals, I am even more interested in
their interactions as a couple, and their perceptions of changes in those interactions as a
consequence of SCI. Thus, an attempt has been made in this study to interpret the data, to
some extent, through a systemic lens. Second, I have incorporated some circular
questions (Cecchin, 1987) into the couple interviews, in order to help reveal the
complexities of their beliefs about themselves as members of a dyad.
40
CHAPTER 6:
RESEARCH METHOD
A Qualitative Research Approach
Qualitative methods have proven of value in exploring the overall psychosocial
impact of disability or chronic illness (Fredriksson & Lindstrom, 2002; Ironside,
Scheckel, Wessels, Bailey, Powers et al., 2003; Miczo, 2003) and more specifically on
sexual health issues (Kralik, Koch, & Eastwood, 2003; M. Tepper, Whipple, &
Komisaruk, 2001; Tomlinson & Wright, 2004). A dizzying array of qualitative
approaches have arisen to address different subject areas, including phenomenology (M.
Tepper et al., 2001), hermeneutic phenomenology (Annells, 1996; Walsh, 1999),
analytic induction (Howland & Rintala, 2001, p. 46), narrative pedagogy (Ironside et
al., 2003), participatory action (Kralik et al., 2003), and simply exploratory qualitative
methodology (Tomlinson & Wright, 2004, p. 1).
While a particular strength of some qualitative approaches is an inherent
flexibility to examine complex situations that are rich in context, qualitative approaches
themselves vary significantly in this flexibility. Some qualitative studies, in contrast, seek
to quantify the qualitative data through counting the appearance of particular categories
of interviewee response (Thomas, Harden, Oakley, Oliver, Sutcliffe et al., 2004; Wolfe,
1997). The aim of the present study, however, was not to emphasize the specific
frequency of a particular response, but to examine primarily the unique experience of
particular couples.
41
Philosophical Hermeneutics
Hermeneutics, from the Greek hermeneuticos, to interpret (Allen, 1990) is an
orientation to analysis that emphasizes textual interpretation and the development of new
meanings (Byrne, 2001b; Gadamer, 1989). In hermeneutics, no single strict and objective
interpretation of text can exist (Gadamer, 1989), and the intention of the author of the text
is only one consideration in analysis (Ricoeur, 1976). Hermeneutic researchers draw on
their own experiences and preunderstandings (Nystrom & Dahlberg, 2001) in an ongoing
dialectic that yields various interpretations that resonate both with other elements of the
text, and the perception of the reader (Geanellos, 2000).
Philosophical hermeneutics is a particular approach to textual interpretation
deriving from Hans-Georg Gadamer (1984, 1985, 1989). Philosophical hermeneutics has
found broad application in 20th century intellectual discourse, including such varied
arenas as Biblical and other literary criticism (Frye, 1981) and modern advertising and
marketing (Gould, 1995).
Philosophical hermeneutics offers an approach to textual analysis (e.g.,
examination of interview transcripts) that is well recognized within the human social
sciences literature (Arnason, 2000; Fleming et al., 2003). Gadamer (1989) emphasized
the active and inextricably contextual nature of interpretation produced by the fusion of
horizons (Gadamer, 1989, p. 307): the shifting horizon of the preunderstandings of the
observer and the evolving context of the present moment in which interpretation takes
place. Understanding does not arise from the distanciation caused by method, but by the
close connection to the interpreter with the subject-matter (Grondin, 1995), and the
42
acknowledgement of that dialectic. In this type of interpretation, what is unsaid is
important, and silence can have great meaning (Houger Limacher & Wright, 2003).
Philosophical hermeneutics is not itself a method (Gadamer, 1989) but does
suggest elements of method, as well as a way to develop a deep understanding of a
phenomenon (Fleming et al., 2003, p. 118). Because of the freedom it offers to give
voice to complex interactional phenomena and to honour the place of context and
historicity in a subtle field such as sexuality, philosophical hermeneutics would thus seem
to be an ideal orientation with which to explore in depth the unique changes in couples
experiencing the sexual and intimacy effects of spinal cord injury.
Key Concepts fo r Philosophical Hermeneutics
Philosophical Hermeneutics and the Concept o f Tradition
Philosophical hermeneutics emphasises the degree to which knowledge is derived
rather than revealed: it is dialogical and dialectical (Spence, 2001, p. 625) and
inevitably reflects the process of socialization of the interpreter. Ceci, Houger Limacher
and McLeod (2002) identified that conventional science of the received view deals
primarily in what it sees as facts and logic, but noted:
The smooth surface of science was disrupted, however, by the articulation
of views that called into question the very possibility of the kind of
objective knowledge to which science aspired. Philosophers and historians
of science changed our understanding by drawing attention to and
challenging the underlying assumptions on which the practice of science
rested. Few scientists would now claim to be detached, neutral observers.
(p. 715)
Thus it is largely incontrovertible that one comes to inquiry via some tradition
(Gadamer, 1989). What is open to discussion and debate, it would appear, is how that
tradition has informed any particular inquiry. In a Gadamerian sense-and in a sense taken
43
up in a similar way by Foucault (1978) in the study of sexuality-that tradition affects not
merely analysis, but the choice of the questions that form the very scope of inquiry, and
the basic definition of terms (Few, 1997; Morrow, 1995). As Latimer (2003) noted:
The major funders of health research usually want studies that they
[original italics] can account for. The kind of research that is easily
accounted for promises practical results with clear clinical relevance. But,
what counts as clinical is predefined in ways that favour the heroic, the
functional, the clear and distinct, (p. 2)
These are among the subtlest effects of tradition: the creation of a dialectic whereby what
is considered important, and what is problematized, is generated (Kleinplatz, 2001).
In the present study, guided by philosophical hermeneutics, the couples, within
wide parameters, carried the conversations largely where they chose, although specific
questions were asked of the majority of couples (see Appendix B). The couples were
encouraged to describe what was most important to them. Thus, the couples themselves
help to form the scope of inquiry.
Preunderstandings and the Hermeneutic Researcher
Rather than either bracketing prejudices (Husserl, 1917) or denying their
influence (which Gadamer, 1984, considers an essential error of many forms of inquiry),
qualitative researchers, including philosophical hermeneutical researchers, often describe
their preunderstandings, including their assumptions and philosophical worldview that
inform their inquiry (Geanellos, 2000; Nystrom & Dahlberg, 2001).
At its best, preunderstandings can contextualize the researchers inquiry on behalf
of readers by offering a window into the researchers sense of their own intentions, and
the researchers felt challenges in perceiving something new. However, an elucidation of
preunderstandings can also become an excessively self-referential laundry list of
44
prejudices offered as articles of faith (with no effort to justify them). There is also the risk
that a list of preunderstandings can degenerate into an extended mea culpa for the cultural
situatedness of the author: that is, the historical determinism of identity politics. Neither
of these approaches advances broad understanding. Moreover, complete clarity is
impossible: if one...draw[s] the conclusion that one can become transparent to oneself,
that one can become sovereign in one's thinking and action, then one is mistaken. No one
knows himself or herself. (Gadamer, 2001, p. 42) Research is always in some way
inextricably about the researcher-but it should be mostly about what is being researched.
Reflexivity and the Hermeneutic Circle
The concept of a hermeneutic circle (Gadamer, 1989) encompasses a number of
dialectical processes within philosophical hermeneutics. A central element for Gadamer
(1989) was the temporal process whereby a researcher seeks to know the text in a way
that is deep and not utterly self-situated:
For the interpreter to let himself be guided by the things themselves is
obviously not a matter of a single, conscientious decision, but is the
first, last, and constant task .... He projects a meaning for the text as a
whole as soon as some initial meaning emerges in the text.... Working out
this fore-projection, which is constantly revised in terms of what emerges
as he penetrates into the meaning, is understanding what is there, (p. 267)
Geanellos (2000) emphasizes the function of the hermeneutic circle in producing
successively greater depths of understanding:
Interpretation moves forward from naive understanding, where the
interpreter has a superficial grasp of the whole of the text, to deeper
understanding, where the interpreter understands the parts of the text in
relation to the whole and the whole of the text in relation to the parts, (p.
112 )
45
Geanellos (2000) further described other hermeneutic circles, including an
ontological sense of the circle formed by the conjunction of interpretation and
interpreter (p. 113). Walsh (1996) took a similar position, noting the contextual nature of
all effective interpretation, and how the hermeneutic viewpoint experiences tension with
positivist empirical approaches to research:
Because interpretation is an active process involving the fusion of
horizons, the subject-object distinction commonly found in logicopositivist research becomes meaningless. In fact, the imposition of an
objective standpoint (as in the natural sciences) in which
preunderstandings are eliminated, moves one out of the hermeneutic circle
and can lead to spurious interpretations, (p. 235)
Reflexivity is a concept related to the hermeneutic circle, and intrinsic to
hermeneutic inquiry. (While reflexivity appears to be the customary term in qualitative
research circles, Gadamer, 1989, p. 236 refers to a reflective philosophy .) At its
simplest, reflexivity is a positive answer to the question of whether a researcher
influences the results of study (Carolan, 2003). For Todres and W heeler (2001),
reflexivity was partly about the examination of preunderstandings through self-reflection.
Hand (2003) suggested that the material of reflection and the process of reflexivity itself
all provides material for interpretation in itself. Findley (2002) offered one of the most
succinct summations of the many-sided usage of the term reflexivity:
It can be understood as a confessional account of methodology or as
examining ones own personal, possibly unconscious, reactions. It can also
mean exploring the dynamics of the researcher-researched relationship and
how the research is co-constituted. In practice, it has been applied at
different levels. At a minimum level, it means acknowledging the
existence of researcher bias and explicitly locating the researcher within
the research process. At a more active level, it involves a more wholesale
embracing of subjectivity, for example, by exploiting researchers/co
researchers reflective insights and by engaging in explicit, self-aware
meta-analysis throughout the research process, (p. 536)
46
If we are to distil these impressions, reflexivity describes an ongoing process of self

reflection and return to the data, an acknowledgement of the co-creational nature of
human research, and an attempt to clarify for the reader the perspective taken to develop
the research conditions and interpret the data.
Through self-reflection and successive readings of the transcripts, I worked to
reveal the world the couples found themselves in after the injury, and how they re
established some form of equilibrium (or not!) in their intimate lives. Readers of the
results are invited to make their own assessment of the validity and relevance of what is
presented, and to use this information to guide their own nursing practice.
Research Process
Recruitment o f Interviewees
The purpose of interviewee selection in this qualitative study was not to
methodologically create the conditions conducive to generalizability as in
epidemiological studies (Hills, 2000) through randomization, but instead to find
exemplars who might give rich descriptions of their experience (Moules, Simonson,
Prins, Angus, & Bell, 2004). A convenience sample of nonhospitalized couples was
obtained through local members of the Canadian Paraplegic Association (CPA); this
method had been previously successful in recruiting subjects who are willing to discuss
intimate relationship issues (Milligan & Neufeldt, 1998). A recruitment poster was
provided to the Alberta section of the CPA (see Appendix A), and was physically posted
on the premises and electronically. Members of the CPA, including peer and professional
rehabilitation counsellors, made the recruitment poster available to couples that they felt
47
would be willing to be interviewed and who would be comfortable discussing sexual and
relationship matters. These couples initiated contact with me or asked to be called.
Couples were briefly pre-screened via telephone to confirm that they met study criteria.
An unexpected difficulty arose in finding three couples to participate in this study.
After almost 6 months of effort, only two new couples had been identified; luckily a
couple interviewed a few months previously for a similar (unpublished) educational
project agreed to the use of that material, and also kindly consented to a re-interview.
The difficulty appeared to be not in convincing appropriate couples to participate,
but in locating those couples in the first place. Some couples came to my attention, but
they were in the acute phase of the m ans SCI. Some people identified willing couples,
but those couples had gotten together after the injury.
My criteria did not necessitate use of a clinical population; therefore, they were
not solicited through their contact with a health-care agency, which is the method that so
much health-care research is dependent upon. Brannen (1982) noted that, in his
experience, recruitment for couples studies was easiest through a hospital environment,
and that the use of outside agencies greatly increases the difficulty in finding appropriate
couples.
Another difficulty with recruitment was that I was soliciting couples for this
study, and a large number of couples divorce (see Chapter 2). One couple in this study
noted that all the married friends that they had had through their acute rehabilitation had
split apart-they were apologetic that they could not refer any couples to me as a result.
48
Finally, this study required couples with a certain combination of circumstances.
It appears that the need for multiple factors to be present and several to be absent-even
relatively mundane factors-dramatically shrinks the pool of potential interviewees.
Sample Size and Composition
Three couples were interviewed. The couples were English-speaking heterosexual
couples in which the male had sustained a complete spinal cord injury at least two years
previously; this restriction was initiated because research indicates that occupational and
physical rehabilitation problems commonly override sexual rehabilitation considerations
for some time after injury (Fisher, Byfield, Brown, Fiedler, & Laud, 2001). All of the
couples had been married or cohabiting prior to the SCI.
The Interview Volunteers
All the couples are exemplars of marital cohesion in the face of severe health
challenge, and their reactions are unique. I can see no grounds on which to invalidate
these couples experiences as wildly atypical. Certainly, they describe life trajectories
that are not highly unusual. There is no reason to believe that these couples are
particularly eager or particularly avoidant in talking about sexual matters, and their
responses in no way seemed at any time facile or rehearsed. These couples all had fairly
conventional jobs and did not act as advocates for disability, or sexuality, or otherwise;
there is no reason to believe that their reactions and coping strategies had been informed
by any awareness of a broader-than-average range of choices. In my clinical experience,
the stories offered by these couples do not fall outside the range of what is commonly
found in routine clinical counselling with SCI couples. We can learn something from
these couples, and so can other couples.
49
If anything about these couples appears to be atypical, one thing stands out. Three
of the interviewees have been, at some time at their lives, national-level athletes. These
men and women were known for excelling in physical feats, and in some cases they had
made a living from their athleticism. They are used to physical challenges and pain.
Perhaps they are also used to performing in public-and an interview with a stranger,
though private on one hand, is a public act in some respects.
Interviewer
I conducted all the interviews personally. I had previously gained interview
experience conducting clinical sexual health interviews for the BCCSM, GFS, and
Canadian M ens Health Centres. I have also conducted research interviews as a research
assistant in clinical drug trials.
Interview Method
A semi-structured interview method utilizing a significant proportion of openended questions was employed (see Appendix B). The unique nature of each research
interview, including degree of rapport, ethnicity, educational level, and previous topics
discussed in the interview dictated an individualized range of questions in terms of
selected topics, wording of questions and timing of topic introduction (Briggs, 1986). A
rigid, stepwise approach to questioning might have inhibited the spontaneous flow of
data, and in itself would represent a misguided attempt to impose a quantitative
conceptualization in order to mimic an analogue of quantitative rigor (Koch &
Harrington, 1998). Instead, interviews were conducted more conversationally, rather than
clinically or forensically. A number of interview questions (see Appendix B) were
employed as opportunities arose. During the course of data collection, questions were
50
modified as productive themes emerged from interviews (Polit & Beck, 2004). For
example, issues about physical mobility and a sense of masculinity arose spontaneously
from early interviews and questions were then incorporated into later interviews.
A common interview method employed in couples counselling for sexual
concerns was employed (R. Basson, personal communication, September 23, 2004; R.
Stevenson, personal communication, September 23, 2004): individual couples were
interviewed together, then separately, then together again. The estimated total time for
the interviews was approximately 90 minutes. Research couples were given an email
address with which they were free to contact the researchers after the interview should
they wish to share any further impressions. Interviews were tape-recorded and transcribed
by the interviewer within 2 days.
To maximize the interviewees sense of comfort, interviews were conducted in
the home, except for one interview that was conducted in a private room in a community
centre. These interviews were scheduled at the interviewees convenience.
Data Analysis
Data for analysis consisted of the interview tape recordings, transcripts, interview
notes, and recollections of the interviewer. Data were analyzed in an interpretive manner
consistent with philosophical hermeneutics (Fleming et al., 2003; Gadamer, 1984, 1989),
recognizing and working with the reflexivity, d efin ed as thoughtful, conscious selfawareness (Fleming et al., 2003, p. 36), between the data for analysis and the
assumptions and perspective of the analyst (Hunter, Lusardi, Zucker, Jacelon, &
Chandler, 2002; Pyett, 2003). Also consistent with a philosophical hermeneutic approach,
the transcripts were subjected to repeated readings for global and specific utterances,
51
internal relationship of themes within transcripts, and commonalities between transcripts.
Often, an utterance by one interviewee would remind me of some utterance by another,
either because of its similarity or subtle difference, and I commonly reread the transcripts
in order to track some specific idea evoked by being reminded in this way. In this
nonlinear process of analysis, new areas of research opened up and produced the need to
examine new areas of the literature to be reviewed. The transcripts were discussed on an
ongoing basis with my Thesis Advisory Committee members, although not to the extent
employed in team qualitative research (Barry, Britten, Barber, Bradley, & Stevenson,
1999).
Ethical Considerations
Ethical Approval
Research was conducted in a manner consistent with the University of Calgary
policy statement on ethical conduct for research involving humans (University of
Calgary, 2000). Ethical approval from the Conjoint Health Research Ethics Board
(CHREB) was secured before interviewees were recruited.
Because of the shifting nature of information gathering in qualitative research
studies: smaller sample size, higher degree of detail of individual data, highly personal
nature of information gathered, and sometimes decreased anonymity in the interviewee
selection process (Byrne, 2001a), particular care and honesty must be taken in the process
of securing informed consent for interviewee participation. Written informed consent
consistent with CHREB guidelines (University of Calgary, 2000) (See Appendix C) was
secured from each participant before the initial interview. Each aspect of the consent was
52
reviewed with each interviewee in person, and research did not proceed unless both
partners consented to the interview.
Debriefing and Mitigation o f Potential Harm
A written list of local counselling sources, compiled by Calgary Mobile
Emergency Services for debriefing was given to each interviewee (see Appendix D). An
on-call cellular telephone number for the principal investigator, who has significant
experience in debriefing couples, was also provided for the same purposes of onward
referral.
Membership lists were not solicited from the CPA. Couples had the choice of
initiating contact with the researcher. The recruitment poster (see Appendix A) clearly
confirmed no specific endorsement of the study by the CPA. The CPA was not notified as
to whether a referred couple actually participated.
Post-Interview Check With Interviewees
After all the interviews were conducted, I returned to the couples with excerpts of
their transcripts and interpretive writing related to those excerpts. The interviewees
reviewed the writing so they could determine for themselves if they were comfortable
with the level of description contained therein. Subsequent to this, they signed a letter of
understanding to document this process (see Appendix E).
Data Collection and Storage
Data were handled consistent with The Health Information Act (Office of the
Information and Privacy Commissioner (Alberta), 1999). Pseudonyms were used in the
transcripts, and only the principal investigator and interviewer had access to that code.
Audiotapes were kept under lock and key by the principal investigator. Audiotapes will
53
be erased at the conclusion of the study. Transcripts were kept confidential by the
primary researcher and myself. Access to audiotapes and transcripts was restricted to
myself and my Thesis Advisory Committee. Data were also available to the Conjoint
Health Research Ethics Board (CHREB) as per their policy (University of Calgary,
2000).
CHAPTER 7:
INTERPRETIVE DESCRIPTIONS
I have chosen to present a more descriptive section and an interpretive analysis
section as separate chapters. My hope in doing this is to first provide a sense of each
individual couple as a story (Risen, 2003), and to give a sense of the important individual
circumstances that these couples faced. I have tried to provide some context for the
interpretive analysis that follows (see Chapter 8 ), in Gadamers (1989, p. 190) sense, of
psychological understanding [original italics], which necessarily understands every
structure of thought as an element in the total context of a mans life [forgiving the
androcentrism]. To me, some of the excerpts from their transcripts speak eloquently to
their lived experience in ways that paraphrase might not.
Couple #1: Jen and Rick
Home visits are interesting. I had never conducted one prior to this study. It is one
thing to enter a home as a nurse to help with some treatment; it is another to do so
primarily to elicit intimate facts about sexuality. Sitting around their kitchen table, I was
concerned. Sexuality is difficult enough to discuss with strangers in a health-care setting,
54
and I wondered if this or other couples could speak of sex and the intimacies of
relationships while surrounded by this familiarity.
In specialty clinical contexts, couples arrive with the explicit expectation that they
will talk about sex and relationships. The diplomas and framed professional
memberships, the lab coat hung up behind the door; everything that normally sets the
context that sex is spoken here was absent in these home interviews. It was initially
unclear as to how we were going to move this conversation from the weather to
discussing the core events of their lives.
One thing immediately obvious from the house, aside from the minor
contradictions of the SCI home adaptations, was how this house reflected the world in
which this couple lived. Everywhere we turned, there were reminders of the life that had
given them so much joy-and so much grief. Cowboy boots were at the door. The walls
were festooned with insiders tools of the rodeo trade, such as elaborate saddles, cowboy
hats, and an entire display of identifying competitor markers, designed to look like
shields. These were the same markers that Rick wore when his back was broken by an
omery horse as it flipped over on him in the paddock, and it was no shield at all:
Interviewer: Could you tell me some details of your accident?
Rick: Ya I got a spinal cord injury. I was uh, in a chute, I was getting on a
buckin horse, and the horse went over...
Interviewer: Ya.
Rick: But, you know, I had been on thousands of them; it was kind of a
freaky deal.
This couple met, predictably, at the rodeo, where they were both high-level
competitive professionals:
Interviewer: How did you guys meet?
55
Rick: Through the rodeo, ju s t.. .1 was a professional rodeo, and so was
Jen. We kinda bumped into each other; I think she initiated it [Laughs].
Interviewer: Is that true?
Rick: She tracked me down.
Interviewer [to Rick]: Did she cut you out of the herd?
Jen: I did but I...[laughs].
Rick: I was easy to catch.
They had been together for about 3 years before the injury, well established in the
community, both from generations of ranch stock themselves. These families were
accustomed to seeing each other through hard times, and staying together: both Rick and
Jen let me know that both of them had intact families of origin with parents who had been
together for many decades. Breaking up after the injury did not strike either of them as an
option. As Rick said, Bottom line, she wants it to keep going, and she knows I do too, so
we, you know, live our lives. They mentioned repeatedly that strong family support was
one of the main reasons they were together today. Pryor (2000, p. 126) concluded that
family functioning buffered spouses against many negative aspects of life after SCI.
This protective effect was most evident in the areas of marital happiness, dyadic
adjustment, and sexual satisfaction.
The injury came not only as a shock (how could it not?) but also as a surprise. It
never occurred to Jen that her husband could get hurt, and it was risks of an entirely other
kind that had held her attention:
Jen: And I was always more worried about him flying! I never once
thought he would get hurt, you know, riding, because, you know, he was a
professional and he knew what he was doing, and that never really even
crossed my mind. I was always more worried about the airplane. That
really used to really scare me, and so, hed fly through mountains, and like
I said we had situations where friends were killed and stuff, and so, there
isnt that many incidents in the rodeo arena, I mean bull riders is different,
instead of riding saddle broncs.
56
The couples formal contact with the health-care system in the acute phase was
remarkably brief: 1 month in a major hospital,
weeks in a rehabilitation facility. What
was the rush? First, the couple wanted to get along with their lives, and their intention to
rely on formal services was minimal (Jen: I think its all the rehab and all the housing in
the world cant help until you help yourself, until you get out and figure it out, you know,
for yourself.) A more compelling reason was present: the couple was 7 months pregnant
at the time of Ricks injury, and their first child was born within 2 weeks of returning
home.
Despite their hasty exit from healthcare services, the couple had few complaints
about their overall rehabilitation. Luckily, Rick and Jen had rehabilitated in a facility with
sexual health services although their contact was fleeting. Their desire to prepare for the
birth of their baby and get out on their own, plus a sense of being overwhelmed by their
current situation, caused them to be less than fully focussed on longer-term sexual issues:
Rick: I dont think, I thought it was good, but, we werent ready to listen,
there was so much that was, you know, like I said, a big concern, still is
for me, but right at the first few weeks, thats just, thats the last thing I
wanted to talk about. Thats how I felt anyway. Like we kinda listened,
being serious, but it was too much information and something.
As a result, Jen and Rick did not take advantage of counselling or sexual health services.
Rick stated, I thought it was good, but we werent ready to listen; there was so much
that was, like I said, a big concern.
Many couples might have rejected the world that had, like that horse, turned on
them so suddenly, but they were level headed, and loyal to their previous life. It was just
a horse; it was just bad luck. The familiarity of the rodeo life and, paradoxically, its
57
power to diffuse their personal struggles, has been a strength for them. For this couple, it
was a constant balance between separateness and intimacy that must be kept:
Rick: I think we really have to stay open to each other... I dont know
thats how I feel. [To Jen] What do you think?
Jen: Ya, I think Rick is better at it, he, Im, I know Im guilty, I hold
things in, you know, and thats just the way I am, about lots of stuff; and
hes good because he tries to get me to talk, and that helps.
Interviewer: So he can kinda coax you out a little bit.
Jen: He does, and to a certain degree I think there is a lot of stuff I do keep
in, but I think its just my personality, and, and maybe my horses are such
good healing power, because I can go out there and think about a lot of
stuff.
Although they both had agreed that the relationship was strong, the sexual aspect
had been a severe disappointment. Jen has struggled to see her husband in the same light
as when they were first married. Even though medications had helped a bit, it was Jen
that was having a great difficulty with adapting to the changes:
Interviewer: Anything else thats hard for you to communicate as a
couple?
Jen: No, you know, I think thats probably been the hardest thing, the sex.
Its hard to believe, you know, things arent the way they used to be, his
body and everything; its just different.
These were thoughts she felt were better shared with the interviewer in the absence of her
husband.
Contamination of roles was a significant factor in Jens difficulty relating in a
sexual way with her husband. The conflicting expectations that Jen be both a caregiver
and a lover had made it difficult for her:
Jen: I guess what I found that over the years you take a role as a nurse, and
when you do that it kind of loses some of the sexuality part of it.... I think
maybe men (Maybe I shouldnt say men, but) maybe theyre more
comfortable with, um, a .... Like he just kinda thinks that I should do those
things, like some of those things when he first got hurt. I guess Im just
not that kind of person to ... not a nursey type person, okay?
58
Interviewer: Its okay; you can say it.
Jen: And, I think he thinks I should just do that, and I did, I did it, you
know, and, um.
Interviewer: In some ways it changed things.
Clearly, being thrust into a role for which she had no appetite-the nursey role-had a
kind of desexualising effect for Jen. She found that sometimes she cannot easily
incorporate these different roles: And its hard because, Rick thinks I should just be able
to pick up kinda where we left off, but I cant. Sometimes the things we do for love are
not the best things for the things we do for sex.
Rick has been trying to do his bit, sometimes with tragicomic results. Although
the couple did not seek out much in the way of sexual health education at the time of the
accident, that did not mean the matter was unimportant to them. Within a few months,
Rick had begun to try erection enhancement:
Interviewer: You tried the injections, and how did that go?
Rick: Terrible. Terrible! [Both laugh ruefully].
Interviewer: What were the worst problems with the injections?
Rick: Well, it worked pretty good there, but one time I think I got too
much stuff in there [Jen is laughing in the background]. I had a stiff one on
there for a few hours, and I think that was the most embarrassing thing to
have to go to Emergency and um, tell them the whole...
Rick found little dignity to the process of self-injecting his penis, judging by the
tone of his description. With ICI, sex has to be largely planned to take advantage of the
window of opportunity of around an hour of drug effect. Adequate training in the use of
these medications requires time and often repeated visits, which fits poorly into both the
prescribers and the patients schedules. The erection that ICI furnishes, though
connected to the body, is disconnected from mental arousal, and the actions of either
59
partner. The combination of cost, discomfort and unsatisfactory results causes many
couples to abandon this method. (Rick stated: And there were different stuff, I bought
this kit, paid a lot of money for that thing. Jen: Ya, and I think a lot of it was I; I didnt . ..
that stuff just didnt appeal to me.) Sometimes, the partner performs the injection, but in
my clinical experience, this is an act that the men generally choose to perform on their
own, unless their SCI is such that their hands do not work. If this is so, another
dependence is visited on the injured male partner. Rick and Jen abandoned the injections
after the Emergency visit.
This bad experience was a blow to their plans to try to resume some semblance of
a normal sex life. Sildenafil helped, but things were nowhere near the same, particularly
for Jen. Ricks main aim is to get functioning again:
Interviewer: You mentioned something about trying to reorganize your
sexual life, that there was a place you were trying to get to?
Rick: Id like to get it where it was. I know its gonna have to be different.
Its my priority, Im the man, I wanna take care of her needs, and thats
what I was thinking, if theres one thing our relationship could have, thats
one area, it could be a lot better in that one area.
However, there was also a continuous tension between them. Rick was not sure
that he could believe his wife when she told him that good sex does not mean mostly a
good hard penis. Jen seemed adamant-when talking to me as a couple and alone-that the
penis is not the central element for good sex for her:
Interviewer: Um, how important is the whole erection thing?
Jen: I dont think it is important at all.
Interviewer: You dont think its important at all. Is there any w ay... do
you think its hard for Rick to believe that?
Jen: Ya, because he always thinks hes gotta...hes done all these different
things to try to ...get a hardon [laughs]. I keep telling him, that thats not
really important. Its hard for him to let go of that. And I think its him, he
thinks he needs to be a man, you know.
60
Jen had some suspicions of her own. She knew that physically it is now very
different for her mate, and she found it difficult to imagine that sex was still pleasurable
for him:
Interviewer: On a very basic concrete level, what is the most difficult
things you notice?
Jen: Well, I guess I have a hard time, its hard knowing that theres no
feeling there for Rick, and hes saying that the feeling comes from inside
his heart, but its, ah, and I guess its my mental part of it too, you know.
Its, um ...
Interviewer: Thats hard to believe?
Jen: Its hard to believe.
In some way this act of mutual withholding of the truth was also a testament to their
mutual caring. If one believes there is no good solution to a problem, and one also
believes the partner is doing their best, perhaps each sharing their despair with the other
is the speaking the unspeakable (Wright et al., 1996, p. 142). Does everything need to
be communicated? Or can people not avoid communicating something important to them,
in some way? At any rate, in this small way, there was a small place of disappointment
and sadness that was private.
Not all that is private is secret, and vice versa. Risen (2003) distinguished
between the two: private sexual thoughts
are the myriad of images, fantasies, and attractions that do not impact on
ones real sexual relationship, but that one might not want to share with
ones partner because to do so would be unnecessarily hurtful and would
serve no useful purpose.... [Secrets] are thoughts or behaviors...that
would be, if discovered...would impact the relationship negatively or
would be if discovered, or those that represent a betrayal of a vow,
agreement, or shared value system, (p. 1 1 )
This couple had stayed together. They knew early on that the odds were against
them. Jen said to Rick, They told us the statistics werent very good when you got hurt.
61
They consoled themselves with the awareness that some people are worse off than them;
that some change is natural; that not everything that is dissatisfactory comes from the
injury. The relative loss of their sexual life was handled in a similar manner:
Jen: Like, I think you can find other ways, I mean, I guess sex is
important, but after youve been married for awhile, love comes in
different ways, right? Its not all just about, sex all the tim e.... When they
start having kids, their life changes too, so, I think that is just part of life
and being married, and growing together. Your love changes in different
ways, you know, and sex doesnt become as important anymore.
It seems that goodwill, good families, common sense, and a balance between sharing and
compassionate circumspection-good fences, if you will-have kept this couple together
after an extraordinary setback to their lives.
Couple #2: Curt and Rose
The house was on the outskirts of town. When I arrived, Curt was sitting in a
sunny pocket in the front lawn of the house, which had been landscaped to provide a little
alcove where a wheelchair could go. As we wheeled into the house, I noticed that the
door was even with the front yard, and there were no stairs to negotiate. Clearly, this
house had been designed with wheelchairs in mind.
Within minutes, Curt and I came upon a fascinating coincidence. We discovered
that both of us had attended high school in the same small town, thousands of miles
away, at the same time. With amazement, we shared the names of people we both had
known. One teacher at his high school had coached him to a national gymnastics
championship;
10
years later, having changed schools, that same teacher taught me, and
coached my brother to a provincial championship. There in the cool Alberta sun we

found a shared history from 30 years ago and thousands of miles away. This coincidence
62
created an easy familiarity that soon translated into some good-natured teasing from the
couple. When Curt said that he had no other real damage from his accident apart from the
SCI, Rose noted a patch on his scalp that had never regrown. Curt denied it was an injury
by remarking that I had a similar patch on my head-though mine is from male pattern
baldness.
Our shared recollections meant that the interview was off to a running start before
even entering the house. When we did get inside, Curts wife Rose was making cookies.
Amongst the sound of oven buzzers, the hum of a teakettle, and the coming and going of
their adult son, we began a conversation.
This couple had a distinctly different feel from the onset. They clearly knew each
other well, and as it turned out they had been married 20 years before Curts accident, a
skiing mishap that Curt said caused almost a complete transection of his spinal cord,
and almost killed him.
Curt: I just lost an edge in a bad place on a hill when I was coming to a
stop, fell down on my side, and started sliding down the mountain, and
eventually collided with a tree. As well as the broken back I had a
fractured pelvis and a punctured lung and a ruptured spleen.... I dont
remember any of that part, but, they got me out, brought me down, on
oxygen, into an ambulance, and I was met on the main highway by
STARS [air ambulance], and if it hadnt been for STARS, I wouldnt have
made it to the hospital.
Curt spent a month in intensive care and close to 4 months total in hospital. His recovery
was relatively uneventful. He had few urinary tract infections, and without any touch of
irony Curt explained how the completeness of his SCI actually benefited him by almost
eliminating any muscle spasms!
63
The hospital convalescence was challenging in other ways. Curt was on a
rehabilitation unit that to his mind primarily served stroke victims. Many of the facilities
in the hospital were not wheelchair-friendly, so he could practice only some of the tasks
he would need when he returned home. Home was no better, and a man who used to be
extraordinarily active found inventive means to move around:
Rose: Oh ya. I think that was probably the worst time, it was far worse
than the hospital time.
Curt: It was.
Rose: And it absolutely did not get better until we moved into this house,
because he was frustrated all the time. All he could do was lie around on
the couch, and read, that wore off pretty dam fast.
Curt: We did manage to build a bit of a wooden elevator. My brother in
law helped, and we put it in the garage, and we had a boat winch; that
went through a block and tackle, and I could use that to get in and out. At
least I could go through the garage, and lower myself down and go take
the dog out with a ball in the cul-de-sac, at least get out in the sunshine,
and then go back in, and crank myself back up.
So, in one of the most advanced communities in the world, his temporary solution to
mobility problems was one of the earliest mechanical aids invented. Dangling from a
rope in a wheelchair inside his own garage, I wonder if he sensed the irony.
Curts accident created a ripple effect through the family. Before the accident, the
whole family skied weekly, cycled frequently, and loved to travel. Only now, 7 years
later, are things returning to some semblance of a new normal.
Rose: [After returning home from hospital] we immediately dove in to
designing this new house. W eve just gone from one huge thing to the
other. But this year we took a trip down to Florida. We were there for nine
days, on our own, and all about.... First time weve ever done that. Thats
starting to approach being normal! [Laughs.] So every year we seem to, I
suppose, spread out a little more, you know, and try different things. And
w eve always wanted to go visit Australia, and actually, after the Florida
trip was the first time Curt actually started to talk about it seriously.
64
In contrast to the interruption in travel plans, Curt and Rose decided to work at
getting their sexual life back on track quite quickly:
Interviewer: So how long after you came back to your place...
Well, I guess Im making an assumption here! How long after your injury
did you either talk about, or contemplated, or actually attempted any kind
of sexual intimacy?
[Both laugh]. Rose: We did that in the hospital!
Interviewer: Thats why I, I amended my statement before finishing it!
Rose: It fact it was easier there, because once he came home, until we
moved into this place, there was a certain level of tension and frustration
just because he was upset and I couldnt do anything about it, you know?
So neither of us were very comfortable at that point. That was the rockiest
point.
Interviewer: So you were able to get it on in hospital? Lock the door?
Curt: No we just had curtains around the door, cause I was in a room with
other [patients].
Ironically, the hospital environment provided more privacy than a house with kids,
particularly when their bedroom activity depended on manually lifting Curt up a flight of
stairs.
Compared to Rick and Jen, however, this couple made a series of different
decisions about rehabilitation with respect to resuming a sexual life. They decided early
on to set some boundaries and stick with them. First, they intuitively recognized the
often-uneasy tension between the demands of caregiving and the challenges of sexual
relating. As a consequence, Curt and Rose kept some roles separate. Curt, who has no
control over bladder or bowel function, took on the management of these areas himself:
Rose: No, right from the start, Curt decided to look after that all by
himself, and that side of the whole thing hes kept very private and
personal. Which is probably a good thing.
Interviewer: W hats your feel about why thats a good thing?
Rose: U m ...it subtly changes a relationship from being husband and wife
to nurse and patient. And a lot of times its really difficult to shift back and
forth.
65
Not obliged to function in a nursing role, Rose felt freer to reestablish her identity as a
romantic and sexual partner.
Curt and Rose found that a reorganisation of their sexual life was necessary. For
Curt, this involved a shift away from his genitals, and a shift in the very meaning of
pleasure. For Rose, this was a shift she had been secretly hoping for anyway during many
years of relationship. Much of this involved adjusting the customary pace of their
lovemaking to better fit Roses rhythms:
Rose: He started to become far more attentive to me, when things settled
down. Instead of just hop in bed, I was getting flowers, and glass of
sherry, and a hot bath, and I thought,, Whoa!
Interviewer: Kind of like courtship all over?
Rose: Well, he figured out that what it took to cause Rose to be interested,
was to allow me to wind down a little bit, and catch my breath, and
actually sit down. What an amazing thought that was, you know! So, he
would start creating the atmosphere ahead of time, and that worked! And
so I would say that in the last couple of years the sex has actually been
better than its ever been.
Interviewer: Really. Even before the injury?
Rose: Oh ya, because before the injury, he was energetic, and physical,
and, Curt has huge physical abilities. Curt was junior national champion
gymnast for Canada, and he was go go go, hop into bed, five minutes,
ready, Go! Sort of thing.
Interviewer: Doesnt that get painful sometimes?
Rose: Well, ya!
I was taken aback by a little detail in Roses speech. She said, Curt has huge physical
abilities, not had . So, despite the wheelchair, she saw him as the vital sexual partner
she married. This retention of a an image of the vitality of the injured other has been
noted before (Neumann, 1979).
The abrupt, rushed, intercourse-focused style of their previous lovemaking never
suited Rose very well. This was not about power or affection; for Rose it was about
respecting the added role stress and responsibilities caused by Curts injuries by giving
66
her time to navigate the role shift from the domestic to the erotic world. The gifts, prior
attention and preparation by Curt subtly communicated Curts respect for those
responsibilities, and not simply an opportunity for Rose to catch her breath.
Rose identified a huge discrepancy between the importance she assigned to sex
and what she perceived as where her husband situated sex. For Rose, even though she
enjoyed sex, has a spontaneous libido, and does not care about the changes in Curts body
caused by the injury, sex was not highly important to her:
Interviewer: Did you ever have any interest in him getting some kind of
erection enhancement? Was that anything that mattered to you?
Rose: No, it didnt matter to me, and to tell you the truth, it wouldnt
matter to me if we didnt ever have sex again. It really doesnt. To me its
not a huge part of this relationship, to him it is. You see hed never accept
that. He doesnt like to hear that, because its such a large portion of the
relationship.
Interviewer: So you wouldnt miss it.
Rose: I wouldnt miss it.
Rose saw the role of sex for Curt as much more than about satisfaction or satiety.
She sees it as a matter of her husbands identity:
Rose: A mans sexuality seems to be much more tied up in their definition
of their person than...and their role, and their functioning, than a womans
is. If they decide that they need to be a man, and they have to function in
bed, I think some men would either try to prove it, or others would back
off and switch from being the man of the house to being one of the kids,
because they cant assume that sexual role: cant have sex anymore, cant
be a man, period.
I could not help but detect a sense of sympathy towards her husband coming from
Rose. She seemed to feel sorry for Curt, not because he was injured, and not because this
interfered with his sexual functioning, both of these factors, paradoxically, had improved
their sex life for her. However, Rose could intuit how much of Curts sense of his
masculine identity seemed to be wrapped up in sexual performance. Rose also noted that
67
she has changed sexually as well in the past few years, as menopause has thrown a degree
of variability in her libido and sexual response; however, these changes appeared to pose
no threat to her sense of self.
Couple #3: Brad and Robin
Gorilla: [An alleged African name for a wild or hairy man (strictly for the
female only), preserved (in acc. pi.) in the Greek account of the voyage
undertaken by the Carthaginian Hanno in the 5th or 6 th c. B.C.; hence
adopted in 1847 as the specific name of the ape Troglodytes gorilla, first
described by Dr. T. S. Savage, an American missionary in Western
Africa.] [1799 Naval Chron. I. 451] Another island full of savage people
whose bodies were hairy, and whom our interpreters called Gorillae.
(Oxford English Dictionary Online, 2000)
I could not stop looking at that shirt. It was the kind of shirt that a young boy
wears. It had a black background, artlessly drawn foliage, and in the foreground a large
male gorilla, pensive, proud, almost regal. Not angry, but maybe a bit formidable; also,
an unmistakable sense of quiet dignity emanated from the eyes. It was the kind of shirt
that somehow would somehow get accidentally destroyed by bleach in the basement by
a less conciliatory mate. An interesting choice of clothing, I thought, for meeting a
university researcher. Maybe I was making too much of it.
Brad: I have so much time on my hands out there. I am going to do some
film school soon.... They have a little building up there, completely
accessible.... I have always enjoyed writing, but since I was injured I have
been looking for other careers I can do. Maybe directing will be a bit of a
challenge when you are in a chair.
Interviewer: Well dont forget the little people when youre on top! [Robin
laughs]
Brad: Well I dont want to get ahead of myself. One step at a time.
Sitting in his wheelchair, the gorillas eyes stared out from the shirt. I have the
best seat in the house, Brad said, but not a seat of his own choosing:
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Brad: I was out of it for 2 years.... But of course 2 o clock in the morning,
I nodded off, I came to, overcorrected myself, flipped my truck. I wasnt
wearing a seatbelt, I flew out the side window. I was unconscious for a
while, I landed on my head, and I guess I had some memory loss. I
remember looking up at the sky, trying to figure out why I was laying on
the highway; I guess I was in shock. I wasnt in any pain. A truck driver
came by, saw the truck on the road, then he saw me, And I was laying on
the road about a hundred feet in front of the truck, so he was heading
towards the truck, swerved the last section, he was driving a double trailer,
and he didnt know if hed missed me or hit me with the back trailer. It
was that close. Said he sat in the truck for about 5 minutes, then decided to
take a look.
I wonder about what that driver, sitting in his truck, was thinking while Brad lay
broken, breathing, waiting on the road in the dark and silence. Brad was in painless, quiet
repose; the driver did not know what awaited him. Had he killed someone-or only
affronted a dead mans body? Could Brad hear the drivers breathing, at that intersection
in the dark?
Her husbands spinal cord injury thrust Robin into a whole new set of unexpected
necessities. The initial shock soon changed her body:
Robin: Ya it was 50-50 if he was going to make it. That was very
overwhelming, and youre dealing with the family, and everybody is
around you; thats the worst part, because everybody is around, and you
just want to be with him .... Theres so many decisions to be m ade.... I
needed to go back to work, and over the course of a year I gained 60
pounds.... I really fell into the day-to-day.
Brads body had become half, a body that transmigrated under the sheets and was
taken up by Robin:
Interviewer: Tough place to be, when you feel like your mate would be
better with somebody else.
Robin: Ive felt the same way! H es not the only one who changed
physically.
Brad: She changed as well. She had to go on medications for stress. I was
the breadwinner but then she had to become the breadwinner. Its like all
the pressure is on her, she has to coordinate my care, still try to have a
69
career of her own, without leaving me to .... She had to balance a lot.
Robin: I would have never pictured him that way.
Brad: I was a strong guy, muscles, weights, boxing.
So Brad is forced to beat a retreat to the den, while Robin was forced out from the
sanctuary of childrearing and home to the market, dragging half of Brads body with her.
Sometimes we beat a retreat perhaps to fight another day. We head to the hills; but
sometimes a retreat is a defeat and the direction is other than planned:
Robin: Moving out to the country was the worst thing that could have
happened. It was our goal and our dream, but you know what happened,
we went Its still normal. The thought never crossed us to make new
dreams. And we moved out to the country and I could watch him go
downhill, its been 5 years now, and its time to move on.
I had interviewed this couple about their sexual life about a year earlier. Since that
interview, things had changed sexually. A relative had begun a sex-toy sales business and
had introduced them to new sexual possibilities-something they might not have
considered previously:
Interviewer: Did it surprise you that it was an option? Never occurred to
you before, right?
Brad: Uh, not really, because I think it was a matter of, the unfamiliarity
with it and, maybe the idea of having to resort to that, hadnt entered your
mind, until somebody explained the benefits and that everybodys doing it,
everybodys using something else you know, especially this far in your
relationship you have to spice it up a bit. I guess we never looked at that
part of it.
Robin: And I think it has a lot to do with the emotions [unintelligible]. If
my sister were to have done that last year, I probably still would have had
nothing to do with it, because I had to change my mindset. And hes just
trailing away the whole way. Whatever changes come along hes good for.
As long as theyre positive, hes good to go. But again, I think if it had
happened a year ago, wouldnt have had anything to do with it.
Interviewer: How come?
Robin: Because I ju st...I wasnt ready to go that far.
70
Once they settled onto the idea that this exploration might be a positive choice, and not
merely something that they had to resort to, and that everybody is using these things,
they were able to consider playing with the toys. They became enhancements, rather than
aids for the disabled.
The sexual life of a SCI couple undergoes a transformation and the roles shift in
the bedroom as well:
Interviewer: Ill pose it to both of you: whats the thing about your
previous sex life you miss the most?
Brad: I miss picking her up from the kitchen and carrying her to the
bedroom.
Interviewer: Cave man!
Robin: Hes a very physical guy.
Brad: Throw her on the bed. Rip the clothes off, you know, me cave man,
you know its me, you know, grab her, start touching her, that was a real
turn-on, and against her will sort of, youre saying no no no, but your
bodys saying yes yes yes. And I cant do that anymore.
That is the most painful loss for the couple. Once again, she has to find enough of
the wild man, the Lord of the Animals (Bly, 1990):
Interviewer: If you could tell one thing to couples in your situation, what
would it be?
Brad: A bout...?
Interviewer: About a sex life-what would you tell them?
Brad: You know its still possible; you can have a sex life. Theres
injections, and, its a necessity to have it in a marriage, that intimacy.
Robin: And you have to take on different things, so like he was the most
aggressive, the most physical, throwing me around and all, now most of
the work comes from me. All the good stuff comes from here [points to
her head] but the work has to come from me. To be able to accept that
change.
Brad: And advice to never never give up on the sex life.
Brad and Robins journey of sexual rehabilitation was one they had to make on
their own, as no counselling was offered to them around relationships and sexuality. In
their opinion, the only counselling they got was a waste of time:
71
Interviewer: What tells you if they [clinicians] are just psychoanalyzing
you?
Brad: When youre getting some benefit out of it. All of it was How are
you feeling? Why do you feel that way? Its just a lot about your
unloading, and all theyre doing is taking notes. Hows that benefitting
me?
So, they were just beginning to stumble through this landscape, using medications
prescribed to others, trying self-injection with no training, with limited results.
I had to ask about the shirt:
Interviewer: I wonder if thats one of your favourite t-shirts?
Brad: A gorilla! Thats what I feel sometimes like...I only got my arms to
use now, and gorillas kinda drag their knuckles against the ground.
The couple tried to retreat to the woods, where a savage goes to repair. They
found mostly isolation.
Eventually they moved back to the city. Although they missed the outdoors, and
they worry about big-city crime, it was a good decision for both of them. The move
allowed Robin to spend more time at home with less commuting, and this made her feel
closer to Brad. She also has noted an enormous change in her husband:
Robin: When we were out in the country, he was having a hard time with
depression, so thats kind of an automatic turnoff. Even if you want to
console and try and help, thats not in a sexual way, its more emotional.
And now that weve been in the city, hes been like a different person;
hes been back to his normal self, and that-the hum our-thats what attracts
me to him.
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CHAPTER 8 :
INTERPRETIVE ANALYSIS
As I have presented the interpretive descriptions of the interviews, I wanted to let
each couple tell their story as a coherent whole. By coherent I do not mean to imply
that there is some kind of natural order or symmetry to the couples experiences, but
neither are the couples experiences utterly random. Their earlier choices and experiences
constrain and privilege later choices and experiences. I am attempting to create a context
for understanding the mystery of the inwardness of the other person (Gadamer, 1984, p.
57).
The interpretations offered in the previous chapter are inevitably selective. They
represent a mix of those elements that appear to have something to say regarding the
research questions developed in the earlier sections, as well as unanticipated elements
that arose from the interviews. This is caused by my curiosity, although not the curiosity
of someone who merely gapes at something (Gadamer, 1989, p. 126). Likewise, the
analyses offered in this chapter offer a selection of observations and insights but are
unable to exhaust the possibilities of interpretation (Ricoeur, 1976).
The Course of Sexual Rehabilitation
It is notable to me as a non-expert in physical disability rehabilitation that the
overall consequences of SCI can cause permanent or near-permanent changes in family
and couple patterns. Not only that, but the coupless perception that they have returned to
normal, in some kind of emotional or psychological sense, was delayed for these couples
73
for many years. In terms of sexual rehabilitation, a perception of a return to normal may
never arise. Rick and Jen were so deeply within a lifestyle that it enclosed and supported
them at every turn, and although their erotic life remains dissatisfactory, it seems to them
that these other things such as their friends, family, and life with animals are the markers
of a return to normal.
Back to normal. Every couple used this phrase. Clearly, back to normal for
these couples meant not necessarily recovery of function - none of the couples were
under any illusions about the physiological future - but some feeling of getting back to
some before. Back to normal appears to be a state of mind, not a situation, since there
was little or no long-term recovery of sexual function for these men. Back to normal
meant making plans for hopes put on hold because of the accident they suffered.
Sexual Rehabilitation and its Relation to Physical Function
As I had discovered from previous clinical work, the progress of sexual
rehabilitation can be related to general rehabilitation in some cases, but that relationship
is unpredictable. General rehabilitation and sexual rehabilitation clearly can have very
different trajectories. Curt and Jen found that Curts SCI caused a loss of sexual function
and a loss of their sexual life from which they had not really recovered. Rick and Rose, in
contrast, found that the lack of sexual function caused by Ricks SCI propelled them into
a new sense of sexual relating that Rose actually found more satisfying that what they
had before. Brad and Robin appeared to fall somewhere in between, largely through
experiencing a benefit from a significant sexual role reversal on the part of Robin.
The anatomy and physiology underlying human sexual function is every bit as
complex as the social universe underlying human sexual behavior and attitudes towards
74
sex. Although biology may not be destiny, when examining the physiological deficits
experienced by spinal cord injured men, it is not unimportant. From a clinical standpoint,
it helps to understand the common functioning problems experienced by the men in my
study, who have sustained various degrees of spinal cord damage.
The male penis is comprised of two types of erectile structures with a similar
underlying vascular physiology: the single corpus spongiosum which surrounds the
urethra, and the paired corpora cavernosa which essentially ride atop the spongiosum
(Porth, 2002). These structures are encapsulated separately in fibrous sheaths although
there is collateral blood circulation; thus, intracavemosal injections (ICI) of
phentolamine/papavarine or prostaglandins for erection enhancement into one barrel of
the cavernosa also induces erection in the neighbouring barrel (Monga et al., 1999;
Richards, Lloyd, James, & Brown, 1992).
The trabecular smooth muscle in the penis is enervated by sympathetic
(S 2 -S 4 )
and parasympathetic (T 12 - L 2 ) nerve fibres, including the cavernous nerves which

enervate the arteries supplying the penile smooth muscle (Holmes, 2001). During sexual
arousal, these nerves drench the smooth muscle in nitric oxide (NO), which activates
guanylate cyclase, producing cyclic guanosine monophosphate (cGMP), leading to
smooth muscle relaxation (Morales, Gingell, Collins, Wicker, & Osterloh, 1998).
Phosphodiesterase enzymes, primarily PDE 5 , are responsible for cGMP breakdown and
detumescence, and the phosphodiesterase inhibitors such as sildenafil prevent this
breakdown, enhancing and sustaining an erection (Fazio & Brock, 2004). Sildenafil can
improve erectile function in some men, but the effect is rarely as reliable in SCI patients
as ICI. Sipski (1997) noted, however, that for reasons unknown, sexual function may be
75
inhibited in ways not always congruent with the presumed level of injury, and on
occasion function is preserved or partially preserved in cases where it might not be
expected. Rick and Jen found the results ultimately dissatisfactory and abandoned
erection treatment altogether.
Brain mechanisms of human sexual response are exceedingly complex. It was
once thought that there was a single central processing centre for sexual behavior in
humans, as rat studies had shown an important structure located in the medial preoptic
area of the hypothalamus (Monga et al., 1999). Although it is tempting to believe in a
central, hierarchically controlled process-an echo, perhaps of the tendency to think of our
actions as rational, premeditated, consciously controlled (Dennett, 1991) - the data does
not support this view. First, the pattern of brain activity associated with sexual activity
appears to be extremely diverse and variable, with dominant activity at different times
associated with the thalamus, the amygdala, the hippocampus, and frontal cortical
structures (Heaton & Adams, 2003; Sachs, 2000; Sakakibara & Fowler, 1999; Temel,
Visser-Vandewalle, Ackermans, & Beuls, 2004). Sachs (2000) showed that erectile
behavior, even in animals, can develop from different physiological pathways related to
different situational contexts. He did not view these as different qualities of erections but
of different types, some of which he classifies as nonsexual, such as sleep-associated
erections.
The couples demonstrate that a sexual life can be preserved even in the presence
of significant physical damage. This also shows the powerful place of belief (Wright et
al., 1996) and perception in the sexual satisfaction of these couples. It also shows the
enormous importance of romantic and sexual context for some women, rather than the
76
sexual act itself (Basson, 2002, 2003). The importance of these factors appears to be
magnified as women enter midlife. As Hartmann et al. (2004, p. 726) put it:
These results are supportive of the growing evidence against a simple
model of midlife sexuality that depicts women as victims of their bodily
and hormonal changes. Instead, life stressors, contextual factors, past
sexuality, and mental health problems are more significant predictors of
midlife womens sexual interest than menopause status itself. Evaluation
and treatment approaches require consideration of the full range of
contextual factors, including relationship quality, personality factors, past
experience, and mental and physical health.
In this aspect male and female sexuality appears to begin to converge somewhat,
as McCarthy (1999, p. 4) noted:
The danger is the male overemphasizes intercourse at the expense of
intimacy, affection, and pleasuring so the womans anticipation and
satisfaction is lowered. The other danger, especially with the aging of the
person and the marriage, is the males performance/intercourse orientation
subverts sexuality. Males over forty are vulnerable to the cycle of
anticipatory anxiety, tense and dysfunctional sex, and avoidance. The
sexual relationship becomes a source of embarrassment and withers.
Thus, sexual function itself appears to become less reliable for both males and females as
time proceeds. Closeness, context, and setting become increasingly important in the
sexual universe of cohabiting couples. While physiological functioning may decline over
the years, either through the aging process or some physical trauma such as SCI,
sexuality can be preserved.
Staying Together
From a general standpoint, the couples I interviewed may not perceive their
staying together as a complex matter:
Rick: Well I think you just gotta, you know, have that love and just work
it out. You can get therapists to help you, but the bottom line is, you got to
get together and a, you know and talk, and if both sides arent willing to
do that then I dont think youve got much hope.
77
For Rose and Curt, they had been together so long, breaking up just did not occur
to them:
Rose: I dont know if Curt felt that I might [leave], because he was, you
know, disabled.
Curt: No, you know I never did. W ed been together for a long time at that
point, and both of u s.. .there was a lot of love, and we had a lot invested in
the relationship emotionally, and so and it never really crossed my mind.
Brad saw the seeds of their marital unity as existing long before any injury, and
the injury as almost irrelevant:
We had a strong marriage. Other people had a rocky marriage. Ive asked
a couple other guys, actually who broke up... right at the time of the
injury, Was there trouble in the marriage before you were hurt? They
said Absolutely; we had problems. Its like a big magnifying glass.
One might wonder if all three couples stayed together because they had a strong
marriage before the injury. They had never contemplated or discussed separation.
Handling this new future together was a given, not a matter for renegotiation in light of
changed circumstances. Their union did not hinge on the SCI or the status of their sex
life, and if there was a single non-negotiable issue for these marriages, it was not spoken
during the interviews.
The Stigmatization o f Disability Relationships
Keeping together after spinal cord injury has its intrinsic challenges, and many
couples are unsuccessful in remaining married (DeVivo & Fine, 1985; Kreuter, 2000).
Friends and families, with their own existential and aesthetic prejudices and
preconceptions about disability and relationships (Hahn, 1990), may make matters worse:
Robin: Well you know it made me so mad, everybody saying, youre such
a good person for staying with him, and Im going, well what the hell were
78
you thinking, do you think he has absolutely nothing to offer? Im lucky
hes staying with me, cause you have no idea.
Brad: Ya and I find I get a lot of that too: Youre so lucky you have a
wife. Like, am I chopped liver? Like I still have a lot to offer, like love
and compassion. I just think its really insensitive to come out and say,
Geez, youre so lucky. But we got married for better or worse.
So, well-meaning observers (one can hope) expect expressions of gratitude on the part of
the injured partner about having a mate willing to stick with them, as if the injured one is
disposable damaged goods.
At the same time, onlookers may idealize the partner who is willing to be with a
disabled person, as if self-interest would be insufficient, and so compassion (or
sympathy?) must be at work. Similar attributions are made of uninjured partners who date
disabled persons (Goldstein & Johnson, 1997; Rintala, Howland, Nosek, Bennett, Young
et al., 1997).
Shuttleworth (2000), in a study of the romantic experiences of men with cerebral
palsy, noted that legislation has the effect of levelling access discrepancies in most areas
of social interaction. However, no legislation can provide access to a romantic partner:
In love, personal prejudices reflecting social attitudes toward and cultural
meanings of disability and hierarchies of desirability are thus given free
rein. Access to this interpersonal context for disabled people thus cannot
rely on the rule of law or public policy, (p. 264)
In a more prosaic bent, Shuttleworth (2000, p. 264) quoted one of his interviewees as
saying, with blunt honesty, I dont give a flying fuck about the ADA [Americans With
Disabilities Act] because thats not gonna get me laid!
Theories o f Bonding and Couple Cohesion
What this research points to is a social stigma about the conjoining of disability
and sexuality, of the disabled and nondisabled, about the fitness of the disabled to
79
participate in erotic or reproductive life. This is a stigma easily internalized by the
disabled as well (Goldstein & Johnson, 1997). One recollects the elaborate arguments of
Buss (1998, 2004) whose writings on reproductive fitness implied a evolutionary basis
for this stigma.
Yet, even though onlookers and friends, by implication, may view a disabled
partner as less fit, the experience of the couples is vastly different. None of the uninjured
partners, together or alone, expressed any real thought of leaving their mate as a
consequence of the SCI:
Brad: Like, Im very low self-esteem since the injury. Maybe I think its
better for her. Maybe she should find some other guy; it would be better
for her.
Robin: But when he says that, I know where its coming from ...from his
insecurity. Its ju st...it would never be an option.
Jen expressed similar sentiments:
Jen: I dont . . .like I never really thought that.... Like I really want to stay
together, as a family, you know, and we have a daughter, and I think it
makes you did down deep and try a lot harder, you know? And, you know
Im really happy right now and its not like I want to be anywhere else.
The experience of these couples is not atypical. Kreuter, Sullivan and Siosteen
(1994a), in a survey of SCI couples, found that only 9.5% of those female partners had
ever reported contemplating separation or divorce. Perhaps SCI represents a threat to
cohesion largely in those cases where separation is already a potential issue, although this
matter is still not clear.
What makes somebody a good catch or a good mate? What makes a romantic
partner a keeper? Is there some kind of universal, underlying mechanism or tendency in
mate selection? Is romance a matter of competition for a small pool of particularly
80
desirable mates; a matter of individual personality fit; an extension of unmet infantile
needs and tendencies; a consequence mainly of proximity, pragmatism and circumstance?
The significance for the present study is that disability seems to have an impact on
marriage and committed relationships. With the increasing voices of biology and
evolutionary theory in the study of mate selection and retention, it is reasonable to
investigate whether SCI might in some way change the perceived fitness of an injured
partner.
The couples in this study have managed to stay together despite a serious health
care crisis in one partner when the against them are low (DeVivo et al., 1995; Kreuter,
2000). Moreover, health-care professionals treating SCI couples may not be very
optimistic about SCI couples marital future. One couple reported that during their
hospitalization, they told us the statistics werent very good, but one of the partners
later observed to me that, I know theyre not. But theyre 50-50 even at best [in
uninjured couples]. This study is not designed to actually answer the question of how
people meet, connect, and cohere as committed couples, but it is important to examine
received ideas about dating, mating, and bonding since they these ideas form the
backdrop for clinical care and general attitudes of the community surrounding these
couples.
There is a range of theories that suggest that togetherness happens as a function of
particular meshes of personality or concordance of psychological resources, such as
differentiation theories (Bartle, 1993); social learning theories such as sexual scripting
(Gagnon, 1973); and feedback theories about the role that sexual satisfaction plays in
overall relationship satisfaction (Sprecher, 2002). Alternatively, John Gottman and
81
colleagues (Gottman, 1993; Gottman, Coan, Carrere, & Swanson, 1998; Gottman &
Levenson, 1999) developed an empirical framework of what not to do to maintain
relational coherence. However, any observer of humankind has to be struck with the
incredible variety of human pairings that occur and then seem to thrive against all odds
and the pessimistic predictions of everyone around them.
These partners did not experience some reflexive desire to upgrade to another,
undamaged partner, and they did not somehow perceive their partner as less fit asaresult
of the SCI (in contrast to the opinions of some friends, evidently). I would not presume to
say that the experience of these uninjured partners disconfirms sexual selection theory
(Buss, 2004) but their experience does not support it. Sexual selection theory is almost
undisprovable, inasmuch as it posits the existence not exactly of a force but of a
substrate, more subtle than the solar wind, more pervasive than dark matter, and yet it can
is easily trumped by circumstances such as simple proximity and shared history in the
real world of human mating (Lykken & Tellegen, 1993; Rauch, Cohen, & Johnson,
2003). As Jen said, leaving would never be an option; as Robin put it,
Interviewer: What was keeping you together over all these years?
Robin: Honesty. And listening. You have to be able to listen as well.
W eve been together so young, its like w eve grown up together.
Sexual selections theory draws heavily on evolutionary theory. Its assumption is
that members of society are the survivors of a process of natural selection, which implies
that in order to survive, their choices of mate must be evolutionarily adaptive, i.e.,
inherited from predecessors that led to success-which is measured by differentially high
rates of reproduction. Therefore, mate selection must inevitably be strategic (Buss, 1989,
2004). However, what is strategically beneficial may be what is immediate and familiar,
82
such a mate right there, even if they are seriously injured. Perhaps a known quantity, such
a mate with a serious disability, is a better bet for raising children than some uninjured,
yet-to-be-found new prospect. Pragmatism is just that, and sexual selection theory has a
very difficult time with the mundane circumstantiality of human bonding. Additionally,
no studies have examined if respondents opinions on surveys of ideal mate selection are
translated into actual choice of mate (Hazan & Diamond, 2000); doing this would involve
the very difficult task of determining if individuals went beyond expression of preference
to actual preferential selection of mates with qualities consistent with sexual selections
theory . Hazan and Diamond (2000) concluded that
It is perhaps ironic that social scientists have taken the premise of strategic
selection at face value and devoted much research attention to identifying
the criteria on which such selections are based. Human mating may be
more "adventitious" than is generally assumed, (p. 188)
Sexual selection theory has thus entered into our cultural fabric without the
evidence essential to strongly justify it. If taken as gospel, it could preclude investigating
other explanations, such as the role of simple proximity and demographic similarity
(Rauch et al., 2003) that may effectively trump any of the components postulated by
sexual selection theory.
We do not know what constitutes fitness-or good fit-in human togetherness. We
presume to know, and that is why other people make pronouncements about the fitness of
injured partners of other couples, by their direct statements and by implication of their
expressions of idealization (of the uninjured one) and sympathy (of the injured one). This
presumption that we can identify what is fit and fitter is more a projection of our own
personal hopes and fears than any accurate rational or perceptual process.
83
Power, Relationships, and SCI
One of the areas I wanted to explore in this study was the notion of relational
power in couples. In my clinical experience and those of others (MacKinnon & Miller,
1985), issues of power are often prominent for couples with relationship and sexual
problems. Also, when I originally interviewed Brad and Robin, Robin revealed that at
one time after the injury she lived in fear of Brad leaving her-which I found somewhat
paradoxical under the circumstances:
Robin: Sometimes [after Brads SCI] Ill be flirtatious, but I feel
embarrassed and guilty. I had to train myself, because we had a very big
sex life for years. Like how dare I think about it, the focus should be on
him. I felt guilty. I pushed him away a lot. Thank God hes still with me.
Him and his injury, hes been very patient.
Each couple was asked about issues of power during their interviews. Each couple
seemed to understand the question. During our conversation, I did not offer a definition
of power, but instead provided a space for the couples to speak of power in their own
way:
Interviewer: Is there any change after the spinal cord injury, which you
would attribute to the injury, that have to do with power relationships
within the relationships. Do you know what I mean by power? [Both are
nodding]. W hats your sense of that?
Jen: I dont think thats changed at all.
Rick: Its just you all the time. [She laughs].
Interviewer: That works best?
Rick: Ya, no [laughs]. Thats something I think w eve done very fine with.
W eve both are strong people, and I might think I got the clout, but she
can take that away at any moment, and swing the big hammer. Its a both
way deal, theres no dominant power. Money earner: were both
contributing. I think w ere both got the freedom. People cant believe it,
we all do our own little thing, Jen will go away for awhile, Ill go away
for, you know, couple days, and, we get together or we dont. Whatever,
we seem to find a balanced ground somewhere.
Jen: [to Rick] I dont think even before you got hurt there was ever a real
pow er...
84
Rick: No, and I dont think thats changed, I dont think thats changed
one bit, I think we worked that out fine. I think thats really one of our
strong points.... Jen, how hard she works and all, what she has to go
through, like, Ive got no grounds to stand on, if she, you know, wants to
do something. I think of that quite a bit.
For Rick and Jen, power has many components. Rick speaks to the mutuality of earning
power, which implies the right to spend. He speaks of how they do not rush to reconnect
after an absence, which implies a balance of affectional need. Coen (1980), in his book
You Can Negotiate Anything, noted that power lays with the individual who needs a
particular thing least. Finally, Rick verbalizes that Jens suffering confers on her the right
to freedom.
Despite the obvious disruption of Curts SCI, in Roses eyes, the partnership
never became unbalanced:
Rose: Our relationship has never been much about power. W ere pretty
much a partnership.
Curt: And nothings changed.
Rose: No, certainly.
Interviewer: So you dont think there w as...no change in balance of any
kind?
Curt: No.
Rose: Well, I assumed more of the things that he used to be able to do in
terms of housekeeping and maintenance, and that sort of thing, and he has
taken over some of the things that I used to do.
Interviewer: Im thinking more on a psychic level.
Rose: Oh, absolutely not. Because, Curt is still independent, strong-willed
as ever, you know, and just because he is in a wheelchair, youre not
changing any of that.
For Rose and Curt, power is partly about the balance of domestic contribution. Kreuter
(2000) noted that the shift of domestic duties necessitated by SCI could disrupt the
perceived equality of a relationship. Power also has something to do with indominability
85
(Kippax & Smith, 2001), in this case indominability of character. Roses sense of her
husbands essential strength was not diminished by the SCI.
For Brad and Robin, the SCI brought great changes, not so much in the mutual
power between them, but between Robin and the world:
Robin: You know, even though life has changed, physically for him, again
its all emotional for me. I was very insecure before, maybe making out
with him was a way of keeping him, because he was a big, strong, very
attractive man, and, since his injury, I had to reclaim who I was. W asnt
going to be a doormat any m ore-not for him -I mean for other people, and,
I think I became much stronger emotionally, and I think maybe that was
his struggle too, having to deal with me, that way. I was very much used to
hanging on to his ankle as he was going out the door before, and not so
much now, and Im sure that had to be an adjustment for him.
Interviewer: So there was a kind of power shift in some ways?
Robin: Ya, ya. Im glad that happened for me. Thats a very good positive
I got from the whole situation.. .is I found me. And I found out how much
more I really do truly love him, not just because hes cute and attractive
and all that good stuff, but because hes an amazing person.
Interviewer: So, it was like a transformation for you.
Robin: Ya. Ya.
Of all the individuals interviewed, the SCI produced the most dramatic existential
shift in Robin. With Brads disability, she no longer had the luxury of being the passive
ball and chain around Brads ankle, or lower, a doormat for the world, a fixture of the
home. Originally, she had no intention to claim anything for herself except the right to
adore and admire her husband. The injury launched her on a path to become a more
whole person, a more equal person, one with standing in the world and in the
relationship. This was not done at Ricks expense, or by taking his power, although
evidently Rick had to adjust. With Ricks injury, Robin had to stand up, and thereby
found a self she only suspected she possessed.
The Struggle to Again Be Sexual
86
A sexual life changes in committed relationships as they progress. While the
relationship and the sexual activity that goes with it seems spontaneous, exciting,
confirmatory in the early stages, (and every day as Brad recalls), life intervenes.
Careers, childrearing, keeping house, the multiplying of social obligations consequent to
the merging two social networks-all of these can create time management problems that
turn a sex life from a must-do activity to something that can be fit in-m aybe (Pacey,
2004; Snarch, 1998). These SCI couples are no different:
Rose: Its a lot more fun when you get to our age and you can set the
stage. You can go out together, and go out for dinner, and dress,
provocatively, and come home and have a sherry and a bath. It doesnt
always fit into a life with kids, especially young kids.
A number of important currents can be noted in these statements. For Rose, her
husbands SCI was not an impediment to sexual activity so much as these common stageof-life-cycle events. Additionally, it is not so much the act of sex but the anticipation that
she thinks of when thinking about sex. For Rose, sex is not just an act but a whole play
with a number of acts. Sex for her is not staged in the sense of being artificial, but it has
stages, and unfolds with a rhythm and relaxed paced of a well-written play. Returning to
the stage, as it were, signals a life phase where the luxury of time begins to allow for
these relaxed little luxuries.
Jen echoed some of Roses these sentiments:
Jen: I guess sex is important, but after youve been married for awhile,
love comes in different ways, right? Its not all just about, sex all the time,
you know, I mean, when you first started to date, when you first get
started, its pretty important, but I think our life has changed, you know?
Interviewer: In what way?
Jen: Well, I think the sexual part of it, has changed, and just because-and I
dont know if it has to do with Ricks accident, or, whether its the
accident and having kids, and other kids you talk to, when they start
87
having kids, their life changes too. So, I think that is just part of life and
being married, and growing together. Your love changes in different ways,
you know, and sex doesnt become as important anymore.
Jen has here identified a number of factors that intruded into their sex life. Certainly, Jen
has struggled the most of all of all of the uninjured partners to adjust to the body changes
of her mate: (Its hard to believe, you know, things arent the way they used to be, his
body and everything; its just different.... Its hard to know theres no feeling down
there.) Nonetheless, she expresses a sense that their sex life has been corralled
somewhat by those things that get in the way of other couples. At this point there is no
hint of the kind of reclamation for Jen that Rose described, and her tone during the
interview, not to mention her tears when talking, said to me that she still grieves the loss
of what they had. Perhaps there is an irony that some successful reclamations necessitate
abandoning the old claims held before. Nonetheless, in a humorous way, Jen and Rick
identified their own sense of setting the stage:
Rick: Everythings gotta work well-rounded, stuff like that. And being the
typical guy, it doesnt just start at 10 oclock in the bedroom. Jen reminds
me if I do the dishes, help out a little bit more or something, that kinda
helps around 1 0 o clock at night, or whatever.
Jen: Helps a lot!
Rick: Whether you are in a wheelchair or not! Thats pretty standard stuff.
Interviewer: So having men do dishes is erotic in its own kind of way?
Jen: [Laughs]. Makes me a lot happier. And if Im happy, hes probably
happy.
Despite their difficulties, Jen and Rick look forward to a time when circumstances are
more supportive of an erotic life. Rick said: Im sure when our daughter grows up and
leaves, our marriage will change in ten years when she leaves...the house...and w ere
gonna have to find more ways to have interest. Thats just our lives. Rick is not
hopeless, but in a sense, biding his time.
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So, Roses husband gets the sherry and the bath started; Jens husband better get
those dishes. Such are the lubricants of long-term sexual relationships, SCI or no SCI.
The changes caused by SCI are inextricably intermingled with the changes caused
by...life. Research shows that, given a broad definition of sexual activity (including
kissing, caressing, and orogenital contact), SCI couples generally remain sexually active
to a degree that would likely surprise the general public: 96% of men in SCI couples
described themselves as involved in sexual activity (Phelps et al., 2001), suggesting that
most couples in cohabiting relationships reintegrate sex into their relationship over time.
It is more accurate, it would appear, to consider SCI to be a frequently overcome
impediment to a sexual life rather than an exclusionary factor.
Mobility and the Sense o f Masculinity
I cannot help but notice an interesting linkage in the stories of these men: it seems
that masculinity and mobility are very much in the minds of these SCI sufferers. In their
voices it seemed that the loss of physical ability to move represents one of the most
ignominious insults of their injury, as when Rose and Curt discuss life when they first
returned home:
Rose: So hes along all day in a house that he cant do anything in.
Interviewer: Thats frustrating.
Rose: Oh ya. I think that was probably the worst time, it was far worse
than the hospital time.
Curt: It was.
Rose: He was frustrated all the time. All he could do was lie around on the
couch, and read. That wore off pretty darn fast.... Basically, in the
morning we had to carry him down the stairs, park him in the downstairs
while the boys went off to school and I went off to work, and then in the
evening haul him back up the stairs, and it meant that my own son had to
be there.
Curt: It wasnt that so much, it was the initial frustration of...
Rose: He was cranky.
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I was amazed at Roses typification of Curts state as cranky. If I was in Curts

position I would not expect myself to be merely cranky under the circumstances
described: mortified, crushed, humiliated came to mind. I find it hard to believe that Curt
was no more than cranky at that time either. I looked over at Curt when Rose used the
word and there was no objection from him. Rose was minimizing, but in this case it
seemed to me that she was not minimizing his experience so much as telling him through
understatement that she accepted him even during that time.
No man would immediately be comfortable with being dependent on his own son
for mobility, and no man would want to feel that he has been parked. Carroll, Tempkin
and Worth (1985) suggested that it is the loss of a sense of autonomy that is the link
between male SCI and the sense of diminution of masculinity. Perhaps that is why Rick
Hansens Man in Motion (1985-1987) world wheelchair tour was such a watershed
moment in Canadian disability history. Rick Hansen was a man in a wheelchair, but he
showed the world that a man in a wheelchair could really move.
It has been observed that male concepts of masculinity are inexorably bound up in
their bodies. For instance, in a provocative article that examined the boundaries and
interpenetrations between gender, masculinity, and disability, Shakespeare (1999)
reported that the political and social experiences of disabled men have been adequately
reported but that the personal experience of masculinity after injury remains
underreported. He cited the work of Morris (1991, p. 93) who noted that the social
definition of masculinity is inextricably bound with a celebration of strength, of perfect
bodies. At the same time, to be masculine is not to be vulnerable. It is also linked to a
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celebration of youth and of taking bodily functions for granted. Shakespeare identified a
social contradiction between masculinity and disability that can enter the psyche of SCI
patients. Tepper (1997), in a first-person account of living with SCI, noted that traditional
social values surrounding masculinity are about competency and operationality. Fergus,
(2 0 0 2 ), in a grounded theory study of men with prostate cancer, made similar findings of
the self-perceived incompatibility of sexual problems, surgical disability, and internal
sense of masculinity. We can thus note that SCI brings the salience of body functions into
the central consciousness of men and their partners, and that amplification of awareness
may be part of a constellation of possible assaults on the sexual self-image of the patient
(Putzke, Richards, & DeVivo, 2001).
Parenting, Authority, and Sense o f the Male Self
Brad spoke to his feelings that it was much harder to metaphorically stand up to
his male children because he could not stand up to them physically. For men, there is
often a sense of rising to the challenge:
Interviewer: On an emotional level, is it tough to be the dad when youre
in the wheelchair?
Brad: It is tougher, definitely.
Interviewer: W hats the toughest part?
Brad: Getting them to respect your word even if youre in a wheelchair.
Its like theyll listen and obey their mum more. I think its because I cant
stand up to them.
Boys try their fathers; it may be how they test themselves. Animals rear on their hind legs
to look bigger and more fearful, to take space, to block the horizon out in front of a
challenger.
The potential disruption of parenting roles due to disability has been noted in the
literature. Graham (1989) suggested that instability in family dynamics that existed
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preinjury are magnified after injury. Carroll et al. (1985) suggested that the ideal for a
male role in contemporary families was dominant and aggressive both as a husband and
father, and that severe disability precludes acting in a way congruent with that ideal.
Woodbury and Redd (1987, p. 211) noted that children in a marriage raise another
whole set of social issues. An individual needs to relearn the role of parent.... The means
of discipline may need to be changed, and the whole role of authority in relation to
children may need to be re-examined." Interestingly, in a study of parenting styles in
spinal cord injured males (Rintala, Herson, & Hudler-Hull, 2000), it was found that they
did not vary in terms of warmth, structure or strictness compared to nondisabled parents,
suggesting that SCI males may adjust their parenting approach and compensate for
changes due to their injury.
I could not find a first-person account in the literature of the challenges of
childrearing for a disabled father. However, Hohmann (1981), a spinal cord injured
psychologist, reported that professional literature in the 1950s presumed, without
investigating, that disabled fathers would cause a whole constellation of neuroses in their
children, including hypochondriasis as the child identified with the injury of the parent,
confused gender roles because of the presumed passivity of the disabled male parent,
feelings of neglect due to the burden of caregiving placed on the uninjured parent, who
could not pay sufficient attention to the child. His own research (Hohmann & Buck, 1979
as cited in Hohmann, 1981) concluded there was little or no support for the speculations
about the negative effects of parental disability on children, nor justification for courts or
adoption agencies to deny the parental role to disabled people (p. 78).
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It may be that some parents are susceptible to the social prejudices that assume
that the very nature of disability produces inadequate childrearing. Standing over, shows
of size and its association with force. A man in a wheelchair might feel that he loses some
of that force, and sometimes possibly the sense of authority that goes with it.
Ironically, the capability for women to change their role and become a
breadwinner (if not the breadwinner) exists much more easily now, in this time when
families increasingly utilize two incomes. Robin stated how she never expected to be
thrust into the role of sole income producer, and she attributed the stress of this role
change, in part, to her remarkable weight gain of sixty pounds in one year.
All the men in this study expressed frustration at the indignity of lack of mobility.
It may be that this relationship to the body and masculinity is not through the form or
appearance of that body but through its action, the ability to get things done. As McColl
(2004, p. 366) noted, it may be that men continue to impose culturally derived
productivity expectations on themselves, and thus find the aging process harder. Spinal
cord injury is clearly a potent threat to that kind of operationality. Perhaps this explains
the obvious glee with which Curt described how he partially overcame his limitation by
rigging a primitive block and tackle that allowed him to escape his house.
It is this sense of lost operationality where mobility, masculinity, and sexuality
intersect for these injured men. The men, due to their SCI, are obliged to let their mate
set everything up, as Rose put it, from the physical standpoint. In other words, their
mates needed to position their men for sexual activity. For active males who identified so
strongly with their sexual spontaneity and impulsivity, this must be a blow. Yet, they
fight to maintain a sexual life in the face of this.
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The Isolated Nature o f Sexual Rehabilitation
These couples all described, to various degrees, the loneliness of the process of
sexual rehabilitation. Although sometimes the hospital surroundings were perhaps less
than optimal for the acute rehabilitation, they had professional guidance for the physical
and social rehabilitation; for the sexual rehabilitation, they felt like they were on their
own (although for one couple, their circumstances around the injury contributed to their
difficulty in utilizing the sexual health services offered). Also, the pool of couples in
similar situations seemed to shrink over time. Robin said, All the couples that, you
know, had injuries at the same time that Brad did. None of them stayed together. She
speculated that it could have been different:
Robin: And I wonder if at some point those relationships could have been
saved if they would have included the spouses a little bit more in that, you
know, because its all about education, right? If youre not comfortable
with the situation, and that just builds a wall between you.
Nonetheless, the timing of sexual health counselling remains an ongoing challenge. How
does one offer this support at a time or in a way that both partners can take it in? Also,
with the identified patient being the non-injured partner, how might professional health
educators and counsellors overcome the understandable tendency for all concerned to
focus almost entirely on the injured party? A paradigm shift to a systems perspective,
including the partner as a critical part of the rehabilitation landscape, would go a long
way to honour the lived experience of these couples.
Attachment and Intimacy
These couples, although all of them successful in staying together over decades of
married life (the marriages at time of writing ranged from 16 to 32 years) and major
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health challenges, show a variety of approaches to issues of honesty, disclosure, and what
constitutes, for them, the currency of intimate life. Robin talks about how the basis of
marriage is honesty, and sharing whereas Rose and Jen make it clear that their
respective mates dont not need to know everything (Roses words). Waring (1983,
1980) largely equated perception of marital intimacy with self-disclosure behaviors, but
some of this studys interviewees also rely on a degree of circumspection to maintain
marital harmony. Perhaps utter completeness of personal disclosure is not necessary or
desirable in some circumstances.
One female partner offered another element of intimacy: knowledge of the other,
but not necessarily through self-disclosure.
Robin: Even if theyre not going to be the primary caregiver for that
person, they still need to know because it makes the other person feel,
You know you really care about me, youre finding out all about whats
going on about me and the changes in me. Even though it was never said,
it was never verbalized between the two of us, but you need to know. And
then you can work on you later.
For Robin, she sees her desire to know of her loved ones condition to be an active
expression of intimacy, not in a narrowly sexual sense, but as being a gesture
communicating that she wants to be close.
Role Contamination and Preservation o f Eroticism
It is an inevitability that partners of SCI men become involved in the care of their
injured partner and at least some acceptance of this inevitability seems to be an element
in SCI couple satisfaction (Milligan & Neufeldt, 1998). Nonetheless, there may be lines
in the sand that some partners should cross only with caution. If a partner helps with
bladder and bowel care, for instance, it may promote some forms of intimacy (as Robin
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states above), but it could interfere with the redevelopment of sexual intimacy.
Involvement with the elimination care of a partner is clearly a turnoff at times, and as
Graham (1989) noted:
Loss of these functions is associated not only with inconvenience, but also
with humiliation, because children leam at an early age that bowel and
bladder control are important for social acceptance. Later in life, loss of
voluntary control over these functions reactivates feelings of shame
associated with poor sphincter control as a young child. Impairment of
sexual function is associated with loss of male or female identity, (p. 469)
All the uninjured partners were female, and one wonders if there is a subtle expectationindividual, dyadic, and social, that they be involved in that area of care regardless of
whether that partner is a nursey type (as Jen put it) or not. It is reasonable to expect that
partners would vary in their capacity to provide intimate care-giving and yet still preserve
their image of their mate as a sexual being. Some partners should perhaps not be involved
with some forms of care involving their mates genitals or bowels if they have significant
ambivalence around this. Nurses should be aware of the potential long-term sexual
consequences of partner overinvolvement in this area of their mates care, and open up
discussions about this accordingly.
Perhaps a practical compromise could be reached where partner assistance is
essential. Where available, temporary care for the injured partners genital care might be
arranged at times, to promote the reestablishment of some useful boundary: a kind of
sexual respite care, if you will. Also, promoting functional independence of the injured
partner around these activities may be very important for some couples. At the very least,
if partner involvement in this care is unavoidable, the nurse should work with couples to
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help them arrange some schedule that optimizes a sense of separation between these care
events and sexual activities.
Life With The New Pharmacology
The pharmaceutical industry is in the midst of developing new prosexual
medications, and marketing them with a ferocity perhaps never seen before for any type
of drug. In a brilliant collective epiphany, it appears that the pharmaceutical industry has
realized that medication-as-treatment is far too narrow a scope; the prosexual drugs are
instead marketed as medication-as-enhancement. These advertisements are readily
viewable to Canadian audiences. The patients portrayed in new television commercials
for erection enhancement are now relatively young and fit men. This marketing approach
no longer focuses on restoration or rehabilitation of function, but instead hints at super
function (Naughton, 2004). Some young men are also using these medications as an
antidote for the antisexual effect of recreational drugs (Kirkey, 2004). It is about always,
always being ready with an erection. No doubt, there will soon be reports of case studies
where patients take these medications on a continuous basis, although I am not aware of
any studies that investigate the effects of these drugs when used in this way.
In some respects, the casual use of PDES inhibitors is a somewhat new social
phenomenon. Both Tiefer (1998, 2001) and Kleinplatz (2001) warned about the
medicalization of sexual life. However, what seems to be happening is a demedicalization
that keeps the pharmacolization intact. It is the pharmacolization of everyday life, in a
sense, insidious-and wildly profitable for some companies (Naughton, 2004). The social
analogy here (although the physical danger may be less) is not the treatment with
selective serotonin reuptake inhibitors for simple unhappiness or the use of medications
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for rebellious behavior in children; the analogy, instead, is more akin to anabolic steroids
in sport, inasmuch as in most cases function is normal, while something beyond the
normal is sought. For some individuals, it is the search for super-function regardless of
the circumstances.
In the strictest sense, perhaps, these medications are, in and of themselves,
socially neutral; they represent a choice, and options are generally useful. This does not
change the ubiquitous tendency of people to turn options into obligations, to change
possibilities into expectations, to turn experiences into performances. This is not about
meeting an old standard, it is about formulating standards where none is needed,
establishing and promoting the standard; then, offering the magic pill so the standard can
be met. This is insidious, and it is not going to go away anytime soon, because it isthe
basis of consumer culture, turning wants into needs.
One couples approach to sex showed that they wanted to adapt on their own
terms. Rather than trying to produce some semblance of Curts lost sexual function, a
new type of sexual relationship evolved:
Interviewer: What about with any kind of enhancements? Have you
attempted, thought, considered, used any enhancements?
Curt: No. No. Well you know its kind of interesting. The doctor, my
doctor, sort of mentioned it to me once you know, the possibility of using
drugs or something else to artificially...
Interviewer: When was this, do you remember?
Curt: This was about...som etim e in the first year or so.
Interviewer: This was a family doctor?
Curt: [Nods]. But frankly I just couldnt see the point. So you get an
erection, big deal. Im not going to feel anything, so .. .Id rather do other
things that...that I can feel. [Rose laughs].
The recent revolution in oral erection enhancement agents has been precipitated
by the discovery and exploitation of the NO-cGMP-PDEs pathway. Although the effect
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on erection was discovered serendipitously during clinical trials of sildenafil as a
cardiotonic agent (Sildenafil, 2005), rationally produced successors such as vardenafil
and tadalafil all inhibit PDE 5 with purported greater specificity and duration, and slightly
different side effect profiles (Corbin, Beasley, Blount, & Francis, 2004; Padma-Nathan,
McMurray, Pullman, Whitaker, Saoud et al., 2001; Porst, Rosen, Padma-Nathan,
Goldstein, Guiliano et al., 2001). Prior to the PDE 5 inhibitors, erection enhancement
involved inhibiting venous outflow using vacuum pumps and restrictor rings (Denil et al.,
1996), intracavemosal injection (ICI) with combinations of vasoactive agents such as
phentolamine, papavarine and prostaglandin E] (Lottman, Hendriks, & Mueleman, 1998),
and surgical options such as implantation of penile prostheses (L. A. Levine & Dimitriou,
2000; Sipski, 1997) or surgery on penile outflow veins (Rivas, 1997). Most of these
treatments leave much to be desired, often being poorly effective, complicated, painful,
and expensive (Denil et al., 1996; Lehmann, Casella, Blochlinger, & Gasser, 1999). In
most clinical contexts, oral agents are now the first-line treatment irrespective of the
presumed organic cause of erectile difficulty, with ICI being the second-line treatment.
Curt, then, decided that there was no benefit in simply providing a hard penis for
the use of his wife if he was disconnected from his penis. Interestingly, it might be
possible to restore some measure of function for this couple-the goal of medical
rehabilitation-but without sensation, they felt the act would have no feeling.
Curt and Rose demonstrate that some couples may or may not be seeking a
pharmacological solution as an element of rehabilitation-unless, perhaps, the restoration
could be total, with sensation restored as well. As nurses, we to might be able to help
couples, both disabled and not, interpret the meaning of these sexual interactions in a way
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that maximizes sexual success-by helping them reexamine their very idea of success. As
Phelps (2001) noted, most SCI couples they surveyed did not rely on sexual intercourse
as their main sexual behavior. It may be that making this conceptual and behavioral shift
for SCI couples is a key part of the sexual rehabilitation process.
Sexual Role Evolution in the Couple Struggling With Disability
Spinal cord injury may impel couples to consider new behaviors and sexual roles
somewhat out of their own expected comfort zone. Robin, for instance, became sexually
assertive in a way that she likely never imagined:
Robin: And you have to take on different things, so like he was the most
aggressive, the most physical, throwing me around and all, now most of
the work comes from me. All the good stuff comes from here [points to
her head] but the work has to come from me.
Additionally, in the 14 months between the first and second research interviews,
this couple began to experiment with sex toys, much to their mutual surprise:
Brad: I think it was a matter of, the unfamiliarity with it and, maybe the
idea of having to resort to that, hadnt entered your mind, until somebody
explained the benefits and that everybodys doing it, everybodys using
something else, you know, especially this far in your relationship you have
to spice it up a bit. I guess we never looked at that part of it.
Robin: And I think it has a lot to do with the emotions [unintelligible]. If
my sister were to have done that [sold sex toys] last year, I probably still
would have had nothing to do with it, because I had to change my mindset.
And hes just trailing away the whole way. Whatever changes come along
hes good for.
Robin: As long as theyre positive, hes good to go, but again, I think if it
had happened a year ago, wouldnt have had anything to do with it?
Interviewer: How come?
Robin: Because I just, I wasnt ready to go that far.
Curt revisited the role of suitor after establishing the role of husband, and this
invigorated the erotic life of both of them. Jen and Rick, on the other hand, found
themselves stuck trying to recapture the previous sexual life (Rick: Well, I would like to
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m ake... Jens my partner, fulfil her in any one of her needs with a, without, you know, the
way it used to be; Id like to get it where it was. I know its gonna have to be different.)
Trying to return to normal, in the sexual sense, may seem the logical goal, but for a
positive outcome a new normal may be necessary.
Couples may lack the energy for the heavy sledding of sexual rehabilitation until
long after the physical and sexual elements have settled down:
Interviewer: Theres a period when they [SCI couples] are in the acute part
of the hospital recovery, some people are not interested in couples
counselling, or have no questions of sexual function, whereas others,
thats actually extremely important to them. So, for you, [to Rick] you had
some questions; [to Jen] you felt just kind of overwhelmed with the
situation, and the day to day, and afterwards...
Jen: I think the first thing is, youre in [hospital] and everything, and you
just worry about making sure youre going to live.
However, sexual problems so easily become deep-seated (Basson, 1996; Hawtin,
1982; McCarthy, 2001); as Irwin (2002) noted:
Sexual distress and anxieties that go unrecognized may lead to sexual and
interpersonal problems that in turn create further anxiety or distress. As a
consequence, a vicious circle of altered sexual self-concept, psychosexual
anxiety and distress, and alterations in sexual response and satisfaction,
can become quickly established, (p. vii)
Therefore, the potential consequences of no therapeutic intervention are problematic as
well. It would seem prudent to at least offer sexual counselling services to every SCI
patient or couple if to do nothing more at that time than to plant the seed that positive
possibilities might exist for the future.
Other-Centredness in The Sexual Evolution o f SCI Couples
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None of the male partners had retained any genital sensation after their SCI.
Genital pleasure in the way they had previously experienced it was not an option. How
can one enjoy sex without genital pleasure?
One strategy is to derive pleasure from the pleasure of the other, and this was a
direction taken by two of the men in this study.
Curt: Its probably been one of the most difficult parts I think of the whole
thing, I think, because many of the other aspects can be replaced. I cant
walk but I can get around in a wheelchair. But that, in the area of sexual
function, there just isnt really a replacement for that. Eventually,
gradually just...getting pleasure from giving pleasure, and satisfaction
from that.... What its come down to is that I get sort of my pleasure, my
satisfaction, out of what I can do for her. I mean, I ve heard of some
paraplegics who have had some mental imaginary orgasm or something,
and I think this just doesnt make sense. So, its just more of ... being
satisfied.
Interviewer: Satisfied that shes satisfied.
Curt: Thats what it comes down to. And get the pleasure of touching all
over.
Interviewer: And the intimacy is just as satisfying to you? The holding, the
cuddling, the...
Curt: Ya. Ultimately. Its still not quite the same, but with what I have...
Brad and Robin express it as well:
Interviewer: You think the most difficult thing about getting back to some
kind of intimate life will be?
Brad: I mean Im always ready; Ive just been waiting for her to come
around. Me, I dont always have to have pleasure. Im kind of a giver...
Interviewer: So giving pleasure for you is giving pleasure?
[Both] Ya.
Brad: Maybe its an ego, thing. I can still satisfy her, you know, but then
of course theres other ways of having sex, you want to try other ways. So
my ego, its nice to know you still have it.
Study interviewee Rick uses somewhat different language, talking about doing
my needs, but in a different way, and fulfilling her [his wifes] needs. Curt uses
somewhat similar language: It was really just the loss of the function, from my
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perspective, and I never...R oses satisfaction, and the thought that I could do it another
way. In these statements we hear tinges of a sense of loss mingled with a satisfaction
and pride at overcoming the obvious dysfunction. Naturally, the injured men care about
their loss, but they also care about the loss that their partner had experienced and are
willing to give pleasure even if the physical sensation is no longer there for them. All
these are indications that the men in these successful couples were very attentive to their
mates sexual welfare and pleasure. In some ways this has become a practical necessity
for them. Also, too, perhaps, it is a symbol of their ability to triumph.
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CHAPTER 9:
METHOD AND MEANING
The Systemic Worldview And The Way of SCI Couples
I approached the study of couples with a bias, bom of my clinical experience and
corroborative literature (Crowe & Ridley, 2000; Gehring, 2003; Sanders & Tomm, 1989;
Snarch, 1995) that systems theory presents a good explanatory model to describe the
experience of sexual relationships in couples. An overall assessment of the interview data
leads me to conclude that the journeys of these three couples show a complexity and
nonlinearity that is indeed better explained by systems theory than a simple model of
cause and effect. This means that there is an interventive waters edge that is mutable,
unpredictable, and beyond which a third party cannot pass without the implicit
permission of the couple. A caregiver can suggest and offer therapeutic options, but not
impose on them.
Interviewing for Care Versus Interviewing for Research
There is no question that the research interview has a very different flavour than
that of a clinical interview. Firstly, there can be a subtle shift from the gratitude balance:
in clinical interviewing, most couples are grateful for the interviewer who is trying to
help them. In a research interview, I have little concrete to offer in return. Nonetheless,
couples welcomed me into their home when they could have opted for another venue
(and then did so again when they reviewed the material with me). Brad and Robin opted
for a reinterview rather than simply providing permission to their previous interview. All
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of them spontaneously offered that I might contact them again if I needed more questions
answered. Also, at one point, Rick remarked, I thought it would just be more research,
but it was good. Interviews such as the kind employed in this study are not merely
elicitations of data on my part but are reciprocal; they are conversations (Gadamer,
1989). In conversations we are together; in the sense of the Oxford etymology we keep
company with (Allen, 1990, p. 252) with all the mutuality that implies.
Research Interviews: Talking About Sex Can Be Sexy
The third couple interviewed, Brad and Robin, had been interviewed 14 months
earlier (outside their home) by me for a qualitative educational research project on sexual
health. When they agreed to be interviewed for this study, it provided an opportunity to
explore their experience of the initial interview.
This couples sexual activity had gradually declined over the years so that they
were sexual only about once a year. This was the source of some tension between them.
When they were first married, it was every day, and in Robins opinion, this was the
unrealistic standard to which Brad compared their current sex life. Brads explanation
was, You never forget the way you were. Whether his recollection is accurate or a
mourning for a past that was never quite that way, it is the perception that powers his
feelings of loss and ongoing deprivation.
This withering of the sex life likely had complex roots for them. The reduction in
mobility due to Brads SCI meant that it became much more difficult for Brad to initiate
sex the way he had before: (Brad: I was so passionate before I got hurt. I was quite the
aggressor: so I pick her up, carry her to the bedroom.). However, factors unrelated to
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Brads injury seemed more at play. These factors include the familiarity and habit that
time brings: (Brad [speculating about Robin]: Maybe because w ed been together for so
long. You sort of grow accustomed; youre sort of immune to each other after awhile.)
Also, Robins general sense of self-esteem inhibited her interest: (Robin: I looked at it
very negatively because of the self-worth I had for myself.) Additionally, Brads recent
long bout of depression and the everyday work demands of their lives were voiced by
them as elements in their sexual decline.
The unexpected experience last year of undergoing an interview for sexual health
put their sexual lives in motion again:
Interviewer: Im just wondering if you can cast your mind back to the
interview we had previously, and think about what was the effect of that
interview?
Brad: Ya, I think so. Soon as we were finished and in the parking lot, we
made!
Robin: We did not. [Brad laughs]
Robin: No, most definitely. We certainly talked about it: it raised some
issues. It kind of opened Pandoras box.
Robin: It did.
Brad: It made us more aware of the situation, and so it was a little bit
helpful, definitely. Last time we spoke [during the first research
interview], it probably had a honeymoon effect, probably: it was an issue
again; it was brought to the open again.
According to Robin, their sexual activity had increased from once yearly to once every
three weeks, but even for Brad, chronically dissatisfied with the amount of sex, there
seemed to be more discussion and awareness of sexuality in their marriage since the
interview. For this couple, then, their sexual health research interview stirred the pot and
reestablished discussion about their largely dormant intimate life.
As Stevenson, et al. (1983, p. 800) noted: nonjudgemental acceptance of the
patients problems, education, support and reassurance can all be key factors in the
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alleviation or even prevention of sexual distress. Interestingly, this couple appeared to
experience a beneficial effect even in the absence of the education, support and
reassurance usually present in clinical interviews (Annon, 1976).
One wonders if the effect noted in this one couple is possible in any research
situation that lacks personal interaction, such as questionnaires and surveys. Is answering
a sexual survey a sexual act for some respondents? Likely. As Morokoff (1986)
speculated, laboratory studies about sexuality may represent a sexual experience on some
level for some participants.
Fujita (1971) followed up on the effect of a sexuality questionnaire on
undergraduate students. They administered a follow-up questionnaire that sought to
identify attitude and behaviors changes that might follow the original questionnaire. He
concluded that the effect of the original interview on sexual behavior and attitudes was
negligible, but that in those persons who identified an attitude change, the effect of the
interview was primarily to make them more reflective about sexual matters generally. In
contrast, our couple found themselves much more sexually active. Perhaps an extended
interview can have a different effect than a questionnaire; perhaps the couple context for
the interview can produce a synergistic effect.
The semi-structured interview method used in this study provides both structure
and flexibility. This structure likely affects the couples long afterwards. Sometimes the
couples report had the flavour of a well-thought-out response; at other times, they
seemed to be generating ideas, connections, recollections that they had never been aware
of before. It can be imagined that these new connections would themselves become part
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of the reflexive process of these couples, a process similarly experienced by the
researcher (Gadamer, 1989).
In some ways we should not be surprised. Sexuality pervades our culture, as
advertisers have well noted (Gould, 2003; Reichert & Lambiase, 2003). In the presence
of loving and caring, it may not take much to activate a sleeping sexual life but mutual,
positive attention directed towards the idea. My interview may have played that part, not
through efficient causation, but as one element that tipped some internal relational
balance, a perturbation of the system (Bateson, 1972).
Conjoint and Individual Interview Format
I worked to normalize the mixed conjoint/individual interview format. Although
the couples had all individually consented to this format prior to the interview day, it
seemed important to communicate that the individual interviews were a commonplace
feature of sexual interviewing. There was no obvious resistance to this format, and
sometimes the interviewees seemed to express an intuitive understanding of the potential
value:
Interviewer: Ive been telling Curt, in clinical sexual health interviews,
what you do is interview the people together, then separately. And that
doesnt appear anywhere in the research literature. That has amazed me,
but there it is. So, I thought I would test this format, so to speak, see if this
gleaned anything useful. The reason they do it in sexual health
interviewing is that sex is almost always a delicate subject for couples.
Rose: Well, yes. Theres a certain amount of role-playing going, whatever,
takes place. Sometimes you dont always want the other person to know.
Interviewer: Thats right. And the motivation I find is actually that - what
would you think the motivation would be for that?
Rose: Just for that reason. For what turns one person on, the other person
doesnt necessarily need to know that. [Laughs].
Another couple concurs:
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Rick: You know I dont want to hear the truth sometimes, and I think she
holds back sometimes, and maybe thats good, thats her way of doing it.
Jen: Rick is right, and I have told him this, theres a lot of things I dont
want to say because I dont want to hurt him.
The mixed model of combined conjoint and individual interviews would appear to
be a valuable approach to research interviewing in this area. I encountered no hesitation
from the interviewees. Interestingly, the men seemed almost eager to have their wives
speak privately to me. Without being blatant about it, the men seemed to sense that their
wives were holding something back during the conjoint interview, things that were
bothering them or had bothered them, things that the wives were hesitant to discuss with
the men present:
Brad: Ya! I didnt have much more to add.
Robin: Oh man, I had a lot!
Rose: Thats right. Im not one of these people who believe in total
honesty with everything [laughs]. I think relationships function much
better if certain things are kept to oneself.
They were right. These were loving couples, but some painful things perhaps do
not always require expression to the partner, though they may find their voice with a
party somewhat removed from the relationship: a friend, a clinician, a researcher. The
opportunity to speak the difficult things seemed to be appreciated by both members of the
dyad. I believe this demonstrates a certain trust on the part of each other. The men know
their wives have suffered and perhaps intuit that that suffering is neither so obvious nor
easy to voice. Overall, this widely employed clinical technique, so neglected in the
research literature, may have the potential to uncover important differences in shades of
meaning between members of a couple.
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CHAPTER 10:
ETHICS AND INTEGRITY OF THE COUPLES JOURNEY
In order to provide a sense of the lives of these couples, it seemed necessary to
present their stories with a certain degree of detail. However, that detail was sometimes
so specific that it might have rendered the couples identifiable. Considerable discussion
with my Thesis Committee yielded several options:
1. Leave the biographical details as is to maintain integrity
2. Remove any identifiable material regardless of its research value
3. Make changes that try to preserve the flavour of the couples report
The risk of outing the interviewees arose if the first option was taken. Through
the informed consent (see Appendix C) the couples were aware that they might recognize
themselves if they were to read published portions of this study; however, it is a different
matter if others were able to identify them.
The second option, removing all material that contained biographic details, might
have been a bit extreme. The events in these couples lives were woven in with their
experience of these lives, and the exclusion of all material containing identifiable
material might impoverish the stories offered by these couples.
The third option, making changes to biographical details, represented a middle
way, but might not adequately address both integrity and identifiability. What to do?
Ultimately it was decided to take quotations and interpretations included in the
thesis back to the interviewees. They were asked to review the material and judge for
themselves if the material was identifiable, and if they were comfortable with the level of
detail of description contained therein. If they were comfortable with the material as is,
110
they were asked to read and sign a letter of understanding (see Appendix E), confirming
their continuing willingness to participate.
All interviewees agreed to meet again, and all expressed an understanding of the
stated terms of reference of the meeting. Each couple was given a copy of all the direct
quotations from their transcript which were used in the current draft of the thesis, along
with some interpretive sections: essentially, all their descriptive passages used in the
Interpretive Descriptions section (see Chapter 7), plus the material referring to them in
the Interpretive Analysis section (see Chapter 8). During the meeting, I reiterated the
purpose of our getting together again, and also asked them if there was anything they
wished to clarify or enlarge upon as a result of their previous interview.
All interviewees expressed comfort with the material presented as is. One
uninjured partner wondered if her husband might be identifiable, but the injured partner
was unconcerned and deferred to the wishes of the partner, who then decided she was not
concerned. No other couples expressed concerns. One interviewee wondered if he had
been quoted correctly, though when I asked him to direct me to the passages in question,
he said it was nothing important and told me to forget it. One interviewee said that the
material captured us very well and that the entire process was conducted very
professionally. I thought it was just going to be more research but it was good. Another
noted that the material presented was more reader friendly than other research she had
read on the subject.
Interestingly, none of the couples were interested in enlarging on their original
interview in an informal (unrecorded) way. Two of the three couples spontaneously
Ill
remarked that they would be happy to be reinterviewed for any additional research. All of
them expressed interest in receiving an electronic copy of the thesis when completed.
Some observations are perhaps in order here. This was the first time that couples
had access to the private utterances of their mates that came from the individual
interviews, so there was some potential for friction. If friction occurred, it was not
expressed or evident. Also, the couples remained very deferential to each other regarding
the material, and made sure that each other were in fact comfortable with it. This was an
echo of their original interview, and demonstrated a mutual caring sometimes sorely
missing from clinical interviews of couples in relational crisis. Maybe these secure
couples overall supported the research, and a slightly elevated degree of exposure was a
small risk for the potential benefit of the research itself. At any rate, the use of the
material was a decision best for the couples themselves to make.
My final observations are some self-reflective ones. My concerns about
interviewee identifiability seemed greater than those of my interviewees. This, and the
fact that my hermeneutic interpretations extended far beyond mere reportage meant that I
was fully prepared for couples to express discomfort with the material presented. I could
not parse out whether the material they reviewed was in their opinion identifiable but not
significant enough to warrant concern, or not identifiable. The interviewers all seemed
content to say it was fine and move on to a conversation of their current lives, and
perhaps there is a hint here: many of the potentially identifiable events discussed were in
the distant past. These couples had moved on, and perhaps both the emotional valence
and potential sense of exposure of these details had long diminished a bit in intensity.
112
Maybe their own personal histories had more of a sense of recency with me than for
them.
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CHAPTER 11:
CONCLUSIONS
Clinical Significance: Sexuality and Spinal Cord Injury with Couples
Sexuality had remained both an issue and an activity for all three couples
interviewed. In two couples it is a recurring element of tension, though evidently not to a
degree that was fatal for the relationship. Even if the couples were somewhat sexually
inactive, and even when desire could not be easily found, these couples cared about the
role of sexuality in their lives. Even if couples do not act on it daily, sexuality was an
activity of daily living.
All of the couples sexual relationships have changed in some ways, sometimes
quite substantially. It is ultimately impossible to disentangle the changes related to the
SCI compared to those that reflect common changes brought about by time (McCarthy,
2001), but SCI and other disabilities appears to accelerate these changes.
The Spinal Cord Injured Male
Spinal cord injury can cause a complete cessation of physiological sexual function
in males. This loss can interfere with their motivation to engage in sexual activity,
general and sexual self-esteem, and their confidence and sense of masculinity. To re
establish a sexual life, they may find themselves obliged to change their habitual role,
such as that of primarily sexual aggressor, or their rhythm, such as intense and hurried. In
other words, spinal cord injured males may need to accept a behavioral mutuality and a
certain amount of power sharing around sexual activity (Badeau, 1995).
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Some injured men may not be invested in medical treatment for sexual problems
and yet feel positive about their sex life. This appears to require, on their part, a
psychological shift away from performance to a philosophy of pleasure and closeness.
They also seem to benefit from broadening their notion of sexuality to include elements
of courtship, set and setting, and sensuality.
One element in the problematic nature of the acute rehabilitation phase may have
been identified by Byfield et al. (1999). They found that, despite the availability of
comprehensive sexuality education within their study group, male SCI patients often had
little understanding of the extent of the sexual bodily changes they were facing. They
underestimated the potential impact of these and other changes on their relationship, but
nonetheless expressed little concern about discussing these changes with their partner.
Overall, Byfield, et al. suggested that SCI patients confidence about these matters
significantly outstripped their actual knowledge about them. This may demonstrate the
use of denial in the face of overwhelming disability events (Feigin, 1994), or a positivity
that represents a form of existential growth (Sodergren, Hyland, Crawford, & Partridge,
2004). Regardless of the possibly adaptive function of this misplaced confidence in SCI
men, the long-term consequences for the couples might manifest as an information
deficit, unrealistic expectations of sexual function, and the potential for sexual
misunderstanding with their mate.
For nurses, this means that the role of educating the uninjured partner must not
fall to the injured partner. Given the well-document difficulty that nurses have in
discussing sexuality with patients (Guthrie, 1999; Kendall et al., 2003), the temptation to
allow education of the sexual aspects of the injury to default to the patient is high
115
(Guthrie, 1999). Perhaps the relative lack of discussion of sexuality experienced by some
of these couples in their acute rehabilitation reflects this difficulty.
Clearly, education on the sexual and relational consequences of SCI needs to be
part of the overall rehabilitation process, and treated with the same importance accorded
to other rehabilitation topics such as mobility aids, bladder and bowel care, and skin ulcer
avoidance.
The Uninjured Partner
The uninjured partner (in this study female) undergoes a transformation due to the
mates injury. This transformation is often undertaken with a minimum of professional
support, and little general acknowledgement of its difficulty. Additionally, friends and
clinicians may express some rather unhelpful sentiments about the relational
consequences of the SCI, such as when Rick and Jen were told that the chances of staying
together after SCI were low. Professional caregivers must resist the urge to make casual
negative predictions about the future of couples relationships, and rehabilitation workers
need to understand that SCI does not signal the end of a committed relationship.
Uninjured partners are almost always thrust into the role of caregiver, often
somewhat against their will, and frequently counter to their personal style. For some of
them this interferes to a certain extent with erotic interest. The uninjured mate may grieve
the loss or changes to the sexual life for a very long time, but it may be the reduction or
absence of an overall sexual atmosphere in the relationship, not the loss of physiological
functioning in the injured partner that is the main perceived loss for them. Similarly, Prior
(2000) noted that type, level or severity of SCI did not predict overall spousal marital
satisfaction.
116
The uninjured partners image of their partner as a vital, attractive sexual other
may be preserved after the injury despite substantial physical changes to that partner
(Neumann, 1979), as when Rose talks with admiration about the physical gifts of her
husband in the present tense, long after the injury. Notwithstanding, it may be very hard
for the injured to believe this. It would be worthwhile clinically for nurses to explore this
in the acute phase of injury before inaccurate perceptions of he other become ingrained
assumptions. The difficulty, as Rick and Jen noted, is that couples may (understandably)
place their relationships and sexuality well down on their list of priorities at that time. Jen
suggested, I think it would be better.. .if you could live your life a little bit, and then you
could go back. For this couple, perhaps an early introduction to sexual health services in
the acute phase coupled with a nurse-initiated follow-up call or appointment would have
been optimal. Sandowski (1993), writing as a social worker, noted that that many marital
problems do not surface until after the couple returns home, and that follow-up visits by a
social worker may offer an ideal time for couples to discuss any developing sexual
concerns.
From a clinical application standpoint, the uninjured partner represents a
counselling challenge. The rehabilitation of the injured partner naturally focuses on that
persons many and serious needs. There is an inevitable immediate shift of responsibility
to the uninjured partner in terms of childrearing, finances, and housekeeping (Rohrer,
2001). Faced with the fresh tragedy of the mates injury in the acute phase, the uninjured
partner suffers (Jen talked about her sense of being overwhelmed with the implications of
her husbands injury and how being with horses was a healing process for me). Sadly,
it is hard for the uninjured partner to find a voice for sufferings that might not seem
117
selfish or ungrateful for the survival of their partner. Robins statement that the uninjured
partner can work on [her] self later may be one perspective, but systemic clinical care
requires that nurses remind the uninjured partner to ultimately visit that later, at some
time and in some way. It is a counselling challenge to help the uninjured partner
acknowledge that suffering and provide education that will allow the partner to
understand the physical sexual changes and anticipate the broader sexual and relational
implications of the injury. The irony is that perhaps the first opportunity to offer sexual
rehabilitation services may ultimately turn out to be the last opportunity, and this window
occurs at one of the worst times for the uninjured partner, when there are far more
immediate perceived needs.
There may be some solutions to this problem. First, it will be more productive for
nurses to conceptualize the unit of care in SCI couples as the couple itself (Anderson &
Tomlinson, 1992). It is the couple that goes through SCI, not the injured one and their
mate. It is understandable that partners will feel at loose ends during the very acute phase
when treatment of their mate is so highly technical, but as rehabilitation progresses and
involves increasingly long-term solutions, involvement of the mate is increasingly
critical. Nurses need to engage the partner as fully as the patient as time progresses
(McNeff, 1997).
It is important for nurses to educate uninjured partners about the profound extent
of changes that will come as a result of the injury, not just from the practical standpoint
of shifting workload, but also about the emotional strains that will accompany these
practical reorganizations (Esmail et al., 2002). Sexuality needs to be woven into these
discussions without waiting for the spouse to bring the subject up. Scheduled follow-up
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appointments for the patient should incorporate the partner, and an opportunity for that
partner to have some private time for frank discussion with a professional would be
valuable. Not all couples that go through SCI are as strongly bonded as the three couples
interviewed for this study, and long-term sexual and relational problems might be averted
by systemic intervention as the rehabilitation process unfolds.
The Couple
Couples experience an enormous disruption in their entire lives as a result of SCI,
and this disruption affects habitual activity patterns for many years after the physical and
social rehabilitation is complete (Yim, Lee, Yoon, Song, Rah et al., 1998). Early interest
in sexual rehabilitation may be trumped by common demands of life at the time, but
eventually interest and concerns about the sexual realm will almost inevitably return.
Lack of expressed interest early in the process may reflect this understandable
preoccupation rather than a lack of interest or need in sexual health education and
counselling.
The return to a mutually satisfying sex life may be delayed for years after physical
rehabilitation has concluded. These couples have shown that instability or disappointment
in this area does not have to represent a fatal flaw in a marriage if the union is otherwise
strong. Nurses need to communicate that adjusting to these profound changes takes time,
sometimes much longer than adapting to physical changes and other psychosocial
disruptions.
Couples adapt sexually and relationally to SCI in ways that incorporate the
specific strengths and weaknesses, proclivities and hopes of its members. This seems
particularly true in a sexual context, but it is impossible to define a line. Each couple
119
needs to constantly negotiate the boundaries between them and reexamine their
boundaries, sensitivities and sexual ambitions. They may come to some sexual solutions
that were not in their expected sexual repertoire (Rolland, 1994), as Brad and Robin did
in their new use of sexual toys, and Robins sexual assertiveness. Nurses need to
communicate that sexual solutions that may work with some couples may not be
workable for other couples. Some of the sexual choices by these rehabilitating couples
may be foreign to the nursing staff, or even unpalatable to the individual nurse. It is
important for staff to keep in mind that it is the couple that has to ultimately live with
these sexual choices, not the nurse.
Spinal cord injury did not produce an appreciable shift in the power relationship
within couples, at least in these individuals. Habitual roles were renegotiated, but the
solid bond of affection within these marriages appeared to minimize power struggles
between them. In Robins case, she developed a strength and standing in the world, and
an assertiveness in the bedroom, that she never imagined she would seek or acquire. It
appears that secure relationships can demonstrate the ability to buffer the disruption of
even massive change (Pryor, 2000) and also provide opportunities for personal growth.
Nurses need to be able to communicate that these transitions are possible for couples.
Some further clinical implications arise from this research regarding the
particulars of sexual rehabilitation and the role of the nurse. It appears that an over
reliance on restoration of sexual physiological functioning can in some cases prevent
sexual rehabilitation from reaching some new resolution (Ironside, 2003). While
medications may be part of sexual rehabilitation, they are not the beginning and end of
care (Hart & Wellings, 2002; Kleinplatz, 2003). Also, nurses cannot assume that sexual
120
medications are unproblematic from a relationship standpoint (Potts, Gavey, Grace, &
Vares, 2003; Potts, Grace, Gavey, & Vares, 2004). It is important for nurses to know that
a pharmacological fix may improve physiological functioning without producing much
positive impact in a couples sexual life as the couple experience it. As a corollary,
restoration of sexual function is not a prerequisite to a satisfying sex life, especially if
couples recognize that sexuality can involve a whole constellation of ideas and events.
Concepts of intimacy vary from couple to couple. Some couples identify open
communication as a key element, whereas others feel that establishing some
communicational boundaries, and leaving some things unsaid, helps preserve relationship
and sexual harmony (Risen, 2003). There is a distinction between dishonesty and
diplomacy that some SCI couples may recognize. Nurses need to be aware that
advocating a policy of absolute disclosure of every thought and sentiment may be
counterproductive in some instances and for some couples. Obviously, there is no sharp
line of demarcation here, although Risens (2003) distinction between what is private and
what is secret (see Chapter 4) forms a reasonable basis for helping couples sort these
issues out.
Certainly, sexual issues in a relationship are shared issues whether they are
discussed or not. Both the shared story and the personal story are constantly at play with
each other. There is immense value, from a clinical perspective, of bringing forth both of
these forms of stories, and the interaction between them. As McNeff (1997) noted,
If the disability or illness is the exclusive domain of the patient, it will
skew a couples relationship.... Optimal functioning relies on the
willingness of both partners to challenge stereotypical assumptions of the
patient as the diseased model. If partners view the disability as a
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conjoined issue, they are more likely to feel empowered by their
circumstances, (p. 597)
My recommended therapeutic strategy, then, is not to isolate one member of the couple
by isolating the functioning problems, but instead to frame problems as shared problems
with shared solutions (Woody, 1992). Those problems that cannot be solved can be
grieved together-or possibly redefined by mutual agreement. Nurses can help couples
navigate these waters.
Research and the Systemic Approach
A systemic approach emerged from the interviews, though mostly in indirect
ways. Systemic interaction is less demonstrable with transcripts than if I had videotaped
the interviews and analyzed the tapes, partly because video records show more of the
physical interaction with the couples. On a transcript, only one voice at a time is
preserved. Nuance is lost from conversation after transcription, and even listening to the
audiotapes cannot fully recapture my recollection of the pregnancy of those
conversations. The ebb and flow of engagement between myself and the couples or
individuals, and between each other, is part of what makes the systemic quality of these
interactions so much more evident in person than in the reading of the transcripts.
I think that the systemic flavour of the interviews was also muted somewhat by
the interview situation. In a clinical context, the strongly interactional quality of groups
seems to assert itself most obviously at points of great conflict or other poignancies. That
is, the implicit lines of communication, particularly the nonverbal ones, have seemed to
me most evident at during discussion of some present serious problem or stressor. This
kind of clinical urgency and intensity was only reached intermittently in the research
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interviews. Perhaps this is because their sexual and relationship situations were somewhat
more stabilized than couples in crisis. Overall, then, these research interviews were less
hot and affect-laden than I generally have experienced in clinical interviews.
Questions That Remain To Be Answered
This study uses exclusively heterosexual couples in which the male becomes
injured within a committed relationship. Does the same pattern hold for couples in which
the female receives the SCI? How do female SCI couples cope sexually than when the
female is injured? Tepper et al. (2001) noted that the conventional clinical wisdom was
that sexual coping is easier for a couple with an injured female partner, although their
work challenged that assumption. What is the experience of those couples, and how
might they best be counselled? Specifically also, what is the experience of the uninjured
male partner, and how might it be contrasted to that of the uninjured female partner in
this present study? There are potential challenges in terms of recruitment since female
SCI is relatively rarer than male SCI and tend to experience SCI later in life than men
(DeVivo, 1997); this may affect their marital status. Pentland et al. (2002) noted that the
sexual coping experiences of male spinal cord injured patients cannot be generalized
wholesale to females with SCI; similarly, we cannot generalize the experience of female
uninjured partners to those of their male counterparts. Experiences of uninjured male
partners in SCI are largely unexplored (M. Tepper, personal communication, 11 July,
2005).
Another substantial unanswered question involves the readiness of SCI patients
and couples for sexual health interventions. The couples in this present study gave
123
different and individual accounts of their needs for sexual health education and
counselling. In clinical settings, readiness of patients to deal with the inevitable sexual
consequences of SCI is an ongoing difficulty, even when specialised sexual health
services are available (Breen & Rines, 1996). Byfield et al. (1999), in their study of SCI
inpatients, attributed the relatively low interest placed by patients on sexual health
concerns to an unrealistically optimistic appraisal of future sexual function and
consequent belief that the relationship would remain relatively unchanged. This finding is
striking, and merits further investigation, perhaps best through qualitative methods. It
would be useful to researchers and clinicians to chart the history of changing perceptions
of SCI couples over time.
Challenges and Choices for the Future
It is a propitious time to be a nurse in sexual health care right now: propitious and
treacherous as well. In the past few decades, we have the convergence of two different
approaches in sexual rehabilitation. One stream is a developing range of physical
therapies such as new medications and new rehabilitation strategies. Moreover, the
personal tragedies and subsequent efforts of such individuals such as Rick Hansen and
Christopher Reeves have liberated new dollars in North American research (Christopher
Reeve Paralysis Foundation, 2001; Rick Hansen Man In Motion Foundation, 2005).
Exciting new discoveries in the area of neuroplasticity (Grasso, Ivanenko, Zago,
Molinari, Scivoletto et al., 2004; Iseda, Nishio, Kawaguchi, Yamamoto, Wakisaka et al.,
2004; D. G. Jones, Anderson, & Galvin, 2003; Matinyan, 2004), as well as improved
protocols to preserve function through interventions in the acute phase show promise.
124
On the other hand, it is unclear if society has made any progress in seeing the
disabled as sexual beings (Pitzele, 1995). This represents an ongoing educational
challenge for both nurses and couples, since all of us share this culture to some extent.
Nurses can have a role in pointing out some of the inequalities that exist in the broader
society with regards to sexuality and disability. It is an ongoing process.
Effectively addressing the sexual health concerns of SCI couples is an ongoing
task. Our wisdom as nurses and other health-care professionals in helping patients adapt
to their situation and transition to a state of health within their disability can go a long
way to addressing some of those concerns.
Epigraph
This study represents a culmination of the efforts of many people. Prominent
among those are the couples that shared their stories, including their disappointments,
grieving, and mistakes. I hope that they have put a face on the very human process of
aging as a couple, living and often thriving with a major disability. I am inspired by the
tenaciousness of these couples in believing in each other, even at times when individual
members could not believe in themselves. In a world where love sometimes comes and
goes so easily, these couples are truly exceptional.
125
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APPENDIX A:
RECRUITMENT POSTER
Volunteers Wanted - Couples to Interview
Researchers at the University of Calgary, Faculty of Nursing, are studying how couples
negotiate the sexual and relationship changes after spinal cord injury (SCI). Many studies
have looked at the physical problems caused by SCI. Not as many studies have looked at
the effect of SCI on couples relationships, and most of these have involved
questionnaires. Also, very few studies pay attention to the effect of SCI on the partner
who was not injured. Our experience is that each couple reacts differently to injury in one
partner. How do couples stay together? How do they adjust their romantic and sexual
activity to the new realities of their life? Also, what should health-care workers be doing
to help couples through this tough coping period? We are hoping to interview
heterosexual couples, preferably in their home, or at the University. The interviews will
be PRIVATE and the identities of the participants will be kept ANONYMOUS and
protected. The interview will take about hour. If you are:
-a man with a spinal cord injury or married to one
- married/living together BEFORE and AFTER the injury
-at least 2 years post-injury
-BOTH PARTNERS are comfortable talking about relationships and sex
We would appreciate hearing from you! Please contact the number below. The researcher
will telephone you. Or, use this email: brbeemer@ucalgary.ca
Principal Researcher: Lori Houger-Limacher RN PhD, Assistant Professor, Faculty of
Nursing, University of Calgary
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Researcher: Blaine Beemer BSc RN CPMHN(C), MN Student, University of Calgary
Thank You for your time!
Study
Study
Study
Study
Study
Study
541-1026
541-1026
541-1026
541-1026
541-1026
541-102
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APPENDIX B:
SAMPLE INTERVIEW QUESTIONS
C O N JO IN T
IN TRO D U C TIO N : How did you meet, and what was the courtship like?
Year of accident? Time in hospital? Any complications/impact
What were the reactions of family members to the accident?
Any kids? Bom before or after accident?
Any break-ups? What was your dating history like before meeting each other?
IN JU RY : Could you tell me about the accident?
What was it like for you as a partner? What were your biggest worries generally after the
accident? What were your biggest worries in terms of your relationship?
Did the injury change your outlook on life?
Had either of you had any experience with spinal cord injury before? With other serious
illness or injury in the family?
CARE: Did you receive any counselling at any time around the accident?
Any couples counselling? Any sexual counselling?
Were sexual issues of any concern for you around the time of the injury?
If you had concerns, what would have helped you to voice it?
What kind of post-injury relationship and sexual counselling services should be in place,
if any?
What might have helped you cope better as a couple during that time?
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RELATIONSHIP
What is the thing as a couple that feels like the biggest loss? W hat is the thing that stayed
the same that most surprises you? Did you ever discuss breaking up? If so, what stopped
you?
If someone asked you what was the most difficult thing for your partner, what would it
be? Was there any change in power in relationship? Any changes in terms of jealousy or
sense of security in the relationship? How did you work it out?
SEX: How long after the injury was it before you started thinking of sex?
When did you first try to have sex? What was it like?
What is the biggest change you have noticed?
What do you most miss? How do you manage?
What about erection and ejaculation?
Have you tried any medications, and if so did it help?
Do you think about sex differently now?
Do you have a type? Where do you think you got your type - your parents? Peers?
END: Anything I didnt ask that I should?
What do you think other couples should know about this process?
What else should I be asking people?
Do you have any friends who fit the study and might want to talk to me? Could you
contact them and ask them if it is okay if I contact them?
UNIVERSITY OF
CALGARY
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FACULTY O F N U R S IN G
APPENDIX C: INFORMED CONSENT
CONSENT TO PARTICIPATE IN RESEARCH
T IT L E : Sexual Health, Relationships and Spinal Cord Injury: The Experience of

Cohabiting Couples
INVESTIGATORS:
Lori Limacher RN PhD

Blaine Beemer BSc RN MN Student
This consent form is only part of the process of informed consent. It should give
you the basic idea of what the research is about and what your participation will involve.
If you would like more detail about something mentioned here, or information not
included here, please ask. Take the time to read this carefully and to understand any
accompanying information. You will receive a copy of this form.
BACKGROUND
Many studies have looked at the physical problems caused by spinal cord injury
(SCI). Not as many studies have looked at the effect of SCI on couples relationships, and
most of these have involved questionnaires. Also, very few studies pay attention to the
effect of SCI on the partner who was not injured. Our experience is that each couple
reacts differently to injury in one partner. How do couples stay together? How do they
162
adjust their romantic and sexual activity to the new realities of their life? Also, what
should health-care workers be doing to help couples through this tough coping period?
We will be interviewing a small group of couples (three to five) to understand their
experience.
During the interview you will be interviewed together, then separately, then
together again (this should take about one hour total). The interviews will be taperecorded and then transcribed. The interviewer will take a few notes during the
interviews.
W HAT IS TH E PU R PO SE O F TH E STUDY?
The purpose of this study is to find out from couples how their sexual life and
relationship changes after SCI. We also want to know if there is any help that health-care
workers provided or could have provided to make these changes easier.
W H AT W OULD I HAVE TO DO?
We want to interview you in your own home. If it is not possible to interview you in your
home, a private and wheelchair-accessible room will be found in the Faculty of Nursing,
University of Calgary. The conversation will be audiotaped and later transcribed by the
interviewer; the interviewer may also take brief notes as well during the interview. What
is said to us (the researcher) during the individual interview will be kept confidential in
the couple interview.
The interviewer may ask a few specific questions, but we want couples to be free to tell
us what they think is important, and what questions we should be asking. We figure that
you are the expert about how you are getting through, or got through, these health
163
challenges! After the interview, you may also use this email address:
brbeemer@ucalgary.ca to share any ideas that might occur to you. These emails will be
treated as private like the interviews.
WHAT ARE THE RISKS?

Sometimes people may feel uncomfortable while discussing some of these
personal matters. If this happens, you can change the subject yourself, ask the interviewer
to change the subject, or stop the interview at any time. Also, because the number of
couples interviewed will be small, you may recognize your own statements or quotations
in published material, although details will be changed or removed to protect your
privacy.
WILL I BENEFIT IF I TAKE PART?

If you agree to participate in this study there may or may not be a direct health
benefit to you. The information we get from this study may help us to provide better
treatments in the future for patients with SCI. If treatment problems are identified through
the interviewers, the researcher will try to find resources in the community to help you
after the study, but these specialized services sometimes do not exist in some regions. A
list of general counselling resources will be provided to you that you can use if you
choose (you may continue in the study even if you are in counselling - and you choose to
tell us if you are in counselling or not).
DO I HAVE TO PARTICIPATE?
164
Participation in this study is voluntary. You may stop at any time without creating any
problem with any other treatment you might be taking, or jeopardizing any relationship
with any caregivers you may have.
WILL I BE PAID FOR PARTICIPATING. OR DO I HAVE TO PAY FOR

ANYTHING?
There is no payment to participate in this study. If you choose to be interviewed at the
University, we can arrange free parking for you.
WILL MY RECORDS BE KEPT PRIVATE?

Yes. You will be assigned a different name on the typed transcripts, and only the two
researchers listed will have access to your real name. Only two other researchers,
members of the second researchers Thesis Advisory Committee, will have access to the
transcripts (but your name wont be on the transcripts anyway). The tapes will be erased
once the research project has been completed (we estimate April 2005). Tapes and
transcripts will be kept in locked files when not in use. In line with current research rules,
the University of Calgary Conjoint Health Research Ethics Board will have access to
transcripts.
It is our hope to publish papers on what we have learned, so that other caregivers can
learn. When the research project is written up, further steps to preserve your privacy and
confidentiality will be taken. If there are background details that might identify you, these
will be changed.
SIGNATURES
Your signature on this form indicates that you have understood to your satisfaction the
information regarding your participation in the research project and agree to participate as
165
a subject. In no way does this waive your legal rights nor release the investigators, or
involved institutions from their legal and professional responsibilities. You are free to
withdraw from the study at any time without jeopardizing your health care. If you have
further questions concerning matters related to this research, please contact:
Dr. Lori Limacher (403) 210-9722
Or Blaine Beemer RN (403) 541-1026
If you have any questions concerning your rights as a possible participant in this research,
please contact Pat Evans, Associate Director, Internal Awards, Research Services,
University of Calgary, at 220-3782.
Participants Name
Signature and Date
Investigator/Delegates Name
Signature and Date
Witness Name
Signature and Date
The University of Calgary Conjoint Health Research Ethics Board has approved this
research study.
A signed copy of this consent form has been given to you to keep for your records and
reference.
166
APPENDIX D:
CALGARY RESOURCE GUIDE
Appendix
Calgary Resource Guide
Lalgarv Addiction Resources
Sexual Healt h
49
Crisis Services
AADAC 2nd Floor. 11-7" - 11 Ave S.W.

AAD AC Youth Services
Addictions C enter
AJ-Anon
Alcoholics Anonymous
Alpha House 2*03 - 15th Ave S.E.
Aventa (Villa for Women)
Cocaine Anonymous
Fresh Start
Native Addiction Services (Sunrise)
Narcotics Anonymous
Renfrew Recovery C enter
1611 Remington Rd. N.E.
Salvation Army (Addiction Treatment)
Servants Anonymous Society (women)
Simon House
Victory O utreach Foundation (women)
Women for Sobriety
1835 House
297-3071
297-4664
944-2029
266-5850
777-1212
234-7388
245-9050
229-5213
387-6266
261-7921
569-3427
297-3337
Com m unity Resource Team

Child & Adolescent Crisis
299-9699
410-1167
237-8477
247-2050
264-0598
253-9063
245-1196
Crisis
911
Police (non emergency) 266-1234
Ambulance (non emerg) 261-4000
Health Link
943-5465
Mental H ealth Link
943-1500
Poison Inform ation
944-1414
Distress C enter
(24 hr Crisis Line) 266-1605
Mobile Response Team
Mental Health Issues
9:00 a.m. - 11:00 p.m.
7 days per week
266-1605
Hospitals and Medical Clinics
Mental Health
Alberta C hildrens Hospital 943-7211

Foothills Hospital
944-1110
Peter Lougheed Center
943-4555
Rockyview Hospital
943-3000
A H Ponoka
263-2953
8!l' & 8<h M edical C enter
781-1200
CUPS
299-9690
Alexandra Com m unity Health Centre
266-2622
Anger M anagem ent Program s

265-4980
Assertive Community T reatm ent
297-4235
Bridging the Gap ( 16-24vr)
216-0660
Calgary Central Clinic
297-731!
Calgary North East Clinic
297-7196
297-7345
Calgary North W est Clinic
Canadian Mental Health Association 297-1700
299-9690
Calgary Urban Project (CUPS)
128 - 7th Ave S.E.
Calgary Association of Self Help
1019 - 7lh Ave S.W.
266-8711
Community G eriatric MH Services 303-6050
Developmental Disabilities
240-31II
265-4980
Eating Disorder Program
247-5381
Emotions Anonymous
943-3533
G rief Support P> ogram (RVH)
Organization for Bipolar Affective Disorder
263-7408
Psychiatric Assessment Services
944-1276
(Doctor Referral Required)
264-5161
Schizophrenia Society
297-1744
Suicide Services
Counseling Services
Calgary Counseling
4200. 940 - 6,h Ave S.W.
Eastside Family Center
4255, 495 - 361h St N.E.
Westside Family Center
6501 Bowness Rd N.W.
Distress Center
300. 1 0 1 0 - 8lh Ave S.W.
Urgent T herapy (RVH)
(Doctor Referral Required)
265-4980
299-9696
288-3313
266-1601
943-3230
167
APPENDIX E:
LETTER OF UNDERSTANDING
Letter of Understanding
A conference call was conducted 29 June 2005 by Blaine Beemers Master of Nursing
Thesis Committee consisting of Dr. Lori Limacher, Dr. Nancy Moules, and Dr. Shaniff
Esmail. At that meeting, excerpts of Blaines research writings were reviewed by the
Committee as part of Blaines thesis development.
The Committee felt that there were short passages that would be valuable if included in
Blaines thesis or subsequent published writing. Even though your name or anyone elses
are not used, circumstances of your experience of injury and coping are described.
Blaine and The Committee respect your confidentiality regarding the material you have
so kindly offered. It was decided to have all interviewees look at excerpts of this writing
to confirm that you are comfortable that with this level of description.
I have read excerpts from a draft of the Masters thesis entitled Sexual Health,
Relationships and Spinal Cord Injury: The Experience of Cohabiting Couples. I am
comfortable with this level of description that this and related material, and subsequent
writing derived from this for further academic use including scholarly publication.
Graduate Student Blaine Beemer

Name:_______________________
Name:_______________________
D ate:________________________

The Experience of Cohabiting Couples

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The Experience of Cohabiting Couples

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UNIVERSITY OF CALGARY

Sexual Health, Relationships and Spinal Cord Injury:

Blaine Richard Beemer

Blaine Richard Beemer 2006

395 W ellington Street

395, rue W ellington

The author retains copyright

L'auteur conserve la propriete du droit d'auteur

In compliance with the Canadian

Conformement a la loi canadienne

While these forms may be included

Bien que ces formulaires

CHAPTER 6: RESEARCH M ETH O D ................................................................................... 40

Research Interviews: Talking About Sex Can Be S e x y .................................................. 104

CHAPTER 11: CONCLUSIONS..................................

List of Symbols, Abbreviations and Nomenclature

If we are to distil these impressions, reflexivity describes an ongoing process of self

weeks in a rehabilitation facility. What

coached my brother to a provincial championship. There in the cool Alberta sun we

and parasympathetic (T 12 - L 2 ) nerve fibres, including the cavernous nerves which

I was amazed at Roses typification of Curts state as cranky. If I was in Curts

Rivas, D. A. C., Michael B. (1997). Management of erectile dysfunction. In M. L. Sipski

APPENDIX C: INFORMED CONSENT

CONSENT TO PARTICIPATE IN RESEARCH

T IT L E : Sexual Health, Relationships and Spinal Cord Injury: The Experience of

Lori Limacher RN PhD

WHAT ARE THE RISKS?

WILL I BENEFIT IF I TAKE PART?

WILL I BE PAID FOR PARTICIPATING. OR DO I HAVE TO PAY FOR

WILL MY RECORDS BE KEPT PRIVATE?

Signature and Date

Signature and Date

Signature and Date

Calgary Resource Guide

Lalgarv Addiction Resources

AADAC 2nd Floor. 11-7" - 11 Ave S.W.

Com m unity Resource Team

Hospitals and Medical Clinics

Alberta C hildrens Hospital 943-7211

Anger M anagem ent Program s

Graduate Student Blaine Beemer

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