COUPLES‟ SEXUAL RECOVERY AFTER SURGERY FOR PROSTATE CANCER:
THE DEVELOPMENT OF A CONCEPTUAL MODEL
By
Daniela Wittmann

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
Social Work – Doctor of Philosophy
2013

ABSTRACT
COUPLES‟ SEXUAL RECOVERY AFTER SURGERY FOR PROSTATE CANCER:
THE DEVELOPMENT OF A CONCEPTUAL MODEL.
By
Daniela Wittmann
The goal of this multiple-manuscript dissertation is to addresses a gap in the literature on
couples‟ sexual recovery after surgery for prostate cancer in order to arrive at a testable
conceptual model of couples‟ sexual recovery. The three manuscripts are independent in their
research questions and methodologies, but are related in their exploratory nature and in their
effort to examine different aspects of couples‟ sexual recovery. In Chapter I, the theoretical
framework of the research is described and a preliminary model of couples‟ sexual recovery is
proposed. It is a biopsychosocial model of sexuality, with grief as a process through which
couples work on recovery. In Chapter II, a qualitative study describes couples‟ anticipation of the
sexual recovery and their actual experience after surgery. The study findings support the
theoretical framework in which couples experience the affect of the side-effects of prostate
cancer surgery on the biopsychosocial aspects of sexuality and cope more or less successfully
with the sexual losses through grief and mourning, which starts at diagnosis. Female partners‟
interest in sex, regardless of menopausal status of their sexual function, makes a contribution to
the recovery. Chapter III presents the second study, also qualitative, and describes patients‟ and
partners‟ view of the role of the partner in the sexual recovery. Men and partners have many
common perceptions of the role, including the importance of the partner‟s interest in sex
regardless of menopause. However, the men generally are not aware of partners‟ sexual needs
and needs of support; partners are not certain about help-seeking. The third study, described in
Chapter IV, is a quantitative study that uses validated measures to trace the change in patients‟

and partners‟ sexual function, sexual satisfaction, and dyadic satisfaction from before surgery to
18 months after surgery, on average. In spite of the patients‟ improving sexual function, sexual
satisfaction of patients as well as partners decreased. Female partners‟ dyadic satisfaction
appears to depend on the partner‟s sexual satisfaction and the couple‟s level of income. The
author integrates the three studies‟ findings into extant research literature and, based on the
findings of the dissertation research, proposes a conceptual model of couples‟ sexual recovery
after surgery for prostate cancer that can be tested in confirmatory, hypothesis driven research.

Copyright by
DANIELA WITTMANN
2013

DEDICATION
This dissertation is dedicated my parents Marie and Ervin Wittmann whose courage in
life is my model, and to my children Madeleine and Spencer Amdur, as well as to my
brother George Wittmann, whose faith in me gives me confidence. It is dedicated to my
husband Jonathan Cohn, whose love, irrepressible enthusiasm for my work, intellectual
companionship, and delicious meals helped propel me through graduate school.
It is also dedicated to Jim Montie, whose commitment to prostate cancer patients has
been an inspiration, and whose mentorship and uncanny ability to see what I was capable
of, even before I could see it, has lit the road on which I am now traveling.
Finally, this dissertation is dedicated to all the patients who gave me the privilege of
entering into their lives and who taught me everything I know.

v

ACKNOWLEDGMENTS

I wish to thank Dr. Sheryl Pimlott-Kubiak for guiding me throughout my whole PhD
program, for always supporting me, and for holding me to a higher standard; Dr. Anne Hughes,
my preceptor for the American Cancer Society Training Grant for her honest, constructive
feedback and friendship; Dr. Marsha Carolan for mentoring me on qualitative analysis and for
always being willing to give me extra time; Dr. Barbara Given for taking an interest in my work,
for mentorship, and for invaluable advice on career development; Dr. Bradley Zebrack for
encouraging all my research efforts and for never letting me forget the social work perspective.
I also wish to thank Sallie Foley who, against my initial protests, knew that work in
sexual health would be a good fit for me; Susan Pollans and Alan Levy, Steve Foley, Mindy and
Bobby Frank, Anne and Tom Segall, Jane Hassinger and Marvin Parnes, and Debbie Campbell,
whose patience and generous friendship for many years gave me the emotional strength and
intellectual preparation for this undertaking. I wish to thank my University of Michigan Urology
Department Chair Dr. David Bloom for his sense of fairness and for having given me the chance
to go and get a PhD; Jack Cichon, MBA and Malissa Eversole, MBA, who gave me resources to
do my work and present it at national meetings; and to my Social Work Department Director Dr.
Kathy Wade and managers Stefanie Peters, MSW, MPH and Anita Clos, MSW who made every
effort to make my work schedule flexible so that I could take classes and fulfill my obligations to
the PhD program while I worked.
My thanks go as well to Dr. Richard Balon for having given me the first opportunities to
write for peer reviewed journals, and to Dr. David Wood, Jr. who gave me enthusiastic support
for my work in prostate cancer survivorship and for my graduate work. I have greatly

vi

appreciated the collaboration with the urologic nurse practitioners Staci Mitchell, NP and Nancy
Rodriguez-Galano, NP, as well as urologic nurse Victor Hola, RN, CSC, whose copious
knowledge of the issues patients face in survivorship has provided me with a rich learning
ground during the past six years. My certified sex therapist colleagues, Claudia Piper, MSW,
Casey O‟Gara, MSW, and Joyce Glisson, MSW, helped me learn the ropes as a sex therapist.
Finally, I would like to thank the American Cancer Society for having awarded me the
Doctoral Training Grant in Oncology Social Work for four years, thus funding my dissertation
research from conception to completion.

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TABLE OF CONTENTS

LIST OF TABLES. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi
LIST OF FIGURES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii
CHAPTER ONE
AN OVERVIEW OF THE DISSERTATION RESEARCH. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3
Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5
Review of the Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Preliminary Model of Couples‟ Sexual Recovery. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Overarching Research Questions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Methodology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Significance. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
CHAPTER TWO
COUPLES SEXUAL RECOVERY AFTER SURGERY FOR PROSTATE CANCER:
SHARED EXPERIENCES OF 20 COUPLES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .17
Abstract. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Background. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Preliminary Model of Couples‟ Sexual Recovery After Surgery for Prostate Cancer. . . 22
Method. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .24
Study Sample. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .24
Procedure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Data Analysis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26
Assurance of Data Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Results. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Sample Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27
Interview Findings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29
Characteristics of the Pre-Operative Experience . . . . . . . . . . . . . . . . . . . 30
Characteristics of the Post-Operative Experience. . . . . . . . . . . . . . . . . . . 33
Discussion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Couples‟ Anticipation of Sexual Recovery Before Surgery. . . . . . . . . . . . . . . . .38
Couples‟ Experience of Sexual Recovery. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .40
Grief. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .42
Study Strengths and Limitations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Implications for Social Work Practice. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .43
Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .46
CHAPTER THREE

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THE ROLE OF THE PARTNER IN COUPLES‟ SEXUAL RECOVERY AFTER SURGERY
FOR PROSTATE CANCER . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . 46
Abstract. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
Background. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
Method. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53
Study Sample. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .54
Procedure. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .54
Data Analysis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55
Assurance of Data Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
Results. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
Sample Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55
Interview Findings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .57
Context: Couples‟ Sexuality and Sexual Recovery as It Is Now. . . . . . . .57
Men‟s Perception of the Partner Role. . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
Partners‟ Perception of the Partner Role. . . . . . . . . . . . . . . . . . . . . . . . . . 65
Discussion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
Study Strengths and Limitations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
Implications for Social Work Practice. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .72
Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .73
CHAPTER FOUR
COUPLES‟ SEXUAL RECOVERY TRAJECTORY DURING THE FIRST TWO YEARS
AFTER SURGERY FOR PROSTATE CANCER: SEXUAL FUNCTION, SEXUAL
SATISFACTION, AND DYADIC SATISFACTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .74
Abstract. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
Background. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75
Method. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80
Study Sample. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80
Procedure. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80
Measures. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
Data Analyses. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
Results. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
Description of he Sample . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
Level 1 Analysis: Functional Outcomes at T1 (Baseline), T2
(Three Months After Surgery), and T3 (18 Months After Surgery). . . . . 86
Level 2 Analysis: Patient and Partner Comparison. . . . . . . . . . . . . . . . . . . . . . . 88
Level 3 Analysis: Inclusion of Covariates. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .90
Discussion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92
Study Strengths and Limitations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .94
Tentative Implications for Social Work Practice. . . . . . . . . . . . . . . . . . . . . . . . . .95
Implications for Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
CHAPTER FIVE
INTEGRATION OF FINDINGS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
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Building a Theoretical Model of Couples‟ Sexual Recovery After Surgery
for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
Strengths of the Dissertation Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107
Limitations of the Dissertation Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Implications for Social Work Practice. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .110
Future Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .112
APPENDICES , . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
APPENDIX I: SEMI-STRUCTURED INTERVIEW GUIDES . . . . . . . . . . . . . . . . . 116
APPENDIX II: MEASURES. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124
REFERENCES . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133

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LIST OF TABLES

Table 2.1

Sample Demographic Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Table 2.2

Patients‟ Clinical Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Table 2.3

Patients‟ and Partners‟ Statements in Anticipation of Surgery. . . . . . . . . . . . . . . 31

Table 2.4

Patients‟ And Partners‟ Statements 3-4 Months After Surgery. . . . . . . . . . . . . . .35

Table 3.1

Sample Demographic Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56

Table 4.1

Data Structure Used in the Analyses with Hypothetical Cases. . . . . . . . . . . . . . .81

Table 4.2

Demographic Characteristics of Participants. . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Table 4.3.

Patients‟ Clinical Characteristics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .87

Table 4.4

Men‟s and Partners Functional Scores at Three Time Points . . . . . . . . . . . . . . . 89

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LIST OF FIGURES

Figure 1.1

Preliminary Model of Couples‟ Sexual Recovery after Surgery
for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Figure 2.1

Preliminary Model of Couples‟ Sexual Recovery after Surgery
for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Figure 2.2

Revised Model of Couples‟ Sexual Recovery after Surgery
for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Figure 3.1

Patients‟ View of the Partner‟s Role in the Couple‟s Sexual Recovery
after Surgery for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Figure 3.2

Partners‟ View of the Partner‟s Role in the Couple‟s Sexual Recovery
after Surgery for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Figure 4.1

Dyadic Satisfaction at T1, T2, and T3 with Error Terms. . . . . . . . . . . . . . . . . . .90

Figure 4.2

Female Dyadic Satisfaction Based on Female Sexual Satisfaction
and Income . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91

Figure 5.1

Conceptual Model of Couples‟ Sexual Recovery after Surgery
for Prostate Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108

xii

CHAPTER I
AN OVERVIEW OF THE DISSERTATION RESEARCH
The dissertation comprises five chapters organized in a multiple manuscript format.
Three manuscript chapters follow an Abstract; these chapters are designed to conform to a
format suitable for submission to a peer-reviewed journal. The Integration of Findings chapter
summarizes the research findings.
Chapter I introduces the key concepts relevant to couples‟ sexual recovery after prostate
cancer surgery and provides a review of the research literature on the sexual side-effects of
prostate cancer, men‟s experience, partners‟ response, and the effect of men‟s sexual problems
on couples. The introductory chapter identifies the gap in the research literature and serves to
frame the research questions motivating the dissertation research. The author describes the
research‟s data collection, which includes two waves of interview and survey data available from
a previous study on barriers to couples‟ sexual recovery after surgery for prostate cancer, and a
third wave of data collection from the same sample during the dissertation phase. The author
proposes the rationale for using mixed methodology in the dissertation research and explains the
significance of the topic studied. A preliminary theoretical model that has guided the dissertation
research is presented.
Chapter II, entitled “Couples‟ Sexual Recovery After Surgery for Prostate Cancer: Shared
Experiences,” describes the findings from a study which used pre- and post-operative interviews
with 20 couples to understand couples‟ experiential perspectives on the anticipation of and
coping with the sexual side-effects of prostate cancer surgery. In this study, the author used
existing interview data from a previous study of barriers to couples‟ sexual recovery after
surgery for prostate cancer. Using the analytic induction method, she re-analyzed the interviews

1

qualitatively according to the dissertation research questions. A revised version of the
preliminary model summarizes the study findings. Clinical implications of the findings, as well
as suggested next-steps in research, conclude the chapter.
In Chapter III, entitled “The Role of the Partner in Couples‟ Sexual Recovery After
Surgery for Prostate Cancer”, the author presents findings about the role of the partner in the
man‟s recovery of erectile function and the couple‟s recovery of their sexual relationship from
both the patient‟s and partner‟s points of view. New interview data were collected during the
dissertation phase, this time from men and partners separately, to ensure participants of the
confidentiality of their particular perspective. The interviews were conducted and analyzed
qualitatively using Grounded Theory. The findings extend current knowledge about partners‟
roles in the couple‟s sexual recovery and point to specific partners‟ needs that have been
identified to date. The chapter concludes with a description of the relevance of the findings to
clinical practice and poses research questions that stem from the findings.
The third study, reported in Chapter IV and entitled “Couples‟ Trajectory During the First
Year After Prostate Cancer Surgery: Change in Sexual Function, Sexual Satisfaction, and Dyadic
Adjustment”, reviews quantitative studies describing the impact of men‟s erectile dysfunction on
couples after surgery for prostate cancer. It presents the research questions that guide this study,
as derived from the gap in the literature. Two waves of survey data from the pre- and postoperative periods of participants in the previous study on barriers to couples‟ sexual recovery
after prostate cancer surgery are used for this study‟s analyses. A third phase of data collection
was initiated during the dissertation phase. With questionnaire data from three time points, i.e.,
pre-operative, post-operative, and approximately 18 months after surgery, trajectories are
presented of men‟s erectile function, women‟s sexual function, men‟s and women‟s sexual

2

satisfaction, and couples‟ dyadic adjustment. Multilevel analysis is used to identify statistically
significant change in these functional variables over the three time points in an attempt to
identify potential predictors for the change. Given the significant limitation of small sample size,
the study findings are used to triangulate those of the qualitative analyses of the interviews,
described in the previous two chapters. Potential implications for social work practice are
discussed.
Chapter V, titled “Integration of Findings,” combines the qualitative and quantitative
findings into a coherent representation of the experience of couples‟ sexual recovery after
prostate cancer surgery. It relates the findings of the dissertation research to the extant literature
and revises the preliminary model of couples‟ sexual recovery based on those findings. The
author comments on the significance of the findings and describes potential clinical implications
for social work practice. She suggests that the dissertation research can be considered a pilot
study and the findings exploratory in nature. She also discusses the distinction between
transferability and generalizability of findings to the population of prostate cancer survivors and
their partners, with a suggestion for further, confirmatory research necessary to validate the
derived model of couples‟ sexual recovery after prostate cancer surgery.
Introduction
During the last five decades, early detection and successful treatment of many cancers
has extended patient survival for years, and even decades. In 2012, an estimated 241,740 men
would be diagnosed with prostate cancer (Siegel, Naishadham, & Jemal, 2012). Ninety-eight
percent of these men would be expected to survive five or more years. This dissertation research
will focus on men who undergo definitive surgical treatment (treatment whose goal is to totally

3

eradicate the cancer) for localized prostate cancer with the expectation of long-term survival for
the majority.
Long-term survival means the absence of cancer, but the victory over cancer is not
without its price. Harsh and definitive surgical treatments, such as surgery or radiation therapy,
can result in short- and long-term side-effects whose nature and responsiveness to interventions
are not yet fully understood. In response to the recognition that long-term survivors may
experience reduced quality of life as a result of cancer and cancer treatment, the Institute of
Medicine published a recommendation that psycho-social support be available to cancer
survivors (Adler & Page, 2008). Sexuality, while addressed in a limited way, is recognized as
one of the aspects of survivors‟ lives that require assessment and treatment.
The sexual side-effects and recovery process after surgery for prostate cancer have shown
themselves to be challenging to men, partners, and their relationships. The available research
literature demonstrates that men experience erectile dysfunction, that they are unhappy with their
level of recovery of erectile function, that partners experience distress, and that couples do not
work well together to recover their intimate lives. Although sexual problems of prostate cancer
survivors and their partners have been studied to some degree and some interventions do exist,
couples‟ experiences of sexual recovery are not well understood. There is no existing model that
integrates the dynamics of the biopsychosocial aspects of couples‟ sexual recovery. There is also
no model of the recovery process through which couples attempt to re-establish their intimate
lives after prostate cancer surgery. Without a theoretical model, interventions are fragmented and
often meet with limited success. At this time, we do not even know for certain what the end
points in the recovery process are and as such, when and what support couples need.

4

This study begins with a definition of sexuality as a biopsychosocial experience; it seeks
to understand couples‟ anticipation of and response to the losses within their sexual relationship
that are a consequence of the loss of men‟s erectile function after surgery. Further, the study aims
to elucidate the process through which couples cope and recover, or perhaps do not recover,
sexual intimacy. The study is longitudinal, i.e., it begins with an effort to identify couples‟ preexisting, long-term „couple‟ strengths that facilitate recovery, as well as describing hindrances
that impede sexual recovery and may have to be overcome in the recovery process. The study
places couples‟ sexual recovery in the theoretical framework of grief theory (Parkes, 1971, 1998)
and seeks to identify characteristics that lead to a successful recovery. Finally, the study hopes
to contribute to the emerging research on post-cancer thriving, which comes from the literature
on young adult survivors of childhood cancer (Parry & Chesler, 2005).
Definitions
The consensus definition of “sexual function” is based on Helen Singer Kaplan‟s model
of the human sexual response. This model emphasizes “a temporal sequencing and coordination
of several phases, including sexual desire (libido), arousal (excitement), orgasm and satisfaction”
(Basson et al., 2000). Sexual function is considered to be a stable trait with endurance over time
(Wilmoth & Tingle, 2001). It can be thought of as the physiologic or biologic aspect of sexuality.
“Sexual dysfunction” is defined in both the International Classification of Diseases, 9th
Revision (ICD-9) and the Diagnostic Statistical Manual, 4th Edition (Text Revision) (DSMIV)
as “the various ways in which an individual is unable to participate in a sexual relationship as he
or she would wish”, including lack or loss of sexual desire, sexual aversion disorder, failure of
genital response (erectile dysfunction, rapid ejaculation, poor vaginal lubrication), orgasmic

5

dysfunction, nonorganic vaginismus, nonorganic dyspareunia, and excessive sexual drive
(Vroege, Gijs, & Hengeveld, 1998).
“Sexuality” is an overarching concept that is a part of our biological, psychological, and
social imprint. Former Surgeon General, David Satcher (2001) described sexuality as “an
integral part of human life . . . (which). . . can foster intimacy and bonding as well as shared
pleasure in our relationships. . . .” (Satcher, 2001).
“Sexual health” is defined by the World Health Organization (WHO) (2002) as “a state of
physical, emotional, mental and social well-being in relation to sexuality.” WHO recognizes that
sexual health can be affected by chronic and acute illness and may require intervention at an
individual, family, and community level throughout the lifespan (WHO, 2002).
For the purpose of this research, the definition of “sexuality” will combine the above
definitions and integrate sexual function with the personal and partnered experience of sex
because such a definition best reflects the biopsychosocial aspects of the way in which people
live their sexual lives.
“Recovery” is a concept best known in the fields of mental health and substance abuse. It
is defined as “a process of change through which individuals improve their health and wellness,
live a self-directed life, and strive to reach their full potential” (Substance Abuse and Mental
Health Services Administration, SAMHSA, 2011). This is a definition that is easily applied to
couples‟ sexual recovery because health, wellness, self-directed life or self-efficacy, and full
potential are also the goals that couples pursue as they try to rebuild their intimate lives after
prostate cancer surgery. It is important to note that recovery does not necessarily imply return to
baseline.
Review of the Literature

6

Prostate cancer is a highly prevalent disease with one in six men having a chance of being
diagnosed with it in his lifetime. Upward of 90% of men survive for 15 or more years (Siegel et
al., 2012). Men, while well adapted otherwise, continue to be bothered by sexual losses after
surgical treatment (Hollenbeck, Dunn, Wei, Sandler, & Sanda, 2004; Sanda et al., 2008; Wei et
al., 2002). The primary sexual loss is the loss of erectile function (Matthew et al., 2005; Schover
et al., 2002a). Men speak of feeling less manly, of avoiding relating to women, of grief, and of
the loss of quality of life (Bokhour, Clark, Inui, Silliman, & Talcott, 2001; Hedestig, Sandman,
Tomic, & Widmark, 2005; Katz, 2005).
Descriptive studies suggest that men‟s sexual difficulties affect partners, too, and have an
impact on the couple relationship. Partners evidence a high level of distress (Couper et al.,
2006a). Differently timed experience of distress between partners can lead to marital
dissatisfaction (Couper et al., 2006b). Couples do not communicate effectively about their sexual
problems (Ptacek, Pierce, Ptacek, & Nogel, 1999) and do not seek help for sexual recovery
(Miller et al., 2006; Schover et al., 2004). Little is known about how couples process sexual
changes due to prostatectomy.
The majority of intervention research in prostate cancer has focused on promoting the
recovery of physiologic (erectile) function. Penile rehabilitation, an emerging early intervention
strategy, is designed to maximize erectile recovery (Mazzola & Mulhall, 2011; Mulhall, Bella,
Briganti, McCullough, & Brock, 2010; Raina, Pahlajani, Agarwal, & Zippe, 2007). Medical aids
such as phosphodiesterase-5 inhibitors, penile suppositories and penile injections of alprostadil
or prostaglandin E, and non-medical erectile aids such as vacuum erectile devices have shown
efficacy in aiding erectile function (Incrocci, Slagter, Slob, & Hop, 2006; Montorsi et al., 2010;

7

Raina et al., 2005). However, men try medical aids infrequently and discontinue their use early
despite unhappiness with sexual problems (Miller, et al., 2006).
Most studies that focus on psychosocial interventions do not address sexual issues
directly. They have emphasized: (a) psycho-education (Manne, Babb, Pinover, Horwitz, &
Ebbert, 2004); (b) combined psycho-education and offer of erectile aids (Canada, Neese, Sui, &
Schover, 2005; Davison, Elliott, Ekland, Griffin, & Wiens, 2005; Titta, Tavolini, Moro,
Cisternino, & Bassi, 2006); and (c) relationship enhancement (Manne et al., 2011). A review of
interventions to help couples with sexual problems secondary to prostate cancer treatments found
that psychosocial interventions primarily promoted psychological adjustment, with sexual
recovery as a secondary goal (Latini, Hart, Coon, & Knight, 2009). The authors propose the need
for a biopsychosocial model of recovery responsive to survivors‟ sexual concerns.
Acknowledgement of the biopsychosocial nature of the effect of cancer on sexuality has
begun in the past few years. Tierney (2008) described the three dimensions of sexuality affected
by cancer and its treatment: physiology, psychology, and relationship. She suggested that these
three dimensions are interdependent and interactive and must be addressed together in
interventions. Similarly, Bober and colleagues (2012), in a review of current knowledge about
cancer and sexuality, described the impact of the illness upon the same three dimensions of
sexuality and added the dimensions of ethnicity, religion, and culture as well. Wittmann (2011)
proposed a model of the process of recovery through grief and mourning; however, this model
has not been studied empirically. A well designed, recently published study comparing online
and in-person couple intervention to promote sexual recovery after prostate cancer treatment
does include biopsychosocial components of sexuality and additionally addresses menopause of

8

the female partner (Schover et al., 2011). However, the study does not address the process of
recovery as such.
Gap in the Literature
Given the fact that prostate cancer is diagnosed in mid- or later life, it is surprising that
certain contextual and psychological issues are not included as significant contributors to the
post-prostatectomy couples‟ experience with altered sexuality. In fact they are neglected. Such
contributors include: (a) developmental changes that have an impact on sexual physiology and
function in midlife, including menopause and pre-operative erectile dysfunction; (b) couples‟
emotional response, including grief and mourning, to the loss of familiar sexual relationship after
menopause and prostatectomy; and (c) couples‟ construction of the role of sexuality in their
relationship and its reconstruction based on the female partner‟s menopause and the man‟s
altered sexual function post-prostatectomy. These contextual and psychological issues potentially
have an impact on couples‟ long-term coping with the sexual changes after surgery for prostate
cancer.
Men’s aging-related erectile dysfunction and female partners’ post-menopausal
sexuality.
We do not know how couples cope with developmental changes in their sexual
relationship. Despite erectile dysfunction due to aging or co-morbidities, most men preserve
sexual desire and are motivated to continue to be sexually active. Loss of estrogen lowers
women‟s desire for sexual activity and creates difficulties in lubrication. A modified approach to
sexuality is needed for the female partner to stay engaged sexually (Basson, 2004). While men
have the ability to use medications to maintain erectile function, it is unclear how couples
understand post-menopausal women‟s sexual potential: they may give up on sex prematurely.

9

The role of grief and mourning.
Age-related sexual losses usher in emotional responses, including grief and mourning,
and a need to construct a new sexual relationship. The emotional adjustment of couples to
developmental sexual changes when the man has prostate cancer and the level of confidence that
couples have regarding solving sexual problems have not been examined empirically. The
author‟s clinical experience in working with couples after prostate cancer surgery suggests that,
while female partners can be sexually re-engaged and couples can develop greater intimacy as
they work on retaining their sexual relationship, both female partners and men can experience
feelings of loss of former sexuality. Extant interventions designed to promote sexual recovery
have not addressed couples‟ loss and grief, nor their motivation and ability to maintain the
viability of the female partner‟s post-menopausal sexuality. If interventions are to address the
complex, dynamic needs of recovering couples, a model of sexual recovery must include these
aspects of the couple‟s sexual relationship.
The role of the partner.
Studies suggest that the partner has a critical role in the sexual recovery of the prostate
cancer survivor (Soloway, Soloway, Kim, & Kava, 2005; Wootten et al., 2007). However,
survivors‟ and partners‟ own attitudes and feelings about the partner‟s role have not been
examined. If couples are to be helped in their sexual recovery, the partner‟s role must be better
understood. Partners may need support, particularly if post-menopausal female partners have
their own, unaddressed sexual concerns during the men‟s sexual recovery after prostate cancer
surgery.
Couples’ construction of the role of sexuality in their relationship.

10

There is a need for research that recognizes that couples‟ sexual recovery is interactional
by nature, and that understanding the perceptions from the patient‟s and partner‟s points of view
are crucial. The interactional nature of couple emotional intimacy has been proposed to some
extent in the breast cancer recovery research literature. Manne and colleagues (2004) proposed
that couple relationship (i.e., emotional) intimacy could enhance or harm couples‟ recovery after
cancer treatment (Manne et al., 2004). However, an intervention based on this model, with
couples in which the man had prostate cancer, did not address the physiologic and psychological
issues in prostate cancer and did not have a discernible effect on couples‟ emotional intimacy
and disclosure (Manne et al., 2011). The intervention was primarily helpful to couples having
fewer psychological resources. We currently do not know how men and their partners interact in
relation to the losses inherent in the sexual changes of middle age, how they reconstruct sexuality
after these developmental changes, and the value they put on recovering sexual intimacy after
prostate cancer surgery.
Preliminary Model of Couples’ Sexual Recovery
In order to anticipate a model of sexual recovery after prostate cancer surgery, the author
has developed a preliminary model. It adopts the biopsychosocial theory of sexuality that
resonates with a biopsychosocial theory of social work (Simpson, Williams, & Segall, 2007).
The model conceptualizes the sexual side-effect of surgery for prostate cancer as a sexual loss,
which parallels a schema of sexual loss and altered sexuality developed theoretically in breast
cancer research (Wilmoth, 2001).
In this preliminary model, the diagnosis of prostate cancer and the treatment-related sideeffects usher in a „psycho-social transition‟ whereby a life-altering event begins the process of
adaptation and recovery. Psycho-social transition, a construct first described in the sociology and

11

grief literature, is a moment in time when assumptions about the world are unalterably changed
by a new experience. The transition requires that the person or couple give up an emotional
attachment to the way things were in order to begin the process of acceptance of the new
situation and the development of new functioning in that context (Parkes, 1971). By definition, a
psycho-social transition involves loss. In order to be overcome, a loss must be grieved and
mourned (Worden, 1996). In this model of sexual recovery after surgery for prostate cancer, the
diagnosis of prostate cancer forces the couple to recognize that the man‟s sexual function and the
couple‟s sexual relationship will be irrevocably altered by prostate cancer surgery. The change
represents loss and recovery begins when the couple is able to grieve and mourn the loss of the
man‟s sexual function and the changes in the sexual relationship (Figure 1.1). Pre-operative
sexual and couple functioning mediate the couple‟s sexual recovery; physiologic and
psychosocial interventions interact with the couple function and influence each other‟s effect on
the sexual recovery.
Figure 1.1 Preliminary Model of Couples’ Sexual Recovery After Prostate Cancer
Surgery

Psychosocial
transition

Couple
sexual
relationship

Erectile
dysfunction
Urinary
incontinence

12

Bio
psycho
social
sexual
losses
usher in
grief and
mourning

bipsychosocial
interventions

Man‟s and
partner‟s
sexual
function

Prostatectomy

Pre-op

Couple
sexual
recovery

Because it is impossible to anticipate how an individual man will recover his erectile
function, the loss is ambiguous. Boss (1999), in her book on ambiguous loss, illuminates the
special difficulty which ambiguous loss poses, i.e., uncertainty, expressed as a combination of
hopeful longing and deep fear.
Overarching Research Questions
The dissertation research attempts to answer the following research questions: How do
couples anticipate sexual recovery after prostate cancer surgery? How do they work through the
tasks of recovery as a couple? How do they describe their strengths and the challenges in the
process? What is the role of the partner in the sexual recovery of the couple as viewed by both
the men and the partners? As the man‟s sexual function changes, is the couple‟s dyadic
adjustment/satisfaction affected? What is the trajectory of their recovery as measured by sexual
function, sexual satisfaction, and dyadic satisfaction measures?
Methodology
The dissertation research is exploratory and uses a mixed-methods longitudinal design.
As so little is known about how couples recover sexual intimacy after surgery for prostate
cancer, the goal of the research was to discover concepts that could be used to shape a model of
sexual recovery. Interviews with couples before and after surgery provided data for two of the
included studies and these data were analyzed qualitatively. In addition, validated measures were
analyzed quantitatively in the third study to assess functional outcomes relevant to the sexual
recovery process, i.e., sexual function and sexual satisfaction for both members of the couple, as
well as dyadic adjustment/satisfaction.
The first dissertation study used data from a previous mixed-method study on barriers to
couples‟ sexual recovery, which was in progress at the University of Michigan („Barriers‟ study).

13

In the „Barriers‟ study, couples were included if the man had prostate cancer and a partner, if
both were willing and able to sign Informed Consent, and if both were not disqualified because
of cognitive or language comprehension issues. These couples were interviewed using semistructured interview schedules at two time points (before the surgery and three months after the
surgery). Transcripts from both sets of interviews were available for the dissertation research.
The interview guide questions about sexual recovery were open-ended, and the data collected
could be re-analyzed in response to the research questions of the dissertation research.
During the dissertation period, a new wave of data collection was initiated after the
University of Michigan Institutional Review Board approved an amendment to the protocol
Participants from the previous study were asked to consent to filling out the same surveys they
had filled out during the previous study. They were also asked to consent to being interviewed
regarding the role of the partner in the sexual recovery. The data from these interviews were
analyzed for the second study.
Validated measures assessments of men‟s and partners‟ sexual function, sexual
satisfaction, and dyadic satisfaction were obtained during the pre- and post-operative time points
of the „Barriers‟ study, as well as during the dissertation phase, totaling three time points in all.
Demographic data from the first time point were used for this study. These data were analyzed
for the third dissertation study.
One hundred and eight couples were eligible and 30 couples were enrolled in the study
(38% response rate). Thirty-one patients did not return calls. Reasons given by those who
declined participation included partner not interested (10), patient not interested (8), distance (9),
no time (5), choice of radiation treatment (2), and miscellaneous others (13). Prior to surgery,

14

one couple dropped out because of the close proximity of the scheduled research interview to
surgery. This reduced the pre-operative sample to 29.
After surgery, 20 couples were available for the study. Reasons given by couples for
dropping out during the post-operative phase included a choice of radiation treatment rather than
surgery (3), absence for more than five months (1), and lack of time because of the man‟s return
to work or the couple‟s return to retirement activities (5).
These couples did not anticipate the third wave of data collection, but 10 men and nine
partners were willing to participate in the study described in Chapter III. Sixteen men and
partners returned surveys. The reasons given by the couples for non-participation were death of
the patient (1), and the couples‟ feeling that they were now at a distance from the surgery and did
not wish to prioritize participation in the study (4). One couple returned to the study for the third
time point although they did not participate during the post-operative phase. The survey data
from all three time points were used in the study described in Chapter IV.
The findings from all three studies were integrated in order to develop a model of
couples‟ sexual recovery after surgery for prostate cancer. The qualitative and quantitative
methodologies complemented each other and triangulated each other‟s findings. The findings of
this research will be considered transferable, but not generalizable to the population of prostate
cancer survivors and their partners.
Significance
This research on couples‟ sexual recovery after surgery for prostate cancer is innovative
in that, for the first time, it gives voice to the couples who are actually going through the
experience of sexual recovery after surgery for prostate cancer. It is also innovative because it
explores the couples‟ experience of sexual recovery from before the surgery, thus providing new

15

information about couples‟ anticipation of sexual recovery, which has not been available until
now. Finally, the longitudinal nature of the study and its use of mixed methodology enables the
researcher to trace measurable aspects of the couples‟ relationship over time to provide a
prospective, real-time sense of the impact of prostate cancer surgery on couples‟ functioning in
several domains – sexual function, sexual satisfaction, and dyadic satisfaction.
The long-term goal of this research is to build a model that can be confirmed through
hypothesis-driven studies with larger samples. If confirmed, the model can serve as a theoretical
platform for the development of interventions to empower couples, offering them a
biopsychosocial roadmap to sexual recovery with which they can identify and which they can
embrace. Although the recovery of a sexual relationship after other cancers may have unique
elements, it is likely that this model could be adapted for other cancer survivor populations to
build interventions for couples who want to work on recovering their intimate lives after
treatment.

16

CHAPTER II
COUPLES SEXUAL RECOVERY AFTER SURGERY FOR PROSTATE CANCER:
SHARED EXPERIENCES
Abstract
Background: Couples‟ expectations and coping strategies that lead to the recovery of
sexual intimacy after prostatectomy are not well understood. This study sought to understand
couples‟ common experiences of sexual recovery after surgery for prostate cancer and to
empirically assess a proposed model of couples‟ sexual recovery. Method: Audiotaped and
transcribed semi-structured interviews with 20 couples before and three months after surgery
were available from a previous study. Using the qualitative methodology of Analytic
Induction and NVivo 9 software, interview data were systematically examined to test a
preliminary theoretical model. Results: Ninety-five percent of couples were sexually active
before surgery. They came to surgery with worry about cancer, and with anticipatory grief
regarding the expected loss of urinary and sexual function. All said sexual recovery was
important to them. Based on appraisal of their couple strengths, motivation to work on sexual
recovery and on their surgeon‟s competence, couples had high expectations for erectile
recovery, yet expressed dislike of erectile aids. After surgery, most men required erectogenic
assistance. Nearly 50% of couples were not sexually active. They experienced feelings
associated with loss and grief and found sexual recovery arduous. Men felt less masculine.
Partners adopted a supportive role although some were ambivalent about their sexual role.
Positive coping included good communication, ongoing sexual activity, partner‟s positive
attitude to sex regardless of menopause, and acceptance of lower sexual function. Barriers to
recovery included dislike of erectile aids, complicated by grief; partner‟s disinterest in sex,

17

and relationship problems. Conclusions: The study confirmed and extended the preliminary
model of sexual recovery after surgery for prostate cancer.
Background
Couples‟ recovery of sexual intimacy after prostate cancer surgery has not been studied
empirically despite the well-known fact that men‟s erectile dysfunction, a side-effect of prostate
cancer surgery, has an impact on men, partners, and the couple relationship. This study was
designed to explore this gap in the research in order to provide a model for the development of
interventions addressed to couples.
Prostate cancer is a highly prevalent disease, with one in six men having a chance of
being diagnosed with it in his lifetime. Upward of 90% of men treated definitively for localized
prostate cancer survive for 15 or more years (Siegel et al., 2012). Men‟s difficulties with the
sexual side-effects of prostate cancer treatment have been well described (Benson, Serefoglu, &
Hellstrom, 2012; Gomella, 2007; Hollenbeck, Dunn, Wei, Sandler, & Sanda, 2004; Incrocci,
2006). Erectile dysfunction, the primary side-effect, is most dramatically experienced by men
immediately after surgical treatment and is slow to remit. For most men, erections do not return
to their baseline function; for some, erectile dysfunction becomes a way of life (Schover et al.,
2002). Healing of the damaged nerves responsible for erectile function is considered to be
complete or nearly complete after two years, and men are told that the degree of erectile function
attained at two years after surgical treatment is likely to be the extent of their erectile recovery
(Miller et al., 2005).
Longitudinal studies of the quality of life in prostate cancer have used validated measures
to describe the trajectory of erectile function recovery for up to five years (Penson et al., 2005,
2008; Potosky et al., 2004; Wei et al., 2002). In some measures, one item assesses “bother”,

18

which quantifies the degree to which men are upset by the loss of erectile function. A study by
Sanda and colleagues (2008) indicated that up to 50% of men were bothered or very bothered by
the loss of erectile function two years after surgery (Sanda et al., 2008). The inclusion of the
“bother” in quality of life measures, such as the Expanded Prostate Index Composite (Wei et al.,
2000), to ascertain men‟s psychological reaction to erectile dysfunction is a useful first step
toward identifying the man‟s psychological response as an important aspect of the sexual
recovery experience. As a one-item measure, however, it fails to elucidate either the meaning of
loss of erectile function to men or the effect of that loss on men‟s sexual relationships with their
partners.
Over time, qualitative studies designed to further understanding of men‟s experience gave
voice to men‟s concerns. The theme of changed sexual bodies and sexual losses emerged
consistently across the studies. Men‟s sorrow about their sexual relationships with partners
surfaced as a concern in some studies (Bokhour, Clark, Inui, Silliman, & Talcott, 2001; Bokhour,
Powel, & Clark, 2007; Hedestig, Sandman, Tomic, & Widmark, 2005; Katz, 2005, 2007; Navon
& Morag, 2003).
Research on couples has been cross-sectional in nature; it has focused primarily on
couples‟ stress and coping (Northouse, Mood, Montie, et al., 2007; Northouse, Mood,
Schafenacker, et al., 2007; Ptacek, Pierce, & Ptacek, 2007), communication (Boehmer & Clark,
2001; Manne, S., 1999; Manne, S. et al., 2004; Manne, S. et al., 2008), or marital satisfaction
(Couper et al., 2006) after prostate cancer treatment. However, these studies did not focus on
sexual issues per se. Many studies have used a measure of dyadic satisfaction. The Dyadic
Adjustment Scale (DAS) (Sharpley & Cross, 1982) has only one item that asks about agreement

19

or disagreement about sex and, therefore, cannot be considered to be a satisfactory assessment of
the couple‟s sexual relationship.
A few studies have attempted to address sexuality both pre- and post-operatively in
prostate cancer couples. Soloway and colleagues (2005) examined sexual, psychological, and
dyadic functioning of the prostate cancer „couple‟ pre-operatively. The researchers found that
partners were more sexually satisfied in the relationship and endorsed higher sexual function
than patients. Partners also estimated men‟s sexual function to be lower than the men estimated it
themselves. Patients were not asked to rate partners‟ sexual function (Soloway, Soloway, Kim, &
Kava, 2005). These sexual function findings are surprising because many partners of prostate
cancer patients are post-menopausal and have consequent sexual challenges. The study does not
include a discussion of the possibility that men‟s high level of sexual dysfunction (78%) is due to
the negative effect of the cancer diagnosis on sexual function, not an uncommon finding in
clinical practice. A study by Neese and colleagues (2003) looked at motivators and barriers to
help-seeking for sexual problems in a sample of men and partners of those men who consented to
have partners interviewed. They found that partners did not encourage men to seek help for
sexual problems and assumed that sex was over after prostatectomy (Neese, Schover, Klein,
Zippe, & Kupelian, 2003). The study has limitations due to interviewing men and partners
separately rather than as couples, and to developing survey questions about motivators and
barriers to help-seeking for sexual problems without input from patients or partners. Garos and
colleagues (2007) used validated measures to study the effect of partners‟ dyadic satisfaction,
sexual self-esteem, sexual depression (feeling disappointed and discouraged about one‟s sex
life), sexual preoccupation, life satisfaction, and satisfaction with mental health services on men.
They found that partners‟ depression and sexual depression were predictive of men‟s sexual

20

satisfaction (Garos, Kluck, & Aronoff, 2007). The study design did not include assessing the
effect of men‟s factors on female sexual satisfaction, without which there is a danger of “blaming
the partner” for the difficulty with adjustment without accounting for the mutual effect that the
man and the partner have on each other. Finally, two studies described couples‟ sexual recovery
through surveying the men after prostate cancer treatment. Wootten and colleagues (2007) found
that men‟s use of emotion-based coping to solve sexual problems was negatively related to
marital satisfaction, and positively related to mood disturbance (Wootten et al., 2007). The
authors do not account for the possibility that the men may have used emotion-based problemsolving because they were grieving sexual losses. Navon and Morag (2003) reported that after
treatment for advanced prostate cancer, men not only lost sexual function and libido, but also
general vitality, which resulted in their giving up what they saw as masculine family roles such
as management of finances (Navon & Morag, 2003).
An individual experiences sexuality in three domains or dimensions: physiologically,
emotionally or psychologically, and in the relationship with a partner. The extant research is
gradually reflecting the recognition that after prostate cancer treatment, men are affected in all
three domains of sexuality: the body, the psychological response, and the sexual relationship.
The biopsychosocial nature of sexuality has been recognized both by the Surgeon General, David
Satcher (Satcher, 2001) and by the World Health Organization (WHO, 2002). Gradually,
biopsychosocial models of the effect of cancer on the three domains of sexuality are emerging.
Tierney (2008) described the effect of cancer and its treatment on the physiology of sexual
function, the emergence of distress, feelings about changes in body image and uncertainty in
response to those changes, and distress in the relationship that ensues. More recently, Bober &
Sanches-Varela (2012) proposed a biopsychosocial model of the effect of cancer on sexuality

21

that includes cultural values, religious beliefs, and social norms. However, these models are not
based on empirical evidence. In addition, none of the models have a process variable that would
elucidate how couples move from the effects of cancer and its treatment on sexuality toward the
recovery of sexual intimacy after prostate cancer. The role of grief and mourning after prostate
cancer has been offered theoretically, postulating that losses engendered by prostate cancer
treatment must be grieved and mourned before or while sexual recovery begins. An inability to
grieve can interfere with sexual recovery; suppression of feelings about any losses may suppress
libido as well (Wittmann, Foley, & Balon, 2011). A definition of what couples might consider to
constitute a sexual recovery is not specified in the research literature.
Preliminary Model of Couples’ Sexual Recovery
After Surgery for Prostate Cancer
A preliminary model of couples‟ sexual recovery incorporates the biopsychosocial nature
of sexuality, as well as grief and mourning as aspects of the recovery process (Figure 2.1).
Surgery for prostate cancer is conceptualized as a „psychosocial transition‟ (Parkes, 1971), a life
altering event that creates loss (of sexual function and familiar sexuality) and ushers in grief and
mourning as a way of processing the changes and of recovering sexual intimacy by developing a
new sexual intimacy.
The concept of “recovery” is best known in the fields of mental health and substance
abuse. It is defined as “a process of change through which individuals improve their health and
wellness, live a self-directed life and strive to reach their full potential” (Substance Abuse and
Mental Health Services Administration, SAMHSA, 2011). This definition is easily applied to
couples‟ sexual recovery; health, wellness, self-directed life/self-efficacy, and full potential to
the extent possible given sexual losses, are also goals that couples pursue as they try to rebuild

22

Figure 2.1 Preliminary Model of Couples’ Sexual Recovery After Prostate Cancer
Treatment

Urinary
incontinence

Psychosocial
transition

Couple
sexual
relationship

Erectile
dysfunction

Bio
Psycho
social
sexual
losses
usher in
grief and
mourning

bipsychosocial
interventions

Man‟s and
partner‟s
sexual
function

Prostatectomy

Pre-op
Couple
sexual
recovery

their intimate lives after prostate cancer surgery. It is important to note that recovery does not
necessarily imply return to baseline. Rather, recovery includes acceptance of lower sexual
function, use of aids to function sexually if needed, and sexuality not focused on penetrative sex
only. It is described by Reese and colleagues (2010) as more „flexible coping‟ with sexual
concerns (Reese, Keefe, Somers, & Abernethy, 2010).
The aim of this study was to test this model by asking couples about the way in which the
physiologic changes/losses of familiar sexual function and sexual relationship (bio) would be
experienced by the man and partner psychologically (psycho) and result in the couple‟s working
on a new sexual relationship (social). The study was longitudinal in nature; it traced the process
of couples‟ sexual recovery. Although some concepts, such as the role of menopausal changes in
heterosexual partners and men‟s overly optimistic expectations, have been seen as possibly
influential (Shindel, 2005; Symon, 2006; Wittmann, 2011), the goal of this study was to learn
whether couples‟ descriptions of their recovery would confirm these concepts in a „couple‟

23

context empirically. In addition, the study sought to discover new concepts regarding the
challenges of sexual recovery after surgery for prostate cancer, based on the expertise of those
who were actually living the experience in real time.
The following research questions motivated this study:
1. How do couples anticipate, prior to surgery, their sexual recovery from the man‟s loss
of erectile function after surgery for prostate cancer?
2. How do couples describe their experience and cope with sexual changes related to
surgery side-effects three months after surgery in the biopsychosocial domains of
sexuality?
3. Are grief and mourning an aspect of the psychological experience?
The nature of the study was exploratory, with an interest in seeking empirical support for the
previously discussed model. A formal hypothesis is not stated; rather, the model represents an
exploratory hypothesis that is iteratively tested in the methodology used for this study.
Method
The study was based on a re-analysis of interviews collected for a previous study focused
on barriers to couples‟ sexual recovery (Wittmann et al., 2012). Semi-structured interviews
queried couples about anticipation and experience of sexual recovery associated with surgical
treatment of prostate cancer. Interviews were conducted pre-operatively and three months postoperatively. The aim of the original study was to discover pre- and post-operative barriers to
couples‟ sexual recovery. The current study examined the same interview data with a focus on
the couples‟ expectations for sexual recovery pre-operatively and their actual experience after
surgery, with a special interest in the role of grief and mourning in the recovery.
Study Sample

24

In the previous study, a purposive sample of thirty couples was recruited through a
criterion sampling strategy (the criterion being the man‟s diagnosis with prostate cancer) in a
large Midwestern academic medical center between January and August 2010. All couples
participated in the same clinical program offered to men treated with surgery for prostate cancer.
The couples signed an informed consent, and all procedures were reviewed and approved by the
university‟s institutional review board.
Procedure
Pre- and post-operative data from twenty heterosexual couples were available for the data
analysis. Couples had been interviewed at the medical center‟s Cancer Center. Interviews lasted
an hour on average and were carried out by the author. They were digitally recorded and
transcribed. Some examples of questions asked of couples were:
As you are getting ready for surgery, can you describe your thoughts
about it and any concerns?
Are you aware that you will be experiencing side-effects that affect
urinary control and the ability to have erections? What are your
thoughts about those side-effects?
What do you expect will happen to you sexually?
Do you think that the side-effects affect just the man or both of you as a
couple?
Can you tell me about your experience of recovering your sexual
relationship since the surgery?
Where are you from the point of view of bladder control? Have urinary
problems interfered with your efforts to get your sex life back?
How is the experiment going – are you able to try new things sexually?
What have you tried?
Demographic data were surveyed with an eleven-item questionnaire that included
questions about race/ethnicity, education level, income and length of partnership. Comorbidities
25

were ascertained with the use of the Charlson Comorbidities Index (Charlson, Pompei, Ales, &
McKenzie, 1987) which predicts the risk of death from comorbid conditions and is widely used
in the research literature.
Data Analysis
Analytic Induction (Robinson, 1951; Znaniecki, 1934) was used as a method of data analysis.
The Analytic Induction method builds theory from qualitative data. It rests on the examination of
an explanatory hypothesis, while checking each case for conformity to the hypothesis. Any
negative or deviant case can lead to potential rejection or alteration of the hypothesis until a
sufficient number of examined cases leads to the generation of typical characteristics of a
phenomenon, and hence, a theory that explains the phenomenon. This research examined a
preliminary biopsychosocial model of couples‟ sexual recovery after surgery for prostate cancer,
with grief as a process variable. Interviews from the „Barriers‟ study were then analyzed, using
the research questions of the current study. Initial open codes stemmed from identifying word
groupings that represented concepts reflective of couples‟ experience of sexual recovery after
prostate cancer surgery. In the course of the analytic process, each case was re-examined in the
light of previous findings. The next step in the analysis was grouping related codes into
categories, based on the preliminary model. For example, when people spoke about no longer
having erections or having sex rarely, these statements were coded as bio and social sexual
losses, later categorized into overall sexual losses. The themes were then further categorized at a
higher conceptual level to identify common experiences of sexual recovery.

For example,

expectations and worries were categorized as „uncertainty‟. Finally, the categories were
organized into a narrative based on the biopsychosocial paradigm, with special reference to the
role of loss and grief in couples‟ adaptation to loss of sexual function. The author remained open

26

to new categories or concepts beyond the study‟s theoretical orientation in order to discover
cases that did not fit into the hypothesized model and to find potential new characteristics that
could be equally significant, or perhaps even more significant, than the ones hypothesized. The
model was then revised based on the findings. NVivo software (NVivo 9) was used to complete
qualitative analysis.
Assurance of Data Quality
Several factors secured the trustworthiness of the data and the analysis process during the
original study; these included the author‟s 5-year clinical experience (prolonged exposure),
checking transcripts randomly for accuracy, memoing after each interview, keeping an audit trail
throughout the „Barriers‟ study, making reflexive statements throughout the project, and
consensus of the analytic team. During the dissertation phase, quality of data was secured
through regular consultation with the qualitative research mentor, keeping an audit trail
throughout the project, memoing, and making reflexive statements throughout the project.
Results
Sample Characteristics
The demographic characteristics of the sample are described in Table 2.1. The mean age
of the men was 60.2 (SD = 6.0). The mean age of partners was 57.6 (SD = 6.9). The couples had
been partnered, on average, more than 30 years. Seventy percent of the men and 50% of partners
were educated beyond high school. Mode family income was 90 K (30K-90K). The patients‟
characteristics reveal a very homogeneous sample in terms of ethnicity, education, and income.
These couples were in long-term relationships although patients and partners recall the length
differently as seen in the differences in mean scores.

27

Table 2.1 Sample Demographic Characteristics
________________________________________________________________________
Characteristic
N
%
Ethnicity
White
Patient
19
95
Partner
19
95
Hispanic
Patient
0
0
Partner
1
4
Chinese American
Patient
1
4
Partner
0
0
Completed education beyond HS
Patient
14
70
Partner
10
50
________________________________________________________________________
Mean
SD
________________________________________________________________________
Age at baseline
Patient
60.2
6.0
Partner
57.6
6.9
Length of relationship (years)
Patient
31.5
7.7
Partner
35.0
8.1
________________________________________________________________________
Mode
Range
________________________________________________________________________
Income
Patient and Partner
> $90,000
<$30,000-$90,000

Patients‟ clinical characteristics (Table 2.2) show a relatively healthy sample of patients,
mostly with localized prostate cancer. Pathological findings revealed a more aggressive prostate
cancer in two patients.

Surgery for those two patients necessitated more damage to their

28

neurovascular bundles because of the extent of their cancer, auguring a less successful recovery
of erections. All men in this sample could anticipate long-term survival.
Although they were not formally assessed regarding mental health and some participants
were on antidepressants, none of them suffered from identifiable mental illness or abused
substances. All were functioning sufficiently well psychologically to fulfill their roles in their
Table 2.2 Patients’ Clinical Characteristics
______________________________________________________________
Characteristic
n
%
______________________________________________________________
Gleason Sum
≤6
4
20
7
13
65
≥ 8
3
14
Clinical Stage
T1c
17
85
T2a
2
10
T2b
1
0.5
Pathological Stage
T2a
5
25
T2b
11
55
T3a
3
14
T3b
1
0.5
Nerve Sparing
Bilateral

18

90

Partial

2

10

None

0

0

______________________________________________________________
Charlson Co-morbidity
0
0-4
Score (Median/Range)
_______________________________________________________________

jobs and in their relationships. The couples described themselves as coping well despite worry
about the cancer and surgery.
Interview Findings

29

Couples‟ pre- and post-operative experiences are described below. They reflect and
extend the framework of the preliminary model of couples‟ sexual recovery. It is important to
note that the study baseline is the pre-operative, but post-diagnosis period. As a result, couples
were already affected by the fact that the man was diagnosed with cancer; cancer concerns
influenced their attitude to sexual recovery. After the surgery, cancer concerns were minimal,
while preoccupation with the side-effects of surgery was much more in the forefront.
Characteristics of the pre-operative experience.
The themes that emerged were reflective of the couples‟ stage in the life cycle, of the
many years that these couples had spent together, and of the confidence that most felt, in spite of
the challenges and worries about this experience, that they would come out relatively intact.
These themes can be described within the biopsychosocial paradigm. The themes are described
in greater detail below and illustrative quotes from the couples are summarized in Table 2.3.
Bio: Already changed sexual function and relationships.
Although all but one couple (95%) were sexually active to some degree, frequency had
decreased in the years prior to the diagnosis of prostate cancer, and 60% of couples reported that
sex was not their highest priority. Seventy percent of men reported interest in sex, but declining
erectile function. Menopause had led some female partners (50%) to be less interested in sex.
These changes were due to aging and co-morbidities. Thirty percent of couples reported desire
discrepancy.
Psycho: Worry and anticipatory grief, high expectations of sexual outcomes and ability
to cope, dislike of sexual aids and recovery activities.

30

Table 2.3 Patients’ and Partners’ Statements in Anticipation of Surgery

Patient

Partner

Bio
Already changed sexual “. . . I have difficulty maintaining an erection
function and relationship
through the full sexual activity.”
Psycho
Worry and anticipatory grief “I mean I think I have some feelings of grief in
regard to, um, the sexual aspect because I think we
have a good sexual like I think that it‟s an important
part of our relationship or bonding . . . “
High expectations of sexual Patient: “I‟m so comfortable with being here (in the
outcomes and of ability to medical center), . . . I am just very, very confident
cope
that when I walk out of here I‟m going to be fine.”

“. . . dried up and no urges“
“I don‟t think , as much as I love or care for
my husband, I‟d never change his diapers
and wipe his butt”
“I don‟t think of it as being a year, I think of
it as being less than that cause I think of him
as being a vibrant, healthy, normal person . .
.“

Patient: “It won‟t diminish me, erectile function
doesn‟t define me.”
Dislike of sexual recovery “ . ..yeah as of now, I‟m still of the optimistic “It‟s scary for me (sexual experimentation) .
aids
and
sexual thinking that we‟re not going to need that, it would I‟m very conventional , because it‟s
experimentation
be my preference not to have to do that (use aids).”
different, it would be different. . . . “
Social
Sex is important to us
“Well, I think we both agree that we are not as Patient: “I‟m anticipating . . . um. . .um . . . “
interested as we used to be but . . . It‟s still a part of Partner: “trying new things . . . chuckle,
our lives and we still enjoy it and . . .we wouldn‟t laugh) Patient: “. . .phase II, yeah, trying
like to lose it if we didn‟t have to.”
new things . . . “
Couples‟ sense of self“. . . because I think we have a terrific
efficacy in coping with
relationship, we have so much that we do
sexual recovery
together, we work together.”

31

All couples expressed a variety of worries as they anticipated surgery. The worries
focused on the possibility that the surgery would not eradicate the cancer (65%), the danger of
surgery itself (65%), urinary incontinence (80%), and the effect of surgery on sexual function
(60%). Many couples did not directly speak about grief, but nearly all (95%) had feelings about
potential losses.
While citing their awareness of nerve damage and a period of recovery, 90% of the
couples expected the men to more or less return to pre-operative function. They based their
expectation on the quality of care they were receiving, healthy living habits, hard work on penile
rehabilitation, or simply on the opportunity to address sexuality after prostate cancer surgery. All
the men said that erection loss would not affect their identity as men. In this manner, couples
hoped that they would be relatively unaffected by the surgery.
Despite their eagerness to work actively on sexual recovery, 85% of couples expressed
dislike of one or more of the rehabilitation activities: use of sexual aids, sexual experimentation,
talking about sex, and masturbation. They hoped and expected that they would not have to use
erectile aids.
Social: Sex is important to us, we can work hard to recover it, the partner will have
an important role in the recovery.
Forty-five percent of the couples described sex as an important part of their relationship,
and 90% of couples were willing to work on some aspects of sexual recovery, such as accepting
recommended procedures, accepting the side-effects of medications, or the need to experiment
sexually in the absence of easily obtained erections and intercourse to regain sexual intimacy. In
some cases, couples saw the post-prostatectomy focus on sexuality as an opportunity to improve
sexual intimacy, even to re-kindle an already abandoned sexual relationship.

32

Although couples evidenced vulnerabilities, such as the men‟s tendency to be impatient
and problems within the relationship, they prided themselves on strengths they had developed
through longevity and through successfully navigating previous past challenges. They expressed
confidence in their ability to cope well with sexual problems after prostatectomy, no matter what
the outcome. At the same time, they did not plan; 80% of the couples postponed thinking about
the recovery.
Without exception (100%), partners spoke about becoming protective during the preoperative period and expected to continue it after surgery. They saw themselves as being
supportive, but also as having to enforce adherence to rehabilitation, manage the men‟s
frustration, and in some cases, to provide requisite sexual stimulation for the men as a part of the
recovery. Men accepted this role; some men explicitly relied on the partners to know them better
than they knew themselves and regarded them as arbiters of decisions about their medical and
emotional needs.
Characteristics of the Post-Operative Experience
Table 2.4 presents the post-operative themes of the interviews. All couples had to face
the man‟s loss of erectile function and change in their sexual relationships. Sixty-percent of
couples were now sexually active as opposed to the 95% that were sexually active before
surgery. All acknowledged the challenge, especially the fact that sex became “work”.
Bio: Functional sexual losses and sexuality as it is now.
In addition to erectile loss and loss of the ejaculate, some men reported loss of orgasmic
experience (50% had satisfactory orgasms), loss of desire, and unhappiness due to a need for
longer stimulation. Menopausal symptoms continued to play a role in the partners‟ low sexual
interest or discomfort with intercourse. On the other hand, 75% of the men recovered some

33

tumescence and this encouraged them. Nearly half of the couples were not sexually active, and
an equal number reported decreased frequency in sexual activity. Seventy-five percent of couples
reported feeling unhappy about the loss of spontaneity in sex or some aspect of familiar sexual
interactions. Sex was more work now and this was frustrating to the couples.
Nearly a third of the men had some urinary incontinence that was interfering with sexual
activity. Fifty-percent of the men had satisfactory orgasms, and some couples felt that work on
sexual recovery brought them closer together. The participants spoke about the difference that
the man‟s loss of erectile function made to their sexual relationship. A few partners saw that a
smaller penis affected their ability to be orgasmic with intercourse. Even where erectile function
was returning, worry about performance, satisfying the partner, the partner‟s sexual role, and
self-consciousness led to decreased frequency of sexual interactions.
Psycho: Ambiguous loss and grief.
Feelings associated with grief were reported by 90% of the couples. The emotion
experienced by nearly half of the men was frustration, sometimes hopelessness. While the
majority of couples had said, pre-operatively, that the men were not defined by their erectile
function, 75% of the men experienced a feeling of loss of manhood, 50% of the men rued a loss
of sexual performance, and 25% said they lost sexual confidence. Anxiety about performance
dominated their thinking now. They were not sure how definitive their losses would be in the
long run. The men who had more extensive nerve damage and were not recovering tumescence
or libido were particularly upset. Some partners also felt frustrated. However, only about 10% of
the couples felt either hopeless or regretful about their treatment decision. Worry about cancer
spread

was

almost

absent,

but

worry about

34

urinary incontinence

(75%),

sexual

Table 2.4 Patients’ and Partners’ Statements 3-4 Months After Surgery

Theme
Bio
Functional
losses

Patient
sexual “ . . and plus my orgasms are diminished
I can‟t get an erection and I can‟t have an orgasm.”

Sexuality now

Psycho
Ambiguous
and grief

Partner

“I also feel like reaching an orgasm is just like, oh
really hard for me (due to menopause). And it was
hard for me before. But now with all this apparatus
and everything else we are bringing in and this
Astroglide and this and that and all this
paraphernalia, it just doesn‟t seem worth it to me.”
” There is a response but it‟s not, probably not what “Well, that seems like another apparatus that it‟s like
I would say is enough for penetration.”
so much work, you know. . .”

loss “It‟s a part of my being that has changed . . . this is “I know. I like threw the vibrator across the bed. I
something that is life changing.”
am sick of this. Sick of it. Sick of it.”

Social
Couples‟ coping - “ . . . In that sense the quality is improved. And I
positive
think you focus more on your partner than you did in
the past.”
Couples‟ coping - “ . . . the electric pump device I find sort of
negative
alienating it‟s you know it‟s mechanical and rigid
and kind of aggressive and I mean it certainly works
but . . . you know it‟s not very appealing . . .”
Partner‟s role in “ . .she‟s always act like I‟m the focus of, of her life
sexual recovery
and our relationship and she knows what I need and
so she‟s going to give that and she, she knows that I
need someone to lean on someone to be strong while
I‟m having my fearful time that that‟s the role that‟s
going play I would count on her to do that .”
35

“I think it‟s been pleasant, I mean it‟s now there‟s
stages you can‟t achieve, but it‟s not diminished our
being intimate or being physical. . . . “
“I think the therapy is up to him because it is not
something that I don‟t think he wants me to
participate in.”
“ . . .he‟s doing great and it is going great for me,
you know, but I am feeling more guilt because I feel
that I should be initiating and I just can‟t pull myself
to do that because the motivation isn‟t there, yeah,
and it should be cause he needs it.”

performance (50%), and partner sexual satisfaction (50%) was dominant. The feeling of
hardship of sexual recovery was clear in all the couples, even those who said that they were
coping well because sex was now intentional, not spontaneous. One patient noted that he was
not grieving sexual losses; this represented a negative case, a case that did not conform to the
preliminary model. Upon further exploration, he explained that aging had already robbed him of
his love of athletics; losing sexual function was less significant. For this man, the loss of sexual
function opened up grief about earlier, more meaningful functional losses.
Social: Couples’ coping and the role of the partner.
After surgery, couples reported that pleasure required work and longer stimulation, that
sometimes the man‟s body had a different sensitivity, and that aspects of sexuality were missing.
Although 50% of the couples continued to feel that their sexual relationship was important to
them, sexuality was now characterized as being „different‟. Couples used strategies that appeared
to help them in their recovery, as well as strategies that made coping with their feelings of loss
and frustration more difficult. In this context, coping is defined as attitudes and behaviors in
which couples engaged in response to the man‟s sexual function and altered sexual relationships.
Coping strategies that helped the recovery process.
These included being optimistic, using humor, reframing the experience in the larger
context of beating cancer, invoking the strength of the relationship, acceptance of low sexual
function, affection, patience, communication about sexual changes, the man‟s participation in
rehabilitation activities, the partner‟s interest in sex, regular sexual activity, and willingness to
experiment sexually and use sexual aids.

36

Coping strategies that made recovery less successful.
For couples in this sample, these included feeling hopeless, difficulty accepting sexual
losses, lack of communication about the losses of emotional intimacy, the men‟s worry about
sexual performance and urinary incontinence, and the partner‟s low interest in sex. Dislike of
sexual aids hindered the work on sexual recovery and led to avoidance. A significant loss of
sexual function (including loss of desire, erection, or orgasm) led to loss of sexual intimacy, even
in couples whose relationships were otherwise harmonious and mutually supportive.
As they anticipated, partners took on encouraging patients to engage in rehabilitation
activities, reminding them about appointments and medications, and managing their feelings of
frustration with reassurance. At times, they felt they had to be strong for the men, and men
appeared to rely on their partners for strength. Partners had their own feelings about their role,
particularly about their expectation that they should be sexually available during the patients‟
recovery. The demands of the partner role remained mysterious even to the partners themselves.
Couples’ definition of sexual recovery.
Couples defined sexual recovery in different ways, sometimes thinking of it as fully recovered
erection, at other times wishing to simply be sexually engaged, no matter what aids they might
have to use. One couple defined sexual recovery very eloquently, in a way that could probably
speak for all the couples who were recovering their sexual relationships after prostatectomy. This
couple described a longing for being able to be unselfconscious during sexual activity again. For
most couples, loss of spontaneity and self-consciousness were interfering with sexual pleasure
and intimacy.
Discussion

37

The goals of this study were twofold: one was to discover whether couples‟ reflections on
their anticipation of and experience of sexual recovery after prostate cancer surgery would
provide empirical evidence to support a hypothesized biopsychosocial model of couples‟ sexual
recovery after surgery for prostate cancer. The other was to learn whether grief was a process in
this model through which couples moved toward recovering their sexual intimacy. The findings
of this study support the presence of both aspects of the model. However, as represented in
Figure 2.2, couples experience not one, but two psychosocial transitions: cancer diagnosis is the
first life-altering event they must face; the loss of function after surgery is the second. Sexual
recovery after prostate cancer surgery is a complex process governed by many influential factors.
Some are pre-existing; others emerge at the time of diagnosis and/or after surgery. Couples are
affected physiologically, psychologically, and in their sexual relationship. They are also required
to cope in all three domains. They do it through the process of grief and mourning. It should be
noted that, while not all participants endorsed the language of „grief and mourning‟, all expressed
emotions or actions that are commonly associated with grief, such as sadness, anger, frustration,
helplessness, and giving up.
Couples’ Anticipation of Sexual Recovery Before Surgery
Couples said that their sexual relationships were important to them, even though they
had already experienced loss of sexual function prior to surgery, and sex was not always the
highest priority. They expressed confidence about sexual function outcomes and about their
ability to overcome adversity. Patients‟ high expectations of return of sexual function had been
previously described in the literature (Symon et al., 2006; Wittmann et al., 2011). In both these
studies, patients‟ expectations did not match the actual outcomes. In most cases, patients were

38

Figure 2.2 Revised Model of Couples’ Sexual Recovery After Surgery for Prostate Cancer

Coping =
defense
against loss

Sexual
recovery

Sexual
losses
and
other
clinical
factors

Selfdefeating
coping

No or poor
sexual
recovery

Pre-existing
strengths
and
vulnerabilities

Ambiguous
loss

Surgery=PS transition

Pre-existing
developmental
sexual losses

Diagnosis=PS transition

Positive
coping

Pre-existing developmental sexual losses: erectile dysfunction, post-menopausal symptoms.
Pre-existing strengths: long-term relationships, success coping with challenges.
Pre-existing vulnerabilities: relationship problems, stressors, dislike of unspontaneous sex.
Post-diagnosis coping: anticipatory grief, faith in surgeon skill and couple strengths,
willingness to work hard on recovery, minimization of nerve damage, belief that using
sexual aids will be unnecessary.
Post-surgery positive coping: on-going sexual activity, acceptance of sexual losses,
normal grief and mourning, use of sexual aids, flexible sexuality, partner‟s positive
interest in sex regardless of menopause.
Post-surgery self-defeating coping: no or infrequent sexual activity, relationship
problems, inability to grieve sexual losses, stressors, inflexible sexuality, partner‟s low
or no interest sex regardless of menopause.

hoping for a better recovery than they obtained. In our sample, not only patients, but partners
were equally optimistic, and couples did not think it necessary to anticipate the recovery. In this
way, couples participated in mutual reinforcement of high expectations.
Of concern is the fact that these couples based their expectations on factors which have
only some influence on the actual outcome, i.e., the expertise of providers, their own healthy
39

living, pre-existing sexual function (not always optimal), and their willingness to work hard on
recovery as a couple. They relied, in their thinking, on their self-efficacy and the efficacy of the
providers, without sufficiently taking into account the physiologic damage that occurs during
even the most skilled surgery. Thus, they may have unwittingly positioned themselves to not
only experience a greater than expected loss of sexual function and familiar sexuality, but also
loss of self-efficacy during the recovery process.
There was a notable incongruence between couples‟ stated willingness to work on sexual
recovery and to experiment sexually on the one hand, and their dislike of devices and
medications that they would have to use during the recovery period on the other. An explanation
may lie in the already mentioned high expectations with which couples approached the surgery
and recovery, and in their decision not to anticipate the recovery period: if erections returned to
baseline, they would not need to use the medications or devices and deal with the emotions
associated with them. This approach is consistent with the first stage of grief when the
acknowledgement of losses is resisted, especially when the loss is ambiguous (Boss, 1999).
Couples’ Experience of Sexual Recovery
After surgery, couples reported losses in all three domains of sexuality. With respect to
physiology, all but one man experienced erectile dysfunction after surgery. Some experienced
other losses, such as poor penile sensitivity, inability to reach orgasm, and loss of desire for sex.
It is important to note that clinical recovery parallels sexual recovery and is influential. In these
couples, ongoing urinary incontinence created problems for sexual recovery. Additionally, while
this was a relatively healthy sample, prostate cancer survivors and partners are generally older,
and other illnesses and their treatment can have a significant impact on sexual recovery.

40

All couples used some positive and some self-defeating strategies to cope with the
changes in their sexual relationships. Couples who seemed to be likely to move forward more
successfully were those that had some recovery of erectile function; could grieve, share, and
accept the loss; could collaborate openly on sexual recovery, and could use aids to sexual
functioning. They were able to engage in „flexible‟ sexual interactions, as posited by Reese and
colleagues (Reese, Keefe, Somers, & Abernethy, 2010). These couples remained engaged in
sexual activity on an on-going basis, without waiting for the spontaneity of a hormonal surge.
This intentional approach, relevant to men with post-prostatectomy erectile dysfunction, is well
represented by Basson‟s model of female sexual arousal in which the woman subjectively
decides to engage sexually, based on her closeness to her partner and her ability to focus away
from environmental distractions (Basson et al., 2004).
Regardless of post-menopausal sexual function, couples with partners who were
interested in sexual recovery were poised for a more successful recovery. This is an important
finding that contrasts with previous research suggesting that a man‟s sexual recovery after
prostatectomy is dependent on the female partner‟s sexual function (Moskovic et al., 2010;
Shindel, Quayle, Yan, Husain, & Naughton, 2005). It suggests that relationship factors
(including sexual relationship factors), not biological ones, are more influential in couples‟
ability to recover sexual intimacy after prostate cancer surgery.
Couples who did not cope as well tended to have pre-existing relationship problems, had
partners who were less interested in sex, were more pessimistic, communicated poorly, and
disliked aids to sexual functioning. They also had more stressors in their lives. In two cases,
couples with very good pre-existing relationships were greatly affected by the men‟s significant
sexual losses due to more nerve damage. In those couples, the men were unable to grieve

41

effectively and move beyond those losses at the time of the 3-month interview, and the couples
experienced a loss of sexual and emotional intimacy.
Grief
Grief proved to be a salient aspect of the experience of coping with sexual losses,
although not all participants called it by its name. In the pre-operative period, couples
experienced anticipatory grief, but also found it difficult to absorb what was coming. After
surgery, couples often endorsed individual feelings such as frustration, sadness, and anger
without fully associating them with the grief process. Two men gave up on sex with profound
sadness and appeared unable to work through their feelings of loss. To the degree that couples
communicated about their sexuality and sexual recovery, they did communicate about the losses.
In those couples where losses were such that they overwhelmed the men, feelings of loss and
grief were not shared.
Recovery of sexual intimacy was important to these couples. Some defined it in terms of
return to sexual activity with or without sexual aids. The most poignant, and probably most apt
definition was a return to being unselfconscious during sexual activity. As was anticipated,
sexual recovery did not mean a return to baseline. Acceptance of changed sexual function and of
changed sexual relationship through the process of individual and shared grief and mourning led
to more flexibility in sexual expression for those couples who recovered sexual intimacy.
Study Strengths and Limitations
The study has several strengths. The large sample allowed for theoretical saturation.
Studying couples from the pre-operative to the post-operative stage gives a new and unique
insight into the process of recovery. The qualitative nature of the study has given couples a voice
with which to educate clinicians about their experiences and concerns. The study has identified

42

grief as a necessary aspect of couples‟ recovery after prostate cancer surgery and provides a
biopsychosocial model of sexual recovery after prostate cancer surgery.
There are several limitations. The study is a pilot that allows for transferability of
findings, but not for generalizability. As the post-operative interviews occurred three months
after surgery, the physiologic recovery of erectile function was only just beginning. A recent
study suggests that early recovery predicts later outcomes (Abdollah et al., 2012), but the
accepted wisdom in research and clinical practice recognizes a process of recovery that can last
two years (Miller et al., 2005). The study sample was very narrow in terms of diversity of ethnic,
economic, and sexual orientation characteristics. It may have been biased in the sense that
couples chose to be in the study because they were interested in sexual recovery.
Implications for Social Work Practice
From a clinical perspective, we have to recognize that couples have a variety of responses to
the ways in which prostatectomy disrupts their intimate lives. Some may accept the loss and
replace sex with other meaningful couple activities that they associate with aging and
companionship. These couples were not present in our study, likely because they would not have
chosen to participate in a study on couples‟ sexuality. Other couples will work on recovery and
achieve a new intimacy. But the more vulnerable couples, those ostensibly interested in sexual
recovery but unable to proceed, will need to be identified early and given assistance. In fact,
intervention research suggests that couples who have more problems benefit most from
interventions (Manne et al., 2011; Molton et al., 2008; Schover et al., 2011).
Urologic research and typical urologic care for prostatectomy patients focus on erection
recovery. The offer of penile rehabilitation, while critical from a physiologic point of view,
collides with couples‟ capacity for dealing with sexual losses individually and as a couple. The

43

need to address loss, grief, and mourning, while touched upon by some authors, has been largely
neglected in the psycho-social literature on prostate cancer. The nearest effort in this direction is
the attention to restructuring negative attitudes about sexual dysfunction and aids to erectile
function that has been an aspect of some interventions (Manne, et al., 2011; Schover, et al.,
2011). Our study supports the notion that grief begins prior to an anticipated loss. When the loss
is ambiguous and the outcome is uncertain, there is room to postpone coping and to reach for
overly optimistic expectations. Many of the couples in this study did not use the language of
grief, only emotions associated with it. It is therefore important to provide education about loss
and grief pre-operatively to help couples anticipate their responses to sexual losses and
normalize them. Since grief about sexual losses is experienced both by the men and their
partners, partners need equal assistance in this area. Couples in this study reinforced each other‟s
high optimism and relied on psychological and couple strengths to reassure themselves about
coping with sexual changes after prostatectomy. They did not factor in sufficiently the biological
effects of the surgery. They were thus poised for deep disappointment and a sense of
powerlessness when their outcomes do not match their expectations. Faced with the loss of
familiar sexual interaction and self-efficacy, some couples may become paralyzed.
A treatment approach that includes the biopsychosocial domains simultaneously is
critical. In the physiologic domain, penile rehabilitation is already offered in many urologic
practices as a way of mitigating loss of erectile function. Patients‟ and partners‟ underestimation
of the impact of the biological damage to their neurovascular bundles can be best addressed by
urologists pre-operatively and reinforced throughout post-operative care. Recognition of the role
of biology can help patients and partners feel less responsible for the slow speed of recovery
despite their best efforts.

44

Psychological interventions should address both the man‟s and the partner‟s losses and
help couples face and work through grief and mourning. Men may need to be helped to accept
their vulnerability and their grief as well as support without feeling diminished (Wall &
Kristjanson, 2005). Partners‟ grief about sexual losses needs to be viewed as legitimate. When
grief emerges, as is normally the case after a loss, dealing with sexual losses for some couples
brings up other losses, sexual or otherwise, in their relationships; they may need an opportunity
for more intensive, longer-term sex therapy to work through them. Social workers are trained to
understand human development and losses that are commonly experienced during the life cycle.
Their clinical training includes attentiveness to grief and mourning, particularly in medical social
work where loss of function is a usual aspect of adjustment to chronic illness. Including sexual
losses in their clinical purview would be critical in the psycho-social care of prostate cancer
patients and their partners.
In the social or relationship domain, comfortable communication enhances the process of
mourning and recovery. Some couples have to learn this as a new skill not in their repertoire. In
addition to communication, couples need guidance and support for their post-prostatectomy
sexual activity. Acceptance of non-penetrative sex during the initial phases, widening of sexual
repertoire, and sexual experimentation can be encouraged. The partner‟s role in the sexual
recovery needs to be studied further so that appropriate support can be provided. Social workers
can help patients and partners understand the importance of working on sexual recovery and
provide a referral for a consultation with a certified sex therapist to help couples work on the
relationship aspects of the sexual recovery. Clinical experience suggests that, for many couples,
expert support need not be intensive or long term, but its availability can build on couples‟ selfefficacy and help them restore sexual intimacy after prostate cancer surgery.

45

Future Research
The findings of this study, which describe the effect of surgery for prostate cancer on
couples‟ sexual recovery, should be confirmed with a larger and more diverse sample, using
validated measures of sexual function, complicated mourning, self-efficacy, and couple coping.
Couple coping will require a more substantive definition. The development of a brief screening
measure that addresses potential barriers to sexual recovery would help identify couples who will
need assistance in sexual recovery. The development and evaluation of interventions that address
all three domains of sexuality as well as the process of grief and mourning are needed in order to
maximize couples‟ post-prostatectomy sexual recovery. It would be important to learn which
couples would most benefit from such interventions. Couples should be followed for up to two
years so that the recovery process can be observed within a more meaningful timeframe.
Conclusion
Surgery for prostate cancer affects the three domains of sexuality, i.e., biological,
psychological, and social or relational. Couples‟ sexual recovery depends on their ability and
willingness to work in all three domains. Penile rehabilitation helps with physiologic recovery,
while grief and mourning help men and partners accept sexual losses. Communication, sexual
experimentation, and collaboration are critical to the couples‟ ability to restore sexual intimacy.
If this model can be shown to be valid in studies with large samples, patients and their partners
should be alerted to the multifactorial nature of sexual recovery after prostate cancer surgery.
Interventions that address all three domains should be developed and tested.

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CHAPTER III
EXPLORING THE ROLE OF THE PARTNER IN COUPLES’ SEXUAL RECOVERY
AFTER SURGERY FOR PROSTATE CANCER
Abstract
Background: Heterosexual partners of patients with prostate cancer have been shown to be
distressed, sometimes more than the patients themselves. Their reactions to prostate cancer
revealed feelings of depression in response to the loss of emotional intimacy and sexuality.
Partners‟ sexuality has been studied primarily as a factor in men‟s recovery of erectile function,
however, patients‟ and partners‟ perspective on the role of the partner in the sexual recovery has
not been studied empirically. The purpose of the study was to elucidate the role of the partner in
the couple‟s sexual recovery from both the patient‟s and the partner‟s point of view. Method:
Ten men and nine partners were interviewed separately about the role of the partner. Grounded
Theory was the analytic method and NVivo software aided the analysis. Results: Men and
partners agreed on many aspects of the role. They perceived the partner‟s own interest in sex as
being an important positive factor in the recovery. Men did not have a sense of the partner‟s
sexual needs or needs for support. Partners expressed both kinds of needs, but were unsure of
what kind of help they needed and whether they would accept help. They expressed eagerness to
fulfill their role, but also uncertainty and frustration in their role. Conclusion: Partners‟
importance in the recovery is recognized by both men and partners and should be acknowledged
in usual care for men with prostate cancer. Partners‟ needs should be assessed and support
provided in the context of couples‟ sexual recovery after surgery for prostate cancer.
Background

47

Although caregiver involvement and caregiver distress have been found to be inextricable
components of the cancer experience, partners‟ role in couples‟ sexual recovery after surgery for
prostate cancer has not been studied to date (Given & Northouse, 2011; Palapattu et al., 2004). In
prostate cancer, partners‟ dual role as caregivers and sexual partners may pose unique
challenges.
Much of the early literature focuses on partner distress, anxiety, and depression. Couper
and colleagues (2006a) reviewed the literature on partners in prostate cancer and found them to
be more distressed than the men; in a study that followed men and partners for a year, the authors
discovered that men become distressed later than partners (Couper et al., 2006b). Several studies
concluded that partners had significant psychosocial morbidity. Cliff & MacDonagh (2000)
measured depression and anxiety in patients and partners, using the Hospital Anxiety and
Depression Scale (HADS) (Carroll, Kathol, Noyes, Wald, & Clamon, 1993) and a measure of
psychosocial morbidity in prostate cancer validated by the authors in previous research. They
found that 49.6% of partners experienced marginal or definite anxiety or depression as measured
by the HADS, while only 20.7% of patients' anxiety could be similarly described. The HADS
scores were highly correlated with worry related to cancer and some social anxiety (Cliff &
MacDonagh, 2000). A recent study by Thomas (2012) and colleagues compared 19 partners of
men with prostate cancer with 26 partners of men who were healthy. They assessed the
participants with the Structured Clinical Interview for DSM IV (Spitzer, 1990) and concluded
that partners of men with prostate cancer, unlike healthy controls, suffered from sub-threshold
post-traumatic stress disorder (Thomas et al., 2012). This research suggests that partners‟
emotional adjustment to the threat of cancer and to the sequelae of prostate cancer is a significant
component of the couple‟s adjustment to the prostate cancer experience overall.

48

Partners‟ concerns and role in men‟s sexual outcomes are addressed in some research that
focuses on quality of life of men who have prostate cancer. Sanda and colleagues (2008), in a
study of men who chose several different treatment options for prostate cancer, found that up to
44% of female partners of men who chose surgery were unhappy with the men‟s sexual
outcomes (Sanda et al., 2008). Garos, Kluck, and Aronoff (2007), in a postal survey, evaluated
general depression, sexual depression (depression about sexual relationships), anxiety, sexual
function, and relationship satisfaction of 77 prostate cancer patients and 57 partners who were on
average more than two years post-diagnosis and treatment. They found that while there were
many similar outcomes for patients and partners, partners evidenced greater depression and
greater sexual depression. Partners' depression and unhappiness with their sex lives were also
significant predictors of the patients' depression and satisfaction with their sex lives (Garos,
Kluck, & Aronoff, 2007). Since this was a cross-sectional study, a serious limitation of the study
was the inability to assess changes in the relationships based on the surgery outcomes. Moskovic
and colleagues (2010) had pre-operative sexual function data on 27 heterosexual couples. After
surgery, patients who were unable to obtain erections were encouraged to engage in various
forms of penile rehabilitation. The researchers found that the pre-operative sexual function of the
female partner had a significant effect on the man‟s compliance with penile rehabilitation
activities (Moskovic et al., 2010). The relationship aspects, including sexual relationship aspects,
of the patient‟s erectile recovery and compliance with penile rehabilitation were not explored. Of
note is the fact that in the two later studies, female partners‟ sexuality was conceptualized as a
variable that was influential in men‟s erectile recovery without attention to the role of male
sexuality or sexual dysfunction in the female partners‟ sexual satisfaction or sexual depression.
Only one study focused on the female partners‟ sexual concerns; Schover and colleagues (2002)

49

interviewed men and partners during the first post-treatment year and found that the women were
concerned about their post-menopausal symptoms (Schover et al., 2002a).
Research focused specifically on partners has been exploratory. In a qualitative study by
Bruun and colleagues (2011), five partners of men diagnosed with “incurable” prostate cancer
described their experience as entailing: (a) aspects of loneliness which included men‟s silence
about their feelings about their cancer and partners‟ self-imposed decision to live with the
silence; (b) informal care which described the partners‟ devotion to physical care of their male
partners, sometimes at the cost of self-care; and (c) acceptance of relationships which were based
on affection. Sexuality is not mentioned. Partners coped by turning to family support, mutual
love with their partners based on physical care, finding meaning in that care, and faith. The
researchers recommended recognizing these issues, particularly partners‟ loneliness, so that
partners could be supported emotionally (Bruun, Pedersen, Osther, & Wagner, 2011). Although
this is a study of partners of men coping with a terminal illness, the lack of attention to sexuality
is surprising. Sexual expression can provide a sense of connection and comfort during advanced
stages of illness, as described by Blagbrough (2010) in her study of patients‟ sexual needs during
palliative care. It is likely that treatment and worry about the cancer would have affected men‟s
and partners‟ sexual relationships in a way that would have been meaningful at least to some of
the partners. Tanner and colleagues (2011) asked two open-ended questions of partners‟ during
eight years of follow-up: How has prostate cancer affected your life? Is there anything else you‟d
like to add? One hundred and thirteen partners responded and data analysis revealed three
themes: (a) coping with life in the face of cancer which included feeling overwhelmed with
many stressors, yet grateful for the good care the men were receiving; (b) encountering difficult
emotions which included worry, feeling helpless, scared and sad; and (c) learning to live with

50

relationship changes. The participants acknowledged anger about losing their sexual
relationships, lack of success in recovering them, and uncertainty about how to cope with an
emotionally vulnerable partner. In these circumstances, partners reported difficulty
communicating, primarily by the male partner. In their discussion, the authors place the partners‟
“difficult emotions” into the context of other literature that has found partners to be distressed,
depressed, and evidencing psychosocial morbidity. The discussion appears to view emotions
typically associated with the grief process, such as distress, anxiety, despair, and hopelessness, as
evidence of declining mental health. The authors recommend listening support and referral to
other healthcare providers. Only one study explores partners‟ sexual needs in couples coping
with a variety of cancers when penetrative sex is no longer an option. The ability to negotiate
greater flexibility in defining sexuality beyond penetrative sex and the ability to communicate
was critical in couples‟ ability to maintain a sexual relationship (Gilbert, Ussher, & Perz, 2008).
There is, in the extant literature, therefore, recognition that women tend to be first responders to
the distress about cancer, and that they feel affected emotionally by their male partners‟ sexual
dysfunction, sexual worries, and tendency to withdraw. As Schover et al. (2002a) indicate,
female partners have their own sexual challenges related to menopause, but these are primarily
addressed as factors in the men‟s recovery of erectile function, rather than as issues meaningful
to the partners themselves. Female partners appear to be experiencing feelings of grief in
response to sexual losses and uncertainty about how to cope, yet these are regarded in the
research as a group of symptoms rather than a process. They feel excluded by their male partners
who keep to themselves their worry about their health and sexual function, but it is not clear how
well female partners communicate about their own concerns to the patients. The female partners‟
sexual needs are not explored, nor are their views as to whether recovery of sexual intimacy is

51

important to them or how it has been attempted. Their perceptions about their role in their
„patient‟ partners‟ recovery of erectile function or couple sexual recovery are not explored.
Rather than focusing on empowering women to find resources that would help them address the
relationship and sexual issues, as well as the instrumental exigencies of their role, most
researchers suggest only support for female partners in their current state. Gilbert and colleagues
(2010) suggest, in addition, that communication between patient and partner should be
facilitated.
We may wonder whether the partners‟ distress reflects an outcome rather than a
correlate of the couple‟s sexual recovery after prostate cancer. Is it possible that the studies
reflect a very difficult adjustment of the partner who may experience significant stress and
uncertainty in the post-operative period, as she or he faces the expectations (imposed and selfimposed) for the partner role in the sexual recovery of the patient? The majority of men who are
diagnosed with prostate cancer are in their 50s and 60s (Jemal, Siegel, Xu, & Ward, 2010). Most
are partnered with women who are menopausal or post-menopausal, thus experiencing their own
challenges with loss of libido, vaginal dryness, and changes in sensitivity. Although some studies
and some writers have addressed the developmental influence of menopause on the sexual
relationship of couples by providing psycho-education about aids to post-menopausal sexual
function (Canada, Neese, Sui, & Schover, 2005; Davison, Elliott, Ekland, Griffin, & Wiens,
2005; Schover et al., 2011), the effect of menopause is by no means an accepted and well
developed variable in a model through which to view couples‟ post-prostatectomy process of
sexual adjustment after surgery.
Many questions remain: How does the partner experience his/her role? What is going on
for the partner sexually as the patient experiences sexual losses due to prostate cancer surgery?

52

Does the partner experience grief? Does the partner experience a burden in the roles of caregiver
and of sexual partner? Those questions must be asked and answered before a model of sexual
recovery can be credibly described and tested. My clinical experience has shown that men and
partners may view the partner‟s role differently from one another. The anecdotal nature of
clinical work, however, does not provide sufficient evidence that this is a prevalent phenomenon.
Because the distress of partners of men who undergo surgery for prostate cancer has been
well documented in the research literature, their mental health will not be a focus in this study.
Instead, the aim of this study is to explore empirically the role of the partner in the man‟s erectile
recovery and the couples‟ sexual recovery from the point of view of the men and their partners.
The research was motivated by the following research questions: Do patients and partners see the
partner as having a role in the couple‟s sexual recovery? If so, how do patients and partners view
it? Is there congruence between the patients‟ and partners‟ perspectives? Hypotheses were not
stated because this is an exploratory study that hopes to discover new concepts and to build
theory of couples‟ sexual recovery after prostate cancer surgery.
Method
Qualitative methodology was used to explore and describe men‟s and partners‟
perception of the partner role in the man‟s recovery of erectile function and the recovery of the
couple‟s sexual relationship. The subject is a new area of discovery and relevant concepts have
not been identified. The decision to interview men and partners separately was based on the
notion that it would give men and partners the opportunity to speak freely, unhindered by the
consideration of the other partner‟s feelings if he or she were present in the conversation.
Participants were recruited from a previous study on barriers to sexual recovery after
surgery for prostate cancer (the “Barriers” study). A study amendment was submitted and it was

53

approved by the Institutional Review Board of the University of Michigan. Participants were
asked to sign a new Informed Consent if they agreed to participate in this phase of the study.
Study Sample
Twenty-eight couples from the “Barriers” study (the full original sample) were contacted
for further interviews for this study. In the original study, couples in which the man had chosen
surgery as prostate cancer treatment were included if both members of the couple were willing to
sign Informed Consent, were not cognitively impaired, and were able to participate in interviews
in English. The goal of this study was to recruit 10-15 men and partners, not necessarily in the
same partnership, to interview separately about the role of the partner in the sexual recovery after
prostate cancer surgery. This number was expected to be optimal for the achievement of
theoretical saturation ( Guest & Johnson, 2006).
Procedure
Separate interview guides were developed for men and partners. Participants were asked
about the stage of erectile recovery and couple sexual recovery to learn about the context in
which the partner role was explored. Men and partners were then asked questions about the
partner, appropriately phrased for each cohort, such as:
“If you were to look back, what would you say your major contribution to your partner‟s
and to your sexual recovery as a couple has been?”
“What went on for you sexually during that period?”, “If you were to weigh the „benefits‟
and the „toll on you‟ that your role has taken, what would you say?”
“What kind of help/support do you think partners need during the couples‟ sexual
recovery after prostate cancer?”
Iterative process was used during the interviewing in such a way that data from each
interview were be used to modify further interviews. Interviews were digitally recorded and

54

transcribed. Data analysis proceeded along with data collection. Interviews continued until
categories were developed and theoretical saturation was achieved.
Data Analysis
The demographic data were summarized with descriptive statistics in order to describe
the sample. Modified Grounded Theory was used for the analysis (Charmaz, 2006; LaRossa,
2005). Open coding was used to identify men‟s and partners‟ observation of the partner‟s role in
the man‟s recovery of erections and the sexual recovery of the couple. Open codes were
organized into groups of related themes. These themes were further categorized into higher-level
concepts descriptive of the men‟s and partners‟ perceptions of the partner‟s role. The men‟s and
partners‟ perceptions were then compared to identify the extent to which they were congruent
with one another. NVivo 9 software was used to complete data analysis.
Assurance of Data Quality
The quality of the data and analysis were secured based on prolonged exposure (the
researcher‟s five years of experience with this population of men and partners), checking
transcripts randomly for accuracy, and consulting with a qualitative research mentor. An audit
trail was kept throughout the project, and memos that included reflexive statements were written
after each interview.
Results
Sample Characteristics
Ten men and nine partners consented to participate in the study. Eight men and partners
were couples (seven were heterosexual, one was in a same-sex partnership). Two men
participated without their partners; in both cases, the partners had indicated their lack of interest
in sex, one due to menopausal symptoms and the other as a chronic issue. One female partner

55

participated without her male partner. He had initially agreed to participate, but later did not
respond to calls to schedule appointments. He had previously indicated a loss of libido after
prostatectomy and urethral discomfort after radiation therapy. Table 3.1 provides a description
of the participants‟ demographic characteristics.
Table 3.1. Sample Demographic Characteristics
______________________________________________________________________________
Characteristic
N
%
Ethnicity
White
Patient
9
90
Partner
9
100
Chinese American
Patient
1
10
Partner
0
0
Completed education beyond HS
Patient
8
80
Partner
9
89
________________________________________________________________________
Mean
SD
________________________________________________________________________
Age at baseline
Patient
62.2
4.4
Partner
58.3
2.3
Length of relationship
Patient
31.3
8.6
Partner
34.5
6.4
________________________________________________________________________
Mode
Range
________________________________________________________________________
Income
Patient and partner
> $90,000
<$30,000-$90,000

56

The men‟s mean age was 62.2 (SD = 4.4), the partners‟ median age was 58.3 (SD = 2.3). Eight
(80%) of the ten men and eight of the nine partners (89%) had higher than high school education.
The mode income for these couples was higher than $90,000 (range $30,000-$90,000+).
All men had localized prostate cancer. One man‟s prostate cancer was more aggressive
(Gleason 8) and required additional radiation treatment. This man‟s surgical treatment also
resulted in more nerve damage, which augured poorer erectile recovery. One man had residual
urinary incontinence. Three men and two partners had chronic conditions other than prostate
cancer. The couples, on average, were together for more than 30 years. The men in this sample
were, on average, 14.3 months (range 6-24) past their surgeries. The partners in this sample
were, on average, 13.6 months (range 6-21) post the surgery of the patients. The discrepancy in
time periods after surgery between the men and partners is explained by the fact that the two men
who participated without their partners were further post-surgery than some of the others, 24 and
12 months, respectively.
Interview Findings
Context: Couples’ sexuality and sexual recovery as it is now.
Erectile function.
At more than one year after the patient‟s surgery for prostate cancer, all but one
participant was recovering some tumescence. All but one were using aids to erectile function
such as vacuum erectile devices or PDE-5 inhibitors. Although most of them had engaged in
penile rehabilitation to some degree (taking pro-erectile medication and using vacuum devices to
create blood flow in the penis), for most, it was an ambivalent involvement. Several did not like
using vacuum devices, like Rob, who said, “The uh, uh (. . .) electric pump which I never liked, I
mean that was, it was sort of aggressive and alienating”. Or Chad, who described his experience

57

in the following way: “I used the pump for the first three months as part of that process of rehab,
and it‟s such a pain to go through all that assembly and disassembly, and it‟s just too much
monkey motion for me.”
Attitudes about erections and expanded sexual expression.
Men continued to value erectile function above all. Most men also denied expanding their
sexual repertoire as a way of enjoying various aspects of sexuality in the face of erectile
dysfunction. But Peter was able to say that he and his partner did expand ways of making love:
“We do more stroking; more exploring of the body, other parts of the body . . . there is more
appreciation of it (sexual interaction).” Generally, men coped with the sexual losses by
conflating them with aging, as James put it: “. . . the fact that there‟s no ejaculation, I don‟t think
makes any difference, but there hasn‟t seemed to me . . . I don‟t have the impression that that‟s a
consequence of the surgery, it was starting, you know, to be more difficult even before this all
came up, so it‟s just a function of age, I‟d assume . . . .” Barry joked: “We cannot help but feel
sorry, but it‟s almost, you know, like an old convertible that you once had and it‟s also a process
of getting older . . . and certain things happen, so I think you have to kind of live with that and
just you have to make light of it . . . .” Partners were more accepting of erectile dysfunction.
Olivia expressed her thinking about it: “I mean I guess that, I can certainly accept that (erectile
dysfunction).”
Menopause.
Two men who participated in the study without their female partners spoke of having
lost their sexual relationships even before the surgery, one because of his wife‟s surgically
induced menopause, the other because of his wife‟s pre-existing lifelong lack of desire and
ability to experience pleasure, which was exacerbated by menopause. Although all but two

58

partners in this sample were post-menopausal, all nine were interested in retaining their sexual
relationships and reported being able to experience pleasure. Lower interest in sex than their
male partners was true of some female partners and of one pre-menopausal partner. However,
some partners retained robust sexuality despite menopause, like Denise who was quietly proud:
“I don‟t know whether I‟m just sensual or whether a lot of women are like me, I don‟t know, I
mean, I‟m 70 but I still enjoy sex.” The partners‟ sexual interest was thus variable regardless of
menopause status.
Changes in sexual relationships.
All men in this sample retained sexual desire after surgery. However, they acknowledged
a decrease in the frequency of sexual activity and feelings of grief about sexual losses. Chad,
who did not recover any tumescence, said that he was “disappointed, disappointed, disappointed,
from the sexual side of it. From the physical side of it, I never thought that I was sick to begin
with, but umm , , , yeah, just, ah. I wish I, I never even thought that there was the potential loss
of everything.” Because some of the men were uncomfortable with using aids to erectile
function, in a few cases, this was a barrier to sexual activity. Others had trouble tuning out
worries about sexual performance and partner satisfaction; for example, James said, “. . . It‟s the
part of the fear of trying you know, what if it doesn‟t work . . . ? You worry about, are you
satisfying your partner?” Partners also acknowledged sexual losses and decrease in frequency,
but were philosophical about it, like Mary who reasoned, “. . . I say, you can‟t get discouraged
because sometimes it works, sometimes it doesn‟t. That‟s just a matter of how it is, and I‟m just
not that way where it just bothers me. . .”
Recovery of sexual relationship.

59

Four of the ten men and corresponding partners saw themselves as either having
recovered or recovering their sexual relationships. John made the following statement: “I think
we‟ve kind of gone back to a similar pattern in relationship as we had before.” Peter put it this
way: “I think we‟re pretty close to coming back full circle, but um, you know, I think it‟s still a
little developing . . . .” Julia expressed contentment: “. . . You know, life is good, and I think that
our sex life is good. Like I say, it‟s not like it was, but things happen as you get older anyway.
We‟ve come to more of an understanding, we‟ve become closer. . . .”
Nearly all men endorsed the importance of communication about sexual needs and their
feeling that it was not well developed in their relationships. Carl complained, “She‟ll say, umm
oh, I thought about it a couple of hours ago but you were gone . . . and that‟s why I never have
sex with you. We get mixed messages.” Partners thought that good communication and on-going
sexual activity were more important than intact sexual function. Rose said, to clarify this point:
“. . . It was always like, you know, are you satisfied? Is this something for you? And I would let
him know that, too, because otherwise how do you know?” Mary thought communication could
be reassuring: “I think you just have to, um, let the partner know that, um, you know the strength
or length of an erection is not the most important thing, that the most important thing is that you
can be intimate with one another and give each other pleasure, um, and just feel closeness and
love.” The partners who were couples with an ability to talk about the sexual challenges,
including feelings about sexual changes and worries about performance, found that it was
beneficial and moved the relationship forward.
Couples who were communicating well and felt a continued sexual connection also found
that taking focus away from worry about erectile function and performance was helpful. While
most denied changes in repertoire, at least two couples either added more foreplay or the partner

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allowed herself to be more sexually spontaneous, which was very stimulating to her „patient‟
partner. James said, “I think she‟s more a little more wilder then she used to be . . .” In this way,
they indicated that communication and adding new forms of satisfying sexual activity fostered
sexual pleasure, emotional intimacy, and a sense of trust.
Men and partners who reported a lack of current sexual connection with their partner and
who felt that sexual recovery was stalled, described their relationships as having additional
obstacles. Some identified pre-existing stressors, such as caring for needy family members. Brad
commented on his wife‟s recent sexual unavailability: “. . . The only thing that has slowed her
down probably is her mother . . .” Others brought up relationship problems. Steven said, almost
puzzled, “. . . and the funny thing about it is, the issues that came up were more related . . . more
to our relationship issues than the physical issues.” Deborah spoke about the patient‟s
unsupportive response to a stressor: “I‟ve often told him before (laugh,) it really does mean a lot,
how you also treat me out of the bedroom. You can‟t just expect me to (snap of fingers), you
know, turn on to you when I‟ve got anger issues about that.” In one couple, urinary incontinence
hindered sexual recovery and added to an already existing conflict; as Carl pointed out, “Well,
she states that‟s the only reason she tried twice – yeah, because of urine everywhere, all over the
bed.” In a separate interview, his wife reinforced this view: “. . .yeah. it was because umm . . .
when we tried to have sex he‟s continually peeing.” Two partners described their „patient‟
partner‟s withdrawal because of immense sadness about the loss of sexual function, and said that
they felt they could not pursue it (sexual activity) out of sensitivity to the patient‟s feelings, “I
wonder whether he stays down because he knows how I feel (interested in sex) and he doesn‟t
want to come to bed because of that. I might be wrong, but I don‟t question him over that either.”
Chad, who was the husband of one of those partners, spoke with sadness: “. . . I thought it was

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always just going to be . . . a period of time, not understanding what the mechanical things would
do (mechanical aids to erections) . . . I just wanted the real thing, that experience to come back
again, yeah, and now it‟s not. . . .” In two cases, mentioned above, the female partners had preexisting disinterest in sexual activity, and thus, were not truly available as sexual partners during
the recovery phase. The couples who were experiencing difficulty with recovery were sad and
frustrated.
Most of the men and partners said they wanted to continue to work on recovering their
sexual relationship. Two partners and one man said that they were trying to adapt to a
relationship that did not include partnered sex.
Men’s perception of the partner role.
The men‟s perception of the partner role is represented in Figure 3.1. Of the ten men, two
did not expect a role for their partners in their own recovery of erection. One said he did not wish
to impose on a wife who lost pleasure after surgical menopause: “She is willing any time I have a
feeling of being romantic . . . even though she might not get anything out of it.” The other saw
himself as generally self-sufficient: “Well, I don‟t think she could help my recovery; it was
something I would have to.” One man experienced the partner as uninterested” “I just don‟t see
much interest, period.” The remaining seven men saw partners as critical to the recovery of
erectile function. These men saw partners as providing emotional support, help with frustration,
and assistance with appointments. Some examples of men‟s appreciation of the partner‟s role
are: “Well, I mean I think she‟s instrumental in my recovery and the rapidity in which that
activity has been restored”, or “Yeah well, yeah, she noticed that I was more irritable, then I
went on this sleep apnea thing so I‟m doing the, um, C-PAP machine so that seems to be helping
with that, but I also went to counseling, um, (and) went on the Prozac.”

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In their minds, the partner‟s sexual availability and sexual interest were key components
of the success of the recovery of their sexual relationship. As Carl put it, “Whenever we were
involved, she was really interested in it.” Talking about sex, including about their worries, with
their partner was helpful and resulted in greater emotional intimacy, as well as in a better sexual
relationship. Carl summarized it well: “It‟s more of a deeper . . . it‟s more than just an orgasm,
it‟s . . . our relationship is better.”
The men were asked about what they envisaged as an ideal partner role. All men wished
for a partner that would have either sexual interest of her or his own, or be aware of their needs
and take initiative in sexual activity -- but be gentle about it. Chad said, “Well I think, number
one, it has to be supportive, uh, but not demanding, uh, it has to be, uh, as a coach, uh, as one of
those improving the situation, understanding what the situation is, um, but not the drill instructor
. . .” Peter described the following scenario: “If . . . physically you need the aids, then you would
have a partner that would say, „Honey why don‟t you take a Viagra. I‟ll see you later‟, you know
or something like that.” Carl added an emotional component: “Someone who could bring me out,
make me better understand my fears, and also one, once you did get in the sex act, be willing to
do whatever it took to really turn me on.” In three of the four couples that were recovering their
sexual intimacy well, partners were, in fact, active participants. David gave an example: “It
wasn‟t just, you know, as part of the protocol to the procedure, you know, there was true, uh, true
interest and true arousal which was a, you know, kind of picking up where you left off. “ None of
the men mentioned a wish for another or younger partner; all wished to be engaged with their
own partners.
When asked about their awareness of their partners‟ sexual needs or needs for support
during the recovery period, most men were uncertain about their partners‟ sexual interest; while

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at least four men understood that their partners experienced hardship during the recovery period,
they had difficulty answering the question about whether partners needed support for themselves.
Most thought that partners did not get support.
Figure 3.1. Patient’s View of the Partner’s Role in the Couple’s Sexual
Recovery after Surgery for Prostate Cancer

Ideal
partner
role

Partner‟s
own
sexual
interest

equals

Factors that affect
sexual recovery
achievement

Sexual
connection

Sexual losses and grief
Need for assistance
with sexual function

Worry about
performance

Partner‟s
sexual &
support
needs

Partner
role

Participation in penile
rehabilitation
Influence of
menopause
Communication

Relationship problems

Help with appointments
Emotional management
and support
Available for sexual
activity, gives sexual
confidence

64

Improved
sexual
relationship

Partners’ perception of the partner role.
All nine partners saw their role in the men‟s recovery of erections as providing emotional
support and encouraging men to engage in rehabilitation activities (Figure 3.2). Julia put it this
way: “Especially in the beginning . . . I felt like I was almost nagging him to, you know,
„practice‟.” Olivia said, “I‟d like to think that he recognizes that I‟m there for him no matter what
. . . .” Partners also thought that making themselves available for sexual activity was necessary,
like Mary who said, “My role is to be there when he wants to have intercourse or wants to try.”
This was true for all partners in spite of their own diminished libido due to menopause.
In addition to providing support to the men in their recovery of erectile function, all
partners attempted to resume sexual relationships either by being available or more actively. In
their effort to engage sexually with their „patient‟ partners, partners sometimes found their sexual
role complicated. More than half of them had been responders rather than initiators of sexual
activity prior to surgery; now they found themselves having to take more initiative as they saw
that the men were struggling with worry about performance. For most, this was a necessary
transition, even when it was not easy. One partner, Martin, said: “I think that it‟s something that I
actually need to work on more, because I do sense, um, that it‟s a little more difficult for him to
initiate because of what he‟s going through.” At least one partner, Deborah, found the role
reversal so challenging that she was unable to initiate in spite of her awareness that her husband
was hoping for it: “. . . so that all of the sudden those roles have changed where I should be the
more aggressive one, and now, you know, he‟s to be the passive one . . . so I don‟t do it, you
know. . . old habits are hard to break.” Three of the partners who were willing to initiate did not
always find their sexual interest welcome. They believed that the men were too worried about
performance to respond. Carol said: “I did actually speak to him and said, „You know, even if

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you can‟t make love, just remember that the touching is still part of it.‟ I mean, um, I have in the
past ruffled his hair at the back and I‟ll put my hand on his knee if we sit down and things like
Figure 3.2. Partners’ View of the Partner’s Role in the Couple’s Sexual Recovery After
Prostate Cancer Surgery

Partner‟s
own sexual
interest

Factors that affect
achievement of
sexual recovery

Sexual
connection

Sexual losses and grief
Need for assistance
with sexual function
Attribution of lower
sexual function to
aging

Partner
role

Partner
unmet
sexual &
support
needs

Worry about
performance
Participation in penile
rehabilitation

Encouragement
Adherence

Influence of
menopause

Emotional support

Communication

Availability for sexual
activity

Relationship problems

66

Improved
sexual
relationship

this, and he tended to drift away totally.” This left the partners with a sense of loss and sadness,
and somewhat uncertain about how to fulfill their sexual role in the recovery.
Five of the nine partners, (three post-menopausal, one pre-menopausal, and one male),
said that they had active sexual needs while their „patient‟ partner was recovering. Four partners
turned to masturbation as a way of reaching sexual satisfaction when partnered sexual activity
was not available. The remaining four partners who did not have active sexual needs still said
that their sexual relationships and sexual recovery were important to them. The following
statement is representative of many of the partners, even those who had less interest in sex: “I
would like him to be happy and, you know, I have needs. I was not as sexually active as he was,
or. . . but I yeah, it was very important.”
Partners were asked to identify their needs for support for their role. Many had a wish for
some form of counseling or peer support, although not all were sure they would have
participated. Two partners said they did not want to discuss personal matters with others. Three
partners thought that the urology survivorship program was a good source of support, and that
even just participating in the study was helpful. Several said that the study facilitated a
conversation about sex. Olivia said, “I think that was a good thing that we did the study because
you get, all this is brought out . . .” The desire for support was there in general, but the wish for
a specific type and desire to use it were not uniform.
Five partners said they felt happy with the way they were fulfilling their role in their
„patient‟ partner‟s sexual recovery after surgery for prostate cancer. They thought that the men
were appreciative of their support. One partner hoped so, but was not sure. Two partners thought
that their husbands did not appreciate their contribution; one thought that she did not do much to
help and perhaps should have done more.

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Discussion
The purpose of this study was to elucidate the role of the partner in the man‟s recovery of
erectile function and in recovery of the couple‟s sexual relationship. Men and partners spoke
about the partner role in the context of their recovering sexual relationship. There was variation
in the way in which couples were recovering sexually after the man‟s surgery for prostate cancer.
At more than one year after surgery, most men no longer suffered from urinary incontinence, but
most continued to have some degree of difficulty with erections. They struggled with regaining
sexual confidence and their partners were very much aware of it. As a result, partners adopted a
caregiving role and wanted to offer as much of themselves as possible to be helpful. Recovering
the feeling of being sexually comfortable and connected with each other has eluded some men
and partners, while others felt more intimate because of overcoming the challenges of the
recovery.
The factors that appeared to facilitate couples‟ sexual recovery were the ability to
communicate about sexual losses and concerns, acceptance of suboptimal erectile function, and
willingness to not focus on erectile function. Most couples did not expand their sexual repertoire
to other activities, although more foreplay was evident for some. This combination of factors led
to even better, more intimate sexual relationships for some than they had prior to surgery.
Acceptance of erectile dysfunction was easier for the partners than the men, as has been shown
in other research (Wittmann et al., 2013), and partners often adopted a reassuring role. In their
recovery, these couples were able to adopt what Reese and colleagues call “flexible sexuality”
(Reese et al., 2010).
Discomfort with erectile aids, female partners‟ loss of libido and sexual sensitivity due to
menopause, life‟s stressors, overwhelming grief about the loss of erectile function, a partner‟s

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difficulty in assuming a more active sexual role, and relationship problems were some of the
cited barriers to these participants‟ ability to reclaim their sexual relationships.
Both men and partners had a perspective on the partner‟s role and involvement in the
man‟s recovery of erections and the couple‟s sexual recovery. They were mostly in agreement,
but there were also some differences. Both men and partners regarded the role of the partner in
the man‟s recovery of erections as important. Both men and partners thought that encouragement
and emotional support were helpful. In addition to providing emotional support, partners saw
their role as making sure that the men were diligent in their rehabilitation activities, something
that men did not see as the partner‟s role. Partners‟ role in the recovery of the couple‟s sexual
relationship was also seen as critical. The partner‟s sexual availability was a seen as instrumental
in building men‟s sexual confidence. However, partners‟ sexual availability sometimes did not
mesh well with the men‟s worry about performance, leaving both parties sad and frustrated.
When asked about what would an ideal partner in sexual recovery be like, men invariably
spoke of a partner who would be sexually interested in his/her own right, sensitive to the
recovering patient‟s sexual and emotional needs, and who would take initiative in sexual activity.
The outcomes in our sample indicate that, for the dyads who were feeling intimate again, the
partners‟ participation fit this description. This is a particularly interesting finding because the
men were not describing an ideal partner as one who was younger, with intact sexual function.
Female partners‟ higher sexual function has been described as a predictor of men‟s success in
sexual recovery in previous research (Schover, et al., 2011; Shindel, Quayle, Yan, Husain, &
Naughton, 2005). The majority of female partners in this sample were post-menopausal and the
male partner had post-prostatectomy erectile dysfunction. Our findings suggest that partners who
were in sexual relationships that had emotional intimacy with at least some ability to

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communicate about sexual issues, were able to continue to have sexual interest and enjoy their
sex lives despite a compromised physiologic substrate of their sexuality. These findings confirm
Gilbert‟s findings from a study of 20 Australian partners (Gilbert, Usser & Perz, 2010). In that
sense, we may hypothesize that relationship factors potentiate the couple‟s desire and ability to
continue a satisfying sexual relationship, in spite of age and prostate cancer treatment-related
physiologic challenges.
The difficulty that some partners evidenced in a movement from a passive, receptive
sexual role to a more active one indicates that the viability of some couples‟ sex lives depends on
the man‟s libido and erectile function. When the man struggles with confidence and does not
initiate sexual activity after surgery for prostate cancer, these couples are at risk for poor
recovery of sexual intimacy. It is an aspect of post-surgery couple sexual functioning that must
be taken into account when considering the development of interventions for couples in their
sexual recovery.
We found that the patients‟ and partners‟ major difference in perspective on the partner
role lies in their appreciation of the partners‟ needs. While the patients recognized that partners
experienced some hardship in their role, they were not aware of the partners‟ sexual needs, and
had difficulty articulating ideas about how partners might be supported. Partners were able to
describe, for the most part, their willingness to help the patients as caregivers and as sexual
partners, even beyond their own sexual needs. For some who did have sexual needs, those needs
went unmet in the relationship. Partners struggled with their role and wished for support,
although they were not always certain about what kind of support would be most helpful or
would be acceptable. This finding suggests that partners in long-term relationships desire to
fulfill their dual role as caregivers and sexual partners after their „patient‟ partner‟s surgery for

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prostate cancer. However, this dual role is not well understood either by the patient or the
partner. Partners take on the role despite its lack of definition and their uncertainty about how it
should be fulfilled. Most try and persist even when they encounter frustration, lack of success,
and lack of support. This uncertainty, lack of fulfillment of their own needs, and lack of support
may be some of the factors implicated in partner distress already described in the research
literature. In the review of the research, the author suggests that partners are typically viewed in
studies as instrumental to the men‟s sexual recovery. If they are similarly viewed and experience
themselves as thus objectified in usual prostate cancer care, this perception could add to their
stress and even to resentment in their care-giving and sexual role. If their own needs are not
recognized and supported, partners may begin to experience a burden in their role that can
impede the sexual recovery of the couple.
Study Strengths and Limitations
This study brings new insights to men‟s and partners‟ experience of and perspective on
the partner‟s role in couples‟ sexual recovery after the man‟s surgery for prostate cancer,
particularly about (a) the men‟s wish for a sexually interested partner regardless of menopause
rather than a partner with intact sexual function who does not have post-menopausal sexual
challenges with libido and vagina dryness, (b) partners‟ willingness to be both caregivers and
sexual partners, and (c) partners‟ unmet needs in their role. If these findings are confirmed in
larger studies, they can have the benefit of enriching clinical practice and achieving better
outcomes for couples that are working on recovering sexual intimacy.
The results of this study can be regarded as preliminary because the sample was small
and lacking in diversity. As participants were recruited from a sample of a previous study, the
sample may have been biased. The wide-ranging post-operative time frame (6-21 months) for the

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participants also may have limited the validity of the findings. Although saturation was achieved,
the findings are transferable, but not generalizable, to the population of prostate cancer survivors
and partners.
Implications for Social Work Practice
Partners have a critical role in the man‟s recovery of erectile function and the couples‟
sexual recovery. Partners have been seen as factors in the man‟s sexual recovery, but not in their
own right. This study suggests that they are legitimate stakeholders in the men‟s and couples‟
sexual recovery, and that they can experience uncertainty about how to be helpful, have their
own unmet sexual needs, and have needs for emotional support for themselves. These
unrecognized needs can create partner burden and lead to a difficult adjustment for the partner,
as well as interfere with couples‟ recovery of sexual intimacy. Both patients and partners can be
educated about the issues that affect partners who support men after surgery for prostate cancer.
Interventions developed to help couples recover sexual intimacy should address partner needs.
Couples who had been dependent on the man‟s libido and erectile function in their sexual
activity need even more support. Partners can be encouraged to learn more about postmenopausal sexuality and to recognize that they can have a positive impact on their sexual
relationships; if they take responsibility for their own sexuality and sexual interest, they may be
able to increase the viability of their sexual relationships when men are too worried to continue
their sexual leadership role.
Future Research
There is a need to design future studies with larger samples to confirm the current study‟s
findings. Understanding of partners‟ need for support particularly needs further elucidation. The
research should include a question about partners‟ perception of the way they are seen and

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responded to by providers who treat the patients for prostate cancer. Their distress and readiness
for dual care-giving should be evaluated with measures developed to capture their unique
position. This research is necessary not only as a precursor to the development of effective
interventions that will support partners, but also as a step toward helping men understand their
partners‟ needs in the context of sexual recovery after surgery for prostate cancer. Partners‟
desire to have information and to be included in decision-making about prostate cancer treatment
is already documented in the research literature (Mason, 2005). Increasingly, partners are
involved in decision making as a result. Research that helps further elucidate the partner role and
the partner‟s need for support in fulfilling the role in the man‟s and couple‟s sexual recovery
after surgery can lead to more comprehensive care in prostate cancer.
Conclusion
Partners have a critical role in the sexual recovery of the couple after surgery for prostate
cancer. Their needs and challenges are not well known and their post-menopausal sexual
viability has been misunderstood. Preventing partners from becoming burdened by their dual role
as caregivers and sexual partners should be included in interventions designed to help couples
recover sexual intimacy after treatment for prostate cancer.

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CHAPTER IV
COUPLES’ SEXUAL RECOVERY TRAJECTORY DURING THE FIRST TWO YEARS
AFTER SURGERY FOR PROSTATE CANCER: CHANGE IN SEXUAL FUNCTION,
SEXUAL SATISFACTION, AND DYADIC SATISFACTION
Abstract
Background: Couples‟ sexual recovery has not been studied prospectively. Studies have
demonstrated discrepancy in men‟s and partners‟ sexual function and distress, both before and
after surgery. Partners are often seen as influential factors in the men‟s sexual recovery. The
present study sought to follow men‟s and partners‟ sexual function, sexual satisfaction, and
dyadic satisfaction from before surgery to nearly two years after surgery. Method: Couples‟
survey data were available at three time points: 28 at baseline (T1), 20 three months after surgery
(T2), and 16 at 18 months on average (T3). The Expanded Prostate Index Composite assessed
erectile function and urinary incontinence; the Sexual Experience Questionnaire assessed men‟s
satisfaction with erections and individual and couple sexuality; the Female Sexual Function
Index assessed female sexual function, and the Dyadic Adjustment Scale assessed partnership
satisfaction. Demographic data were obtained at baseline. A multilevel analysis was used to with
time as Level 1, man and partner comparison as Level 2, and inclusion of covariates such as age,
education, income, comorbidities (other illness conditions) and urinary incontinence as Level 3.
Results: Erectile function declined after surgery and then improved at T3, while men‟s sexual
satisfaction declined after surgery, but did not rebound at T3. Female partners‟ sexual
satisfaction declined at T2 and continued to decline at T3. Partnership satisfaction was greatest
when female partners were sexually satisfied, and the couple‟s income was reasonably high.
Conclusion: Both men‟s and partners‟ sexual satisfaction decline after prostate cancer surgery,

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even as erectile function begins to rebound. Female sexual satisfaction and income level appear
to be influential factors in couples‟ partnership satisfaction during the recovery of sexual
intimacy after surgery for prostate cancer.
Background
Prostate cancer is the second most prevalent cancer in men. Approximately 40% of male
cancers are accounted for by prostate cancer, with one in six men having a chance of being
diagnosed with it each year (Hewitt & Stovall, 2006). In 2010, it was estimated that 217,730 men
would be diagnosed with prostate cancer (Siegel et al., 2012). Ninety- eight percent of men with
prostate cancer were expected to survive five or more years; men who are diagnosed and treated
for localized disease have a 98% chance of 15-year survival (Siegel et al., 2012).
Although survivors and their partners can think of prostate cancer as a “good cancer”
because survival after definitive treatment is very likely (Maliski, Heilemann, & McCorkle,
2002), they pay a price. All prostate cancer treatments have side-effects, which can become longstanding and not resolved for some (Benson et al., 2012; Hollenbeck, Dunn, Wei, Sandler, &
Sanda, 2004; Matthew et al., 2005; Wei et al., 2002). Surgical treatment for prostate cancer
(prostatectomy) ushers in two major side-effects: urinary incontinence and erectile dysfunction.
Urinary incontinence typically becomes a short-term frustration for most. More than 90% of men
return to normal bladder control within the first year of treatment, some earlier (Sanda et al.,
2008). Erectile dysfunction is a much more persistent side-effect, with a slow resolution over two
or more years without returning to pre-surgery level (Miller et al., 2005; Schover et al., 2002).
For some men, erectile dysfunction is a permanent outcome, with the need to use medical or nonmedical aids to erections. This makes sexual activity much less spontaneous and, in fact, likely

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leads to diminution or cessation of sexual activity for some men, as evidenced by men‟s
infrequent use of aids to erections (Miller et al, 2006).
The loss of erectile function affects men‟s ability to function sexually, which in turn
affects their sexual relationships with their partners. Post-prostatectomy sexual recovery requires
that men and partners develop a new sexual paradigm that may include the use of aids to sexual
function. Since men who are treated for prostate cancer are often partnered with post-menopausal
female partners, adaptation of sexual interactions already may have either taken place or added
to distress regarding the sexual relationship.
Research on couples in prostate cancer began in the 1990s. In a seminal study, Kornblith,
Herr, Ofman, Scher, & Holland (1994) surveyed 172 prostate cancer survivors and 83 partners
and found that partners were more distressed than patients, and wondered whether culturally,
men and women differed in their expression of distress. The recognition of the importance of the
partner and the desire to understand the differences in men‟s and female partners‟ expression of
distress encouraged the effort to look at patients recovering from cancer in the context of their
relationships.
There is very little literature on the change that couples experience in their sexual
function and their sexual relationships or satisfaction after surgery for prostate cancer. There is
also almost no literature on how these changes affect dyadic adjustment. The majority of studies
on couples reflect a one-time observation point (Garos, Kluck, & Aronoff, 2007; Langer, Rudd,
& Syrjala, 2007; Navon & Morag, 2003; Neese et al., 2003; Soloway, Soloway, Kim, & Kava,
2005; Wootten et al., 2007). One study looked at the “prostate couple” pre-operatively and found
discrepancies between patients‟ and partners‟ evaluation of their level of distress and of the
man‟s erectile function (Soloway et al., 2005). Men were more distressed and regarded their own

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erectile function as higher than did partners. A retrospective study asked couples in a focus group
to recall the challenges to the maintenance of their sexual relationships during the post-operative
period, but highlighted the need for increased communication within the couple, rather than the
biopsychosocial aspects of the sexual recovery itself (Sanders, Pedro, Bantum, & Galbraith,
2006). Others have studied couples post-operatively and found that partners do not necessarily
encourage men to seek help for sexual problems, assuming that sex will be over after prostate
cancer treatment (Neese et al., 2003). Yet other research evaluated partner factors as predictors
of men‟s sexual satisfaction (Garos, Kluck, & Aronoff, 2007) and concluded that partners‟
depression and depression about their sex lives had a negative effect on men‟s sexual
satisfaction. Two studies attempted to get at couple issues by studying men‟s responses to
questionnaires about quality of life, coping, mood, and marital satisfaction (Navon & Morag,
2003; Wootten et al., 2007).
Only one study of couples with prostate cancer has a longitudinal design. Couper and
colleagues prospectively studied distress and dyadic relationship satisfaction of 103 men with
prostate cancer and their partners (Couper et al., 2006b). They found that the female partners
were more distressed at baseline and less distressed one year later than the men. On the other
hand, unlike the men, female partners were markedly less satisfied with their couple relationship
at the 1-year time point. Couper‟s findings are important because they show that couples can
experience problems in the relationship with different timing, and that the lack of alignment in
the experience can put them at risk for a poorer adjustment. Alignment does appear to be
important; a study by Fagundes (2012) on intrusive thoughts in couples coping with prostate
cancer reports that congruence in experience is associated with less negative affect within the
couple (Fagundes, Berg, & Wiebe, 2012). Couper‟s study begins post-operatively and cannot,

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therefore, address the impact of the change in the man‟s sexual function on the functioning of the
couple.
Finally, currently available research on couples does not include factors that could have
bearing on the change in couples‟ sexual function, sexual satisfaction, and dyadic satisfaction.
Yet there are some factors that could be influential. During the past five or more years, men who
are recovering erectile function after treatment have been advised to either take pro-erectile
medications, to use vacuum devices, or both to promote blood flow and to prevent fibrosis in the
penis. Recommendation of „penile rehabilitation‟ has become widely disseminated in urologic
practice as a part of the recovery experience (Mulhall & Morgentaler, 2007; Muller, Parker,
Waters, Flanigan, & Mulhall, 2009; Teloken, Mesquita, Montorsi & Mulhall, 2009 ). In general,
the effect of participation in penile rehabilitation is not included in the research on couples to
date.
The cost of penile rehabilitation, as well as chronic use of aids to erections, can be high.
Insurance coverage is very poor or non-existent. At least one study draws attention to the
financial dilemma that men with erectile dysfunction face in the current system of insurance
(Polinski & Kesselheim, 2011). Prostate cancer survivors are affected, by definition, because of
their cancer treatment.

Several studies attempted to identify whether cost plays a role in

adherence to penile rehabilitation (Kimura et al., 2012; Lee, Cheetham, & Badani, 2009; Polito,
d‟Anzeo, Conti, & Muzzonigro, 2012; Teloken, Mesquita, Montorsi, & Mulhall, 2009). Their
findings are equivocal; some suggest that cost is an issue, while others report that cost is not a
barrier. In this study, both adherence to penile rehabilitation and income (a proxy to cost of
rehabilitation) were considered as important covariates of couples‟ sexual recovery after surgery
for prostate cancer.

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It should be noted that extant research is largely motivated by an interest in helping the
man recover optimally. Thus, looking at the partner factors is an element in this effort. The
instrumental perspective on the partner places the partner at risk of being reduced to a tool in the
armamentarium of aids to the man‟s recovery. This does not do justice to the experience of the
partner in the couple‟s sexual recovery. The lack of recognition that the man‟s and partner‟s
relationship is dynamic, and that the man and the partner have mutually influential roles in it,
also hampers our understanding of the interactional sexual recovery of the couple (Lundgren,
2004). In this study, changes in sexual function, sexual satisfaction, and dyadic satisfaction were
considered for both members of the couple.
The purpose of this study was to describe couples‟ recovery from before surgery to more
than one year after surgery, based on functional changes at three time points of observation.
Variables of interest, men‟s sexual function, men‟s sexual satisfaction, female partners‟ sexual
function, and dyadic satisfaction were measured pre-operatively (T1), at three months after
surgery (T2), and at approximately 18 months after surgery (T3). The relationship between the
variables was explored. Age, length of relationship, income, education, comorbidities, the man‟s
participation in penile rehabilitation, and the presence of sexual activity were also taken into
account as potential important covariates.
Since couples experience sexual recovery in a way that proceeds from a pre-operative
level of dyadic functioning to a new functioning based on coping with the sexual side-effect of
surgery, these questions arose for the current research: How does the man‟s sexual satisfaction
change after surgery? Does female sexual function and satisfaction change during the recovery
period? Do couples retain sexual activity after prostatectomy? Does dyadic satisfaction (from

79

pre-treatment) change after prostate cancer treatment? What are the factors that affect dyadic
satisfaction?
Method
Study Sample
Twenty-eight couples in which the man had prostate cancer participated in a previous
study on the barriers to couples‟ sexual recovery after surgery for prostate cancer. Their survey
data from the pre- and post-operative periods were available for this study. All couples were recontacted as a part of the current study in order to obtain assessments for a third time-point.
Procedure
Participants were assessed with four validated measures at three time points: at baseline
(T1), approximately three months after surgery (T2) and 6–28 months after surgery (T3). They
filled out a demographic questionnaire at baseline, and answered questions about sexual activity
and engagement in penile rehabilitation after surgery.
Measures
A battery of validated instruments was used to characterize (by way of patient and partner
self-report) the man‟s and partner‟s sexual function, the man‟s sexual satisfaction, and the
adjustment in the couple relationship. An example of data structure is shown in Table 4.1.
Cronbach alphas from the original validation studies and from the current study are included in
parentheses. Expanded Prostate Index Composite-Short Form (EPIC-SF) is a 13-item
questionnaire assessing urinary, sexual, bowel and hormonal side-effects of prostate cancer
treatment (Wei et al., 2000). Only sexual function assessment (five items) and urinary
incontinence were used in this study. In each domain, participants responded to a 1-5-point
Likert scale based on their experience in the last four weeks, with one reflecting low function

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Table 4.1. Data Structure Used in the Analyses with Hypothetical Cases
Study ID

Patient

Timepoint

Dyadic
Adjustment
Scale Total
Score

1
1
1
1
1
1
2
2
2
2
2
2

1
1
1
2
2
2
1
1
1
2
2
2

1
2
3
1
2
3
1
2
3
1
2
3

116.00
113.00
119.00
120.00
121.00
125.00
116.00
126.00
125.00
104.00
91.00
114.00

Male Sexual
Function Total
Score on Expanded
Prostate Index
Composite
83
45
54

Female Sexual
Function Total
Score on Female
Sexual Function
Index

21
12
10
76
40
49
28
22
17

and five reflecting high function. The questions in the sexual domain relate to the ability to have
an erection, erection quality, and the extent to which erectile function has been a problem,
denoted as „bother.‟ Cut-off scores in the sexual function domains are 0-33 („severe erectile
dysfunction‟), 34-45 („moderate erectile dysfunction‟), 46-60 („mild/moderate‟ erectile
dysfunction), (61-75 („mild‟ erectile dysfunction), and a score above 75 („no erectile
dysfunction‟) (Wheat et al., 2009). Each domain has been validated. The sexual domain has a
Cronbach α = 0.93 (0.68). Urinary incontinence has a Cronbach α = 0.89 (0.17).
The Sexual Experience Questionnaire (SEX-Q) (Mulhall et al., 2007) assesses
satisfaction with erection, individual sexuality, and couple sexuality; it has 12 items and
participants respond on a 5-point Likert scale. A higher number reflects a higher level of
satisfaction. Cronbach α for the three domains are 0.88 (0.90); 0.79 (0.80); and 0.80 (0.90),
respectively. The following ranges are used to describe satisfaction in each domain: 26–30
81

(„satisfied‟); 22–25 („mild dissatisfaction‟), 11–21 („moderate dissatisfaction‟), 1–10 („severe
dissatisfaction). The scores were adapted in this dataset to a 1– 100 scale to match the EPIC
(multiplied by 3.33).
The Female Sexual Function Index (FSFI) (Rosen, 2000) is a 19-item assessment with
six domains. A summary score assesses total sexual function (Total Cronbach α = 0.93 (0.97):
desire (two items), arousal (four items), lubrication (four items), orgasm (four items), satisfaction
(three items) and pain (three items). A summary score assesses total sexual function. Participants
respond on a 1-5-point Likert scale based on their experience in the last four weeks, the number
one reflecting low function and five reflecting high function. Questions related to intercourse
have a 0 option for „no intercourse‟. All six domains of the FSFI have been validated and are
reliable Cronbach α for the six domains is Desire = 0.92 (0.91), Arousal = 0.95 (0.97);
Lubrication = 0.96 (0.97). Orgasm = 0.94 (0.97); Satisfaction = 0.89 (0.85), and Pain = 0.94
(0.99), respectively). Scores range from 1-6 with a maximum total function score of 36. Ranges
are not defined.
The Dyadic Adjustment Scale (DAS) (Sharpley & Cross, 1982; Spanier, 1976) is a 32item measure. Participants respond to a 1-5-point Likert scale, with a lower score reflecting a
lower function. There are four domains: consensus, affect, satisfaction, and cohesion, but only
the total score is reliable (Cronbach α = 0.96 (0.79) (Sharpley & Cross, 1982). A total score of
108 was considered to be average in both Sharpley‟s and Spanier‟s validation studies.
Demographic information was collected at baseline. Clinical data were abstracted from
the patients‟ medical records. After surgery, data on compliance with penile rehabilitation
recommendations, the use of erectogenic aids, and presence of sexual activity were collected.

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Charlson Comorbidities Index (Charlson, Pompei, Ales & McKenzie, 1987) predicts the risk
of death from comorbid conditions and is widely used in the research literature.
Data Analyses
General linear models allowing the errors associated with the repeated measurements on
individuals to be correlated were fitted to each of four primary continuous dependent variables
(DVs): (a) male sexual function (as measured by the Expanded Prostate Index Composite); (b)
male sexual satisfaction (as measured by the Sexual Experience Questionnaire); (c) female
sexual function (as measured by the Female Sexual Function Index); and (d) dyadic
adjustment/satisfaction (as measured by the Dyadic Adjustment Scale). Predictor variables (IVs)
were categorical and included time point, gender, and income. Income was measured in the
Demographic Survey by a 9-range scale (e.g., $10,000-$19,999): it was categorized into a
dichotomous variable with family income below or above $50,000, based on the mean range,
which was $50,000-$59,999. Baseline assessments, i.e., age, education, men‟s comorbidities and
post-operative participation in penile rehabilitation, as well as post-operative sexual activity,
were considered to be covariates, with only one covariate tested in any given model due to the
small sample size. Because urinary incontinence can be a handicap to sexual recovery, it was
also considered as a covariate.
In this analysis, Level 1 represents evaluation of the change in average functional
outcomes on all four dependent variables (male sexual function, female sexual function, male
sexual satisfaction, and dyadic adjustment/satisfaction) at three time points. Level 2 represents a
comparison of the sample average outcomes on the Dyadic Adjustment Scale for the men and the
partners at the three time points. Level 3 represents the inclusion of covariates (baseline age,
income, education, men‟s physical comorbidities, post-operative participation in penile

83

rehabilitation, and presence of sexual activity in the assessment of the average outcomes of all
four dependent variables at the three time points.
The SPSS MIXED procedure, which enables the general linear models described above
to be estimated (using a heterogeneous-compound symmetry covariance structure for the
repeated measures on each individual, where the error variances are allowed to change over
time) was used for these analyses (IBM SPSS Statistics 20). The University of Michigan
Institutional Review Board approved the study.
Results
Description of the Sample
Table 4.2 represents participants‟ demographic characteristics at baseline. The reasons
given by couples for dropping out during the post-operative phase included a choice of radiation
treatment rather than surgery (2) absence for more than 5 months (1) and the man‟s return to
work or the couple‟s return to retirement activities (5). The third wave of data collection was not
anticipated by these couples and the reasons given for non-participation was death of the patient
(1) and the couples‟ feeling that they were now at a distance from the surgery and did not wish to
prioritize participation in the study (4). One couple returned to the study for the third time point
(T3) although they did not participate during the post-operative phase.
The men‟s mean age was 62.2 (SD = 6.5) and their partners‟ mean age was 58.4 (SD =
7.4). The couples were married for 37 years on average. Seventy-one percent of the patients had
high school and higher education; 58% of partners were similarly educated. The couples‟ mode
yearly income was $90,000 and higher (range of $20,000-$90,000+). Twenty-six of the male
participants were White, one was African American, and one was Asian. Twenty-six of the
female participants were White, one was African American, and one was Hispanic. These

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Table 4.2. Demographic Characteristics of Participants
(N = 28 Patients and 28 Partners)
______________________________________________________________________________
Characteristic
N
%
Ethnicity
White
Patient
26
93
Partner
26
93
African American
Patient
1
4
Partner
1
4
Hispanic
Patient
0
0
Partner
1
4
Chinese American
Patient
1
4
Partner
0
0
Education beyond HS
Patient
20
71
Partner
17
61
________________________________________________________________________
Mean
SD
________________________________________________________________________
Age at baseline
Patient
62.2
6.50
Partner
58.4
7.4
Length of relationship
Patient
33.8
13.3
Partner
33.7
14.3
________________________________________________________________________
Mode
Range
________________________________________________________________________
Income
Patient and Partner
> $90,000
<$30,000-$90,000

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characteristics reflect the population treated at this cancer treatment center. Most of the patients
had low- (Gleason 6) or moderate- (Gleason 7) risk early stage prostate cancer. In general, these
were fairly healthy men. At T3, they were 18 months past their surgeries, on average.
After surgery, of the 20 men who continued in the study, only a few men‟s pathology
suggested a high risk of recurrence; four men had a Gleason score higher than 7 and a postoperative pathological stage T3. Eighteen had nerve-sparing surgery, which gave them the best
chance of recovering erectile function and penile sensitivity. Two had partial nerve-sparing
surgery. Two of the men with the higher risk disease had additional localized radiation therapy,
which would have had a negative effect on their erectile function.
Table 4.3 summarizes the patients‟ clinical characteristics. Of the 20 couples that
returned after surgery, 12 (60%) continued to be sexually active after surgery, while 8 (40%)
reported minimal or no sexual activity. Fourteen men (70%) engaged in penile rehabilitation to
some degree, four (20%) did not, and one (10%) did not respond to the question about penile
rehabilitation.
Level 1 Analysis: Functional Outcomes at T1 (Baseline), T2 (Three Months After Surgery),
and T3 (18 Months After Surgery)
Functional outcomes at the three time points are described in Table 4.4. The men‟s
average baseline mean erectile function (as measured by the EPIC) was just one point above
„mild erectile dysfunction‟ range. Assessments at T2 demonstrated a statistically significant
decrease (mean change = 30.86, p < 0.001 for T2 vs. T1 effect in general linear model; see Table
4.3) in sexual function to „moderate erectile dysfunction‟. By T3, there was a statistically
significant increase in function (relative to T2) to „mild to moderate erectile dysfunction‟ (mean
change = 10.72, p = 0.02). Large standard deviations indicate great variability in the scores,

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Table 4.3. Patients’ Clinical Characteristics
(N = 28 at T1, N = 20 at T2)

Characteristic
_____________________________________________________
Pre-Operative PSA Mean (SD)
18 (6-28)
_____________________________________________________
n
%
_____________________________________________________
Pre-Operative Gleason Score
6
11
39
7
13
46
8
2
7
9
2
7
Clinical Stage
T1
22
79
T2
6
21
Post-Operative Gleason Score
6
3
15
7
16
60
8
0
0
9
1
0.5
Pathological Stage
T2
16
80
T3
4
20
T4
0
0
Nerve Sparing
Bilateral

18

90

Unilateral

2

10

None

0

0

0

0

Surgery

28

100

Radiation

2

10

Comorbidity Score (median)
Prostate Cancer Treatment

_____________________________________________________

particularly at T3. Men‟s average scores regarding bladder control changed in a significant
manner from nearly full continence at baseline to incontinence at T2 (on average). At T3, men on

87

average were still experiencing incontinence to a significant degree, although their bladder
control appeared to be improving. Once again, there was great variability in scores. Men were
mildly dissatisfied with baseline erection and individual sexuality (as measured by the SEX-Q).
Satisfaction in both domains decreased significantly to „moderate‟ dissatisfaction at T2 and
remained in the same range at T3. Men were already „moderately‟ dissatisfied at baseline with
their couple sexual relationship, and their satisfaction declined significantly within that range at
T2. Their dissatisfaction continued on the same trajectory at T3, but nearly reached the „severe
dissatisfaction‟ range. As the large standard deviations indicate, there was a great deal of
variability in the scores, particularly at T2 and T3.
Female partners‟ sexual function (as measured by the FSFI) was moderately low on
average at baseline and in general did not change over time. Most of the subscales of the FSFI
did not show a statistically significant change between T1, T2, and T3, although there was a
trend suggesting a decrease in function. Only sexual satisfaction, which was represented by a
higher score at baseline than the other functional subscales, decreased significantly at T2 and
continued to decline as time went on. Large variability in the scores was present for all subscales,
particularly at T2 and T3.
Men and partners‟ Total Dyadic satisfaction (as measured by the DAS) did not show a
statistically significant change, although graphic representation suggests that partners‟ dyadic
satisfaction decreased markedly at T3 (Figure 4.1).
Level 2 Analysis: Patient and Partner Comparison
There were no statistically significant differences between the men‟s and partners‟ average
scores on the Dyadic Adjustment Scale at any of the three time points. Graphical representation

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Table 4.4 Men’s and Partners Functional Scores at Three Time Points
_______________________________________________________________________________________________________
Variable
Time point 1
Time point 2
Time point 3
n=28
n=20
n=16
_______________________________________________________________________________________________________
F
p
p
p
Mean(SD)
Mean(SD)
Mean(SD)
Statistic T2-T1
T3-T2
T3-T1
_______________________________________________________________________________________________________
Patients
EPIC sexual function
EPIC urinary incontinence

76.23(21.70)
89.30(18.512)

45.37(24.90)
74.55(26.89)

56.09(30.75)
78.18(26.81)

25.693
8.934

<0.001
0.001

0.02
0.44

0.03
0.02

SEX-Q erection
SEX-Q individual
SEX-Q couple

67.82(25.51)
73.33(15.99)
61.67(26.59)

40.62(24.85)
52.38(20.27)
43.52(29.51)

46.39(25.39)
55.73(24.10)
39.74(34.72)

14.425
17.599
8.714

0.01
<0.001
0.001

0.37
0.62
0.59

0.01
0.001
0.001

112.45(11.45)

107.93(10.56)

108.83(7.81)

1.513

0.71

0.21

0.14

3.02(1.19)
3.95(1.79)
4.06(2.07)
3.90(2.05)
3.70(2.53)
4.369(1.44)
23.46(8.36)

2.94(1.21)
3.24(2.04)
3.08(2.52)
3.40(2.48)
2.95(2.81)
3.54(1.71)
19.71(10.27)

2.80(1.15)
2.90(1.94)
2.86(2.44)
3.09(2.49)
3.04(2.99)
3.15(1.83)
17.84(11.11)

0.214
2.647
1.811
0.451
0.821
5.328
2.553

0.96
0.06
0.10
0.36
0.28
0.01
0.06

0.60
0.87
0.91
0.84
0.95
0.75
0.95

0.55
0.07
0.18
0.60
0.32
0.01
0.10

DAS total
Partners
FSFI desire
FSFI arousal
FSFI lubrication
FSFI orgasm
FSFI pain
FSFI satisfaction
FSFI total

DAS total
114.18(11.54) 113.33(10.72) 106.00(16.95) 1.513
0.71
0.21
0.14
_______________________________________________________________________________________________________

89

(Figure 4.1) suggests that men‟s satisfaction with the couple relationship plummeted after the
surgery, but improved slightly at the third time point. Partners‟ satisfaction appears to have
decreased at the third time point. The error bars (representing +/- 1 SE) in the figure illustrate the
general statistical overlap in men‟s and partners‟ scores, particularly at T3. The standard error of
the partners‟ average score at T3 suggests a wide range of dyadic satisfaction outcomes, and
perhaps even a split sample.
Figure 4.1 Dyadic Satisfaction at T1, T2 And T3 with Error Bars. For interpretation
of the references to color in this and all other figures, the reader is referred to the
electronic version of this dissertation.

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Level 3 Analysis: Inclusion of Covariates
Controlling for age, income, education, penile rehabilitation, or sexual activity alone or in
combination did not appear to change the statistical significance of the changes over time in any
of the DVs of interest. Urinary incontinence as a covariate did not make a contribution.
However, including female sexual satisfaction and income appeared to have an effect on the
female relationship (dyadic) satisfaction that showed a trend toward significance, particularly
between T2 and T3 (T1:2 p = 0.27, T2:3 p = 0.08, T1:3 p=0.18, respectively). Figure 4.2
demonstrates a split in the sample based on female sexual satisfaction and income, i.e., the

Mean female dyadic satisfaction

Figure 4.2 Female Dyadic Satisfaction Based on Female Sexual Satisfaction and Income

Mean female sexual satisfaction
Income > $60,000
Income < $60,000
91

female partner‟s low sexual satisfaction and a couple‟s low income level are associated with a
the female partner‟s lower dyadic satisfaction, while female partners‟ higher sexual satisfaction
and high income level are associated with a female partner‟s greater satisfaction within the
couple dyadic relationship.
Discussion
Although the small sample in this study requires that we view the findings with caution
and not generalize to the population of prostate cancer survivors and their partners, the findings
are intriguing and suggest the possibility of both confirmation and extension of the current state
of knowledge about couples‟ sexual recovery after surgery for prostate cancer. Men‟s sexual
function declined after surgery and began to improve 18 months later, as has been described in
other research (Penson et al., 2005). However, while one might expect that men‟s sexual
satisfaction might decline and correspondingly improve, the findings of this study do not
affirmatively support that expectation.

While men‟s satisfaction with their erection and

individual sexuality began to rebound at 18 months after surgery, satisfaction with their couple
sexual relationship, which was lower than satisfaction with erection and individual sexuality at
baseline, did not improve; in fact, it appeared to continue to decline. The enormous variability in
scores suggests that some men were experiencing their sexual relationships as improving, while
others may have felt that their sexual relationship was seriously damaged by the loss of erectile
function.
Female partners‟ sexual function appeared to decline after surgery and did not improve at
18 months after surgery. The statistically significant decrease in the partners‟ sexual satisfaction
(which had been moderately high at baseline) between T1 and T2, and T1 and T3 seems to stand
out because it is the only subscale in the FSFI that attends to the woman‟s psychological

92

response rather than to physiologic function. The small sample size does not allow for an
inference of any specific meaning from this finding other than that it may be important in future
studies to distinguish between female sexual function and sexual satisfaction. We can see in this
study that there is difference in men‟s sexual function recovery and sexual satisfaction recovery.
This distinction is likely equally useful when looking at female sexuality. Previous research
suggests that female sexual function is the „driver‟ of men‟s sexual recovery (Moskovitz, et al.
2010, Shindel et al., 2005). The findings of this study raise the possibility that women‟s feelings
about sex, rather than physiologic sexual function, influence sexual recovery and overall sexual
satisfaction.
Female partners‟ apparent decrease in dyadic satisfaction, based on their sexual
satisfaction at 18 months after surgery (Figure 4.2) is reminiscent of Couper‟s study findings
(Couper et al., 2006b). He and colleagues found that partners‟ satisfaction with their relationship
declined at one year after prostate cancer treatment. As Figure 4.2 demonstrates, the decrease in
both female sexual satisfaction and female dyadic satisfaction suggests that female sexual
satisfaction may mediate dyadic satisfaction. A similar trend was not found for men, when
looking at dyadic satisfaction based on the men‟s satisfaction with the couple sexual relationship.
This finding is counter-intuitive in the light of previous research that tended to view female
partners‟ low post-menopausal sexual viability as a negative factor in the couple sexual
relationship and in the men‟s sexual recovery. The current findings suggest the possibility that
partners try to stay engaged in the sexual recovery immediately after surgery, but that their
ability to sustain that effort while not experiencing sexual satisfaction flags as time goes on. The
role of the partner‟s sexuality and sexual satisfaction in the couple‟s sexual recovery is a subject
that warrants further exploration.

93

The combined influence of couple income and female sexual satisfaction on the female
partner‟s relationship (dyadic) satisfaction points to the possibility that overall economic or
financial stress may affect the female partner‟s satisfaction with the relationship because of the
couple‟s inability to attend to sexual recovery. This finding may be related to the research that
has shown that cost can be a barrier to penile rehabilitation and, ultimately, to the sexual
recovery of the couple (Lee, Cheetham, & Badani, 2009; Teloken, Mesquita, Montorsi, &
Mulhall, 2009). Three couples in the sample reported financial worries; in two of those couples,
the man was unemployed. The unemployed men reported feelings of guilt and marginalization.
While one cannot draw conclusions from two participants‟ experiences, these men were feeling
distressed in the two major roles that are socially constructed as the core of masculinity: sexual
prowess and success in achievement. Both are eloquently described by Wall and Kristjanson
(2005) who seek to revise what they call „hegemonic masculinity‟ so as to provide men who are
recovering sexual function and sexual relationships after prostatectomy with more flexible selfimage options (Wall & Kristjanson, 2005). The complex nature of the relationship between
individual and couple functional issues and external stressors should be further investigated in
the context of couples‟ sexual recovery after surgery for prostate cancer.
Study Strengths and Limitations
The strength of this study is its longitudinal design, which started with a pre-operative
assessment and went on to 18 months after surgery on average. The inclusion of men and
partners as equal participants in the study of a sexual recovery of the couple after surgery for
prostate cancer added a new dimension in that it did not view the partner as a variable in the
man‟s recovery. Following patients‟ and partners‟ sexual function, satisfaction, and their dyadic
relationship from before surgery to 18 months afterward provides an initial picture of the

94

challenges that couples experience as they attempt to recover their intimate lives. The findings
triangulate the findings of the two qualitative studies of the dissertation which challenge the way
in which the role of female partners‟ sexuality has been perceived in extant research on couples‟
sexual recovery after prostate cancer treatment.
There are several study limitations. The sample was small and non-diverse, both in terms
of ethnicity and culture, and sexual orientation. The attrition of participants during T2 for reasons
of different treatment choice, return to work and retirement activities, and lack of availability
during the timeframe of the study, and during T3 for reasons of death and desire not to prioritize
the research, resulted in missing data. The wide temporal range of the participants‟ assessments
during T3 makes the „average‟ time point less reliable and valid. In addition, while following
patients for nearly 18 months was a significant contribution to the literature on sexual recovery
after prostate cancer, erectile function continues to recover for six or more months on average
after the end of the study, and the current study highlights what might be considered to be the
„trough‟ of the recovery trajectory rather than the ultimate end-point. Given the limitations, the
findings of this study can be considered transferable, but not generalizable.
Tentative Implications for Social Work Practice
Men‟s loss of erectile function and its impact on the couple relationship need to be
addressed along the whole trajectory of their experience of surgical treatment for prostate cancer.
The importance of supporting couples and, in particular, partners during different phases of
illness has been already described (Northouse, Mood, Schafenacker, et al., 2007) in the context
of distress and appraisal of illness. This study‟s finding underscores the importance of attending
to intimate relationships as well. Preparation for sexual changes can be anticipated and
rehabilitation options discussed as a way of empowering couples to participate in their own

95

sexual recovery. After surgery, couples need support, and some need intervention as they
navigate the path toward sexual recovery through extended periods of disappointment and
uncertainty. The large variability in function after the surgery should be noted as, at least in part,
the reason why it is difficult to predict for men and partners how each individual will recover. At
the same time, imparting to couples information about rehabilitation activities can have an
empowering effect during the prolonged waiting period.
Couple sexuality, and partners‟ concerns in particular, have not been addressed
proactively in current usual care. Yet attention to sexual concerns and partners is necessary if the
couple is to recover sexual intimacy. Social workers are attuned to the family context when
working with patients with cancer. Addressing sexual concerns, however, is not one of the
competencies typically attained in social work education (Zebrack, Walsh, Burg, Maramaldi, &
Lim, 2008). The findings of this study strongly suggest that acquiring such competency would
strengthen social workers‟ ability to empower men with prostate cancer and their partners as they
work toward regaining meaningful, rich lives after definitive treatment for prostate cancer.
Implications for Research
This small pilot only begins to lift the veil from the struggles that couples experience as they
cope with the sexual side-effects of surgery for prostate cancer. A large prospective study is
needed that strives to learn about the changes not only in sexual function and dyadic adjustment,
but also in the partner‟s experience and the couple‟s coping. In addition, a thorough investigation
is necessary of the availability of insurance coverage vis-a-vis clinical recommendations for
rehabilitation of sexual function and sexual intimacy. Patients and partners are set up to
experience distress when their resources fall short at a time when they are encouraged by their
survivorship care team to work on sexual recovery. A wholistic approach to research should

96

encourage not only the development and testing of interventions for the physiologic,
psychological, and couple level issues: it should assess those practical aspects of the recovery
that can inform insurance companies and policy makers about the full extent of the needs of
patients who are recovering their intimate lives after surgery for prostate cancer.
Conclusion
Although men‟s erectile function improves with time, men do not reach sufficient
function not to need aids to erections and couples cannot return to familiar sexual interactions.
Both men and partners experience dissatisfaction with their sexual relationship. Female partners‟
sexual dissatisfaction, in combination with the stress of low income, can affect negatively
couples‟ satisfaction with their relationship.

97

CHAPTER V
INTEGRATION OF FINDINGS
The purpose of the dissertation was to develop an empirically based model of couples‟
sexual recovery after surgery for prostate cancer. The extant research literature has described the
significant problems that men and partners encounter as a result of erectile dysfunction, a sideeffect of the surgery, and their difficulty coping emotionally and in their couple relationships
(Bokhour, Clark, Inui, Silliman, & Talcott, 2001; Bokhour, Powel, & Clark, 2007; Couper,
Bloch, Love, Duchesne, et al., 2006; Couper, Bloch, Love, Macvean, et al., 2006; Hedestig,
Sandman, Tomic, & Widmark, 2005; Sanda et al., 2008; Tanner, Galbraith, & Hays, 2011;
Wootten et al., 2007). Although there have been attempts to describe the effect of surgery for
prostate cancer on sexuality (Bober & Sanches-Varela, 2012; Tierney, 2008; Wittmann, Foley, &
Balon, 2011), there is no coherent description of the overall experience of the impact of erectile
dysfunction on couples, and no understanding about how the couples think about the recovery or
what actions they take to cope with the physiologic change in practical terms, emotionally, and
in the relationships. The partner‟s response to prostate cancer has been studied to some degree,
but the partner‟s role in the sexual recovery has been viewed primarily as a factor in the man‟s
sexual recovery, only somewhat in terms of the partner‟s own authentic experience (Moskovic et
al., 2010; Shindel, Quayle, Yan, Husain, & Naughton, 2005; Soloway, Soloway, Kim, & Kava,
2005). The few studies that describe partners‟ responses have viewed partners as helplessly

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adjusting to the sexual dysfunction and giving up sex either in the context of gratitude for cancer
survival or with deep grief, even trauma (Bruun, Pedersen, Osther, & Wagner, 2011; Tanner,
Galbraith, & Hays, 2011; Thomas et al., 2012). Finally, the research literature addresses neither
the process of recovery nor the meaningful end-point at which couples can say that they have
recovered their sexual intimacy.
This dissertation combined qualitative and quantitative methodologies to begin to answer
the questions raised by the gaps in the research: what does the recovery look like; how do
couples anticipate and then cope with erectile dysfunction; what is the role of the partner, and
how do couples define return to sexual intimacy; is the process of grief and mourning a relevant
variable in the recovery? How does men‟s and partners‟ sexual function, sexual satisfaction, and
dyadic satisfaction change over time? Starting with a biopsychosocial theory of sexuality (WHO,
2002), the theory of ambiguous loss with a grief and mourning response (Boss, 1999; Parkes,
1971), and a definition of recovery adapted from the field of substance abuse
(http://www.samhsa.gov/, 2011), the three research studies provide individual contributions to
the research literature on couples‟ coping with prostate cancer. Together, the tree studies‟
findings coalesce into a rich, comprehensive description of couples‟ sexual recovery after
surgery for prostate cancer which helps conceptualize a model of the recovery.
The purpose of Chapter I was to review the literature on couples‟ coping with prostate
cancer and to position the dissertation research in such a way that it could begin to fill an
identified gap in knowledge. Relevant concepts were defined and a preliminary model of
couples‟ sexual recovery, based on a biopsychosocial theory of sexuality and grief theory, was
proposed. The significance of the dissertation research was stated.

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In Chapter II, the first dissertation study focused on couples‟ common experiences of
anticipating and living with the sexual side-effects of the surgery for prostate cancer. A
substantial sample of 20 couples described in semi-structured interviews their thoughts and
feelings about the anticipated sexual consequences of surgery for prostate cancer and their lived
experience of the work of sexual recovery after the surgery.
During the pre-operative period, while their first concern was the eradication of cancer,
couples were aware of the side-effects and the need to cope with them afterwards. Their
reactions ranged from sadness about anticipated sexual losses to a preference not to anticipate
and cope as the experience unfolded. The participants confirmed the findings of several previous
studies which had demonstrated that patients had over optimistic, even unrealistic expectations
of the recovery of erectile function despite pre-operative education about the consequences of
surgically induced damage to the nerves that govern erections (Symon et al., 2006; Wittmann et
al., 2011). In this study, it was shown that partners were aligned with the men in their
expectations; men and partners mutually reinforced each other. Men and partners‟ mutual
influence has been noted in other research (Ko et al., 2005).
Unlike in previous studies, this study uncovered possible explanations for these
expectations: couples‟ firm faith in the resilience of their long-term relationships with each other
and success in overcoming previous challenges, as well as their high confidence in the skill of
the surgeon. For some couples, this meant a hope that, if the man‟s erectile function were to
recover, they would not have to use erectile aids during the recovery period. In this way, couples
underestimated the dramatic influence of nerve damage that takes place even in the most
skillfully performed prostatectomy. Psychologically, it is also possible to infer that the high
expectations represent a defense against loss which is present in the early stages of grief,

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particularly if the grief is ambiguous because the outcome is uncertain and cannot be predicted
for the individual (Boss, 1999). After surgery, couples‟ description of their efforts to cope gave a
foreshadowing of the kinds of strengths and vulnerabilities that bode well or poorly for the
recovery of sexual intimacy.
It must be stressed that the recovery is arduous from a physiologic, psychological, and
relationship point of view. Couples described the recovery as “work” and listed a number of
challenges that they had to overcome: dislike of unspontaneous sex and the use of sexual aids,
men‟s loss of sexual confidence and confidence in themselves as men, the partners‟ uncertainty
about how to be sexually helpful, and the awkwardness of sexual relating in the new
circumstances. Couples that appeared to be coping well engaged in ongoing sexual activity,
communicated reasonably well, and accepted lower sexual function and erectile aids. Female
partners in those couples were engaged sexually regardless of menopausal status. This finding
conflicts with previous research which regards post-menopausal women‟s sexual function as a
potential hindrance to men‟s recovery of erections (Moskovic, et al., 2010; Shindel, et al., 2005).
Couples that seemed poised for a more difficult recovery had one or more of the following
challenges: pre-existing or new relationship problems, pre-existing sexual difficulties, inability
to overcome dislike of unspontaneous sex and dislike of aids to sexual function, persistent
urinary incontinence, financial worries, and partners who had a low interest in sex, regardless of
menopause. In at least two cases, a need for additional treatment put a pall on sexual recovery
despite a satisfactory couple relationship because additional treatment reduced the man‟s sexual
sensitivity. It is therefore important to recognize that sexual.
The influence of urinary incontinence, of additional treatment and other clinical
conditions such as comorbidities (not significantly present in this sample, but likely true of aging

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couples) should not be underestimated, as it colors the more specifically sexual issues by
introducing stress and distraction from the sexual recovery.
The role of grief and mourning was identified as the process that begins after diagnosis
and continues after surgery as couples cope with their sexual readjustment. The ability to grieve
and mourn varied in the couples who participated in this study. For some couples, grief was a
difficult, but tolerable aspect of the experience, a sorrow that was shared and accepted. For those
couples, sexual losses became a challenge, but their ability to accept their feelings and their
changed sexual relating led to greater emotional intimacy and a resumption of a meaningful
sexual relationship. While they continued to be highly aware of their new sexuality and needed
to reassure each other, these couples began to emerge with a sense of accomplishment in the
second year of the recovery. One can conclude that these were the „resilient‟ or „thriving‟
couples. The research literature on post-cancer thriving and resilience describes factors such as
an ability to come to terms with loss with an optimistic outlook and a newly constructed
meaning, an ability to reframe and normalize what is negative, and an ability to continue to be
active on one‟s own behalf as critical to successful adjustment (Gannon, Guerro-Blanco, Patel, &
Abel, 2010; Parry & Chesler, 2005). The presence or availability of a supportive significant
relationship has also been associated with the ability to thrive in cancer survivorship (Ruini,
Vescovelli, & Albieri, 2012). The couples who were able to thrive demonstrated flexibility in
their sexual expression and the ability to do so was meaningful to them, which agrees with
Reese‟s model of post-cancer coping with sexual changes (Reese, 2011; Reese, Keefe, Somers,
& Abernethy, 2010).
Several couples found the sexual loss or changes in the sexual relationship sufficiently
overwhelming that they did not move through grief, but remained deeply affected. These couples

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did not recover their sexual relationships and continued to mourn intensely. Several couples who
experienced relationship difficulties found sexual recovery harder to attain. Their grief
encompassed both the sexual changes and the relationships. From these findings, it is possible to
conceptualize grief and mourning as a mediating process through which couples move with
greater or lesser success toward a new sexual paradigm. It is possible that these couples were
experiencing „complicated mourning‟ (Rando, 1993), a condition that prevents normal grief from
proceeding. This aspect of the grief experience needs further investigation.
Couples defined the end-point of sexual recovery in various ways, but the most
compelling definition that did not focus on erectile function per se was one in which both the
man and the partner could return to unselfconscious sex. Men expressed gratitude for the
support they received from their partners. Partners, while at times frustrated, loyally reassured
the men and tried to be helpful in any way they thought was needed, including being sexually
available as men attempted to resume sexual activity. The role of the partner, an important aspect
of the recovery, was examined in depth in the second study on the partners‟ role in the couple‟s
sexual recovery.
Chapter III describes the findings of the second study. The candid discussion of the
partner‟s role in the couple‟s sexual recovery was able to proceed because men and partners were
interviewed separately. Ten men and nine partners participated. For the most part, men and
partners agreed on many aspects of the role such as emotional support, help with appointments,
and availability for sexual activity. They also agreed on seeing partners‟ own sexual interest as
particularly important to the success of the process of recovery, presumably by giving men
confidence that the partners were not offering sexual interest purely as a part of rehabilitation.
This was true of partners who were post-menopausal and of the partner who was gay and a

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prostate cancer survivor himself as well. Clinically, sex therapists know that women with low
post-menopausal desire can continue to enjoy sex because their capacity for pleasure and for
orgasms remains intact for most. Sexual interactions no longer rely on a hormonal surge. Instead,
they become intentional, and women may need sexual aids such as lubricants and vibrators. Not
all men and women are fully aware of this. As characterized by Basson (2004) in her description
of female sexuality, intentionality is actually a part of female sexual expression even before
menopause, because women are exquisitely attuned to environmental distractions and the quality
of their couple relationship; as a result, they come to sexual interactions based on a decision
rather than physiologic desire (Basson et al., 2004). After prostate cancer, this mode of sexual
expression also becomes relevant to men who are distracted by worries about performance
because they are unable to achieve a spontaneous erection. In the sample of the „partner‟ study,
intentional, communicative, engaged pre-operative couple functioning that entailed pleasurable
sexuality augured well for the couple‟s sexual recovery.
In this study, partners spoke candidly about their sexual needs and needs for support,
which had been put on hold for most. Men were unaware of the partners‟ needs. Neglect and
self-neglect of partners‟ needs is an issue that can become a problem in the long run and
contribute to partners‟ distress.
As was noted in the first study, the recognition of the ability of post-menopausal partners
to enjoy sexual pleasure in the context of couple relationships is particularly important because
the research literature in prostate cancer is replete with doubts about the viability of female
sexuality after menopause. Yet in this study, female interest in sex regardless of menopause was
one of the critical mediators of the effectiveness of the role of the partner in the couple‟s sexual
recovery, as perceived by both men and partners. Given the recognition of the significance of

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the partner‟s role, understanding the partner‟s needs becomes a necessary aspect of the
evaluation of the couple‟s ability to work toward renewing sexual intimacy. To this point, the
research literature has not been oriented toward addressing partners‟ sexual needs or the need for
men to know about and have empathy for them. This research discovered that partners tend to be
naturally protective in the attempt to provide unstinting support to men who struggle with the
loss of sexual function, but they have unmet needs which can quickly transform into a burden if
not recognized and addressed. It is therefore in the best interest for the research paradigm to
recognize partners‟ post-menopausal sexual viability and to adopt a stance of mutuality when
learning couples‟ sexual recovery after prostatectomy.
The survey findings of this mixed methods study were described in Chapter IV. They
focused on change in functional outcomes: sexual function, sexual satisfaction, and dyadic
satisfaction. They were not intended to make an inference about the population of surgically
treated men with prostate cancer and their partners. Rather, they corroborated what the
interviews so eloquently uncovered: even as men began to recover erectile function in the second
year after surgery, they continued to be dissatisfied with their ability to perform, and their
feelings about their couple sexuality suffered the most. The partners were also experiencing
sexual dissatisfaction which did not rebound in the second year. The surveys revealed that it was
female sexual satisfaction that governed most significantly how they appraised their couple
relationship. Couper and colleagues (2006b) speak to the temporal misalignment in the men‟s
and female partners‟ relationship satisfaction as time proceeds from prostate cancer treatment
(Couper, Bloch, Love, Duchesne, et al., 2006b). At the end of the first year after treatment,
partners became dissatisfied with the relationship. We now have a potential explanation why this
might happen. If partners are willing to forego sexual satisfaction for some time, they may not be

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willing to forego it forever without a major adjustment in expectations. If the adjustment fails,
partners may experience intensely the chronic nature of the loss of familiar sexuality in the
relationship. Supporting their „patient‟ partners may become a burden, and finally, relationship
dissatisfaction may ensue.
The impact of income, when added to female sexual satisfaction in the dyadic
relationship, is important, but the meaning of this combination of effects is not fully obvious. It
is difficult to draw specific conclusions from this finding. The only research that addresses the
financial aspects of sexual recovery after surgery of prostate cancer is the two studies that
suggest that the cost of aids to erections is a barrier to sexual recovery (Lee, Cheetham &
Badani, 2009; Teloken, Mesquita, Montorsi & Mulhall, 2009). This is a much under-appreciated
aspect of the sexual recovery: insurance coverage is either minimal or non-existent, and couples
often do not realize it when they plan treatment for prostate cancer. This is a familiar concern in
clinical practice. However, it is not clear that the current findings represent these concerns or
whether they may be related to other aspects of financial concerns.
Building a Theoretical Model of Couples’ Sexual Recovery
After Surgery for Prostate Cancer
The goal of this exploratory research was the development of a theoretical model of
couples‟ sexual recovery after surgery for prostate cancer that could be tested further in
confirmatory research. The findings reported in the mixed methods study described in Chapters
II, III and IV suggest a conceptualization based on couples‟ own perception of their experience,
as demonstrated in the interviews, and on the surveys that documented change in function and
reinforced the interview narratives. In this model, grief and mourning mediate couples‟ sexual
recovery after surgery for prostate cancer. Pre-existing couple relationship, surgery outcome,

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couple coping, clinical variables such as urinary incontinence and comorbidities, as well as
income moderate the sexual recovery of the couple and dyadic satisfaction. The role of the
partner, mediated by the partner‟s interest in sex, regardless of menopause, moderates couple
coping. Couple coping affects and is affected by the grief process (Figure 5.1). The variables in
this model can be operationalized, and the model can be tested in a hypothesis-driven
quantitative study with a large and diverse sample. If confirmed, this model can serve as a basis
for the development and testing of interventions aimed at helping couples recover their intimate
lives.
In developing this conceptual model, it is important to recognize that sexual loss begins
to happen to couples prior to surgery for prostate cancer. Both men and partners came to prostate
cancer with those losses to some degree, as was demonstrated in the study sample and in
research on sexuality and aging (Lindau et al., 2007). Cancer treatment has a tendency to make
the already occurring trend more precipitous, bringing with it more intense feelings and a greater
need for creative adaptation. It is not surprising that some of the participants conflated the loss of
erectile function with aging. Although some may consider this to be a form of denial, it can also
be seen as adaptive coping with the inevitable decline that is experienced in so many areas of
functioning during the process of aging. It is important to retain this perspective when designing
research and interventions for couples who are coping with the sexual side-effects of prostate
cancer surgery.
Strengths of the Dissertation Research
This mixed methods study followed men and partners longitudinally from before the
surgery to 18 months after surgery on average. Based on interviews at three time points and data
from outcome surveys, the author was able to construct a model of couples‟ sexual recovery after

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surgery for prostate cancer that can be operationalized and tested further quantitatively with a
larger, diverse sample. The sample was large enough to permit theoretical saturation of the data
Figure 5.1 Conceptual Model of Couples’ Sexual Recovery after Surgery for Prostate
Cancer

Surgery
side-effects

Diagnosis

Pre-existing couple
relationship and
couple
biopsychosocial
sexuality

Anticip.
Grief

Grief

Couple
coping

Exposure/psychosocial transition

Bio
psychosocial
sexual
recovery and
dyadic
satisfaction

Income

Outcome
Mediator
Partner‟s
sexual
interest

Moderator

Urinary
recovery and
comorbid
conditions

Partner
role

based on semi-structured interviews. The survey data provided preliminary findings about the
trajectory of couples‟ sexual function, sexual satisfaction, and dyadic satisfaction. The study
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findings confirmed some previous research in terms of the challenges of the recovery for the
man, the partner, and the couple. The findings extended the extant research by identifying grief
and mourning as a process through which couples recover more or less successfully. The
findings also highlighted with greater depth the understanding of the role of the partner‟s
sexuality in the couple‟s sexual recovery. As the research moves forward, the recognition of the
couple as the most appropriate unit of observation has been confirmed, and the need to view the
partner as not just an instrument in the man‟s sexual recovery, but as a legitimate stakeholder in
her or his own right has been clarified.
The significance of this research extends beyond couples‟ sexual recovery after prostate
cancer. The model, if confirmed, can be adapted to other cancer groups as well as to patients and
partners who cope with other chronic illnesses. Grief and mourning as a process in sexual
recovery are likely to be universally present and couples‟ pre-existing relationship factors as well
as income are likely to have a similar influence. It is the moderating effect of the illness, its
treatment, and the partner role that may need to be modified.
Limitations of the Dissertation Research
As an exploratory study, this research is limited to transferability of the findings to the
population of prostate cancer patients and their partners. Although the findings are quite
compelling, it is not possible to draw an inference at a population level. The quantitative
findings are particularly limited by the small size of the initial sample and subsequent attrition.
The sample was very homogeneous in terms of sexual orientation, ethnicity, race, income, and
education. The sample composition is difficult to overcome, given the make-up of the
community within which the research is conducted. This limitation calls for a larger,

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confirmatory study to be conducted with a multi-site sample if possible. Oversampling for
ethnic and sexual minorities may be necessary.
The survey measures were limited in what they could ascertain. Future research should
include a definition and measure of couples‟ coping during the recovery period that would give
insight to the way in which members of the couple support each other. This research has
empirically described behaviors and attitudes that are important aspects of the definition.
However, a „couple‟ coping definition needs to include the mutual influence of the members of
the couple.
Finally, men continue to recover erectile function for two years and longer (Rabbani et
al., 2010). This study followed couples through the most difficult period of sexual recovery. A
longer study follow-up would have given a clearer sense of the couples‟ ultimate coping and
adaptation.
Implications for Social Work Practice
Men who plan surgery for prostate cancer and their partners share a trajectory which
often has an excellent outcome in terms of cancer control, but together enter uncharted territory
as they experience recovery from the sexual side-effects of the surgery. Social workers typically
help patients navigate the psychosocial experience of cancer. In the process, they learn about the
biology of the cancer and its treatment as a way of supporting patients‟ self-determination in
decision-making, treatment adherence, emotional coping of the individual and the family, and
resource management. In prostate cancer, social workers, in order to be effective, will have the
role of recognizing the challenges of the patients‟ biopsychosocial sexual recovery even before
the patient and partner recognize them. Currently, social workers are not prepared in their
graduate programs to address sexuality, and sexual health assessment is not one of the typically

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expected social work competencies (Zebrack, Walsh, Burg, Maramaldi, & Lim, 2008). Social
workers should seek training that would provide them with sufficient initial awareness of
sexuality issues in cancer to be able to be helpful to their patients with prostate cancer and their
partners.
Early preparation for the side-effects and rehabilitation activities enables patients and
partners to conceptualize a period of recovery which may be challenging but will have its
rewards. Men and partners can be taught that sexual recovery is a couple experience which
includes physiologic rehabilitation, emotional coping, and changes in sexual intimacy that have
to be approached with an open mind and an attunement to a process rather than an outcome.
Promoting pleasure and flexible sexuality can take pressure off on-going couple intimacy while
nerves that govern erections, damaged by surgery, slowly recover in the course of two years.
After surgery, social workers can support couples in the work of sexual recovery by opening
access to relevant resources, facilitating the grief process, and recommending help from a
qualified sexuality counselor or therapist where indicated. Awareness that couples can
experience challenges and barriers, such as pre-existing couple difficulties, financial problems,
and uncertainty about how to proceed, is necessary so that the social worker can screen couples
for potential problems with sexual recovery. Attention to grief work can help couples cope with
resistance to the more awkward aspects of the sexual recovery and free them to take advantage of
helpful resources.
Although the role of the caregiver is increasingly recognized as critical to the patient‟s
good outcome, in this case, the role of the partner in the sexual recovery is two-fold and can
result in double distress for the partner. The partner‟s post-menopausal status may need to be
discussed to ascertain the partner‟s sexual interest and viability. Partners, if interested, may need

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education about how to maintain healthy sexuality after menopause. Supporting partners and
validating their own individual needs can be a positive experience for the couple, as the partner‟s
dissatisfaction can be influential and prognostic for the couple‟s sexual recovery,
Future Research
There are several research steps that should be undertaken, based on the development of a
conceptual model of couples‟ sexual recovery after surgery for prostate cancer. The model
should be confirmed and validated with a larger, more diverse cohort of prostate cancer survivors
and partners. It would be preferable to use a community sample rather than one derived from
university settings, as the use of a community sample would make the inferences based on the
model more valid.
A screening measure that will help identify couples who desire to work on sexual
recovery and may need assistance, as well as couples at risk for poor sexual recovery, can be
developed based on these findings: Most of the couples in this study indicated that sexual
recovery was important to them; yet the road to recovery of sexual intimacy was by no means
clear to them. Couples who function well overall may simply need to be educated about the
biopsychosocial aspects of sexual recovery and about the grief process. They can be alerted to
potential pitfalls along the way. Potential barriers such as relationship problems, complicated
grief, already problematic sexual difficulties related to aging, and financial concerns can be
identified with a screening measure and couples can be supported in order to overcome them.
Primary, oncology, and urology providers, as well as social workers who work with prostate
cancer survivors, can use a screening measure to help direct patients and partners toward
information or qualified professionals who can help them maintain or improve quality of life

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after treatment for prostate cancer. A screening measure developed from this research can be
easily used in other cancer or chronic illness settings.
Further research is needed to evaluate partners‟ needs. While this research began to
uncover partners‟ sexual and support needs, their poorly defined role needs to be further
investigated so that couples can be helped to have realistic expectations not only of the return of
erectile function, but of each other‟s participation in the sexual recovery. The legitimacy of the
partners‟ concerns and needs will be supported if they continue to be included in the research on
couples who are recovering sexual intimacy after prostate cancer treatment. It can lead to a shift
in patients‟ and providers‟ perspective on the recovery from the patient to the couple, thus
recognizing the need for mutuality if a couple‟s sexual recovery is to succeed.
The impact of the financial stress related to the cost of penile rehabilitation and sexual
aids should also be further investigated, particularly in the context of the cost of penile
rehabilitation and erectile aids. A survey of patients‟ experience with insurance coverage and
personal financial outlay would help define the financial burden, as well as the extent to which
cost can become a barrier to couples‟ sexual recovery.
The development of a measure of sexual loss would be most useful in evaluating couples‟
responses to sexual changes after cancer treatment. Wilmoth (2001), in an effort to quantify
sexual loss due to breast cancer treatment which in many cases included mastectomy, pioneered
the recognition that sexual loss is a significant aspect of breast cancer survivorship that should be
addressed (Wilmoth & Tingle, 2001). Building on her research, a measure of sexual loss that
could be used across cancers would help researchers to identify and understand the impact of
cancer treatment on couples‟ sexual relationships.

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Finally, and most importantly, interventions that support couples‟ recovery of the
biopsychosocial aspects of sexual intimacy, with attunement to the grief and mourning process,
should be developed and tested so that support for couples‟ recovery of sexual intimacy after
surgery for prostate cancer can become an accepted and available aspect of comprehensive care
for prostate cancer survivors. Psycho-education about the recovery that is offered pre-operatively
begins the process of supporting couples even as they anticipate surgery. Interventions that
address sexual function of both members of the couple, facilitation of the grief process, and help
to broaden couples‟ sexual repertoire and sexual communication will address the
biopsychosocial aspects of the sexual recovery. Timing of interventions, as well as dose at
different time points, should be ascertained in order to use resources optimally throughout the
adjustment period after prostate cancer treatment.

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APPENDICES

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APPENDIX I
SEMI-STRUCTURED INTERVIEW GUIDES
Couple Semi-Structured Interview – Pre-Op
1. As you are getting ready for surgery, can you describe your thoughts about it and any
concerns?
2. Are you aware that you will be experiencing side-effects that affect urinary control and
the ability to have erections? What are your thoughts about those side-effects?
3. What do you expect will happen to you sexually?
4. Can you imagine yourself with a flaccid penis? What would it be like?”
5. Do you think that this affects just the man or both of you as a couple?
6. Are you both on the “same page” with respect to interest and willingness to do the sexual
and emotional work which might help recovery?
7. How do you communicate as a couple about sexual interactions?
Prompts
i. In words, by touch, by sound?
ii. Has your way of communicating worked for you
8. Have you thought about how you will cope emotionally with the sexual changes and what
would be helpful in coping?
9. If intercourse were not possible after surgery, how do you expect that it would it affect
you?
10. You have been told that there are things that can be done to keep the tissues of the penis
healthy. It is called „penile rehabilitation‟. What is your reaction to it?
11. Do you think you will be willing to do it after surgery?
12. You also learned about the way in which you can produce erections while you are waiting
for spontaneous erections to recover, e.g., the use of vacuum pumps, injections. or
suppositories. Although you cannot yet decide fully about their use at this time, in
principle, are these aids to erections something you will want to learn more about?
13. There are sometimes some costs involved in doing penile rehabilitation. Can you walk me
through how you might think about that?
14. Are you aware of what insurance might cover?
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15. Working on new sexuality after prostate cancer involves some experimentation, trying
new ways of stimulating for pleasure, perhaps new positions for sexual activity. How do
you think you might work with that idea?
16. Usually men and partners experience some feelings in reaction to the sexual changes.
Some men and partners have described feelings of grief (sadness, frustration, anger,
worry). Those are normal feelings. What do you think of that idea?
Prompts:
i. Are those feelings something you can imagine feeling?
ii. If so, can you express them to each other, share them?
17. Sometimes people seek help and see a sex therapist, especially when unsure about how
to re-connect sexually after the surgery? How does that strike you?
18. Would it make any difference to you if seeing a sex therapist required an extra visit or a
visit to another site such as a Sexual Health Center?
19. Would you be willing to pay for it if insurance did not cover?
20. Do you foresee anything that would make working on your recovery difficult?
Prompts:
i. Emotional
ii. Grief
iii. Depression
iv. Anxiety
v. Communication
vi. Knowledge about what to do
vii. Experimentation
viii. Protective buffering
ix. Lack of efficacy
x. Invasiveness
xi. Lack of spontaneity
xii. Urinary incontinence
xiii. Cost
xiv. Embarrassment or inconvenience at seeing sex therapist
21. Are there any other stressors that are affecting you? Can you tell me how?
22. What do you imagine will be the final outcome sexually?

Couple Semi-Structured Interview 3 Months Post-Surgery
1. Can you tell me about your experience of recovering your sexual relationship since the
surgery?
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2. Where are you from the point of view of bladder control?
Prompt:
Have urinary problems interfered with your efforts to get your sex life back?
3. What kind of information have you received to help you in your sexual recovery?
4. How is the experiment going – are you able to try new things sexually?
Prompt
What have you tried?
5. What kinds of techniques do you use to please each other?
Prompts
i. Has that been satisfactory?
ii. If not, what is still missing?
6. Have you been able to have intercourse? If yes, tell me about how you achieve erections
and how satisfied both of you are with them. If not, tell me what has made it difficult?
7. How does your sexuality compare to the way you were before the surgery?
Prompt:
If there is a difference, tell me what has changed and how you feel about it?
8. How are you doing emotionally with all the changes?
Prompts:
i. OK
ii. Grief
iii. Depression
iv. Anxiety
v. Apathy
9.

If sex is less satisfactory and/or less frequent, what do you see as the reasons for not
getting you back on track in a way that would work for both of you?
Prompts: (use only when couple exhausted own ideas)
i.
Lack of information
ii. Lack of efficacy/inability to achieve erections
iii. Lack of spontaneity
iv.
Excess invasiveness
v.
Side-effects of treatment
vi.
Embarrassment
vii.
Urinary incontinence
viii. Excess emotional work
ix. Discouragement after failure
x. Cost
xi. Unawareness of options
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xii.
xiii.
xiv.
xv.
xvi.
xvii.
xviii.

Need for experimentation
Anxiety and/or depression
Partner sexual concerns
Poor communication between partners
Avoidance of communication about sexual problems
Lack of motivation
External stressors

10. Have you sought any help regarding sexual concerns?
Prompts:
i. Where did you seek help?
ii. If so, was it helpful?
iii. How did you cover the cost?
11. Are you open to meeting with a couples‟ counselor for sexual issues? If not, why not? If
yes, why yes?
12. When you look back on your experience, is there information or guidance that would
have been important to you before surgery that you did not receive?
13. From what we talked about with both of you, can you envision any barriers that might
make sexual recovery difficult?

The Role of the Partner Semi-Structured Interview – Patient
So far in our study, most couples have told us that sexual recovery after prostate cancer
surgery is a „couple‟ experience, in other words, it affects the partner, not just the patient.
Today, I‟d like to ask you some questions about the role that a partner has, in your
experience, in the man‟s and couple‟s sexual recovery.
1. Can you walk me through the overall sexual recovery experience as it has been for you
and your partner?
Prompts:
i.
It would be helpful if I could have a sense of what happened to your
erections after surgery.
ii. Loss of ejaculation
iii. How was the experience of penile rehabilitation for you? Did you do
it?
iv.
Did urine leakage have a role in your sexual recovery?
v.
Post-menopausal partner‟s lack of interest
vi.
How often do you make love?

119

2. Has the way you and your partner make love changed? Can you talk about what has
changed?
Prompts:
i.
Less frequency
ii. Spontaneity
iii. Arranging for love making
iv.
Who initiates
v.
Use of aids his/hers
vi.
Repertoire – changed, expanded, diminished
vii.
Have you and your partner talked about the changes and how you
feel about them?
3. Some people would say that you have experienced some losses in your sexual
relationship with your partner. When we experience losses, we usually grieve them.
Do you think that you and your partner have experienced any such feelings?
Prompts:
i. Anger
ii. Sadness
iii. Frustration
iv. Hopelessness
v. Despair
vi. Uncertainty about the future of your sexual relationship
vii. Has your partner expressed anything like that?
4. Can you give me your impression of how you saw your partner participate in the
sexual recovery?
Prompts:
i. Sexual interest
ii. Scheduling appointments with your doctor/PT
iii. Your compliance with rehab activities
iv. Making sure you had time to be sexually intimate
v. Your rest
vi. Your moods/emotional support
vii. Manage your expectations
viii. Your frustration with recovery/calming influence
ix. Taking on your roles in finances, house responsibilities, elderly
parents support
5. What do you think went on for your partner sexually during that period? As far as you
could tell, did she have interest in sexual activity for herself?
Prompts:
i. Desire
120

ii.
iii.
iv.
v.
vi.
vii.

Involvement in sexual activity
Learning new repertoire
Orgasm
Satisfaction
Use of aids to sexual functioning
Words, sounds, facial expression, body movements

6. How do you and your partner feel about your sexual connection with your partner,
compared to before the surgery? Do you talk about that?
7. If you were to look back, what would you say your partner‟s contribution to your
sexual recovery as a couple has been? How would you summarize it? How do you feel
about her contribution?
8. Do you think your partner got anything out of having that role? What do you think that
„something‟ is?
9. Can you describe any hardship that your partner may have experienced as a result of
her role in your sexual recovery personally and as a couple?
10. Can you think of any kind of support that partners need during this period of sexual
recovery?

Role of the Partner Semi-Structured Interview – Partner
So far in our study, most couples have told us that sexual recovery after prostate cancer
surgery is a „couple‟ experience, in other words, it affects the partner, not just the patient.
Today, I‟d like to ask you some questions about the role that a partner has, in your
experience, in the man‟s and couple‟s sexual recovery.
1. Can you walk me through the overall sexual recovery experience as it has been for
you and your partner?
Prompts:
i. Is sexual recovery important to you? To your partner?
ii. What does sexual recovery meant to you?
iii. It would be helpful if I could have a sense of what happened to
your partner‟s erections after surgery.
iv. Where do you stand with regard to menopause- desire, pleasure,
aids
v. How was the experience of penile rehabilitation for your partner
and for you? Did he do it; was it uncomfortable?

121

vi. Do you, as a couple, have any sexual challenges related to urinary
incontinence or to anything else?
vii. Have you and your partner re-engaged sexually?
2. Can you tell me about the way your lovemaking changed after your husband‟s loss
of erections?
Prompts:
i. How is a sexual encounter initiated – who initiates?
ii. Using aids to sexual function his/hers
iii. Changes in sexual repertoire
iv. Talking during sex
v. Frequency
3. How have you and your partner reacted to the change emotionally? One could say
that you have experienced sexual loss. When people experience a loss, they grieve
what they used to have. Has that happened to you in this context?
Prompts:
i. Loss of spontaneity
ii. Loss of familiar sexuality
iii. Loss of sensation with a smaller penis or a penis that has a new
angle
iv. Loss of confidence
v. Feelings of sadness
vi. Anger
vii. Guilt about one‟s own pleasure
viii. Hopelessness
ix. Optimism
x. We‟re in it together
4. Did you and your partner share the feelings about the losses?
5. If you were to look back, what would you say your major contribution to your
partner‟s and to your sexual recovery as a couple has been? How would you
summarize it?
Prompts:
i. Making appointments with Dr./PT
ii. Encouraging his compliance with rehab. activities
iii. Making sure you had time to be sexually intimate
iv. His rest
v. His moods/emotional support
vi. His frustration with recovery/calming influence
vii. Being realistic/managing expectations
viii. Taking over roles such as house responsibilities, elderly parents
support
6. What went on for you sexually during that period?
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Prompts:
i. Did you have interest in sexual activity for yourself?
ii. Did you communicate to your partner about wanting your own
sexual needs during this time?
iii. Did you experience sexual pleasure during this time?
iv. If so, how did you communicate your own sexual pleasure?
(words, sounds, body movements, facial expression)
7. Is there a way you could describe what it is like to be a sexual partner to a man
who is worried about his erection?
8. How do you feel about your sexual connection with your partner now, compared
to before the surgery?
9. How do you think your partner feels about your contribution?
Prompts:
i. Sexually and otherwise connection now as compared to before
surgery
ii. Appreciates your contribution?
10. If you were to weigh the “benefits” and the “toll on you” that your role has taken,
what would you say?
11. What kind of help/support do you think partners need during the couples‟ sexual
recovery after prostate cancer?
Prompts:
i. Other partners
ii. Education about partner role
iii. Lack of pressure from medical providers
iv. Education about post-menopausal sexuality
v. Make the man understand that having sex is NOT a part of
penile rehabilitation

123

APPENDIX II
MEASURES
Charlson Comorbidity Method

Assigned weights for diseases

Conditions
Myocardial infarct
Congestive heart failure
Peripheral vascular disease
Cerebrovascular disease
Dementia
Chronic pulmonary disease
Connective tissue disease
Ulcer disease
Mild liver disease
Diabetes

1*

2

Hemiplegia
Moderate or severe renal disease
Diabetes with end organ damage
Any tumor
Leukemia
Lymphoma

3

Moderate or severe liver damage

6

Metastatic solid tumor
AIDS

* Assigned weights for each condition that a
patient possesses. The composite Charlson
Comorbidity Index score equals composite
score. Example: “chronic pulmonary” (1)
and lymphoma (2) equals a total score (3).
Dyadic Adjustment Scale – Full Scale – sample questions
Most people have disagreements in their relationships. Please indicate the approximate extent of
agreement or disagreement between you and your partner for each item on the following list.
Check the box under one answer for each item.

Always
Agree

Almost
Always
Agree

124

Occasionally
Disagree

Frequently
Disagree

Almost
Always
Disagree

Always
Disagree

Dyadic Adjustment Scale (Continued)
1. Handling family finances:
2. Matters of recreation:
3. Religious matters:
4. Demonstrations of
affection:
5. Friends:
6. Sex relations:

Female Sexual Function Index (FSFI)
Q1: Over the past 4 weeks, how often did you feel sexual desire or interest?
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q2: Over the past 4 weeks, how would you rate your level (degree) of sexual desire or interest?
5 = Very high
4 = High
3 = Moderate
2 = Low
1 = Very low or none at all
Q3: Over the past 4 weeks, how often did you feel sexually aroused (“turned on”) during sexual
activity or intercourse?
0 = No sexual activity
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q4: Over the past 4 weeks, how would you rate your level of sexual arousal (“turn on”) during
sexual activity or intercourse?
125

0 = No sexual activity
5 = Very high
4 = High
3 = Moderate
2 = Low
1 = Very low or none at all
Q5: Over the past 4 weeks, how confident were you about becoming sexually aroused during
sexual activity or intercourse?
0 = No sexual activity
5 = Very high confidence
4 = High confidence
3 = Moderate confidence
2 = Low confidence
1 = Very low or no confidence
Q6: Over the past 4 weeks, how often have you been satisfied with your arousal (excitement)
during sexual activity or intercourse?
0 = No sexual activity
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q7: Over the past 4 weeks, how often did you become lubricated (“wet”) during sexual activity
or intercourse?
0 = No sexual activity
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q8: Over the past 4 weeks, how difficult was it to become lubricated (“wet”) during sexual
activity or intercourse?
0 = No sexual activity
1 = Extremely difficult or impossible
2 = Very difficult
3 = Difficult
4 = Slightly difficult
5 = Not difficult

126

Q9: Over the past 4 weeks, how often did you maintain your lubrication (“wetness”) until
completion of sexual activity or intercourse?
0 = No sexual activity
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q10: Over the past 4 weeks, how difficult was it to maintain your lubrication (“wetness”) until
completion of sexual activity or intercourse?
0 = No sexual activity
1 = Extremely difficult or impossible
2 = Very difficult
3 = Difficult
4 = Slightly difficult
5 = Not difficult
Q11: Over the past 4 weeks, when you had sexual stimulation or intercourse, how often did you
reach orgasm (climax)?
0 = No sexual activity
5 = Almost always or always
4 = Most times (more than half the time)
3 = Sometimes (about half the time)
2 = A few times (less than half the time)
1 = Almost never or never
Q12: Over the past 4 weeks, when you had sexual stimulation or intercourse, how difficult was it
for you to reach orgasm (climax)?
0 = No sexual activity
1 = Extremely difficult or impossible
2 = Very difficult
3 = Difficult
4 = Slightly difficult
5 = Not difficult
Q13: Over the past 4 weeks, how satisfied were you with your ability to reach orgasm (climax)
during sexual activity or intercourse?
0 = No sexual activity
5 = Very satisfied
4 = Moderately satisfied
127

3 = About equally satisfied and dissatisfied
2 = Moderately dissatisfied
1 = Very dissatisfied
Q14: Over the past 4 weeks, how satisfied have you been with the amount of emotional
closeness during sexual activity between you and your partner?
0 = No sexual activity
5 = Very satisfied
4 = Moderately satisfied
3 = About equally satisfied and dissatisfied
2 = Moderately dissatisfied
1 = Very dissatisfied
Q15: Over the past 4 weeks, how satisfied have you been with your sexual relationship with your
partner?
5 = Very satisfied
4 = Moderately satisfied
3 = About equally satisfied and dissatisfied
2 = Moderately dissatisfied
1 = Very dissatisfied
Q16: Over the past 4 weeks, how satisfied have you been with your overall sexual life?
5 = Very satisfied
4 = Moderately satisfied
3 = About equally satisfied and dissatisfied
2 = Moderately dissatisfied
1 = Very dissatisfied
Q17: Over the past 4 weeks, how often did you experience discomfort or pain during vaginal
penetration?
0 = Did not attempt intercourse
1 = Almost always or always
2 = Most times (more than half the time)
3 = Sometimes (about half the time)
4 = A few times (less than half the time)
5 = Almost never or never
Q18: Over the past 4 weeks, how would you rate your level (degree) of discomfort or pain during
or following vaginal penetration?
0 = Did not attempt intercourse
1 = Very high
2 = High
128

3 = Moderate
4 = Low
5 = Very low or none at all

Sexual Experience Questionnaire (sex-Q)
Instructions:
For each of the following questions, place an “X” in the one box that best describes your answer.
Over the past 4 weeks,
1. How often were you able to maintain an erection for as long as you wanted to?
Never or
Almost Never
□

Rarely

Sometimes

□

Usually

□

□

Almost or
Almost Always
□

2. During sexual intercourse, how often were you able to penetrate your partner?
Never or
Almost Never
□

Rarely

Sometimes

□

Usually

□

□

Almost or
Almost Always
□

3. How much have you worried about whether you could get an erection?
Not at All
Worried
□

A Little Worried
□

Somewhat Worried

Very Worried Extremely Worried

□

□

□

4. How confident were you that you could get an erection when you wanted to?
Not at all
Confident
□

A Little Confident
□

Somewhat Confident Confident
□

□

Very Confident
□

5. How satisfied were you with the hardness of your erections?
Very
Dissatisfied
□

Dissatisfied
□

Equally Satisfied
and Dissatisfied
□

Satisfied

Very Satisfied

□

□

6. How satisfied were you with the duration of your erections?
Very

Dissatisfied

Equally Satisfied
129

Satisfied

Very Satisfied

Dissatisfied
□

and Dissatisfied
□

□

□

□

Satisfied

Very Satisfied

□

□

7. How satisfied were you with the level of sexual desire?
Very
Dissatisfied
□

Dissatisfied
□

Equally Satisfied
and Dissatisfied
□

8. How satisfied were you with your overall sexual activity?
Very
Dissatisfied
□

Dissatisfied
□

Equally Satisfied
and Dissatisfied
□

Satisfied

Very Satisfied

□

□

Much
Pleasure
□

Great Pleasure

9. How much pleasure did you get from sexual activity?
No Pleasure

Little Pleasure

Some Pleasure

□

□

□

□

10. How confident were you that you could satisfy your partner during sexual activity?
Not at all
Confident
□

A Little Confident

Somewhat Confident Confident

□

□

Very Confident

□

□

11. How often did you achieve mutual satisfaction with your partner?
Never or
Almost Never
□

Rarely

Sometimes

□

□

Usually
□

Almost or
Almost Always
□

12. How satisfied were you with your ability to control the timing of your ejaculations?
Very
Dissatisfied
□

Dissatisfied
□

Equally Satisfied
and Dissatisfied
□

Satisfied

Very Satisfied

□

□

Expanded Prostate Index Composite-Short Form – Sample Questions
1. Over the past 4 weeks, how often have you leaked urine? Circle one number.
More than once a day.........................1
About once a day...............................2
More than once a week..................... 3
130

About once a week........................... 4
Rarely or never..................................5
2. Which of the following best describes your urinary control during the last 4 weeks? Circle
one number
No urinary control whatsoever........... ............................1
Frequent dribbling.......................................................... 2
Occasional dribbling....................................................... 3
Total control................................................................... 4
3. How many pads or adult diapers per day did you usually use to control leakage
during the last 4 weeks? Circle one number
None ......................................................................... 0
1 pad per day..........................................................… 1
2 pads per day............................................................ 2
3 or more pads per day............................................... 3
4. How big a problem, if any, has each of the following been for you during the last 4 weeks?
Circle one number on each line.
No
Very Small Small Moderate Big
Prob.
Probl.
Prob. Prob.
Prob.
Dripping or leaking urine …......
0
1
2
3
4
Pain or burning on urination.....
0
1
2
3
4
Bleeding with urination.............
0
1
2
3
4
Weak urine stream
0
1
2
3
4
or incomplete emptying............
0
1
2
3
4
Need to urinate frequently during
the day.....................................
0
1
2
3
4
5. Overall, how big a problem has your urinary function been for you during the last 4 weeks?
Circle one number
No problem...................................... 1
Very small problem......................... 2
Small problem.................................. 3
Moderate problem........................... 4
Big problem..................................... 5
6. How would you rate each of the following during the last 4 weeks? Circle one number on
each line
Very Poor to None
Good
Your ability to have an erection? ...........................
1
Your ability to reach orgasm (climax)? .................
1

Poor Fair Good Very
2
2

3
3

4
4

5
5

7. How would you describe the usual QUALITY of your erections during the last 4 weeks?
Circle one number
131

None at all...........................................................................................1
Not firm enough for any sexual activity............................................ 2
Firm enough for masturbation and foreplay only.............................. 3
Firm enough for intercourse.............................................................. 4
8. How would you describe the FREQUENCY of your erections during the last 4 weeks? Circle
one number
I NEVER had an erection when I wanted one................................... 1
I had an erection LESS THAN HALF the time I wanted one............2
I had an erection ABOUT HALF the time I wanted one .................3
I had an erection MORE THAN HALF the time I wanted one..........4
I had an erection WHENEVER I wanted one.................................... 5
9. Overall, how would you rate your ability to function sexually during the last 4 weeks? Circle
one number
Very poor..............................................................1
Poor...................................................................... 2
Fair....................................................................... 3
Good..................................................................... 4
Very good............................................................. 5
10. Overall, how big a problem has your sexual function or lack of sexual function been for you
during the last 4 weeks? Circle one number
No problem........................................................... 1
Very small problem............................................... 2
Small problem....................................................... 3
Moderate problem................................................ 4
Big problem.......................................................... 5

132

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133

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