Abstract
Context—
Chronic illnesses such as kidney failure and diabetes and their treatments can affect people's identity, including their sexual identity. Little is known about patients' perspective on the effect of transplant on their sexual identity.
Objective—
To explore the sexual concerns of kidney and simultaneous pancreas/kidney transplant recipients.
Design—
Descriptive, qualitative.
Setting—
Major Midwestern university hospital.
Patients—
143 kidney and 70 pancreas/kidney transplant recipients; most were male (63.0%), married (64.7%), and white (83.7%), and the mean age was 49 years.
Intervention—
The qualitative data reported in this manuscript are derived from 2 larger quantitative studies of sexuality and quality of life in kidney and pancreas/kidney transplant recipients. The questionnaire in those studies included 2 open-ended questions that allowed participants to share their experiences as transplant recipients.
Main Outcome Measure—
Two faculty and 3 students did a conventional content analysis on patients' responses to the open-ended questions. Codes were extracted from the responses and then themes were created that best represented the codes.
Results—
Participants shared how sexual concerns affected their identity as sexual beings after transplant. Based on the responses to these open-ended questions, 4 themes were identified: sexual functioning, health care concerns, relationship with partner, and appearance changes. The study results indicate the need for improved education and provider-initiated dialogue related to sexuality after transplant.
Identity is a complex and multifaceted concept that refers to the awareness of being oneself. This awareness changes within developmental processes and phases of life. Establishing a consistent identity is necessary for developing intimate relationships with others. Health crises may diminish one's positive sense of identity. 1 For example, chronic illnesses (eg, kidney failure and diabetes) and their treatments (eg, transplant) can have a significant effect on a person's identity, 2 including sexuality.3,4 Sexuality is a key component of identity 3 and is defined as a vital part of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction. 5 Unfortunately, sexuality after transplant surgery is often not addressed.6–8
For patients who have had a kidney transplant or simultaneous pancreas-kidney transplant, problems with sexuality have been associated with lower levels of life satisfaction.9–11 Studies on sexuality after transplant have been limited by a focus on sexual dysfunction such as erectile dysfunction. In addition, nearly all studies have relied on use of questionnaires that have patients rate their level of agreement/concern on a Likert-type scale.8–12 These quantitative studies do not provide the patients' perspective on the impact of transplant on their sexual identity.
In only 1 study 8 have researchers comprehensively examined the specific sexual concerns of kidney transplant recipients. Unfortunately, that study also relied on a questionnaire with close-ended items. Muehrer et al 8 provided information on specific sexual concerns but did not give information on how the sexual concerns affected the patients' identity. Therefore, to address this limitation, the purpose of this study was to use qualitative methods to explore sexual concerns among recipients of a kidney or simultaneous pancreas/kidney transplant.
Design, Sample, and Setting
The qualitative data reported in this article are derived from open-ended questions included in 2 larger quantitative studies that examined sexuality and quality of life in kidney transplant 8 and simultaneous pancreas/kidney transplant recipients. Both studies were conducted at a major Midwestern university hospital. Persons were eligible to participate if they had received either a kidney or a pancreas/kidney transplant at the hospital where the study was being conducted, were more than 18 years old, had a functioning transplant, were at least 6 months posttransplant, and could read and write English.
After receiving approval from the hospital's human subjects committee, the transplant clinic staff mailed all eligible participants a questionnaire packet and a self-addressed, stamped return envelope. The questionnaires varied slightly between the 2 studies but both contained a demographic questionnaire, measures of quality of life, and measures of sexual concerns. Return of completed questionnaires constituted implied consent. For a more in-depth description of the study methods, see Muehrer et al. 8 Two open-ended questions were developed and placed at the end of the questionnaire packet for both studies. These questions were developed to allow participants to share their experiences as transplant recipients. The questions asked:
“Are there any other sexual concerns or issues that we may have missed? Please list or describe.”
“Is there anything else you would like us to know about this important topic?”
A content analysis was conducted from patients' responses to these questions.
Data Analysis
The research team consisted of a nursing faculty member, 2 graduate students, and an undergraduate student. A faculty member with expertise in qualitative analysis was consulted to guide the analysis. A conventional content analysis as described by Hseih and Shannon 13 was implemented. Each team member individually read the qualitative responses and applied specific codes to indicate common responses among participants. A code is defined as “words from the text that appear to capture key thoughts or concepts.” 13 The codes for this study were kept verbatim and in complete sentence format. Data that did not fit with the overall purpose of the study regarding sexuality after transplant were not used in the coding process. The team met frequently to discuss and reconcile the extracted codes. After the codes were finalized, team members individually created themes or categories 13 that best represented the agreed-upon codes. Themes did not use verbatim data for their titles but instead used ideas presented across codes. These themes were discussed at length among the research team, and when conflict or differences of opinion arose, the group discussed and examined the patients' quotes further.
Subcategories were created by group members for each theme to ensure that the codes accurately expressed patients' responses. For example, the theme “relationship with partner” had 2 subcategories that included partner problems and supportive partner. Meetings were held to reach consensus about the subcategories. Individual group members reorganized codes to reflect appropriate subcategories and to create meaningful clusters of codes. This process was again reviewed and reconciled by the full group. Processes to enhance the trustworthiness of the data were established at the onset of the data analysis. Multiple members of the research team with varied research and clinical backgrounds were involved in the analysis process, and each independently reviewed the qualitative data to formulate preliminary themes. Members of the research team met frequently to support emerging themes, and an external faculty member with qualitative expertise reviewed these themes. An inquiry audit trail was completed that displayed a systematic collection of materials and documents related to the data.
Results
Sample
Three hundred seventy-four kidney transplant recipients and 146 simultaneous pancreas/kidney transplant recipients returned responses to the 2 larger quantitative parent studies. Of these, 143 kidney transplant recipients (38%) and 70 pancreas/kidney recipients (48%) responded to the open-ended questions. Most of the respondents were male (63.0%), married (64.7%), and white (83.7%), and they had a mean age of 49 years (range, 23–76 years). Fourteen percent of the sample reported that they were divorced, and another 8.7% indicated that they were not married but were in a relationship.
Sexual Concerns
Participants responded to both questions similarly, so the authors decided to combine the responses to both questions. Based on the findings from these open-ended questions, 4 themes were identified: sexual functioning, health care concerns, relationship with partner, and changes in appearance. Subcategories were created for all themes except for changes in appearance.
Sexual Functioning. The theme “sexual functioning” was the most frequent concern among respondents. Participants shared how their ability to perform sexually and their sexual identity had been changed after transplant. Subcategories for this theme explored specific concerns with erection, ejaculation, orgasm, sex drive/interest, medication effects, and improved sexual functioning. Concern with erection was one of the most prevalent subcategories among men. Many respondents reported the need to use phosphodiesterase inhibitors and other assistive devices such as penile injections. These treatments had variable effectiveness and included some limitations with insurance coverage. A participant shared his experiences with juggling various medications.
Antirejection meds post [transplant] cause high blood pressure (BP)—[I was] unable to get an erection post transplant and these BP meds do not help that fact. … [drug name] helps but insurance won't cover it and I can't afford it. (Kidney transplant recipient)
Respondents also shared concerns about ejaculation and reported that difficulty with ejaculation was a primary source of distress. Many men noted concerns of premature ejaculation and lack of semen upon orgasm. Some men directly stated that this was a change they have experienced after transplant. One participant said:
After my transplant, the amount of semen I produce is very little and [I] don't know why. Before transplant, the amount of semen during ejaculation was way above. (Pancreas/kidney recipient)
Although ejaculation remains most concerning to some, other respondents experienced anorgasmia. Concerns for these individuals included their inability to reach orgasm, prolonged time to reach orgasm, and an unsatisfying orgasm. “My inability to have orgasms bothers me a lot and is very frustrating.” (Kidney transplant recipient)
The fourth subtheme of sexual functioning is sex drive/interest. Many respondents answered that they lack the desire and libido to participate in sexual activity. Some directly attribute this to fatigue. Others used terms such as “adrenaline” and “drive” and described their absence leading to decreased participation in favorite activities, including sex. Several respondents noted that this caused turmoil in their current relationship and for others it inhibited their willingness to enter a new relationship. Another participant shared: “The reason I don't stay in a serious relationship with anyone is because of my lack of sexual drive and or pain experienced at times with intercourse.” (Pancreas/kidney recipient)
Medications have adverse effects on the sexual functioning of respondents. Many of the transplant recipients said they specifically had difficulty with blood pressure medications, antirejection medications, and antidepressant medications. The side effects most frequently discussed included vaginal dryness, loss of libido, inability to achieve orgasm, lack of erection, minimal ejaculate, and infection. One participant discussed how an antibiotic became a necessary part of sexual activity:
In my case, I am prone to UTIs [urinary tract infections] after having sex. I now have to take an antibiotic every time I have any sex or menstrual periods. Some females and males have the same difficulties and do not realize how to go about avoiding more infections. I recently found out that my way of avoiding UTIs is antibiotics. (Kidney transplant recipient)
Other participants noted an improvement in their sexual functioning, which they directly attributed to their transplant. For some, these improvements occurred only after being prescribed treatments or medications such as phosphodiesterase inhibitors. “[I] experienced increased sexual activity after transplant. Testosterone patch doubled volume and greatly enhanced sexual performance post transplant.” (Kidney transplant recipient)
Health Care Concerns. Participants discussed how concerns related to health care affected their sexuality. Health care concerns were the second most frequent theme discussed by participants. Subcategories for this theme include patients' questions, patients' suggestions, concerns about discussing sexuality with a health care provider, and questions about reproduction.
The subcategory with the most responses was patients' questions. Patients had questions about whether certain medications affected their sexuality, questions about treatments for their sexual concerns, and questions about what was “normal.” One participant asked:
What does 18 years of diabetes, dialysis, prednisone, transplant medications do to a man's penis? What can I take that is safe for me to bring it back to what it was, meaning size, diameter, and semen if it's possible? (Pancreas/kidney recipient)
Patients' suggestions was another common subcategory. Participants had suggestions about information that should be provided to patients and their partners about sexuality after transplant. They also thought that patients should be informed about potential sexual side effects of treatments. One participant stated:
I was not aware that some of the medication I am on could cause me to have trouble getting and/or maintaining an erection until I just happened to find a pamphlet at my family doctor's office about ED [erectile dysfunction]. I read that blood pressure medication can cause ED. I thought the problem was me, which was not good for my self-esteem. I now take [name of medication] to correct the problem, but it would have been nice to know about the sexual side effects before the damage to my self-esteem was done. (Kidney transplant recipient)
The third subcategory was concerns about talking with a health care provider about sexuality. Participants discussed worry over whether health care providers were comfortable or would be receptive to talking about sexual concerns. Others stated that they would discuss concerns only with certain health care providers and not with others or that they did not know how to bring up the subject. One participant discussed the ambivalence of their health care provider: “I have sometimes felt that my primary transplant doctor thinks I should simply be grateful to have a successful transplant.” (Pancreas/kidney transplant recipient)
The final subcategory in this theme was questions specific to reproduction. Some patients had questions or wanted more information about getting pregnant. Others had questions about the effects of medications on their baby. A participant asked: “What is the likelihood that my medications could have an effect on my ability to get my partner pregnant? Does the medication interfere with the production/quality of semen?” (Kidney transplant recipient)
Relationship With Partner. Participants shared how the status of their relationships with spouses or romantic partners affected their sexuality. This theme was the third most frequent one found. The relationship seemed to affect the attitude and outlook of the transplant recipient. Those who reported having a supportive partner wrote with a more optimistic tone about sexual concerns and their relationship, whereas those with partner problems had a more negative experience regarding sexual concerns.
Respondents' sexual concerns differed with the presence of a supportive partner. The tendency was that the emotional connection between the 2 partners outweighed sexual concerns, thus dampening problems or creating optimistic approaches to address them. Characteristics identified as a supportive partner included an understanding partner who accepts changes in appearance and physical side effects of the transplant and a partner who is involved in the transplant recipient's health care. Some stated that sexual activity has actually improved with the partner thanks to open and honest communication and the use of new approaches to their sex life. Others placed less importance on physical sex and more on showing affection (eg, hugging, cuddling, or kissing) and the emotional bond in the relationship. The following is an exemplar of the strength provided through the emotional tie of the romantic relationship.
I just pray that my sex drive stays strong. If it weren't for my wife and her unbelievable support, things may be different, I know that a lot of people may not have what we have, but I strongly believe that sexuality is 95% mental and 5% physical, when you don't have emotional support, your sex life is affected tremendously. (Kidney transplant recipient)
Overall, respondents with supportive partners reported fewer negative sexual concerns. This study alone cannot identify if transplant and its culminated sexual concerns caused partner problems or if, vice versa, partner problems before transplant contributed to increased sexual concerns after transplant. For those who reported partner problems, specific concerns consisted of termination of relationship, partners' complaints and frustrations, and the recipient's own dissatisfaction with the partner. For some respondents, illness and or transplant aggravated the relationship in a negative manner and culminated in divorce and, for some, infidelity. “My husband of 23 years divorced me when I became sick because he said I changed, so I basically gave up on relationships after that.” (Kidney transplant recipient)
Both transplant recipients and their partners expressed frustrations about adverse effects of the transplant on sexual functioning. For example, respondents stated that their partner complained about vaginal dryness, inability to maintain erection, and side effects of reduced sex drive and showed reduced interest in the transplant recipient partner. Transplant recipients also voiced frustrations with their partner. They reported sexual dysfunctions and physical changes in their partner that reduced ability to perform together sexually and sometimes affected their own interest. This participant reported dissatisfaction with the relationship: “Dissatisfaction with personal relationship leading to the avoidance of sex … Lots of emotional pain.” (Kidney transplant recipient)
For those transplant recipients who were not in a committed relationship, there was a reluctance or even fear of new relationships because of their sexual dysfunction. Stressors regarding a new relationship included both physical and emotional concerns. Physical concerns included body changes as well as the feelings of being unable to perform sexually. Emotional matters that were addressed included the failure of previous relationships, leading to “giving up” on finding a new one or fear that no one will accept their medical condition. “Fearful of getting in a relationship due to body changes and emotional changes.” (Kidney transplant recipient)
Changes in Appearance. The final theme was concerns about changes in appearance and how these changes negatively affected sexuality. This theme was the smallest and did not contain any subcategories. Participants discussed how the surgery itself or medications have affected their appearance and feelings of being sexually attractive to others. One participant stated:
My main issue is my appearance (scars, puffy face, acne, weight gain, hair growth). How can you find yourself sexually attractive with these issues? (Kidney transplant recipient)
Another said:
How we patients and partners see our own scarred bodies … The scar I have is now puckering like a curtain top and I have real hard issues with allowing my partner to see my body now—unlike before. (Pancreas/kidney transplant recipient)
Discussion
Patients who have had a kidney transplant or simultaneous pancreas/kidney transplant experience a variety of sexual concerns after transplant. Participants in this study shared how their sexual concerns affected their identity as sexual beings after their transplant. Relationship issues were often discussed by participants as they related to their own adaptation to sexuality after transplant.
In terms of sexual functioning, similar to previous research,8–12,14,15 participants in our study reported specific sexual problems such as erectile functioning, diminished libido, vaginal lubrication, and arousal. Participants also shared how their problems with sexual functioning affected their current relationship or impeded their confidence to embark upon new relationships owing to sexual limitations as well as changes in their personal appearance. This finding is similar to results reported in studies focused on sexuality issues among persons with chronic illness and how changes in physical appearance may decrease self-esteem. 3
The presence of a supportive partner was highly beneficial for participants, and an important finding of this study was that sexuality after transplant could be positive with enhanced communication between partners. Unfortunately, many of the participants who discussed partner issues reported having conflict within their relationship that stemmed from sexuality changes and side effects from various medications. In a prospective study of 81 women, Kralik et al 3 also noted the significant relationship changes that occurred among people with chronic illness and how some relationships adapt to changes in physical appearance and grow stronger, whereas others do not.
Medications are a necessary aspect of life for patients after transplant. But these medications often have side effects on sexuality that have not been sufficiently explored from the patient's perspective in previous publications. This finding is important for health care providers because transplant recipients are often taking several medications that can adversely affect sexuality, including blood pressure medications, antidepressants, and immunosuppressants. 16 Health care professionals prioritize the improvement of the disease process, and thus medication side effects may not be understood as problematic for patients' overall sexual well-being. 4 A discussion of both anticipated side effects from medications and how medications may be useful to improve sexual abilities is an important conversation for health care providers to initiate with patients.
Participants shared that they had many unanswered questions related to sexuality. Some expressed discomfort in sharing with their health care provider problematic issues related to their transplant procedure. This finding is common among research participants with chronic illness; many report that they do not initiate conversations that include questions about sexuality unless providers ask as a normal aspect of care.3,17 Discussing the sensitive topic of sexual difficulties was not viewed as a normal discussion with their physician, and they believed that physicians were not comfortable with these types of conversations. They expressed concerns about feeling embarrassment or not knowing exactly what to say in relation to their sexual difficulties. This lack of comfort on the part of health care providers to discuss sexuality openly has been found in other research that examines the educational needs of transplant patients. 18
Participants offered suggestions for improved health care education for transplant patients. Providing patients with information about potential sexual side effects of treatments as well as how to have a “normal” sex life were particularly important and highlight the need for health care providers to inform patients about sexuality after transplant. Time constraints during visits with health care providers after transplant underscore the need for health professionals to find innovative and user-friendly methods for educating patients, particularly after hospitalization. 19
Summary and Implications
This content analysis provided insight into the perspectives of kidney and pancreas/kidney transplant recipients' on their sexuality after transplant. The qualitative approach eliminated researchers' preconceptions of sexual concerns, and instead allowed participants to elaborate on their own individual sexual experience and identity after transplant. This method revealed the themes of sexual functioning, health care concerns, relationship with partner, and changes in appearance. Overall, the findings of this study emphasize the necessity of provider-initiated, open dialogue related to sexuality after transplant. Even when patients do not voice sexual concerns, they may feel less embarrassed to address sexual concerns if they arise when health care providers have initiated these conversations soon after transplant. When possible and appropriate, the patient's partner should be included in these conversations. Finally, the results of this study indicate the need for improved education about sexuality after transplant. Providers should provide information about potential sexual side effects related to medication and surgery and offer interventions to alleviate these side effects if available. This information should include both the physiological side effects as well as the identified mental/emotional side effects that may include changes in self-esteem and relationship with partner. Resources could even be Internet accessible or be incorporated into videos so that patients and their partners could access the information from home.
Limitations
By design, the parent study was quantitative. Although we were able to collect and analyze narrative data from a large sample, we were unable to ask follow-up questions or get confirmation from participants, as would have been done in a traditional qualitative approach. Future studies should use qualitative methods to explore sexual concerns among kidney and pancreas/kidney transplant recipients. A second limitation is the possibility of bias related to self-selection. 20 It is possible that individuals who had sexual concerns were more likely to respond to the survey than were those without sexual concerns.
Future Research
One area for future research is to conduct a prospective qualitative study. Such a study would allow researchers to get more in-depth answers from transplant recipients and to ask follow-up questions. A second area for future research is to conduct studies that include both transplant recipients and their partners to try to determine more definitively what factors may be protective in a relationship. Finally, little information is available about appropriate training for providers on how best to approach sexuality, including what factors facilitate or inhibit these conversations.
Footnotes
Acknowledgments
The authors thank the transplant recipients who participated in this study and Michael Armbrust, RN, Adam Karlan, RN, Jamie Myers, RN, MS, and Christine Lillesand, RN, MS, for their support.
Parts of this manuscript are based on a project supported by the National Institute of Nursing Research (grant No. 5F31NR009153-03, Muehrer, principal investigator).