Decomposing the Impact on Sexual Activity Scale
We also investigated, in a more descriptive fashion, the ways in which amputation may affect specific aspects of sexual activity, as measured by the individual items making up the Impact on Sexual Activity scale. As Table 2 shows, more than three fourths of the amputees in our study reported that their sexual activities were at least somewhat restricted by their amputation; 10% reported that they were currently not at all active sexually. About one third were at least somewhat dissatisfied with the amount of sex since amputation, and more than one fifth were dissatisfied to some degree with the quality of their sexual experiences since amputation.
One explanation for sexual activity declining after amputation is that, at some level, patients have internalized cultural scripts repudiating their sexual desirability or interest. In other words, it may be that interest in sex decreased because they perceived that they no longer fit the American model of the sexually young and ablebodied. Based on previous research, it might be expected that this effect would be stronger among older amputees (see, for example, work by Comfort, 1980; Kellet, 1991; O'Donohue, 1987, on sexual interest over the life span). Additional post hoc analyses revealed that age was not related to satisfaction with amount of sexual activity since amputation (r = .08, ns). However, being older was associated with being less sexually active (r = .46, p < .0001), feeling amputation had restricted sexual activity (r = .20, p c .04), and less satisfaction with the quality of sexual relations since amputation (r = .31, p < .003).
Click here to see table 2.
Thus, like the population in general, sexual activity was more limited in older than younger amputees. Older participants in our study were also more likely than younger amputees to perceive that amputation had caused their sexual activities to be restricted. Interestingly, older amputees did not appear to be either more or less satisfied than younger amputees vrith the amount of sex they were having, but they were more likely to be dissatisfied with the quality of their sexual experiences. This pattern of results suggests that restricted sexual activity was not entirely attributable to an age-related decline in interest in sex.
Receiving Advice about Sexual Activity after Amputation
Neither Impact on Sexual Activity nor Symptoms of Depression scores were associated with having received advice about sexual activities following amputation (see Table 1). We suspect this was due to low variability (floor effect) on this measure. Specifically, less than 10% of the sample (n = 7) had received any advice about whether they could or should engage in sex. However, six of the seven individuals who had received advice reported that it was helpful Although the number of people who had received advice was too small for comparative analyses between this group and those who had not received advice, it seemed worthwhile to look at these few individuals in a bit more depth.
Most (five of seven) were men. All were White, and all were married or living as married. They were relatively well educated, with more than half (four of seven) having gone to college; two had graduate degrees. Time since amputation varied widely, from 19 months to over 50 years (M = 19.9 years). Most frequently, these individuals had undergone amputation of a lower extremity (six of seven). Age varied from 36 to 70 (M = 66.9 years). These amputees were not depressed (M CES-D score = 9.4). All were still at least somewhat sexually active, with a 71-year-old man and a 60year-old woman reporting that they were very active. None of these seven individuals felt that their amputation had greatly restricted sexual activity, and most (four of seven) said that sexual activity was not at all restricted by amputation.
In many ways, our sample corresponded to the population of amputees in the United States. That is, most were older adults who had undergone removal of a lower extremity, frequently as a result of vascular disease. In addition, several of our findings were consistent with the results of earlier studies. Turning first to adaptation as measured by depressive symptomatology, as in previous research (Frank et al., 1984; Kashani et al., 1983; Williamson et al., 1994), aspects of the amputation per se (reason for amputation, type of amputation, time since amputation, and number of amputations) were either unrelated to depression or related in ways that were attributable to participant age. Additionally, like Kashani et al. (1983) and Williamson et al. (1994), we found few associations between demographic factors and symptoms of depression. A notable exception was marital status. Those who were married or living as married were less depressed
results consistent with literature demonstrating the importance of social support resources in the well-being of amputees (e.g., Pinzur et al., 1992; Thompson & Haran, 1983; Williamson et al., 1994). However, our findings go beyond those of earlier studies by suggesting that a major reason marital status is related to depression is that those who have a spouse or an equivalent partner perceive that amputation has had less negative impact on their sex lives. The value of having a supportive spouse or equivalent partner was further emphasized by comments made by participants in this study:
A 47-year-old woman who had lost her left leg above the knee in a childhood accident reported that the worst thing about her amputation was "not having a solid, longlasting intimate relationship."
A divorced 37-year-old man who was not currently in a close relationship stated that he would like to start "a dating/matching service" for amputees and asked for advice about how he might go about doing it.
Having lost her leg at the hip at age 7 because of complications following a severe burn, a 40-year old woman commented on her recent marriage to another lower extremity amputee: "The best thing I can think of is that I finally got in a relationship a lasting relationship and got married."
A series of studies of a variety of medically compromised populations has consistently shown that restriction of normal activities (e.g., shopping, visiting friends, engaging in sports and hobbies) operates as a pivotal factor in the association between health status indicators (e.g., pain and severity of illness symptoms) and depressive symptomatology (Walters & Williamson, 1993; Williamson & Schulz, 1992a, 1995a; Williamson et al., 1994). That is, pain and other illness syrnptoms appear to contribute to depression primarily to the extent that they restrict normal activities. Results of the current study suggest that sexual activity should be added to the list of activities that may become restricted by illness and disability and, in turn, contribute to symptoms of depression. As our earlier anecdotal data suggested (Schulz et al., 1991) and as hypothesized in the current study, substantial numbers of amputees (76%) perceived that amputation had a limiting effect on their level of sexual activity.
Age and Impact on Sexual Activity
Having established an association between amputation-related decreases in sexual activity and greater depressed affect, we then turned to identifying predictors of decreased sexual activity. Among the factors that emerged was age. Older age was related to more negative impact of amputation on sexual activity. Indeed, several participants commented on the fact that sexual activity had declined as they grew older:
One below-knee trauma amputee, a 69-year-old married man, wrote "Oh, to be young again" and "Hard to remember that far back" in response to questions asking about satisfaction with amount and quality of sexual activity since amputation. He also reported that he would like to be having much more sex but that both he and his wife were old.
Another man, an above-knee trauma amputee, said, "I was born in 1937, served in the US Army in Germany in 1950-54, and traveled around the States and Europe after the pill and before AIDS. I am now 57 and less [sexually] active than I was at 29, the last year I had two legs . . . I would like to be as young, as sexually active, and have as many legs as when I was 18. My wife would like that also."
In the general population, declining sexual activity accompanies advancing age, and several factors contribute to this pattern, including greater likelihood of not having a suitable partner and increased incidence of chronic illness (see, for example, discussions by Hayslip & Panek, 1993; Kellet, 1991; PowerSmith, 1991). Our sample of amputees did not appear to differ from the general population in this respect. Older participants in our study were more likely to have experienced amputation as a result of chronic illnesses such as peripheral vascular disease and diabetes. Vascular, endocrine, and neurological systems contribute to sexual arousal, and disturbances in these systems can have adverse consequences for sexual activity (LoPiccolo, 1991; Wise, Epstein, & Ross, 1992). As a 61-yearold man with bilateral below-knee amputations noted, the reduction in his sexual activity was not so much a result of amputation as the treatment for diabetes that had left him with secondary erectile dysfunction. This is a situation likely to be particularly problematic for individuals who feel that intercourse is the only acceptable form of sexual expression and among those who believe sexual fulfillment can be achieved only by penile erectile capacity (Kaplan, 1974).
We suspect, however, that the association between age and decreased sexual activity is more complex than previous research indicates. Of particular interest in the current study are results indicating that age was not related to satisfaction with frequency of sex since amputation, but older age was related to less satisfaction with the quality of sexual experiences since amputation. Additional research is needed both to replicate and clarify this finding. It may be, for example, that although people expect to become less sexually active as they age, loss of a limb makes it difficult, or perhaps impossible, to engage in the kinds of sexual behavior that are deemed, through life-long experience, as most enjoyable.
Aspects of Amputation and Impact on Sexual Activity
A somewhat counterintuitive finding was that many factors directly associated with amputation itself did not predict the extent to which amputation affected sexual activity. Specifically, total number of amputation procedures was not related to impact on sexual activity, and bivariate associations with type of amputation and medical reason for amputation could be explained by participant age. Not surprisingly, less time since amputation was related to more impact on sexual activity, a finding that might logically be attributed to experiencing more pain during sex as a result of early-stage healing. However, the correlation between these two variables was modest (albeit statistically significant). Amputation-related discomfort during sexual activities was not experienced by most participants, but it clearly created a problem for some individuals in our sample:
A 59-year-old married man whose above-elbow amputation almost 12 years earlier was a result of cancer reported that his stump was "very cold and somewhat painful" and therefore, limiting in intimate situations.
On a more positive note, a 69year-old below-knee amputee, slightly over one year post-amputation, reported experiencing pain in this context shortly after amputation because the stump was sore. However, he said that now he and his wife get along fine you just work around what you've got."
Still, there is little evidence that once initial healing has taken place, amputation itself should preclude sexual activity (e.g., Mooney, 1995). Indeed, our results suggest that other factors coincidental to time since amputation are involved in restricting sexual activities. Additional research is needed to identify the full range of variables that may influence the sexual adaptation process following loss of a limb. However, in the following sections, we discuss results relevant to two categories of variables that appear to be important in this context.
Amputation-Fostered Self-Consciousness in Intimate Situations
At the outset of this research, we suspected that individual differences in feeling uncomfortable in private or intimate situations would be related to the impact of amputation on sexual activity, and we found some support for this idea. Being bothered by having one's spouse or significant other see the stump or prosthesis was not related to impact on sexual activity, a null result most likely because of the fact that only three participants (less than 4%) reported being at all bothered. There was considerably more variability in responses to questions asking about feeling one's spouse or significant other was bothered by seeing the stump or prosthesis and whether amputation had increased feelings of general discomfort in intimate situations. Both variables appeared to contribute to impact of amputation on sexual activity. Several participants offered additional information relevant to these issues:
From a 33-year-old woman, married for three years, whose below-knee amputation resulted from a childhood trauma: "My spouse treats the amputation as a small part of me, the whole person . . . He doesn't think of the amputation unless there is context to consider it . . . Before a relationship can become intimate, we deal with the prospective partner's feelings about the disability and how that person views me. Those views must fall into a category with which I am comfortable or I will try to change the partner's opinion. If unsuccessful, the dating relationship ends before any intimacy. I probably experience more discomfort and uncertainty about how to address my disability when I have a relative stranger for a same-sex roommate like college roommate or retreat or camping trip."
From a 37-year-old divorced man with a cancer-related aboveelbow amputation: "If your spouse or s.o. [significant other] is bothered, upset, etc., to see your stump/prosthesis/naked human form, etc., then you should probably be looking for a new spouse etc.! You can't always do everything you desire, i.e., put your arms around someone for a hug, or support yourself in certain positions."
From a 69-year-old divorced man with an above-knee amputation: "Few people are completely at ease with the nitty gritty of any disability.
From a 36-year-old above-knee trauma amputee, described by our interviewer as muscular and attractive: ''I just don't feel like the man I was . . . She's been pretty good about it [referring to his live-in partner]. I don't know if I could be."
From a 34-year-old single (never married) man who had lost both legs below the knees as an aftereffect of being severely burned and who reported that he definitely felt uncomfortable in intimate situations: "You have to get into explaining it. People ridicule people with disabilities so you tend to not open up with people because you want to avoid hearing it."
Advice about Sexual Activity
Few participants in this study had received any advice from health care providers about whether they could or should engage in sexual activities. This is a finding consistent with an earlier study indicating that most amputees are inadequately trained in many aspects of daily living (Schulz et al., 1991).
Our data do not allow us to address fully the issue of why so few people receive advice about sexuality after amputation. On the other hand, our descriptive analyses suggested some interesting directions for future research and intervention.
For example, we suspect that this type of advice is seldom, if ever, volunteered. Rather, it is most probably received only when the patient asks direct and pertinent questions. Our data suggest that White, welleducated, married men (i.e., like those in our study who had received advice) are the amputees most likely to seek information about their future sex lives. They may also be the ones whose questions produce the most favorable responses from health care providers.
Medical patients desire, but rarely receive, reassurance from health care professionals that they may remain sexually active (Schover, 1989), despite the fact that interventions designed to educate medically compromised (Bullard & Knight, 1981; Rieve, 1989) and aging (Fazio, 1987; Goldman & Carroll, 1990) persons have been reported as successful. Such programs inform and counsel patients about how they can remain sexually active within the limitations of their disability (e.g., managing a prosthesis, wheelchair, or ostomy bag). To be successful, these interventions require that medical staff are both comfortable discussing sexuality and familiar with the amputation-related changes specific to each case.
Summary and Conclusions
At least one of every 300 people in the U.S. has experienced major limb amputation (cf. Rybarczyk et al., 1992), a ratio that is likely to increase as the proportion of elderly people in the population increases. Clearly, amputation poses serious threats to many aspects of an individual's wellbeing, and adjusting to the loss of a limb is a multifaceted endeavor. Intervention programs should most successfully facilitate adjustment when they attend to the filll range of social, psychological, financial, medical, and practical problems faced by amputees (Williamson et al., 1994).
Our data suggest that counseling about sexual activity should be included in that list of interventions. A fruitful area for intervention may involve reducing feelings of self-consciousness in private and intimate situations while simultaneously helping spouses and significant others adjust to their concerns and fears about changes in their partner. Further research is needed to determine the most beneficial type of advice. However, we suspect that extensive counseling is not necessary in most cases. The amputees in our study who had received any advice at all had received only very minimal amounts of it. With the caveat that so few participants had been advised about these matters that we were unable to conduct analyses for statistically significant differences, it nevertheless appeared that these individuals were faring much better than those who had not been advised at all.
Inferences that can be drawn from the results of this study are limited in other respects as well. Because the data were obtained from a convenience sample, the results may not generalize to the entire population of amputees. In addition, because it appears that our sample was exclusively heterosexual, these results may not represent the experiences of gay male, lesbian, or bisexual amputees. Finally, these are cross-sectional data. Although we found evidence supporting the proposed unidirectional model whereby amputation leads to restricted sexual activity, which, in turn, leads to increased symptoms of depression, we cannot rule out the viability of other models. For example, it is possible that undergoing limb amputation has a direct effect on depression, which then affects many aspects of functioning, including those related to sexual activity (see Williamson & Schulz, 1992a, 1993, 1995b, for discussions of reciprocal pathways). Longitudinal research and studies to investigate interventions designed to promote sexual activity following amputation are needed to resolve issues of causality. Despite its limitations, a strength of the current study lies in the further evidence it provides for the complex nature of adaptation among amputees. In addition to variables identified in previous research, the extent to which amputation is perceived negatively to affect sexual activity appears to be an important contributing factor and one that is, in many cases, amenable to intervention.