Sexuality and Amputation
An approximate number of 160,000 represent the amputations performed per year in the United States (Bodenheimer et al, 2000). A majority of these amputations involve lower extremity removal. Common factors or complications that lead to amputation include cancer, trauma, and congenital limb deficiency. The most common factor, though is, peripheral vascular disease complications. After these amputations, the amputees face major adjustments in their emotional, social, and physical aspects. Their sexuality is also expected to change depending on a couple of factors. Not much research has been done on changes in sexuality as a result of amputation. Most sexual cultural scripts prefer to exclude people with physical imperfections. It is sometimes viewed as devaluing or demoralizing the individual in question. The society also tends to have a general prejudice towards physically imperfect and disabled persons considering them to be unworthy of affection especially one that closely relates to sexual activity. In this paper, the effects of amputation on the sexuality of the amputee will be observed. Related aspects such as psychological impacts, perception and actual facts on amputees and the availability of counseling and rehabilitation options for theses individual will be evaluated.
Lower-extremity amputation (LEA) has some outcomes on the functional ability of a person. Concentrating on the geriatric population it has been observed that the goals and needs were necessary in measuring the functional outcomes of the patient. Personal care, recreation, vocational tasks, and household activities are examples of the most appropriate measures that can be used in geriatric amputees. Although, prosthesis is considered as the universal measure for functional outcomes, these other measures play an equally important role in geriatric amputees. The overall functional ability depends on the emotional, psychological, economic and physical factors therefore each of these components need to be considered when determining goals for and measuring of a LEA geriatric person (Geertzen et al, 2009).
Abnormality arising in the blood vessels and affecting any part or organ of the body other than the heart is referred to as a peripheral vascular disease. It can affect blood supply to and from major organs in the body and peripherally in case of extremities. The disease causes delayed healing of wounds and also gangrene. Arteriosclerosis (AS) is a PVD that mostly leads to major LEA. AS is characterized by thickening, narrowing, and loss of elasticity of the arterial vessels followed by decreased flow of blood to the tissues. 80% to 90% of amputations can be attributed to peripheral vascular disease and of more than half of all the non-traumatic cases of LEA in the United States arise from individuals with diabetes (Levin, 2004). There are other PVDs that may lead to LEA such as chronic venous sufficiency (CVI) and Buergers disease. The amputation that results from PVDs is recommended because of tissue necrosis. Advanced technology has introduced tools such as arterial reconstruction, peripheral arterial bypass grafting and balloon angioplasty to prevent lower-extremity amputation. Diabetes individuals, however, do not seem to be helped by these procedures. The elderly population is especially affected by a series of impairments that may lead to functional limitations for instance, hypertension, arthritis, visual impairment, and heart disease.
During the rehabilitation process of amputees, professionals get an opportunity to address the issue of sexuality since in normal circumstances sexual issues of people with physical disability are avoided. There are two viewpoint that can be used to analyze the sexuality of LEA individuals namely; sexual concern and sexual function. Since limb amputates have their sexual function preserved, their sexual life has not been broadly researched. Compared to studies on persons with central nervous system impairment, very few published studies can be found on sexuality of people with LEA.
Discussing the sexuality of people with a disability is significant especially in re-integration. Although the methodologies utilized in the rehabilitation process vary depending on social backgrounds, cultural backgrounds and generations, the purpose of rehabilitation remains the same all over. Rehabilitation aims to reduce the barrier between people with a disability and the social or physical circumstances that surround them (Levin, 2004). The sexual life of these people is one such circumstance that has to be addressed and barriers to it reduced considerably. An example of how circumstances affect the sexuality of persons with a disability is the financial strain, lack of physical capability for employment and lack of satisfaction with working life. These two elements, the psychological and physical aspects, ultimately influence the sexual performance of the individual. This sexual part of the person can also be influenced by their partners sexual performance. It is therefore important to apply the concept of sexual life of the individual during re-integration.
During rehabilitation there are several factors that have hindered discussions on sexuality. Many cultures view sexuality as a shameful and immoral topic. Also there is a general view in both persons with or without disability that this topic can only be discussed between the two sexual partners. The sexual function and sexual concern of a person with disability remains a delicate topic and one that most professionals are not yet willing to incorporate into their rehabilitation process. Every individual with a particular disability suffers from particular restrictions in his or her daily life to a certain extent. The functional limitation of the sexual activity of a disabled person has mostly been addressed in terms of penile erection or ejaculation and pregnancy and delivery in women. The issue of fertility and pregnancy in people with disability has been widely researched and technical advancements made to solve the problems underlying in these aspects of life. The functional aspect of sexuality is possibly easier to discuss than the concerns that arise regarding the sexuality of a person with a disability. Of the studies published on sexuality of people with a physical disability, victims of spinal cord injury comprise the most studies.
Studies on victims of lower limb amputation show that most males suffered some penile erection trouble. The sexual function may be affected by for instance the psychological trauma. Although most of the other physical disabilities have been researched regarding the sexuality of the victims, lower limb amputation has had little studies published regarding it. One reason to this is that the sexual function of these individual is rarely impaired. Also the fact that prosthesis compensates for the loss of physical function in limb amputees, medical care is terminated after fitting of another limb hence no more consultations with the medical professionals. Additionally, the limb amputees enjoy a more independent life compared to other individuals with physical disabilities. Their physical performance is better and the only advice they require often is technical advice only from rehabilitation professionals. A 2000 study by Bedonheimer found that interest in the sexual life in limb amputees remained high despite the various other problems caused by the loss of a physical part (Bodenheimer et al, 2000). Also evidence of increased anxiety and depression was absent. A 1998 study on limb amputees with a majority of elderly individuals found that 43.5% of the participants had talked of their sexual life with someone (Walter and Williamson, 1998). None of the participants indicated that they had talked to a medical professional but rather they talked to their spouse or a friend.
The study also found that the number of people with limb amputation who engaged in sexual activities was higher than those of other physical disabilities. 51 of the 85 respondents engaged in intercourse, 18 kissed and 17 caressed. The quality of sexual life is therefore the concern. 42.4 percent answered that their sexual life had changed after the amputation. Twenty-six of those who gave this answer noted that their libido had reduced. These findings are consistent with those of other studies.
On a six point scale, the sexual satisfaction of the respondents was investigated. Taking 1 to mean very dissatisfied and 6 to mean very satisfied, those with a partner tended to incline towards 6 while those without a spouse leaned on the side with 1. The site of amputation (either lower or lower limb) and the cause of amputation (either non-traumatic or traumatic) did not seem to impact on the sexual satisfaction of the respondents. The body image of limb amputees is very core in determining their reaction to sexual and other aspects of their life. How they view themselves and how others view them in this new body plays a very big role in determining their confidence to engage in sexual activity or even perform sexually. One reason that illustrates the need for studies on the body image of limb amputees is the reduced libido experienced after amputation as reported a number of respondents. Also the loss of a body part makes the limb amputees a unique body image when compared to the body image of patients who have other types of physical handicaps. Since a sexual life largely depends on having a partner, a narrow outlook may strongly impact on the sexuality of a person with limb amputation (Atherton and Robertson, 2006). The limb amputee might also feel embarrassed to show their amputated limb to their partner or spouse.
The medical professionals should recognize the needs of the amputee with regards to their sexuality. In the past, amputation surgery and the rehabilitation process were the key interests that medical professionals focused on. The quality of life of limb amputees has only recently been embraced and more research has to be done to determine how issues relating to their quality of life should be addressed such as their sexuality. Some limb amputees cling to the hope that a newly developed prosthesis could help improve their sexual life. It is not to be concluded yet as to the particular steps that could be followed in solving sexuality issues in them but the rehabilitation process presents a perfect avenue to introduce strategies and counseling sessions addressing the sexuality of limb amputees.
A 1999 study by Bodenheimer includes several other aspects of the sexuality of limb amputees. Sexual fantasy is one of the additional aspects. It was found that eighty five percent of the participants fantasized at least once per month. On sexual arousal, only thirty three percent of the subjects reported to have normal arousal whereas the others had varying problems in the issue of arousal. 67% of the participants stated that they experienced moderate to high interest in sex and 63% were moderately to highly satisfied with their relationship with their sexual partner. It is important to note that 90% percent of the questioned individuals expressed the desire to engage in sexual intercourse more than one time in a month. The common reasons given for having problems with sexual activity were lack of interest from the subject, lack of a partner and performance anxiety. However, the most common reason was side effects of medication. The subjects in the study also took part in a sexual position evaluation whereby the sexual position that they used was indicated. The subject supine was discovered to be the most used position followed by the missionary position and finally the sidclying position. There was no significant effect of pain on the various aspects of sexual functions. Depression and anxiety were not noted to affect the sexual functioning of the subjects. Age is also another factor that was found to affect sexual functioning. Those above 65 years of age were found to experience more sexual problems compared to their younger colleagues (Bodeinheimer et al, 2000). The first few months after amputation were characterized by reduced or no engagement in all the other sexual domains except sexual fantasy. Some rehabilitation institutions such as Riverside rehabilitation institution have embarked on a project to offer sexual counseling and rehabilitation programs aimed at addressing the sexual concerns of amputees. Also there are several online sites that have embraced the need to provide awareness and information on ways to deal with the sexual problems arising from amputation one such site is the sexsupport.org website.
Generally when looking at the sexuality of lower limb amputees as studied in the above two and other studies, it is apparent that the quality of life is the key issue when the sexuality of limb amputees is raised. Other than the sexual functioning and sexual concerns of the patients, the psychological element is a matter that affects the amputees very much. Since they have not lost their sexual function, any problems arising from the amputation therefore is mostly related to their psychological state (Geertzen, 2008). The psychological adjustment to lower limb amputation can be addressed by looking at the depressive and anxious reactions, social discomfort, sense of self and identity, social functioning and body-image anxiety.
Some patients have been known to use their prosthesis less and to have lower levels of mobility due to depression shortly after amputation. Poor self related health, more feelings of vulnerability and increased levels of activity restriction have also been observed from depression in long-term amputations (Houston, n.d.). Mixed findings have been yielded in a number of researches with some associating an increase in depression with the amputation and other finding no evidence of increased levels of depression after amputation. Age has also been pointed as a determiner as to the adjustment rates and levels after amputation. There is also the factor of time period after the amputation. The most studies carried out have been on depression 2 to 10 years after amputation. A depression reaction is very common in the initial phase after amputation. Comparatively higher levels of depression have been found in people who have lost limbs averaging 2 years. However, there is a decrease in the depression rates in the 2 to year post amputation range. The 10 to 30 years post amputation range has mixed findings. Some findings indicate elevated rates of depression whereas others show normal levels of depression. Depression reaction should therefore not be generalized as evidenced rather it should be understood that different ages, different measurement instruments and different etiologies give varying results hence specification is necessary.
Another measure of psychosocial adjustment to amputation is anxiety. Findings on anxiety are considered more straightforward compared to the mixed ones found in evaluating levels of depression (Lindau et al, 2007). Using the Rorschach tests, a majority of the soldiers subjected to the study indicated increased levels of anxiety in the period shortly after amputation. Other studies during year after amputation also gave the same findings of increased anxiety. However, the levels of anxiety of amputees were similar to those of the general population when they were tested on an average of 2 to 20 years after amputation. Anxiety is therefore seen to appear in immediate post amputation and up to one year after amputation.
Lower limb amputees also have to cope with the changed body image. In defining body image the core elements are the psychological experiences, attitudes and feelings relating to the form, function, desirability, and appearance of the body of an individual influenced by environmental and individual factors (Ziegler-Graham et al, 2008). Low levels of self esteem, poor perceived quality of life, depression and elevated levels of general anxiety have been found to increase body image anxiety in amputees.
Another measure of psychological adjustment is social discomfort and social functioning. More to the physical limitations, lower limb amputees have to adjust to the idea that they look different from other people. They shift from the group of normal and physically able to a group of disability and possible stigmatization. This disability leads them to be treated differently by the non-disabled. For instance, the non-disabled people often consider the disability of the disabled individual as the core aspect of their personality and functioning and forget that in most cases the disability is just one facet of the disabled individuals life. The amputee is bound to have negative experiences that will lead him or her to conclude that the amputation was a negative occurrence in their life. An example is being avoided by those without disabilities as they fear saying something that will offend the disabled person or because they experience unease and general anxiety in the presence of the disabled person. Social problems such as difficulty in participating in social activities were found in older individuals and amongst younger amputees, a particular study found that almost half of the subjects in the study visited relatives and friends less frequently (Reinstein et al, 1978). Two thirds of the participants in the study were also found to go to the cinema, library, theater, dances, shows and sports events rarely. There is a direct association between social discomfort and activity restriction. Public self conscious individuals were found to be often restricted to engage in household chores, shopping activities and visiting friends in a certain study. Depression can be a mediator to this relationship between social discomforts and reduced social functioning.
Although not wholly, following an amputation the self identity and sense of self of an amputee is bound to change. The amputee is forced to adjust to the new person that he or she has become. In the early phases after the amputation, the amputee feels vulnerable, empty and mutilated (Stein, 2007). Time helps to open the eyes of the amputee to the possibility of adjusting to the new limitations and restrictions. The amputee is faced with the requirement to establish a new self based on the new limitations and restrictions on him or her.
There are several factors that are associated with psychological adjustment in lower limb amputation persons. The cause of amputation is one such factor which categorizes amputees into trauma amputees and non-trauma amputees. Denial is the most common emotion displayed by trauma victims after amputation while anger and hostility are emotions shown by non-trauma amputees after amputation. However, there are some studies that have found no relation between cause of amputation and psychological outcomes of the amputation.
Level of amputation is another factor in determining the rate and success of rehabilitation. An example to illustrate this is a study that found that as the level of amputation increased, use of prosthesis decreased (Williamson, n.d.). A possible explanation would be that an above the knee prosthesis would require more energy to operate compared to a below the knee prosthesis. Above the knee amputations have been found to result to poorer rehabilitation outcomes and increased levels of activity restrictions.
The time since amputation matters a lot when looking at the psychological outcomes. There are some findings that consider there to be no relationship between time since amputation and depressive symptoms. In those that a relationship has been found, a more favorable outcome was observed with the increase in time since amputation (Ide, 2002). Phantom limb pain, stump pain, prosthesis, age, marital status, and social support are other factors that are considered to be associated with psychological adjustment.
Although initially the levels of depression and anxiety are higher, they decline thereafter and conform to the levels of the general population. Social discomfort and body image anxiety, though, have been found in some amputees possibly due to poorer adjustment in terms of more activity restriction, anxiety and depression (Ide, 2004). Factors that have been associated with better coping with psychological adjustment to amputation include, higher levels of social, partner and family support, higher levels of satisfaction with prosthesis, more time since amputation and an optimistic personality.
Psychodynamic explanations in the past perceived phantom limb pain to be the evidence of psychopathology in lower limb amputees. It was considered that phantom limb pain constituted denial through activity in people who have had lower limb amputation. There are studies that have associated phantom limb pain to body image anxiety citing that more body anxiety was present in people with phantom limb pain. In addition there has been established a relationship between phantom limb pain and stress (Hogan and MacLachlan, 2004). However, there is nature of relationship between phantom limb pain and psychological distress has not been precisely found.
Stump pain could be associated with the well-being of the individual psychologically. It could also be related directly with depression. The studies carried out on the relationship between stump pain and psychological outcome have found that stump pain leads to less satisfactory outcome during rehabilitation. The negative impact of stump on rehabilitation and mobility could cause depression and anxiety since the activity restrictions have increased.
Prosthesis is also a factor associated with psychological adjustment. Prosthesis can play a major role in helping individual regain mobility and independent functioning and therefore reducing physical limitations. As a result of the inter-relation of depression with activity restriction, prosthesis can therefore impact on the emotional well-being of an amputee (Bodenheimer, 1996). Prosthesis could also reduce body image anxiety as prosthesis reduces the extent of alteration in body image. In additional to fulfilling certain functional needs, prosthesis plays a role in concealing the amputation and restoring a normal or former body image in the individual.
The sociademographic factors (age, gender and marital status) also relate with the psychological adjustment significantly. Psychological well-being following amputation has been found to not be affected by gender. In the studies that gender has been found to have an effect on the psychological outcome, the outcomes have been found to be more positive on men than on women. Depression, low scores on emotional adaptation to role changes and poor performance on emotional adaptability have been found to be more prevalent in the studies (Houston, n.d.).
Some studies find no relationship between age and psychological well-being of amputees. In those that have found effects of age on psychological well-being, older people tend to be favored than young people. Adolescents in the studies were found to feel self-conscious about their body and to get upset and bothered due to the stares they get from people and the questions they get asked concerning their amputation. Education level and income level are other variables that could be associated with the psychological adjustment in lower limb amputation (Lindau et al, 2007).
Looking at social support requires three theoretical constructs to be created. Support appraisal, support network resources, and supportive behavior are the three constructs. Supportive behavior in most studies is viewed to improve adaptability and give positive rehabilitation outcomes. Support network resources and support appraisal were also found to impact on the psychological outcomes of the subjects in a similar way as supportive behavior but not as much.
In conclusion, Lower limb amputation is not a new complication in the United States. Approximately 160, 000 people undergo an amputation every year. Most of these amputations are lower-extremity amputation. Following the amputation, many things tend to change in the daily life of the amputee. Sexuality is one among the many life aspects of the amputee that are bind to change. However, the issue of sexuality has not been addressed by medical professionals much as in most cultures sexuality is a shameful, immoral, and personal topic. Most amputees in various studies have been found to prefer to talk to their friends, or partners about their sexuality and not even one individual reported to have talked to a medical professional regarding their sexuality. The most common sexuality aspect that has been addressed in lower limb amputees is fertility and pregnancy. However, given the sexual problems that arise from amputation it is recommendable that more studies be carried out on sexuality in lower limb amputees and recommended actions be applied in the rehabilitation process. Compared to other disabilities, lower limb amputation preserves the sexual function of the individual. This therefore means that the sexual problems arising from the amputation are psychological and not health related. It is hence important to look at the psychological adjustment of lower limb amputation in order to have a clear picture of the changes expected of the amputee. The common measures of psychological adjustment include the anxiety reactions, depression reaction, social functioning, social discomfort, body-image anxiety, sense of self and self identity. There are also factors associated with psychological adjustment including.
References:
Atherton, R. and Robertson, N., (2006). Psychological adjustment to lower limb amputation amongst prosthesis users. Disability and Rehabilitation, 28(19), pg. 1201-1209
Bodenheimer, C. F., Kerrigan, A. J., Garber, S. L., Monga, T. N (2000). Sexuality in persons with lower extremity amputations. Disability and Rehabilitation, 22(9), pg. 409-415
Bodenheimer, C. F., Kerrigan, A. J., Monga, T. N., (1996) Sexuality in lower limb amputees: a descriptive study. Arch Phys Med Rehabil 77, 931
Geertzen, J. (2008). Moving beyond disability. Prosthet Orthot Int 32(3), pg. 276-281
Geertzen, J. H. B., Van Es, C. G., Dijkstra, P. (2009). Sexuality and amputation: a systematic literature review. Disability and Rehabilitation, 31(7), pg. 522-527 Abstract: http://www.ncbi.nlm.nih.gov/pubmed/19117187
Hogan, O., MacLachlan, M., (2004). Psychological adjustment to lower-limb amputation: a review. Disability and Rehabilitation, 26(14/15), pg. 837-850
Houston, S. (n. d.) Altered states. Our body image, relationships and sexuality. ACA. www.amputee-coalition.org/first_step_2005/altered_states.html
Ide, M. (2004). Sexuality in persons with limb amputation: a meaningful discussion of re integration. Dicability and Rehabilitation 26(14/15), pg. 939-943
Ide, M., Watanabe, T., & Toyonaga, T. (2002) Sexuality in persons with limb amputation. Prosthet Orthot Int, 26(3), pg. 189-94
Levin, A. Z. (2004). Functional outcome following amputation. Topics in Geriatric Rehabilitation 20(4), pg. 253-261
Lindau, S., T., Schumm, L., Laumann, E., O., Levinson, W., et al. (2007) A study of sexuality and health among older adults in the United States. N Engl j Med 357(8)
Perceived impact of limb amputation on sexual activity: a study of adult amputees http://www.forum-amelo.homepage.t-online.de/hintergrund/theorie2/williamson1.html
Reinstein, L., Ashley, J. & Miller, K., H. (1978). Sexual adjustment after lower extremity amputation. Arch Phys Med Rehabilitatin, 59 (11), pg. 501-4
Stein, R. (2007) Elderly staying sexually active. The Washington post. www.washingtonpost.com/wp-dyn/content/article/2007/08/22/ar2007082202000_pf.html
Walters, A. S. and Williamson, G. M. (1998). Sexual satisfaction predicts quality of life: a study of adult amputees. Sexuality and disability, 16(2)
Ziegler-Graham, K., MacKenzie, J. and Ephraim, P. et al (2008). Estimating the prevailance of limb loss in the United States 2005 to 2050. Arch Phys Med Rehabil, 89
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