Sexuality in persons with limb amputation: A meaningful discussion of re-integration

Purpose: Rehabilitation professionals do not appear to be sufficiently prepared to deal with the sexual issues of people with a physical disability, although they have recognized the value of discussing them during the rehabilitation process. This commentary argues that the sexuality of people with a disability should be evaluated from the two viewpoints of sexual function and sexual concern. With regard to people with a limb amputation, their sexual life has not attracted researchers' or clinicians' interest because their sexual function is usually preserved, is the same as that of able-bodied persons, and there is a perception that assistance is not required. Indeed, the number of published studies on the sexuality of this population is apparently fewer than the number of studies on the sexuality of persons with central nervous system impairment.

Conclusion: Investigation of the body image of people with a limb amputation and recognition of their needs are considered to be necessary for further discussion of this theme. Discussion of sexuality with some realistic statistical figures should also have great value in assisting with the re-integration of people with a limb amputation.     

Sexuality in persons with limb amputation: A meaningful discussion of re-integration

Purpose:?Rehabilitation professionals do not appear to be sufficiently prepared to deal with the sexual issues of people with a physical disability, although they have recognized the value of discussing them during the rehabilitation process. This commentary argues that the sexuality of people with a disability should be evaluated from the two viewpoints of sexual function and sexual concern. With regard to people with a limb amputation, their sexual life has not attracted researchers' or clinicians' interest because their sexual function is usually preserved, is the same as that of able-bodied persons, and there is a perception that assistance is not required. Indeed, the number of published studies on the sexuality of this population is apparently fewer than the number of studies on the sexuality of persons with central nervous system impairment.

Conclusion:?Investigation of the body image of people with a limb amputation and recognition of their needs are considered to be necessary for further discussion of this theme. Discussion of sexuality with some realistic statistical figures should also have great value in assisting with the re-integration of people with a limb amputation.     

Sexual functioning and sexual well-being in people with a limb amputation: a cross-sectional study in the Netherlands

Purpose: This study aimed to: (a) investigate whether, and if so which, sexual problems are present in people with a limb amputation; (b) analyze how they experience their sexuality; and (c) investigate whether sexuality was discussed with them during their rehabilitation process. Method: In total, 301 participants completed a survey consisting of a questionnaire on participant characteristics, the Hospital Anxiety and Depression Scale (HADS), the Maudsley Marital Questionnaire (MMQ), the Amputee Body Image Scale (ABIS), the Questionnaire about Sexual Counselling, the Questionnaire about Sexuality and the Short Sexual Functioning Scale (SSFS). Results: Overall, 20% of the participants experienced one or more sexual dysfunction(s). Participants who had at least one sexual dysfunction were more likely to be male, had an amputation more recently, and had a more negative body image. Moreover, sexuality was only scantly discussed by rehabilitation professionals. Conclusions: Sexual problems and sexual dysfunctions do occur in people with a limb amputation, but these problems are not discussed during the rehabilitation process. Justice for a person's “whole body” can only be served when sexuality is taken seriously in rehabilitation care in order to avoid cutting sexuality out of an amputee's life.

• Implications for Rehabilitation

• People with a limb amputation may be confronted with sexual problems and/or sexual dysfunctions.

• It is therefore important that sexuality is taken seriously as a part of standard rehabilitation care and that professionals bring up the issue of sexuality during the rehabilitation process.

     

Sexuality in people with a lower limb amputation: a topic too hot to handle?

Abstract

Purpose: The purpose of this study was to analyze whether, and by whom sexuality is discussed in amputation departments. The focus was on whether professionals received questions about sexuality from their patients with a lower limb amputation and whether they addressed sexuality themselves, as well as on the knowledge and comfort level, approach and attitudes toward sexuality of these professionals. Method: An online questionnaire, including questions on self-perceived sexological competence and the Knowledge, Comfort, Approach and Attitudes towards Sexuality Scale. Results: Seventy-eight percent of the professionals had not received questions about sexuality from their patients and 67% had not addressed sexuality. Self-perceived knowledge about sexuality and self-perceived ability to recognize sexual problems increased the odds of receiving a question about sexuality and the odds of addressing this issue. Conclusions: Sexuality is rarely discussed by professionals in the amputation department. It is, however, the responsibility of the professional to do so. By addressing sexuality in a systematic way and discussing this as a common topic professionals “give permission” to patients and other team members to discuss eventual sexual problems or concerns. Therefore, the professionals’ self-perceived sexological competence and feeling of comfort with the topic of sexuality need to be increased.

• Implications for Rehabilitation

• Sexuality is rarely discussed by professionals in the amputation department, even though sexual problems do occur in patients with a lower limb amputation (LLA).

• By addressing sexuality in a systematic way and discussing this as a common topic professionals “give permission” to patients and other team members to discuss eventual sexual problems or concerns.

• Our study shows that self-perceived knowledge about sexuality and self-perceived ability to recognize sexual problems increases the odds of receiving a question about sexuality and the odds of addressing this issue.

• Investing in courses that focus on increasing the knowledge and feeling of comfort concerning sexuality of professionals working with people with a LLA is therefore of important value.

     

Chronic phantom sensations, phantom pain, residual limb pain, and other regional pain after lower limb amputation

OBJECTIVES: To determine the characteristics of phantom limb sensation, phantom limb pain, and residual limb pain, and to evaluate pain-related disability associated with phantom limb pain. DESIGN: Retrospective, cross-sectional survey. Six or more months after lower limb amputation, participants (n = 255) completed an amputation pain questionnaire that included several standardized pain measures. SETTING: Community-based survey from clinical databases. PARTICIPANTS: A community-based sample of persons with lower limb amputations. MAIN OUTCOME MEASURES: Frequency, duration, intensity, and quality of phantom limb and residual limb pain, and pain-related disability as measured by the Chronic Pain Grade. RESULTS: Of the respondents, 79% reported phantom limb sensations, 72% reported phantom limb pain, and 74% reported residual limb pain. Many described their phantom limb and residual limb pain as episodic and not particularly bothersome. Most participants with phantom limb pain were classified into the two low pain-related disability categories: grade I, low disability/low pain intensity (47%) or grade II, low disability/high pain intensity (28%). Many participants reported having pain in other anatomic locations, including the back (52%). CONCLUSIONS: Phantom limb and residual limb pain are common after a lower limb amputation. For most, the pain is episodic and not particularly disabling. However, for a notable subset, the pain may be quite disabling. Pain after amputation should be viewed from a broad perspective that considers other anatomic sites as well as the impact of pain on functioning.     

Attitudes towards Sexuality,Sterilization and Parenting Rights of Persons with Intellectual Disabilities

Background and Methods We review articles pertaining to attitudes towards sexuality, sterilization, procreation and parenting by people with intellectual disabilities. Most empirical studies were conducted after the appearance of the principles of normalization and role valorization in the 1970s. Results Across studies, special education teachers and university students appear to hold more positive attitudes towards sexuality and sexuality education programs than parents and service workers. People with intellectual disabilities have conservative attitudes towards sexual intercourse and homosexuality, but may be accepting intimate contact by familiar persons. Despite the ban on involuntary sterilization, it appears that many parents and teachers of persons with intellectual disabilities still support it as a form of contraception, especially for persons with severe intellectual disabilities. Likewise, attitudes towards parenting by persons with intellectual disabilities remain negative, and these attitudes may adversely affect the provision of competency‐enhancing supports and services for parents with intellectual disabilities and their children. Conclusions It is recommended that new studies should be undertaken, comparing attitudes across different groups involved with persons with intellectual disabilities and examining the impact of prejudicial attitudes on sexual expression and parenting by persons with intellectual disabilities.     

Performance of persons with juvenile-onset amputation in driving motor vehicles

OBJECTIVE: To study the driving of motor vehicles by persons with juvenile-onset amputation and to compare the percentage of drivers among them with that found in the general population. DESIGN: A follow-up study of subjects who were younger than 18 years of age at amputation and who underwent one-sided amputation, covering the period 1976 to 1996. SETTING: The Prosthesis Service of the Asturias Central Hospital, Spain. SUBJECTS: A total of 236 juvenile amputee patients. RESULTS: The percentage of women with amputations who drive is lower than that of their male counterparts (p<.05). The percentage of drivers with upper limb amputations is greater than that of drivers with amputation of the lower limb (p<.05). Motor vehicle adaptations were used more frequently by people with upper limb amputations (p<.05). The ability to drive was not affected by the etiology or the side of amputation, or by the use of a prosthesis. The level of amputation affected driving ability in cases of amputation of the lower limb, but not in those of amputation of the upper limb. CONCLUSION: The percentage of persons with juvenile-onset amputation who drive (47.4%) is similar to that found in the general population (40.8%), and the use of a prosthesis does not have any influence on the capacity to drive a car--89.2% of drivers and 93.5% of nondrivers used a prosthesis.     

Disability, facilitated sex and the role of the nurse

AIM: The aim of this paper is to explore the role that nurses can play in acknowledging and facilitating the sexual needs of disabled patients within an holistic framework of nursing care. BACKGROUND: Contemporary nursing claims to offer patient care within an holistic framework; this framework should encompass the biopsychosocial needs of patients, as defined by patients themselves. In spite of the importance of sexuality and sexual expression to the psychosocial welfare of patients, sexuality is often excluded from nursing practice. METHOD: Literature is reviewed from nursing, disability studies, and a variety of social science disciplines. FINDINGS: The paper begins with a discussion of the concept of 'holistic care' and the ways in which this has been interpreted in the nursing literature. The biopsychosocial approach and the notion of 'whole person' holism seem particularly significant, although the lack of attention to patient sexuality is identified. Literature from the social sciences is used to explore the significance of sexuality to individual self-identity and psychosocial welfare. This literature also highlights the way in which the denial of sexual identity is a significant feature of power relations. The disability studies literature catalogues the way in which disabled people are generally infantilized by society and perceived as asexual. This literature also highlights the professional neglect of disabled sexual identities. Using a variety of literature, the concept of facilitated sex is explored as a continuum of activities and the role of nursing, within a holistic framework, is examined. CONCLUSION: The paper concludes by arguing that an holistic approach to nursing care should include an appreciation of patient sexuality. In particular, it suggests that nurses can play an important role along the continuum of facilitated sex.     

The cancer amputee and sexuality

To the person experiencing amputation, the loss of a limb has a serious psychosexual impact. Whatever the age, the surgical procedure itself, pain, deformity, inability to perform simple customary acts, economic threat, and many other problems impose on the person facing the loss of their limb. Commonly, concentration is focused on functional abilities during and after prosthetic rehabilitation, and care taken to preserve the person's sexuality is often omitted. Major limb amputation can cause a decrease in self-esteem and body image due to perceived mutation, and this in turn can create emotional hurdles for both the patient and partner. Several potential problems such as the mechanics of body positioning during sex play, balance and movement, and phantom pain sensations can alter sexual function. Added difficulties include chemotherapy-induced neuropathies and enforced isolation because of limited mobility. Although these various disabling maladies may require alterations in a sexual relationship, sex drive and desire usually remain intact. Specific assessment techniques and interventions must be made available to enable the nurse to discuss sexual concerns at all stages of cancer and its treatment. As well, we must not fail to see alternatives to stereotypical behavior and acknowledge each patient's unique sexual identify.     

Is the sexuality of people with a learning disability being denied?

This article explores how the nursing profession has become more liberal in its attitudes towards sexuality as a consequence of and a response to HIV/AIDS. This liberal attitude has, however, failed to be generalized towards people with a learning disability. The continued use of labelling terms for people with a learning disability serves as an excuse to either justify the control of people's sexuality and fertility, or a rationale to argue that people with a learning disability do not have a sexual identity. Developments in the self-advocacy and advocacy movement provide opportunities for people with a learning disability to have a say in the development of sexuality policies to guide the practice and philosophy within an organization.     

Sexuality and amputation: a systematic literature review

Purpose. To systematically examine the state of research on sexuality and amputees.

Methods. A total of five publication databases were searched: Pubmed, Cinahl, Embase, Psychinfo and Recall.

Results. A total of 11 eligible studies was found. The studies were characterised by a diversity of study populations, sampling methods, gender and age distributions, assessment methods, and outcomes measures. The use of the terminology regarding sexuality was ambiguous. All studies found an impact of the amputation of a limb on some part of sexual functioning (or concerns about) to some degree.

Conclusions. Studies on sexuality and amputees are very diverse and terminology is ambiguous. Amputation of a limb has an impact on sexual functioning. Amputees complain that there is little support from professionals. The authors recommend the use of the ICF terminology. Suggestions for future research are given.     

Addressing Sexuality Among People Living With Chronic Disease and Disability: A Systematic Mixed Methods Review of Knowledge,Attitudes, and Practices of Health Care Professionals

ObjectiveTo systematically review health care professionals’ practices and attitudes toward addressing sexuality with people who are living with chronic disease and disability.Data SourcesScopus, PubMed, PsycINFO, Cumulative Index to Nursing and Allied Health, Allied and Complementary Medicine Database, and MEDLINE were searched to August 2020 for English language publications. Reference lists of relevant publications were also searched.Study SelectionEligible studies reported on knowledge, attitudes, and behaviors of health care professionals about addressing sexuality in the context of chronic disease and disability. The search yielded 2492 records; 187 full texts were assessed for eligibility and 114 documents were included (103 unique studies). Study quality was rated using the Mixed Methods Appraisal Tool.Data ExtractionCharacteristics of included studies were recorded independently by 2 authors. Differences were resolved through discussion or by a third author.Data SynthesisA sequential, exploratory mixed studies approach was used for synthesis. Pooled analysis showed that 14.2% (95% CI, 10.6-18.9 [I²=94.8%, P<.001]) of health professionals report routinely asking questions or providing information about sexuality. Professionals reported limited confidence, competence, and/or comfort when initiating conversations about sexuality or responding to patient questions. Sexual rehabilitation typically focused on the effect of disease, disability, and medication on sexual function. Broader dimensions of sexuality were rarely addressed.ConclusionDespite recognizing the value of sexuality to health and well-being, most health professionals regardless of clinical context fail to routinely include assessment of sexuality in their practice. Professionals have limited knowledge and confidence when addressing sexuality and experience significant discomfort when raising this topic with people living with chronic disease and disability. Multicomponent implementation programs are needed to improve health professionals’ knowledge, competence, and comfort when addressing sexuality for people living with chronic disease and disability.     

Attitudes and perceptions towards disability and sexuality

Purpose.?To describe current societal perceptions and attitudes towards sexuality and disability and how social stigma differs between individuals living with visible and invisible disabilities.

Method.?A qualitative approach was used to explore attitudes and perceptions towards sexuality and disability. Focus groups were conducted with the following groups: service providers, people with visible disabilities, people with invisible disabilities and the general public. The focus group participants viewed ‘Sexability’ a documentary film on sexuality and disability to stimulate discussion midway through the session.

Results.?Findings suggest that individuals with disabilities are commonly viewed as asexual due to a predominant heteronormative idea of sex and what is considered natural. A lack of information and education on sexuality and disability was felt to be a major contributing factors towards the stigma attached to disability and sexuality.

Conclusions.?Stigma can lead individuals to internalise concepts of asexuality and may negatively impact confidence, desire and ability to find a partner while distorting one's overall sexual self-concept. Societal attitudes and perceptions are driven by education and knowledge, if there is no exposure to sexuality and disability, it follows suit that society would have a narrow understanding of these issues. Further research should focus on how best to educate and inform all members of society.     

Adolescent sexuality and disability

Regardless of what our beliefs about sex and disability may be, as health care providers we can promote the health and well being of our patients with disabilities in several ways. First and perhaps foremost, physical and programmatic barriers to accessing general health care including routine gynecologic care must be dramatically reduced. The promise of Title III of the Americans with Disabilities Act must be aggressively extended to our health care system to ensure equal access to routine health care for all. Second, knowledge of community resources that can support the healthy development and exercise of responsible and satisfying sexuality is critical. For example, health care providers should know about adaptive and assistive technologies as well as the use of personal care assistants to support the healthy although sometimes nontypical expression of one's sexuality. Centers for Independent Living are community resources that are often underutilized by the medical profession. These centers--run by and for people with disabilities--are likely resources and allies for providing education, role models, and peer mentoring around relationships, intimacy, sexuality, sexual expression, and parenting with a disability. Finally, sex education is a must and should include the following: Basic facts of life, reproduction, and sexual intercourse; Human growth and development Human reproduction and anatomy Self-pleasuring/masturbation and the use of sexual aids Intimacy and privacy Pregnancy and child birth Contraception and abortion Family life and parenthood Sexual response and consensual sex Sexual orientation Sexual abuse HIV/AIDS and other sexually transmitted diseases. The question should not be whether sex education is provided to persons with disabilities, but rather how it is most effectively provided. Health sex education must include the development of effective communication skills, decision-making skills, assertiveness, and the ability to say "no." It must also include ways to create satisfying relationships. For more information about sex education as it relates to people with disabilities, the following abbreviated resource list may be helpful: http://www.sexualhealth.com http://www.lookingglass.com Ludwig S, Hingsburger, D. Being sexual: an illustrated series on sexuality and relationships. SIECCAN, 850 Coxwell, Aven., East York, Ontario, M4C 5R1 Tel: 416-466-5304; Fax: 416-778-0785. Sexuality Information and Education Council of the United States (SIECUS), 130 West 42nd Street, Suite 350, New York, NY 10036. Tel: 212-819-9770. National Information Center for Children and Youth with Disabilities (NICHCY), P.O. Box 1492, Washington, DC 20013; Tel/TTY: 800-695-0285; Fax: 202-884-8641; Internet: www.nichcy.org Non-Latex Supplies (Ask your pharmacist if not available) Trojan-Supra: http://www.trojancondoms.com Durex-Avanti: http://www.durex.com Female Health Company-FC Female Condom http://www.femalehealth.com Pasante--EzOn http://www.postalcondoms.co.uk (available in Canada and U.K.).     

Social and sexual relationships of adolescents and young adults with cerebral palsy: a review

OBJECTIVE: To investigate possible barriers to successful social and sexual relationships in adolescents and young adults of normal intelligence with cerebral palsy. DESIGN: A literature review based on a PubMed and PsycINFO search for the period 1990-2003. Included were studies focusing on one or more of the outcome parameters (i.e. social, intimate and sexual relationships) or on associated factors that described relationships with the outcome parameters. RESULTS: Fourteen papers were selected. Two studies investigated exclusively people with cerebral palsy whereas 12 concerned people with a congenital disability and/or physical disabilities, including people with cerebral palsy. All studies addressed adolescents or adults of normal intelligence. A. Social and sexual relationships: In social relationships adolescents and young adults with cerebral palsy were less active than their age mates, and dating was often delayed and less frequent. Adolescents with congenital disabilities indicated that sexuality is an important aspect of their lives, but they experienced difficulties developing a sexual relationship. B. Associated factors: Psychological maladjustment, insufficient self-efficacy and low sexual self-esteem may impair the development of social and sexual relationships. Overprotection in raising children with cerebral palsy and the negative attitudes of other people may have a negative influence on the self-efficacy of people with cerebral palsy. CONCLUSION: The reviewed studies suggest many factors that may influence the development of social and sexual relationships in adolescents and young adults with cerebral palsy. However, evidence was found only for the personal factors self-efficacy and sexual self-esteem and their interrelationships with the parents' way of raising their children and successful experiences in social situations.     

Use and satisfaction with prosthetic limb devices and related services

OBJECTIVES: To examine the use and satisfaction with prosthetic limb devices and satisfaction with prosthetist services in a large and diverse sample of persons with limb loss. DESIGN: Retrospective cohort study. SETTING: General community. PARTICIPANTS: Persons aged 18 to 84 years identified from the Amputee Coalition of America registry as having a major upper- or lower-limb loss due to vascular disease, trauma, or malignancy. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Use and satisfaction with prosthetic limb devices and satisfaction with prosthetists' services, assessed via structured telephone interviews. RESULTS: Most persons (94.5%) surveyed had a prosthesis and used it extensively (71h/wk). Most persons with amputations appeared to be satisfied with the overall performance of their prostheses (75.7%). Nearly one third of them, however, expressed dissatisfaction with their prostheses' comfort. Frequency of prosthesis use and satisfaction with the device were significantly higher among those with shorter timing to first prosthesis fitting, even after controlling for a wide array of respondents' sociodemographic and amputation characteristics. Overall, persons with amputations in our sample had positive assessments of their prosthetists' quality. Less favorable ratings concerned items related to the prosthetists' interpersonal skills. Multivariate analyses showed that men and black persons with amputations were less likely than their female or white counterparts to have favorable perceptions about their prosthetists across all dimensions of provider quality. Persons with fewer years of schooling were also less likely to be satisfied with their prosthetist's interpersonal manner. There were no significant differences in prosthesis use, satisfaction, or assessment of prosthetists' quality based on amputation etiology or amputation level. CONCLUSIONS: Efforts should be directed at minimizing the interval from surgery to first prosthesis fitting and at improving communication between patients and prosthetists, to improve the quality of care provided to the growing numbers of persons with limb loss.     

Comorbidities in amputation: a systematic review of hemiplegia and lower limb amputation

Purpose: The purpose of this review of the scientific literature was to investigate the incidence and prevalence of hemiplegia with lower limb amputation, and to identify outcomes following the dual disability of hemiplegia and amputation. Methods: Electronic searching of the literature identified major studies examining the effects of hemiplegia on rehabilitation following amputation. Data were extracted and levels of evidence assigned for each subtopic area. Results: The summary conclusions are Level 4 evidence. The prevalence of amputation and hemiplegia is 8-18% and amputation and hemiplegia occur most often in the same leg. Once individuals with hemiplegia and lower limb amputation are selected for prosthetic rehabilitation, rate of successful functional ambulation is greater than 58%. In general there is a lower rate of prosthetic success and independence with hemiplegia than without. Predictive factors associated with success include less severe hemiplegia, laterality of hemiplegia (ipsilateral and right side), transtibial level of amputation and absence of impaired mental function. There is wide variation in length of hospital stay, but a specialty multidisciplinary team reduces length of stay. Conclusions: Patients with dual disability of hemiplegia and amputation generally benefit from a prosthetic rehabilitation program. Further study on predictive factors for outcome would be beneficial. [Box: see text].     

Psychological factors after traumatic amputation in landmine survivors: the bridge between physical healing and full recovery

PURPOSE: Limb loss due to a landmine injury is sudden and devastating. The resulting disability makes life challenging in a world where physical ability is the 'norm'. In order to better understand the psychological adjustments individuals make in their recovery from a landmine injury, the Landmine Survivors Network conducted an exploratory qualitative study to determine factors that contribute to an individual's recovery. The study examined psychosocial aspects, coping strategies, and resilience characteristics of limb loss survivors across differing cultural, societal and economic backgrounds. METHOD: Eighty-five participants (68 persons of limb loss, 10 family members, seven service providers) were interviewed using a semi-structured protocol in the USA and an open-ended format in six landmine affected countries. Data analysis was completed using grounded theory analytic strategies. RESULTS: Data indicated that the survivors' acceptance of limb loss and their state of psychological recovery were greatly influenced by the individual's resilience characteristics, social support, medical care, economic situation and societal attitudes toward people with disabilities. CONCLUSION: Recovery from traumatic amputation in landmine survivors needs to be comprehensive and coordinated, and requires addressing the individual's physical, psychological, economic and social needs within the context of family, community, and the socio-cultural environment in which they live.