Sexuality, Identity and Women with Spinal Cord Injury

Sexuality is an integral component of every individual’s identity. The literature offers limited information about the sexuality and sexual identity of women with spinal cord injury (SCI), beyond the physiological and neurological aspects. The qualitative study described in this paper aimed to explore the experiences and perceptions of a small sample of adult women with SCI regarding their sexuality post-injury. Semi-structured interviews were conducted with four women, which were audio-taped and then transcribed. Thematic analysis was adopted for analyzing the narrative data. Themes that were identified include: factors facilitating positive sexual adjustment, barriers to sexuality post-injury and lack of sexual education in the rehabilitation process. Women with SCI echoed the need to be recognized as sexual beings, despite disability. Health professionals must be willing to discuss issues of a sexual nature and need an understanding of how illness or disability may impact on sexuality, in order to adequately assist individuals with physical disabilities address sexual and intimacy issues.     

Female sexuality after spinal cord injury

A questionnaire investigating women's perception of sexuality and sexual behavior after spinal cord injury was mailed to all 74 women followed by the Central Pennsylvania Spinal Cord Injury Program. 37% responded. (After spinal cord injury, women rated sex as being 26% less important to them, but also felt 23% less satisfied with their sexual lives.) 52% were able to achieve an orgasm after their injury, but half of the women who experienced orgasm felt it was different after spinal cord injury. The biggest perceived change after spinal cord injury was perceived attractiveness of their bodies. Women rated their bodies as being only half as attractive after their injury as before. Female sexuality remains a vastly underresearched area in spinal cord injury, and much more data is needed to counsel women about sex after their injury. All members of the rehabilitation team need to be comfortable addressing issues of sexuality with their patients.Presented at the American Spinal Injury Association Annual Meeting, Orlando, FL, May 4, 1990.     

Sexual counseling and spinal cord injury

Spinal cord injury (SCI) may result in significant disruption of physical, social, vocational, psychological and sexual function. As an integral component of human behavior, it is a mistake to isolate and treat sexual activity as a separate entity, or to ignore it entirely in the rehabilitation setting. This article reviews the important variables that influence the ability of spinal cord injured individuals to perceive of self and act as a sexual being. Assessment issues are addressed, with a specific focus on those aspects of assessment that are unique to or need special consideration in treating spinal cord injured individuals. The PLISSIT mode of sex therapy is described to illustrate the interventions used with the spinal cord injured client. This model is utilized because it allows each staff member to participate according to their level of skill, knowledge, and comfort. This article demonstrates that through use of multiple therapeutic modalities it is possible for the spinal cord injured client to be rehabilitated to a satisfactory level of sexuality.     

Incidence of sexual dysfunction in neurologic disability

Patients and their families are frequently faced with changes in sexual behavior after the onset of a neurologic disability. Health professionals who familiarize themselves with the physical and psychological problems affecting sexuality can facilitate diagnosis and enhance the success of treatment programs. This article will review the available literature on the incidence of sexual dysfunction in neurologic disabilities frequently seen in the rehabilitation setting including stroke, brain injury, spinal cord injury and multiple sclerosis. Quality of life for survivors of these disorders may be improved through comprehensive rehabilitation programs that address the issues of sexuality.     

The Experience of Military Sexual Trauma and Rehabilitation for Individuals with Spinal Cord Injury/Dysfunction

It has been well documented that spinal cord injury injury/dysfunction (SCI/D) can have a substantial impact upon psychological functioning. The complications that are produced by such an event include an array of physical issues (e.g., incontinence, impotence) to social difficulties (e.g., social resource access). Originally, the rehabilitation treatment focused on the physical impairment and psychological effects on the individual. For example, literature on sexuality after injury has examined the areas of the sexual response cycle, reproductive functioning, sexual behavior, and adjustment. Today, as the professional's awareness of the incidence of sexual trauma increases, assessing the impact of trauma history is an important healthcare consideration. Within the VA Healthcare System, military sexual trauma history is routinely screened. The complexities of working with individuals with SCI/D and sexual trauma can be challenging as some may lack effective verbal and social skills necessary for resolving interpersonal conflicts and advocacy. A pragmatic clinical model to utilize social skills deficit training is described in conjunction with specific sexual trauma treatment, as a way of increasing effective working relationships to maximize rehabilitation potential. Reprinted with permission from AASCIPSW, SCI Psychosocial Process.     

Sexual Dysfunction Following Spinal Cord Injury: the Experiences of Malaysian Women

The aim of the study is to assess the changes in sexual life and sexual function in women after spinal cord injury using the validated Malay Version of Female Sexual Function Index. Thirty-three women with spinal cord injury from the Spinal Rehabilitation Unit of a tertiary hospital in Malaysia participated in this study. A comparison was made between this group of women and a control group comprising 34 women matched for age and marital status. The findings showed that 40% of the women continued to have sexual activity after injury. Frequency of sexual activity and desire was lower among women with spinal cord injury, but the ability to achieve arousal, lubrication, orgasm and overall sexual satisfaction did not differ from those of the control group. These findings imply that it is possible for women with spinal cord injury to have an active, satisfying sexual life in spite of changes in sexuality caused by the injury.     

Training the Interdisciplinary Team in Sexuality Rehabilitation Following Spinal Cord Injury: A Needs Assessment

Historically, the management of sexuality issues in spinal cord injury rehabilitation has received scant attention as a staff training issue. This has occurred despite evidence in the literature identifying significant barriers to the provision of sexuality rehabilitation. This paper reports on a needs assessment conducted within an Australian spinal cord injury rehabilitation service to identify the training needs of staff in relation to client sexuality. Using the Knowledge, Comfort, Approach and Attitudes Towards Sexuality Scale (KCAASS), a previously developed theoretical model and questionnaire, 90 multidisciplinary staff were surveyed. A combination of open and closed questioning techniques were used. While the findings suggest some differences between disciplines, the training needs of the interdisciplinary team were surprisingly similar. Knowledge is required in the areas of counselling, professional boundary setting, fertility and assistive devices while specific training is needed to promote staff comfort in dealing with personal approaches from clients.     

New Sexual Repertoires: Enhancing Sexual Satisfaction for Men Following Non-traumatic Spinal Cord Injury

Sexuality is an important priority for people following spinal cord damage (SCD), due to the impact on sensory and motor function, including paralysis and associated mobility restrictions. Men living with SCD report difficulty in achieving and maintaining erection, impaired capacity for orgasm (with or without ejaculation), and increased likelihood of retrograde ejaculation as significant challenges for sexuality. The implications of these issues for men following non-traumatic SCD (spinal cord dysfunction or SCDys) has not been examined. Drawing on interviews with eight heterosexual men following SCDys, this paper seeks to examine the factors that impact sexual satisfaction. Due to a focus on coitus and the significance of erectile function in this, most participants reported dissatisfaction with their sexuality post-SCD. However, this could be overcome through expanding their sexual repertoires. Through providing information and education about non-coitus focused expressions of sexuality, there is scope for sexual rehabilitation services to significantly increase the quality of life of men after SCDys.     

Sexuality After Injury: Interviews with Women After Traumatic Spinal Cord Injury

The aim of this study is to illuminate sexual experiences in women after traumatic spinal cord injury (SCI), including psychological, physical and social barriers that will have to be overcome to resume a sexually active life with a partner. Interviews with eight women were performed. The women were 20–43 years old, previously healthy, with experience of stable heterosexual relationships both before and after SCI. The interviews covered three main areas: 1. The first sexual contact after injury: expectations, concerns, outcome; 2. Communication with partner on sexual matters, before and after injury; and 3. Sexual activity after injury: limitations, compensatory strategies. In addition, advice from the women to newly injured and rehabilitation staff/counselors was requested. Results suggest a strong influence of pre-injury sexual behaviour on post-injury sexual adaptation. A positive attitude towards sexuality and good communicative skills seem to be of particular importance for a favourable outcome of sexual rehabilitation. Even under such circumstances, however, SCI as a rule leads to significant loss of sexual ability. A realistic approach is therefore recommended in counseling, taking the mourning of loss of function into consideration, and allowing the patients to express their grief. Thus, sexual rehabilitation programs need to address a dynamic process of mourning and coping, rather than merely teaching skills for having sexual intercourse after SCI.     

Sexual Self-esteem and Body Image of South African Spinal Cord Injured Adolescents

Although adolescents sustain a large portion of spinal cord injuries, the area of spinal cord injured adolescents and the issues surrounding their sexuality are under-researched. This is the first South African study on the sexuality of spinal cord injured adolescents and attempts to address this paucity. It is generally postulated that the sexuality of adolescents who have sustained SCI will be detrimentally affected by the consequences of having a physical disability, resulting in developmental lags relative to non-disabled peers. The focus of this article is to explore the impact of spinal cord injury on adolescents sexual self-esteem and body image. A qualitative study was conducted, with data being collected via in-depth individual interviews, which were subsequently analyzed thematically. A disparity was found between dominant ableist discourses of the SCI adolescent as a sexually immature and passive spectator, and the lived experiences of the participants involved in the study. The study concluded that entrenched socially constructed attitudes appear to limit the opportunities for spinal cord injured adolescents to express their sexuality more than the limitations by their disabilities.     

The Development of a Scale to Assess the Training Needs of Professionals in Providing Sexuality Rehabilitation Following Spinal Cord Injury

The training needs of rehabilitation professionals in the area of sexuality and sexual function, particularly following spinal cord injury (SCI) has received little attention in the literature. Specifically, there is negligible theoretical discussion related to staff training needs, as well as a paucity of standardised scales to measure these needs. A conceptual model was developed encompassing staff knowledge, comfort, and attitudes towards sexuality following SCI. Using this model, a scale was developed, evaluated, and refined. Factor analysis supported the construct validity of the scale in measuring the existing conceptual model outlined but highlighted the existence of a separate construct related to personal approaches from clients. The subsequently named Knowledge, Comfort, Approach and Attitudes towards Sexuality Scale (KCAASS) demonstrated high levels of internal consistency across the four conceptual domains. The KCAASS has utility for rehabilitation facilities interested in identifying and targeting training initiatives related to addressing client sexuality needs following SCI.     

Sexuality and the Spinal-Cord-Injured woman: An interview

The following interview of a 33 year old woman with a spinal cord injury includes information about one person's acceptance of her disability; sexual sensations, arousal and orgasm; and relationship issues. It is excerpted from the book,Female Sexuality Following Spinal Cord Injury, which includes in-depth interviews with 19 spinal cord injured women and with professionals from the fields of medicine, psychology, psychiatry, physical and vocational rehabilitation, and human sexuality.M. Elle Becker completed year-long training in sexuality and disability education and counseling at the Human Sexuality Program, Department of Psychiatry, University of California, San FranciscoPermission has been given to reprint this article which is an excerpt from the book by E.F. Becker,Female Sexuality Following Spinal Cord Injury, 1978, copyrighted and published by Accent Special Publications, Cheever Publishing, Inc., P.O. Box 700, Bloomington, IL 61701. Preparation of this article was supported, in part, by Grant MH 14346-03, NIMH.     

The Experience of Four Individuals with Paraplegia Enrolled in an Outpatient Interdisciplinary Sexuality Program

Spinal cord injury has a significant impact on an individual’s physical, emotional, as well as sexual functioning. Four consecutive males with spinal cord injury were referred to the outpatient spinal cord injury sexuality program at an urban Veterans Affairs Medical Center and seen by an interdisciplinary team comprised of a nurse, physician and psychologist. They felt that their questions had been answered and their emotional well-being had been appropriately addressed in a respectful environment and effective process. Results suggest that availability of continued access to counseling regarding sexually related issues is very important and that patients can benefit from an interdisciplinary approach in addressing functional and emotional needs.     

A Longitudinal Study of Sexuality Training for the Interdisciplinary Rehabilitation Team

Discipline specific and multidisciplinary training programs have been developed to provide practitioners working in health and disability fields with various combinations of knowledge, skills, attitudes and practitioner comfort important for such discussions. There is little, however, which demonstrates the long term effectiveness of such training programs. The current study is a 2-year follow-up to a randomized controlled trial that examined the effectiveness of a sexuality training program for rehabilitation practitioners working within spinal cord injury rehabilitation. Using both questionnaire-based and qualitative data, findings suggest that training can have long-lasting effects on practitioner knowledge, comfort and attitudes in addressing sexuality issues with clients. Training that is developed around the individualized needs of practitioners and the settings within which they work may be particularly effective. Future research is needed to explore the applicability of this type of training to other rehabilitation and healthcare settings.     

Sexuality and Women with Spinal Cord Injury

Women with spinal cord injury (SCI) have unique concerns and problems related to their sexuality. The purpose of this study is to assess sexual issues in women with SCI, for better management and rehabilitation of such patients. Consequently, 40 such women were interviewed based on a standardized questionnaire. Evaluation of sexual activity, medical problems most significantly interfering with sexual activity, menstruation, pregnancy, child bearing and relationships was done. Interest in sex and importance of sex in lives did not change significantly after SCI. The key concerns after SCI were sexual, bladder and bowel dysfunctions, bed sores, pain, spasticity and satisfaction of partner and cultural taboos. Only, 30% women had received information on sexual matters, that too to isolated problems. There is a distinctive need for clinical attention, education, research and development around gynaecological/reproductive, sexual and urogenital issues unique to women with SCI in India.     

Sexual Issues and Concerns: Tales of Chinese Women with Spinal Cord Impairments

Background Much has been written about the pathophysiological impact of spinal cord impairment (SCI) on sexual function in women, yet the literature offers only sparse coverage of its psychological and emotional impacts on female sexuality, and the factors which may influence the maintenance of sexual identity as a woman with physical disability.Methodology To gain insights into sexual experiences and concerns, in-depth interviews were conducted with 10 Chinese women with SCI. Narrative data on marital relationships, sexual identity, sexual knowledge, and sexual satisfaction was transcribed and the content analyzed.Results When disability intrudes in a woman’s life, sexuality is reshaped against the foundation of previous sexual experiences and expectations, especially for women who acquired disabilities in adulthood. Constructions of sexuality among these women encompassed broader areas than the sexual act alone. These included the couple’s adjustment to her disabilities, society’s perception of a woman’s image, internalization of messages about women’s roles within the family, the attitude of health professionals towards sexuality, and the onset of disability.Conclusion Sexuality is an important health concern for women who live with long-term physical disabilities and should be acknowledged by sensitive and responsive health practices. Health care professionals need to renounce the sexual myths and stereotypes and genuinely attempt to understand the possible impact of SCI on women’s sexuality.     

If not the Disability, then what? Barriers to Reclaiming Sexuality Following Spinal Cord Injury

Human sexuality has been medicalized and largely reduced to its physical components. This has led to a focus on the performative part of sexuality, and to a lack of interest in its social component. Men with spinal cord injury often report an unsatisfying sexual life, with limited chances to express their sexuality. This study shows that sociocultural barriers may be as disabling as physical impairment. The participants of this qualitative study felt that several barriers compromised their right to a satisfying sexual life, including certain social beliefs and attitudes (e.g. social disapproval and exclusive notion of sexuality), lack of employment, inappropriate personal assistance and inaccessibility among others. Impairment per se was not viewed as a barrier, since the new situation assumed status of normality. It is suggested that changes in education as well as the removal of physical barriers may positively influence societal attitudes and make sexuality more “accessible” to disabled people.     

Women with complete spinal cord injury: a phenomenological study of sexual experiences

This study examines psychosocial, emotional, and relationship aspects of sexuality in the lives of 15 women who sustained complete spinal cord injury (SCI) between the levels of T6 and L2. Phenomenological interviews were organized to chronologically sequence events with the intention of describing the trajectory of sexuality in women with complete SCI. A set of themes emerged from postinjury data that were labeled cognitive-genital dissociation, sexual disenfranchisement, and sexual rediscovery. Broadening the scope of the research beyond the physiological offers insight as to the interplay between the mind and sexual response and guidance for educational and therapeutic interventions.     

Sexuality Re-education Program Logic Model for People with Traumatic Brain Injury (TBI): Synthesis via Scoping Literature Review

Acknowledging the heightened risk of psychological, physical, and sexual harm for people with brain injury promotes sexual health and safety. Ignoring sexuality concerns is a serious deficit of modern-day rehabilitation programs. This article utilizes a disability lens to form the basis for our scoping review by illustrating how institutions can repress people with disabilities. The literature regarding brain injury shows socio-cultural characteristics undermine efforts to address sexuality programming for people with brain injury. The authors examine the effects of traumatic brain injury (TBI) and explore the components for a sexuality re-education program by building a Logic Model. A content analysis approach is used to form a literature map for the Logic Models’ inputs, outputs, and outcomes. Key themes to the sexuality re-education of people with TBI include: anatomical vocabulary, sexual safety, resiliency and rejection, social skills training and communication, and sexual self-identity, amongst others. This article supports the healthy and safe sexual re-adjustment of people with brain injury. Full disclosure through human sexuality re-education ensures people with a brain injury remain active citizens by maintaining equality with their community members.

     

Sexuality and Disability: The Missing Discourse of Pleasure

In the realm of sexuality and disability there is public discourse on deviance and inappropriate behavior, abuse and victimization, asexuality, gender and orientation with regard to women, and reproductive issues in women and men. However, there seems to be a missing discourse of pleasure. The purpose of this talk is to shed some cultural and historical insight into why this may be so, to argue why sexual pleasure is important to quality of life, to point out a few of the consequences of not including a discourse of pleasure, to share some of my research on sexual pleasure in people with spinal cord injury (SCI), and to make a plea for inclusion of sexual pleasure in the disability studies agenda.