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.     

Ten sexuality programs for spinal cord injured persons

Ten sexuality programs for spinal cord injured persons are described. These programs are all housed at SCI hospital and rehabilitation facilities. Program components considered include: characteristics of SCI population, initiation of sexuality-related services, sexuality services provided, follow-up procedures, audio-visual and printed resources, and staff training.Sophia Chipouras was Associate Project Director for the Sex and Disability Project in Washington, D.C. She worked with three other staff members to develop a handbook about sex education/counseling services for disabled people. For more information, write to her at Route 2, Box 5 BB The Plains, VA. 22171.     

The Effectiveness of a Sexuality Training Program for the Interdisciplinary Spinal Cord Injury Rehabilitation Team

While there is evidence to support consideration of client sexuality needs in the provision of rehabilitation services to people with spinal cord injury (SCI), the interdisciplinary team rarely receives training in this area. The current study aimed to examine the effectiveness of a consumer-driven sexuality training program in improving staff knowledge, comfort (general and personal) and attitudes. Using a local needs assessment to identify training needs and the Permission, Limited Information, Specific Suggestions and Intensive Therapy (PLISSIT) model as a training framework, a sexuality training program was developed in one Australian SCI service. A randomized controlled trial was conducted and significant improvement was found in all domains for the treatment group – Knowledge(χ²= 46.141, p< 0.001), Comfort (χ²= 23.338, p< 0.001), Approach(χ²= 23.925, p< 0.001) and Attitude (χ²= 15.235, p< 0.001) compared to the control group. Changes were found to be maintained at three month follow-up – Knowledge (Z=−5.116, p< 0.001), Comfort (Z=−3.953, p< 0.001), Approach (Z=−4.103, p< 0.001) and Attitudes (Z=−2.655, p< 0.001). These results support the use of an individualized needs-based sexuality training program in fostering staff knowledge, comfort and attitudinal change in an interdisciplinary SCI rehabilitation service.     

Addressing Sexuality as Standard Care in People with an Upper Limb Deficiency: Taboo or Necessary Topic?

The purpose of this paper is to analyze whether professionals who work with people with an upper limb deficiency (ULD) received questions about sexuality from their patients and whether they addressed sexuality themselves, and to analyze their knowledge and comfort level, approach and attitudes towards sexuality. An online questionnaire, including questions on self-perceived sexological competence and the Knowledge, Comfort, Approach and Attitudes towards Sexuality Scale (KCAASS) was used to asses these aspects. One out of three professionals had received a question about sexuality from their patients. Nearly one out of five professionals had addressed sexuality themselves. Professionals who received a question about sexuality from patients or addressed this issue themselves had significantly higher scores on self-perceived knowledge about sexuality and on self-perceived conversation skills compared to professionals who did not. The scores on the KCAASS Knowledge and Comfort of professionals who received a question about sexuality or addressed the issue of sexuality were significantly higher than those of professionals who did not. Sexuality is thus only scantly discussed by professionals working with patients with an ULD. Professionals indicated they do not feel confident nor comfortable enough to address this issue. They also experience a lack of appropriate knowledge to address sexuality with patients. Professionals reported a need for courses and training on both knowledge and conversation skills concerning sexuality. In addition, a protocol and necessary facilities need to be provided for the team working with people with an ULD in order to be able to address sexuality systematically.     

Sexological Competence of Different Rehabilitation Disciplines and Effects of a Discipline-specific Sexological Training

Dealing with sexual problems due to disease or disability is part of medical rehabilitation, but both patients and professionals experience barriers to discuss sexual issues. A brief discipline-specific sexological training for rehabilitation professionals was therefore developed and evaluated in two rehabilitation centers in The Netherlands. Among the 283 participants were physicians (42), physical therapists (38), occupational therapists (40), psychologists and social workers (26), nurses (101), and other disciplines (36). Measurements before training, after training, and at 3–4 months follow-up showed increase of self-rated sexological competence and of scores on the Knowledge, Comfort, Approach, and Attitudes towards Sexuality Scale (KCAASS) during the training that were maintained at follow-up. Disciplines differed in sexual competence before training and in increase of sexual competence after training. Implementation of the training in other rehabilitation centers is recommended.     

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.     

The Development of a Regional Association to Address the Sexuality Needs of Individuals with Disabilities

This article describes the development of a regional Association to address the needs for sexuality related staff training, and consumer and family education. The Association completed several initial steps including generating a philosophy statement and a statement of basic rights; conducting a needs identification and offering training for professionals and families. Further steps followed from the concerns of providers regarding the availability of appropriate educational resources. The Association collected information about available resources and developed and piloted a tool to evaluate these curricula. This article will also discuss the Associations's recommendations for future expansion of networking activities.     

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.     

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.     

Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability

The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author’s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author’s design have been used in the research. Likert-type scale “Perspective of intellectual disability” has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author’s own design have been used: a Likert-type scale “The essence of sexuality in persons with an intellectual disability” which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.     

Sexuality in Stroke Care: A Neglected Quality of Life Issue in Stroke Rehabilitation? A Pilot Study

Although there is a substantial body of literature on the physical and psychosexual consequences of stroke, there is a paucity of empirical studies on the experiences of rehabilitation professionals in addressing sexuality issues with patients during the rehabilitation process. This is the first small-scale pilot study in Northern Ireland, informed by a comprehensive literature review, which explores the experiences of health and social care professionals in addressing sexuality issues with patients and their perceptions of the training they require in this area of stroke rehabilitation. Questionnaire survey data were collected from community and hospital based stroke professionals in a Health and Social Services Trust in Northern Ireland. The study groups comprised nurses, doctors, physiotherapists, occupational therapists, speech and language therapists and social workers. The findings revealed that although the majority of staff had been asked for advice on sexuality issues during rehabilitation, most of them had received no training in this aspect of stroke rehabilitation since joining stroke services. The findings suggest that all rehabilitation professionals need to become more knowledgeable about sexuality issues in stroke care and could benefit from further education and training in comprehensive sexual health care.     

The Impact of Contextual Factors on Comprehensive Sexuality Education for Learners with Intellectual Disabilities in South Africa

Adolescents and youth with disabilities in South Africa still lack access to sexual and reproductive health and rights services including comprehensive sexuality education, which may increase their vulnerability to SRHR issues such as HIV and sexual violence. This is exacerbated for learners with intellectual disabilities whose educators often lack skills and tools to accommodate these learners in comprehensive sexuality education lessons. The following paper outlines the findings of a formative evaluation of an innovative sexuality training approach for educators of learners with diverse disabilities (Breaking the Silence approach). This approach was developed and piloted with educators across eight schools for learners with intellectual disabilities in KwaZulu-Natal, South Africa. The paper discusses the educators’ understanding and experiences of using this approach. The findings revealed that although educators were able to implement parts of the approach, contextual factors impacted the degree of implementation. These factors were related to perceptions of socio-cultural norms, interpersonal engagement with peers and management, the structural environment of school settings, and the wider community setting. Educators began to address cultural taboos related to talking about sexuality, but were challenged by untrained staff and the larger socio-cultural context, which includes a heighted risk of sexual violence against their learners. The paper concludes with recommendations for a further investigation of the approach within a whole school setting considering the needs of educators to not only acquire skills and knowledge but also to address their larger socio-cultural context in which they have to implement comprehensive sexuality education.     

Sexual Rehabilitation Services after Spinal Cord Injury: What Do Women Want?

Purpose: To explore and describe women’s experiences and concerns related to inpatient sexual rehabilitation.Participants: Twenty-four women who experienced traumatic SCI between 17 and 63 years of age. Methods: Semi-structured interviews with follow-ups were conducted on topics including amount and type of inpatient sexual education and counseling experiences, sexual concerns after injury, and suggestions regarding sexual rehabilitation approaches and activities.Results: Multiple themes emerged. Overarching themes included the importance of timing and honoring individual differences. Only two women reported receiving in-depth sexual rehabilitation services. Sexuality was not a priority soon after injury for a majority but assumed greater importance later. Participants believed sexuality should be broached during inpatient rehabilitation and introduced by the health professional. Reactions to healthcare professionals’ communication styles and behaviors were described.Conclusion: Participants’ feedback can help inform training and practice of rehabilitation professionals who w ork with women with SCI and other acquired disabilities. Concrete suggestions are offered.     

Exploring well-being services from the perspective of people with SCI: A scoping review of qualitative research

ObjectiveWell-being after spinal cord injury is affected by a range of factors, many of which are within the influence of rehabilitation services. Although improving well-being is a key aim of rehabilitation, the literature does not provide a clear path to service providers who seek to improve well-being. This study aimed to inform service design by identifying the experience and perspective of people with SCI about interventions targeting their well-being.MethodThe scoping review of qualitative literature used thematic analysis to identify and categorize themes related to service activities, valued aspects, limitations and perceived outcomes.ResultsThirty-eight studies were selected, related to a range of service types. Most studies did not adopt a well-being conceptual framework to design and evaluate the services. People with SCI particularly valued being treated with dignity, positive expectations, increased autonomy and peer support. Improvements to well-being were reported, including many years post-SCI. However, people with SCI reported limited opportunities to engage in such services.ConclusionsRehabilitation services can improve well-being across the lifetime of people with SCI, but gaps in service provision are reported. The review identified valued aspects of services that may inform service design, including staff approach and positive expectations, having own skills and worth valued, peer support and interaction, autonomy in valued occupations, and long-term opportunities for gains.KEYWORDS: Well-being, quality of life, spinal cord injury, rehabilitation, intervention, qualitative scoping review     

Development of a patient needs assessment model for pulmonary rehabilitation

Patients with chronic obstructive pulmonary disease are often referred to pulmonary rehabilitation programs to manage their symptoms and the consequences of the disease on their lives. Finding ways to target programs to a specific patient's needs could help improve individual response to the program. The purpose of this study was to develop a conceptual model for the assessment of patients' rehabilitation needs by using a grounded theory approach. Focus groups, consultations of medical charts, and a literature review helped us develop a conceptual model characterized by the following categories: need recognition, knowledge, motivation, expectations, goals, ability to fulfill needs, and the ability for personal adjustment. Based on a content matrix reflecting the conceptual model and disease consequences, items to be included in a prototype instrument were formulated and a preliminary validation phase was conducted.     

Sexual questions and comments on a spinal cord injury service

Fifty-one staff members in a spinal cord injury (SCI) rehabilitation setting rated 47 sexual questions and comments with which they might be confronted by SCI patients on the basis of the amount of discomfort they would feel. The subjects indicated which of the situations had occurred to them. Finally, for 31 of the items, the staff rated on a 5-point scale how informed they were to deal with the situations. The most highly rated situations are presented, as well as interrelationships among the various ratings, demographic variables, and professional disciplines.     

Development of the Workload Analysis Scale (WAS) for the assessment and rehabilitation services of Ballarat Health Services

This study describes the development of the Workload Analysis Scale (WAS), designed to predict the likely workload involved for social workers working with clients in the assessment and rehabilitation areas of Ballarat Health Services (BHS). Such a scale would allow more equitable case allocation, flagging of difficult cases, better work prioritisation, training of new staff and tracking changes over time. Items for the scale were developed in consultation with workers. Initially the scale consisted of 33 items divided into five subscales, relating respectively to treatment factors, demographics, psychosocial complexity, planned interventions and variable staff factors. Eight staff members of BHS contributed to the completion of the scale for 111 clients seen over a four month period on the rehabilitation and assessment wards. Initial analysis of the data led to a modification of the scale and subsequent satisfactory measures of reliability and validity.     

Sexual education in spinal cord injury rehabilitation: Current trends and recommendations

Persons with spinal cord injuries (SCI) (N=458) representing a national sample were surveyed by mail to determine trends in the provision of sexual education and sexual counseling services in rehabilitation programs. Of the competed responses (N=251), 45% remembered receiving such services. When sexual education/counseling services were provided, the components of the services varied considerably, and; for the most part, the subject of sexuality was superficially treated. Only 48% of those who received such services reported the services they received met their needs (N=53). The odds of not receiving sexual education or sexual counseling services for female respondents were about two times greater than for male respondents. The study also reveals a gap between services provided during rehabilitation and services desired by consumers. Recommendations are then offered for the development of sexual education and sexual counseling programs that may better meet the needs of persons with SCI.A thesis presented to the Department of Epidemiology and Public Health, Yale University, New Haven, Connecticut, 1991.