Addressing the sexual concerns of persons with traumatic brain injury in rehabilitation settings:

A framework for action.

Grahame Simpson MA (Counselling)

Social Work Team Leader

Brain Injury Rehabilitation Unit, Liverpool Hospital,

Sydney, NSW, Australia

Correspondence to:

Mr Grahame Simpson

Brain Injury Rehabilitation Unit

Liverpool Hospital

Locked Bag 7103

Liverpool BC

New South Wales 1871

Australia

Ph: (61 2) 9828 5495

Fax: (61 2) 9828 5497

E-mail: grahame.simpson@swsahs.nsw.gov.au

URL: http://www.swsahs.nsw.gov.au/biru

Abstract:

Traumatic brain injury (TBI) impacts upon people's sexuality with 50 to 60% of persons reporting some level of disruption post-injury. Rehabilitation aims to take a holistic approach in treating the needs of the individual recovering from injury or illness, however the issue of a person's sexual concerns keeps falling off the agenda. Currently, only small proportions (ranging from nil to 15%) of patients/family members report that rehabilitation health professionals made inquiries about whether they had any sexual concerns during their rehabilitation episode.

If we are serious in addressing the sexual needs of people recovering from TBI, an agency framework is needed so that service provision does not solely depend on the interest of individual staff members. An ideal framework contains five areas of service provision including: (i) the availability of consumer sexuality information (ii) education about sexual changes that may occur after TBI (iii) assessment of people's sexual issues and/or functioning (iv) provision of treatment and where necessary (v) referral to more specialised sexual health/therapy services. An underlying agency structure is required to ensure that these services are provided with both quality and consistency. The underlying structures include the development of agency policies and procedures, an understanding of state sexuality-related legislation, regular staff training, sexuality resources development and the creation of inter-service networks between rehabilitation and specialist sexuality services.

Rehabilitation staff do not require extensive levels of training or complex levels of skill to be able to meet many of the basic sexual concerns of persons with TBI and their family members. The establishment of an agency sexuality framework is one step towards putting the issues of addressing patient sexual concerns and enhancing the quality of their sexual lives back onto the rehabilitation agenda.

Introduction

Traumatic brain injury (TBI) impacts upon people's sexuality with a number of studies finding that between 50% and 60% of persons report some level of disruption post-injury (Kreutzer & Zasler, 1989; O'Carroll et al., 1991; Kreuter et al., 1998). Rehabilitation aims to take a holistic approach in seeking "the restoration of patients to the highest level of physical, psychological and social adaptation attainable" (World Health Organisation, 1996, p.1), however the issue of a person's sexual concerns seems to keep falling off this agenda. Currently, only small proportions, ranging from nil to 15%, of people with TBI and their family members report that rehabilitation health professionals made inquiries about whether they had any sexual concerns during their rehabilitation episode (Zinn, 1981; Kreuter et al., 1998). The two studies reporting these findings spanned the past 20 years and suggest that the avoidance or at best "benign neglect" (Mapou, 1990) of patient/client sexuality issues may be both endemic and chronic in brain injury rehabilitation services (e.g. Blackerby, 1990; Ducharme & Gill, 1990). Clinical experience suggests that as a consequence of this avoidance and neglect, many people with TBI are suffering from undetected but treatable sexual concerns.

In the face of the current service delivery problems, Griffith and Lemberg have not only affirmed the importance of rehabilitation services addressing client sexual concerns but have extended this, stating that "all professional disciplines share responsibility for sexual rehabilitation" (1993, p.100). Given this imperative, the aim of this presentation is to describe a framework that provides brain injury rehabilitation agencies with a structured approach to the introduction or upgrading of their capacity to address patient/client sexual concerns. The tripartite framework consists of an underlying philosophy, service provision guidelines and recommended supporting organisational structures.

Underlying philosophy. The underlying philosophy provides the foundation for the framework and shapes all aspects of the service provision and organisational structures. Service provision. Clear guidelines outlining the agency approach to the assessment and treatment of patient/client sexual concerns are essential. The service guidelines proposed in this framework are structured by modality of service provision, rather than by categories of particular clinical issues. The emphasis on modality provides a focus on the roles, skills and knowledge needed by all brain injury rehabilitation staff that can then be used to address a broad range of patient/client sexual concerns. Supporting organisational structures. Supporting organisational structures are an essential co-requisite of service provision, so that addressing patient/client sexual concerns can be sustained by a service over the long term without having to depend solely on the interest of individual staff members.

The framework outlined in this presentation constitutes a comprehensive yet parsimonious model that provides clear guidelines for brain injury rehabilitation services interested in sexuality service provision.

Underlying philosophy

There are a number of important principles that make up a philosophy and undergird the work of addressing the sexual concerns of patients/clients with TBI. Firstly, the definition of sexual concerns needs to be broad, including areas such as sexual rights and responsibilities, gay and lesbian issues, the right to not be sexual if so desired, self-pleasuring, meeting people and establishing relationships, keeping safe from sexual abuse/exploitation, adjusting the sexual relationship with an existing partner, accommodating physical disabilities, assessing and treating sexual dysfunction, sexual harassment and inappropriate sexual behaviour, safer sex, issues related to accessing sex workers, fertility, contraception, and pregnancy (Simpson, 1999a). People with TBI may have sexual concerns in one, some or many of these areas.

Secondly, the primary aim of the work is to enhance the quality of persons' sexual lives. In the literature, this has been referred to as enhancing a patient/client's "sexual wellness" (Medlar, 1993; Ducharme, 1994). This is an important emphasis to maintain, as there is always the risk that brain injury rehabilitation services will focus attention on the management of inappropriate sexual behaviour, with little thought given to other dimensions of patient/client sexuality. Thirdly, in addressing sexual health concerns, the work should be underpinned by a number of core propositions, covering choices, values, self esteem, sexual rights, decision-making and responsibility. Finally, there needs to be a recognition that much of this work is not complex, and that all disciplines involved in brain injury rehabilitation, with some workshop or inservice training, can start to effectively meet many of the sexual health concerns of their patients/clients.

Five areas of service provision

I will now address the 5 modalities of service provision detailed in the framework. The five areas organised in increasing level of intervention complexity.

Provision of information resources. In brain injury agency settings, staff encounter two kinds of information needs. Firstly, people with TBI will have the same gaps and misunderstandings in their knowledge of sexuality as exists in the general community. In addition to this more general ignorance, people with TBI will also lack knowledge about the specific impacts on sexuality stemming from their injury. An initial approach to meet these needs involves the provision of information resources about a range of general and TBI-specific sexual concerns. Examples of information resources that can be made available include sexuality-specific information booklets for people with TBI and their family members (Griffith & Lemberg, 1993; Simpson, 1999b; Dawson et al. 1999). Also, there is information on sexuality included within booklets addressing the global impact of TBI (Gronwall et al., 1996). Information on sexuality can be included within generic service information leaflets or booklets (Brain Injury Rehabilitation Unit, 2000). There is information on brain injury specific or generic disability websites that address relationship and sexuality issues (e.g. www.swsahs.nsw.gov.au/biru; www.eBility.com) and finally, government produced general sexual health literature.

Provision of sex education. The provision of sex education involves staff in the active transmission of information about sexuality after TBI. Sex education for people with TBI can address any or all of the areas outlined in the definition of sexuality provided in the underlying philosophy above. The need for sexuality education amongst people with traumatic brain injury has been highlighted by a number of authors (Blackerby, 1990; Medlar, 1998), however, there have been few resources to date available to assist brain injury staff in providing such education. Some recent initiatives to address this gap include the SEP Program (Medlar, 1998) in Massachussetts USA and the "You and Me" program, a manual designed for brain injury staff to provide sex education programs to people who have sustained TBI as an adult (Simpson, 1999a).

Assessment. Assessment does not need to proceed the provision of information resources or sex education as these can be provided globally and pro-actively (Blackerby, 1990), often before patients/clients have identified sexual concerns. However, this leads into an important question about assessment, namely how are client sexual concerns to be identified. Ducharme (1994) typifies the pro-active approach, recommending that sexual histories be taken of all patients/clients as a regular component of the rehabilitation service, however, this may be unnecessarily intrusive. On the other hand, the reactive approach, where staff leave it to the person with TBI to identify any sexual concerns, is also unsatisfactory. Unfortunately, one survey in the United States has found that the reactive approach was the strategy of choice for over 50% of 129 brain injury rehabilitation staff surveyed (Ducharme & Gill, 1990). One alternative steering between these approaches is to utilise a screening strategy, that includes:

§ A simple question on intake forms or in initial assessment interviews aiming to elicit information about the presence of sexual concerns, as part of a battery of questions about various areas of post-injury psychosocial functioning.

§ The availability of information resources and the provision of sex education providing both cues that sexuality can be an issue after TBI and also opportunities for patients/clients to raise any concerns

§ Staff through clinical observation identifying particular patients/clients as having sexuality issues.

A wide range of rehabilitation staff may be involved in such screening activities.

When a sexual health concern has been identified, there are a number of assessment approaches and measures currently available that require differing levels of expertise or training. These include:

§ GRASP (General Rehabilitation Assessment Sexuality Profile) developed by Zasler and Horn (1990) which divides assessment into the three areas of sexual history taking, sexual physical examination and clinical sexual diagnostic testing and can only be conducted by a physician.

§ Taking a sexual history post-TBI which covers some brief demographic and biographical details, a history of pre-morbid medical disorders, pre-injury psychosexual development including prior sexual experiences, and current post-injury sexual functioning (Blackerby, 1990; Zasler & Horn, 1990; Ducharme, 1994; Zasler, 1995). The information gathered can provide a basis for identifying issues that require further assessment or intervention. A range of rehabilitation staff including social workers, psychologists and nurses, who have had the appropriate training, are able to take such a history.

§ There are four categories of assessment measures that can be used to determine the impact of TBI on sexual functioning including:

o Generic measures of sexual functioning and behaviour. Two that have been administered with brain injury samples Golombok Rust Inventory of Sexual Satisfaction (O'Carroll et al., 1991) and the Derogatis Inventory of Sexual Functioning (Sandel et al., 1996) and the AIDS Test (Kramer et al., 1993).

o Brain-injury specific measures. The Psychosexual Assessment Questionnaire (Kreutzer & Zasler, 1989), developed specifically to assess the sexual functioning of males with TBI. The Sexual Interest and Satisfaction Scale (Kreuter et al. 1998) is a 5-item scale modified from a similar scale for people with SCI (Siosteen et al. 1990). It examines peoples' sexual desire, their sexual ability, the priority they give sexuality and their level of satisfaction.

o Brain injury specific protocols devised for particular research projects (Kreuter et al., 1998; Aloni et al., 1999)

o Some discipline specific assessments in areas such as communication or physical functioning (Zasler & Horn, 1990; Griffith & Lemberg, 1993; Burton, 1996) which also have relevance in the treatment of sexual and relationship concerns.

The use of some or all of these assessment approaches will vary from agency to agency depending on composition and level of expertise of the rehabilitation staff.

Provision of treatment. Once an issue is identified, there is limited empirical research describing effective treatment interventions for a range of sexual health concerns faced by people with TBI (e.g. Crenshaw, 1985). In this context, use of the current knowledge of the impact of TBI on sexuality and generic treatment approaches to sexual problems have been recommended as the starting point in providing treatment (Griffith & Lemberg, 1993). One way agency staff can structure treatment approaches to patient/client sexual health concerns is by use of the PLISSIT model (Annon, 1974). The PLISSIT model is a simple graded sexual counselling model that allows all rehabilitation staff, regardless of their level of training and experience, to rate their level of skill and provide intervention to a level with which they feel comfortable (Ducharme & Gill, 1990). PLISSIT is an acronym standing for Permission, Limited Information, Specific Suggestion and Intensive Therapy. Table 2 provides definitions of the four levels of the model and examples of intervention options for rehabilitation staff at each level. The options have been drawn from the literature and also brainstormed by brain injury staff attending sexuality-training workshops run by the author.

All rehabilitation staff, even if they do nothing else in the sexuality area, have a responsibility to ensure that they maintain the environment of Permission within their agency. At a minimum, this involves letting patients/clients know that it is all right to be concerned about sexual issues and linking up any patient/client who has identified a concern with staff who can address the issue (Griffith & Lemberg, 1993; Ducharme, 1994). It is important that staff are able to respond to patient/client concerns in a warm, empathic manner that demonstrates a comfort in addressing sexuality issues (Ducharme & Gill, 1990). The availability of information resources and sex education all contribute to an environment of Permission. An important adjunct in developing and maintaining this environment, is that staff also provide support and affirm members of the rehabilitation team involved in providing sexuality services (e.g. by supporting discussion of patient/client sexuality issues at team meetings).

The provision of Limited Information, using either information resources or sex education, can often be sufficient to address the sexual concerns on patients/clients. It can clear up patient/client misconceptions and ease anxieties. For example, the question often asked by people with TBI about whether they would transmit the brain injury to any future children, can be easily addressed through some basic education. Rehabilitation staff who have had training in the impact of TBI on a person's sexuality and have good communication skills are able to play a role in Limited Information. Specific Suggestions involves the provision of strategies that will address client sexual health concerns, and examples of some strategies can be found in Table 2. Staff need similar levels of training as required for Limited Information but should be careful about responding to the sexual health concerns of people with TBI in couple relationships unless they have some skill in working with couples.

If Limited Information and Specific Suggestions have not been able to resolve a person's sexual health concern, then the person may require Intensive Therapy. Providing services at this level requires more intensive training and specialised experience than can be achieved through sexuality workshops or inservice training. Whilst all brain injury rehabilitation services should be able to provide at least some interventions up to the level of Specific Suggestion, the capacity to provide Intensive Therapy will vary depending on the staff composition, level of staff expertise and geographic location of rehabilitation services. The provision of sexual counselling may not be possible in all rehabilitation settings, a number of rehabilitation services do not have medical staff on site and most services will not be able to provide sex therapy. To meet a range of patient/client sexual concerns, particularly in the treatment of sexual dysfunctions such as erectile, ejaculatory and orgasmic difficulties, rehabilitation services will need to be able to link people with TBI to the necessary expert help (Ducharme & Gill, 1990; Griffith & Lemberg, 1993). However, there are some areas of Intensive Therapy that are best provided by brain injury services, including the amelioration of communication disorders, social skills training, and the management of inappropriate sex behaviour.

Whilst all rehabilitation staff can contribute to the area of Permission, some services have identified specific staff that take responsibility for interventions at the levels of Limited Information, Specific Suggestion and where applicable, Intensive Therapy. This staff member can either provide the necessary interventions, or coordinate the various team members who have expertise to address a patient/client's sexual concern.

Referral to specialist sexual health/therapy services. It is generally recognised that rehabilitation services will not be able to address all the sexual health concerns of their patients/clients (Ducharme & Gill, 1990; Griffith & Lemberg, 1993; Simpson, 1999a). Therefore, agencies need to identify those areas of sexual health concerns that are outside their competence and experience and develop links to specialist sexual health or therapy services to address these needs.

Treatment case example (see Powerpoint presentation)

Supporting organisational structures

To provide the services outlined with both quality and consistency, it is necessary to have the following supporting organisational structures.

Development of agency sexuality policies. Agency sexuality policies set standards for decision-making and action, and provide the basis for people with TBI to have their sexual rights and needs met while reducing the danger of abuse and exploitation (Family Planning Association, 1996). Examples of issues that staff in brain injury rehabilitation services can face include: Should patients be able to keep pornographic magazines in their hospital rooms?; and Can residents in a Transitional Living Unit watch sex videos on the television in the lounge room? As staff are always making decisions when they encounter these type of issues, each service does have an implicit set of policies about the management of sexuality issues. The obvious advantage in making the policy explicit is that it ensures consistency in decision-making and all stakeholders know where they stand.

Understanding of government sexuality-related legislation. Policies must be consistent with government laws that addresses issues of human sexual behaviour (Family Planning Association, 1996) and there are Australian publications that provide a comprehensive coverage of legislation relevant to human sexual behaviour for people with disabilities (Lawrence et al., 1998).

Staff training. Staff training can lead to increased levels of comfort, confidence (Webb, 1988; Fisher et al., 1988) and skills (Ross, 1984; Neistadt, 1986; Vollmer et al., 1989) in responding to patient/client sexual health concerns. Given that rehabilitation staff have often reported a lack of confidence to deal with patient/client sexual concerns (Blackerby, 1990; Ducharme & Gill, 1990), staff training needs to build confidence and comfort, and this is best achieved through imparting knowledge and skills.

Training case example (see Powerpoint presentation)

Resources/knowledge development. All services have the capacity to identify and gather sexuality related resources, and where none exist appropriate to an agencies' needs, to develop new resources.

Creation of inter-service networks. The creation of inter-service networks has a number of reciprocal benefits. Sexual health specialists often require training about the impact of brain injury on sexual functioning, communication impairments and how to adapt counselling approaches to compensate for the cognitive impairments of people with TBI. In turn, sexual health specialists can provide sex education to patients/clients, participate in training brain injury staff, as well as provide direct services to people with TBI. This training and linkage also improves the capacity of brain injury staff to make appropriate referrals to such specialists.

Implementing the framework

There are a range of organisational strategies that can be employed to achieve changes along the lines suggested by the framework. Some options include:

§ Needs survey. Examples of needs surveys for both staff and people with TBI can be found in Medlar (1998) and Simpson (1999a).

§ Staff training. Blackerby (1990), Ducharme (1994) and Medlar (1998) all emphasise the importance of providing staff training as a starting point.

§ Sexuality committee. Ducharme (1994) recommends the establishment of an interdisciplinary sexuality committee comprised of staff with an interest or expertise in the area of sexuality as a catalyst for introducing or upgrading sexuality services.

§ Implementation of a sexuality program. An example of the implementation of a sexuality program is described by Medlar (1998).

Conclusion

Sexuality has been a neglected issue in the provision of brain injury rehabilitation services. Whilst a number of surveys have shown that staff recognise the importance of addressing patient/client sexual concerns, rehabilitation services seem to baulk at the prospect of acting on this, partially due to a lack of staff confidence linked to their self evaluations as lacking the necessary knowledge and skills. The framework described in this presentation, provides a non-threatening, structured way for services to conceptualise, introduce or upgrade sexuality services in a manner that can be maintained over the long term. Incorporating the PLISSIT model provides a useful approach to both identifying treatment interventions that can be provided as well as providing a guide for staff training. The joint use of the framework and the PLISSIT model can enable rehabilitation services to put sexuality back onto the agenda, as they seek to restore patients/clients with TBI to the “highest level of adaptation attainable” (World Health Organisation, 1996, p.1) in all areas of their lives.

Acknowledgements

Thanks to Dr. Patricia Weerakoon, Faculty of Health Sciences, University of Sydney, for her comments on an earlier draft of this paper. Thanks to Catherine Simpson for designing the PowerPoint slides.

References

Aloni, A., Keren, O., Cohen, M., Rosentul, N., Romm, M. & Groswasser, Z. (1999). Incidence of sexual dysfunction in TBI patients during the early post-traumatic in-patient rehabilitation phase. Brain Injury, 13, 89-97.

Annon, J.S. (1974). The behavioural treatment of sexual problems. Honolulu, Hawaii: Enabling Systems.

Blackerby, W.F. (1990). A treatment model for sexuality disturbance following brain injury. Journal of Head Trauma Rehabilitation, 5, 73-82.

Brain Injury Rehabilitation Unit (2000). Brain injury: Commonly asked questions. Sydney: Liverpool Health Service.

Burton, G.U. (1996). Issues of sexuality with physical dysfunction. In L.W. Pedretti (Ed.), Occupational therapy: Practice skills for physical dysfunction, (4th ed.), (pp.275-290), St Louis: Mosby.

Crenshaw, T.L. (1985). Head trauma and orgasm. Medical Aspects of Human Sexuality, 19, 115-121.

Dawson, H., Hendy, J., Simons, M. & Epps, A. (1999). Sexuality and acquired brain injury in children and adolescents: A guide for health professionals and the family, Children's Hospital Westmead, Sydney: Kids Health.

Ducharme, S. (1994). Providing sexuality services in head injury rehabilitation centres: Issues in staff training. International Seminar: Sexuality and disability. International Journal of Adolescent Medicine and Health, 7, 179-191.

Ducharme, S. & Gill, K. (1990). Sexual values, training and professional roles. Journal of Head Trauma Rehabilitation, 5, 38-45.

Family Planning Association (1996). Rights and recognition: A guide to sexuality policy and education for people with learning disabilities. Ashfield, New South Wales: Family Planning Association.

Fisher, W.A., Grenier, G., Watters, W.W., Lamont, J., Cohen, M. & Askwith, J. (1988) Students' sexual knowledge, attitudes towards sex, and willingness to treat sexual concerns. Journal of Medical Education, 63, 379-385.

Griffith, E.R. & Lemberg, S. (1993). Sexuality and the person with a traumatic brain injury. A guide for families. Philadelphia: FA Davis Co.

Gronwall, D., Wrightson, P. & Wadell, P. (1996). Head injury: The facts. A guide for families and care-givers. Oxford: Oxford University Press.

Horsley, P. & Azzopardi, S. (1990). Sexuality: Rights and choices. Victoria: Family Planning Association.

Kramer, T.H., Nelson, D.F. & Li, P.W. (1993) AIDS knowledge and risk behaviours among traumatic brain injury survivors with coexisting substance abuse. Brain Injury, 7, 209-217.

Kreuter, M., Dahllof, A.-G., Gudjonsson, G., Sullivan, M. & Siosteen, A. (1998). Sexual adjustment and its predictors after traumatic brain injury. Brain Injury, 12, 349-368.

Kreutzer, J.S. & Zasler, N.D. (1989). Psychosexual consequences of traumatic brain injury: Methodology and preliminary findings. Brain Injury, 3, 177-186.

Lawrence, A.E., Williams, S. & Smith, V. (1998). Sexuality and the law: A guide for health and community workers in New South Wales. Ashfield, New South Wales: Family Planning Association.

Mapou, R. (1990) Traumatic brain impairment rehabilitation with gay and lesbian individuals. Journal of Head Trauma Rehabilitation, 5, 67-72.

Medlar, T.M. (1993). Sexual counselling and traumatic brain injury. Sexuality and Disability, 11, 57-71.

Neistadt, M.E. (1986). Sexuality counselling for adults with disabilities: A module for occupational therapy curriculum. The American Journal of Occupational Therapy, 40, 542-545.

O'Carroll, R.E., Woodrow, J. & Maroun, F. (1991). Psychosexual and psycho-social sequelae of closed head injury. Brain Injury, 5, 303-313.

Ross, M.W. (1984). Designing sexual medical courses: A model. Medical Education, 18, 24-30.

Sandel, M.E., Willaims, K.S., Dellapietra, L. & Derogatis, L.R. (1996). Sexual functioning following head injury. Brain Injury, 10, 719-728.

Simpson, G.K. (1999a). You and Me. An education program about sex and sexuality after traumatic brain injury. Sydney: Brain Injury Rehabilitation Unit.

Simpson, G.K. (1999b). You and Me. A guide to sex and sexuality after traumatic brain injury. Sydney: Brain Injury Rehabilitation Unit.

Simpson GK. (2001) Addressing the sexual concerns of persons with traumatic brain injury in rehabilitation settings: A framework for action. Brain Impairment, 2(2).

Vollmer, S., Wells, K.B., Iacker, K.H. & Ulrey, G. (1989). Improving the preparation of preclinical students for taking sexual histories. Academic Medicine, 64, 474-479.

Webb, C. (1988). A study of nurses' knowledge and attitudes about sexuality in health care. International Journal of Nursing Studies, 35, 235-244.

Weerakoon, P. & Stiernborg, M. (1996). Sexuality education for health care professionals: A critical review of the literature. Annual Review of Sex Research, 7, 181-217.

World Health Organisation (1996). Optimuum care of disabled people: Report of a WHO meeting, Turku, Finland. Geneva: Author.

Zasler, N.D. (1995). Traumatic brain injury and sexuality. Physical Medicine and Rehabilitation: State of the Art Reviews, 9, 361-375.

Zasler, N.D. & Horn, L.J. (1990). Rehabilitative management of sexual dysfunction. Journal of Head Trauma Rehabilitation, 5, 14-24.

Zinn, W. (1981). Sexual problems in rehabilitation: Analysis and solutions. International Rehabilitation Medicine, 3, 18-25.