IT HAS BEEN 25 YEARS since William Blackerby wrote the following words in one of the first professional publications on sexuality after traumatic brain injury (TBI):
In order to be truly successful, rehabilitation services must empower disabled individuals with the ability to lead fulfilling lives. This means that successful living is more than just independent living and competitive employment. It also consists of the ability to feel good about oneself, to develop satisfying and meaningful relationships and to enjoy all the privileges, pleasures, and pain that accompany living.... Sexuality is an important aspect of living fully, of being human.1
Sexuality is an integral part of the human experience and contributes to positive self-concept and self-esteem. This is no less true for persons with disability, including TBI. The importance of sexuality to happiness and quality of life is emphasized by its inclusion in the World Health Organization's International Classification of Functioning.2 Problems with sexual functioning have been voiced as a primary concern by persons with TBI.3,4
Despite the importance of sexuality to persons with TBI, there has been a large gap in research and clinical care. During the last 2 decades of the 20th century, a series of studies documented a variety of problems in all stages of sexual functioning for persons with TBI, including desire, arousal, and orgasm.5–11 Unfortunately, the conclusions of these studies were limited by small sample size, predominantly male samples, recruitment from clinic samples, and use of measures of sexual functioning with unknown validity. There have been no empirical studies documenting effectiveness of interventions to improve sexual functioning, although several treatment models have been described.12–15 Indeed, the research on causes of sexual functioning has been so minimal that there is little guidance for treatment development.
It is with great excitement that I serve as Editor for this special issue on Sexual Functioning After Traumatic Brain Injury. The empirical studies in this issue contain large sample sizes and are of high methodological quality. They represent a substantial contribution to the state of the science in sexual functioning for persons with TBI. The lead article in this issue, by Stolwyk and colleagues, provides validation of the Brain Injury Questionnaire of Sexuality (BIQS). This is the first questionnaire on sexuality, developed specifically for persons with TBI, to address the comprehensive problems experienced. Validation of the measure in a large sample of persons with TBI in Australia showed excellent reliability and validity. The BIQS is strongly correlated, in the expected directions, with scales from the Derogatis Interview for Sexual Function–Self-Report (DISF-SR)16,17; however, the BIQS has several advantages over the DISF-SR, including allowance for comparison with preinjury functioning and for assessment of sexual function in persons who do not have a partner. In the second article in this issue, Downing and colleagues demonstrate that persons with TBI scored significantly below age- and gender-matched controls on all 3 BIQS scales. While the BIQS currently lacks normative data for comparison and remains to be validated outside Australia, it has the potential to serve as a foundation for future studies and can be used as an outcome measure for treatment studies.
This issue contains 2 articles resulting from the TBI Model Systems Module Project on Sexuality After TBI, funded by the National Institute on Disability and Rehabilitation Research. This was a collaborative study among 6 TBI Model Systems Centers. The article by Hanks and colleagues is the first longitudinal study of sexual functioning after TBI. Contrary to hypotheses, there were no significant changes in sexual functioning from 6 to 12 months postinjury, with the exception of a mild increase in arousal. The major finding of this article was that the number of persons with TBI scoring in the impaired range of sexual functioning (on the DISF-SR) remained stable across time, with about 20% to 30% of participants in the sample reporting sexual behavior or concerns in the range that would be considered statistically and clinically significant based on the normative data. Calculation of reliable change index scores showed that some individuals showed decline over time whereas some showed improvement. This highlights the need for follow along, as persons without problems at an early time point may develop them later. The second article from the TBI Model Systems Module was by Sander and colleagues, investigating predictors of sexual functioning at 1 year after injury. This prospective study, utilizing a liner regression model, indicated that older age, female gender, and lower participation were associated with greater sexual dysfunction. Older age and depression were associated with lower sexual satisfaction. This study provides a foundation for identification of those at risk for sexual dysfunction.
The article by Ponsford and colleagues provides further evidence of possible risk factors for sexual dysfunction after TBI. Those persons who were older in age, depressed, at shorter time postinjury, and less independent in activities of daily living were more likely to report problems in sexual functioning. The very large sample in this study was composed of persons ranging from 1 to 20 years postinjury, which may explain the differences in significant predictors compared with the Sander et al study. Despite differences, both studies indicate the importance of older age and greater dependence in predicting sexual problems.
The final study in this issue, by Simpson and colleagues, provides a large-sample analysis of the incidence of inappropriate sexual talk and behaviors in community-dwelling persons with TBI. Inappropriate sexual behavior is a substantial stress for rehabilitation staff and for family members/caregivers, but prior research in this area has been largely limited to case studies. This study by Simpson et al indicates a low incidence of inappropriate sexual behaviors, with most involving sexual talk only. The minority of persons with TBI who engaged in more overt sexual behaviors often also exhibited other challenging behaviors, such as aggression or other socially inappropriate behaviors. This indicates that inappropriate sexual behavior may be viewed as part of an overall disinhibition syndrome and that behavior modification must address multiple target behaviors. An important finding of the study was that persons who engaged in inappropriate self-talk rarely progressed to more overt sexual behaviors, which is useful information for rehabilitation providers.
Taken as a collection, the 6 papers in this issue greatly advance knowledge regarding the incidence of hypo- and hypersexual functioning after TBI, the evolution of sexual problems over time, and risk factors for sexual dysfunction. The large sample sizes, multicenter designs, and sound methods provide a foundation upon which treatment studies can be designed. While studies addressing the neurological and neuroendocrine underpinnings of sexual problems after TBI are still needed, we are much closer to being able to address the needs of persons with TBI regarding sexual functioning.
—Angelle M. Sander, PhD
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine & Harris Health System
Director and Senior Scientist
TIRR Memorial Hermann's Brain Injury Research Center
1. Blackerby WF. Head Injury Rehabilitation: Sexuality After TBI. The HDI Professional Series on TBI. Vol 10. Houston, TX: HDI Publishers; 1994.
2. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization; 2001.
3. Rankin TM. Rehabilitation of persons with traumatic brain injury, Appendix A. The Consumer Perspective on Existing Models of Rehabilitation for Traumatic Brain Injury. NIH Consens Statement Online. 1998;16(1):1041.
4. Gaudet L, Crethar HC, Burger S, Pulos S. Self-reported consequences of traumatic brain injury: a study of contrasting TBI and non-TBI participants. Sex Disabil. 2001;19(2):111–119.
5. Kreutzer JS, Zasler ND. Psychosexual consequences of traumatic brain injury: methodology and preliminary findings. Brain Inj. 1989;3(2):177–186.
6. O'Carroll RE, Woodrow J, Maroun F. Psychosexual and psychosocial sequelae of closed head injury. Brain Inj. 1991;5(3):303–313.
7. Garden FH, Bontke CF, Hoffman M. Sexual functioning and marital adjustment after traumatic brain injury. J Head Trauma Rehabil. 1990;5(2):52–59.
8. Sandel ME, Williams KS, Dellapietra L, Derogatis LR. Sexual functioning following traumatic brain injury. Brain Inj. 1996;10(10):719–728.
9. Kreuter M, Dahllof AG, Gudjonsson G, Sullivan M, Siosteen A. Sexual adjustment and its predictors after traumatic brain injury. Brain Inj. 1998;12(5):349–368.
10. Aloni A, Keren O, Cohen M, Rosentul N, Romm M, Groswasser Z. Incidence of sexual dysfunction in TBI patients during the early post-traumatic in-patient rehabilitation phase. Brain Inj. 1999;13(2):89–97.
11. Hibbard MR, Gordon WA, Flanagan S, Haddad L, Labinsky E. Sexual dysfunction after traumatic brain injury. NeuroRehabilitation. 2000;15:107–120.
12. Blackerby WF. A treatment model for sexuality disturbance following brain injury. J Head Trauma Rehabil. 1990;5(2):73–82.
13. Ducharme S, Gill KM. Sexual values, training, and professional roles. J Head Trauma Rehabil. 1990;5(2):38–45.
14. Ducharme S. Beyond the management of sexual problems: creating a therapeutic environment for addressing sexuality issues. In: Durgin CJ, Schmidt ND, Fryer LJ, eds. Staff Development and Clinical Intervention in Brain Injury Rehabilitation. Gaithersburg, MD: Aspen Publishers Inc; 1993:211–227.
15. Aloni R, Katz S. Sexual Difficulties After Traumatic Brain Injury and Ways to Deal With It. Springfield, IL: Charles C Thomas Publisher Ltd; 2003.
16. Derogatis LR. Derogatis Interview for Sexual Functioning–SR. Baltimore, MD: Clinical Psychometric Research; 1987.
17. Derogatis LR. The Derogatis Interview for Sexual Functioning (DISF/DISF-SR): an introductory report. J Sex Marital Ther. 1997;23(4):291–304.