Professor Grahame Simpson leads the Brain Injury Rehabilitation Research Group at the Ingham Institute for Applied Medical Research in Liverpool Sydney. His clinical position is Social Worker-Clinical Specialist at the Liverpool Brain Injury Rehabilitation Unit, Liverpool Hospital. Dr Simpson has a dual professional background as an accredited social worker and registered psychologist (counselling psychology). Dr Simpson has worked the past 30 years as a clinician
researcher addressing psychosocial adjustment to acquired brain injury including positive sexual adjustment. He authored the You and Me Sex Education Program and collaborates with a Sydney-based sexual health physician and sexual health counsellor to treat the sexual changes experienced after brain injury. Dr Simpson is Co-Editor of Brain Impairment, member of two editorial boards (Journal of Head Trauma Rehabilitation, Australian Social Work) and founding co-convenor of the International Network of Social Work in ABI.
- Why is sexuality important in neurorehabilitation?
Sexuality is a core component of our humanity. The World Health Organisation states that sexual health is a state of physical, emotional, mental and social well-being. Being able to enjoy this type of sexual health is a human rights issue for people with disability including acquired brain injury.
The mission of rehabilitation is to restore patients to the highest level of physical, psychological and social adaptation attainable” (World Health Organisation, 1996, p. 1). Despite this, very few people with brain injury report that the issue of their sexual wellbeing was addressed during their rehabilitation episode.
Most people want to engage or re-engage with the sexual dimension of their lives post-injury. A recent study found that 82% of a sample of people with brain injury in the United States had been sexually active in the first year post-injury (Sander et al., 2012).
However, a growing number of studies have found that significant numbers of people face challenges to their sexual wellbeing as the result of their injury. Clinically, we know that our clients potentially face a broad range of issues. This can be around problems of sexual functioning; adaptation of sexual activity to compensate for physical or cognitive disabilities; adjustment in the context of a pre-existing relationship; fertility and contraception issues; as well as safer sex, just to name a few. Meeting such challenges can be even more daunting for people from LGBTQIA+ backgrounds in heteronormative rehabilitation service environments.
Many of the problems people face after a brain injury are treatable but only if we identify them.
- How can rehabilitation professionals facilitate a discussion about sexuality with their clients?
First by staying calm. This means maintaining an open body posture and speaking with an even tone of voice. Staff members can use a Very Normal Response to respond well to a client raising an issue of sexuality. V stands for validating the client (e.g., I can tell this is a concern for you, and it is important that you have been able to speak up about it). N stands for normalizing the concern (e.g., It is common for people to have sexual health concerns after an
injury). R stands for referral (e.g., I may not be able to help you with your concern, but I can find someone who can). This is the basic competence that all neurorehabilitation staff should be trained in, providing clients and/or their families with the “Permission” to raise sexual health concerns.
Staff who have more training or experience can engage with their clients at the levels of “Limited Information” or “Specific Suggestions”, linking people into information resources or providing specific suggestions to address client concerns.
“Intensive Therapy” is best delivered by staff who have had graduate training or equivalent experience in sexual health counseling or sexual health medicine.
Many of your readers will recognize that the four steps I have outlined reflect an application of the PLISSIT model, a stepped framework for addressing sexual health issues used widely across the health and human services sectors, to the field of neurorehabilitation. It is a useful model because staff can be trained to facilitate discussions commensurate with the level of their knowledge and skill.
Which staff might take the lead in these conversations? Sexuality is an interdisciplinary field. It will, therefore, depend on the nature of the clients’ sexual health concern – various staff can have a role to play including physicians, nursing, occupational therapy, physiotherapy, speech and language therapy, social work, psychology as well as attendant carers and other support workers.
The other challenge implicit in your question is moving from a reactive stance to a proactive stance. A reactive stance means that the topic of sexuality is only addressed if a client or their family raises the issue. Research over the past 3 decades suggests that this is the most common practice within neurorehabilitation.
A proactive stance would mean that staff in neurorehabilitation services takes more initiative in checking with clients whether they have any sexual health concerns.
- To date, your program “You and Me” has been the only intervention showing evidence of success to address sexuality concerns in individuals with traumatic brain injury (TBI). Why do you think there is a paucity of interventions in sexuality post-TBI and what be done to encourage more evidence-based interventions in this area?
Yes, it would be ideal if there were more choices both for clients and for staff, in terms of programs that target the promotion of positive sexual adjustment post-injury. The absence of research into interventions is puzzling, as it is not universal across all neurological groups. For example, randomized
controlled trials evaluating treatments for erectile dysfunction have been conducted in a number of neurologic groups including spinal cord injury, cerebral palsy, multiple sclerosis, and Parkinson’s disease. There has also been a trial evaluating a sex education program for stroke.
There is a need for champions who want to build a culture of clinical practice and research around addressing the sexual health concerns of people with brain injury. Centres which are able to run sustained programs of research, drawing upon international collaborations, are likely to be able to act as a focal point to encourage such developments. Partnering with local sexual health services is also an invaluable resource, as it enables the integration of expertise around sexual health and brain injury.
In the absence of substantive evidence, Griffith and Lemberg, in their ground-breaking book written in 1993, recommended that existing frontline interventions for the treatment of sexual health concerns for the general population be employed, and this principle still applies today.
- Why is research on the sexuality of adolescents and young adults with brain injury so scarce when compared with the same research in adults? What could be done to foster this much-needed research?
I want to be cautious here, as I have not worked in the field of paediatric brain injury, so it is more for others to speak about this. However, I was involved in a recent review of the ABI paediatric sexuality literature, covering children and adolescents up to 18 years of age. We found that the majority of the 28 papers identified in the review comprised case studies of precocious puberty, a rare medical complication of paediatric TBI.
As an outsider, it seems hard to understand that although sexuality is a key developmental task in adolescence, there is virtually nothing in the research literature about the experiences and challenges faced by teenagers with an acquired brain injury in negotiating this fundamental life transition through puberty and in developing a sexual identity.
There seems to be an absence of information in the research literature about a series of questions: are teenagers with ABI getting access to sex education? If so, is it pitched at a level they can process? Can they benefit from mainstream school programs? Are there additional needs not covered by mainstream programs that should be targeted? If so, how can these needs be addressed? And how can parents and schools be supported in their efforts to help children navigate their sexual development?
It could be an exciting area to research as so little work seems to have been done to date.
- Do you think emerging technologies will play a role in neurosexuality? What are the challenges that we should anticipate?
It is hard to predict the roles emerging technologies will play, however, there are many potential opportunities. Social media provide many more outlets for people with brain injury to connect with others, and this may provide a pathway to dating and building romantic relationships. We are starting to see some research undertaken in this area but it is still very new. YouTube has clips on a wide range of sexual health issues and this may be useful for staff seeking to engage with clients and/or their families around sexual health concerns. Smartphone prompts may help to remind people about contraception and help with other cognitive barriers that interfere with their sexual lives.
People may be able to purchase physically adapted aids from specialty suppliers more easily over the internet. Internet searches may also help identify health professionals able to assist with sexual health concerns. Furthermore, communication aids continue to become more accessible and can help people who have limited vocal ability to better express themselves. In addition, smart home devices (e.g., light controls, door locks) may enable people to have greater security and privacy in meeting their sexual needs.
However, technology also brings some challenges. The easy access to pornography can include content focused on children or sexual violence, with the possibility of people then getting caught up with the law. Clients with brain injury may be more vulnerable to scammers that they meet through social media sites who capitalize on their feelings of loneliness. Staff can also find it challenging to try to keep up with the latest technology developments, and so not fully appreciate both the opportunities and the risks for their clients. Despite these risks, technology has great potential to improve the sexual lives of people with brain injury.
- What is the future of neurosexuality?
The future is promising. There is a lot of goodwill among rehabilitation professionals in wanting to more effectively promote sexual wellbeing after neurodisability, but this needs to be translated into action. In bridging the gap between sexuality taught as part of university curricula and actual practice in neurorehabilitation services, staff training could be a key. We can then provide opportunities for clients and their families to access help as a normal part of their neuror
The groundswell of good quality descriptive studies documenting the sexual health challenges over the past decade also provides a strong foundation for future education and treatment trials. There has been a growing focus on women’s issues in relation to sexuality after a brain injury. This helps to better balance the predominant focus on male sexuality that has characterized the field to date. It will help neurorehabilitation services to better target the specific needs that women with brain injury face.
The first article systematically addressing the challenges addressed by people with LGBTQIA+ orientations who sustain an ABI has been published. This is an important development, as this has been an area of neurorehabilitation in which little work has been done and will hopefully act as a springboard for future work.
Finally, a closer collaboration with sexual health services and the field of sexology will strengthen future research efforts and also help improve practice in delivery services and support to people with brain injury. Together, it will be possible to facilitate the positive sexual adjustment of all clients with a brain injury.
Sander, A. M., Maestas, K. L., Pappadis, M. R., Sherer, M., Hammond, F. M., Hanks, R., & NIDRR Traumatic Brain Injury Model Systems Module Project on Sexuality after TBI. (2012).
Sexual functioning 1 year after traumatic brain injury: findings from a prospective traumatic brain injury model systems collaborative study.
Archives of Physical Medicine and Rehabilitation, 93(8), 1331-1337.
World Health Organisation (1996). Optimuum care of disabled people: Report of a WHO meeting, Turku, Finland. Geneva: Author.
About the Interviewer
Alexander Moreno, PhD, is a licensed Clinical Neuropsychologist/Psychologist member of the College of Psychologists of Quebec (Ordre des Psychologues du Québec, OPQ) in Canada and the College of Psychologists of Colombia (Colegio Colombiano de Psicólogos, COLPSIC). Currently, Dr. Moreno is an adjunct professor in the Department of Psychology at Université de Montréal and works as a Clinical Neuropsychologist/ Psychologist at Notre-Dame Hospital in Montreal (CIUSSS du Centre- Sud-de-l’Île-de-Montréal). For several years, he has been working in the areas of sexuality and neurodisability. He has authored numerous
peer-reviewed scientific and review articles in the areas of health psychology, neuropsychology, sexuality, and neurorehabilitation. Dr. Moreno leads a new area of research and practice known as neurosexuality, based on a transdisciplinary approach to sexuality in neurorehabilitation. As a researcher and clinician, he advocates for the inclusion of sexual rehabilitation in individuals with brain injuries and their families.