Moderate to severe traumatic brain injury can negatively impact intimacy, relationships, and sexual function through changes in physical, endocrine, cognitive, behavioural, and emotional function. Without intervention, diminished sexual functioning in individuals with MS-TBI will persist over time. Although most healthcare professionals agree that intimacy, relationships, and sexuality are significant concerns that should be addressed in rehabilitation, these concerns have not been typically discussed during rehabilitation and discharge planning compared to other care domains following a TBI. As a rehabilitation team, it is important to recognize a shared responsibility in addressing intimacy and sexuality. All rehabilitation team members should be generally knowledgeable of intimacy and sexuality issues post-TBI. In an integrative review of the literature, Deschênes and colleagues (2019) found that 52.9% of sources were in support of using the PLISSIT (Permission, Limited Information, Specific Suggestions, and Intensive Therapy) model to assist healthcare professionals in discussing sexuality with individuals with moderate to severe TBI.
Intimacy and sexuality should be consistently addressed within the TBI inpatient rehabilitation setting. To ensure this happens proactively, one or two rehabilitation professionals who are comfortable with and trained in discussing sexuality should be formally selected to provide resources and education to all individuals with TBI and their partners, if applicable.
The following are suggestions of tools and resources that can be used to support the implementation of the recommendations in this section. Healthcare professionals must respect the legal and normative regulations of the regulatory bodies, in particular with regards to scopes of practice and restricted/protected activities, as these may differ provincially.
Clinical Tools:
Patient and Family Resources:
Recommendations were developed addressing the following topics: 1) interprofessional team training, 2) early education on TBI effects on intimacy, relationships, and sexuality, 3) creating individualized interventions, 4) education, assessment and management of causes of sexual dysfunction, and 5) providing written materials and relationship coaching to persons with a TBI and their partners.
One-third to half of individuals with moderate to severe TBI report changes in sexual functioning (Ponsford, 2003). These changes can lead to social isolation, deterioration of marital relationships, diminished intimacy with their significant other (Gill et al., 2011) and affect the ability of a person with moderate to severe TBI to develop and maintain relationships (Moreno 2013). Even when relationships endure after TBI, studies show high relationship dissatisfaction/ low dyadic adjustment on a measure that includes items that evaluate intimacy and sexual relations (Kreutzer et al 2016). Further, a significant proportion of individuals with MS-TBI have reported decreases in the desire for sexual activity (Downing et al., 2018), arousal, frequency of intercourse (Simpson and Baguley, 2012), and a diminished sexual quality of life (Moreno et al., 2013).
As a rehabilitation team, it is important to recognize a shared responsibility in addressing intimacy and sexuality. All rehabilitation team members should be generally knowledgeable of intimacy and sexuality issues post-TBI. In an integrative review of the literature, Deschênes and colleagues (2019) found that 52.9% of sources were in support of using the PLISSIT (Permission, Limited Information, Specific Suggestions, and Intensive Therapy) model to assist healthcare professionals in discussing sexuality with individuals with moderate to severe TBI.
Written materials on sexuality, relationships and intimacy should provide education on the following topic areas: how moderate to severe TBI affects sexual functioning, causes of changes in sexual functioning post-moderate to severe TBI, how to improve sexual functioning after moderate to severe TBI, the importance of safe sex and how to discuss intimacy and sexuality with a healthcare professional (Sander 2010). All written materials should be provided in lay language and at the appropriate reading level (Sander 2010; Deschênes et al., 2019). Written materials on sexuality, relationships, and intimacy should be provided directly to the patient. However, in cases where an individual with MS-TBI has impairments in memory, processing speed, or cognitive communication, written materials can be provided to the spouse or parent (if applicable) to be referred to by the individual with MS-TBI when appropriate. Downing and Ponsford (2016) suggested providing individuals with moderate to severe TBI with resources such as Sexual Functioning and Satisfaction after Traumatic Brain Injury—an Education Manual by Sander, Kendall, Pappadis, Hammond, and Cyborski (2011), Intimacy, Sexuality and Sex after Brain Injury by Stejkal (2011). Deschênes and colleagues (2019) found that 23.5% of sources found Simpson’s You and Me sex education program and Aloni and Katz’s extensive treatment program for sexual difficulties after TBI to be useful resources in addressing sexuality following TBI (Moreno et al., 2015; Aloni and Katz 2003; Moreno et al., 2013).
Further, individuals with moderate to severe TBI frequently have difficulty with social cognition and behaviours that are fundamental to building emotional and intimate connections with others. These issues include but are not limited to impaired recognition of emotions in self and others, blunted affect, diminished empathy, and poor social communication skills. While these problems can have a negative pact on all types of relationships (e.g., family, friends), they are important barriers that can make it particularly difficult for the person with TBI to develop romantic relationships with others. To increase the likelihood of a person with TBI establishing new romantic relationships, these social cognition skills and behaviours should be evaluated and addressed as part of rehabilitation. Therapists should teach their patients how to use perspective-taking to consider other peoples’ points of view, how to demonstrate care, concern and emotional support for others’ needs and feelings, as well as how to identify and share their own emotions and needs. Patients should be taught components of verbal and nonverbal social cognitive-communication, both expression (e.g., communicate their thoughts and feelings with kindness; displays of affection) and reception (e.g., respectful listening; inferring others’ thoughts and emotions). If patients have problems with emotional or behavioural dysregulation, or issues with poor hygiene, judgement, disinhibition or impulsiveness, this could impact one’s success and/ or safety when establishing new relationships and therefore also be addressed as part of treatment.
REFERENCES
Aloni, R., & Katz, S. Sexual difficulties after traumatic brain injury and ways to deal with it. Charles C Thomas Publisher; 2003.
Downing, M., & Ponsford, J. (2018). Sexuality in individuals with traumatic brain injury and their partners. Neuropsychological rehabilitation, 28(6), 1028-1037.
Gill, C. J., Sander, A. M., Robins, N., Mazzei, D., & Struchen, M. A. (2011). Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners. The Journal of head trauma rehabilitation, 26(1), 56-68.
Marier Deschênes, P., Lamontagne, M-E., Gagnon, M-P., & Moreno, J. A. (2019). Talking about sexuality in the context of rehabilitation following traumatic brain injury: An integrative review of operational aspects. Sexuality and Disability, 37, 297-314.
Moreno, J. A., Arango Lasprilla, J. C., Gan C., & McKerral, M. (2013). Sexuality after traumatic brain injury: a critical review. NeuroRehabilitation, 32(1), 69-85.
Moreno, J. A., & das Nair, R. (2015). Translating knowledge into practice: content analysis of online resources about sexual difficulties for individuals with traumatic brain injury. Sexual and Relationship Therapy, 30(4), 448-461.
Ponsford, J. (2003). Sexual changes associated with traumatic brain injury. Neuropsychol Rehabil, 13(1-2), 275-89.
Sander, A. (2010). Integrating sexuality into traumatic brain injury rehabilitation. Brain Injury Professional, 8-12.
Sander, A. M., Maestas K. L., Pappadis M. R., Hammond F. M., Hanks R. A., & NIDILRR Traumatic Brain Injury Model Systems Module Project on Sexuality After TBI. (2016). Multicenter Study of Sexual Functioning in Spouses/Partners of Persons With Traumatic Brain Injury. Arch Phys Med Rehabil, 97(5), 753-9.
Simpson, G. K., & Baguley, I. J. (2012). Prevalence, correlates, mechanisms, and treatment of sexual health problems after traumatic brain injury: A scoping review. Critical Reviews™ in Physical and Rehabilitation Medicine, 24(1-2).
Designated team members: Interprofessional teams should identify members of the team who will always initiate a discussion about intimacy and sexuality with the patient and their partner. The team member should be appropriately trained to initiate this discussion.
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Interprofessional training: All interprofessional team members should have a basic understanding and training on how brain injury can affect sexuality/intimacy. Clinicians should be provided with key phrases they can use to respond to patients and partners.
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Initiating conversation: If the patient/partner does not initiate a discussion about sexuality, then the clinician should seek permission to discuss sexuality and intimacy with the partner present, as appropriate, taking into consideration potential cultural factors.
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Individualizing intervention and education: Intervention and education about sexuality in individuals with traumatic brain injury should consider cultural identity, gender, age, sex, sexual orientation and gender identity.
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Written educational materials: Patients and their partners should be provided with written materials, at a minimum, regarding sexuality, relationships, and intimacy early during inpatient and/or outpatient rehabilitation and should provide patients with the opportunity to discuss and ask questions when they feel ready.
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For the person with TBI who is not currently in a romantic relationship but would like to be, provide training of skills that are likely to enhance their chances for success and safety.
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On follow-up with the person with TBI who is in a relationship, clinicians should explore if there has been a change in intimacy or sexual function and specifically inquire about changes in libido.
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If the person with TBI endorses changes in libido, then the clinicians should complete a medical workup including laboratory and endocrine workup to rule out a medical cause of decreased libido and provide advice regarding other causes of sexual dysfunction.
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If the person with TBI does not endorse changes in libido but does endorse strains in their existing relationship with their partner, they should be referred for individual and couples counselling.
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If the person with TBI and their partner do not endorse severe strain or changes in libido, they should be considered for the Couples CARE (Caring and Relating with Empathy) program if they meet the inclusion criteria.
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