Sexual Activity & Intimacy: Background

Many healthcare providers consider sexual health to be integral for identity, personhood, and psychological well-being, yet few of them address it. Meanwhile, many healthcare service recipients perceive it as important and want information (Couldrick et al., 2010).

Sexual health is defined as "a state of physical, emotional, mental and social well-being in relation to sexuality" (World Health Organization [WHO], 2015, p. 5). An opportunity for safe and pleasurable sexual experiences free of discrimination, violence, or coercion in addition to a respectful and positive approach to sexual relationships and sexuality is required. Sexual health also includes the absence of dysfunction, infirmity, and disease (WHO, 2015). Overall, sexual health is considered paramount to the emotional health, physical health, and overall well-being of an individual and is dependant on an individual having the following: an environment that promotes and affirms sexual health, extensive education regarding sexuality, education regarding the risks and consequences of sexual activity, accessibility to quality sexual health care (WHO, 2015).

Sexual activity is the manner in which individuals experience and express their sexuality. Sexuality includes sexual orientation, gender identities, roles, sexual practices, intimacy, pleasure, eroticism, and reproduction (WHO, 2015). It can be expressed and experienced in a variety of ways such as "thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices, roles, and relationships" (WHO, 2015, p.5). "The interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors" are influential on an individual's sexuality (WHO, 2015, p.5)

Sexual dysfunction, injustices, and problems related to sexual activity are common for individuals with disabilities, chronic disease, and acute injury (Basson et al., 2010; Verschuren et al., 2013; Couldrick et al., 2010). Below is a list of common conditions with specific considerations that may affect sexual activity and expression. 

Common Conditions with Specific Considerations 

Amputations  

Over 90% of all limb amputations in Western Societies are either directly or indirectly the result of diabetes mellitus and/or peripheral vascular disease (PVD) and these conditions can directly impact the physiological processes involved in sexual functioning (Bowker & Michael as cited in Woods et al., 2016). Individuals who have experienced limb amputation also experience psychological issues such as poor body image, anxiety, and depression at a much higher rate when compared to the general population (Desmond et al., 2009; Hawamedeh et al., 2008; Singh et al., 2009). This higher rate of incidence is likely contributed to the multiple psychosocial challenges, such as pain, disruption of participation in valued activities, changes in employment, changes in relationships, and body image issues that occur after an amputation (Desmond et al., 2009; Rybarczyk et al., 2008). 

Some individuals who have experienced an amputation may also have a reduction in sexual desire, challenges with arousal, and difficulty achieving orgasm (Geertzen et al., 2009). Some individuals are also more vulnerable to "spectate" during sexual activity, which is when their attention is focused negatively on themself rather than sexual stimuli, as a result of losing the sense of body wholeness which can negatively impact their sexual satisfaction (Gender, 2010-Murray, C. D. (2009). Their partner's acceptance level of the amputation and their partner's roles, such as one of a caregiver, also have the potential to negatively impact sexual satisfaction (Verschuren et al, 2013).

Phantom limb pain, difficulties with positioning, challenges with balance and movement, and pain, in general, are potentially problematic factors faced by individuals who have an amputation (Shell & Miller as cited in Em et al., 2019). In addition, individuals may encounter obstacles in relation to masturbating or caressing their partner(s). Moreover, it is important to note that not all amputations lead to negative outcomes with sexual activity. Some individuals may feel more sexual if an amputation helped relieve pain or helped them get out of a wheelchair.

Cerebral Vascular Accident 

Cerebral vascular accidents (CVA), or strokes, are the primary cause of long-term disability and the third leading cause of death throughout the "developed world" (Ritzel et al., 2013). Individuals who have experienced a CVA often report facing several psychosocial and physical barriers to intimacy and sexual activity (Kniepmann & Kerr, 2018). 

Anxiety and depression are common psychological disorders that individuals face post-CVA which have been shown to correlate with sexual dysfunction, lower levels of sexual satisfaction, and decreased quality of life (Rosenbaum et al., 2014; Seymour & Wolf, 2014). After a CVA, an individual's attitudes and perceptions toward intimacy and sexual activity commonly undergo dramatic changes. Reports of low self-esteem leading to feelings of undesirability and self-consciousness are prevalent (Korpelainen et al., 1999; Mellor et al., 2013; Stein et al., 2013). Many also fear that sexual activity will elicit a subsequent CVA and decide to significantly reduce or discontinue participation as a result (Mellor et al., 2013, Rosenbaum et al., 2014; Stein et al., 2013).

Communication between the affected individual and their partner has been found to be a significant indicator for sexual functioning, but many studies have identified a lack of communication between partners is a common experience post-CVA (Harris et al., 2011, Kitzmuller & Ervik, 2015; Korpelainen et al., 1999). In fact, it has been found to be more influential than physical limitations (Rosenbaum et al., 2014). Aphasia can also impact the affected individual's ability to express emotions and feelings which can exacerbate their partner's feelings of loneliness and frustration (Kitzmuller & Ervik, 2015). The assumption of a caretaker role by a partner can also have a powerful impact on the dynamics of the relationship

Commonplace physical limitations include pain, limitations in mobility, spasticity, fatigue, weakness, and changes in sensation. (Rosenbaum et al., 2014, Stein et al., 2013, Rose & Hughes, 2018). A reduced libido, erectile dysfunction, reduced vaginal secretion, and difficulty achieving orgasm are typical (Korpelainen et al., 1999; Mellor et al., 2013, Rosenbaum et al., 2014, Stein et al., 2013). Comorbidities, such as diabetes and heart disease, and their subsequent medications, such as blood pressure medications, are also influential on intimacy and sexual activity (Korpelainen et al., 1999; Mellor et al., 2013). Birth control medication is also commonly deemed inappropriate after a stroke due to clotting concerns, which may indicate a need for skill-building in relation to sexual education to adapt to new methodologies of contraception.

Where a CVA takes place is an important consideration. For example, it took place in the frontal lobe, there is a higher likelihood of the affected individual exhibiting sexually inappropriate behavior. Whereas if it takes place in the temporal lobe, there is an increased chance of decreased sexual desire and difficulty having an erection and/or achieving orgasm. A CVA in the left brain will likely result in depressive symptoms which can greatly affect sexual desire.

Intellectual Disability 

Individuals with intellectual disability (ID) have historically been labeled as 'eternal children' and perceived as asexual, victims of abuse, or perpetrators of abuse in terms of sexual participation (McDaniels & Fleming, 2016; Kramers-Olen, 2016; Ditchman et al., 2017; Bane et al. 2012; Fitzgerald & Withers 2013). Efforts to aid individuals with ID to have more normal life experiences has been increasing, however; the support has generally focused on areas such as recreation, employment, and their living environment whereas sexual participation continues to be neglected (Gilmore & Chambers, 2010). Stereotypes, misconceptions, and prejudices upheld by family members, healthcare workers, and caregivers still surround the topic of sexual expression for individuals with ID (Kramers-Olen, 2016). Many individuals with intellectual disabilities are unable to drive and; therefore, have challenges with community mobility and privacy of where they choose to spend their time. In many instances, it is likely these factors present as barriers for this population to participate in intimate relationships and sexual expression. 

Multiple Sclerosis 

Approximately 1 million individuals in the U.S. are living with multiple sclerosis (MS) (National Multiple Sclerosis Society, 2019). MS is a progressive, chronic neurological disease in which an individual's immune system mistakenly attacks myelin (the protective coating around nerve fibers) in the central nervous system (CNS) (includes the spinal cord, brain, optic nerves) As a result, communication within the CNS is disrupted, altered, or stopped (National Multiple Sclerosis Society, n.d.a.). MS has an unknown etiology, but scientists generally believe the risk of developing MS is contributed to a combination of genetic and environmental factors (National Multiple Sclerosis Society, n.d.a.). Four disease courses have been identified: relapsing-remitting, clinically isolated syndrome, primary progressive, and secondary progressive (National Multiple Sclerosis Society, n.d.d.). 

Symptoms and progression vary from each individual because it is highly dependent on where the damage has taken place (National Multiple Sclerosis Society, n.d.c.). However, common physical challenges include gait difficulties, spasticity, weakness, numbness, tingling, fatigue, vision problems, dizziness/vertigo, bladder problems, pain, itching, and bowel dysfunction (National Multiple Sclerosis Society, n.d.b.). Cognitive changes, emotional regulation difficulties, and depression are also common symptoms for individuals with MS (National Multiple Sclerosis Society, n.d.b.).  Additional psychological and sociocultural aspects include negative changes in mood, poor self-image leading to feelings of attractiveness, role changes, dependency, communication challenges, feelings of guilt, and a fear of rejection, isolation, or abandonment (Foley & Sanders as cited in Lew-Starowicz & Rola, 2013).

Sexual dysfunction is another prevalent concern for this population; however, it often goes unreported and is rarely addressed by healthcare professionals (Ashtari et al., 2014). The aforementioned symptoms have the capacity to impact sexual participation and intimacy. For example, difficulty with lubrication and the ability to orgasm are correlated with pelvic floor weakness, and bladder and bowel dysfunction (Lew-Starowicz & Rola, 2013). Decreased physical arousal and anorgasmia may result from lesions within the sacral segments of the spinal cord (Lew-Starowicz & Rola, 2013). Decreased desire, poor coordination, impaired mobility, fatigue, numbness, pain, and spasticity have also been found to affect sexual satisfaction (Gruenwald et al., 2007; Lew-Starowicz & Rola, 2014; Sipski et al., 2001; Vardi et al., 2000). 

Parkinson's Disease 

Parkinson's disease is a progressive nervous system disorder that is associated with the degeneration of dopaminergic neurons in the substantia nigra resulting in movement and non-movement disorders with no known cause (Sakakibara et al., 2011; Parkinson's Foundation, n.d.). Motor disorders can consist of tremors, muscle rigidity, bradykinesia, poor fine motor control, dyskinesia, gait and balance problems, and hypomimia (low changeability of facial expressions) (Bronner & Vodušek, 2011; Parkinson's Foundation, n.d). Nonmotor disorders of Parkinson's disease include neuropsychiatric disorders, sensory dysfunction, constipation, cognitive impairment, sleep disorders, and autonomic disorders (Chaudhuri et al., 2006).

Sexual dysfunction is common and underrecognized in individuals who have Parkinson's disease (Bronner & Vodušek , 2011). Sexual dysfunction has been shown to significantly affect their and their partner's quality of life. Concerns with decreased libido and low sexual satisfaction are prevalent. The aforementioned motor difficulties in addition to hypersalivation and sweating have also been found to interfere with sexual functioning. Males have reported facing challenges with erectile dysfunction, problems with ejaculation, and hypersexuality (Bronner & Vodušek, 2011). This makes sense because dopamine has a direct role in the ability to have an erection, desire level, and reward-seeking behavior and Parkinson's disease affects the dopamine levels in individuals (Wylie & Kenney, 2009). Often dopamine replacement therapy is used as management for the condition which can lead to the hypersexuality side-effect (Wylie & Kenney, 2009). Women have expressed difficulty with lubrication and involuntary urination during sexual activity (Bronner & Vodušek, 2011). The involuntary urination may be attributed to an altered dopamine-basal ganglia circuit within the brain's pathology (Sakakibara et al., 2011). Research supports that those with an advanced progression of the disease still demonstrate an interest in participating in sexual activity and should, therefore, be addressed by healthcare professionals at any point in progression (Wylie & Kenney, 2009).

Rheumatoid Arthritis 

Rheumatoid arthritis (RA) is an autoimmune disease characterized by chronic synovial inflammation with an unknown etiology (Tristano, 2014; Carmona et al., 2010). Cartilage damage, changes in joint integrity, and bone erosion commonly result from the synovial inflammation (Coskun et al., 2013). At least 1% of the world's population has RA and 1.3 million of them are accounted for in the U.S. alone (Rheumatoid Arthritis Support Network, 2018). Women are also three times more likely to develop the condition than men (Rheumatoid Arthritis Support Network, 2018). 

RA has the potential to impact several areas of an individual's life such as social, psychological, economic, and sexual resulting in varying degrees of disability (Tristano, 2014). Fatigue, pain, stiffness, hormonal imbalance, functional impairment, reduced libido, depression, anxiety, negative body image, and drug treatment have been identified as barriers to sexual functioning in this population (Tristano, 2014).  

Traumatic Brain Injury 

A traumatic brain injury (TBI), is the result of an external forced inflicting damage on the brain, skull, and/or the surrounding frameworks (Latella et al., 2018). When an individual experiences a TBI, they may report physiological, psychosocial, and cognitive differences. These changes have the potential to significantly impact various factors within the individual's life, including sexual functioning (Giacino et al. as cited in Latella et al., 2018). 

Common physical difficulties that can affect sex include problems with balance and dizziness, fatigue, hormonal problems, changes in sensations, incontinence, weakness, paralysis, and limited mobility (Headway - The Brain Injury Association, 2017). Cognitively, an individual may experience memory problems, lack of motivation, reduction in initiative, poor insight,  prosopagnosia, and difficulty with decision making. Difficulty with communication regarding emotions and needs with their partner, disregard for their partner's needs, poor self-esteem, and depressive moods are also commonly reported by this population (Ciurli et al., 2011; Headway - The Brain Injury Association, 2017). Emotional liability, depression, and impaired empathy can present emotional challenges. Furthermore, inappropriate sexual behavior has reported as a barrier to sexual functioning (Headway - The Brain Injury Association, 2017; Moreno et al., 2013). Decreased libido, decreased arousal, inability to climax, reduced frequency of special activity (Ciurli et al., 2011), erectile dysfunction, ejaculation difficulties (Ponsford et al. as cited in Latella et al., 2018), reduced vaginal lubrication, and pain (Hibbard et al. as cited in Latella et al., 2018) have been reported as sexual dysfunction outcomes of a TBI. Individuals may experience side effects from medications that also contribute to sexual dysfunction. 

The location in which the TBI occurs can provide insight into likely challenges an individual may face (Headway - The Brain Injury Association, 2017):

Frontal lobe

  • Inappropriate sexual behavior
  • Initiating sexual activity 
  • Motivation
  • Experiencing pleasurable and sexual sensations
  • Personality changes 
  • Attention and concentration 

Temporal lobe

  • Hypersexuality
  • Hyposexuality
  • Development of paraphilias
  • Interpreting other people's emotions and body language

Parietal lobe 

  • Unpleasant heightened sexual arousal or sensations as a result of seizures

Hypothalamus/Pituitary gland 

  • Hormonal changes affecting sex drive (increase or decrease)

Amygdala 

  • Emotional changes - may affect sexual feelings and orgasm sensations 
  • Changes with sex drive (increase or decrease)