Medical Problems and Sexual Functioning (Cardiovascular disease, Spinal Cord Injuries, and Intellectual disabilities)


Cardiovascular disease
A range of chronic conditions affecting the heart and vascular system (veins, arteries, etc.):
  • Blood vessel disease, arrhytmias, congenital heart defects, Coronary artery disease, etc.

Generally refers to conditions that involve narrowed or blocked blood vessels that can lead to angina, heart attack, stroke. The process that leads to narrowed or blocked blood vessels is known as atherosclerosis, where plaque builds up in the arteries and veins inhibiting blood flow to and from the heart, the brain, liver, and even genitalia.
  • Angina refers to the feeling of chest tightness experienced by many individuals with CVD

external image Cardiovascular-Disease.jpg

Symptoms:
  • Men-Chest pain
  • Women-shortness of breath, nausea, fatigue
  • Pain/numbness
  • Fluttering in chest
  • Dizziness
  • Fatigue

Prevalence and Etiology
About 80 million Americans have CVD (WebMD)
  • Number one killer of both men and women
Etiology/Risk factors for CVD (all of which can affect sexual desire, arousal, and performance):
  • Atherosclerosis
  • Poor diet
  • Lack of exercise
  • Smoking
  • Family history/genetics
  • Age
  • Sex (men more likely)
  • ED

Influence on sexuality
Many patients often face questions such as "Is it safe to have sex at all with this disease?" (heart.org):
  • According to the AHA (American Heart Association), sex is very safe; however, patients should abstain from sex until their CVD has stabilized through rehab and medications
  • Patients also approach sex fearful of having another cardiovascular event, but research shows this is very unlikely due to the fact that sex typically does not last long enough to cause such an event. (Bispo & de Barros, 2013)
  • Partners also face similar questions, postponing sex even when it is safe to engage in again (heart.org)
    • Advice: "Don't be shy about starting a conversation with your doctor about heart disease and your sex life"

Decrease blood flow to genitalia can lead to stronger likelihood of decreases in desire, but mainly problems with arousal:
  • Women-Lack of lubrication
  • Men-Problems getting/maintaining an erection
Problems with arousal may lead to potential decreases in the desire to have sex

Influence on sexuality following a CV event:
  • Increased risk for depression and anxiety as a result of heart attack, both of which have been found to affect desire/arousal
    • Antidepressants also shown to affect desire/arousal and even ability to reach orgasm
  • Doctors advise patients to wait at least 2 weeks after a heart attack before resuming in sexual activities (NLM)

Influence on partner sexuality:
  • Partners may be afraid to have sex sharing similar concerns of another heart attack (heart.org)
    • Concerns may lead to a loss of interest in sex
  • Partners may have opposing views towards treatment of sexual dysfunctions related to CVD leading to relationship conflict (WebMD)
    • They don't always associate the problem as having a biological base
    • Example: A husband is with CVD is experiencing trouble getting and maintaining an erection. To treat the sexual dysfunction the husband takes ED medication, which his wife does not approve of as she believes his ED is related to him not being attracted to her anymore. The husband is very attracted to his wife and wants to have sex, however, due to his CVD, blood flow to his penis is limited making it hard to get and maintain an erection. The cause of the dysfunction is biological, but the wife views it as psychological, causing problems in the marriage.
  • Partners may also use CVD and CV events as an excuse to avoid having sex for their own benefit (WebMD)
    • Desire issues
    • Attraction issues
    • Relationship problems

CVD and Erectile Dysfunction:
  • Research has found the the diagnosis of ED can be a warning sign for CVD (Sauvaget & Guitteny, 2012)
  • Conversely, CVD is also a risk factor for ED
  • The tiny blood vessels that bring blood to the penis clog quickly; the penis acts as a red flag for CVD
    • Generally 3 years between the diagnosis of ED and CVD

external image FITRX-ED-CARDIOVASCULAR-DISEASE.jpg

Treatment
  • CVD medications (NLM)
    • Beta blockers for irregular heart beat (arrhythmia)
      • Can cause ED, but patients are able to use ED drugs with beta blockers safely
    • ACE Inhibitors for high blood pressure
      • Not very likely to be the cause of ED
    • Diuretics for blood pressure
      • Have been found to affect desire in both men and women
    • Nitrates for angina
      • Patients must be extremely careful taking these drugs with ED medication
      • Avoid use of nitrates between 24 and 48 hours of taking ED medication
  • ED treatment (MayoClinic)
    • Medication
      • Viagra, Cialis, etc.
    • Injections
      • 5-10 minutes before intercourse
    • Vacuum-erection devices
      • Draw blood flow to the penis; their is also a female device used for a similar purpose
    • Surgery
  • Cardiovascular rehab (MayoClinic)
    • Moderate exercise
    • Support groups
    • Nutrition advice
  • Therapy (Gunzer, Kiston, Harms & Berner, 2009)
    • Address issues related to depression, anxiety, or fear of being sexually active again
      • Addressing potential relationship problems related to sex and/or other areas can be very beneficial to a client/patient's health
  • Consultation-Liaison Psychiatry


Patient need to knows, according to the AHA (heart.org)
  • Ask your doctor to evaluate you before resuming sexual activity
  • If you've had heart failure or a heart attack, cardiac rehab and regular physical activity can reduce the risk of complications related to sexual activity
  • Check with a doctor to make sure sexual dysfunction isn't CVD related
  • Don't skip on medications that could improve CVD if you think it could impact sex; your heart comes first
  • Drugs to treat ED, as a result of CVD,are generally safe
    • Shouldn't be used when receiving nitrate therapy for Angina due to Coronary artery disease
    • Do not take nitrates within 24-48 hours of using a drug treating erectile dysfunction
      • Can lead to a severe and sudden drop in blood pressure
  • Women: If postmenopausal & being treated for CVD, it is generally safe to use estrogen treatment for painful intercourse

external image American-Heart-Association-new-logo-480x230.jpg

Research:



References:
http://www.heart.org/HEARTORG/Conditions/More/MyHeartandStrokeNews/Sex-and-Heart-Disease_UCM_436414_Article.jsp

http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000540.htm

http://www.webmd.com/heart-disease/features/is-there-sex-after-heart-disease

http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056

Bispo, G. S., de, L. L., & de Barros, Alba L. B. L. (2013). Cardiovascular changes resulting from sexual activity and sexual dysfunction after myocardial infarction: Integrative review. Journal of Clinical Nursing, 22(23-24), 3522-3531.

Corona, G., Monami, M., Boddi, V., Cameron-Smith, M., Lotti, F., de Vita, G., . . . Maggi, M. (2010). Male sexuality and cardiovascular risk. A cohort study in patients with erectile dysfunction. Journal of Sexual Medicine, 7(5), 1918-1927.

d’Eath, M., Byrne, M., Doherty, S., McGee, H., & Murphy, A. W. (2013). The cardiac health and assessment of relationship management and sexuality study: A qualitative inquiry of patient, general practitioner, and cardiac rehabilitation staff views on sexual assessment and counseling for cardiac patients. Journal of Cardiovascular Nursing, 28(2), E1-E13.

Günzler, C., Kriston, L., Harms, A., & Berner, M. M. (2009). Association of sexual functioning and quality of partnership in patients in cardiovascular rehabilitation—A gender perspective. United Kingdom: Wiley-Blackwell Publishing Ltd.

Jackson, G. (2009). Sexual response in cardiovascular disease. Journal of Sex Research, 46(2-3), 233-236.

Sauvaget, A., & Guitteny, M. (2012). The consultation-liaison psychiatry, an effective process between heart and sexuality. Sexologies: European Journal of Sexology and Sexual Health / Revue Européenne De Sexologie Et De Santé Sexuelle, 21(3), 109-112.





People with Disabilities (PWD) and Sexuality
Spinal cord injuries (SCI) and Paralyses:
  • Prevalence
    • In the U.S., approximately 1.9% or 5,596,000 people have some form of paralysis
      • .4% or 1,275,000 due to SCI
    • 7% of foundation survey respondents were paralyzed during military service
    • Average age of paralyzation: 52; SCI: 48
    • 66.5% of the impacted population are between the ages of 30 and 60
SCI.jpeg.png SCI2.jpg.png
(Source:http://www.christopherreeve.org/site/Paralysis_Facts_figures.htm)

The Myth of Asexuality
"Socially I have been treated like anything but a woman...as a child, a disease, an object of pity, or a supergimp. I am seen as a wheelchair first and a person second" (Stohl as cited in Milligan & Neufeldt, 2001, p. 93)

Ableist mindset:
  • Internalized society myth that PWD loss of capabilities and attractiveness society's narrow definition mean no sexuality
  • Fed by pop culture
  • Non-disabled perceive taboo to have sexual relationships with PWD
  • Even researchers and clinicians unknowingly have ableist mindset
  • No mention of PWD research prior to 1970

Disability Positive Mindset:
  • Advocates for PWD sexual rights
  • Internet helps overcome physical limitations
  • Advocates for sexual education and consoling but gaps remain
  • Dr. Tepper leading the way to train health care providers
  • View PWD as minority cultural experience

"It seems PWD must not only deal with issues of handicap in their day-to-day lives, but the burden to resist internalizing prejudicial societal attitudes and beliefs, develops a positive sense of self, and educate others about their experience, will continue to fall primarily on their shoulders as well." (Milligan & Neufeldt, 2001, p. 105)

More myths:
  • PWD can't have "real" sex
  • PWD are not sexually attractive
  • PWD are oversexed
  • Sex must be spontaneous and/or have a set time
  • Sex means intercourse and is the goal of sexual activity
  • Sex performance equals love
  • Masturbation is sinful

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Assessment:
  • Pre-disabilty relationship
    • Intimacy, anger, communication, coping skills
  • Catastrophic injury or illness causes compression in relationship
  • Premorbid sexual attitudes and beliefs may be source
  • Sexual interest/activity especially in regard to mobility
  • Sensation in body and genital area

ADDRESSING-Helps develop complete PWD identity profile
  • A=Age
  • D=Disability (Developmental)
  • D=Disability (Acquired)
  • R=Religion
  • E=Ethnicity
  • S=Socioeconomic status
  • S=Sexual orientation
  • I=Indigenous heritage
  • N=National origin
  • G=Gender

The Physical Disability Sexual and Body Esteem (PDSBE) scale is also often used for assessment
  • .80 internal consistency; .78 test-restest


Interventions:
PLISSIT sex therapy model:
  • P=Permission to be sexual
  • LI=Giving limited information
  • SS=Giving specific suggestions
  • IT=Intensive therapy

Disability Affirmative Therapy (DAT):
  • Recognizes social barriers to sexuality
  • Takes into account adjustment variation to disability
  • Involves medical and personal coping strategies
  • Encourages creativity, flexibility, positive goal setting
  • Often used in conjunction with CBT and relaxation techniques

Positive future therapeutic applications include Third Wave Cognitive Behavioral Therapy (TWCBT)
  • Acceptance and Commitment Therapy (ACT)

Recommended Videos:
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Dr. Spine speaking about autonomic dysreflexia:
https://youtu.be/pNvEpmUcDss

Dr. Tepper:
Sexual positions for men with spinal cord injuries
https://youtu.be/HatRXFL1TxQ

Sexual positions for women with spinal cord injuries
https://youtu.be/984jVQfKv2w


Websites:
www.christopherreevefoundation.org : One stop shopping for everything about paralysis. Check out excellent disability positive video series

www.pva.org: Paralyzed Veterans of America website has free download resource: Sexuality and Reproductive Health in Adults with Spinal Cord Injury: What You Should Know

www.newmobility.com: a digital magazine for active wheel chair users

References:
Anderson, K. D., Borisoff, J. F., Johnson, R. D., Stiens, S. A., & Elliott, S. L. (2006). The impact of spinal cord injury on sexual function: Concerns of the general population. Spinal Cord.

Cameron, R. P., Mona, L. R., Syme, M. L., Cordes, C. C., Fraley, S. S., Chen, S. S., . . . Lemos, L. (2011). Sexuality among wounded veterans of Operation Enduring Freedom (OEF), Operation Iraqi Freedom (OIF), and Operation New Dawn (OND): Implications for rehabilitation psychologists. Rehabilitation Psychology, 56(4), 289-301.

Farrow, J. (1990). Sexuality Counseling with Clients who have Spinal Cord Injuries. Rehabilitation Counseling, 33(3), 251-259

Kedde, H., H. B. M. Van De Wiel, Schultz, W. C., Vanwesenbeek, W. M., & Bender, J. L. (2010). Efficacy of Sexological Healthcare for People With Chronic Diseases and Physical Disabilities. Journal of Sex & Marital Therapy, 36(3), 282-294.

Leibowitz, R. Q., & Stanton, A. L. (2007). Sexuality after spinal cord injury: A conceptual model based on women's narratives. Rehabilitation Psychology, 52(1), 44-55.

Lemon, M. A. (1993). Sexual counseling and spinal cord injury. Sexuality and Disability, 11(1), 73-97.

McCabe, M. P., Taleporos, B. A., & Dip, G. (n.d.). Sexual Esteem, Sexual Satisfaction and Sexual Behavior Among People with Physical Disability. Archives of Sexual Behavior.

Milligan, M., & Neufeldt, A. H. (2001). Myth of Asexuality: A Survey of Social and Empirical Evidence. Sexuality and Disability, 19(2), 91-109.

Mona, L. R., Krause, J. S., Norris, F. H., Cameron, R. P., Kalichman, S. C., & Lesondak, L. M. (2000). Sexual expression following spinal cord injury. NeuroRehabilitation, 15, 121-131. Retrieved March 16, 2015.

Reitz, A., Tobe, V., Knapp, P. A., & Schurch, B. (2004). Impact of spinal cord injury on sexual health and quality of life. International Journal of Impotence Research, 16(2), 167-174.


Intellectual Disabilities:

“Sexuality is an integral part of the personality of everyone: man, woman, and child. It is a basic need and an aspect of being human that cannot be separated from other aspects of human life. Sexuality is not synonymous with sexual intercourse (and it) influences thoughts, feelings, actions, and interactions and thereby our mental and physical health” (WHO, 1975)

Monica and David pic.jpg

A disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills.


DSM-V shift from "mental retardation" to "intellectual disability"


3 requirements:
  • IQ below 75
  • limitations in adaptive behaviors (ability to adapt and carry on everyday life activities like self-care, socializing and communication)
  • onset occurs before age 18

Characteristics:
  • Impaired social abilities (empathy, social judgment, interpersonal communication, skills, ability to make and manage friendships
  • impaired memory recall
  • poor task and skill generalization
  • tendency for low motivation/learned helplessness

Disorders included:
  • Down Syndrome
  • Fragile X Syndrome
  • Fetal Alcohol Spectrum Disorder
  • Prader-Willi Syndrome (genetic disorder that results in constant hunger, intellectual impairment, and behavioral problems)
  • Angelman Syndrome (genetic disorder that affects the nervous system and results in intellectual impairment, speech impairment, problems with movement and epilepsy)

Prevalence:
  • Intellectual disabilities are the most common type of developmental disability
  • 2-3% of U.S. Population (W.H.O.)

Myths regarding people with intellectual disabilities and sexuality:
  • Asexual
  • Cannot control their sexuality
  • Too immature for sex education
  • Incapable of making informed decisions regarding sex

Sexuality perceptions of people with intellectual disabilities:
  • sexual beings who are interested in the topic of sex
  • parents/caregivers limit their sexual expression and exert a lot of control over their views on whether or not their children should have relationships
  • lack of exposure results in immaturity around sex (giggling, avoiding, anxious feelings)

Role of parents/caregivers in sex ed:
  • should be primary sex educators
  • acknowledge that child has a sexual interest
  • understand own values and beliefs before talking with child
  • acknowledge personal privacy boundaries
  • start before they hit puberty
  • use accurate language for body parts and bodily functions
  • use photos and other visual materials
  • take advantage of teachable moments (tv shows, pregnant neighbor)
  • be willing to repeat information over time
*Difficulty or concern in any of these areas can be brought to a clinician to be discussed and worked through

Why parents/caregivers may be concerned with providing sex ed:
  • talking about it will encourage sexual experimentation
  • afraid they won't know how to answer their questions
  • the child may know too much or too little and won't know where to begin
  • heightened risk for sexual abuse
  • sexual offence

Guidelines for Professional Sex Educators and Clinicians:
  • learn as much as possible about the disability of the client
  • ask what they already know about sex
  • assume that they know more than they can express
  • use accurate language
  • normalize
  • if they have not received any or developmentally appropriate sex education, it is common to be under the impression that any sexual expression is unacceptable
  • discuss social etiquette regarding sex
  • discuss skills to prevent sexual abuse and encourage report for unwanted sexual activity

Preventing Sexual Abuse:
  • Define Sexual Abuse
    • forced sexual activity
    • exposure
    • communicating in a sexual manner by phone or internet
    • crime
  • Teach the facts: people with intellectual disabilities are more likely to be targeted for sexual abuse
  • Minimize the opportunity: abusers sometimes become friendly with them and their families, and look for alone time once trust is earned. Monitor internet activity and inform them of risky sites
  • Talk about it: often feel shame, or fear of harm from abuser if they disclose
  • Recognize the signs: physical (redness-especially around genitals), emotional/behavioral (more common- depression, unexplained anger, rebellion)
  • React responsibly: believe them, thank them for their honesty, reinforce that they're doing the right thing, encourage them to talk but don't use leading questions, report, and seek guidance

Sexual Offence:
  • without proper sex education, may be more likely to engage in sexually offensive behaviors
    • Other reasons: history of abuse, exposure to violence or pornography, limited or no available sex partners, difficulty recognizing or expressing emotions
  • most frequent sexual offenses by people with ID: indecent exposure and nonconsensual activity with others
  • Common interventions: increased supervision, behavioral interventions, psychoeducation, legal sanctions
  • Balanced, self-determined lifestyle:
perfect-life-balance.jpg


Research:




Sex Ed for Physcically, Emotionally, and Mentally Challenged Youth:
http://www.advocatesforyouth.org/publications/publications-a-z/479-sex-education-for-physically-emotionally-and-mentally-challenged-youth

Take-home Newsletter: Sexuality and People with Disabilities
file:/Users/colleenparson/Downloads/Sexuality%20and%20People%20with%20Disabilities.pdf

Supporting People with Intellectual Disabilities to Express Appropriate Sexual Behaviors:


Watch!:
Documentary: Couple with Down Syndrome get married
http://www.monicaanddavid.com/

(Sex)abled: Disability Uncensored
https://www.youtube.com/watch?v=qA020ShNQr8
(documentary on physical disabilities)

Working with Persons with Intellectual Disabilities and Sexual Behavior Problems:
https://www.youtube.com/watch?v=YhGb3MRXXkM
(Time: 16:10-19:15)

References:
http://www.thearc.org/learn-about/intellectual-disability


http://www.projectidealonline.org/v/intellectual-disabilities/


http://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/default.aspx


http://www.racgp.org.au/download/documents/AFP/2011/April/201104eastgate.pdf


http://www.d2l.org/site/c.4dICIJOkGcISE/b.6143703/k.2746/The_5_Steps_to_Protecting_Our_Children.htm

http://www.thearc.org/what-we-do/resources/fact-sheets/sexual-offenses

Tepper MS. Becoming sexually able: education to help youth with disabilities. SIECUS Report 2001; 29(3):5-13


Ballan M. Parents as sexuality educators for their children with developmental disabilities. SIECUS Report 2001; 29(3):14-19


Neufeld J, Klingeil F, Bryen DN, Silverman B, Thomas A. Adolescent sexuality and disability. Physical Medicine & Rehabilitation Clinics of North America 2002; 13(4): 857-73


Azzopardi‐Lane C, Callus M.Constructing Sexual Identities: People with intellectual disabilities talking about sexuality. British Journal of Learning Disabilities 2014: 43, 32-37.

Sullivan F,Bowden K, McKenzie K, and Quayle E, 2013.Touching people in relationships: A qualitative study of close relationships for people with an intellectual disability. Journal of Clinical Nursing, 22,//3456-3466.