Medical Home Portal - Sexuality/Reproduction

Sexuality is a normal part of the human experience at any age, but it is about much more than sex. Expressed in many ways, our sexuality includes the way we walk, dress, and interact with each other. It affects the way we see ourselves and also influences the way we are seen by others. Although our society often ignores issues of sexuality in regards to people with disabilities, caregivers can provide valuable information and support in this area for their patients and their families.

Role of the Medical Home Providers

Basic knowledge about how a specific medical condition or disability affects sexuality is essential in beginning to address this topic with patients. The patient needs to know the facts about:

Good hygiene, menstruation and regular health maintenance;
Independent or assisted management of bowel and bladder;
Menstruation, fertility, and birth control;
Sex activities and protection from sexual diseases, sex abuse and/or exploitation; and
How their sexuality may be affected by their disability throughout their lifespan.

When addressing sexuality with patients, it is important for the caregiver to be aware of his or her own sexual beliefs and biases. This can help the caregiver when assessing the patient's sexual needs and developing solutions that are appropriate for each patient and his/her family.

The PLISSIT Model provides a guide for health care providers to discuss sexuality with patients and/or their families. It helps determine the education needs of families, and assists caregivers in providing appropriate environments to discuss sexual issues and make appropriate referrals for families to obtain additional information. PLISSIT is an acronym for Permission, Limited Information, Specific Suggestions, Intensive Therapy.

Permission Giving

All health care providers should be capable of giving clients permission to discuss sexual matters. This means providing a comfortable environment in which the patient or caregiver can discuss questions they have. The caregiver should emphasize that sexuality is an integral part of life and that it is appropriate in this setting to ask questions and receive information about sexual matters.

Limited Information

Health care providers should be able to give basic information regarding general sexual matters related to the individual's disability such as: physiological changes that may result in changes in social behavior and personality; sexual response cycle; reproduction; and effective sexual techniques.

Specific Suggestions

Care providers should be able to give specific information to individuals related to their disability. These may include the effect of the patient's disability on sexual positioning, bowel and bladder management; and issues of social skills management, self-esteem and sexual health.

Intensive Therapy

This may include a referral to a relationship counselor, or to some other therapist when abuse or exploitation is involved. Education along these lines is left to professionals specifically trained in this area.

Spinal Cord Injury

Spinal cord injury in females does not normally affect the ability of a woman to become pregnant. Changes after spinal cord injury in males usually does affect erection, lubrication, sensation, and/or ejaculation.

Erection

Psychogenic erections occur in response to thoughts and require messages to be relayed from the brain to the penis. Those with incomplete injuries above T12, in the lower lumbar, or the sacral region of the spinal cord may be able to elicit this type of response, but it may be inconsistent.

Reflexogenic erections are a reflex mechanism that require S2, S3, or S4 to be intact, and have no brain involvement. They may be elicited by stimulating the penis, scrotum, or anus, but may also be inconsistent. This type of erection can occur in both complete and incomplete injuries, if the above spinal segments are not involved in the injury.

Lubrication works the same way in women as erections do in men, either reflexive or psychogenic. Reflexive lubrication can be elicited by stimulating the genitals or vagina. If the patient has had an injury to the sacral area of the spinal cord, lubrication may not occur, in which case, water-soluble lubrication may be used.

Sensation - The sex organs are not the only part of the body that can be stimulated to elicit a sexual response. Those with spinal cord injury should be encouraged to explore their body, and find those areas that are sensitive to these types of feelings. Teach them that they can use other senses such sight, smell, and hearing to help stimulate these responses.

Movement - Paralysis and spasticity can affect sexual positions that may be used. Patients with questions regarding positioning can be referred to a professional specifically in this area.

Planning ahead for a sexual interaction can also enhance the experience. This may include complete bladder and/or bowel care, or taking necessary medications before anticipated sexual activity.

Brain Injury and the Sexual Response

Brain injury may result in the same physiological issues as spinal cord injury and may be addressed in the same ways. Cognitive impairment may affect judgment, appropriate social behavior, and self-control issues. The patient may also need help with communication and sensory issues.

Resources

Information & Support

For Professionals

Sexuality and People with Disabilities ( PDF Document 257 KB)
This Medical Home newsletter provides information for primary care providers and families including a discussion of myths; American Academy of Pediatrics recommendations for education about sexuality; tips for parents; and resources, books, and websites for parents and providers.

Gynecological Providers for CSHCN ( PDF Document 114 KB)
This list includes providers from across Utah who self-identified a willingness to treat children and youth with speical health care needs in a 2005 survey to all Utah Gynecologists.

For Parents and Patients

Annotated Bibliography: Sexuality and Disability
This bibliography was compiled by Amy Levine, M.A., SIECUS Librarian and Darlene Torres, Library Assistant.

SexualHealth.com
The Sexual Health Network is dedicated to providing easy access to sexuality information, education, mutual support, counseling, therapy, healthcare, products and other resources for people with disabilities, illness, or natural changes throughout the lifecycle and those who love them or care for them.

Bridge to the Future
This training program, by the Arc of Utah, was written by experts for people with varied disabilites and their families.

Making Choices: Are You Ready? ( PDF Document 43 KB)
This handout provides brief information about healthy relationships and sex; from the Kentucky Commission for Children with Special Health Care Needs.

Understanding Puberty Fact Sheet ( PDF Document 59 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support center.

Menstrual Management Fact Sheet ( PDF Document 49 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support center.

Plan Your Health, Live Your Life ( PDF Document 8.1 MB)
Transitions are for everyone. This 6-page planning document has information for teens as they become adults including career goals, health, pregnancy planning, immunizations, STIs, personal safety, emotional health, finances, and more; developed by the Utah Department of Health and collaborative partners.

Helpful Articles

Murphy NA, Elias ER.
Sexuality of children and adolescents with developmental disabilities.
Pediatrics. 2006;118(1):398-403. PubMed abstract / Full Text
This American Academy of Pediatrics' Clinical Report provides additional information and guidance for providers relating to puberty, psychosocial considerations, sexual abuse, sexuality education, and the pediatrician's role.

Authors

Author:

Sarah Hokanson RN, CRRN, 12/2005

Reviewing Author:

Alfred Romeo RN, PhD, 12/2008

Content Last Updated:

12/2008

Funding/Support

Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.