Why Working with Pediatric Health Care Providers can Support Healthy Sexuality for Youth with Disabilities

Why is this research important?

Youth and families living with disabilities often have inadequate education and guidance regarding sexual health development. In our current world, youth with and without disabilities are getting more sexual health information from media than through formal education or health care providers. This report aims to prove the important role that pediatric health care providers play in supporting healthy sexual development for youth with disabilities. It is important for all individuals to achieve healthy sexuality regardless of physical, cognitive or socio-emotional limitations. In this article, healthy sexuality is a state of physical, emotional, mental, and social wellbeing in relation to sexuality. Sexual health requires a positive and respectful approach to sexuality and sexual relationships as well as the possibility of having pleasurable and safe sexual experiences free of coercion, discrimination, and violence.  Pediatric health care providers can be used as a tool to eliminate barriers to sexual health for youth living with disabilities.

Research Findings

Families or caregivers of a child living with disabilities may be reluctant to acknowledge their child’s potential as a sexual individual and may shelter them from the routine pre-sexual social experiences or underestimate their interest in sex.

Education should be designed based on specific needs, be developmentally appropriate, and be culturally responsive.

The article suggests that pediatric health care providers provide support and resources for both youth and caregivers through:

Teaching about Puberty and Development

The timing and onset of puberty for a child with a disability may be different from that of a typically developing child. Pediatric health care providers can ensure children receive formal education or consultation about pubertal changes before the ages of 8-9 to help children cope with the changes they will experience.

Teaching about menstrual manipulation and suppression

There are many concerns that primary caregivers and individuals with a disability face when beginning a menstrual cycle. Some include hygiene issues, worsening seizures, worsening behavioral problems, discomfort, coping at school, and caregiver discomfort dealing with menses. Teaching both youth and caregivers about menstruation can help foster independence and teach how to manage menses or seek appropriate help. Part of the education process is about promoting shared decision making and giving the individual living with disability the power to make decisions that are best for them.

Sexually transmitted infection (STI) and pregnancy prevention.

Research has shown that youth with disabilities are more likely to engage in unsafe sex practices. Confidential counselling from a pediatric health care provider about family planning, barrier protection, and long acting reversible contraceptives can help to lower sexual risks for youth living with disabilities. As well, starting at age 9, pediatric health care providers can promote the HPV vaccine and administer the full course of vaccines. This is especially important for survivors of sexual abuse or violence.

Counselling regarding genetic reproductive risk

Pediatric health care providers or genetic counsellors can discuss best contraceptive options and reproductive risks based on specific needs and genetic makeup. It has been found that youth living with disability are three times as likely to be sexually abused. Those with intellectual disabilities face even greater risk. This is based on factors like desire to please others, a lower ability to resist attack, and dependence on others. Pediatric providers are encouraged to monitor often in developmentally appropriate ways and to provide resources.

Analyzing typical and problem sexual behaviors

Typical and developmentally appropriate sexual behaviors can provide teachable moments for health care providers. People with autism spectrum disorder may extend the ages of sexual exploration – therefore a pediatric health care provider can provide appropriate education and counselling and help work with caregivers to assess and create interventions to prevent or redirect problem sexual behavior.

Sexuality and health care transition

Health care providers must provide for and integrate healthy sexuality for all youth, especially youth with disabilities. This includes confidential conversations, appropriate genital examinations, openness to sexual and gender diversity, being sensitive, and reporting sexual assault and violence. The pediatric health care provider can work with caregivers and youth to have discussions about boundaries and consent rules.

Practical Implications

This article demonstrates the important role that pediatric health care providers play in promoting healthy sexuality for youth living with disabilities. A pediatric health care provider can be used as a tool to achieve physical, emotional, social, and spiritual sexual well-being. Caregivers and schools must collaborate with pediatric health care providers to ensure that individuals living with disabilities are receiving support and education specific to their needs both developmentally and physically.

References

Houtrow, A., Elias, E. R., Davis, B. E., Kuo, D. Z., Agrawal, R., Davidson, L. F., … & Kuznetsov, A. (2021). Promoting healthy sexuality for children and adolescents with disabilities. Pediatrics, 148(1). https://doi.org/10.1542/peds.2021-052043