Holland Bloorview Kids Rehabilitation Hospital is pleased to announce the launch of the Teens, Sex and Neuromuscular Conditions: A Practical Guide for Clinicians guidebook. Created in partnership with Muscular Dystrophy Canada (MDC), the guide is an educational resource for health care professionals (HCPs). It includes guidance and handouts on topics ranging from navigating conversations around friendship to supportive positioning for sexual expression.

This much-needed guidebook arrives at a critical time as youth and young adults with NMDs encounter barriers when seeking the appropriate knowledge, education and support for sexual identity and expression. Conversations about sexual health and expression can be difficult for health care professionals due to internalized and societal stigma around sex and disability. Nevertheless, sexual health is a crucial part of client care that cannot be neglected.

The information and resources found within the guide are informed by the diverse perspectives of health care workers across a variety of disciplines as well as by youth facilitators, researchers and folks with lived experience of disability.

In addition to practical recommendations to help address the needs and goals of clients, health care professionals can also explore a variety of resources in the guide to jumpstart their own learning about sexual expression as it relates to neuromuscular conditions.

Helpful information found in the Teens, Sex and Neuromuscular Conditions: A Practical Guide for Clinicians includes:

• What to consider when addressing sexual expression, gender and sexual orientation with clients
• Guides for health care professionals to facilitate important conversations about relationships, consent, and sexual expression
• Strategies for problem-solving physical challenges with sexual activity through energy conservation and supportive positioning
• Identifying safe sex practices and supporting opportunities for privacy
• Additional resources for clinicians, including client and caregiver handouts

To learn more about the Teens, Sex and Neuromuscular Conditions: A Practical Guide for Clinicians, we talked to project leads Charise MacDonald and Amanda Landry, both of whom are registered occupational therapists at Holland Bloorview.

Can you tell us more about your roles at Holland Bloorview?

Charise: As occupational therapists on the neuromuscular team, we support kids from the time they were referred to us until they are discharged to adult services when they are 18 years old. We work to help clients achieve their goals, which are often related to mobility, safety, participation and activities of daily living (ADLs). We also work closely with the client’s other team members to support them in areas such as school, recreation and transitioning to adulthood.

What were some of the factors that motivated you to create this guidebook, and how did this project start?

Amanda: When we started working together, I had experience creating and running programs on sexuality and relationships for youth with autism and developmental differences, and Charise brought a wealth of knowledge about neuromuscular conditions. We saw that there was a gap specific to this population with respect to sexuality and relationships as a component of transition to adulthood, and we started discussing the ways we might be able to feasibly address that gap.

We started the initial phases of the project in fall 2020, working in collaboration with other team members within the hospital, including our neuromuscular team to identify what type of resource would be helpful, and relevant information to include. In late 2021, Charise initiated the partnership with Muscular Dystrophy Canada to obtain the funding, which was a really big catalyst pushing the project forward. Since then, we’ve had a lot of input and support from a range of clinicians across the country, including other occupational therapists and physiatrists. We also had support from University of Toronto students from both the occupational therapy and social work departments. It’s really been a team effort.

Charise: When it came to addressing sexuality and disability, we found clinicians weren’t necessarily asking clients about their sexual health and well-being, even when clients were interested in discussing these topics. There aren’t a lot of resources out there for families or clinicians dedicated to this, so there was definitely a lot of room to create and offer more resources about sexual health and expression to help clients with neuromuscular conditions.

What are some of the challenges faced by youth with neuromuscular conditions in regards to sexual health and expression?

Amanda: There are many layers to the challenges faced. Unfortunately, there persists a myth in society that individuals with disabilities are not sexual beings, and we know that’s not true. Just by identifying as a person with a disability, you’re going to encounter potential barriers to accessing information pertaining to sexuality because people might assume that you’re not interested.

Charise: With neuromuscular conditions, there can be specific barriers that can impact sexual expression and participation, requiring more clinical support than people in other populations. Given this, we focused on providing more information and resources aimed at helping those with neuromuscular conditions.

What are some of the resources available in the guidebook? And in addition to the guidebook, are there any other resources you would recommend?

Amanda: There’s quite an extensive list of resources within the guidebook and they are broken down into categories to help people find what they’re looking for. There are subcategories such as toys and tools, gender and sexual orientation, and workshops and services. The guidebook is for a national audience and the resources included were gathered with help from our partners across the country. Ultimately, we wanted to make the resources as accessible as possible for people, no matter where they are in the country.

Charise: In addition to resources that are specific to health care professionals, there are also resources in the guide for individuals who want to do more research on their own. Outside of the guidebook, another helpful source of information is the Disability and Sexuality Resource Hub that Holland Bloorview has launched. There’s a huge wealth of information there for clinicians as well as individuals who have disabilities.

Who would you like to acknowledge and thank for their contributions?

Amanda: We want to extend our gratitude to the clients and their families who took the time to provide feedback and review materials when we were developing the guidebook. We also want to thank Muscular Dystrophy Canada for all the support and funding. And of course, we had help from so many different clinicians, families and students along the way, so we appreciate everyone’s contribution in making this guidebook happen!

What goals do you hope to achieve with this guidebook?

Charise: One goal is to encourage and achieve a more open environment for health care professionals to have these conversations about sex and disability with clients. We’re hoping the information and resources available will help people feel more comfortable while allowing clinicians to provide better and all-encompassing care for clients.

Amanda: My hope is that we can create some change and shift away from the stigma and taboo around sex, just recognizing it as a normal part of life that everybody has a right to explore and receive information and health care for.

Also, the guidebook is not comprehensive in the sense that it does not cover everything there is to know. It’s a small yet important piece of a much bigger world. Our hope is that this resource will contribute to the ongoing conversations and interventions around sexuality and disability, reducing associated stigma, and improving overall client care.

The guide is now available here as a downloadable interactive PDF with easy navigation and access to all media links. It is also compatible with screen readers and other accessible technologies. The launch of the Teens, Sex and Neuromuscular Conditions  guidebook empowers health care professionals with a toolkit that not only encourages open conversations about sex and disability, but also allows them to be better prepared to care for the needs of youth with neuromuscular disorders.

For more information about the guide, please visit our Neuromuscular Services page.