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Talking about…sex and relationships: Young people speak out

This project will help young people with life-limiting conditions navigate conversations around sex, sexuality and relationships, as well as supporting professionals, through the production of open educational resources (OERs) and a professionals’ booklet to assist conversations around this sensitive subject area.

I am a Project Lead for this project, as well as Chairing the Open University Sexuality Alliance (OU-SA) Young Advisory Group, AdversiTeam, which I set up early in 2018 to support the work of the OU-SA and to enable young people to lead on the next body of work. The AdversiTeam decided upon the next body of work and what our priorities are, which led to us building a new project — and this project is the result.

Below is the introduction to the project, and further down you will find the links to the interactive and listicle resources themselves – please do use them and feed back to us how beneficial they are and how you have been able to use them – as a young person, parent, carer, teacher or healthcare professional. 

Here’s the Open University website introduction to this project:

How do young people facing life-limiting or life-threatening conditions handle relationships and talk about sex?

Making friends, exploring sex and developing relationships are an important part of becoming an adult. But young people with life-limiting or life-threatening conditions have limited opportunities to learn about relationships and sex. Family, carers and health practitioners can feel ill-prepared to discuss sex with young people.

Background Information

The sex and relationships project for people with life-limiting conditions is a multi-agency, multi-professional inclusive study exploring sex, intimacy and relationships for young people and adults with life-limiting and/or life-shortening conditions.

Until the 1990s, children and young people with life-limiting conditions were unlikely to survive into adulthood. These children often died soon after birth, in early childhood, or their early teens, because of the seriousness of their conditions; only exceptionally did they survive into adulthood. Due to advancements in medical science and technology, improved neonatal care (albeit with significant morbidity), and overall improved health, clinical and social care services, increasing numbers of children with life-limiting conditions are surviving into adulthood, indeed many into their third or fourth decade.

Talking about sex and relationships can be difficult in so far as it is often considered to be something that is personal, private and even taboo. For adults with life-limiting conditions talking about this subject can be even more difficult because most individuals were not expected to live into adulthood and are now doing so but their life trajectory and expectancy is uncertain and likely to be limited. Many adults with life-limiting conditions will be living with physical and/or cognitive impairments as a result of their condition, as well as experiencing bouts of acute and chronic illness and periods of treatment. Many individuals will be living or will have lived in residential settings and will have spent considerable time in hospitals or in hospices. On reaching adulthood, many individuals are also likely to be living with family, be reliant on carers and are less likely to be living independently in comparison to people of similar age.

Very little is known about the needs and expectations of this new group and given its demographic infancy, very little empirical work has been carried out with this population. The objective of this study was to explore the views of people with life-limiting conditions focusing specifically on the issues of sex and relationships.

The first phase of this project, which was funded by the Higher Education Innovation Fund, focused on the development of guidance and standards on sex and relationships for those working with or supporting people with life-limiting conditions. A copy of the guidance and standards is free to download here.

You can find out more about this study by visiting the Sexuality Alliance website, by checking out the blog written by some of the young adults involved in the project, or by reading this article in The Conversation.

Led by The Open University – Talking about…sex and relationships: Young people speak out – will help these young people navigate this sensitive subject. With Hospice UK, the project will develop educational resources to help young people have conversations about sex, intimacy and relationships with their family, carers or professional support staff. Health practitioners will better support them on this invisible topic through knowledge, resources and a better understanding of the views and experiences of young people themselves. It has been awarded £40,000 by the Improving Transitions for Young People Fund, run by the charity Together for Short Lives.

Check Out Our Open Educational Resources!

“Let’s talk about sex, intimacy and relationships..” Interactive Resource – featuring videos, information and survey questions:

https://www.open.edu/openlearn/health-sports-psychology/young-peoples-health/lets-talk-about-sex-intimacy-and-relationships

This resource aims to help open up conversations around sexuality, sex, intimacy and relationships, and created to be used by young people as well as by parents, carers, healthcare professionals and teachers. The resource features four videos of young people with life-limiting conditions speaking about different topics including sex, dating, sex education and privacy, along with information, advice, links and further resources to assist in conversations around these subjects, as well as linking to practical information around sex and intimacy for further reading. The resource itself doesn’t provide sex education or practical information around sexuality, intimacy, sex and relationships, but exists to support individuals (young people, parents, professionals) to have these conversations and to break down the ‘taboo’ that exists.

Nine top tips on talking about sex… for young people with a life-limiting or life-threatening condition

https://www.open.edu/openlearn/health-sports-psychology/young-peoples-health/9-top-tips-on-talking-about-sex-young-people-life-limiting-or-life-threatening-condition

A listicle resource with 9 top tips to encourage conversations about sex and intimacy and also encouraging people to be comfortable with their own needs, preferences and experiences.

Five things to know about being disabled and LGBTQ

https://www.open.edu/openlearn/health-sports-psychology/young-peoples-health/five-things-know-about-being-disabled-and-lgbtq

Disabled people are often wrongly assumed not to have sexuality or interest in sex! Here, Jamie Hale reels off 5 things you need to know about being disabled and LGBTQ…

Previous Work:

This follows on from our previous work, which was the production of the Talking About Sex, Sexuality and Relationships Guidance and Standards (2016).

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