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.
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.
Dr Sarah Earle, Director of the Open University’s Priority Research Area in Health & Wellbeing, says:
Sometimes sex can be difficult to talk about, especially if you are a young person with a life-limiting or life-threatening condition. Over the next two years this project will support young people to talk about sex, relationships and intimacy, ensuring that their needs are met, and that they have every opportunity to live a rich and fulfilling life filled with friendship and fun.
The three videos here have been produced as part of the project and aim to break barriers, challenge assumptions, overcome negative perceptions and try to correct prejudiced attitudes by putting sexuality on the radar for young people with life-limiting or life-threatening conditions (LLTCs). The videos share some experiences of young people with LLTCs who are trying to live their lives to the fullest. The films address relationships, sex, intimacy, privacy, reproductive choices and loss and the challenges young people face. We hope that the three videos will be used by health and social care professionals and others to improve recognition and understanding for young people as to how sexuality, sex, relationships and intimacy are crucial to physical, social and emotional well-being.
Navigating sexuality and relationships
Chloe is 23 and lives with her partner Jordan in Stratford-Upon-Avon, UK. She feels there is a gap in education and awareness of the needs of young people with life-limiting conditions.
“I live with a number of conditions contributing to a life limiting condition and disabilities. This has been something I have dealt with since a young teenager, an age where puberty hits and young people usually grow into relationships and their sexual identity. As a young person with a disability this was something very different for me to navigate and with very limited support and resources it was something I feel I have navigated alone. I am now blessed with an incredible partner Jordan, who I have been with for 3 years. We have also been trying to start to grow a family which sadly resulted in the loss of our daughter at 22 weeks and 3 miscarriages.”
“As a disabled person with life limiting illness planning to start a family I have faced difficulties in lack of understanding and ethical uncertainties that i feel the work of the OU-SA could have helped clarify massively. I strongly believe that the needs of young people in regards to sexuality and relationships when dealing with life limiting conditions and disability could be supported in a much better way.”
Support for this aspect of life
Lucy Watts MBE, who recently became an OU Honorary Graduate, is part of the OU Sexuality Alliance and is a disability advocate. She said:
“We all have differing experiences of sexuality, sex and relationships and have come together as we passionately believe that it is a normal part of growing up and we want to make sure we, as young people, and the professionals and individuals around us, have the tools and resources we need to explore and be supported with this aspect of our lives.”
Sexuality Alliance and Project Partners
Carrie Aimes, Adversi Team
Sharon Ballingall, Children’s Hospice Association Scotland
Celine Barry, Action Duchenne
Maddie Blackburn (Chair of the Sexuality Alliance) The Open University
Leah Booth, Adversi Team
Colin Bowker, Care Quality Commission (CQC)
Lucy Brumpton, EACH
Lizzie Chambers, Together for Short Lives
Mark Chapman, DMD Pathfinders
Alison Cooke, Rainbows Hospice
Chelsea Corbett, Adversi Team
Claire du Than, SHADA
Sarah Earle (Principal Investigator) The Open University
Amy Frouks, Adversi Team
Hameed Jimoh (Junior), Adversi Team
Simon Hardcastle, East Midlands Clinical Network
Jon Hasti, DMD Pathfinders
Sharon Harvey, Demelza Hospice
Laura Klepping, Helen & Douglas House Hospice
Susie Lapwood, Helen & Douglas House Hospice
Kirsty Liddiard, University of Sheffield
Ravi Mehta, Adversi Team
Sam Mildon, Adversi Team
Manjula Patel, Murray Hall
Chloe Print Lambert, Adversi Team
David Raeburn, Public Legal Education & Pro Bono Specialist
Molly Smith, Adversi Team
Phillipa Sellar, St Christopher’s Hospice
Anjali Solanki, Adversi Team
Rebecca (Becca) Torricelli, Adversi Team
Carole Walford, Hospice UK
Lucy Watt MBE, Master of The Open University, Adversi Team
Katherine Watt, Carer/Parent Expertise
Lauren West, Muscular Dystrohpy UK
Richard Whateley, The Myraid Centre