The sex and relationships project for people with life-limiting conditions

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.


Sexuality Alliance and project partners

Sharon Ballingall, Children’s Hospice Association Scotland

Celine Barry, Action Duchenne

Maddie Blackburn (Chair of the Sexuality Alliance) The Open University

Paul Casey, The Family Planning Association

Lizzie Chambers, Together for Short Lives

Mark Chapman, DMD Pathfinders

Alison Cooke, Rainbows Hospice

Tracey Dempster, Richard House Hospice

Claire du Than, Institute of Law Jersey

Sarah Earle (Principal Investigator) The Open University

Meena Enewalla, Richard House & St Joseph’s Hospices

Simon Hardcastle, East Midlands Clinical Network

Sharon Harvey, Demelza Hospice

Laura Klepping, Helen & Douglas House Hospice

Susie Lapwood, Helen & Douglas House Hospice

Kirsty Liddiard, University of Sheffield

David Raeburn, Public Legal Education & Pro Bono Specialist

Tracey Reed, Demelza Hospice

Phillipa Sellar, St Christopher’s Hospice