1st Edition
Sex, Intimacy and Living with Life-Shortening Conditions
Part One: Policy and regulation: National and international landscapes
1. A changing population: Young adults with life-limiting or life-threatening conditions
Lorna Fraser
2. International policy and governance related to young adults with life-shortening conditions
Julia Downing, Jenny Hunt and Fatia Kiyange
3. The regulation of sexual expression and joy: Complexities and contradictions
Claire de Than
4. British law, help or hinderance? Sexuality and disability
David Ruebain
5. A rite of passage? A UK perspective on transition for young people with life-shortening conditions
Lizzie Chambers
Part Two: Experiences of sex, intimacy and reproduction
6. Life-long learning about sex on an uncertain life course
Maddie Blackburn
7. Reasons to shag a cripple
Jamie Hale
8. Disruptions, relationships and intimate futures: The unintended consequences of pandemic control
Sarah Earle, Maddie Blackburn, Lizzie Chambers, Julia Downing, Kate Flemming, Jamie Hale, Hannah R. Marston, Lindsay O’Dell, Valerie Sinason and Sally Whitney
9. Near-death issues and the impact on the sexuality of people with intellectual disabilities during the pandemic
Valerie Sinason
10. Navigating normativity: Understanding reproductive loss in the lives of young adults with shortened lives
Sarah Earle
Part Three: Reflections on researching sexual and reproductive intimacy
11. Involving people with life-shortening conditions in research: Perspectives on co-production
Sarah Earle, Sally Whitney and Maddie Blackburn
12. Research and governance in action: Implementing research on sex, intimacy and reproduction
Alison Cooke
Biography
Sarah Earle is Professor of Medical Sociology at The Open University, UK. She is a medical sociologist with internationally recognised expertise in the sociology of reproductive and sexual health. Her inclusive research theorises the sexual and reproductive lives of under-researched or marginalised groups, exploring how this lack of agency impacts on everyday life and its meaning. She was a founding member and, later, Chair of The Open University Sexuality Alliance.
Maddie Blackburn is a retired lawyer and senior health professional, and a Visiting Fellow at The Open University, UK, where she completed her PhD. Maddie was the founding Chair of The Open University Sexuality Alliance and was previously a Chief Executive at Iain Rennie Hospice at Home and Director of Children’s and Young People’s Strategy at the Healthcare Commission, now the Care Quality Commission.
