1st Edition
Sex, Intimacy and Living with Life-Shortening Conditions
This multi-disciplinary and inclusive collection brings together theoretically informed and empirically focused research on sex, intimacy and reproduction in relation to young people and adults with life-shortening conditions.
Advances in healthcare mean that increasing numbers of young people with life-shortening conditions are transitioning into adulthood. Issues such as sex and intimacy, dating and relationships, fertility and having children are increasingly relevant to them and to the people that support them, including families, carers, practitioners and professional education, health and social care agencies. This three-part book explores the relevance and significance of this field, examines everyday experiences, and highlights the challenges faced by individuals and organisations in addressing the needs of such people in daily life and in the context of practice.
Drawing on perspectives from sociology, disability studies, epidemiology, health policy, psychotherapy, legal studies, queer studies and nursing, this ground-breaking volume is written by academics, policy makers, practitioners and experts by experience. It is an essential read for all those practising and researching in the fields of sexuality, chronic illness and disability and transition.
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.
