1st Edition

Sex, Intimacy and Living with Life-Shortening Conditions

Edited By Sarah Earle, Maddie Blackburn Copyright 2024
    214 Pages 8 B/W Illustrations
    by Routledge

    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


    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.