Project
The Sexuality Alliance
Research theme(s): Health Innovation
School: School of Social Sciences
Overview
Until recently, many children and young people with life-limiting and/or life-threatening conditions were not expected to live into adulthood. Advances in medical treatment and care have changed this reality, with increasing numbers now surviving and transitioning into adult life. This progress has highlighted gaps in how sexuality, intimacy, and reproduction are understood, supported, and upheld for this growing population.
The Sexuality Alliance – established in 2013 – is a multi-sectoral, multi-professional group of individuals and organisations committed to addressing these gaps. We uphold the sexual and reproductive rights of young adults with life-limiting and/or life-threatening conditions through inclusive, co-produced research that places lived experience at its centre. Working alongside young people, adults, families, carers, and professionals, the Alliance seeks to foster open communication, challenge stigma, and drive sex-positive, meaningful change in policy, practice, and education.
The Alliance has co-created practical, research-informed resources that empower young people to confidently start conversations about sexuality, relationships, and reproductive rights. Alongside this, an agenda-setting resource outlines clear principles and standards to guide staff, managers, and organisations in delivering inclusive, rights-based support.
Contact the Chair of the Sexuality Alliance, Professor Sarah Earle at sarah.earle@ntu.ac.uk if you want to know more.
Listen to young people themselves
Watch our award-winning documentary - Intimate not intimidated: it's time to talk about sex and disability - where young people talk about what matters to them.
Listen to Lucy talking about body image and independence:
Listen to Junior talking about care and privacy
Listen to Chloe and Jordan talking about baby loss, fertility and reproduction
Key resources
Members of the Alliance
Professor Sarah Earle is the Chair of the Sexuality Alliance.
Lived experience members
- Jamie Hale
- Leah Leyland
- Lewis Leyland
- Katia Santos
External members
- Dr Maddie Blackburn OBE, Visiting Research Fellow, NTU
- Jacqui Brown, Rainbows Hospice
- Alison Cooke, Myriad Centre
- Professor Claire de Than, SHADA
- Dr Helen Dring-Turner, University of Salford
- Jacqui Giddings, South Warwickshire UFT
- Hazel Godwin, Mencap
- Mandula Patel, Murray Hall Community Trust
- Phillipa Sellar, Guys and St Thomas' Hospital
- Katie Tallowin, Together for Short Lives
- Amanda Whateley, Hospice UK
Publications
Earle S (2025) Why disabled young people with life-shortening conditions need better support for intimacy. https://theconversation.com/why-disabled-young-people-with-life-shortening-conditions-need-better-support-for-intimacy-271263
Earle S and Blackburn M (2024) Sex, Intimacy and Living with Life-Shortening Conditions, Routledge.
Earle S, Blackburn M, Chambers L, Downing, J, Flemming K, Hale J, Marston H, O’Dell L, Sinason V and Whitney S (2024) ‘It’s bittersweet, it’s uncomfortable, yes, but it’s necessary’ Methodological reflections on the experiences of young adults with life-shortening conditions on being involved in qualitative research interviews, Progress in Palliative Care. https://doi.org/10.1080/09699260.2024.2375823.
Earle S (2024) Disrupting normativity: Understanding reproductive loss in the lives of young adults with shortened lives. In: Earle S and Blackburn M (eds) Sex, Intimacy and Living with Life-Shortening Conditions. Routledge, London.
Earle S, Blackburn M, Chambers, L, Downing J, Flemming K, Hale J, Marston H, O’Dell L, Sinason V and Whitney S (2024) Disruption, Relationships and Intimate Futures: The unintended consequences of pandemic control. In: Earle S and Blackburn M (eds) Sex, Intimacy and Living with Life-Shortening Conditions. Routledge, London.
Earle S, Blackburn M, Watts L and Whitney S (2024) Involving Young People with Life-Shortening Conditions in Research: A conversation on the politics of co-production methods. In: Earle S and Blackburn M (eds) Sex, Intimacy and Living with Life-Shortening Conditions. Routledge, London.
Earle S (2024) People with disabilities have sex too – so why do some doctors think otherwise? The Conversation, https://theconversation.com/people-with-disabilities-have-sex-too-so-why-do-some-doctors-think-otherwise-229581.
Earle S, Blackburn M, Chambers, L, Downing J, Flemming K, Hale J, Marston H, O’Dell L, Sinason V, Watts L and Whitney S, (2022) ‘Whose life are they going to save? It’s probably not going to be mine!’ Living with a life-shortening condition during the Coronavirus (COVID-19) Pandemic: A grounded theory study of embodied precarity, Qualitative Health Research. https://doi.org/10.1177/10497323221131692.
Earle S and Blackburn M (2021) Involving young people and adults with life-limiting conditions in research on sex: The intersections of taboo and vulnerability, InternationalJournal of Social Research Methodology, 24:5 545-551. https://doi.org/10.1080/13645579.2020.1857968.
Earle S and Blackburn M (2020) Young adults with life-limiting or life-threatening conditions: sexuality and relationships support, BMJ Supportive & Palliative Care, 11(2), DOI: 10.1136/bmjspcare-2019-002070.
Blackburn M, Chambers L and Earle S (2016) ‘Talking about sex, relationships and intimacy: New Guidance & Standards for nurses and other health and social care professionals working with young people with life-limiting and life-threatening conditions, Journal of Advanced Nursing. August. https://dx.doi.org/10.1111/jan.13089
Blackburn M and Earle S (2015) ‘Why young people with life-threatening conditions also need to talk about sex’ The Conversation. https://theconversation.com/why-young-people-with-life-threatening-conditions-also-need-to-talk-about-sex-51340