Making Sense of Sex, Intimacy and Reproduction in the Lives of Young People with Life-Limiting and/or Life-Threatening Conditions

Until recently, children and young people with life-limiting and/or life-threatening conditions (LLTCs) were not expected to reach adulthood. However, advances in medicine and clinical care now mean that increasing numbers of such children and young people are living longer and transitioning into adulthood. Estimates suggest that there are now over 21 million children with life-limiting/life-threatening conditions globally (Marston, Boucher and Downing, 2018) and it is anticipated that this number will rise (Fraser, 2024). The implication of the emergence of this ‘new’ population is that issues such as sex, intimacy and reproduction have now come to the fore.

This paper draws on an interpretivist qualitative study of disabled young people with life-limiting/life-threatening conditions. The study set out to explore the meanings of sex, intimacy and relationships in their lives and in relation to wellbeing. Twenty-three young people aged 16-28 were recruited to the study via hospices and youth groups, participating in five focus group interviews.

The findings of the study highlight that young people made sense of sex, intimacy and reproduction in the context of normative assumptions about the life course and transitions to adulthood. They also understood sex and intimacy to be an important aspect of physical and emotional wellbeing, and longevity. However, this is juxtaposed against the realities of living in an ableist world and the barriers this poses in realising their aspirations for sex and love.

References:

Marston, J., Boucher, S. and Downing, J. (2018) ‘International Children’s Palliative Care Network: A Global Action Network for Children with Life-Limiting Conditions’, Journal of Pain and Symptom Management, 55(2), pp. S104–11. https://doi: 101016/j.jpainsymman.2017.03.024.

Fraser, L. (2024) A changing population: young adults with life-limiting or life-threatening conditions. In S Earle & M Blackburn (eds) Sex, Intimacy and Living with Life-Shortening Conditions. Routledge: London, pp. 11-17.