Abstract

Until recently, surviving into adulthood with a life-limiting or life-threatening condition (LLTC) was unusual (Beresford & Stuttard, 2014). Young adults with LLTCs are a growing population. It is therefore timely to explore their personal choices and considerations about sexuality, intimacy, and reproductive choices. This research aimed to understand and make the sexual knowledge and experiences of people with LLTCs more accessible and meaningful.

This presentation focuses on the first author’s PhD thesis; centring upon 13 young adults, age 16+and featuring some, but not all, life-limiting or life-threatening conditions, but including LLTCs, such as, Cystic Fibrosis and Duchenne Muscular Dystrophy. This research also sought the views and contributions of family supporters: two partners, ten parents and ten care practitioners, in order to gain their understanding about the sexual knowledge and experiences of people with LLTCs. This research used a qualitative approach, underpinned by a life course theoretical perspective. What has emerged is a picture of the transitions which occur from childhood to adulthood, from comparative wellness to progressive illness, uncertainty about the life course and most importantly, the sexuality of people with LLTCs.

The findings aim to influence policy and practice. They suggest that the voices of young adults are insufficiently heard, and that there is a gap in the provision of information particularly in relation to their sexuality and reproductive choices. As an increasing number of young adults strive for independence and sexual citizenship, efforts need to be congruent with and grounded in the views of those most personally involved; the young adults themselves.