This thesis details an empirical exploration of how young adults with life-limiting and/or life-threatening conditions talk about sexuality, intimacy, relationships and reproductive choices; what these mean, the difficulties they encounter along an uncertain life course, their relationship experiences, and what would be helpful to assist and make their lives more meaningful.
The research centres on 13 young adults aged over 16 years, featuring some, but not all, life-limiting or life-threatening conditions. These include cystic fibrosis, duchenne muscular dystrophy, other progressive neuromuscular and rare conditions, certain cancers and other genetic conditions. The research also explores the views and contributions of family supporters: two partners, ten parents and ten care practitioners, seeking their views in order to advance the young adult’s sexual and relationship fulfilment. Until recently, surviving into adulthood with a life-limiting or life-threatening condition was unusual. Young adults with these conditions are a growing population and it is timely to explore their personal choices and considerations around sexuality, intimate relationships, and reproductive choices. The research used a qualitative approach, underpinned by a life course theoretical perspective, in conjunction with the illness experience and intersectionality with sexuality on an uncertain life course, to make sense of the participants’ varied and personal contributions. What emerged was a picture of the transitions which occur from childhood to adulthood, from comparative wellness to progressive illness, uncertainty about their life course and importantly, their sexuality.
The findings suggest that the voices of this group are insufficiently heard and that there is a gap in the provision of information with respect to their transition from childhood to adulthood, particularly in relation to their sexuality and reproductive choices. As this group strives 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
