Sexuality, relationships and reproductive choices of young adults 16+ with life-limiting conditions in the UK: Choice or taboo?

Background: This research builds upon the first author’s previous research (2002: 2008). The population is defined as “those children born with or who have acquired during childhood, life-limiting condition(s) which are neuro-degenerative, genetic or metabolic in origin, some of whom are now living into adulthood, though are still unlikely to reach old age.”(First author, 2014). More children over 16 years with life-limiting conditions (LLCs) are surviving into adulthood because of medical advances in the treatment of their conditions (Fraser et al,2013: Beresford et al, 2013). Aims: This research aims to explore and critically analyse the experiences and understanding of relationships and sexuality among young people, age 16+ with LLCs and the impact of changing societal attitudes, information and the law. It hopes to benefit young people with LLCs, as well as their families and care staff. Methods: Building on the first author’s previous research (2002:2008), using purposeful sampling and qualitative methods, face-to face focus groups and semi-structured interviews are being undertaken with young people with LLCs age 16+. Their parents/carers and care professionals are being separately interviewed in three hospice services in England. Following approval from four research ethics committees, a pilot study has been completed with young adults, parents and care sta in a hospice service.( N=13). By October 2014, the main study interviews will be nished and analysed along with pilot data from the other hospice services( (Total= 50). The interviews are being analysed using qualitative data software, NVIVO. Results: Early results indicate the need for information about sexuality, relationships and genetic screening which is specially designed for people with LLCs. Conclusions: As the study is ongoing, the proposed presentation will include study data, significance of the results and their implications for young adults, families affected by LLCs, carers and care staff