The sexuality of life-limited young(er) people in the UK

Blackburn, Maddie; Earle, Sarah and Komaromy, Carol (2014). The sexuality of life-limited young(er) people in the UK. In: The 1st ICPCN Conference Mumbai, 2014, 10-12 Feb 2014, Mumbai, India.



Background and Discussion
Previously children and young people with life-limiting illnesses were not expected to live until adulthood. As a result of advances in medicine and technology, there are a growing number of children surviving into adulthood who cannot always access appropriate, specialist palliative care services as adults (Fraser et al, 2011; Fraser at al, 2012). Some children’s and young people's hospices in the UK and Australasia have made significant progress in developing transitional services for young adults whilst others are assessing what support maybe required and how best and where to deliver this care (Blackburn, 2010). What is less clear, is how intimacy and the sexuality of young people at the end-of- life should be addressed, given that sexuality may represent different things to people and that young people’s sexual needs at the end-of-life are often ignored (Triangle, 2011). Palliative care aims to be holistic, yet evidence suggests that sexuality is often overlooked when assessing care needs (Blagborough, 2010). As sexuality and intimacy are important components of quality of life until death, increasingly palliative care teams are seeking advice and information about addressing the relationship needs of young people with life- limiting conditions. Young people with life-limiting illnesses and their carers should be able to access information and be included in any discussions about sexuality and intimacy throughout their lives (De Vocht, et al 2011). This has not always been the case.
Drawing on the international sexuality and disability literature, my previous work and current research, this session will address:
• My current sexuality research with The Open University, UK
• What sexuality means to people with life-limiting illnesses in different cultures
• Young People’s choices about intimacy at the end -of –life
• Ethical and methodological issues in conducting research about sex
During late 2013 and early 2014, qualitative, semi-structured interviews will be undertaken with 10 adults with cystic fibrosis (CF) and Duchene muscular dystrophy (DMD) or spinal muscular atrophy (SMA) over 16 years, as well as carers and professionals supporting people with life-limited condition.
Results and analysis
These will be considered in 2014 but I am unable to report these at this stage

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