Background The term ‘sensitive research’ first emerged in the 1960s. Since then there has been a growing acceptance that many topics are ‘sensitive’ in nature, including those that separately address sexuality and disability at the end of life but maybe further compounded when such topics are explored together.
Aims This presentation will focus on four intersecting ‘sensitive’ issues: sexuality, disability and young adults with life-limiting or life-threatening conditions on an uncertain life-course, who may or may not be approaching the end of life. The sensitivities of conducting research about sexuality with young disabled adults and the dilemmas encountered for both researchers and practitioners will be addressed.
Methods and results This presentation draws on the in-depth, qualitative research interviews of the first author’s doctoral thesis about intimacy, relationships, sexuality and the reproductive choices of 13 young adults with life-limiting conditions, two partners and the views of 10 parents and 10 practitioners (Blackburn, Earle & Komaromy, 2014). The findings highlight multiple taboos and ‘sensitivities’ when researching sex with young adults who may or may not be approaching death. These include addressing posthumous consent in advance of death, access to research participants and the implications for General Data Protection Regulations. Affective aspects for addressing the research findings and reflections on why research with young adults about sexuality, disability, dying and end of life is often regarded as taboo and sensitive will be explored.
Conclusions There is a delicate balance as to whether research about sex encroaches too sensitively on participants’ lives, whilst recognising that there are important ethical considerations for the research relationship between participants and researchers.
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