Involving young people with life-limiting conditions in research on sex: the intersections of taboo and vulnerability

Abstract

There is a growing literature that seeks to explore what is 'sensitive' about 'sensitive' research. In order to problematise and interrogate the concept of what may or may not be considered 'sensitive' research, this paper draws on four related projects exploring sex, intimacy and relationships for young people, over 16 years, who have life-limiting or life-threatening conditions (LLTCs). The authors focus on how, when and why these projects are regarded as 'sensitive' and consider who defines them as such. Drawing on the notion of methodological performativity, a mixture of complex phenomena that explores the relational aspects in interprofessional team practices, the authors examine aspects of the process of doing 'sensitive' research, exploring how research methods and techniques are employed because the research has already been defined (by others and the authors) as 'sensitive,' while simultaneously serving to (re)construct and (re)enforce the 'sensitive' nature of it.

Addressing sexuality and intimate relations in community mental health services for people with serious mental illness: A qualitative study of mental health practitioners’ experiences.

“…Paradoxically, however, MHPs may have little to no access to training regarding client sexuality, and the field as a whole remains noticeably underdeveloped in its engagement with sexuality compared with employment, housing, and symptom self-management. Our findings shed light on MHP perspectives of the complex and varied ways in which they encounter client sexuality, and the dilemmas and emotions these encounters evoke, echoing work on the taboos against and underdevelopment of services focused on sexuality among people with disabilities in general (Earle, 2020;Shakespeare & Richardson, 2018).…”

OK Cupid, Stop Bumbling around and Match Me Tinder: Using Dating Apps Across the Life Course

“…It is, recognized, however, that young people with complex disabilities and high support needs tend to be socially excluded from mainstream life and are often “shut out” from society (Morris, 2001). An action research study focusing on the views and experiences of young people with LLTCs in the UK on sex, intimacy and relationships identified the importance of this issue for the transition of young people to adult life (Earle and Blackburn, in press). This study draws on the experiences of 16 young adults living with a variety of LLTCs aged between 21 and 33 years.…”