Sexuality and disability

Presentation at RSM, Palliative Care Section, Marie Curie: People who care Conference, 6^th October 2017

Until relatively recently, children and young people with life-limiting and/or life-threatening conditions (LLTCs) were not expected to live into adulthood. Today there are approximately 55,000 people with a LLTC living in the UK (Norman & Fraser 2014). Given its demographic infancy, very little empirical work has been carried out with this population and even less is known about the needs and expectations of young people with LLTCs on sex and relationships.

The project aimed to explore the significance of sex and relationships for young adults with LLTCs focusing, in particular, on the impact of this on their sense of wellbeing.

The study was carried out within a qualitative framework.  Twelve participants were recruited to the project via a network of hospices and organisations that support young adults with LLTCs across the UK. Three focus groups were held in April 2017. The focus groups were hosted by two hospices and one organisation that provide support to young people with LLTCs.

A thematic analysis of the focus group data highlighted three themes relating to the significance of intimate relationships for young adults with LLTCs. These are: (1) intimate relationships as rite of passage; (2) the significance of intimate relationships on happiness, and (3) social isolation and participatory barriers.

Young adults with LLTCs experience a combination of social exclusion and social isolation which impacts on their participatory opportunities. This lack of participatory opportunity subsequently impedes their ability to form meaningful, intimate relationships that could enhance wellbeing.

31^st Triennial ICM Congress, 18-22 June, Toronto, Canada

Women with learning disabilities have a right to control their own bodies and to make decisions regarding their reproductive and sexual lives. However, women with learning disabilities can also be vulnerable to inappropriate reproductive control (Tilley, Walmsley & Earle, 2012). This project, which was developed by an inclusive and collaborative all-female research team, set out to explore what women with learning disabilities know about contraception and to understand how women make reproductive choices.

31^stContraceptive choices for women with learning disabilities: Report 2015

‘Contraceptive choices for women with learning disabilities’ is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom.

International Paediatric Palliative Care 'Worlds apart: Culture and context in caring for the whole child’, 26-28 July, Cardiff, UK.

Blackburn M, Earle S and Komaromy C (2017)

Sex, Education and Health, Disability Studies Conference, 6-8 September, Lancaster, UK.

Blackburn M, Earle S and Liddiard K (2016)