The Open UniversitySkip to content

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

Blackburn, M. C.; Earle, S. and Komaromy, C. (2014). Sexuality, relationships and reproductive choices of young adults 16+ with life-limiting conditions in the UK: Choice or taboo? In: 2nd Congress on Paediatric Palliative Care - A global gathering, 19-21 Nov 2014, Rome, Omics Group.

Google Scholar: Look up in Google Scholar


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.

Item Type: Conference or Workshop Item
ISSN: 2165-7386
Project Funding Details:
Funded Project NameProject IDFunding Body
Not SetNot SetUNED - Fundación VODAFONE
Keywords: young people; end-of-life; sexuality; disability; life-limiting conditions
Academic Unit/School: Faculty of Wellbeing, Education and Language Studies (WELS)
Faculty of Wellbeing, Education and Language Studies (WELS) > Health, Wellbeing and Social Care
Item ID: 45201
Depositing User: Sarah Earle
Date Deposited: 27 Jan 2016 14:33
Last Modified: 13 Aug 2019 02:37
Share this page:

Actions (login may be required)

Policies | Disclaimer

© The Open University   contact the OU