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Young adults with life-limiting or life-threatening conditions: sexuality and relationships support
  1. Sarah Earle and
  2. Madeleine Blackburn
  1. Faculty of Wellbeing, Education and Language Studies, The Open University, Milton Keynes, UK
  1. Correspondence to Dr Sarah Earle, Faculty of Wellbeing, Education & Language Studies, The Open University, Milton Keynes MK7 6AA, UK; sarah.earle{at}


Objective The research project addressed the need to support young adults with issues relating to sexuality and relationships though the development of guidance and standards for practice.

Methods An action research project underpinned by an interpretivist qualitative framework. Participants were recruited to the project via three hospices in the UK. Data from four focus groups were analysed thematically using a process of constant comparison.

Results Sixteen young adults with life-limiting or life-threatening conditions aged 21–33 years participated in the study. Three significant themes were identified: sexuality and the transition to adulthood, recognising the significance of sex and relationships, and realising sexual rights.

Conclusion Sexuality and relationships play an important role in the transition to adulthood for people with life-limiting or life-threatening conditions living in the UK. While young adults with these conditions may have considerable support needs, it is important to balance this with the freedom to exercise choice and to make independent decisions. Sex negativity can have an adverse impact on the experiences of young adults and creates barriers. Improved ongoing access to sex education and the provision of enabling environments that afford privacy and safety are important to support young adults with sexuality and relationships.

  • chronic conditions
  • quality of life
  • supportive care
  • transitional care

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  • Funding Funding was received from the Higher Education Innovation Fund. The funder has not been involved in study design; collection, analysis and interpretation of the data; in the writing of the report; nor in the decision to submit the paper for publication.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The project was approved by The Open University’s Human Research Ethics Committee. Ethical approval was also given by the research ethics committees of the participating organisations.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request. Deidentified participant data are available upon reasonable request from the corresponding author ORCID ID:0000-0003-2810-5659.