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Abstract
Background Until recently, surviving into adulthood with a life-limiting condition was rare, and as such, young adults with life-limiting conditions are a unique population about whom it is timely to explore their considerations about intimacy, relationships and sex. Young adults with chronic conditions diagnosed in childhood, especially those who have life-limiting or life-threatening conditions, may want to experience an intimate relationship. This research builds upon the first author’s research into the sexuality of young adults with neural tube defects (1st Author 2002; 2008) and is the focus of her PhD.
Aims This research has explored the following in third sector organisations in England:
The views, meanings and experiences of young adults with life-limiting conditions about relationships intimacy and sex?
How young adults with life-limiting conditions such as cystic fibrosis, duchenne muscular dystrophy, other neuro muscular degenerative conditions or cancer may be supported in making relationship and sexual choices?
The views of parents/carers and professional staff.
The results from the interim study with 6 young adults with neuro muscular degenerative disorders, 3 parents and 4 care staff will be presented (N = 13).
Methods Using purposive sampling and qualitative methods (Figure 1), a face-to face focus group and individual, semi-structured interviews were undertaken with 12 young people with LLCs, (9 males and 3 females) in 2013/2014. The young adults, age 16+, mean age, 26 years, had mental capacity. The young adult participants had cystic fibrosis, neuro-muscular degenerative conditions and cancer. 9 young adults agreed to be interviewed more than once. Partners, parents/carers and care professionals were separately interviewed once (N=20). 5 women who agreed to participate were unwell or died before interviews.
Following approval from four Human Research Ethics committees (HRECS), the interviews are complete and the main study data is being coded and thematically analysed using NVIVO software. Codes identify similarities and differences between the young adults’ perceptions and expectations of their sexuality, compared with parents/carers and care staff.
Results/Findings Interim results indicate that the meaning of friendships, relationships, intimacy and sex may vary in young adults with different LLCs.
Conclusions Interim findings indicate the importance of parallel planning for young adults with LLCs who may or may not be approaching the end-of-life but wish to live fulfilling lives, including having intimate relationships.