Abstract
Aims Adolescents and young adults (AYA) diagnosed with cancer, broadly those aged 16-29, are known to have distinctive psychosocial and medical needs related to age and transitioning through significant life milestones at the time of diagnosis/treatment. Forming a sexual identity is a key developmental task during this phase, thus understanding the factors that enable the information needs of AYA to be appropriately identified and met is critical. This study expands on previous findings that AYA exhibited significant unmet needs around information provision on sex, body image, and relationships and aims to explore information and support preferences regarding where, how, and from whom AYA want to receive this information.
Methods Four young people aged 24-26 years, with a previous cancer diagnosis at age 14-23 years attended an in-depth four-hour workshop. Participatory activities were employed to identify the questions young people had; their support/information preferences; and, their definition of intimacy. The framework approach was used to analyse workshop transcripts.
Results Young people’s preferences of information/support provision varied. They wanted trusted sources of information and while some preferred to have face-to-face discussions with healthcare professionals, others felt embarrassed and would prefer an online platform. All acknowledged that listening to peers with cancer talk about sexuality and relationships would ‘normalise’ their questions. Feeling embarrassed (professionals and young people) was a barrier to an open discussion about their needs. Triggers for information and support included: partners (pressures/expectations); lack of sexual drive (managing side effects); body image concerns (weight gain/loss); physical constraints; and fertility concerns. Young people wanted access to information tailored to their needs.
Conclusion Findings from this study show cancer-specific sex, relationship and body image issues faced by AYA and provide important direction to the development of interventions – a balance between professional and peer support is needed. Sexual health is a key element of wellbeing and a failure to address it may place AYA at risk for long-term consequences related to sexual, identity and relationships development. This study highlights the importance of conversations relating to sexual consequences of illness and age-appropriate assessment and interventions in other contexts where disease may disrupt young people’s development.
