1. An examination of the role of partners in helping to meet the support needs of adolescents and young adults with cancer
Dr Jane Davies

2. Why is this research important ?
Previous research in AYA cancer
The ‘lost tribe’
Age appropriate support needs
What do we know about the experience of partners when supporting young people with cancer?
Real world significance

3. How will this research make a difference?
Evidence based development of an age appropriate resource
Inform and empower partners
Impact on unmet needs
Improve the experience of young people and their partners

4. Study design, methods and analysis
Qualitative exploratory study
Narrative enquiry
Listening to partner stories
Two semi structured interviews with each partner (N=10)
Diary keeping between the first and second interviews
Thematic analysis

5. Early Findings
There is evidence that partners play a central role in supporting AYA through the cancer experience, in some cases they are the primary source of non-professional support.
Partners sometimes act as a conduit between the AYA with cancer and their wider family in sharing information.
Prior to and/or at the time of diagnosis AYA do not always wish to immediately disclose the situation to their parents and wider family, thus keeping the information between themselves and their partner.
Partners experience significant disruption to their work/study, however they receive good support from their employers/educational providers.
“Yeah, well he knew that he had to but he just didn’t want to, he wanted to wait, like how do you tell your mum?” (interview one case four pg. 6).
“I’ll be out on Thursday for chemo (supporting partner) back Friday” … “Are you sure you don’t want to work from home Friday?” (interview one case three pg. 8).

6. How can the outcomes of this research be maximised?
Application of knowledge mobilisation
Collaboration with leading UK charities
Sharing with established international partners
Underpinned by a planned systematic and targeted dissemination strategy

7. Further research
Effective information sharing for partners of adolescents and young adults with cancer.
Coping with cancer when an adolescent or young adult has dependents.
Involving partners in decisions about fertility when adolescents and young adults are receiving cancer treatment.

8. Useful references
Davies, J., Kelly, D. and Hannigan, B.(2015). Autonomy and dependence: a discussion paper on decision-making in teenagers and young adults undergoing cancer treatment. Journal of Advanced Nursing, 71, 9,
Davies, J. (2015). The fluctuation of agency in teenagers and young adults with cancer. Unpublished PhD, Cardiff University.
Davies, J., Kelly, D. and Hannigan, B.(2018). ‘Life then’, ‘life interrupted’, ‘life reclaimed’: The fluctuation of agency in teenagers and young adults with cancer. European Journal of Oncology Nursing, 36,
Kelly, D. (2018). Beyond no man’s land: Leadership and the development of AYA services :in Olsen, P.R. & Smith, S (Eds) (2018). Nursing Adolescents and Young Adults with Cancer. London: Springer pp
Kelly, D. M. and Vougioukalou, S The impact of cancer treatment on sexuality and relationships for teenage and young adult cancer survivors. In: Reisman, Y. and Gianotten, W. L. eds. Cancer, Intimacy and Sexuality: a Practical Approach.   Springer, pp