Approximately 2000 young people (15-29 years) are diagnosed with cancer each year in Australia and most (88%) will survive. Late effects are commonly experienced and include risk of second cancers, endocrine, cardiopulmonary, cardiovascular, renal, fertility and neurosensory dysfunctions, as well as psychosocial, financial and educational complications. Identifying perceived unmet needs in survivorship is a crucial step in developing new services to promote wellness and reduce consequences of late effects.
We aimed to recruit 50 survivors to our ARCHWAY project, a study that aims to identify unmet needs of young people and their perceptions of optimal components for a wellness program. Participants were to complete an online survey with a subset of 30 completing an interview. As well as targeted recruitment through Queensland Youth Cancer Services, we set out to optimise recruitment using social media. Targeted recruitment involved face-to-face discussion in clinic and telephone and email communication. The Queensland Youth Advisory Group helped design promotional material for advertisements containing a QR code and links to the survey; these were pushed out through social networks using Facebook, Twitter and Instagram.
Two months into a planned three month recruitment timeframe, 29 surveys were completed and 16 interviews. Social media promotions resulted in few (8) participants while targeted recruitment was more successful. Still, only 50% of those who provided an email address to complete the survey actually did so. A number of young people gave specific reasons for not participating. Those who were closer to end of treatment were more reluctant to participate with statements such as ‘I’m too busy’ and ‘I just want to forget about it all’. Those who had completed treatment six or more months previously were more willing to participate. The use of an iPad to facilitate immediate completion of surveys during clinic was a useful strategy. Multiple strategies were needed to engage young people and reach our target sample size.