Aim
Now What..? A Young Person’s Guide to Dealing with Cancer was developed to respond to the significant unmet psychosocial needs many AYAs diagnosed with cancer experience. This research aimed to evaluate the effectiveness of this new book in providing medical and psychosocial information to AYAs diagnosed with cancer.
Methods
A pre-post design was employed; 105 AYAs (12-24 years, M=18.7, SD=3.29) completed the pre survey (response rate: 25% of those contacted directly) and 60 (12-24 years, M=18.5, SD=3.29) completed the post survey approximately two months after they received the book. Changes in perceived knowledge associated with topics covered in the book were assessed. Additionally, the pre-survey measured levels of motivation to know more about their cancer, and the post-survey measured overall satisfaction with the book.
Results
Most AYAs affected by cancer wanted to know at least a little more about their cancer (73%) and how to cope with it (81%). Significant improvements were found in questions on knowledge around cancer, transitioning, giving consent, and emotional coping, including knowing how to cope with feelings (t52=-6.52, p=.000, d=.90), knowing about giving consent (t50=-3.23, p=.000, d=.45), and finding it easy to talk to your friends about your cancer (t56=3.15, p=.003, d=.42). Participants were satisfied with the resource, with between 80% and 100% responding positively to all 7 satisfaction statements. Of note, 80% said the amount of information was just right. The majority of participants (98%) would recommend the book to another patient. Qualitative feedback indicated that the sections relating to emotions, relationships and life beyond cancer were most useful.
Conclusions
The Now What..? book was effective in increasing perceived knowledge on topics of importance to AYAs who have been affected by cancer. High levels of satisfaction with the book endorse its usefulness as a resource to support AYA cancer patients.