Title
For women by women: a co-design study to address the information gaps identified by women with anal cancer.
Background
Rates of anal cancer worldwide are increasing and disproportionately affect women. Feelings of stigma and shame are commonly associated with an anal cancer diagnosis and can result in women feeling isolated and alone. Curative treatment involves concurrent pelvic radiotherapy and chemotherapy which incurs life-altering consequences affecting sexual function and intimacy. Recent qualitative research found that women were poorly informed and ill-prepared to identify and manage the adverse effects of treatment.
Aim
The aim of this study was to co-design an information resource to address the information needs identified by women with anal cancer related to female sexual function and intimacy.
Methods
We recruited an expert advisory group comprised of women with lived experience and managing clinicians across Australia, New Zealand, and USA (n= 8). Using participatory action research methods, we co-designed a patient information resource intended for women newly diagnosed with anal cancer. Initial review of the resource was sought from cancer nurses (n=10), women with lived experience (n=10), clinicians (n=5) and general practitioners (n=5). We tested the final version for usability among women (n=5) and clinicians (n=5) at an Australian acute metropolitan hospital.
Results
The final resource is a color printed booklet with dedicated sections covering key information relevant to women diagnosed with anal cancer. Information is organized according to key timepoints along the treatment trajectory. The booklet includes a glossary of terms, comprehensive lists of frequently asked questions (FAQs) and a journal section.
Conclusion
The developed resource provides women with adequate and timely information about the adverse effects of anal cancer treatment on female sexual function and intimacy. Further usability testing is proposed for rural and regional settings across South Australia and New South Wales.