Acceptability of the booklet content and format for women post

Women also described the general value the booklet had for them.

“I was very impressed with the booklet, it was something new and fresh and it didn’t instil any fear...from talking to others my immediate reaction was I’m going to die and give up, some booklets are frightening and I chose not to read them but the best thing I could have done was to read this booklet.”

“... the booklet is very useful and it’s written in a way that is easy to understand. The underlying feel to it is it’s here to help you not to distress you.”

“There was a wider dimension to the booklet than just words on a page.”

Most women liked the overall format and the inclusion of inspirational quotes throughout the booklet,

“I like very much the size, spiral binding, typeface, colours and layout of the book. As well, I think the illustrations are excellent, especially the photographs of sculptures which are relevant and tasteful. The information in the booklet is well written, very clear, and carefully worded.”

“...the pictures, the little comments, humanised and ‘unmedicalised’ it (the treatment and side effects)”

When commenting on different sections of the booklet most women (n=16) found the female anatomy diagrams in the “Understanding your body” section, and information about sexual side-effects were acceptable and helpful as educational tools, validated their experience and provided permission to discuss their needs. Furthermore, the content of the ‘Psychological/emotions’ chapter was found to be important by most participants since it again validated their experiences of the emotional/psychological and sexual/psychosexual effects of pelvic radiation treatment with women noting.

“...it’s preferable to see the diagrams here "where's (in consultation with your doctor) that a patient might feel embarrassed showing ignorance.”

“...I really liked the little emotional bits..., though all my healthcare team were excellent with treatment, you feel like a lump being pushed around for medical purposes. (The booklet had a) touch of humanity and emotion, it made me feel I’m not just a body.”

“I thought it was all important because there are those consequences, not only physical. Having it (the sexual side effects) written down validates feelings and encourages you to talk if having problems.”

Most women (n=17) also appreciated the ‘Vignettes’ sections of other woman’s experiences following PRT. A patient recovering from anal cancer also commented on how important the vignettes were for her in giving her a voice and reducing her feelings of being ostracised, again highlighting the stigma associated with this diagnosis, and the potential significance therefore of the booklet for this population.

“Yes, I thought it was very good, it makes it more personal you can relate better to someone else's story. ”

“I did appreciate the vignettes section …very much so. (I’d like) more, more, more. Again for empathy and you are not alone.”

It’s not a cancer you can talk about. I believe there will be more of it with the HPV virus. At first I said that I had rectal cancer, and then I made a decision to be open, even if people made assumptions. It gives others the courage to talk about it.”

Most of the women (n=16) responded very positively to the ‘Asking Questions’ section being included in the booklet and many patients (n=13) liked the ‘Further Contacts/QPL’ section and would access sites if they needed to, since it gave women permission to ask questions and it gave encouragement, strength and hope in that it was discussing recovery after PRT.

“I think I would have found it helpful because it gives me permission to ask questions

in the first place. It could be at the end of each section.”

“...It’s an excellent section. I have the contacts in a folder - if I needed help I know I've got it there. It gives me strength. This is a resource book for recovering”.

In summary, the booklet was found to be helpful, needed and useful for many women in the pilot study, providing information, reducing fear and distress and imparting support and care. This demonstrated a high degree of acceptability of this resource. Many women (n=17) expressed gratitude and relief for the booklet. They felt it was containing in reducing fear, and would help them to persevere through difficult and deeply distressing side effects post PRT treatment and with following the potential rehabilitation strategies such as using vaginal dilators, all emphasised in the quotes below:

“It has been extremely beneficial to have this booklet at my disposal. I refer back to it time and again and am unsure how women before me went without it. Thank you.”

“The booklet has given me an element of safety and security.”

“...reading the booklet at the most difficult time of treatment really gave me strength.” When asked specifically about the booklet content, nothing was found offensive by any of the patients. Privacy was found to be a barrier to dilator use, but the need for the booklet was strongly endorsed given women’s previous attempts to prevent the side effects, overcome barriers in using the dilators and find information on how to manage the vaginal health/sexual side effects of treatment.

“I found the booklet completely helpful, information on the brands of lubricants was really helpful, and at the time it I would have been trying to put in place using dilators. I needed private time from son, I was conscious of storing them in a place where my son could not find them and be confronted by them, it was helpful to include some information about how to keep them clean, where to store them to keep them dry, due to cleaners and children I suggest clearing a space for the dilators in a private area.”