The importance of having choices
Parents generally felt the introduction of fertility preservation had been done well but also suggested improvements. The parents of a learning disabled young man were neither asked to mediate nor to advise staff about appropriate language to use:
- I think, with hindsight, it might have been better if they had explained to us first…they actually direct everything towards the patient. So they don’t actually direct anything towards the parents. The parent’s more outside looking in because that’s the way they run their treatment. (Father)
Of the four who banked, none remembered having a choice about where to produce the sample, for example at home, on the ward or at the sperm bank. Two had a choice about who to accompany them to the unit and were happy with their arrangements (both were accompanied by female family members). The other two were not offered a choice and were unhappy (one accompanied by a female family member and one by a male nurse). Lack of choice made it difficult for them to feel safe or supported in the way that worked best for them.
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All four had views about the room itself. Professionals had wondered about whether to offer ‘girlie’ magazines. The two youngest at the time of banking both thought it was good to make them available, one did not and the fourth did not comment. One was concerned at the lack of privacy in the room whereas another (in a different centre) felt safe as it had an inside lock, window blinds and was soundproof. One had to use an unstable pot (which tipped over with the sample in it) as no alternative was offered. The need for a preagreed system for checking progress from time to time was also identified.
The pressure of decision-making and consenting
Although investigations ranged from a few weeks to eight months, few if any expected a cancer diagnosis and none knew beforehand that fertility may be affected by cancer treatment. However, the actual process of decision-making was experienced as relatively straightforward, even though pressured, and was seen as primarily about maintaining a route to fatherhood later in life buy doxycycline online.
Some remembered having to make the decision ‘on the spot’, with the longest time allowed being a week. As newly diagnosed patients, they were in shock and being given a lot of information in unfamiliar terms and language. Many found this affected their ability to handle the information and the decision. Three, including two who refused the offer, coped by putting the banking issues to the back of their mind:
- …you were getting told so much. You kind of had to put some things to the back of your mind and had to concentrate on some…and I think I kind of blanked it out… I wasn’t thinking that far ahead. Just take one day at a time and then see what happens. (16 at diagnosis)