• This topic has 4 replies, 5 voices, and was last updated by Alyssa Pidgeon.
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    • #33157

      I think my main appropriate would-be future goals. Even though the patient is only 15 yrs. old he may have thought about plans for his adult life, as well as his parents. I would ask what they are and make two lists and then see how we can merge these lists together. Everything is so fresh and so crazy it’s hard to think of what the future holds, but we should encourage our patient to look forward to a future. I tell my patients that we want them to still be able to enjoy life and if there is something they need to reach out. I may not have the answers, but I can help them found answers. I would also want to know what challenges they have like financial, school, work, personal relationships. I would also ensure I have a list of support groups for the child/parents in their areas.

    • #33179

      Regarding age/developmentally appropriate information:

      • I think it’s always good to first ask the child and the family what their understanding is so far regarding their diagnosis, treatment plan, and fertility.  It’s so important to first make sure you can promptly dispel any grossly incorrect or misunderstood notions.
      • Acknowledging that the topic can be uncomfortable and scary and emphasize that the goal is to make it less scary by providing information and options so we can all make a plan that feels good for everyone.
      • Mirroring their body language and their spoken language can help everyone to feel more at ease in the discussion (ie: using the same words they do when able/appropriate while including medically relevant information).
      • Using photos/diagrams can be helpful and pointing to the parts of the body you are talking about as they come up.
      • Asking everyone if you can ask possibly uncomfortable questions before you start.  Allowing as much control as possible is so key.
      • Offer book suggestions when relevant
      • Use dolls when appropriate
      • Pause frequently to ensure they are following and see if they have questions.
      • For older children/teens, discussing preferences on family planning
      • Advocate for the patient/family if they need more time to consider & make a plan to follow up.  While understanding the importance of urgently initiating treatment, delaying by 1 day vs making a decision that impacts your life in this way also needs thoughtful consideration.

      Those are the first things that come to mind anyway not working with the pediatric population myself.

      Thank you all for the discussion,

      Mikala B, LCSW

    • #33181

      I think my main goal would be to first gain an understanding of where the patient and family are as far as the diagnosis and ask whatever questions they may have.  After that, try to assess the ability and desire to want to take in more information regarding treatment options for possible infertility.  Being able to meet the patient and family where they currently are in the process and providing them with the amount of information that may be digestible to them at one time.   Allow adequate time for questions and also allow for the patient and family to express their feelings to what is being presented to them.  It is important to use good listening skills and provide additional support resources wherever possible.

       

    • #33216

      I appreciate the above comments and the notion that fertility preservation is a way of looking forward to the future. I think it’s a very important point that Felicia raised regarding potential barriers to the patient’s fertility preservation. Many patients I see in survivorship just assume that they cannot afford ovarian harvest or storage of cryopreserved eggs and they do not ask any further questions or say they are not interested. I think it is a good idea to provide information about grants and funds available to help offset the cost of fertility preservation. Providing support groups to patients may be very helpful as many patients both on and off treatment report feeling isolated from their peers who are not undergoing or have survived cancer directed therapy.

    • #33221

      I agree with Nadia, having accurate, up to date information regarding cost assistance for fertility preservation/fertility treatment to provide patients and families with when making their decisions regarding fertility preservation is huge and something I hope we can work toward in our Onco-Fertility program at my organization.

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