- This topic has 14 replies, 15 voices, and was last updated by eleshiamorrison.
January 29, 2020 at 9:29 am #17364
Discussing fertility preservation with pre-pubertal children and their parents is extremely important, but can be difficult to navigate. I think it is important to identify the goals of the family as well as the patient if they are old enough to understand the situation. Speaking with the patient separate from the parents is also important (again, if age appropriate), because many children would be very uncomfortable discussing topics surrounding sexuality with their parents. Obviously presenting the available options and identifying which options would be appropriate for the patient is important too, but I think the major thing is making sure that everyone’s voices are being heard, most importantly the patient’s voice. If time permits, I think it would also be a good idea to provide the family with reading materials to review at home because I find that many times, patients and families that are overwhelmed with information really do not retain a lot of education and knowledge.January 29, 2020 at 2:17 pm #17377
I confirm the need talk separately with parent’s and children about fertility options as A Thompson mentioned above. The teenager actor in the post seemed uncomfortable and overwhelmed by the discussion. I really like how the therapist reviewed goals with the family up front. I also liked how he gave permission and control back to the family that “there is not a right or wrong decisions” but that end goal is that the patient/family are at peace with the decision going forward.
I work with GYN/ONC and many adult women and their partners have a hard time talking about sexual health. I can only imagine how difficult it would be for a parent/child. Hopefully, through normalizing the need to discuss fertility options, giving space for all family units to express their questions/concerns and encouraging permission to make their own decisions will leave patients and families whole for years past primary treatment.January 30, 2020 at 9:24 am #17384
Yes @emarrett01 I also like how the psychologist stated there is “no right or wrong decisions” and I also liked how he opened up the discussion with asking the family to verbalize their understanding of what has already been explained to them by the medical team. As a social worker, I open up many of my discussions in this way. I find it a useful practice because it allows me to start where the patient/family are and it gives me a point of reference to begin the conversation.
I also like that he provided education on the various options and why it was important to discuss now but he also addressed the father’s concern of feeling pushed/forced when he said that the discussion was also so they could figure out if “fertility preservation is right for you.”
This video was very poignant, the look of concern on everyone’s faces and the complexity of information being provided is very overwhelming. There is no easy way to have this conversation and present the information but I thought the psychologist did a solid job. I agree that speaking to the patient in private is a also a good idea. I also find peer support very helpful and if the patient might be able to speak with a young man who was challenged with having to explore fertility options due to a cancer diagnosis, having a conversation from a patient perspective who actually experienced it may also prove helpful.January 30, 2020 at 5:56 pm #17395
This looks like an all too familiar set up, I work in a pediatric oncology program. I am always torn about doing education with the teen in the room first or educating the parents and then pulling the patient into the room for the discussion. Some teens are ready for it, others just want mom and dad to make a choice or help them decide. I think it is appropriate to ask the patient their preference knowing we will be talking about sexual heath .
I think it was a good talk overall with a clearly overwhelmed family and made it clear the decision to not move forward is appropriate but we just want them to know and be presented with all their options.February 3, 2020 at 3:58 pm #17441
I am fairly new to oncology, a little over a year. I currently work with adults and so far have not heard anyone address this topic so this training is of utmost interest to me. I think the psychologist did a great job. I would have liked to have heard more of the interview. I think it was very important and noteworthy that he first of all asked what they already know about the topic and I too agree with the two respondents, emarrett and Shelly that he said there are “no right or wrong answers.”
The patient and parents look very scared and overwhelmed and by dad’s response do not seem to understand the importance of the discussion about fertility at this time as they are more concerned about their son’s survival. I noticed the mom holding the son’s hand and he seems to just be spaced out as if he is totally confused and overwhelmed about the whole situation to the point he probably can’t think about anything.
I think they need time to process this information and let it sink in and the psychologist probably should provide them with some written material on the options as AThompson suggested earlier. Then another meeting should occur with the parents separately and the patient separately and then all back together for a final decision and receive assent from the patient and consent from the parents on whatever their decision is.February 4, 2020 at 3:08 pm #17445
I have a great respect for how the psychologist approached this very difficult situation with the family. I appreciate that he acknowledged up front how difficult strange this must be for them. He did an excellent job of educating and informing while ensuring he showed empathy.
The parents, in particular the father seems to have quite a bit of frustration with feeling rushed to make a decision; conversations like these can easily go down the wrong path. The psychologist continued to assure the parents that there are still alternative options and ultimately as a family they are in control. He does a good job of being honest regarding the parameters the team is working with while ensuring the family is aware that deciding on a particular plan right now is not necessary.
Processing for the family will be very important to this as well as making the most informed decision. It would be valuable to follow up with them over the next 24 hours as a courtesy to provide additional emotional support.February 4, 2020 at 4:35 pm #17447
I agree with everyone’s reactions here. Poor Jake looked frightened and withdrawn at the outset of the discussion, and the psychologist was warm and gentle with bringing him into the discussion through psychoeducation and directing information to him by name. This does seem like a family for whom it may be beneficial to split the child from the parents for further discussion at some point, just based on Dad’s overwhelm and reactivity in the meeting, and potentially also because of the child’s closeness with his mother (if she was interested in pursuing fertility options, a child may be interested in appeasing her/allowing her to make decisions for him even though he looked more unsure). The psychologist’s approach was touching and I enjoyed the video. I also thought the didactic in this module was accessible and had important psychosocial content.February 5, 2020 at 5:34 pm #17463
The psychologist’s engagement was so warm and nonjudgemental. He did an excellent job of defusing the father’s sense of being rushed or pushed into a particular decision. It’s common in oncology to hear patients and families focus on being moved too quickly or too slowly. Emphasizing the value of finding personal peace with a decision was perfect. At the same time, he persevered with education and attempts to engage the family. I was hoping he might check out whether the patient understood all the terminology – did the patient understand what was meant by “fertility” and even “testis”. Without hearing anything from the patient or the mother, it was hard to gauge where they were in their comprehension and the meaning of the discussion. (The actors, by the way, are terrific. Very true-to-life.) I don’t know how valuable anything in writing would be in terms of education, but I think that brief (maybe 15 minute) meetings with the patient alone, the parents alone, then perhaps a longer one together would be useful. Even if there was just a break for lunch. It’s hard to absorb so much about a sensitive topic at once!
A group or peer counselors also sounds useful at this point.February 6, 2020 at 1:48 pm #17467
I agree with everyone’s input on this post. I think the psychologist did a great job explaining things and I liked that he first started out by asking them what they were told and what they know about fertility preservation. It is important to asses the patient and family’s knowledge and understanding regarding fertility and sexual health in the oncology setting. The psychologist reassured them that there is no right or wrong decision and defined the goals of the conversation and I think that is absolutely essential when having these types of conversations with patients and their family. Overall a great video clip.February 10, 2020 at 1:25 pm #17487
I also agree with the comments on this post. The psychologist did a great job meeting the family where they were at. The father in this video was quick to share how overwhelmed he was feeling and I thought the psychologist did a great job defining terms and the process. I also agree that written materials would be a helpful addition to this conversation. Depending on age, I think it would also be important to have discussions with both parents and AYA individually. This would allow the AYA to have a voice and share his/her thoughts on fertility preservation.February 11, 2020 at 1:05 pm #17502
I agree with comments. This can be a very difficult discussion to have. However, my concern with comments about speaking with patient alone is his dx of brain tumor(no reference to his current condition) and potential for inability to comprehend information. It would have been great if the psychologist request that patient/family repeat what he discussed. Written materials? Our facility gives so much written material in the beginning. I wonder if additional written material would be overwhelming. Visual Aids maybe?February 14, 2020 at 11:25 am #17532
I liked that he asked them to tell him where they were at. I feel like the dad really dominated the conversation. I wish I could have heard where all go them where at.February 20, 2020 at 3:39 pm #17598
I agree with everyone’s discussions about additional materials for follow-up. Ideally, both handouts and a face-to-face follow-up would be great, but we all know how busy it can be in the context of a new diagnosis and there may not be time for that. We have handouts about the fertility preservation options that families and patients are given so they do have written material to refer back to. For AYA patients, online resources may also be very helpful.February 20, 2020 at 11:25 pm #17601James KloskyModerator
For all 4 of the videos documenting this psychologist’s session with the family (1: family orientation to fertility preservation, 2: Adolescent only encounter, 3: Parents only encounter, and 4: Family wrap up) check out the “My Training Page” tab at the top of this page, and then go to “Patient Provider videos.” The first 4 videos on the page show the whole session.February 26, 2020 at 11:32 pm #17662
Coming late to the discussion…I agree with the previous comments made. I especially appreciated that in his individual video, Dr. Klosky discussed the importance of considering diversity elements in the decision making process and the inherent biases that we all have as human,s providers included. From a cultural competency standpoint, I tend to use the Pamela Hays ADDRESSING model as it addresses various aspects of diversity (age, disability, religion, race/ethnicity, sociodem status, etc) that can all potentially influence how a patient/family might respond to this type of difficult situation. In the family video, I really appreciated the modeling of a psychologist providing an overview of how chemo works then narrowing it down to specifically how it impacts fertility. A great way of gently providing the rationale for the discussion about fertility preservation.
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