Fertility preservation medical history
Family medical history
Sexual transmitted infections
Partners – male, female, both
Age at intercourse
Number of partners
Type of sex – oral, vaginal, anal
Puberty history – females
Age menstruating began
Frequency and duration of cycles
Puberty history – males
Nocturnal emissions – age
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Counseling Children and Adolescents
Information families provide their children on the topics of sexuality and reproductive biology varies widely . Healthcare providers counseling families on the topic of fertility preservation cannot assume either the parents or the patient possess an understanding of basic reproductive biology. Therefore, any discussion on fertility preservation must include an explanation of puberty, reproductive health, pregnancy, menopause, and hormone regulation. Information provided to the patient should be developmentally appropriate and determined by the patient’s age, cognitive ability to grasp the topic, and maturity level. Initiation of fertility preservation or reproductive health following cancer treatment is more successful if a healthcare provider begins the discussion . Open-ended questions such as “have you thought about being a mom or dad in the future” provide the patient the opportunity to express a vision of their future in a developmentally appropriate manner. Many pediatric hospitals employ child life therapists who are able to assist both the parents and the healthcare team to use developmentally appropriate language to explain reproduction and any FP procedures the patient might undergo.
There is never a “good time” to discuss the risk of infertility with a cancer patient, but waiting until after the initiation of treatment is not optimal and may mean FP is no longer feasible. The concepts of patient autonomy and informed decision making require the patient and family to be provided with the information needed to determine if fertility preservation is a viable option as early as possible. Armuand et al.  report adult female cancer patients not provided information on FP options described a loss of control and report a greater sense of loss than male cancer patients. The researchers also state healthcare providers’ assumptions about a patient’s desire for FP rob the patient of autonomy.
During the course of the diagnosis and treatment discussions, the healthcare team reviews all potential side effects of treatment. A fertility preservation counselor or patient navigator is often the best professional to provide the patient and family information on FP options as well as reproductive health during and following treatment. The impact of treatment on reproductive health and sexuality should also be included in the discussion. For example, a male patient at risk for retrograde ejaculation due to a reproperitoneal lymph node dissection should be informed of these side effects prior to surgery. Even patients whose treatment plan confers a low risk of infertility should be informed that treatment is unlikely to impact future reproductive health.
Parents of young child may prefer to discuss FP without their young child present and may seek guidance from the healthcare team on how and when to begin the discussion with their child. Ask the parents if they wish to discuss FP with their child or if a discussion led by the healthcare team is desired. Children can feel untethered if the adults around them are not providing information in an attempt to protect the child; therefore, it is important for the adults to structure the discussion, allow the patient to express concerns and fears, and have the parents and healthcare team respond to those concerns and fears. How adults respond to the child is more important than what is said . A pediatric social worker or child life specialist may be helpful in providing the patient developmentally appropriate information.
It is best to begin with a basic explanation of reproduction, given in the patient and family’s native language. Reassuring the patient that puberty and reproduction are a normal part of the human experience is vital. Quizzing the child is counterproductive and may inhibit any discussion on FP. Allowing the patient and family to ask questions is important, as well as giving them time to process the information provided. Patients may not be familiar with medical terms such as masturbation, oocyte, or testicles, requiring the healthcare provider to use slang terms to provide context to the discussion. Medications, stress, cognitive delays, language, fatigue, and cultural barriers may impact comprehension of the topic. The complex nature of the topic, as well as the seriousness of the cancer diagnosis, may necessitate several meetings with the family to adequately cover the topic. Do not assume that a child who is silent during the discussion is not paying attention or is not curious about the topic – embarrassment, fear, or anxiety may prevent him or her from engaging in a dialogue. Conversely, do not allow a parent to dominate the conversation or speak for the child (Table 17.1).
Guidelines for counseling families
Guidelines for counseling families
1. Set the environment to allow for a private discussion
2. Lead the discussion
3. Do not assume the patient or family has knowledge of reproductive biology
4. Allow time to process information and formulate questions
5. Do not allow the parent to speak for the child
6. Do not assume a patient’s silence means a lack of interest in the topic
Adolescence is often divided into three distinct phases of development. Therefore, counseling adolescents on reproductive health and FP is quite different than younger children. Early adolescence is from 11 to 13 years, middle adolescence is 14–16 years, and then late adolescence is 17–21 years of age . Cognitive, emotional, and developmental needs of each stage of adolescent development influence how sensitive information such as FP is communicated with the patient.
Physical development does not correspond to the emotional and cognitive changes occurring during this time. A physically mature 14-year-old may be a concrete thinker, not quite able to grasp the significance of the decision to proceed with FP. If desired, the adolescent should be given the opportunity to discuss reproductive health and FP without parents present. To avoid any conflict between the adolescent and parents, the healthcare provider asks the adolescent if he or she wishes to have a parent or both parents present during the FP consult visit. This establishes that the adolescent is the patient and not the parent(s) (Table 17.2).
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