Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

Multiple Endocrine Neoplasia type 2 (MEN2) is a genetic cancer syndrome for which there are limited data pertaining to the quality of life and psychosocial experiences of persons affected. Medullary thyroid carcinoma (MTC) is a rare disease of the thyroid gland often associated with MEN2. MTC often progresses slowly and may present with a myriad of physical symptoms including hair loss, sleep disturbance, fatigue, weight changes, heart palpitations, and constipation or diarrhea. Like other cancers or rare, inheritable illnesses, patients with MEN2 and MTC may be at risk for psychosocial stressors. The current, cross-sectional study administered a structured psychosocial interview and The Distress Thermometer/Problem Checklist to 63 patients with MEN2 and MTC and their caregivers. Despite reports of overall good health, 46% of adults and 44% of youth reported that pain interferes with their daily life; 53% of adults and 59% of youth reported that pain interferes with their mood. Pediatric patients frequently reported experiencing attention challenges (50%) and difficulty concentrating (65%). Parents reported that mood shifts and becoming upset easily were the most prevalent concerns for their children. The most frequent need for services included education about MTC, treatment and research participation, and the opportunity to meet others with MTC.

Background: The provision of bereavement support for parents is a recognized tenet of end of life (EoL) care, yet there is a knowledge gap concerning how and when health care providers can best provide this. To better understand bereaved parents’ perspectives, the present study examined what supportive interventions parents reported to be available, utilized, and found helpful based on their experiences at the medical institution where their child received care. They also identified the types of supportive interventions they felt were needed both before and after the death of their child and when along the cancer trajectory parents felt these services should be made available. Methods: Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey through a closed social media (Facebook) group. The survey was developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates. The survey was designed to gather retrospective reports of EoL support services offered and utilized. Descriptive information about reports of services available, services utilized, and services found to be helpful is reported. χ ² analyses were utilized to compare availability, utilization, and helpfulness by cancer type and child's age at death. Results: One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. Most reported their care institutions to have availability of palliative care support (67.4%, n = 91), spiritual/religious support (n = 83, 61.9%), resource materials (n = 82, 60.7%), counseling for the child (n = 82, 59.0%), and advance care planning (n = 65, 50.0%). All parents who utilized assistance with food/beverages at bedside, funeral planning and legacy building found it to be helpful, with other services (ie, palliative care, advance care planning, counseling for child/family, among others) also rated as highly helpful (>75%). Most bereaved parents perceived a need for supportive interventions, particularly during the EoL experience, whereas about half reported a desire for services after the death of their child. Bereaved parents felt these services should be offered to the entire family, including the patient. Some services (eg, supportive counseling for parents, child, and siblings) were desired from diagnosis onward, whereas others (eg, advance care planning, discussions of location of death) were preferred if the disease was not responsive to treatment. Thematic analysis of open-ended responses of services that would have been helpful elicited a desire for treatment navigation, ongoing support/communication from the healthcare team, financial help, support for the child (both counseling and integrative therapies), meals, counseling (for the family and those impacted by the child's death in their community), legacy options, connection with other families, information about tissue donation, and grief support after the death of their child. Conclusions: Most bereaved parents utilized the supportive interventions provided to them by the healthcare team during their child's EoL care and reported finding them helpful. Additional services, not offered or available, were also desired, particularly during the EoL experience, and after the death of their child. These findings are consistent with guidance from evidence-based standards of care which promote early integration of palliative care and continuity of care after the death of a child. Provision of a variety of services may be beneficial to families both before and after their child's death, but additional research is needed to inform timing and how to best tailor these services to the family.

Neurofibromatosis type 1 (NF1) is a genetic condition affecting 1 in 3000 individuals. Having a child with a chronic illness can introduce both practical and emotional challenges to a parental relationship. This cross-sectional study was administered to 50 parents of children with NF1, diagnosed between the ages of 1–24. Each participant was provided a 50-item self-report survey to complete during an inpatient or outpatient visit. The survey gathered information on the participants’ views of the spouse/partner relationship, coping mechanisms, and elements that supported emotional connections. While the majority of parental relationships were reported to remain strong, the mean relationship quality was perceived to have decreased compared to prior to the child’s diagnosis. Compassionate and open communication, shared perspective, having time alone with their partner outside of medical situations, and dyadic coping were identified as strategies that could strengthen the relationship. The identified stressors to the parental relationship during the NF1 illness trajectory can inform interventions and help guide development of a couple’s intervention. The National Cancer Institute, NIH Institutional Review Board approved this study (12-C-0206).