BackgroundMost parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end‐of‐life communication and guidance for parents.MethodsCaregivers of a child who died from cancer were invited to complete a 46‐item survey through a closed social media (Facebook) group (“Parents who lost children to cancer”). In four months’ time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi‐square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.ResultsApproximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.ConclusionsThrough quantitative and open‐ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.

Objectives To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). Methods A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. Results At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. Significance of results Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Adolescent and young adults (AYAs) with chronic illnesses cope with complex issues that require unique psychological support and healthcare services to reduce psychosocial difficulties, improve disease management, and facilitate positive transitions to adult care. Engaging patients and caregivers can help providers understand the specific needs of this population and identify the perceived areas of support. The purpose of this quality improvement initiative is to assess the needs of AYAs with chronic medical conditions at a large government research hospital. Eighty-nine AYA patients (age = 23.5 years; range 13–34) with neurofibromatosis type 1, cancer, primary immunodeficiencies, or sickle cell disease, and a sample of caregivers (n = 37, age = 52 years; range: 41–65), completed an anonymized survey that assessed their preferences for a wide range of informational and service-related needs. The results indicate an overwhelming desire for information about general health and wellbeing and disease-specific medical knowledge. The most endorsed item was the need for more information about an individual’s medical condition (72%), which was a primary concern across disease, racial, and gender groups. Demographic and disease-specific needs were also identified. Thus, providing information to AYA patients and caregivers is a critical and largely unmet component of care, which requires the development and implementation of targeted educational and psychosocial interventions.

Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7-21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child's distress but is limited by not assessing whether these symptoms interfere with the child's daily life.

Objectives: To identify events during a child’s cancer trajectory when parents perceived their marriage/partnership to be most strengthened and/or challenged. Research approach: Using a cross sectional qualitative design, participants completed a self-administered questionnaire addressing changes in their relationship during their child’s cancer trajectory, including events perceived to strengthen/challenge their relationship, and recommendations for other parents. Participants: 192 parents of pediatric oncology patients across 3 institutions. Data were analyzed using qualitative content analysis. Findings: Themes included relationship-specific, illness experience-related, and external supports/stressors that impacted the relationship. Dyadic strategies, empathic communication and supportive behaviors strengthened the couple’s relationship, whereas physical and emotional distance most commonly challenged the relationship. Recommendations to other parents included open communication, couple’s connectedness, and use of external supports. Interpretation: Offering psychosocial support and helping parents anticipate when their relationship can be strengthened/challenged can be an important part of ongoing care. Implications for psychosocial providers: Teaching communication and dyadic coping strategies can help parents manage stress and build cohesion.

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Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and post-operative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.

Objectives Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. Methods Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. Results Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. Significance of results Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.