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Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.

BACKGROUND: Parents of adolescents and young adults (AYAs) with serious illness experience enormous stress as they navigate their child’s illness. In this study, we aimed to elucidate AYA parental perspectives on the advanced cancer experience, including what parents find challenging and their sources of strength. METHODS: Parents of AYAs aged 14 to 24 years old being treated for recurrent or refractory advanced cancer at a large academic center completed demographic surveys and 1:1 semi-structured interviews between December 2017 and July 2018. Conventional content analysis was used by 2 coders to analyze transcriptions, with a third reviewer adjudicating. Thematic networks analysis was then used to extrapolate basic and organizing themes. RESULTS: A total of 22 parents participated. The majority were female, non-Hispanic, and married; 23% (n = 5) were from racial minority groups. We identified 3 organizing themes related to navigating parents’ experiences: (1) what we do to love our child, (2) what challenges us, and (3) how we keep our heart focused on what matters most. Despite substantial uncertainty about their child’s future, parents endorsed growth and gratitude as they focused on the ways they showed love for their child during this difficult time. CONCLUSIONS: Parents of AYAs with advanced cancer experience many parenting challenges, elucidating some of the vulnerabilities and magnifying the sources of strength among parents of children transitioning to adulthood during serious illness. This research has important implications for how we build programs that support and sustain parents’ well-being during their child’s serious illness.

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