Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants' care at EOL in the NICU between 3 months and 5 years of their infant's death (M ϭ 38.10 months, SD ϭ 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents' satisfaction with their involvement in their infants' care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents' experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.

This study was funded by the Research Institute at Nationwide Children's Hospital (V.L.) and Dutch Cancer Society (RUG2009-4442, M.A.T.). All authors have no conflict of interest to declare.

Communication plays an important role, particularly for children with advanced cancer. Additional research with families affected by life-limiting conditions is needed.

BACKGROUND Risk factors for impairment in psychosexual development and satisfaction among adult survivors of childhood cancer are poorly understood. The authors compared psychosexual outcomes between survivors and healthy controls, and tested whether at‐risk survivors can be identified by 1) treatment neurotoxicity or 2) diagnosis. METHODS A total of 144 young adult survivors of childhood cancer and 144 matched controls completed questionnaires regarding psychosexual development, sexual satisfaction, and satisfaction with relationship status. Survivors were aged 20 to 40 years and were 5 to 34 years after diagnosis. Using medical chart data, survivors were divided into non‐neurotoxic (48 survivors), low‐dose (36 survivors), and high‐dose (58 survivors) neurotoxic treatment groups. RESULTS Apart from having fewer lifetime sex partners, survivors did not appear to differ from controls. However, survivors of brain tumors and any survivor who received high‐dose neurotoxic treatment reported the lowest rates of achieving milestones of psychosexual development, whereas sexual and relationship status satisfaction were found to be related to relationship status. Neurotoxic treatment intensity further distinguished between survivors of brain tumors with and without psychosexual impairment. CONCLUSIONS The intensity of neurotoxic treatment may be a valuable indicator of risk for psychosexual impairment relative to diagnosis alone. Health care providers should assess romantic/sexual problems among survivors at risk and make referrals if needed. Cancer 2017;123:1869–1876. © 2017 American Cancer Society.