Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them to FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (Family-Focused; Somewhat Family-Focused; Somewhat Condition-Focused; and Condition-Focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (HRQL [self- and mother proxy report]), cancer-related variables (treatment intensity; medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors’ engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology thereby taking into account the complex intersection of the condition, the family, and condition management.

Background Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents’ ideas about what constitutes a “good death” in a pediatric intensive care unit vary widely. Objective To synthesize parents’ perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents. Methods A concept analysis was conducted of parents’ views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child’s death in the inpatient setting were identified through database searches. Results The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept. Conclusions Conceptual knowledge of what constitutes a good death from a parent’s perspective may allow pediatric nurses to care for dying children in a way that promotes parents’ coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.

Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.

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