Objective Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. Method Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14–40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. Results The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence. Conclusions For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

Background To date there are few studies that examine the perspectives of older survivors of childhood brain tumors who are living with their families in terms of their sense of self and their role in their families. Objective To describe how adolescent and young adult survivors (AYA) of childhood brain tumors describe their HRQOL, that is their physical, emotional, and social functioning. Methods This qualitative descriptive study included a purposive sample of 41 AYA survivors of a childhood brain tumor who live with their families. Home interviews were conducted using a semi-structured interview guide. Directed content analytic techniques were used to analyze data using HRQOL as a framework. Results This group of brain tumor survivors described their everyday lives in terms of their physical health, neurocognitive functioning, emotional health, social functioning, and self-care abilities. Overall, survivors struggle for normalcy in the face of changed functioning due to their cancer and the (late) effects of their treatment. Conclusions Neurocognitive issues seemed most compelling in the narratives. The importance of families went beyond the resources, structure, and support for functioning. Their families provided the recognition that they were important beings and their existence mattered to someone. Implications for Practice The value and complexity of care coordination was highlighted by the multifaceted needs of the survivors. Advocacy for appropriate and timely educational, vocational, and social support is critical as part of comprehensive cancer survivorship care.

Objective To expand research on predictors of health-related quality of life (HRQOL) for adolescent and young adult survivors of childhood brain tumors who are not living independently by evaluating the mediating role of family functioning in the association of disease severity/treatment late effects with survivor self- and caregiver-proxy report of physical and emotional HRQOL. Methods Mothers (N = 186), and their survivors living at home (N = 126), completed self- and caregiver-proxy report of physical and emotional HRQOL. Mothers completed family functioning measures of general family functioning, caregiving demands, and caregiver distress. Medical file review and caregiver report were used to evaluate disease severity/treatment late effects. Results Using Structural Equation Models, family functioning was adjusted for sociodemographic factors. Disease severity/treatment late effects had significant direct effects on self- and caregiver proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQO. Model-fit indices suggested good fit of the models, but the mediation effect of family functioning was not supported. Conclusions Disease severity/treatment late effects explained self- and caregiver-proxy report of physical and emotional HRQOL for these AYA survivors of childhood brain tumors. Family functioning was implicated as an important factor for caregiver-proxy report only. To enhance physical and emotional HRQOL, findings underscore the importance of coordinated, multidisciplinary follow-up care for the survivors who are not living independently and their families to address treatment late effects and support family management.

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.

Our data support that sperm banking pubertal males prior to the initiation of therapy is feasible. While there were differences in quality of semen parameters across age and diagnostic groups, most males, regardless of age or diagnosis, had adequate specimens for cryopreservation.

The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health.

Purpose: Increasing numbers of childhood cancer survivors are being seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study.Methods: 156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age, 20 years) completed the Health Knowledge Inventory, a checklist of 35 health problems.Results: Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems; P < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female sex related to report of Organic/Major problems and Constitutional/Other problems for the controls. Although at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal, and weight problems, survivors endorsed growth, thyroid, kidney, immunologic, heart, and fertility problems 4-fold over controls.Conclusions: Cancer survivors endorse significantly more health problems than do healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young-adult cancer survivors. (J Am Board Fam Med 2010;23:306 -314.)

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.