Maternal Caregiving Demands for Adolescent and Young Adult Survivors of Pediatric Brain Tumors.

PURPOSE/OBJECTIVES: To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families. DESIGN: A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life. SETTING: Home interviews. SAMPLE: A purposive sample of 46 maternal caregivers was selected from participants in the larger study. METHODS: Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai's framework describing the components of primary caregiving. MAIN RESEARCH VARIABLES: Caregiving demands. FINDINGS: Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews. CONCLUSIONS: Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified. IMPLICATIONS FOR NURSING: 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.

Health-related quality of life of adolescent and young adult survivors of childhood brain tumors.

OBJECTIVE: Our aim was 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-report and caregiver-proxy report of physical and emotional HRQOL. METHODS: Mothers (N = 186) and their survivors living at home (N = 126) completed self-report 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-report and caregiver-proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy report of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQOL. 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-report and caregiver-proxy report of physical and emotional HRQOL for these adolescent and young adult 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.

Fertility preservation for patients with cancer.

A key concern for young patients with cancer and survivors is the desire to parent a child. With infertility being a well-established long-term effect of many oncologic regimens, patients who want to have children often become distressed when faced with the possibility of losing their fertility. Several organizations have recommended that oncology professionals discuss options for fertility preservation when planning treatment; however, this does not routinely occur. Oncology nurses play a significant role in filling this practice gap by identifying patients who are interested in future parenting and ensuring they get the information and referrals they need to decide whether to pursue fertility preservation. This article outlines the available options, challenges in discussing fertility, and strategies to incorporate fertility education into practice.

Self-reported health problems of young adults in clinical settings: survivors of childhood cancer and healthy controls.

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.