Maureen Reilly

Sperm Banking for Adolescent and Young Adult Cancer Patients: Sperm Quality, Patient, and Parent Perspectives

Infertility is often a complication for adolescent and young adult males who receive cancer therapy, a problem that might be averted through using cryopreserved sperm. We aim to evaluate feasibility of offering newly diagnosed patients the opportunity to bank sperm and, to determine the beliefs and decision‐making processes of patients and their parents who considered sperm banking.

Sperm Banking for Adolescents With Cancer

Recent advances in diagnostic and therapeutic methods in pediatric oncology have led to greater survival rates in children with malignancies. However, major long-term complications can occur that limit the quality of survival, infertility being one of them. Chemotherapy, radiation treatment, surgery, and combinations of these treatments have been implicated in causing infertility, with males being especially sensitive to therapy. Cryopreservation of semen, or sperm banking, is an easy, widely available means to preserve fertility for adolescent and young adult males with cancer. In this article, the pertinent literature is reviewed, and a sperm-banking program is described. Recommendations are offered for institutions attempting to develop a successful program, and the nurses role in education and facilitation is discussed.

Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

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.

Identifying the Educational Needs of Parents at the Completion of Their Child’s Cancer Therapy

For parents of children with cancer, the experience of completing treatment can be a time of celebration and hope as well as anxiety and fear. Previous research has identified the time immediately following completion of therapy as one of the most difficult and anxiety producing periods in parents’ trajectory of cancer treatment. A gap in knowledge exists to guide nursing practice regarding parents’ educational needs. The purpose of this study was to (a) determine the educational needs of parents as their children completed cancer treatment and (b) assess the feasibility of measuring parental educational needs, anxiety, and family management styles as treatment ends. The results support previous findings that parents are anxious at the end of therapy. Fear of relapse was their primary concern. Although parents desire education at the end of therapy, attention to parental readiness to learn and the individual needs of the patient and family must be considered. In the feasibility portion of this study, parents were able to complete the questionnaires with no negative feedback provided.

An innovative approach to the care of patients on phase I and phase II clinical trials: the role of the experimental therapeutics nurse.

The tremendous strides in survival rates for childhood malignancies in large part can be attributed to the clinical trial mechanism. New and innovative therapies are being developed in the laboratory in an attempt to find a cure for those children who have relapsed or have refractory disease. Phase I and phase II clinical trials move this science from the laboratory to the patient’s bedside. With increasing frequency, the oncology staff nurse may be managing the care of a patient receiving a phase I or phase II study drug. Administration of these agents goes beyond what is familiar, requires specialized knowledge, and demands a skill set beyond what is required for standard oncology care. At The Children’s Hospital of Philadelphia, the role of the experimental therapeutics nurse was created in an effort to improve the process for identification, treatment, and follow-up of patients receiving these therapies. The broader role of nursing in clinical trials, the multidisciplinary challenges of experimental therapies, and the development of an innovative approach to caring for patients on phase I/II studies are discussed.

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

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.

Development of reference values for the Functional Mobility Assessment.

Purpose: To obtain reference values for healthy participants performing the Functional Mobility Assessment (FMA). The FMA is a reliable and valid tool used to examine functional abilities subjectively and objectively in patients with lower-extremity sarcoma in all components of the International Classification of Functioning, Disability, and Health model (body function, activity, and participation). Methods: Children, adolescents, and young adults who were healthy, representing a sample of convenience (n = 503; 260 females, age 10–21 years), participated in this study. Results: Means and standard deviations for all participants: Timed Up and Down Stairs 6.18 ± 0.8 seconds, Timed Up and Go 3.78 ± 0.6 seconds, 9-minute run/walk 4161 ± 893 feet, and the FMA total 59 ± 3. Conclusion: The reference values provided in this study will allow health care professionals to compare the functional abilities of children, adolescents, and young adults with lower extremity sarcoma to age- and gender-matched healthy peers when using the FMA.

Adolescent and Young Adult Survivors of Childhood Brain Tumors: Life After Treatment in Their Own Words.

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: The aim of this study was to describe how adolescent and young adult survivors of childhood brain tumors describe their health-related quality of life, that is, their physical, emotional, and social functioning. Methods: This qualitative descriptive study included a purposive sample of 41 adolescent and young adult survivors of a childhood brain tumor who live with their families. Home interviews were conducted using a semistructured interview guide. Directed content analytic techniques were used to analyze data using health-related quality of life 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 were 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.

Patterns of family management for adolescent and young adult brain tumor survivors

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 with 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 (health-related quality of life [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.