Factors associated with employment status among mothers of survivors of childhood cancer: a cross-sectional study.

PURPOSE: To identify the factors associated with employment status among mothers of childhood cancer survivors (CCSs). METHODS: We conducted a questionnaire survey on mothers of survivors of childhood cancer to clarify practical factors such as care demands, psychological factors such as motivation to work, and support. After calculating descriptive statistics for all variables, binary logistic regression analysis was performed. RESULTS: Of 171 mothers, 129 (75.4%) were employed. The most common form of employment was non-regular (n = 83; 48.5%), including part-time, dispatched, and fixed-term workers. At the time of the survey, compared with nonworking mothers, working mothers tended to be more motivated to work and have lower scores for "Long-term Uncertainty" on the Parent Experience of Child Illness Scale. The results of the binary logistic regression analysis indicated that employment was related to higher motivation to work, the continuation of employment during treatment, more outpatient visits, and a higher amount of support. CONCLUSION: As employment of CCSs' mothers is associated with psychological factors such as motivation to work and long-term uncertainty, psychological support for CCSs' mothers might promote employment. In addition, because the continuation of employment during treatment affects the employment of mothers after the end of cancer treatment, a leave system that covers the treatment period for childhood cancer needs to be established.

Nursing Practice and Care Structure for Children and Their Families in Need of Pediatric Palliative and End-of-Life Care in Japan: A Nationwide Survey.

Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The research subjects were nurses working in hospitals; facilities for persons with severe physical, motor, and intellectual disabilities; and home-visit nursing stations. The practice ratio was calculated using a 79-item survey form, and factor analysis was conducted. A total of 113 facilities (acceptance rate: 26.5%) and 777 nurses (response rate: 44.6%) responded. Five items had a "Practicing" ratio of ≥90%. In factor analysis, 7 domains were identified: "preparing to face the time of death with the child and family," "ensuring child-centered care," "managing symptoms with the child and family," "considering and coordinating for the child's peaceful time of death," "understanding and respecting the culture of the child and family," "assessing the child and family as a whole person," and "performing self-reflection on an ethical issue." Nurses' practice of pediatric palliative care differs by practice domain. It is necessary to reflect on the educational programs under development to improve the quality of life of children and their families.

Development of a Proxy Quality-of-Life Rating Scale for the End-of-Life Care of Pediatric Cancer Patients Evaluated from a Nurse's Perspective.

Background: Assessing the quality of life (QoL) of children receiving end-of-life (EoL) care through evaluations by the children and their bereaved families is challenging; presently, there is no QoL assessment measure that is appropriate for use in pediatric EoL and/or palliative care. Objective: To develop and test a proxy rating scale (the "Good Death Inventory for Pediatrics," GDI-P) for the QoL of pediatric cancer patients receiving EoL care, evaluated from the nurse's perspective, as well as a short version of the scale. Design, Setting, and Measurements: The GDI-P was developed based on previous studies. After initial testing, it was distributed to hospitals across Japan, where nurses in charge of patients with childhood cancer receiving EoL care used the scale to evaluate a patient retrospectively. To examine inter-rater reliability, we encouraged two nurses to evaluate one patient. The GDI-P was modified on the basis of the responses, and the validity and reliability were measured. Results: In total, 85 questionnaires were completed, including 32 pairs of responses from two nurses evaluating one patient. In addition, 47 retest questionnaires were returned. The final, modified GDI-P comprised eight factors with 22 items and showed high convergent and discriminant validity, scaling success rates for each item and factor, and Cronbach's α values. A short version of GDI-P was prepared, comprising eight representative items. Conclusions: The final GDI-P was confirmed to have adequate reliability and validity. The QoL scale developed in this study should provide useful outcome evaluation criteria for assessing the EoL care of pediatric cancer patients.

Pediatric Cancer Patients' Important End-of-Life Issues, Including Quality of Life: A Survey of Pediatric Oncologists and Nurses in Japan.

BACKGROUND: Research into the key themes and concepts of quality of life (QOL) relevant to the end-of-life (EOL) care of pediatric cancer patients in the Japanese context is imperative. OBJECTIVE: This study aimed at identifying the key items and constructive concepts of QOL at EOL of pediatric cancer patients. DESIGN: In 2015, pediatricians and nurses were recruited from 163 pediatric oncology treatment facilities in Japan. The questionnaire was developed on the basis of a previous qualitative study. Items that were rated as "very important" or "important" by at least 80% of the respondents were considered as "common and important" QOL items. Exploratory factor analysis was performed to conceptualize QOL of the pediatric cancer patients during EOL care. RESULTS: A total of 157 pediatricians and 270 nurses participated in this study. Fifty-five items were refined to 35 "common and important" QOL items. On factor analysis, 12 domains (containing 29 items) were identified: playing and learning; fulfilling wishes; spending time with family; receiving relief from physical and psychological suffering; making many wonderful memories; having a good relationship with the medical staff; having a peaceful death in the presence of family; spending time with a minimum of medical treatment; living one's life as usual; spending time in a calm hospital environment; being oneself; and having a close family. CONCLUSIONS: Although the respondents in this study were medical care providers rather than the patients or their family members, findings should help medical staff provide better palliative care to Japanese pediatric cancer patients.