Yueh-Chih Chen

Quality of life among primary caregivers of Taiwanese children with brain tumor.

This study evaluated the quality of life among primary caregivers of Taiwanese children with brain tumors and examined the factors associated with their quality of life. Data were obtained from the Impact of Childhood Cancer on the Chinese Family survey conducted by the Taiwan Childhood Cancer Foundation in 2001. This analysis included 30 families. Quality of life among primary caregivers was measured by the World Health Organization Questionnaire on Quality of Life: BREF-Taiwan version. Quality-of-life scores for various subgroups were compared using the Mann-Whitney U test or the Kruskal-Wallis test. The scores in the physical health and psychological domains for caregivers of children with brain tumors were lower than the norm scores for healthy adults. Caregivers of boys had higher scores in social relationships. Caregivers of children within 5 years of the brain tumor diagnosis had higher scores in the physical health domain. The child’s treatment stage was associated with caregiver scores in the physical health and psychological domains. The caregiver’s psychological domain was negatively affected by a low education level. The health status of caregivers was positively associated with their quality of life in physical health, psychological status, social relationships, and environment domains. The lower quality of life among caregivers indicates the need for promoting an awareness in healthcare providers of the impact that having a child with brain tumor has on the quality of life. Family-centered interventions are implicated. Healthcare providers should elicit information regarding the caregiver’s perceived physical health and intervene early. This may help to improve the quality of life among caregivers of children with brain tumors.

Pediatric End-of-Life Care for Taiwanese Children Who Died As a Result of Cancer From 2001 Through 2006

PURPOSE Patterns of aggressive end-of-life (EOL) care have not been extensively explored in a pediatric cancer population, especially outside Western countries. The purpose of this population-based study was to examine trends in aggressive pediatric EOL cancer care in Taiwan. METHODS Retrospective cohort study that used administrative data among 1,208 pediatric cancer decedents from 2001 through 2006. RESULTS Taiwanese pediatric cancer patients who died in 2001 through 2006 received aggressive EOL care. The majority of these patients in their last month of life continued to receive chemotherapy (52.5%), used intensive care (57.0%), underwent intubation (40.9%), underwent mechanical ventilation (48.2%), or spent greater than 14 days (69.5%) in hospital, and they died in an acute care hospital (78.8%). Of these pediatric cancer patients, one in four received cardiopulmonary resuscitation in the month before they died, and only 7.2% received hospice care. Among those who received hospice care, 21.8% started such care within the last 3 days of life. This pattern of aggressive EOL care did not change over the study period except for significantly decreased intubation in the last month of life. CONCLUSION Continued chemotherapy and heavy use of life-sustaining treatments in the last month of life coupled with lack of hospice care to support Taiwanese pediatric cancer patients dying at home may lead to multiple unplanned health care encounters, prolonged hospitalization at EOL, and eventual death in an acute care hospital for the majority of these patients. Future research should design interventions that enable Taiwanese pediatric cancer patients to receive EOL care that best meets the individual or the parental needs and preferences.

An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease.

Background:Congenital heart disease (CGHD) can be considered a chronic disease for many patients. To adopt a healthy lifestyle and to avoid complications, patients with CGHD and their parents need to have good knowledge of the heart defect and its consequences. Objective:The aims of this study were to evaluate patient and parental knowledge of CGHD and to explore the related factors of their respective disease knowledge. Methods:This study included 116 dyads of adolescents with CGHD (43.1% male adolescents; aged 12–18 years) and one of their parents (79.3% mothers; median age, 46 years). All participants completed the Leuven Knowledge Questionnaire for Congenital Heart Disease, and then we calculated a correct rate score to determine the overall disease knowledge of the respondents. Results:The correct rate score was 38.8% for adolescents with CGHD and 51.4% for parents (t = 7.69; P < .001). The only determinant of knowledge in parents was their educational level (standardized estimate = 6.160, P < .001). In adolescents, knowledge was determined by age (standardized estimate = 2.242, P = .002) and parental knowledge (standardized estimate = 0.311, P < .001). Conclusions:Although parents have significantly greater disease knowledge than their children do, the level of knowledge in both parents and adolescents is suboptimal. Because parents’ knowledge influenced their adolescents’ knowledge, educational interventions should target both adolescent patients and parents. Transition programs can play a pivotal role in this respect.

Games of Lives in Surviving Childhood Brain Tumors

The purpose of this phenomenological study was to describe the commonality of the lived experience of adolescent and young adult survivors (AYAS) of brain tumors in Taiwan from a sociocultural perspective. Seven AYAS aged 13 to 22 years, who had survived 5 to 10 years from the time of diagnosis, participated in this study. In consideration of their emotional duress, each participant was interviewed only once. The data revealed an essential structure: the game of life. The essential structure included six themes as follows: (a) no longer playing well, (b) wandering on the outer edges of social life, (c) helplessly struggling with role obligations, (d) rationally regulating the meaning of surviving, (e) winning a new social face, and (f) mastering the game of life. The findings suggest how nurses might help AYAS to succeed in psychosocial adjustment.

Clinical applicability of the World Health Organization Quality of Life Scale Brief Version (WHOQOL‐BREF) to mothers of children with asthma in Taiwan

AIMS This study examined the clinical applicability of the World Health Organization Quality of Life Scale brief version (WHOQOL-BREF) to mothers of children with asthma in Taiwan. BACKGROUND The WHOQOL-BREF scale has been culturally adapted for Taiwan and applied to a variety of ill and healthy subjects in hospitals and the community and to the general population in the 2001 National Health Interview Survey in Taiwan. Its application to explore the QOL of mothers of children with asthma in Taiwan allows future cross-population comparisons. DESIGN A cross-sectional survey. METHODS Internal consistency, test-retest reliability; content validity, criterion-related validity and discriminant validity were assessed. A total of 229 mothers participated in the study. RESULTS The WHOQOL-BREF showed acceptable psychometric properties. Internal consistency of 0.63-0.84, content validity r = 0.39-0.65 (p < 0.01) and criterion-related validity r = 0.28-0.65 (p < 0.05) were reported. Discriminant validity was also found, especially in the domain of physical health. Issues of QOL for mothers, especially in the realm of physical health need more support and attention from health professionals. CONCLUSIONS This study supports the clinical applicability of the WHOQOL-BREF scale as a measure of QOL of mothers of children with asthma. Future studies to compare the QOL measured by WHOQOL-BREF in female caregivers of children with other chronic health conditions are suggested. RELEVANCE TO CLINICAL PRACTICE Our findings show that mothers are hardly ever free from the strains of the daily-care of an asthmatic and bear the uncertainties for the unending illness. The health care team is responsible for providing collaborative care approaches in hospital, home and school health care settings for children with asthma and their mothers.

Quality of Life After Hematopoietic Stem Cell Transplantation in Pediatric Survivors: Comparison With Healthy Controls and Risk Factors.

Background: Hematopoietic stem cell transplantation has prolonged life for children with life-threatening diseases. Quality of life is an essential outcome for evaluating the long-term effects of transplantation. Objective: The aims of this study were to compare the quality of life of children posttransplantation to that of healthy peers and explore the variables associated with the quality of life of posttransplant children. Methods: A cross-sectional study was conducted with 43 pediatric transplantation survivors and 43 age- and sex-matched healthy peers. Results: The mean age of the transplant group was 12.06 years. The mean time since transplant was 3.73 years. After covariate adjustment, there was no difference between posttransplant and healthy children in each domain and overall quality of life, except for physical functioning where the posttransplant children had lower scores than did the healthy group. Chronic graft-versus-host disease was found to be the primary factor associated with poor posttransplant overall quality of life and emotional and social functioning. Sociodemographic variables, symptom distress, and caregiver depression were not correlated with posttransplant quality of life. Conclusions: The quality of life of pediatric transplantation survivors was comparable to that of healthy peers. Implications for Practice: The finding that children after transplant may achieve quality of life similar to their healthy peers is important information for parents to consider as they consider treatment options. For those sick children who cannot regularly attend school, their emotional and social functioning should be closely monitored.

Exercise Behavior in Adolescents With Mild Congenital Heart Disease

Background and Research Objectives:Most children with congenital heart disease (CHD) are expected to survive to adolescence and adulthood owing to medical advances and care management. These adolescents need to be well informed about their exercise capacity and take greater personal responsibility for their exercise behavior as they mature. The aims of this study were to compare the amount and intensity of exercise engaged in by male and female adolescents with mild CHD while on summer vacation and during the academic semester and to determine the extent to which their exercise behavior met cardiologists’ recommendations, based on New York Heart Association functional classification. Participants and Methods:A repeated-measure design was used to evaluate exercise behavior in 126 adolescents 12 to 18 years old with mild CHD from the outpatient cardiology departments of 3 medical centers in Taiwan. Exercise, classified as mild, moderate, or vigorous, was evaluated during summer vacation and during the fall semester using a 7-day self-reported exercise log. Results and Conclusions:Patients engaged in significantly more mild and total exercise during summer vacation than they did during the fall semester. They also engaged in significantly less vigorous exercise during summer vacation than they did in the fall semester. Female respondents engaged in significantly less moderate (P = .019), vigorous (P < .001), and total (P = .015) exercise than did their male counterparts but showed no difference in mild exercise. During the summer and fall, nearly 50% of the adolescents followed their cardiologist’s recommendations for exercise. Adolescents with mild CHD engaged in more exercise during summer vacation but engaged in more vigorous exercise during the fall semester. Approximately one half did not follow the exercise intensity recommended by cardiologists. Inadequate exercise patterns may lead to cardiovascular complications. Planned interventions related to exercise instruction are needed for adolescents with CHD.

Maternal–foetal attachment during early pregnancy in Taiwanese women pregnant by in vitro fertilization

AIM The aim of this study was to investigate maternal-foetal attachment at 9, 12 and 20 weeks gestation and to identify factors that influenced maternal-foetal attachment in Taiwanese women who conceived by in vitro fertilization. BACKGROUND Development of maternal-foetal attachment is an important part of taking on the maternal role. However, evidence about maternal-foetal attachment after assisted conception is inconclusive. DESIGN A longitudinal design with repeated measures. METHODS A prospective, longitudinal design with repeated measures was used. Over an 18-month period in 2006-2008, a convenience sample of 160 women who conceived after undergoing successful in vitro fertilization were recruited from a major infertility care centre in Taiwan. Data were collected by self-reported measures, including: (1) Maternal-Foetal Attachment Scale; (2) Symptoms Checklist; (3) Pregnancy-related Anxiety Scale; (4) Social Support Apgar; (5) Chinese childbearing attitude Questionnaire; and (6) Awareness of Foetus Scale. The selected instruments to measure each variable were administered to participants at 9, 12 and 20 weeks gestation. RESULTS Maternal-foetal attachment increased as pregnancy progressed from 9 to 20 weeks gestation. General linear mixed model showed predictors of maternal-foetal attachment included Chinese childbearing attitude, awareness of the foetus, and social support. CONCLUSION Health provider awareness of cultural influences on the development of early maternal-foetal attachment of women pregnant by in vitro fertilization is needed. Prenatal education in early pregnancy might incorporate more information about foetal development to allow the mother to visualize her unborn child. Providing social support for women who were conceived by in vitro fertilization is beneficial to the development of maternal-foetal attachment.

A Comparative Study of Self Concept and Related Factors in Asthmatic and Healthy Schoolchildren

Objective: With a positive self concept, asthmatic schoolchildren are likely to accomplish self-management behaviors. The purpose of this study was, therefore, to investigate the self concept of school age children with and without asthma, and probe related factors. Materials and Methods: The subjects, 150 fourth to sixth graders of whom 50 were asthmatic and 100 were healthy, were purposively selected from a pediatric allergy outpatient clinic in a medical center in northern Taiwan. The research tools included a structured questionnaire, the ”Self Concept Scale” and the ”Parenting Style Scale”. Data were analyzed by descriptive and inferential statistics using SPSS for Windows/PC 10.0 software and StatXact-5 statistical software. Results: There was a significant difference between the self concept of asthmatic and healthy schoolchildren. Asthmatic childrens overall self concept (p＜0.01), self concept family subscale (p＜0.05), and self concept physical subscale (p＜0.001) were lower than those of healthy children. Asthmatic childrens limits in physical education class were significantly correlated with overall self concept, whereas the overall self concept was highest for children with full class attendance (p＜0.05) and no shortness of breath after exercise (p＜0.01). After modifying for the group effect, the parenting style and overall self concept were positively correlated (p＜0.001). Conclusions: These research results can serve as guidelines for medical care professionals, parents, and teachers, in caring for and teaching asthmatic and healthy schoolchild.

Receipt of life-sustaining treatments for taiwanese pediatric patients who died of cancer in 2001 to 2010 a retrospective cohort study

AbstractAggressive life-sustaining treatments have the potential to be continued beyond benefit, but have seldom been systematically/nationally explored in pediatric cancer patients. Furthermore, factors predisposing children dying of cancer to receive life-sustaining treatments at end of life (EOL) have never been investigated in a population-based study. This population-based study explored determinants of receiving life-sustaining treatments in pediatric cancer patients’ last month of life.For this retrospective cohort study, we used administrative data on 1603 Taiwanese pediatric cancer patients who died in 2001 to 2010. Individual patient-level data were linked with encrypted identification numbers from the National Register of Deaths Database, Cancer Registration System database, National Health Insurance claims datasets, and Database of Medical Care Institutions Status. Life-sustaining treatments included intensive care unit (ICU) care, cardiopulmonary resuscitation (CPR), and mechanical ventilation. Associations of patient, physician, hospital, and regional factors with receiving ICU care, CPR, and mechanical ventilation in the last month of life were evaluated by multilevel generalized linear mixed models.In their last month of life, 22.89%, 46.48%, and 61.45% of pediatric cancer patients received CPR, mechanical ventilation, and ICU care, respectively, with no significant decreasing trends from 2001 to 2010. Patients were more likely to receive all three identified life-sustaining treatments at EOL if they were diagnosed with a hematologic malignancy or a localized disease, died within 1 year of diagnosis, and received care from a pediatrician. Receipt of ICU care or mechanical ventilation increased with increasing EOL-care intensity of patients’ primary hospital, whereas use of mechanical ventilation decreased with increasing quartile of hospice beds in the patients’ primary hospital region.Taiwanese pediatric cancer patients received aggressive life-sustaining treatments in the month before death. Healthcare policies and interventions should aim to help pediatricians treating at-risk pediatric cancer patients and hospitals with a tendency to provide aggressive EOL treatments to avoid the expense of life-sustaining treatments when chance of recovery is remote and to devote resources to care that produces the greatest benefits for children, parents, and society.