Agreement between quality of life assessed using family proxy and child self-reports among children with hematologic malignancy.

Evidence-based literature recognizes that the different degrees of agreement between a child self-report and a proxy-report depend on the characteristics of the domains, the child's age and illness, the proxy's own perspective on QoL, and family attendance during the child's hospitalization. This study aims to determine the degree of agreement between proxy-reports and child self-reports on quality of life (QoL) for children with hematologic malignancy ranging in age from 5 to 18 years who are undergoing treatment. We retrieved clinical QoL data from a study titled "Dynamic change in QoL for Vietnamese children with hematologic malignancy" from April 2021 to December 2022. To evaluate the magnitude of agreement between self-reports and proxy-reports, intraclass correlation coefficients (ICCs) for 259 pairs of measurements were quantified. Using independent t tests, the mean differences between self-reports and proxy-reports were tested. Moderate agreement was consistent through all age groups for five subscales, including physical, psychosocial, pain, nausea, and procedural anxiety (ICCs ranged from 0.53 to 0.74). The weakest agreement appeared in two groups, subjects aged 5-7 years and 13-18 years on six domains (school, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication) (-0.01 to 0.49). Child self-rating was consistently higher than that of proxies for the physical, emotional, and nausea domains among children aged 5-7 years and for procedural anxiety, treatment anxiety, and cognitive problems among children aged 8-12 years.    Conclusion: The agreement level of self-reports and proxy-reports was differently distributed by child age and the PedsQL domains. The proxy children agreement on QoL among children with hematologic malignancy was divergent according to the different age groups, which could potentially be explained by proxy-child bonding at different stages of childhood development. Our recommendation for future studies is to explore children's age as a potential factor influencing proxy agreement on QoL among children with cancer. What is Known: • Children and their proxies may think differently about quality of life (QoL). • Comparing two sources of data (i.e., child and proxy) on aspects of QoL can help identify the discrepancies between children's perceptions of their QoL and their parents' perceptions. This can be useful in terms of identifying potential areas for improvement or concern and may also be helpful in making decisions about treatment and care. What is New: • Our study results demonstrated that proxies who comprised children aged 5-7 years or 13-18 years reported differently among domains that cannot be expressed verbally or with body language, including cognitive problems, perceived physical appearance, and communication. • Children generally perceived their QoL to be better than their proxies. Therefore, a more comprehensive understanding of children's QoL may require the consideration of multiple sources of data from various perspectives.

Factors impacting the demonstration of relational autonomy in medical decision-making: A meta-synthesis.

BACKGROUND: Relational autonomy is an alternative concept of autonomy in which an individual is recognized as embedded into society and influenced by relational factors. Social context, including social location, political structure, and social forces, significantly influence an agent to develop and exercise autonomy skills. The relational approach has been applied in clinical practice to identify relational factors impacting patient autonomy and decision-making, yet there is a knowledge gap in how these factors influence the demonstration of relational autonomy in the context of medical decisions of adults. OBJECTIVE: The present study targeted the existing knowledge of what and how relational factors impact individuals making medical decisions using the theoretical framework of relational autonomy. METHODS: A meta-synthesis study was utilized. Four electronic databases, including Embase, OVID Medline, CINAHL, and PubMed, were searched, along with gray literature and reference lists, to identify relevant studies. RESULTS: 23 studies reporting 21 qualitative and two mixed-method studies were reviewed. Four themes emerged from the qualitative findings: (1) supportive relationships facilitate an individual's relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressure impedes the exercising of patient relational autonomy; and (4) healthcare providers' dominant voice hampers the demonstration of relational autonomy. CONCLUSIONS: Applying relational autonomy to assist adults in making well-considered decisions is essential. The meta-synthesis suggests establishing a supportive relationship between individuals, healthcare providers, and family. A supportive relationship will allow healthcare providers to make judgments in line with an individual's values and wishes with the aim of promoting relational autonomy. Advance care planning was proposed as the effective solution to obtain a consensus between individuals and their families while respecting an individual's values and preferences. Furthermore, it is considered crucial for healthcare providers to appreciate an individual's values and incorporate their preferences into recommendations.

Effects of Distraction on Reducing Pain During Invasive Procedures in Children with Cancer: A Systematic Review and Meta-Analysis.

BACKGROUND: Distraction is a known behavioral intervention that is widely used for pain management in the pediatric population. However, there is a shortage of reviews reporting the efficacy of distraction for procedural pain reduction in pediatric oncology settings. AIM: To determine the current evidence on the effects of distraction on procedural pain in children with cancer. DESIGN: This systematic review and meta-analysis was undertaken according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines SETTINGS: Six different databases from 1990 to June 2019. METHOD: A literature search was conducted to identify the effects of distraction on procedural pain reduction in children with cancer. A meta-analysis was undertaken along with applying a mixed effect model to quantify the standardized mean difference in the 95% confidence interval (CI) as the overall effects. RESULTS: Ten randomized controlled trials were included. Distraction during an invasive procedure had a large effect on pain intensity (-0.92, 95% CI -1.48 to -0.36, p = .001) and on needle insertion as well (-1.12, 95% CI -1.52 to -0.72, p = .000), but only a moderate effect on lumbar puncture procedures (-0.57, 95% CI -1.02 to -0.12, p = .012). Uncertain effects on pain relief showed up in a virtual reality (VR) distraction (-0.93, 95% CI -2.63 to 0.76, p = .28) and during active distraction (-0.72, 95% CI -1.48 to 0.03, p = .06). CONCLUSIONS: Distraction is an efficacious intervention to reduce procedural pain during needle insertion or lumbar puncture procedures in children with cancer. However, the efficacy of active distraction and VR remain uncertain. Future research should focus on specific comparisons of different forms of distractions with larger sample sizes.

When and how do healthcare professionals introduce specialist palliative care to the families of children with life-threatening conditions in Taiwan? A qualitative study.

BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine the triggers leading to and experiences with introducing SPC among families of children with life-threatening conditions. METHODS: A secondary analysis of 13 semi-structured interviews with HPs conducted from September 2019-June 2020 was carried out in a pediatric ward and a neonatal and pediatric intensive care unit in Taiwan. A thematic analysis was conducted. Competence Theory was used to guide the research questions and the interpretive framework. FINDINGS: Seven nurses, four pediatricians, one psychologist, and one respiratory therapist were interviewed. The need for shared knowledge regarding wishes for care and end-of-life decision-making were found to be the indicators for introducing SPC, along with having a fear of causing harm to the family-professional relationship and the patient. HPs value harmony in the form of clarifying misconceptions, building trust, and holding the moral bottom line. The theme of 'seeking the competent self' encompasses the values and expectations related to improving skills and creating a sense of fulfillment as HPs achieve good quality care. DISCUSSION: Discussions about SPC facilitate better communication and decision-making. Careful attention should be paid to the needs related to clarifying misconceptions and protecting the child's right to life when SPC is suggested. APPLICATION TO PRACTICE: Communication, empathy, and conflict resolution training may be helpful with developing HP competencies related to introducing SPC.

Efficacy of Scenario Simulation-Based Education in Relieving Parental Anxiety about Fever in Children.

PURPOSE: This study was designed to evaluate the short- and long-term effects of a scenario simulation-based education intervention on parental anxiety about fever in their children. DESIGN AND METHODS: This experimental research was conducted using a two-group pretest-posttest design. One hundred and sixty parents of 3-month to 5-year-old children enrolled in preschools and kindergartens with childcare services were recruited as participants using cluster random sampling. The participants were divided randomly into an experimental group (80) and a control group (80). The former participated in a scenario simulation-based education intervention and received a fever education booklet. The latter received the booklet only. Data were collected using the Children's Fever Anxiety Inventory at three time points: before the intervention (pretest, T1) and at six-month (T2) and 12-month (T3) posttests. RESULTS: Significant intergroup differences in fever anxiety were found at both T2 and T3 (p < .001). For both groups, the scores at T2 and T3 were significantly lower than at T1 (p < .001) and the difference between T2 and T3 did not attain statistical significance (p > .05). Although both groups experienced reduced fever anxiety over time, this reduction was significantly greater in the experimental group than in the control group (p < .001). CONCLUSION: Simulation-based education may be used in conjunction with the traditional fever education booklet to further reduce parent fever anxiety over time. PRACTICE IMPLICATIONS: This simulation-based education approach significantly and positively impacts parental anxiety about fever in their children. Furthermore, the approach may be generalizable to other childhood healthcare settings.

Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review.

OBJECTIVE: To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. METHOD: Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. RESULTS: Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. SIGNIFICANCE OF RESULTS: Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

[The Clinical Application of Developmental Care in Retinopathy of Prematurity Eye Examinations].

Retinopathy of prematurity (ROP) is a disorder affecting the development of retinal blood vessels in preterm infants. Eye screening examinations are important to the early detection and treatment of ROP. However, several studies have associated eye examinations with pain, stress, and negative physiological effects. Developmental care has been provided as part of neonatal care in recent decades, and some studies indicate that this care positively affects pain scores, stress response, and recovery time during ROP eye screenings. In this article, five elements of developmental care that are applicable for preterm infants undergoing eye examinations for ROP are highlighted and described. These five elements include environmental modifications (e.g., provide a quite environment and dim room lighting), positioning (e.g., offer a nest or positing support and promote the infant to achieve neuromotor development), oxygen delivery (provide adequate oxygen support according to clinical conditions), approach and interaction (e.g., talk softly to infants and gently touch them before the eye examination), and cue-based individual care (e.g., soothe infants, give them a short break or soother based on observations of needs and cue-based behavior). Effectively addressing these five elements may minimize the pain, stress, and energy consumption during ROP eye screenings and provide individualized care that is comfortable, supportive, and promotes the healthy development of preterm infants.

[Nursing Experience of a Child With Difficulty Breathing With End-Stage Niemann-Pick Disease Type C].

This case report describes a nursing experience providing end-of-life care to a child with Niemann-Pick disease type C. The period of nursing care was from April to June 2018. After comprehensive nursing and family assessment, dyspnea and caregiver's role strain were identified as the primary nursing-care problems. Niemann-Pick is a rare disease caused by genomic abnormalities. Patients with this disease are unable to metabolize lipids, which accumulate in organs, causing hepatosplenomegaly, dyspnea, and central nervous system degeneration. There is a lack of relevant experience in medical and nursing care due to the small number of cases worldwide. It is difficult to predict the progress of this disease and the life expectancy of the patient. The complex indications of this disease complicate the caregiver burden and process of end-of-life care. Thus, the multi-disciplinary team integrated the discharge preparations, symptom control skills, and related resources to build consensus with the family. We provided nursing care continuously from hospital to home as well as improved quality of care and family cohesion and reduced caregiver load. We hope that sharing this experience provides a reference for discharge planning and end-of-life care for children with rare diseases.

Unmet supportive care needs and psychological distress among parents of children with cancer in Indonesia.

OBJECTIVE: The aim of this study was to investigate the needs and associating factors, psychological distress of parents, when taking care of children with cancer in Indonesia. METHODS: A cross-sectional study was conducted among 100 parents of children with cancer from the pediatric ward of two hospitals in Indonesia. The parents were assessed using the Indonesian version of the Supportive Care Needs Survey for Partner and Caregiver (unmet needs) and the Hospital Anxiety Depression Scale (psychological distress). The factors associated with unmet needs were analyzed using hierarchical linear regression. RESULTS: Among the surveyed parents, 83% had over 10 unmet needs. Among these unmet needs, need for information was the highest one. In the self-report measure using a clinical cut-off, 49% of the parents reported signs of anxiety, and 25% had signs of depression. Parents reporting clinically relevant levels of anxiety had more unmet needs than parents without clinically relevant anxiety. Having fewer children was correlated with higher work and social needs, and higher levels of education were correlated with more psychological needs. However, the children's clinical variables were not associated with the overall needs in the regression model. CONCLUSIONS: Most parents of children with cancer reported a need for more information and reported signs of anxiety and depression. Parents with fewer children and higher levels of education were identified as a vulnerable population due to having greater needs. The result of this study can be used to improve supportive care for parents of children with cancer in hospital settings.

A modified developmental care bundle reduces pain and stress in preterm infants undergoing examinations for retinopathy of prematurity: A randomised controlled trial.

AIMS AND OBJECTIVES: To determine the comparative efficacy of developmental care versus standard care for reducing pain and stress in preterm infants during examinations for retinopathy of prematurity (ROP). BACKGROUND: ROP examinations are routinely performed in neonatal intensive care units to detect these lesions. Pain scores recorded during and after eye examinations have revealed physiological and behavioural manifestations of pain and stress. DESIGN: A randomised crossover trial was conducted. METHODS: Fourteen preterm infants were evaluated. The modified developmental care bundle included environmental modifications, positioning and containment, oxygen supplementation, interaction and approach and cue-based individual care, which were applied before, during and after the ROP examination. The primary outcomes were obtained from pain and stress scores using the premature infant pain profile-revised (PIPP-R) and a behavioural evaluation. The secondary outcomes were recovery time to the baseline of the vital signs and oxygen saturation. RESULTS: Statistical significances were found in the care type comparison (p = 0.013), time comparison (p < 0.001) and type-by-time interaction (p = 0.005) in the PIPP-R, and also in the care type comparison (p < 0.001), time comparison (p < 0.001) and type-by-time interaction (p = 0.001) in the behavioural evaluation scores using a generalised estimating equation (GEE) analysis. Recovery time for the developmental care (N = 13, mean = 8.6 ± 11.5 min, 95% CI = 1.68-15.57) was significantly shorter than for the standard care (N = 11, mean = 25.5 ± 20.8 min, 95% CI = 11.45-39.46), which was found to be statistically significant according to the Wilcoxon signed-rank test (N = 11, p = 0.003). CONCLUSIONS: A bundled developmental care intervention significantly reduced pain and stress responses and the time needed for infants to recover their physiological status following the procedure. RELEVANCE TO CLINICAL PRACTICE: Since the results show the benefits of developmental care in an ROP examination, it can be the practical evidence basis by which to develop a standard of procedure or guideline for clinical practice.

[Helping a Preterm Infant Through the Transitional Feeding Period Using a Cue-Based Feeding Approach of Developmental Care].

The aim of this case report was to identify the optimal point to start oral feeding in order to help a preterm infant successfully pass through the transitional feeding period. Because all preterm infants must go through a transitional feeding period, going through this period successfully is very important. This case report described a nursing experience related to caring for a low-birth-weight preterm infant who showed hunger cues before feeding at around 31gestational weeks during the tube-feeding period. An assessment revealed that the preterm infant did not exhibit good sucking, breathing, and swallowing coordination. Therefore, we decided to design a nursing care plan to help the preterm infant transition smoothly from tube feeding to oral feeding. The nursing care period was from September 21st to November 2th, 2017. The care processes included: 1) the oral stimulation phase: provision of oral stimulation to increase oral motor function, 2) the oral feeding training phase: use of the Preterm Oral Feeding Readiness Scale (POFRAS) assessment tool to assess feeding readiness before oral feeding, 3) use of a cue-based approach to decide the starting and stopping points, and, finally, 4) the transition to the demand feeding phase. As the preterm infant grew, the body weight and feeding amount both increased positively and without complications. This experience may serve as a model for developing clinical guidelines for a cue-based feeding approach for preterm infants during the transitional feeding period.

[The Ethical Issues in Research on Child Abuse].

Child abuse is a sensitive research topic. Improving the health of the victims of abuse through research, rights protection, and preemption of harm are important and debatable ethical issues. The ethical considerations related to research into child abuse cover two dimensions: 1) using children as subjects and 2) concerns regarding the physical and mental health of children who are targeted by related research. This paper focuses on several common ethical issues in the field of child abuse research, starting from the formulation of the research problem, sampling, data collection, and results reporting. Ethical issues include obtaining informed consent, assuring the autonomy of maltreated children and adults with childhood abuse histories, ensuring a sense of control and safety during data collection, and establishing the role of researchers as mandated reporters. As a researcher, rigorous research design and methodology and self-preparation on the issue of childhood trauma and abuse are essential in order to reduce the risk of harm to victims. This paper is intended to provide suggestions for researchers and institutional review board committees to assess the ethics of conducting research on sensitive issues.

Exploring the growth trajectory of cultural competence in Taiwanese paediatric nurses.

AIM: To explore the evolution of cultural competence in Taiwanese paediatric nurses. BACKGROUND: Because transnational marriage has become a social phenomenon in Taiwan, the proportion of newborns of new immigrant mothers accounts for 8%-10% of total births every year. As family-centred care is the core value of paediatric nursing, it is necessary to teach caregivers how to take care of hospitalised children and perform related nursing care as well as to determine what difficulties nurses will encounter when they care for patients from diverse cultures and to find solutions for these problems. Unfortunately, few nursing programmes provide elective transcultural courses. DESIGN: A phenomenological design was applied in the study. METHOD: A purposive sampling method was used. Nurses who had served in paediatric wards for over 1 year and who also had experience with taking care of the children of new immigrants were recruited as the informants. The data were collected through face-to-face in-depth interviews and analysed using Moustakas' method (1994). Rigour and trustworthiness was based on Yardley's evaluative criteria. RESULTS: The researcher interviewed ten paediatric nurses. Their average age was 31.6 years. The mean seniority of their service in paediatric wards was 6.3 years. Four major themes were obtained from the data, including perceiving difficulties related to caring for patients from diverse cultures, self-reflection on diverse cultures and the findings, finding approaches based on experiences with diverse cultures and new perceptions and identification with diverse cultures. CONCLUSIONS: In this study, clinical nurses were interviewed who had not had cultural competency training during their nursing education. It is suggested that such courses be provided for nurses to improve their cultural competence. RELEVANCE FOR CLINICAL PRACTICE: Accordingly, educational strategies could be generated to improve nurses' cultural competence related to clinical applications.

IJEPA: Gray Area for Health Policy and International Nurse Migration.

Indonesia is recognized as a nurse exporting country, with policies that encourage nursing professionals to emigrate abroad. This includes the country's adoption of international principles attempting to protect Indonesian nurses that emigrate as well as the country's own participation in a bilateral trade and investment agreement, known as the Indonesia-Japan Economic Partnership Agreement that facilitates Indonesian nurse migration to Japan. Despite the potential trade and employment benefits from sending nurses abroad under the Indonesia-Japan Economic Partnership Agreement, Indonesia itself is suffering from a crisis in nursing capacity and ensuring adequate healthcare access for its own populations. This represents a distinct challenge for Indonesia in appropriately balancing domestic health workforce needs, employment, and training opportunities for Indonesian nurses, and the need to acknowledge the rights of nurses to freely migrate abroad. Hence, this article reviews the complex operational and ethical issues associated with Indonesian health worker migration under the Indonesia-Japan Economic Partnership Agreement. It also introduces a policy proposal to improve performance of the Indonesia-Japan Economic Partnership Agreement and better align it with international principles focused on equitable health worker migration.

[Ethical Debates Related to the Allocation of Medical Resources During the Response to the Mass Casualty Incident at Formosa Fun Coast Water Park].

Disasters are unpredictable and often result in mass casualties. Limited medical resources often affect the response to mass casualty incidents, undermining the ability of responders to adequately protect all of the casualties. Thus, the injuries of casualties are classified in hopes of fully utilizing medical resources efficiently in order to save the maximum possible number of people. However, as opinions on casualty prioritization are subjective, disagreements and disputes often arise regarding allocating medical resources. The present article focused on the 2015 explosion at Formosa Fun Coast, a recreational water park in Bali, New Taipei City, Taiwan as a way to explore the dilemma over the triage and resource allocation for casualties with burns over 90% and 50-60% of their bodies. The principles of utilitarianism and deontology in Western medicine were used to discuss the reasons and rationale behind the allocation of medical resources during this incident. Confucianism, a philosophical mindset that significantly influences Taiwanese society today, was then discussed to describe the "miracles" that happened during the incident, including the acquisition of assistance from the public and medical professionals. External supplies and professional help (social resources) were provided voluntarily after this incident, which had a profound impact on both the immediate response and the longer-term recovery efforts.

[Innovative Prenatal Testing: Clinical Applications and Ethical Considerations].

The biomedical technology related to prenatal screen/diagnosis has developed rapidly in recent decades. Many prenatal genetic examinations are now available to assist pregnant women to better understand the status and development of their fetus. Moreover, many commercial advertisements for innovative prenatal examinations are now shown in the media. Cell-free DNA Screening (cfDNA screening), a non-invasive prenatal testing (NIPT) procedure, is a safe and high accuracy test that may be done at an earlier gestational age to screen for fetal aneuploidy. The following questions should be considered when applying cfDNA screening in clinical practice: 1. what is cfDNA screening, 2. who are its potential users, and 3. what ethical and policy considerations are associated with this examination? This article provides relevant information, clinical practice guidelines, and ethical / policy considerations related to cfDNA screening. Discussing cases involving different clinical situations helps promote understanding of cfDNA screening and maternal-care quality.

Development and Psychometric Testing of the Caregiver Communication Competence Scale in Patients With Dementia.

Appropriate communication skills are essential for understanding patient needs, particularly those of patients with dementia. Assessing health care providers' competence in communicating with patients with dementia is critical for planning a communication education program. However, no formally established scale can be used. The purpose of the current study was to develop a valid and reliable instrument for determining the communication competence of health care providers with patients with dementia. Through use of a literature review and previous clinical experience, an initial 28-item scale was developed to assess the frequency of use of each item by health care providers. Fourteen items were extracted and three factors were distinguished. Results indicated that the internal consistency reliability of the 14-item scale was 0.84. Favorable convergent and discriminant validities were reached. The communication competence scale provides administrators or educators with a useful tool for assessing communication competence of health care providers when interacting with patients with dementia so a suitable education program can be planned and implemented.

[The long road home: a discussion of the autonomy of schizophrenia patients after their discharge from the hospital].

Every adult has the right to self-determination and to have his or her autonomy respected. While schizophrenia patients have the right to be discharged from the hospital, their needs subject their caregivers to high care loadings. This situation presents a dilemma for the medical team. The authors justify the patient's autonomy to request and to be granted a discharge. Then, present the decision-making process related to discharge for the reference of medical teams. Capacity is necessary to autonomy. There is currently no standard for assessing the capacity of patients that clearly defines their competence. A sliding scale approach to decision making distinguishes between decisions involving significant potential risk and, therefore, involving higher level of capacity requirements and decisions on minimal potential risk. In order to protect the interests of patients, the sliding scale approach takes into account different decisions. Cases in which schizophrenia patients choose to self-discharge involve a high-level of risk. Poor preparations for follow-up care lead to poor-quality patient care and may cause harm to the patients. In a share decision model, the medical team plays the role of negotiator between the patient and the family and respects the autonomy of the patient while supporting the family through the hospital discharge process. Medical team must have a discharge planning for the patient and family, follow-up care system, and support network. During hospitalization, the discharge plan aims to facilitate the life adaptation and disease recovery for patients with the goal of restoring their normal home life.

[Consent vs. Assent: Ethical Considerations Related to Bone Marrow Transplantation in Adolescents].

Bone marrow transplantation (BMT) is a frequently considered treatment option for terminal childhood cancer. However, the side effects of BMT frequently cause short- and long-term physical discomfort and spiritual suffering, which significantly impact patient quality of life. In Taiwan, parental consent is typically given priority over the assent of children in medical decisions. This article uses a case of an adolescent patient with neuroblastoma undergoing BMT to discuss the best interest standard and contradictions between the consent of parents and the assent of their children. This article argues that medical staffs are responsible to protect the right of children to fully consider and influence the decisions related to their treatment options. Medical staffs should communicate to parents the importance of their children's assent and promote better communication between parents and their children in order to achieve the best outcome for the family as a whole. When mutual communication is unable to resolve conflicts between parents and their children, we recommend seeking assistance from the ethics committee in the hospital.

Prevalence, trends, and specialized palliative care utilization in Taiwanese children and young adults with life-limiting conditions between 2008 and 2017: a nationwide population-based study.

BACKGROUND: Previous studies have shown a growing need for pediatric palliative care, but there is a lack of knowledge in many countries concerning prevalence of service use among children and young adults with life-limiting conditions. This study aimed to estimate (1) the annual prevalence of children and young adults with a life-limiting condition, and (2) their specialized palliative care and other healthcare utilization. METHODS: Data from the Health and Welfare Data Science Center in Taiwan were used. All children and young adults aged 0-25 years recorded in inpatient or outpatient data, and infants aged < 1 year in death data with a life-limiting condition diagnostic code from 2008 to 2017 were recruited. Poisson regression was used to estimate the crude and adjusted relative risk of prevalence of life-limiting conditions with 95% confidence intervals, adjusted for age and sex, and to evaluate the trend in prevalence of each life-limiting diagnostic groups, in specialized palliative care and other service use. RESULTS: Data contained 236,250 individuals with a life-limiting condition, of which oncological and congenital abnormalities were the most common. There was an annualized increase over 10 years in the prevalence of life-limiting conditions of 36.4%, from 45,311 cases (59.4 per 10,000 population) to 52,226 cases (81.0 per 10,000 population), with the highest prevalence in individuals aged 21-25 years. All diagnostic groups showed significant increases in prevalence (p < .001) with the exception of oncology, circulatory, and "other" group. Specialized palliative care services, including family consultation, shared care, home visits have increased in use over time (p < .001), while inpatient hospice has slightly decreased. The highest prevalence of healthcare use was for traditional Chinese medicine (237.1 per 1,000 population in 2017), but this decreased over time (p < .001). CONCLUSIONS: Due to a growing trend towards multidisciplinary care, healthcare professionals and policymakers must engage and take action to expand specialized palliative care and integrate delivery of other healthcare services. Traditional Chinese medicine having a decreasing slope, yet still the highest prevalence of use, needs further attention.