Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions.

This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care.

Development and Application of Advance Care Planning Workbooks to Facilitate Communication with Children and Adolescent Patients: A Pilot Test / 한국호스피스완화의료학회지

Purpose@#This study presents the process of designing workbooks for advance care planning appropriate for the Korean cultural setting and describes actual case studies. @*Methods@#This study focused on single inductive case studies of the utilization of an advance care planning workbook and recruited individual participants. @*Results@#The workbook for adolescents contained six sessions and the workbook for children contained seven sessions. The workbook sessions led to four major discoveries: 1) considering the Korean cultural context, discussions on life and death must be held indirectly; 2) the role of the counselor as a supporter is crucial for the workbook to be effective; 3) the workbook must be accessible regardless of the seriousness of the illness; and 4) patients must be able to make their own choice between the workbook versions for children and adolescents. Six facilitating factors improved engagement: 1) the role of the counselor as a supporter; 2) building trust with the patient; 3) affirming freedom of expression on topics the patient wished to avoid talking about; 4) having discussions on what private information to keep secret and to whom the information can be disclosed; 5) discovering and regularly discussing relevant topics; and 6) regular communication and information-sharing with the patient’s medical service providers. Conclusion: It is necessary to build on actual case studies regarding workbooks for children and adolescents in order to expand the usage of these workbooks to all relevant medical institutions in Korea.

Development and Application of Advance Care Planning Workbooks to Facilitate Communication with Children and Adolescent Patients: A Pilot Test / 한국호스피스완화의료학회지

Purpose@#This study presents the process of designing workbooks for advance care planning appropriate for the Korean cultural setting and describes actual case studies. @*Methods@#This study focused on single inductive case studies of the utilization of an advance care planning workbook and recruited individual participants. @*Results@#The workbook for adolescents contained six sessions and the workbook for children contained seven sessions. The workbook sessions led to four major discoveries: 1) considering the Korean cultural context, discussions on life and death must be held indirectly; 2) the role of the counselor as a supporter is crucial for the workbook to be effective; 3) the workbook must be accessible regardless of the seriousness of the illness; and 4) patients must be able to make their own choice between the workbook versions for children and adolescents. Six facilitating factors improved engagement: 1) the role of the counselor as a supporter; 2) building trust with the patient; 3) affirming freedom of expression on topics the patient wished to avoid talking about; 4) having discussions on what private information to keep secret and to whom the information can be disclosed; 5) discovering and regularly discussing relevant topics; and 6) regular communication and information-sharing with the patient’s medical service providers. Conclusion: It is necessary to build on actual case studies regarding workbooks for children and adolescents in order to expand the usage of these workbooks to all relevant medical institutions in Korea.

Palliative Care Practitioners' Perception toward Pediatric Palliative Care in the Republic of Korea / 한국호스피스완화의료학회지

PURPOSE: This study was performed to investigate the current status of pediatric palliative care provision and how it is perceived by the palliative care experts. METHODS: A descriptive study was conducted with 61 hospice institutions. From September through October 2017, a questionnaire was completed by experts from the participating institutions. Data were analyzed using SPSS 21.0. RESULTS: Among 61 institutions, palliative care is currently provided for pediatric cancer patients by 11 institutions (18.0%), all of which are concentrated in Seoul, Incheon and Gyeonggi and Gyengsang provinces; 85.2% of all do not plan to provide specialized pediatric palliative care in the future. According to the experts, the main barriers in providing pediatric palliative care were the insufficient number of trained specialists regardless of the delivery type. Experts said that it was appropriate to intervene when children were diagnosed with cancer that was less likely to be cured (33.7%) and to move to palliative care institutions when their conditions worsened (38.2%); and it was necessary to establish a specialized pediatric palliative care system, independent from the existing institutions for adult patients (73.8%). CONCLUSION: It is necessary to develop an education program to establish a nationwide pediatric palliative care centers. Pediatric palliative care intervention should be provided upon diagnosis rather than at the point of death. Patients should be transferred to palliative care institutions after intervention by their existing pediatric palliative care team at the hospital is started.

How to Implement Quality Pediatric Palliative Care Services in South Korea: Lessons from Other Countries / 한국호스피스완화의료학회지

PURPOSE: Pediatric palliative care (PPC) is emphasized as standard care for children with life-limiting conditions to improve the quality of life. In Korea, a government-funded pilot program was launched only in July 2018. Given that, this study examined various PPC delivery models in other countries to refine the PPC model in Korea. METHODS: Target countries were selected based on the level of PPC provided there: the United Kingdom, the United States, Japan, and Singapore. Relevant literature, websites, and consultations from specialists were analyzed by the integrative review method. Literature search was conducted in PubMed, Google, and Google Scholar, focusing publications since 1990, and on-site visits were conducted to ensure reliability. Analysis was performed on each country's process to develop its PPC scheme, policy, funding model, target population, delivery system, and quality assurance. RESULTS: In the United Kingdom, community-based free-standing facilities work closely with primary care and exchange advice and referrals with specialized PPC consult teams of children's hospitals. In the United States, hospital-based specialized PPC consult teams set up networks with hospice agencies and home healthcare agencies and provide PPC by designating care coordinators. In Japan, palliative care is provided through several services such as palliative care for cancer patients, home care for technology-dependent patients, other support services for children with disabilities and/or chronic conditions. In Singapore, a home-based PPC association plays a pivotal role in providing PPC by taking advantage of geographic accessibility and cooperating with tertiary hospitals. CONCLUSION: It is warranted to identify unmet needs and establish an appropriate PPD model to provide need-based individualized care and optimize PPC in South Korea.