Effectiveness of an Interdisciplinary Pediatric and Neonatal Palliative Care Simulation Program in India

BackgroundFor children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.MethodsOnline survey with in-country experts from N = 33 European countries.ResultsPediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service.ConclusionsPediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

To explore pediatric oncology and palliative care health care providers' perspectives on the barriers and facilitators to pediatric palliative care (PPC) referral for children with cancer in Canada using a qualitative approach to inquiry. Sixty-six health care providers from four tertiary pediatric hospitals across Canada participated in semistructured interviews. Data analysis used the grounded theory method. Data collection and analysis occurred concurrently using an inductive, constant comparative approach. Line-by-line coding guided the development of themes. NVivo software supported data management and coding. Through iterative analysis of the data, a systems theory-informed model of PPC referral was developed. The PPC referral process was best understood as a dynamic system involving four primary agents: oncologists, interprofessional oncology teams, PPC teams, and the patient and family. Each agent's readiness to initiate or accept referral was shaped by emotional, informational, cultural, skill-based, and environmental factors. We identified four distinct referral pathways, ranging from automatic referral at diagnosis to family-initiated referrals. Readiness for a referral emerged as a fluid, systemic state influenced by bidirectional interactions among all agents, rather than a static or solely clinical indicator. PPC referral is not a linear decision triggered by disease prognosis or progression alone, but rather a complex and evolving system shaped by interrelated human and organizational factors. Our systems theory model of PPC referral highlights the importance of fostering readiness across the health care team and integrating PPC as a relational and team-based process. These findings offer actionable insights to improve early PPC access and guide the design of interventions.

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Few studies have examined and compared neonatal physicians' and nurses' attitudes toward palliative care. This comparative study sought to evaluate attitudes toward neonatal palliative care in neonatal nurses and physicians and identify associated facilitators and barriers. This comparative, cross-sectional study included 173 neonatal intensive care unit staff (149 neonatal nurses and 24 neonatal physicians) in 2 hospitals in Istanbul, Turkey. Data were collected using the Turkish version of the Neonatal Palliative Care Attitude Scale. The results of the study revealed 8 facilitators and 9 barriers to neonatal palliative care. Nurses were significantly more likely than physicians to agree that parents are informed about palliative care options in their unit ( P = .008), that caring for dying infants is traumatic ( P = .007), and that their willingness to provide palliative care is influenced by their personal attitudes toward death ( P = .015). This study demonstrates the importance of parents' active involvement in the palliative care process, the establishment of standard policies and guidelines, and the provision of vocational and in-service education programs to support palliative care. Initiatives to strengthen facilitators and mitigate barriers are needed to optimize the implementation of palliative care in NICUs.

98% of neonatal deaths occur in a hospital setting, with few families spending the last few days of their babies' life at home or children's hospice. Palliative care is only...

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

The oldest palliative care program in Saudi Arabia is now two decades old. The program was designed in a general format to accommodate adults and children with life-limiting conditions. To date, the great majority of clients receiving services in palliative care programs in Saudi Arabia continue to be adults with advanced cancer. No specific pediatric palliative care programs or advocacy groups exist in Saudi Arabia. The efforts of some health institutions in pursuing staff specialization in pediatric palliative care are still in their infancy. In view of the paramount need for pediatric palliative care services and the relatively slow development of palliative care programs in general, development of palliative care needs to be raised on the health policy-makers’ agenda with due consideration to pediatric palliative care programs in particular. Although, the adoption of palliative care-friendly policies and the improvement of access to essential medications are important steps in Saudi Arabia, the pivotal step towards better development of palliative care is probably the training of health professionals.

Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. This was a retrospective medical record review. The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child’s body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT/ RCPCH classification system. The mean age in our study was 5.15 years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT/RCPCH. Conclusion: Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children.What is known:• Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses.• Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions.What is new:• This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions.• It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).

Paediatric palliative care and the social determinants of health: Mitigating the impact of urban poverty on children with life-limiting illnesses

Pediatric Palliative Care and eHealth: Opportunities for Patient-Centered Care

to develop a new scale to evaluate pediatric palliative care: the Pediatric Palliative Care Quality Assessment Scale (PPCQAS). 580 pediatric nurses constituted the sample of the study. They were asked to answer the sociodemographic questionnaire for nurses and a list of questions about the new pediatric palliative care scale, created by the expert opinion of the research team. Exploratory and confirmatory factor analysis was applied to evaluate the construct validity of the Palliative Care Attitude Scale. Pearson correlation coefficients were calculated to understand the relationships between the scale factors as well as the Cronbach and Omega alpha coefficients to observe its reliability based on internal consistency. In addition, test-retest analysis was performed to determine the scale's stability and whether it could measure consistently over time. The PPCQAS and the Neonatal Palliative Care Attitude Scale (NiPCAS) were administered in a single session for criterion validity. The scale showed a Cronbach Alpha coefficient of 0.95 and an Omega Alpha coefficient of 0.96. The correlation coefficient used as a test-retest reliability method showed a moderately positive relationship between the two applications (0.54). There were moderate positive correlations between the scores of PPCQAS and NiPCAS for organization (r = 0.63; p < 0.01), sources (r = 0.54; p < 0.01), and clinical (r = 0.42; p < 0.01) dimensions. These results showed that the pediatric palliative care scale has a unique structure and its validity-reliability is high. It has been determined that the pediatric palliative care scale is an adequate measurement tool.

A Framework for Providing Quality Pediatric Palliative Care

Too often children with life-threatening and life-limiting conditions and their families fail to receive adequate and consistent paediatric palliative care that meets their physical, psychological, social, and spiritual needs. The aim of this dissertation was to further improve the quality of paediatric palliative care and thereby the quality of life of children aged 0 to 18 years with life-threatening and life-limiting conditions and their families by developing the revised Dutch clinical practice guideline for paediatric palliative care. Health care providers expressed a need for more guidance on essential elements of paediatric palliative care based on the most recent evidence from scientific literature. This led to the revision of the first Dutch Paediatric palliative care guideline in 2013. The revised clinical practice guideline for paediatric palliative care was developed according to a standardized methodology that ensured trustworthiness. By using this methodology, we provided a large set of recommendations for essential components of paediatric palliative care including symptom treatment, advance care planning, shared decision-making, and psychosocial care including preloss and bereavement care. The recommendations were based upon evidence from scientific literature, clinical expertise and patient and family values. The insights and the findings of this dissertation open opportunities to further optimise the guideline and paediatric palliative care research. We elaborated on several opportunities such as the use of automated tools to improve the efficacy and quality in guideline development, broaden scope of the guideline for paediatric palliative care in the future, address identified knowledge gaps in paediatric palliative care, and facilitate further implementation of the guideline. These opportunities can facilitate the further optimisation of paediatric palliative care in the Netherlands but can also be used to improve paediatric palliative care worldwide.