Towards optimised paediatric palliative care

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

BackgroundChildren with life-threatening and life-limiting conditions and their families are confronted with many uncertainties, incremental losses, and difficult decisions. Attentiveness to psychosocial care, including psychological, social, and spiritual concerns, is essential during the child’s life until end-of-life and during bereavement and determines quality of life and wellbeing of child and family. However, use and integration of psychosocial care is found to be challenging. In this paper, we provide recommendations that aim to optimise psychosocial care including preloss and bereavement care in paediatric palliative care.MethodsA multidisciplinary guideline development panel of 25 experts in paediatric palliative care and nine parents was established to develop recommendations on psychosocial care including preloss and bereavement care. We performed a systematic literature search to identify evidence focussing on effectivity of interventions described in systematic reviews (SRs) of randomised controlled trials (RCTs) and RCTs. From the search, we also derived evidence from SRs of observational, qualitative, or mixed-method studies on preloss and bereavement care. The GRADE methodology was used for appraising evidence. We used existing guidelines to deal with lack of evidence. Recommendations were formulated based on evidence, existing guidelines, clinical expertise, and patient and family values.ResultsWe identified a total two SRs of RCTs and six RCTs that reported on the effect of psychological interventions, spiritual support interventions, and bereavement care intervention. The evidence showed that only some of the interventions improve certain psychosocial outcomes in children or parents. We were unable to draw conclusions on which intervention is most effective, due to the high variability in interventions and measured outcomes. The evidence from ten SRs of observational, qualitative, or mixed-method studies was used as a basis for preloss and bereavement care recommendations. In total, we formulated 48 recommendations.DiscussionWith the provided recommendations, we aim to optimise psychosocial care for children with life-threatening and life-limiting conditions and their families. Psychosocial care should be tailored to the child and family. We found a lack of evidence on psychosocial care including preloss and bereavement care. Although very challenging, we propose implementing strategies to improve research and thereby further optimise quality of paediatric palliative care. These strategies include the development of a standard set of outcomes and to conduct well-designed multisite RCTs.

BackgroundProvision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.MethodsThe revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.ResultsThe two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.ConclusionsThe revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.

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.

Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child’s needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents’ and carers’ involvement in the decision-making process for the child and their awareness of the child’s life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child’s ACP, and the stepwise management of pain.

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.

Pediatric palliative care (PPC) improves the quality of life for children with life-limiting conditions, but the cost of care associated with PPC has not been quantified. This study examined the association between inpatient cost and receipt of PPC among high-cost inpatients. The 10% most costly inpatients treated at a children's hospital in 2010 were studied, and factors associated with receipt of PPC were determined. Among patients dying during 2010, we compared 2010 inpatient costs between PPC recipients and nonrecipients. Inpatient costs during the 2-year follow up period between PPC recipients and nonrecipients were also compared. Patients were analyzed in 2 groups: those who died and those who survived the 2-year follow-up. Of 902 patients, 86 (10%) received PPC. Technology dependence, older age, multiple chronic conditions, PICU admission, and death in 2010 were independently associated with receipt of PPC. PPC recipients had increased inpatient costs compared with nonrecipients during 2010. Among patients who died during the 2-year follow-up, PPC recipients had significantly lower inpatient costs. Among survivors, PPC recipients had greater inpatient costs. When controlling for patient complexity, differences in inpatient costs were not significant. The relationship of PPC to inpatient costs is complex. PPC seems to lower costs among patients approaching death. Patients selectively referred to PPC who survive most often do so with chronic serious illnesses that predispose them to remain lifelong high-resource utilizers.

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).

Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study.

Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.

In paediatric palliative and bereavement care, providing comprehensive support that extends beyond medical treatment to address the emotional and psychosocial needs of children and their families is essential. Memory-making interventions play a critical role in capturing cherished moments and fostering emotional resilience. However, widespread consensus on the foundation and scope of memory-making interventions for children and young people remains sparse. This review aims to identify, appraise, and synthesise the evidence on memory-making interventions for children and young people with life-limiting or life-threatening conditions and their family members receiving palliative or bereavement care. This systematic review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). A systematic search will be undertaken from January 1, 1985, to February 27, 2024, across the following databases: PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, the Cochrane Library, and Scopus. Studies across diverse research designs that examine children (0-19 years) with life-limiting or life-threatening conditions undergoing memory-making interventions with psychosocial or other outcomes will be included. Screening, data extraction, and quality appraisal will be performed by two independent reviewers, with a third reviewer resolving discrepancies. Joanna Briggs Institute guidelines for conducting mixed methods systematic reviews will be used to inform the data analysis and synthesis process. This review will provide critical insights into the existing evidence base on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of healthcare for children and young people with life-limiting and life-threatening conditions and their families as well as families in bereavement. This review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (CRD42024521388; 18/03/2024).

Early integration of pediatric palliative care (PPC) improves symptom control, communication, and goal-concordant decision-making. Despite these benefits, PPC remains underutilized in many Asian healthcare systems, where referrals are often delayed and most children die in intensive care units (ICUs). This retrospective cohort study included children aged 0-18 years who died between 2008 and 2017 at two medical centers in southern Taiwan (n = 294). A shared PPC program was implemented in 2011, embedding palliative specialists within primary care teams. Documentation of do-not-resuscitate (DNR) orders, family meetings, PPC consultations, cardiopulmonary resuscitation (CPR), and place of death were compared across pre-implementation, early post-implementation, and late post-implementation phases. Following implementation, DNR documentation increased from 59.2% to 73.9% (p = .03). Documented family meetings rose from 4.1% to 18.2% (p < .001), and PPC consultations increased from 7.1% to 23.9% (p < .001), suggesting potential improvements in interdisciplinary communication and advance care planning. ICU deaths remained high (87.8%-89.8%), and CPR rates declined but did not reach statistical significance (p = .09). Cancer diagnosis (OR = 7.97, 95% CI 2.71-23.42) and increasing age at diagnosis (OR = 1.12 per year, 95% CI 1.06-1.18) were independently associated with PPC consultation. Integration of a shared PPC model was associated with improvements in advance care planning and interdisciplinary collaboration. Earlier referral triggers, clinician education, and expansion of community-based PPC services may be important to help reduce high-intensity end-of-life care and better align care delivery with family preferences.

Participatory research is an approach wherein all parties concerned play an active role throughout the research process, from initial design to the interpretation and dissemination of results. This article reports on two participatory research projects evaluating a new in-home respite program for children requiring pediatric palliative care and their families. Some of the realities, benefits, and challenges resulting from a participatory approach to research in pediatric palliative care are described. The outcomes of these two studies highlight the conclusion that organizations, professionals, volunteers, and family members accompanying the dying benefit from a participatory research method that actively engages their involvement. This approach offers participants the opportunity to voice concerns as well as supports a sense of empowerment. From the researcher's point of view, a participatory process can serve to increase both the social relevancy and impact of the research.

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.

Background: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. Aim: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. Design: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). Data sources: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). Results: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. Conclusion: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.