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Background An estimated 170,000 children in the WHO European Region have no access to palliative care annually. In Luxembourg, there is a lack of data on children needing palliative care, and the existing structure appears limited. This study aims to assess the current state of pediatric palliative care in Luxembourg. Methods We used a parallel convergent mixed-methods approach, collecting qualitative and quantitative data simultaneously and analyzing them independently. Snowball and purposive sampling methods were employed. The qualitative data, including documents, email correspondence, and open-ended interviews with participants caring for children with life-limiting or life-threatening conditions, followed the COREQ guidelines and were analyzed using thematic analysis. Quantitative data were analyzed using both descriptive and inferential statistical methods. Results The analysis highlights a significant gap in the provision of care at all levels of pediatric palliative care in Luxembourg. Approximately 500 to 600 children up to 19 years old require palliative care each year, which exceeds previous estimates. Existing legal frameworks are predominantly designed for adults and end-of-life care, and do not sufficiently address the holistic needs of children requiring palliative care and their families. Homecare services are in the early development phase, and specialized pediatric palliative care options are limited across all levels. A pediatric palliative care course, set to be introduced in 2025 for university pediatric nursing students as outlined in the national plan, aims to address some of these gaps by developing competencies. However, until sufficient specialized care is established, many children are transferred to neighboring countries where there are better resources and expertise or remain at home, receiving limited services. Conclusion This study presents, for the first time, data on pediatric palliative care in Luxembourg, with a focus on service availability, the legal framework, and the estimated number of children requiring care. The findings highlight the urgent need for a structured pediatric palliative care service to address this country’s growing demand and unmet needs. In addition, it is essential to support the implementation of the “ National Plan for End of Life and Palliative Care ” from 2023 to 2026, which includes a dedicated focus on children.

Background Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process. Methods We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders’ perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes. Results The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors. Conclusions Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.

Background In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.

Background Children 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. Methods A 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. Results We 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. Discussion With 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.

Background Perinatal palliative care is an emerging branch of children’s palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. Methods A single-centre retrospective chart review of all antenatal referrals to a quaternary children’s palliative care service over a 14-year period from 2007 to 2021. Results One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home ( n  = 10) or in a hospice ( n  = 6) and the largest number died in hospital ( n  = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. Conclusions Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.

Background Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.

Background Provision 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. Methods The 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. Results The 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. Conclusions The 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.

Palliative care (PC) is a new concept in Iraq, and there is no training for health care specialists or the public. The lack of education and training programs is the most important barrier for PC. Intermediate training is needed for nurses who regularly manage patients with life-threatening diseases. The End-of-Life Nursing Education Consortium for pediatric palliative care (PPC) program is intended for nurses who are interested in providing care to children with life-limiting diseases or providing support in the event of an accident or unexpected death. Our trial aims to evaluate the effect of a web-based training course, using the Normalization Process Theory. It focuses on how complex interventions become routinely embedded in practice and on training of a sample of academic nurses in the application of PPC in routine daily practice. It hypothesizes that nurses will be able to provide PC for the pediatric population after completing the training. This is a multicenter, parallel, pragmatic trial in 5 health care settings spread across a single city in Babylon Province, Iraq. Participants will be recruited and stratified into 2 categories (critical care units and noncritical care units). In the experimental condition, 86 nurses will be trained in the application of PPC for 2 weeks through a web-based training course powered by the Relais Platform. The nurses will be invited to participate via email or instant messaging (WhatsApp, Telegram, or Viber). They will provide end-of-life care in addition to usual care to children and adolescents with life-limiting conditions. In the control condition, 86 nurses will continue usual care. The program's effectiveness will be assessed at the level of nurses only. We will compare baseline findings (before the intervention) with postintervention findings (after completing the training course). A further assessment will be performed 3 months after the course. As numerous unidentified factors can influence the effect of the training, we will perform a progressive evaluation to assess sample selection, application, and intervention value, as well as implementation difficulties. The nursing staff will not be blinded to the intervention, but will be blinded to the results. The study trial recruitment opened in July 2020. The first outcomes became available in December 2020. The trial attempts to clarify the delivery of PC at the end of life through the implementation of a web-based training course among Iraqi nurses in the pediatric field. The study strengths include the usual practice setting, staff training, readiness of staff to participate in the study, and random allocation to the intervention. However, participants may drop out after being transferred to another department during the study period. ClinicalTrials.gov NCT04461561; https://clinicaltrials.gov/ct2/show/NCT04461561. PRR1-10.2196/23783.

Background The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child’s home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. Methods We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0–18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. Results The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children’s mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. Conclusions Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.

Purpose Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. Methods Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. Results Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation ( p  = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment ( p  = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p  = 0.009) Conclusion Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.