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BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a telemedicine programme. METHODOLOGY: This is a qualitative study of narrative design. Ten interviews were conducted with family members and professionals who had been using telemedicine for a year. Sampling was intentional and a discourse and content analysis was conducted. RESULTS: Six thematic categories emerged from the analysis of the interviews: degree of satisfaction; usefulness; benefits according to patient needs and attention; technical and human difficulties; and implantation of the system and proposals for improvement. CONCLUSIONS: The study shows that telemedicine is a very useful complementary tool for healthcare professionals in a palliative care context. It is necessary to take into account the perception and needs of both families and healthcare professionals with regard to this tool since it can improve patient care.

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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.

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BACKGROUND: Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a fundamental aspect of PPC and understanding nurses' experiences is imperative to the provision and development of quality holistic child-centred services. AIM: To review nurses' experiences of providing palliative care for children with life-limiting conditions. METHOD: A systematic database search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Ovid Medline and Scopus was undertaken. Key words consisted of 'palliative care' or 'terminal care' or 'dying' or 'end-of-life care' and children* or paediatric* or pediatric* and 'nurs* experience*' or 'nurs* view*' or 'nurs* perspective*' or 'nurs* feeling*'. Inclusion criteria included peer-reviewed studies published between 2016-2023 in the English language. FINDINGS: A thematic approach was adopted with the 11 papers selected for the review and each study critically analysed to identify three recurring themes. The themes included: 'a broken wreck', 'makes a life worth living' and 'challenges in doing 100%'. Findings point to mixed feelings among nurses in providing PPC and suggest that nurses experience emotional distress when caring for dying children. With appropriate supports and inspiration from their paediatric patients, nurses are determined to provide a 'good death' for the children in their care. Nevertheless, the perceived lack of knowledge and experience, communication struggles and personal dilemmas can be predisposing factors in triggering negative experiences among nurses when providing palliative care for children with life-limiting conditions. RECOMMENDATIONS: Education and policy development is required to meet the practice needs and support the emotional needs of nurses engaged in PPC. Further research is required to generate PPC evidence-based nursing interventions. In doing so, high quality PPC practice will be promoted, thereby ensuring high quality PPC for the children and their families.

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BACKGROUND: Palliative care is a challenging specialty, especially when it comes to caring for children with serious life-limiting conditions and supporting their families. Workers face significant challenges and experience major impacts on their wellbeing. We conducted a qualitative study to understand the sources of stress in the palliative care team, their work expectations, and how they can cope with the demands. METHODS: We used an online questionnaire about the causes of stress, the impact of the COVID-19 pandemic and the ways in which support is needed in the workplace. RESULTS: Of the 56 palliative care professionals who participated in the survey, 57.1% considered the main causes of stress to be high workload, difficult emotional burdens (55.4%) affecting their outlook on life (61.2%), the death of patients (46.4%), and communication with patients' families (26.8%). The COVID-19 pandemic increased stress levels for the majority of respondents (89.3%). The need for specialised training (53.6%), support groups, psychological counselling and adapted organisational policies was highlighted. CONCLUSIONS: The study demonstrates the importance of understanding the needs of both paediatric and adult palliative care staff in order to provide optimal care and support their balance in this demanding area of the healthcare system.

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OBJECTIVES: Caregiver burden often goes unrecognised and can substantially affect caregivers' physical, psychological and financial well-being, thereby impacting quality of care. This study investigates burden among caregivers of children with chronic medical conditions in a tertiary care hospital in Pakistan. The study aims to assess the extent of burden, explore influencing factors and recommendations for interventions. DESIGN: Mixed-methods study, comprising of an in-person paper-based survey, employing the Zarit Burden Interview scale to assess burden scores. Qualitative component included thematic analysis of semi-structured in-depth interviews with caregivers. PARTICIPANTS: 383 caregivers of children admitted to the inpatient paediatric services at our tertiary care centre were surveyed. In-depth interviews were conducted with 19 caregivers. RESULTS: The survey revealed a mean burden score of 35.35±15.14, with nearly half of the participants (46%, n=177) experiencing mild burden, while 37% (n=140) reporting moderate-to-severe burden. The most common diagnosis was cancer (24%, n=92), while the highest burden (42.97±15.47) was noted for congenital cardiac disease. Greater burden was significantly associated with lower caregiver education, young age of the child at diagnosis and increased number of hospital visits (p<0.05). Caregivers highlighted financial strain, psychosocial effects and impact on lifestyle and relationships as key challenges. They emphasised the need for improved medical coordination, financial support and enhanced hospital services. CONCLUSIONS: The study elucidates the multifaceted nature of caregiver burden in the context of paediatric chronic illnesses in Pakistan. Interventions should emphasise financial aid, educational support and development of system-level changes to improve access to resources and medical care coordination. These insights call for policy and practice integration to support caregivers effectively.

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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.

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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.

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BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.

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AIM: Given the multifaceted nature of paediatric palliative care (PPC), integrative medicine and mind-body therapies, in particular, are increasingly used in this setting. However, to our knowledge, their use in PPC has never been specifically reviewed. Therefore, this work aims to provide a comprehensive overview of the application and possible beneficial effects of mind-body therapies in the PPC setting. METHODS: Papers about the use of meditation and mindfulness, biofeedback, hypnosis, yoga, tai chi and qi gong, imagery, creative outlets, and art therapy in PPC were identified by browsing PubMed and CINHAL. RESULTS: We found that the harmless nature of mind-body therapies has been extensively described, and available studies consistently show some benefits on the anxiety, stress, and quality of life of parents/caregivers and healthcare providers. However, well-grounded and robust evidence does not fully support the efficacy of mind-body therapies, especially in patients. CONCLUSION: Considering the peculiarity of the PPC setting, we suggest that mind-body therapies should be further considered and properly investigated through larger controlled studies and according to the different populations of PPC children, as well as for parents, caregivers, and healthcare professionals.

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AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review and metasynthesis. METHODS: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. DATA SOURCES: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options. RESULTS: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. CONCLUSION: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. IMPACT: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. REPORTING METHOD: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. PATIENT OR PUBLIC CONTRIBUTION: No patient or Public Contribution.

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BACKGROUND: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination. AIM: To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care. DESIGN: A qualitative systematic review using a meta-synthesis approach was conducted. DATA SOURCES: Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included qualitative and mixed-method studies that reported the perceptions and associations of siblings of patients receiving paediatric palliative care. Data were synthesised using thematic analysis. RESULTS: Eleven studies were included. The overarching theme of the review would be 'A walking shadow: Living in the darkness shaped by the dying sibling', and three key themes and nine subthemes were identified from the included articles: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping. CONCLUSION: Siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them.

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OBJECTIVE: This paper examines question-response sequences, in which clinicians asked questions to child patients who appear to interact using means other than the verbal mode of communication. METHODS: Conversation Analysis methods were used to study questions in 46 paediatric palliative care consultations. These questions were directed towards children who observably used vocalisations and embodied modes of communication (e.g., gaze, gesture and facial expressions) but did not appear to use the verbal mode. RESULTS: Most questions asked children either about their willingness and preferences for a proposed next activity, or their current feelings, experiences or intentions. Questions involved children by foregrounding their preferences and feelings. These questions occasioned contexts where the child's vocal or embodied conduct could be treated as a relevant response. CONCLUSION: This paper demonstrates how questions are used to involve children in consultations about their own healthcare, and how their views come to be understood by clinicians and family members, even when children interact using means other than the verbal mode of communication. PRACTICE IMPLICATIONS: Questions can be asked of both children who do and do not verbally communicate. When asking questions, clinicians should be mindful of the modes of communication an individual child uses to consider how the child might meaningfully respond.

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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.

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BACKGROUND: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. OBJECTIVE: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. METHODS: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. RESULTS: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). CONCLUSION: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.

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Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.

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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.

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A case study of a 9-year-old child with complex pain secondary to metastatic liver cancer, who eventually required intrathecal drug delivery (ITDD) of analgesia. Multi-modal symptom control strategies were deployed to achieve the child's and parental wishes for end-of-life care (EoLC) at home using ITDD. The following recommendations are made for nursing practice in paediatric palliative care (PPC); rigorous risk assessment, exemplary communication with the identification of a coordinating team, timely training needs assessment and the delivery of training from hospital based experts in ITDD practice, comprehensive symptom management plan and 24/7 access to specialist palliative care teams were essential for safe nursing practice. In this case, robust risk assessment and mitigations enabled challenges to be safely addressed with a successful outcome, extending the boundaries of PPC home care.

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BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.

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INTRODUCTION: Cancer is a leading cause of death globally with childhood cancers accounting for around 5% of the total incidence. Almost 90% of childhood cancers are recorded from low-income and lower-middle-income countries (LLMICs), where survival rates are comparatively low. The unavailability of essential medicines for childhood cancers is identified as a reason for this observed health inequity. The objectives of this review are to describe the availability of cytotoxic medicines in the WHO essential medicine list (EML) used in treating children with cancer in LLMICs and to determine the enablers and barriers to accessing WHO essential medicines for childhood cancer. METHODS AND ANALYSIS: A systematic review will be conducted using electronic databases: MEDLINE, EMBASE and CINAHL. Additional articles and grey literature will be searched in Google Scholar and reference list of the selected articles. It will include primary studies, national/regional reports and policy documents. Review questions will be framed into different components according to the ECLIPSe framework. Children less than 19 years of age diagnosed with any malignant disorder in LLMICs will be the client group. Studies that have focused on the availability of EML for adult malignancies and care providers' knowledge of EML for childhood malignancies will not be considered. Only the studies reported in the English language will be included. Mixed methods Appraisal Tool will be used to assess the quality of included studies. Data will be presented as a narrative synthesis. ETHICS AND DISSEMINATION: This research is exempt from ethics approval because the work is carried out on published documents. Findings of this review will be disseminated through a peer-reviewed journal for the authorities in LLMICs to understand the magnitude of the problem and to identify enablers and barriers to take evidence based decisions to improve their health system. PROSPERO REGISTRATION NUMBER: CRD42022334156.

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BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task. AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care. METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used. FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care. CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.

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