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.

UNASSIGNED: 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.
UNASSIGNED: To review nurses\' experiences of providing palliative care for children with life-limiting conditions.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.

OBJECTIVE: 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.
METHODS: 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.
METHODS: 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.

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.

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.
CONCLUSIONS: 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.

UNASSIGNED: 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.
UNASSIGNED: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives.
UNASSIGNED: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025).
UNASSIGNED: 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).
UNASSIGNED: 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.
UNASSIGNED: 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.

UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.

This research critically explores deficiencies in the palliative care system, focusing on evaluation and treatment aspects for both adult and paediatric patients. Using a qualitative methodology, the study engages healthcare professionals and family caregivers to uncover perspectives on the existing state of palliative care. Conducted through three focus groups and a semi-structured in-depth interview with participants recruited from Virgen de la Arrixaca University Clinical Hospital, this research illustrates critical issues, highlighting the insufficient healthcare workforce and resources to meet the comprehensive needs of patients and their families. Recommendations include holistic care addressing social, emotional, psychological, socio-familiar, and economic dimensions, supported by embedded support groups and the enforcement of relationships with palliative associations. This study also advocates for improved health institutional coordination, social worker support, and ongoing health professional satisfaction monitoring. In paediatric care, specific demands involve specialised units, medical team continuity, 24 h paediatrician care, and a more professional paediatric approach. Beyond problem identification, this study offers valuable insights for shaping health policies and tools, incorporating new indicators and introducing grief bereavement support in clinical reports, contributing to the advancement of patient evaluation in palliative care.

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.
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.
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.
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.

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.
CONCLUSIONS: 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.
CONCLUSIONS: 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.