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Objective: Citizen science with young people is becoming increasingly popular, and understanding their experience is valuable as it can improve research through improved participant motivation/ retention, alongside greater insight. The participants can benefit through opportunities to improve self-efficacy, learning, communication, and relationships. However, studies that explore young people's experience of participating in citizen science have not been synthesised. Methods: This qualitative thematic synthesis aimed to combine the literature on young citizen scientists' experience of participating in citizen science research studies. Seven databases, Google Scholar and The Journal of Citizen Science Theory and Practice were searched from 2012 to January 2022 and updated in May 2023. The screening included identifying articles by scanning titles and abstracts and, finally, full texts and selecting the articles using inclusion and exclusion criteria. The study findings were synthesised using inductive thematic synthesis (Prospero registration CRD42022299973). Results: Out of 3856 identified articles, 33 studies focusing on the participant experience were included in the synthesis. These papers were coded inductively. The resulting analytical structures were discussed and finalised. The researchers identified three main themes representing aspects of participant experience: relationships, power and personal growth, and three interwoven connecting themes: communication, self-efficacy and decision-making. An illustration of this would be communication bridging relationships and personal growth. As the citizen scientists' communication skills developed through personal growth, their relationships changed both with the project, with the researchers and with wider stakeholders outside the project such as school staff. Conclusion: These findings provide a comprehensive understanding of participant experience and how this can be used to inform future citizen science projects to facilitate a positive participant experience. [ABSTRACT FROM AUTHOR]

Care after the death of a child and support of their bereaved family is an important element of the services offered by children's hospices in the United Kingdom. The study aims to explore the emotional challenges of those delivering care to families of children in hospice cool rooms. An internet-based questionnaire was sent to all practitioners to explore their perspectives of providing care to bereaved families whilst the child's body was in the hospice, as well as caring for a child's body after death. In total, 94.9% (n = 56) of staff responded. Two key themes were identified that represent the emotional challenges perceived by staff: the impact of deterioration of a child's body; and witnessing the acute grief of families. Practitioners seek to provide care that recognises the importance of family and demonstrates family-centred care, as well as supporting families to deal with the changes that occur after death. Organisations can support practitioners to deliver care in cool rooms by providing training and education on anticipating and managing the pathophysiological changes that occur after death as well as training in grief and loss, and how to support a bereaved family. [ABSTRACT FROM AUTHOR]

Introduction: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life‐limiting or life‐threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question "what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?" Methods: An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Results: Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life‐limiting or life‐threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent–professional and interprofessional relationships. Conclusion: Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life‐limiting or life‐threatening condition. The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. Clinical relevance: The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death. [ABSTRACT FROM AUTHOR]

The infrequency of sudden deaths in infancy and childhood means that professionals have limited exposure, making it difficult to gain experience and feel confident in their role. This meta-synthesis aims to synthesise qualitative research on the experience of professionals responding to cases of sudden or unexpected death. A systematic literature search was conducted using Academic Search Complete, CINHAL, Embase, psycINFO, PubMed and Web of Science, identifying ten papers for inclusion. Studies were appraised and synthesized using the principles of meta-synthesis. Four superordinate themes were identified: perceptions of role, experience on scene, approaches to coping, and barriers to support. Findings suggest the way responders perceive their role and their experience on scene affect the approach taken to tasks and coping strategies used. The complexity of experience is often not acknowledged by responders or their colleagues. Experiences are compounded by cumulative factors which were expressed by different professional groups and across settings. Several barriers relating to workforce culture within organisations were identified, alongside the implications these have on staff wellbeing and the impact on bereaved families. [ABSTRACT FROM AUTHOR]

The care needs of babies, children and young people who use children's hospices have changed over the last decade, with children living for longer, with more complexity. Children's hospice workforces have evolved to continue to meet these needs, including a growth in the number of nurses working at specialist and advanced levels, particularly prescribing. A 15-question survey was sent to all 54 UK children's hospices, which aimed to explore the impact of independent nurse prescribing, and specialist and advanced level nursing practice in UK children's hospices. Forty-one organisations responded, representing 76% of UK children's hospices. Increased autonomy and the ability to respond to the dynamic needs of families, and enabling family choice was recognised and valued by prescribers. Challenges included the breadth of needs of children with life-limiting conditions, and the use of medicines that are either unlicenced or used off-licence. Access to clinical supervision and continuing professional development were highlighted as enablers of prescribing practice. [ABSTRACT FROM AUTHOR]

Background: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. Aim: To develop a dependency tool that enables the hospice to safely and effectively manage the use of beds for planned short breaks (respite care), preserving capacity for children requiring symptom management and end-of-life care. Methods: A comprehensive literature review and existing tools were used to inform the development of the Martin House Dependency Tool Framework. Training was provided to staff and the tool was piloted before applying it across the hospice caseload. Findings: The tool has been used on 431 children (93.1% of caseload). The tool enabled consistency of assessment and more effective management of resources, due to a contemporaneous understanding of the clinical needs of those on the caseload. Conclusion: The tool has enabled consistent and transparent assessment of children, improving safety, effectiveness and responsiveness, and the management of the workforce and resources. [ABSTRACT FROM AUTHOR]

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support. [ABSTRACT FROM AUTHOR]

There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal services, and children's hospices. The aim of this study was to answer the question “What are the benefits and barriers to family-centered perinatal advance care planning from the perspective of professionals involved in the care of neonates and infants with life-limiting conditions?” Three focus groups comprising hospice practitioners were held across the UK. A lack of awareness of the role of hospices was described as the biggest barrier to referral to hospice services. Practitioners unanimously described having a physical presence alongside teams, as being the biggest contributor to improved multiagency working, facilitated through joint working and education provision. Early referral to hospice services, in parallel with curative services led to better outcomes and experiences of families, according to participants. [ABSTRACT FROM AUTHOR]

Competing Interests: Competing interests: MJT is an editor of Evidence-Based Nursing.

Competing Interests: Competing interests: MJT is an editor of Evidence-Based Nursing.

Competing Interests: Competing interests: Michael is an editor of Evidence-Based Nursing.

Competing Interests: Competing interests: None declared.

Competing Interests: Competing interests: None declared.