Meta-synthesis of ethnic minority families' experiences of children's palliative care across developed countries.

OBJECTIVES: Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers' ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children's palliative care (CPC) by answering the question, "What are the experiences of EM families of children's palliative care across developed countries?" METHODS: A systematic search of articles from 6 databases (Scopus, Medline, Web of Science, APA PsycINFO, CINAHL, and Global Health) with no limit to the date of publication. The search was conducted twice, first in June 2022 and again in December 2022. The extracted data were analyzed using thematic synthesis. RESULTS: Eight studies explored the experiences of families of EM in different high-income countries. Four themes were identified: unmet needs leading to communication gaps, accessibility of hospital services and resources, the attitude of healthcare workers, and the need for survival as an immigrant. SIGNIFICANCE OF RESULTS: Overall, the study shows EM families rely heavily on healthcare professionals' cultural competence in delivering palliative care for their children. There is an interplay between EM families' culture, spiritual ties, communication, and social needs from this review. Understanding how to bridge the communication gap and how families use their culture, faith, and spirituality to manage their pain, and grief and improve their quality of life would be extremely beneficial for healthcare practitioners in increasing their support to EM families accessing CPC.

'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition.

BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence. DATA SOURCES: British Nursing Database, CINAHL, Medline, PsycINFO and Embase databases were searched in January 2023. FINDINGS: Relationships between parents and their families and friends, and with professionals influence the needs and experiences of parents, which oscillate between positive and negative experiences, throughout parents' perinatal palliative care journey. Parents highlighted the need for control and a sense of normality relating to their parenting experience. Validation was central to the experience of parents at all stages of parenthood. Relationships between the parent and the baby were unwavering, underpinned with unconditional love. CONCLUSION: Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication.

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey.

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.

Understanding the bereavement experience of grandparents following the death of a grandchild from a life-limiting condition: A meta-ethnography.

AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition. DESIGN: Meta-ethnography. DATA SOURCES: Academic Search Complete CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies (in 2015, updated 2018). REVIEW METHODS: Studies were appraised and synthesized using the principles of meta-ethnography. FINDINGS: Three superordinate themes were identified: 'influence of the relationship with their grandchild', 'influence of the relationship with the grandchild's family' and 'pain'. The simultaneous, multigenerational position of grandparents meant individuals experience emotional pain from witnessing the experience of family members. CONCLUSION: Many factors that contribute to the bereavement experience of grandparents are outside of their control. The roles, positions, and support needs of grandparents need to be acknowledged to better meet their needs as parents, grandparents, and individuals who have experienced a child death.

How Grandparents Experience the Death of a Grandchild With a Life-Limiting Condition.

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.

Meaning making And Generativity In Children and Young people with Life limiting conditions (MAGICYL).

EBN engages readers through a range of Online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

Independent non-medical prescribing in children's hospices in the UK: a practice snapshot.

BACKGROUND: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. AIM: To identify the context of non-medical prescribing in children's hospices in the UK, focusing on the perceived benefits and challenges. METHOD: Internet-based questionnaires were sent to 55 UK children's hospices, exploring the practice and context of prescribing. RESULTS: Of the 55 invited, 20 children's hospices responded to the questionnaire, 14 of which employed a total of 39 non-medical prescribers (NMPs). Sixteen individual NMPs responded, of which half (50%) prescribed to enable the continuation of existing medicines, 37.5% prescribed independently surrounding symptom management and control and 31.3% in end-of-life care. Perceived benefits of prescribing included timely access to medicines, increased efficiency and accuracy in the admissions process and medicine reconciliation and the increased ability to offer choice in the place of palliative and hospice care. Perceived barriers to prescribing surrounded opportunities to develop confidence, defining the scope of practice and the time required to assess, diagnose and treat. CONCLUSION: NMPs are making a significant contribution to the prescribing workforce within hospices; however, a number of challenges need to be addressed to enable hospices to realise the benefits.

Checking nasogastric tube safety in children cared for in the community: a re-examination of the evidence base.

Nasogastric tube feeding is generally considered safe provided a nasogastric aspirate with a pH ≤5.5, which indicates that the end of tube is correctly located in the stomach, can be obtained. When this is not possible, hospital attendance or admission is usually required so that an X-ray can be undertaken to check the tube's position. This practice is based on an interpretation of the evidence that places undue importance on nasogastric aspirate pH testing before every use of a tube that is already in place, with potential negative consequences for children cared for in the community and their families. Following a re-examination of the evidence base, a revised approach is proposed in this article: when a child has a tube in place, provided its position has been confirmed as correct on initial placement using aspirate pH testing, nurses can use checks other than aspirate pH testing, alongside their clinical judgement, to determine whether it is safe and appropriate to use the tube. This proposed revised approach would reduce delayed or missed administration of fluids, feeds and medicines and enable more children to remain at home.

Exploring children and young people's experience of participating in citizen science-A qualitative evidence synthesis.

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.

Child and family experiences of a whole-systems approach to physical activity in a multiethnic UK city: a citizen science evaluation protocol.

INTRODUCTION: Whole-systems approaches are being adopted to tackle physical inactivity. The mechanisms contributing to changes resulting from whole-systems approaches are not fully understood. The voices of children and families that these approaches are designed for need to be heard to understand what is working, for whom, where and in what context. This paper describes the protocol for the children and families' citizen science evaluation of the Join Us: Move, Play (JU:MP) programme, a whole-systems approach to increasing physical activity in children and young people aged 5-14 years in Bradford, UK. METHODS AND ANALYSIS: The evaluation aims to understand the lived experiences of children and families' relationship with physical activity and participation in the JU:MP programme. The study takes a collaborative and contributory citizen science approach, including focus groups, parent-child dyad interviews and participatory research. Feedback and data will guide changes within this study and the JU:MP programme. We also aim to examine participant experience of citizen science and the suitability of a citizen science approach to evaluate a whole-systems approach. Data will be analysed using framework approach alongside iterative analysis with and by citizen scientists in the collaborative citizen science study. ETHICS AND DISSEMINATION: Ethical approval has been granted by the University of Bradford: study one (E891-focus groups as part of the control trial, E982-parent-child dyad interviews) and study two (E992). Results will be published in peer-reviewed journals and summaries will be provided to the participants, through schools or directly. The citizen scientists will provide input to create further dissemination opportunities.

'I no longer feel alone': meeting the needs of bereaved grandparents through a children's hospice support group.

BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. METHODS: Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. FINDINGS: A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. CONCLUSION: Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.

Moving and Handling Children After Death: An Inductive Thematic Analysis of the Factors That Influence Decision Making by Children's Hospice Staff.

Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this specialist area of care, this study aimed to identify the factors that influence decision making when moving and handling children's bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by 1 children's hospice. A total of 94.9% of eligible staff responded (n = 56). An inductive approach to thematic analysis was undertaken, using a 6-phase methodological framework. Three core themes were identified that inform practitioners' perception of the appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision making and variation in practice was identified. Practitioners relied on both analytical and initiative decision making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness and the decisions and behavior of practitioners. The development of a policy and education framework would support practitioners in caring for children's bodies after death, standardizing expectations and measures of competence in relation to moving and handling tasks.

Care after death in children's hospices: recommendations for moving and handling, and for managing physiological deterioration.

BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. AIM: The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. METHOD: An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. FINDINGS: Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. CONCLUSION: Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death.

Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care.

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.

Approaches to community-based palliative care provision by children's hospices in the UK.

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.