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.

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.

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.

'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.

A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms.

BACKGROUND: Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families. OBJECTIVE: To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation. DESIGN: A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams. METHOD: A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach. RESULTS: Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices. CONCLUSION: Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.

The Prevalence of Nonprescription Cannabinoid-Based Medicines in British Children's Hospices: Results of a National Survey.

Background: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil (CO), are being used by families with increasing frequency to manage distressing symptoms. The use of most nonprescription CBMs in the United Kingdom remains illegal. Objective: The objective of the study was to identify the prevalence of CO use by families who use children's hospices in the United Kingdom, and the approaches taken by those services to manage it. Design: An electronic survey was sent to each of the 54 children's hospices in the United Kingdom between May and July 2018, comprising 10 questions. Results: Forty children's hospices from across the four countries of the United Kingdom responded to the survey, representing 74% of British children's hospices. About 87.5% of hospices knew of children who use CO therapeutically. Sixty-nine percent of those hospices have received requests to administer CO during an episode of care. Approaches by organizations around CO management varied across the sectors, including arrangements for storage, administration, and recording of its use. Hospices highlighted how the lack of available guidance made decision making more challenging. Only a third of responding organizations routinely questioned families about the use of cannabis when prescribing medicines. Conclusion: CO is used extensively by children who use children's hospices. Despite recognizing the use of CO, many hospices are unable to support it. There is a need for clear guidelines on how hospices should approach the care needs of children, allowing hospices to meet the needs of children who use CO, and families in a safe, consistent, and relevant way, safeguarding all children, families, and professionals within the organization.

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.

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.