Child; Hospice Care; Only Child; Female\; Human\; Male\; Questionnaires\; Thematic Analysis\; Child Mortality\; Child\; Emotions\; Family Centered Care\; Family Support\; Health Care Delivery\; Internet-Based Intervention\; United Kingdom\
Description
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
advance care planning; Antenatal diagnosis; family centred care; family nursing; hospice care; Humanism; Humanities; Humans; maternal-child nursing; palliative care; perinatal care
Description
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
pediatric; palliative care; death; nursing; family-centered care; evidence-based practice; moving and lifting patients; professional education
Description
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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 (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies. REVIEW METHODS: Studies were appraised and synthesised 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, multi-generational 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. This article is protected by copyright. All rights reserved.
bereavement; palliative care; hospice care; grief; child; family nursing; grandparents
Description
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.
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.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).