How Grandparents Experience the Death of a Grandchild Who had a Life Limiting Condition.

Traditionally, family-centred, children's hospice care extends to parents and siblings of children with life limiting conditions. Few studies have focused on the needs of grandparents, who play an increasing role in the families of children with life limiting conditions. Aim: To explore the experience of grandparents during the life, and following the death of a grandchild with a life limiting condition. Methods: A purposive sampling technique was used to recruit participants who: (i) identified themselves as fulfilling a grandparenting role; (ii) were bereaved for between six and 24 months; (iii) had a grandchild that died from a life limiting condition. Grandparents who were the principal carers of the deceased grandchild were excluded. Semi-structured, individual, face-to-face interviews were conducted and audiorecorded in participants' own homes. Field notes were taken during and immediately following the interviews. Interviews were transcribed and interpretative phenomenological analysis used to analyse the resultant data. Findings: Seven individuals participated in this study. Findings indicated a number of contextual factors that affected the experience of bereaved grandparents, including intergenerational bonds, identity and perceived changes in role following the death of their grandchild. Bearing witness to the suffering of their child and an inability to 'make things better' were recurrent themes. The essence of grandparents' experiences was interpreted as focusing on fulfilling a parenting role to their child. Conclusions and implications: The research identified that the primary motivation of grandparental support stems from their role as a parent, and not as a grandparent. The breadth of pain experienced by grandparents is complicated by the multigenerational positions they occupy within the family. The transition from before to after death exacerbated the experience of pain. The findings from this study suggest the development of practice to better understand and support grandparents of children with a life limiting condition during life, in addition to bereavement support. Key words: Bereavement, children, family centred care, grandparent, hospice, palliative care

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

YesTraditionally, 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

How do grandparents experience the death of a grandchild following a life limiting condition?

Introduction: Traditionally, bereavement support for families extends to parents and siblings of children who have died following a life limiting condition (LLC). Few research studies have focused on the needs of bereaved grandparents, who are playing an increased role on the care of children with LLCs and their families. This study aimed to explore how grandparents experience the death of a grandchild from a LLC. Methods: A purposive sample of seven participants, who identified themselves as fulfilling a grandparenting role, participated in a semi-structured, in depth face-to-face interview. Transcribed data was analysed using interpretive phenomenological analysis. Ethical approval: Ethical approval was sought and granted by Lancaster University in October 2013. NHS NRES approval was not required as the participants were not the primary carers of NHS patients. Results: Emerging themes indicated a number of contextual factors that affect the experience of bereaved grandparents, including intergenerational bonds, identity and perceived changes in role following the death of their grandchild. Bearing witness to the suffering of their child (the deceased child's parent) and an inability to 'make things better' was a recurrent stressor. The essence of grandparents' experiences was interpreted as being driven by and focused on fulfilling a parenting role. Conclusion and implications: The study identified that the primary motivation of grandparental support stems from their role as a parent, and not as a grandparent. The findings from this study should assist the development of practice to better understand, and therefore support, grandparents of children with a LSC, in addition to bereavement support

Team based learning and nurse education: a systematic review

YesSummary of: Alberti S, Motta P, Ferri P, Bonetti L. The effectiveness of team-based learning in nursing education: A systematic review. Nurse Educ Today. 2021 Feb;97:104721. doi: 10.1016/j.nedt.2020.104721. Epub 2020 Dec 11

Don’t throw the baby out with the bathwater: preserving children’s undergraduate nurse education in the move towards genericism in nursing

Ye

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

YesBackground: Occupancy is commonly used to measure bed management in hospices, however increasing complexity of children and young people, and technology dependence mean 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), 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 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, owing 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

Stakeholder perceptions of dignity therapy for children and young people with life-limiting and life-threatening conditions in the UK

In palliative and end of life care settings supporting people to make sense of their lives is as important as managing disease symptoms. Dignity Therapy is a validated psychotherapeutic intervention designed to bring about a sense of meaning and purpose for individuals at the end of life. Dignity Therapy has primarily been implemented and evaluated in adult palliative care settings. Prior to designing studies that evaluate Dignity Therapy for children and young people with life-limiting and life-threatening conditions, it is essential to establish stakeholders’ perceptions of Dignity Therapy, and whether adaptations would be required for this client group. We aimed to explore the acceptability of Dignity Therapy for children and young people with life-limiting and life-threatening conditions and health professionals, and report findings from our stakeholder activities. Stakeholder consultation activities involved one Death Café and two workshops, with over 80 health professionals, hosted at two hospice settings, and a range of social media activities including feedback from five young people with life-limiting and life-threatening conditions via a closed Facebook group and a twitter chat with 22 contributors. Data included field notes, workshop outputs (‘post-it ideas storm’ and ‘diamond ranking’) and social media postings that were analysed using thematic analysis. Across stakeholders, there was overwhelming support for explicit interventions that support the psychosocial and spiritual needs of children and young people with life-limiting conditions. Dignity Therapy could be a supportive intervention to promote open conversations about life, meaning and purpose and dying, between the child or young person, family members and health professionals, but needs adapting to meet their needs. A tool kit of interventions, appropriate to a range of ages and cognitive abilities was suggested, for example a storybook for young children and a digitalised version of dignity therapy for older children/young people. Collaboration with stakeholders is the first stage in developing, or adapting an existing intervention in a different context, a complex intervention. Our stakeholder consultation highlighted that Dignity Therapy has potential to improve the psychosocial and spiritual wellbeing of children and young people with life-limiting and life-threatening conditions, through recalling memories and thinking about the things that are important to them and what they want to be remember for. Research is now needed to develop and test a Dignity Therapy intervention for children and young people with life-liming and life-threatening conditions in the UK

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

YesIntroduction: 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: 30 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 five 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 counselling 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 centred 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.University of Bradford. Grant Number: DA5151. SURE Research Projec

The role and experiences of responders attending the sudden or unexpected death of a child: a systematic review and meta-synthesis

yesThe infrequency of sudden deaths 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

Sources of emotional challenge for practitioners delivering family centred care after the death of child: an inductive thematic analysis

YesCare 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.Research Development Fund Publication Prize Award winner, May 2021