Reflecting on palliative care for children, young people and their families: a revised model.

The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided has led to challenges for nurses/practitioners striving to provide optimal care for these families. Working in partnership with children and families and reflecting on practice are key issues in providing care and support. Reflective models are frequently used as a tool for two reasons: firstly, to reflect on practice with the aim of quality improvement; secondly, to help practitioners explore difficult or challenging aspects of care negotiated with families. Here, the authors report on a specialised model that has been developed and updated for use within children's palliative care. For reasons of confidentiality, a fictitious case study is used to illustrate how this model could be implemented during a debriefing session following the death of a child. While more research is needed, initial trials of the model by the authors suggests that using specialised reflective models and frameworks can help to facilitate such discussions in children's palliative care.

Perinatal/neonatal palliative care: Effecting improved knowledge and multi-professional practice of midwifery and children's nursing students through an inter-professional education initiative.

This paper presents a study that examines the potential value of a new and innovative inter-professional education (IPE) experience for final year midwifery and children's nursing students focused on improving awareness of end-of-life care for infants in conjunction with the support of their families. The study uses an action research approach to examine midwifery and children's nursing student experiences of an IPE initiative in developing knowledge regarding perinatal/neonatal palliative care. The setting is a Higher Education Institute in the South of England that included final year midwifery students (n = 39) and children's nursing students (n = 34) taking part in the study. Qualitative and quantitative data indicated that the IPE intervention had proven worth in developing knowledge and confidence in the students as both student groupings felt they lacked knowledge and confidence about perinatal/neonatal palliative care before attending the study day. Students felt that learning with, from and about the other profession represented was important in generating their knowledge. Educators should explore innovative ways to enable the further development of the fledgling speciality of perinatal/neonatal palliative care through education on an interprofessional platform.

Living Through the Life-Altering Loss of a Child: A Narrative Review.

The death of a child is a life-altering event for parents, leading to grief that is individual, intense, and long lasting. The grief experienced by parents following the death of their child can affect their relationships and as they sometimes see it, their role within society. Parents can find grief isolating, due to society's lack of understanding of their grief experience. Gendered differences in grief reactions have also been noted. Theoretical understandings of bereavement, now acknowledge parental need "not to let go" but rather to reconstruct relationships with their deceased child in terms of a continuing bond. This narrative literature review draws together theory and research on the topic, highlighting current knowledge and suggesting ways in which children's nurses can support parents as they live through the loss of their child.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis.

AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. DESIGN: Secondary analysis of data using a supra-analysis design to identify commonality of experiences. METHODS: Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. RESULTS: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. CONCLUSIONS: Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. RELEVANCE TO CLINICAL PRACTICE: There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.