Background:Home is often cited as preferred place of death in the United Kingdom and elsewhere. This position, however, usually relies on data concerning adults and not evidence about children. The latter data are scant, primarily retrospective and from parents.Aim:To review the literature on preference for place of death for children and young people with life-limiting or life-threatening illnesses.Design and data sources:The databases MEDLINE, CINAHL and EMBASE were searched from 2004 to 2012, as well as bibliography, key author and grey literature searches. Policy documents, empirical, theoretical and peer-reviewed studies and conference abstracts were included. Articles were assessed for study quality.Results:Nine studies were included from five countries. Six reported a majority of parents (only one study interviewed adolescents) expressing preference for death at home. Other studies differed significantly in their findings; one reporting 35.1% and another 0% preferring death at home. Some parents did not express a preference. Six of the studies included only parents of children who died from cancer while being treated at tertiary centres that offered palliative care services. Such results cannot be generalised to the population of all life-limiting and life-threatening illnesses. Furthermore, the methods of the studies reviewed failed to accommodate the full range and dynamic character of preference.Conclusion:The evidence base for current policies that stress the need to increase home death rates for children and young people with life-limiting and life-threatening conditions is inadequate. Further rigorous research should collect data from parents, children and siblings.

BackgroundEarly engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life‐limiting condition (LLC). However, most families have little knowledge or experience of ACP.ObjectiveTo investigate how parents of children and young people with LLCs approach and experience ACP.MethodsOpen‐ended, semi‐structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.ResultsParents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.DiscussionThis study highlights that parents’ approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents’ approaches to particular decisions rather than to drive to closure prematurely.

Background:Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown.Aim:To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP).Design:We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database.Setting:Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6–10 months previously having received care from the service (Group B; N = 73).Results:Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family–clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13–14.00); p < 0.0005). Qualitative findings also indicated that clinicians’ perceptions of families’ wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation.Conclusion:We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies.

Published, controlled evidence on the pharmacological interventions for pain in CYP with LLCs is limited. The evidence that is currently available evaluated pain largely as a secondary outcome and the drugs used were all adjuvants and not always commonly used in general paediatric palliative care for pain. Based on current data this systematic review is unable to determine the effects of pharmacological interventions for pain for CYP with LLCs. Future trials with larger populations should examine the effects of the drugs commonly used as analgesics; with the rising prevalence of many LLCs this becomes more necessary.

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Background Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio‐recorded consultations the kinds of information they seek. Methods Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. Results Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high‐risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents’ desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. Conclusion Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.

Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.