When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents

OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care. DESIGN: Thematic analysis of incidental data from a larger grounded theory study. SETTING: Four Australian PICUs. SUBJECTS: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. CONCLUSIONS: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs

An exploratory qualitative study of health professional perspectives on clinical outcomes in UK orthotic practice

Background: Despite potential savings to the National Health Service, the collection of data on outcomes of NHS orthotic services is patchy. Indeed, several reports into orthotic services in the UK have reported a lack of data relating to outcomes of care and highlighted the need to routinely measure outcomes to demonstrate efficacy of services. Whilst a previous study provided an overview of the use of outcome measures in orthotic practice and identified some barriers to their use, further questions emerged. Hence, this qualitative study aimed to explore orthotists’ opinions and personal experiences on the influences on outcomes, how appropriate and relevant outcomes can be measured and also how barriers to the use of outcome measures can be overcome. Methods: Following a review of the literature, an initial advisory group informed semi-structured questions. These were used to create dialogue in a focus group of 12 orthotists. Data from the focus group was transcribed verbatim and analysed using thematic analysis, creating themes and subthemes for discussion. Results: The setting of realistic and agreed goals through managing expectations, compromise and patient education/information were seen as factors that could inform and improve outcomes. Barriers to the collection of outcome measures were associated with inadequate technology to manage the data, lack of time to complete them, lack of training in them and difficulties selecting appropriate outcome measures for patients with complex problems managed by different health professionals. The participants discussed ways of addressing these barriers, such as the use of ‘snapshots’ and delegation of data collection. Conclusions: This study has revealed that measuring outcomes is considered to be an important activity. In order to achieve good outcomes, it is important to address patient expectations, discuss and establish joint goals for care at the outset and inform and include patients in the decision-making process. The identified barriers to measuring outcomes can be overcome with the solutions revealed by these participants. Hence, this study has contributed to current knowledge which has relevance for clinical practice and may provide the theoretical basis for future research

Looking inside the black box: connected students and university decisions

Purpose: Review and evaluate decision making models to establish if they adequately reflect the journey of prospective full-time postgraduate students. Method: Review of literature, followed by primary research. A qualitative approach consisting of 7 focus groups (total of 49 students) and 5 unstructured interviews. Judgemental/purposive sampling method. Findings: Rational and emotional elements found that suggested a limited few have a back and forth approach. Different application patterns were found, but no evidence this changed their decision journey. High usage of and reference to WOM/e-WOM. Implications: Although some non-linear & emotional elements were found, there is insufficient evidence to suggest that a more circular approach is relevant to Higher Education decision making

Playing with nonuniform grids

Numerical experiments with discretization methods on nonuniform grids are presented for the convection-diffusion equation. These show that the accuracy of the discrete solution is not very well predicted by the local truncation error. The diagonal entries in the discrete coefficient matrix give a better clue: the convective term should not reduce the diagonal. Also, iterative solution of the discrete set of equations is discussed. The same criterion appears to be favourable.

Estuarine Infauna Within Incidentally Retained Sediment in Artificial Rockpools

Artificial coastal structures (ACSs) are primarily designed to provide services for human use, such as flood defence or shipping, and are generally poor for marine biodiversity. Consequently, there has been significant research effort to enhance these hard structures to increase biodiversity and habitat availability via eco-engineering. On seawalls and breakwaters, this has included the creation of habitats for benthic species found on natural rocky shores, including the provision of cracks, crevices and water retaining features, such as artificial rockpools. When sediment retention in these features has occurred, it has often been deemed detrimental to the overarching aim of the intervention. Yet, it is soft sediment habitat that is impacted the most through coastal construction. As ecological enhancement of a flood defence scheme, nine concrete retrofit rockpools were installed at three different tidal elevations between mean high water neap tide and mean tide level on steel sheet piling on the Arun Estuary in Littlehampton Harbour, United Kingdom, which naturally filled with mud 1 year after installation. To explore how analogous the faunal assemblages and sediment profile of rockpool mud were to two local mudflats, core samples were taken and analysed for species richness, abundance, biomass, assemblage structure, median grain size, and organic matter content. More benthic species were observed in the artificial rockpool than in the local mudflats. Although the rockpools were placed at higher tidal levels than the lower shore mudflat, their assemblage structure and species richness were more similar to the lower shore mudflat at the base of the sheet piling than the upper shore mudflat. This study demonstrates that retained sediment within eco-engineered features on hard ACSs can create habitat for benthic assemblages. Providing sediment-retentive features on ACSs has the potential to provide a novel eco-engineering option that may be appropriate for some heavily modified waterbodies on sheltered, depositional coasts

Inhibition of Sec61-dependent translocation by mycolactone uncouples the integrated stress response from ER stress, driving cytotoxicity via translational activation of ATF4

Mycolactone is the exotoxin virulence factor of Mycobacterium ulcerans that causes the neglected tropical disease Buruli ulcer. We recently showed it to be a broad spectrum inhibitor of Sec61-dependent co-translational translocation of proteins into the endoplasmic reticulum (ER). An outstanding question is the molecular pathway linking this to its known cytotoxicity. We have now used translational profiling to better understand the reprogramming that occurs in cells exposed to mycolactone. Gene ontology identified enrichment in genes involved in cellular response to stress, and apoptosis signalling among those showing enhanced translation. Validation of these results supports a mechanism by which mycolactone activates an integrated stress response meditated by phosphorylation of eIF2α via multiple kinases (PERK, GCN, PKR) without activation of the ER stress sensors IRE1 or ATF6. The response therefore uncouples the integrated stress response from ER stress, and features translational and transcriptional modes of genes expression that feature the key regulatory transcription factor ATF4. Emphasising the importance of this uncoupled response in cytotoxicity, downstream activation of this pathway is abolished in cells expressing mycolactone-resistant Sec61α variants. Using multiple genetic and biochemical approaches, we demonstrate that eIF2α phosphorylation is responsible for mycolactone-dependent translation attenuation, which initially protects cells from cell death. However, chronic activation without stress remediation enhances autophagy and apoptosis of cells by a pathway facilitated by ATF4 and CHOP. Our findings demonstrate that priming events at the ER can result in the sensing of stress within different cellular compartmentsWellcome Trus

Bereaved parents' experiences of research participation

Background: As understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents’ experiences of the research process are limited within the current literature. Methods: We aimed to explore bereaved parents’ experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents’ responses were analysed using descriptive content analysis. Results: Our findings demonstrate that despite being emotionally difficult, parents’ overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12–24 months after their child’s death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial. Conclusions: Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research

Gradually Disengaging: Parent-Health care Provider Relationships After a Child's Death in the Pediatric Intensive Care Unit

When a child dies in the intensive care unit, many bereaved parents want relationships with their child’s health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents’ bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement

Structure determination, thermal stability and dissolution rate of 6-indomethacin

The structure solution of the δ-polymorph of indomethacin was obtained using three-dimensional electron diffraction. This form shows a significantly enhanced dissolution rate compared with the more common and better studied α- and γ-polymorphs, indicating better biopharmaceutical properties for medicinal applications. The structure was solved in non-centrosymmetric space group P21 and comprises two molecules in the asymmetric unit. Packing and molecule conformation closely resemble indomethacin methyl ester and indomethacin methanol solvate. Knowledge of the structure allowed the rational interpretation of spectroscopic IR and Raman data for δ-polymorph and a tentative interpretation for still unsolved indomethacin polymorphs. Finally, we observed a solid–solid transition from δ-polymorph to α-polymorph that can be driven by similarities in molecular conformation

The intrinsic primary bioreceptivity of concrete in the coastal environment – A review

The proliferation of artificial concrete structures (ACSs) in the marine environment causes intertidal habitat loss and is a poor surrogate for natural rocky shores in terms of species richness, abundance, and community composition. As hard engineered coastlines increase, there is growing interest in how new concrete structures can facilitate improved habitat and biodiversity compared to existing concrete structures. Experiments that have substituted cement binder and aggregates in varying proportions and combinations have demonstrated that it is possible to enhance the primary bioreceptivity of concrete, either chemically or via microtopographical texture. This review synthesises key literature and identifies which concrete formulas prove most effective at enhancing bioreceptivity and those that have limited value, providing recommendations for coastal practitioners and for formulas that warrant further study. It is evident that the efficacy of chemical bioreceptivity of concrete is likely to be spatio-temporally limited (months) and enhancing surface roughness should be prioritised as a way to enhance colonisation. However, both chemical and physical methods require further investigation in within in situ marine settings for longer durations (>12 months)