Distributed expertise: Qualitative study of a British network of multidisciplinary teams supporting parents of children with chronic kidney disease

© 2014 The Authors. Background: Long-term childhood conditions are often managed by hospital-based multidisciplinary teams (MDTs) of professionals with discipline specific expertise of a condition, in partnership with parents. However, little evidence exists on professional-parent interactions in this context. An exploration of professionals' accounts of the way they individually and collectively teach parents to manage their child's clinical care at home is, therefore, important for meeting parents' needs, informing policy and educating novice professionals. Using chronic kidney disease as an exemplar this paper reports on one aspect of a study of interactions between professionals and parents in a network of 12 children's kidney units in Britain. Methods: We conducted semi-structured, qualitative interviews with a convenience sample of 112 professionals (clinical-psychologists, dietitians, doctors, nurses, pharmacists, play-workers, therapists and social workers), exploring accounts of their parent-educative activity. We analysed data using framework and the concept of distributed expertise. Results: Four themes emerged that related to the way expertise was distributed within and across teams: (i) recognizing each other's' expertise, (ii) sharing expertise within the MDT, (iii) language interpretation, and (iv) acting as brokers. Two different professional identifications were also seen to co-exist within MDTs, with participants using the term 'we' both as the intra-professional 'we' (relating to the professional identity) when describing expertise within a disciplinary group (for example: 'As dietitians we aim to give tailored advice to optimize children's growth'), and the inter-professional 'we' (a 'team-identification'), when discussing expertise within the team (for example: 'We work as a team and make sure we're all happy with every aspect of their training before they go home'). Conclusions: This study highlights the dual identifications implicit in 'being professional' in this context (to the team and to one's profession) as well as the unique role that each member of a team contributes to children's care. Our methodology and results have the potential to be transferred to teams managing other conditions

Demonstration of the spatial separation of the entangled quantum side-bands of an optical field

Quantum optics experiments on "bright" beams typically probe correlations between side-band modes. However the extra degree of freedom represented by this dual mode picture is generally ignored. We demonstrate the experimental operation of a device which can be used to separate the quantum side-bands of an optical field. We use this device to explicitly demonstrate the quantum entanglement between the side-bands of a squeezed beam

Beyond ‘witnessing’: children’s experiences of coercive control in domestic violence and abuse

Children’s experiences and voices are underrepresented in academic literature and professional practice around domestic violence and abuse. The project ‘Understanding Agency and Resistance Strategies’ addresses this absence, through direct engagement with children. We present an analysis from interviews with 21 children in the United Kingdom (12 girls and 9 boys, aged 8-18 years), about their experiences of domestic violence and abuse, and their responses to this violence. These interviews were analysed using interpretive interactionism. Three themes from this analysis are presented: a) ‘Children’s experiences of abusive control’, which explores children’s awareness of controlling behaviour by the adult perpetrator, their experience of that control, and its impact on them; b) ‘Constraint’, which explores how children experience the constraint associated with coercive control in situations of domestic violence, and c) ‘Children as agents’ which explores children’s strategies for managing controlling behaviour in their home and in family relationships. The paper argues that, in situations where violence and abuse occurs between adult intimate partners, children are significantly impacted, and can be reasonably described as victims of abusive control. Recognising children as direct victims of domestic violence and abuse would produce significant changes in the way professionals respond to them, by 1) recognising children’s experience of the impact of domestic violence and abuse; 2) recognising children’s agency, undermining the perception of them as passive ‘witnesses’ or ‘collateral damage’ in adult abusive encounters; and 3) strengthening professional responses to them as direct victims, not as passive witnesses to violence

Road Edge Extraction Using a Plan-View Image Transformation

A new technique to extract road edges in the road-following algorithm for autonomous road vehicle navi-gation is described. It is based on finding road edges on a subsampled plan-view of a portion of the road ahead of the vehicle. The method is illustrated in the real-time identification of road edges using a fast vertical edge de-tector and link operator applied to the transformed plan view. Location of both road edges at 20 frames per sec-ond is demonstrated. Research on autonomous navigation of robot vehicles has been increasing in the last few years 1'2>3. Part of this research consists of identifying the road from a digitised image received by a camera positioned on the robot ve-hicle. The problem of identifying roads to drive an autonomou

Improved Laboratory Transition Probabilities for Neutral Chromium and Re-determination of the Chromium Abundance for the Sun and Three Stars

Branching fraction measurements from Fourier transform spectra in conjunction with published radiative lifetimes are used to determine transition probabilities for 263 lines of neutral chromium. These laboratory values are employed to derive a new photospheric abundance for the Sun: log $\epsilon$(Cr I)$_{\odot}$ = 5.64$\pm$0.01 ($\sigma = 0.07$). These Cr I solar abundances do not exhibit any trends with line strength nor with excitation energy and there were no obvious indications of departures from LTE. In addition, oscillator strengths for singly-ionized chromium recently reported by the FERRUM Project are used to determine: log $\epsilon$(Cr II)$_{\odot}$ = 5.77$\pm$0.03 ($\sigma = 0.13$). Transition probability data are also applied to the spectra of three stars: HD 75732 (metal-rich dwarf), HD 140283 (metal-poor subgiant), and CS 22892-052 (metal-poor giant). In all of the selected stars, Cr I is found to be underabundant with respect to Cr II. The possible causes for this abundance discrepancy and apparent ionization imbalance are discussed.Comment: 44 pages, 6 figure

Risk Factors for Severe Renal Disease in Bardet-Biedl Syndrome

Bardet-Biedl syndrome is a rare autosomal recessive, multisystem disease characterized by retinal dystrophy, renal malformation, obesity, intellectual disability, polydactyly, and hypogonadism. Nineteen disease-causing genes (BBS1-19) have been identified, of which mutations in BBS1 are most common in North America and Europe. A hallmark of the disease, renal malformation is heterogeneous and is a cause of morbidity and mortality through the development of CKD. We studied the prevalence and severity of CKD in 350 patients with Bardet-Biedl syndrome-related renal disease attending the United Kingdom national Bardet-Biedl syndrome clinics to further elucidate the phenotype and identify risk indicators of CKD. Overall, 31% of children and 42% of adults had CKD; 6% of children and 8% of adults had stage 4-5 CKD. In children, renal disease was often detected within the first year of life. Analysis of the most commonly mutated disease-associated genes revealed that, compared with two truncating mutations, two missense mutations associated with less severe CKD in adults. Moreover, compared with mutations in BBS10, mutations in BBS1 associated with less severe CKD or lack of CKD in adults. Finally, 51% of patients with available ultrasounds had structural renal abnormalities, and 35% of adults were hypertensive. The presence of structural abnormalities or antihypertensive medication also correlated statistically with stage 3b-5 CKD. This study describes the largest reported cohort of patients with renal disease in Bardet-Biedl syndrome and identifies risk factors to be considered in genetic counseling

Compound heterozygous RMND1 gene variants associated with chronic kidney disease, dilated cardiomyopathy and neurological involvement: a case report

Background Nuclear gene mutations are being increasingly recognised as causes of mitochondrial disease. The nuclear gene RMND1 has recently been implicated in mitochondrial disease, but the spectrum of pathogenic variants and associated phenotype for this gene, has not been fully elucidated. Case presentation An 11-month-old boy presented with renal impairment associated with a truncal ataxia, bilateral sensorineural hearing loss, hypotonia, delayed visual maturation and global developmental delay. Over a 9-year period, he progressed to chronic kidney disease stage V and developed a dilated cardiomyopathy. Abnormalities in renal and muscle biopsy as well as cytochrome c oxidase activity prompted genetic testing. After exclusion of mitochondrial DNA defects, nuclear genetic studies identified compound heterozygous RMND1 (c.713A>G, p. Asn238Ser and c.565C>T, p.Gln189*) variants. Conclusion We report RMND1 gene variants associated with end stage renal failure, dilated cardiomyopathy, deafness and neurological involvement due to mitochondrial disease. This case expands current knowledge of mitochondrial disease secondary to mutation of the RMND1 gene by further delineating renal manifestations including histopathology. To our knowledge dilated cardiomyopathy has not been reported with renal failure in mitochondrial disease due to mutations of RMND1. The presence of this complication was important in this case as it precluded renal transplantation

A multinuclear solid state NMR, density functional theory and X-Ray diffraction study of hydrogen bonding in Group I hydrogen dibenzoates

An NMR crystallographic approach incorporating multinuclear solid state NMR (SSNMR), X-ray structure determinations and density functional theory (DFT) are used to characterise the H bonding arrangements in benzoic acid (BZA) and the corresponding Group I alkali metal hydrogen dibenzoates (HD) systems. Since the XRD data often cannot precisely confirm the proton position within the hydrogen bond, the relationship between the experimental SSNMR parameters and the ability of gauge included plane augmented wave (GIPAW) DFT to predict them becomes a powerful constraint that can assist with further structure refinement. Both the 1H and 13C MAS NMR methods provide primary descriptions of the H bonding via accurate measurements of the 1H and 13C isotropic chemical shifts, and the individual 13C chemical shift tensor elements; these are unequivocally corroborated by DFT calculations, which together accurately describe the trend of the H bonding strength as the size of the monovalent cation changes. In addition, 17O MAS and DOR NMR form a powerful combination to characterise the O environments, with the DOR technique providing highly resolved 17O NMR data which helps verify unequivocally the number of inequivalent O positions for the conventional 17O MAS NMR to process. Further multinuclear MAS and static NMR studies involving the quadrupolar 7Li, 39K, 87Rb and 133Cs nuclei, and the associated DFT calculations, provide trends and a corroboration of the H bond geometry which assist in the understanding of these arrangements. Even though the crystallographic H positions in each H bonding arrangement reported from the single crystal X-ray studies are prone to uncertainty, the good corroboration between the measured and DFT calculated chemical shift and quadrupole tensor parameters for the Group I alkali species suggest that these reported H positions are reliable

Key informant perspectives on policy- and service-level challenges and opportunities for delivering integrated sexual and reproductive health and HIV care in South Africa

BACKGROUND: Integration of sexual and reproductive health (SRH) and HIV services is a policy priority, both globally and in South Africa. Recent studies examining SRH/HIV integration in South Africa have focused primarily on the SRH needs of HIV patients, and less on the policy and service-delivery environment in which these programs operate. To fill this gap we undertook a qualitative study to elicit the views of key informants on policy-and service-level challenges and opportunities for improving integrated SRH and HIV care in South Africa. This study comprised formative research for the development of an integrated service delivery model in KwaZulu-Natal (KZN) Province. METHODS: Semi-structured in-depth interviews were conducted with 21 expert key informants from the South African Department of Health, and local and international NGOs and universities. Thematic codes were generated from a subset of the transcripts, and these were modified, refined and organized during coding and analysis. RESULTS: While there was consensus among key informants on the need for more integrated systems of SRH and HIV care in South Africa, a range of inter-related systems factors at policy and service-delivery levels were identified as challenges to delivering integrated care. At the policy level these included vertical programming, lack of policy guidance on integrated care, under-funding of SRH, program territorialism, and weak referral systems; at the service level, factors included high client load, staff shortages and insufficient training and skills in SRH, resistance to change, and inadequate monitoring systems related to integration. Informants had varying views on the best way to achieve integration: while some favored a one-stop shop approach, others preferred retaining sub-specialisms while strengthening referral systems. The introduction of task-shifting policies and decentralization of HIV treatment to primary care provide opportunities for integrating services. CONCLUSION: Now that HIV treatment programs have been scaled up, actions are needed at both policy and service-delivery levels to develop an integrated approach to the provision of SRH and HIV services in South Africa. Concurrent national policies to deliver HIV treatment within a primary care context can be used to promote more integrated approaches