Failing the vulnerable: Three new consent norms that will undermine health research with children

The South African National Health Act (No. 61 of 2003) provides a legal framework for the regulation of the health system across the country. Within the Act, section 71 introduces a number of legal norms relating to research or experimentation with human subjects, including research on HIV prevention and treatment. These norms have been criticised for the negative impact they will have on research involving children. This article describes three of the new consent requirements in section 71 of the Act. It shows, using a range of case studies, how important HIV-related research will be halted or undermined if the current provisions are implemented. The article argues that the new consent requirements are out of step with other statutory provisions and ethical guidelines, and as a result they will exclude a large population group – children in diverse settings – from  much-needed  evidence-based healthcare interventions. The article concludes with a clarion call for support of advocacy on this issue with the Minister of Health and the Health Portfolio Committee

Balloon-borne radiometer measurement of Northern Hemisphere mid-latitude stratospheric HNO3 profiles spanning 12 years

Low-resolution atmospheric thermal emission spectra collected by balloon-borne radiometers over the time span of 1990–2002 are used to retrieve vertical profiles of HNO3, CFC-11 and CFC-12 volume mixing ratios between approximately 10 and 35 km altitude. All of the data analyzed have been collected from launches from a Northern Hemisphere mid-latitude site, during late summer, when stratospheric dynamic variability is at a minimum. The retrieval technique incorporates detailed forward modeling of the instrument and the radiative properties of the atmosphere, and obtains a best fit between modeled and measured spectra through a combination of onion-peeling and global optimization steps. The retrieved HNO3 profiles are consistent over the 12-year period, and are consistent with recent measurements by the Atmospheric Chemistry Experiment-Fourier transform spectrometer satellite instrument. This suggests that, to within the errors of the 1990 measurements, there has been no significant change in the HNO3 summer mid-latitude profile

Building motivation to participate in a quality improvement collaborative in NHS hospital trusts in Southeast England: a qualitative participatory evaluation.

OBJECTIVES: This study explores the barriers and facilitators that impact on the motivation of practitioners to participate in a quality improvement collaborative. DESIGN: A qualitative and formative evaluation using a participatory approach, the researcher-in-residence model which embraces the concept of 'coproducing' knowledge between researchers and practitioners using a range of research methods such as participant observation, interviews and documentary analysis. The design, creation and application of newly generated evidence are facilitated by the researcher through negotiation and compromise with team members. PARTICIPANTS: Senior and middle managers, doctors and nurses. SETTING: Two hospitals in Southeast England participating in a Patient Safety Improvement Collaborative and the facilitator (host) of the collaborative, based in Central London. RESULTS: The evaluation has revealed facilitators and barriers to motivation categorised under two main themes: (1) inherent motivation and (2) factors that influence motivation, interorganisational and intraorganisational features as well as external factors. Facilitators included collaborative 'champions,' individuals who drove the quality improvement agenda at a local level, raising awareness and inspiring colleagues. The collaborative itself acted as a facilitator, promoting shared learning as well as building motivation for participation. A key barrier was the lack of board engagement in the participating National Health Service organisations which may have affected motivation among front-line staff. CONCLUSIONS: Collaboratives maybe an important way of engaging practitioners in quality improvement initiatives. This study highlights that despite a challenging healthcare environment in the UK, there remains motivation among individuals to participate in quality improvement programmes as they recognise that improvement approaches may facilitate positive change in local clinical processes and systems. Collaboratives can harness this individual motivation to facilitate spread and adoption of improvement methodology and build engagement across their membership

Building motivation to participate in a quality improvement collaborative in NHS hospital trusts in Southeast England: a qualitative participatory evaluation.

OBJECTIVES: This study explores the barriers and facilitators that impact on the motivation of practitioners to participate in a quality improvement collaborative. DESIGN: A qualitative and formative evaluation using a participatory approach, the researcher-in-residence model which embraces the concept of 'coproducing' knowledge between researchers and practitioners using a range of research methods such as participant observation, interviews and documentary analysis. The design, creation and application of newly generated evidence are facilitated by the researcher through negotiation and compromise with team members. PARTICIPANTS: Senior and middle managers, doctors and nurses. SETTING: Two hospitals in Southeast England participating in a Patient Safety Improvement Collaborative and the facilitator (host) of the collaborative, based in Central London. RESULTS: The evaluation has revealed facilitators and barriers to motivation categorised under two main themes: (1) inherent motivation and (2) factors that influence motivation, interorganisational and intraorganisational features as well as external factors. Facilitators included collaborative 'champions,' individuals who drove the quality improvement agenda at a local level, raising awareness and inspiring colleagues. The collaborative itself acted as a facilitator, promoting shared learning as well as building motivation for participation. A key barrier was the lack of board engagement in the participating National Health Service organisations which may have affected motivation among front-line staff. CONCLUSIONS: Collaboratives maybe an important way of engaging practitioners in quality improvement initiatives. This study highlights that despite a challenging healthcare environment in the UK, there remains motivation among individuals to participate in quality improvement programmes as they recognise that improvement approaches may facilitate positive change in local clinical processes and systems. Collaboratives can harness this individual motivation to facilitate spread and adoption of improvement methodology and build engagement across their membership

What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: a qualitative systematic review.

To critically synthesise qualitative research to understand experiences of supportive care in people affected by brain cancer and their informal caregivers. A qualitative systematic review was conducted according to the Joanna Briggs methodology and has been reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guidelines. Electronic databases were searched by an expert systematic review librarian for all qualitative studies irrespective of research design. All publications were double screened by two reviewers using a pre-determined exclusion and inclusion criteria. The review was managed using Covidence systematic review software. Methodological quality assessment and data extraction were performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories, which created the overall synthesised findings. A total of 33 studies were included which represented a total sample of 671 participants inclusive of 303 patients and 368 informal caregivers. There was a total of 220 individual findings included in this review, which were synthesised into two findings (1) caregivers and patients perceived supports which would have been helpful and (2) caregiver and patient experiences of unmet supportive care needs. This review highlighted the suffering and distress caused by brain cancer and associated treatments. Both patients and their informal caregivers experienced disconnect from themselves in renegotiating roles, and a profound sense of loneliness as the physical deterioration of the disease progressed. Both patients and informal caregivers reported similar unmet needs within the current service provision for brain cancer. However, what is apparent is that current cancer services are provided solely for patients, with little or no consideration to the support needs of both the patient and their informal caregiver. Service re-design is needed to improve care coordination with individualised informational support, implementation of holistic needs assessments for both the patients and their caregivers, better community support provision, improved opportunities for emotional care with early referral for palliative care services. It is recommended that members of the multidisciplinary brain cancer team reflect on these findings to target holistic needs assessments and develop shared self-management care plans for both the patient and the informal caregiver

A pedometer based physical activity self-management program for children and adolescents with physical disability - design and methods of the StepUp study

BACKGROUND: Physical activity affords a wide range of physiological and psychological benefits for children and adolescents, yet many children with physical disabilities are insufficiently active to achieve these benefits. The StepUp program is a newly developed 6-week pedometer-based self-management program for children and adolescents with physical disability. Participants use a pedometer to undertake a 6-week physical activity challenge, with personalised daily step count goals set in consultation with a physiotherapist. The study aims to evaluate the effectiveness of the StepUp program, using a randomised control trial design. METHODS/DESIGN: A target sample of 70 young people with physical disabilities (aged 8-17 years, ambulant with or without aid, residing in Adelaide) will be recruited. Participants will be randomly allocated to either intervention or control following completion of baseline assessments. Assessments are repeated at 8 weeks (immediately post intervention) and 20 weeks (12 weeks post intervention). The primary outcome is objective physical activity determined from 7 day accelerometry, and the secondary outcomes are exercise intention, physical self-worth, quality of life and fatigue. Analyses will be undertaken on an intention-to-treat basis using random effects mixed modelling. DISCUSSION: This study will provide information about the potential of a low-touch and low-cost physical activity intervention for children and adolescents with cerebral palsy. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12613000023752.Carol Maher, Angela Crettenden, Kerry Evans, Myra Thiessen, Monica Toohey and Jim Dollma

'Here be dragons, here be savages, here be bad plumbing: Australian media representations of sport and terrorism

As 'Propaganda Theorists argue, an examination of key discourses can enhance our understanding of how economic, political and social debate is shaped by mainstream media reporting. In this essay we present content and discourse analysis of Australian media reporting on the nexus of sport and terrorism. Examining newspaper reports over a five-year period, from 1996-2001, which included the 11 September 2001 terrorist tragedy in the United States (9/11), provides useful insights into how public discourse might be influenced with regard to sport and terrorism interrelationships. The results of the media analysis suggest that hegemonic tropes are created around sport and terrorism. The distilled message is one of good and evil, with homilies of sport employed in metaphors for western society and its values. The reactions and responses of sport administrators and athletes to terrorist acts and the threat of terrorism to sport are used to exemplify these ideals, providing newspaper readers a context within which to localize meaning and relevance

Sequence organization and molecular cloning of mouse mammary tumor virus DNA endogenous to C57BL/6 mice.

The sequence organization of mouse mammary tumor virus DNA endogenous to the C57BL/6 inbred mouse strain was characterized by Southern blot analysis, utilizing probes specific for particular regions of the mouse mammary tumor virus provirus and by molecular cloning of endogenous mouse mammary tumor virus DNA. The genome of C57BL/6 mice contains three apparently intact, endogenous proviral units; two of these units comprise the Mtv-8 (unit II) and Mtv-9 (unit III) genetic loci that are also present in the DNA of BALB/c mice. The third unit is defined by EcoRI restriction fragments of 10.0 and 8.4 kilobases that contain the 5' and 3' portions of the provirus, respectively. This unit, termed unit XI and encoded by the genetic locus Mtv-17, has not been previously recognized in C57BL/6 DNA, but it can be clearly distinguished from the proviral units at Mtv-8 and Mtv-9 by Southern blot analysis under appropriate conditions. The proviral unit at Mtv-17 is not present in BALB/c DNA. DNAs comprising the entire Mtv-8 locus and the 3' portions of Mtv-9 and Mtv-17 were cloned. Analysis of the cloned DNA revealed no obvious deletions or rearrangements that would render proviral DNA defective; however, these endogenous genes are normally not transcriptionally active

Fluctuations and differential contraction during regeneration of Hydra vulgaris tissue toroids

We studied regenerating bilayered tissue toroids dissected from Hydra vulgaris polyps and relate our macroscopic observations to the dynamics of force-generating mesoscopic cytoskeletal structures. Tissue fragments undergo a specific toroid-spheroid folding process leading to complete regeneration towards a new organism. The time scale of folding is too fast for biochemical signalling or morphogenetic gradients which forced us to assume purely mechanical self-organization. The initial pattern selection dynamics was studied by embedding toroids into hydro-gels allowing us to observe the deformation modes over longer periods of time. We found increasing mechanical fluctuations which break the toroidal symmetry and discuss the evolution of their power spectra for various gel stiffnesses. Our observations are related to single cell studies which explain the mechanical feasibility of the folding process. In addition, we observed switching of cells from a tissue bound to a migrating state after folding failure as well as in tissue injury. We found a supra-cellular actin ring assembled along the toroid's inner edge. Its contraction can lead to the observed folding dynamics as we could confirm by finite element simulations. This actin ring in the inner cell layer is assembled by myosin- driven length fluctuations of supra-cellular {\alpha}-actin structures (myonemes) in the outer cell-layer.Comment: 19 pages and 8 figures, submitted to New Journal of Physic

Understanding the needs and preferences for cancer care among First Nations people: an integrative review.

This systematic review aimed to identify the needs and preferences for cancer care services among Australian First Nations people. An integrative review was conducted. A wide range of search terms were used to increase the sensitivity and specificity of the searches in electronic databases. Methodological quality assessment, data extraction, was conducted independently by two reviewers, and a narrative synthesis was conducted. Forty‐two studies were included. A total of 2965 Australian First Nations adults, both men and women of various ages across the lifespan, were represented; no First Nations children affected by cancer were represented in the studies. Three themes emerged which included: (1) discrimination, racism and trauma, resulting from colonization, directly impacted First National people's cancer care experience; (2) cultural ways of knowing, being and doing are fundamental to how First Nations people engage with cancer care services; and (3) First Nations people need culturally safe person‐centred cancer care services that address practical needs. Most participants represented in this review experienced discrimination, racism and trauma, resulting from colonization, which directly negatively impacted Aboriginal peoples' cancer care experience. While the Optimal Cancer Pathway (OCP) was launched in Australia several years ago, people with cancer may continue to experience distressing unmet care needs. Our team includes both First Nations people, non‐First Nations researchers and healthcare professionals with expertise in cancer care. The researchers employed decolonizing restorative approaches to ensure voice, respect, accountability and reciprocity in this review work. Members of the multidisciplinary team including nurses and policymakers should reflect on these findings, ensure that they have up‐to‐date cultural safety training and stand together with Indigenous and non‐Indigenous cancer leaders to take proactive steps to stamp out and dismantle oppression in health, and safely implement the OCP