‘Get your own house in order’: Qualitative dialogue groups with nonvaccinating parents on how measles outbreaks in their community should be managed

ObjectiveCommunities with high levels of vaccine rejection present unique challenges to vaccine‐preventable disease outbreak management. We sought perspectives of nonvaccinating parents to inform public health responses in such communities.MethodsNineteen purposively sampled nonvaccinating Australian parents participated in one of seven online dialogue groups. We asked what they thought parents, school principals and public health professionals should do in a hypothetical school measles outbreak and used a framework approach to data analysis.ResultsParents'' views were grounded in strong beliefs in parental responsibility and the belief that vaccines are not effective, thus unvaccinated children do not therefore pose a threat. They then reasoned that the forced exclusion of unvaccinated children from school in a measles outbreak was disproportionate to the risk they pose, and their child''s right to education should not be overridden. Nonvaccinating parents judged that all parents should keep sick children at home regardless of disease or vaccination status; that school principals should communicate directly with parents and avoid using social media; that public health professionals should provide information to parents so they can decide for themselves about excluding their children from school; that public health responses should avoid accidental identification of unvaccinated children and that mainstream media should be avoided as a communication tool.ConclusionNonvaccinating parents do not always agree with current Australian approaches to measles outbreak management. Their perspectives can inform approaches to outbreak responses in communities with high levels of vaccine rejection.Patient or Public ContributionWe sought input from individuals who did and did not vaccinate on study design in its early phases. Individual conversations were used deliberately as we felt the group advisory situation may have felt less safe for nonvaccinating parents, given the divisive and often hostile nature of the topic.     

Molecular markers and the pathogenesis of adrenocortical cancer

Adrenal tumors are common, with an estimated incidence of 7.3% in autopsy cases, while adrenocortical carcinomas (ACCs) are rare, with an estimated prevalence of 4-12 per million population. Because the prognoses for adrenocortical adenomas (ACAs) and ACCs are vastly different, it is important to be able to accurately differentiate the two tumor types. Advancement in the understanding of the pathophysiology of ACCs is essential for the development of more sensitive means of diagnosis and treatment, resulting in better clinical outcome. Adrenocortical tumors (ACTs) occur as a component of several hereditary tumor syndromes, which include the Li-Fraumeni syndrome, Beckwith-Wiedemann syndrome, multiple endocrine neoplasia 1, Carney complex, and congenital adrenal hyperplasia. The genes involved in these syndromes have also been shown to play a role in the pathogenesis of sporadic ACTs. The adrenocorticotropic hormone-cAMP-protein kinase A and Wnt pathways are also implicated in adrenocortical tumorigenesis. The aim of this review is to summarize the current knowledge on the molecular mechanisms involved in adrenocortical tumorigenesis, including results of comparative genomic hybridization, loss of heterozygosity, and microarray gene-expression profiling studies.     

The MGMT promoter SNP rs16906252 is a risk factor for MGMT methylation in glioblastoma and is predictive of response to temozolomide

BackgroundPromoter methylation of O⁶-methylguanine-DNA methyltransferase (MGMT) is an important predictive biomarker in glioblastoma. The T variant of the MGMT promoter-enhancer single nucleotide polymorphism (SNP; rs16906252) has been associated with the presence of MGMT promoter methylation in other cancers. We examined the association of the T allele of rs16906252 with glioblastoma development, tumor MGMT methylation, MGMT protein expression, and survival outcomes.MethodsTwo independent temozolomide-treated glioblastoma cohorts—one Australian (Australian Genomics and Clinical Outcomes of Glioma, n = 163) and the other American (University of California Los Angeles/Kaiser Permanente Los Angeles, n = 159)—were studied. Allelic bisulphite sequencing was used to determine if methylation was specific to the T allele. Additionally, we compared the incidence of the T allele between glioblastoma cases and matched controls to assess whether it was a risk factor for developing MGMT methylated glioblastoma.ResultsCarriage of the T allele of the rs16906252 SNP was associated with both MGMT methylation and low MGMT protein expression and predicted significantly longer survival in temozolomide-treated patients with both MGMT methylated and nonmethylated glioblastoma. Methylation was linked to the T allele, inferring that the T variant plays a key role in the acquisition of MGMT methylation. Carriage of the T allele was associated with a significantly elevated risk of developing glioblastoma (adjusted odds ratio, 1.96; P = .013), increasing further when glioblastoma was classified by the presence of MGMT methylation (adjusted odds ratio, 2.86; P = .001).ConclusionsThe T allele of the rs16906252 SNP is a key determinant in the acquisition of MGMT methylation in glioblastoma. Temozolomide-treated patients with the rs16906252 T genotype have better survival, irrespective of tumor methylation status.     

‘When a patient chooses to die at home,that's what they want… comfort,home’: Brilliance in community-based palliative care nursing

Introduction

To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted.

Methods

This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted.

Results

Brilliant community-based palliative care nursing largely involved maintaining normality in patients’ and carers’ lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative ‘normals’.

Conclusion

Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality.

Patient or Public Contribution

Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.