Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

Undertaking Sensitive Interviews: Reflections on Interviewing Bereaved Parents

Paediatric palliative care is a rare experience for many GPs. Although they recognise that they have a role to play, and can be is value in providing palliative care, their ability to fulfil this role can be hindered by a lack of role clarity. A qualitative study set in the West Midlands, examined the role of the GP in children's oncology palliative care from the perspective of the GP who had cared for the child receiving palliative scare for cancer at home and the bereaved parent. One-to-one semi-sturcured interviews were undertaken with 18 GPs an 11 bereaved parent following the death. A ground theory data analysis was undertaken: identifying generated themes through chronological comparative data analysis. Reflecting on my experiences working with bereaved families both as a paediatric Macmillan nurse and a researcher, the challenges of undertaking sensitive research, in relation to the vulnerability of the particular group and the nature of questions being asked will be explored.

Dealing with flood damages: will prevention, mitigation, and ex post compensation provide for a resilient triangle?

There is a wealth of literature on the design of ex post compensation mechanisms for natural disasters. However, more research needs to be done on the manner in which these mechanisms could steer citizens toward adopting individual-level preventive and protection measures in the face of flood risks. We have provided a comparative legal analysis of the financial compensation mechanisms following floods, be it through insurance, public funds, or a combination of both, with an empirical focus on Belgium, the Netherlands, England, and France. Similarities and differences between the methods in which these compensation mechanisms for flood damages enhance resilience were analyzed. The comparative analysis especially focused on the link between the recovery strategy on the one hand and prevention and mitigation strategies on the other. There is great potential within the recovery strategy for promoting preventive action, for example in terms of discouraging citizens from living in high-risk areas, or encouraging the uptake of mitigation measures, such as adaptive building. However, this large potential has yet to be realized, in part because of insufficient consideration and promotion of these connections within existing legal frameworks. We have made recommendations about how the linkages between strategies can be further improved. These recommendations relate to, among others, the promotion of resilient reinstatement through recovery mechanisms and the removal of legal barriers preventing the establishment of link-inducing measures.

Genometa - A Fast and Accurate Classifier for Short Metagenomic Shotgun Reads

Metagenomic studies use high-throughput sequence data to investigate microbial communities in situ. However, considerable challenges remain in the analysis of these data, particularly with regard to speed and reliable analysis of microbial species as opposed to higher level taxa such as phyla. We here present Genometa, a computationally undemanding graphical user interface program that enables identification of bacterial species and gene content from datasets generated by inexpensive high-throughput short read sequencing technologies. Our approach was first verified on two simulated metagenomic short read datasets, detecting 100% and 94% of the bacterial species included with few false positives or false negatives. Subsequent comparative benchmarking analysis against three popular metagenomic algorithms on an Illumina human gut dataset revealed Genometa to attribute the most reads to bacteria at species level (i.e. including all strains of that species) and demonstrate similar or better accuracy than the other programs. Lastly, speed was demonstrated to be many times that of BLAST due to the use of modern short read aligners. Our method is highly accurate if bacteria in the sample are represented by genomes in the reference sequence but cannot find species absent from the reference. This method is one of the most user-friendly and resource efficient approaches and is thus feasible for rapidly analysing millions of short reads on a personal computer.

Conflict and Stability in the Neoliberal Era: Explaining Urban Unrest in Latin America

Thesis (Ph.D.)--University of Washington, 2016-08

Collection-Level Subject Access in Aggregations of Digital Collections: Metadata Application and Use

Problems in subject access to information organization systems have been under investigation for a long time. Focusing on item-level information discovery and access, researchers have identified a range of subject access problems, including quality and application of metadata, as well as the complexity of user knowledge required for successful subject exploration. While aggregations of digital collections built in the United States and abroad generate collection-level metadata of various levels of granularity and richness, no research has yet focused on the role of collection-level metadata in user interaction with these aggregations. This dissertation research sought to bridge this gap by answering the question “How does collection-level metadata mediate scholarly subject access to aggregated digital collections?” This goal was achieved using three research methods: • in-depth comparative content analysis of collection-level metadata in three large-scale aggregations of cultural heritage digital collections: Opening History, American Memory, and The European Library • transaction log analysis of user interactions, with Opening History, and • interview and observation data on academic historians interacting with two aggregations: Opening History and American Memory. It was found that subject-based resource discovery is significantly influenced by collection-level metadata richness. The richness includes such components as: 1) describing collection’s subject matter with mutually-complementary values in different metadata fields, and 2) a variety of collection properties/characteristics encoded in the free-text Description field, including types and genres of objects in a digital collection, as well as topical, geographic and temporal coverage are the most consistently represented collection characteristics in free-text Description fields. Analysis of user interactions with aggregations of digital collections yields a number of interesting findings. Item-level user interactions were found to occur more often than collection-level interactions. Collection browse is initiated more often than search, while subject browse (topical and geographic) is used most often. Majority of collection search queries fall within FRBR Group 3 categories: object, concept, and place. Significantly more object, concept, and corporate body searches and less individual person, event and class of persons searches were observed in collection searches than in item searches. While collection search is most often satisfied by Description and/or Subjects collection metadata fields, it would not retrieve a significant proportion of collection records without controlled-vocabulary subject metadata (Temporal Coverage, Geographic Coverage, Subjects, and Objects), and free-text metadata (the Description field). Observation data shows that collection metadata records in Opening History and American Memory aggregations are often viewed. Transaction log data show a high level of engagement with collection metadata records in Opening History, with the total page views for collections more than 4 times greater than item page views. Scholars observed viewing collection records valued descriptive information on provenance, collection size, types of objects, subjects, geographic coverage, and temporal coverage information. They also considered the structured display of collection metadata in Opening History more useful than the alternative approach taken by other aggregations, such as American Memory, which displays only the free-text Description field to the end-user. The results extend the understanding of the value of collection-level subject metadata, particularly free-text metadata, for the scholarly users of aggregations of digital collections. The analysis of the collection metadata created by three large-scale aggregations provides a better understanding of collection-level metadata application patterns and suggests best practices. This dissertation is also the first empirical research contribution to test the FRBR model as a conceptual and analytic framework for studying collection-level subject access.

Las garantías constitucionales y la acción extraordinaria de protección en la constitución de la República del Ecuador

Desde la vigencia de la Constitución del 2008, nuestro país evidencia una serie de cambios significativos, relacionados principalmente con las garantías constitucionales. En la presente monografía se ha realizado un estudio detallado de cada uno de estos mecanismos constitucionales, que garantizan una protección eficiente de los derechos reconocidos en el ordenamiento jurídico interno y en los instrumentos internacionales a favor de las personas. La presente investigación se divide en dos importantes secciones, que son las siguientes: Inicialmente, se presentan los avances en tema de garantías constitucionales establecidas en la Constitución de 2008, en relación a las garantías reguladas en el cuerpo político de 1998; se desarrolla además, un análisis de cada uno de estos mecanismos constitucionales, garantías normativas, institucionales, de políticas públicas, y jurisdiccionales, efectuando una referencia de las instituciones que abarca cada una de ellas.

Lactobacillus rossiae, a vitamin B12 producer, represents a metabolically versatile species within the genus Lactobacillus

Lactobacillus rossiae is an obligately hetero-fermentative lactic acid bacterium, which can be isolated from a broad range of environments including sourdoughs, vegetables, fermented meat and flour, as well as the gastrointestinal tract of both humans and animals. In order to unravel distinctive genomic features of this particular species and investigate the phylogenetic positioning within the genus Lactobacillus, comparative genomics and phylogenomic approaches, followed by functional analyses were performed on L. rossiae DSM 15814(T), showing how this type strain not only occupies an independent phylogenetic branch, but also possesses genomic features underscoring its biotechnological potential. This strain in fact represents one of a small number of bacteria known to encode a complete de novo biosynthetic pathway of vitamin B-12 (in addition to other B vitamins such as folate and riboflavin). In addition, it possesses the capacity to utilize an extensive set of carbon sources, a characteristic that may contribute to environmental adaptation, perhaps enabling the strain's ability to populate different niches.

The impact and control of malignant catarrhal fever in Tanzania

Malignant Catarrhal Fever (MCF), an often-lethal infectious disease, presents as a variable complex of lesions in susceptible ungulate species. The disease is caused by a -herpesvirus following transmission from an inapparent carrier host. Two major epidemiological forms exist: wildebeest-associated MCF (WA-MCF), in which the virus is transmitted to susceptible species by wildebeest calves less than approximately four months of age, and sheepassociated MCF (SA-MCF) in which the virus is spread by sheep (primarily adolescents). Due to the lack of an in-vitro propagation system for the causative agent of the more economically significant SA-MCF, and with the expectation that cross-protective immunity may be provided, vaccine development has focused on the more easily propagated alcelaphine herpesvirus-1 (AlHV-1) that causes WA-MCF. In 2008 a direct viral challenge trial showed that a novel vaccine, employing an attenuated AlHV-1 (atAlHV-1) `C5000 virus strain, protected British Friesian-Holstein (FH) cattle against an intranasal challenge with virulent AlHV-1 `C5000 virus. For cattle keeping people living near wildebeest calving areas in sub-Saharan Africa an effective vaccine would have value as it would release them from the costly annual disease avoidance strategy of having to move their herds away from the oncoming wildebeest. On the other hand, an effective vaccine will release herd owners from the need to avoid MCF, allowing them to graze their cattle alongside wildebeest on the highly nutritious pastures of the calving areas. As such conservationists have raised concerns that the development of a vaccine might lead to detrimental grazing competition. The principle objective of this study was to test the novel vaccine on Tanzanian shorthorn zebu cross cattle (SZC).We did this firstly using a natural challenge field trial (Chapter Two) which demonstrated that immunisation with the atAlHV-1 vaccine was well tolerated and induced an oro-nasopharyngeal AlHV-1-specific and -neutralising antibody response. This resulted in an immunity in SZC cattle that was partially protective and reduced naturally transmitted infection by 56%. We also demonstrated that non-fatal infections occurred with a much higher frequency than previously thought. Because the calculated efficacy of the vaccine was less than that seen in British FH cattle we wanted to determine whether host factors, particular to SZC cattle, had impacted the outcomes of the field trial. To do this we repeated the 2008 direct viral challenge trial using SZC cattle (Chapter Four). During this trial we also investigated whether the recombinant bacterial flagellin monomer (FliC), when used as an adjuvant, might improve the vaccine’s efficacy. The findings from this trial indicated that direct challenge with pathogenic AlHV-1 is effective at inducing MCF in SZC cattle and that FliC is not an appropriate adjuvant for this vaccine. Furthermore, with less control group cattle dying of MCF than expected we speculate that SZC cattle may have a degree of resistance to MCF that affords them protection from infection and developing fatal disease. In Chapter Three we investigated aspects of the epidemiology of MCF, specifically whether wildebeest placenta, long implicated by Maasai cattle owners as a source of MCF, might play a role in viral transmission. Additionally, through comparative sequence analysis, at two specific genes (A9.5 and ORF50) of wild-type and atAlHV-1, we investigated whether the `C5000 strain, the source of which was taken from Africa more than 40 years ago, was appropriate for vaccine development. The detection of AlHV-1 virus in approximately 50% of placentae indicated that infection can occur in-utero and that this tissue might play a role in disease transmission. And, despite describing three new alleles of the A9.5 gene (supporting previous evidence that this gene is polymorphic and encodes a secretory protein with interleukin-4 as the major homologue), the observation that the most frequently detected haplotypes, in both wild-type and attenuated AlHV-1, were identical suggests that AlHV-1 has a slow molecular clock and that the attenuated strain was appropriate for vaccine development. In Chapter Five we present the first quantitative assessment of the annual MCF avoidance costs that Maasai pastoralists incur. In particular we estimated that as a result of MCF avoidance 64% of the total daily milk yield during the MCF season was not available to be used by the 81% of the family unit remaining at the permanent boma. This represents an upper-bound loss of approximately 8% of a household0s annual income. Despite these considerable losses we concluded that, given an incidence of fatal MCF in cattle living in wildebeest calving areas of 5% to 10%, if herd owners were to stop trying to avoid MCF by allowing their cattle to graze alongside wildebeest, any gains made through increased availability of milk, improved body condition and reduced energy demands would be offset by an increase in MCF-incidence. With the development of an effective vaccine, however, this alternative strategy might become optimal. The overall conclusion we draw therefore is that, despite the substantial costs incurred each year avoiding MCF, the partial protection afforded by the novel vaccine strategy is not sufficient to warrant a wholesale change in disease avoidance strategy. Nonetheless, even the partial protection provided by this vaccine could be of value to protect animals that cannot be moved, for example where some of the herd remain at the boma to provide milk or where land-use changes make traditional disease avoidance difficult. Furthermore, the vaccine may offer a feasible solution to some of the current land-use challenges and conflicts, providing a degree of protection to valuable livestock where avoidance strategies are not possible, but with less risk of precipitating the potentially damaging environmental consequences, such as overgrazing of highly nutritious seasonal pastures, that might result if herd owners decide they no longer need to avoid wildebeest.

El efecto de la definición regulatoria de banda ancha sobre la difusión y la competencia del mercado de servicios de Internet fijo en Colombia

A partir de la dinámica evolutiva de la economía de las Tecnologías de la Información y las Comunicaciones y el establecimiento de estándares mínimos de velocidad en distintos contextos regulatorios a nivel mundial, en particular en Colombia, en el presente artículo se presentan diversas aproximaciones empíricas para evaluar los efectos reales que conlleva el establecimiento de definiciones de servicios de banda ancha en el mercado de Internet fijo. Con base en los datos disponibles para Colombia sobre los planes de servicios de Internet fijo ofrecidos durante el periodo 2006-2012, se estima para los segmentos residencial y corporativo el proceso de difusión logístico modificado y el modelo de interacción estratégica para identificar los impactos generados sobre la masificación del servicio a nivel municipal y sobre las decisiones estratégicas que adoptan los operadores, respectivamente. Respecto a los resultados, se encuentra, por una parte, que las dos medidas regulatorias establecidas en Colombia en 2008 y 2010 presentan efectos significativos y positivos sobre el desplazamiento y el crecimiento de los procesos de difusión a nivel municipal. Por otra parte, se observa sustituibilidad estratégica en las decisiones de oferta de velocidad de descarga por parte de los operadores corporativos mientras que, a partir del análisis de distanciamiento de la velocidad ofrecida respecto al estándar mínimo de banda ancha, se demuestra que los proveedores de servicios residenciales tienden a agrupar sus decisiones de velocidad alrededor de los niveles establecidos por regulación.

Estudio sobre la viabilidad de la implementación del jurado de conciencia en el ordenamiento colombiano

El objeto del presente trabajo final de grado es analizar la viabilidad de la implementación de la figura del jurado de conciencia en el sistema penal colombiano, que fue suprimida mediante el Decreto 1861 de 1989. A su vez, hacer un análisis de derecho comparado con el fin de determinar los aspectos positivos y negativos de la implementación de los jurados en otros sistemas jurídicos. El resultado del análisis propuesto pretende determinar si es procedente la implementación de los jurados de conciencia en Colombia.