The supportive care needs of parents caring for a child with a rare disease : a scoping review

Background: Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review. Objective: The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition. Methods: We conducted a scoping study review comprising 29 studies (1990–2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF. Results: Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support. Conclusion: A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework

The supportive care needs of parents with a child with a rare disease : results of an online survey

Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. Methods: An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received. Results: Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals’ level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223). Conclusion: This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care

A TENDÊNCIA À ASSEMELHAÇÃO ENTRE MODELOS DE RELIGIOSIDADE: PADRONIZAÇÃO DOS BENS RELIGIOSOS DA IGREJA CATÓLICA COM OS DAS IGREJAS NEOPENTECOSTAIS

RESUMO: O presente estudo coloca sob exame os pressupostos analíticos de Berger (1985) e Guerra (2000; 2003), os quais apontam para a transformação das mensagens e propostas religiosas em produtos para consumo como qualquer outro no mercado, no qual as instituições religiosas competem utilizando como estratégia mais comum a assemelhação com os bens religiosos que apresentam alta performance entre os consumidores. Comparando sites de uma amostra de Paróquias da Diocese de Campina Grande - PB com os sites de uma amostra de igrejas neopentecostais da mesma cidade, constatou-se um conjunto de produtos religiosos semelhantes oferecidos, principalmente para o segmento dos jovens, destacando a assemelhação entre modelos de práticas de oração, de louvor, de testemunhos oferecidos nos sites das instituições católicas com aqueles oferecidos nos das neopentecostais, o que substitui o antigo modelo da diferenciação/oposição entre católicos e evangélicos em geral pelo Paradigma da Semelhança, bem como entre os sites de ambos os grupos com a esfera secular no que se referem aos eventos religiosos de maior porte, tais como shows, retiros e encontros temáticos. Palavras-chave: Igreja Católica; Mercado Religioso; Paradigma da Semelhança. ABSTRACT: This study puts under scrutiny the analytical assumptions of Berger (1985) and Guerra (2000, 2003), which indicate a transformation of religious messages and proposals in consumer products like any other in the economic market in which religious institutions compete using the common strategy of resemblance with religious goods that have high performance among consumers. Comparing sites of a sample of Parishes of the Campina Grande - Paraiba’s Diocese  with the websites of a sample of neo-Pentecostal churches in the same town, we found that a set of similar religious products have been offered, especially those for the youth segment, highlighting the resemblance between practice models of prayer, praise, testimony offered on the websites of Catholic institutions with those offered in the neo-Pentecostal ones, which replaces the old model of differentiation/opposition between Catholics and evangelicals in general by the new one of the Resemblance Paradigm, as well as between sites of both institutions and those of secular groups in relation to the larger religious events, such as concerts, thematic meetings and retreats. Keywords: Catholic Church; Religious Market; Resemblance Paradigm. RESUMEN: El presente estudio pone bajo la lupa los supuestos de análisis de Berger (1985) y Guerra (2000, 2003), lo que indica una transformación de mensajes religiosos y propuestas en productos de consumo como cualquier otro mercado en el que las instituciones religiosas utilizar la raza como el parecido estrategia más común con los bienes religiosos que tienen un alto rendimiento entre los consumidores. Comparando los sitios de una muestra de Parroquias de la Diócesis Campina Grande con las páginas web de una muestra de las iglesias neo- pentecostales en la misma ciudad, encontramos un conjunto de productos religiosos ofrecidos similares, especialmente para el segmento de los jóvenes, destacando la similitud entre los modelos de práctica de la oración, la alabanza , el testimonio ofrecido en los sitios web de las instituciones católicas con los ofrecidos en el neo-pentecostal, que sustituye al antiguo modelo de diferenciación / oposición entre católicos y evangélicos en general por Paradigm similitud, así como entre los sitios de ambos grupos con la esfera secular en la que se relacionan con los eventos religiosos más grandes, tales como conciertos , reuniones temáticas y retiros. Palabras clave: Iglesia católica; Mercado religioso; Similitud Paradigm

Visão baseada em recursos versus imagem do destino: um estudo de estratégia a partir dos imóveis adquiridos por noruegueses no Rio Grande do Norte

O trabalho teve o objetivo de identificar o perfil dos turistas, provenientes da Noruega, que compraram condomínios de segunda residência no mercado local de imóveis, estabelecer quais as motivações para a mobilidade residencial que os influenciaram a realizar a compra desse tipo de empreendimento, e também procurou caracterizar qual é a associação desse comportamento com os atributos da imagem do destino do Rio Grande do Norte à luz da teoria da VBR. Analisando os fatores motivacionais que determinam a compra, é necessário destacar que a melhora na qualidade de vida e mudanças na renda relacionadas à profissão são um elemento crucial para os consumidores. A aquisição de um novo imóvel no destino turístico do Rio Grande do Norte não é apenas um bom investimento, significa para muitos dos proprietários a satisfação de suas ambições como indivíduos. No contexto da imagem do destino, o indicador recursos naturais (sol e mar) foi o único quesito de associação relacionado à mobilidade. Assim sendo, pode-se concluir que em termos de fatores internos relativos à heterogeneidade e à imobilidade de recursos, o recurso sol e mar seria o interesse principal dos turistas. Logo, o turismo local, para se manter com uma vantagem competitiva sustentável, deve fortalecer outros recursos, pois o recurso sol e mar está disponível em toda a costa nordestina

Lost Stories: Women of Color at Iowa State University

Name a woman of color who graduated and led change at Iowa State. What did they do? How did they impact an Iowa State that promoted the mission to create, share, and apply knowledge to make Iowa and the world a better place? In 1931, the first African American Woman graduated Iowa State University with a Masters degree in Home Economics Education. However, her story and the stories of so many other women of color have been forgotten. Iowa State University, as an institution has celebrated both women, and people of color, but have rarely publicly celebrated the accomplishments of women of color. This session will not only detail the accomplishments of women of color at Iowa State to identify and celebrate their achievements, but will also encourage Iowa State University to recognize their achievements

Lost Stories: Women of Color at Iowa State University

Name a woman of color who graduated and led change at Iowa State. What did they do? How did they impact an Iowa State that promoted the mission to create, share, and apply knowledge to make Iowa and the world a better place? In 1931, the first African American Woman graduated Iowa State University with a Masters degree in Home Economics Education. However, her story and the stories of so many other women of color have been forgotten. Iowa State University, as an institution has celebrated both women, and people of color, but have rarely publicly celebrated the accomplishments of women of color. This session will not only detail the accomplishments of women of color at Iowa State to identify and celebrate their achievements, but will also encourage Iowa State University to recognize their achievements.</p

Influência dos intermediários de distribuição de produtos turísticos no processo de decisão do meio de hospedagem pelo consumidor

 This article discusses the complex process of consumer decision in hosting services related to the tourism distribution channels. The research is aimed at describing the level of influence of the distribution intermediaries of tourism products on the choice of means of accommodation by the consumer. The data was collected through application of questionnaires to three hundred Brazilian tourists, staying in nineteen hotels in Natal, Rio Grande do Norte, Brazil. The results characterized the profile of consumers of hosting services and identified the distribution channels used by them. It was also found the influence of intermediaries on consumers when choosing means of accommodation, trying to identify causal relationship between this influence and the consumer characteristics. It was observed that the information about lodging facilities available on the Internet reduce the likelihood that this influence is exercised; however, consumers consider this information supplementary, and not a substitute to the one provided by intermediaries.O presente artigo trata do complexo processo de decisão do consumidor de serviços de hospedagem frente aos canais de distribuição do turismo. A pesquisa objetiva é descrever o nível de influência dos intermediários de distribuição de produtos turísticos exercida sobre a escolha do meio de hospedagem pelo consumidor. A coleta ocorreu através da aplicação de trezentos questionários a turistas brasileiros, hospedados em dezenove hotéis de Natal, Rio Grande do Norte, Brasil. Os resultados caracterizaram o perfil dos consumidores de serviços de hospedagem, além de identificar os canais de distribuição por eles utilizados. Verificou-se ainda a influência dos intermediários sobre os consumidores na escolha do meio de hospedagem, buscando identificar relações causais entre esta influência e as características do consumidor. Constatou-se que as informações sobre os meios de hospedagem disponíveis na internet reduzem a probabilidade de que esta influência seja exercida, entretanto os consumidores consideram estas informações complementares e não substitutas àquelas fornecidas pelos intermediários

Exploring the Diversity and Distribution of Neotropical Avian Malaria Parasites – A Molecular Survey from Southeast Brazil

<div><p>Southeast Brazil is a neotropical region composed of a mosaic of different tropical habitats and mountain chains, which allowed for the formation of bird-rich communities with distinct ecological niches. Although this region has the potential to harbor a remarkable variety of avian parasites, there is a lack of information about the diversity of malarial parasites. We used molecular approaches to characterize the lineage diversity of <i>Plasmodium</i> and <i>Haemoproteus</i> in bird communities from three different habitats in southeast Brazil based on the prevalence, richness and composition of lineages. We observed an overall prevalence of 35.3%, with a local prevalence ranging from 17.2% to 54.8%. Moreover, no significant association between prevalence and habitat type could be verified (p>0.05). We identified 89 <i>Plasmodium</i> and 22 <i>Haemoproteus</i> lineages, with 86% of them described for the first time here, including an unusual infection of a non-columbiform host by a <i>Haemoproteus</i> (<i>Haemoproteus</i>) parasite. The composition analyses of the parasite communities showed that the lineage composition from Brazilian savannah and tropical dry forest was similar, but it was different from the lineage composition of Atlantic rainforest, reflecting the greater likeness of the former habitats with respect to seasonality and forest density. No significant effects of habitat type on lineage richness were observed based on GLM analyses. We also found that sites whose samples had a greater diversity of bird species showed a greater diversity of parasite lineages, providing evidence that areas with high bird richness also have high parasite richness. Our findings point to the importance of the neotropical region (southeast Brazil) as a major reservoir of new haemosporidian lineages.</p> </div