Adolescent and young adult patients as co-researchers: A scoping review.

BACKGROUND: As part of a research project aimed at evaluating a hospital-based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co-researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co-researchers. METHODS: We conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED. RESULTS: We found reports of young patients being actively engaged as co-researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co-researchers is resource demanding and time-consuming. Involving young patients as co-researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co-researcher include empowerment, skills building and raised self-esteem. Few authors go into detail about ethical considerations when involving young co-researchers. None of the included articles discuss legal considerations. DISCUSSION AND CONCLUSION: No lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co-researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co-researchers. More reflection is needed about what meaningful participation is and what it entails in this context. PATIENT OR PUBLIC CONTRIBUTION: This review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.

Thirtieth anniversary of the UN Convention on the Rights of the Child: advancing a child rights-based approach to child health and well-being.

Global challenges to children's health are rooted in social and environmental determinants. The UN Convention on the Rights of the Child (CRC) articulates the rights required to address these civil-political, social, economic and cultural determinants of child well-being. The principles of child rights-universality, interdependence and accountability-define the tenets of social justice and health equity required to ensure all rights accrue to all children, and the accountability of individuals and organisations (duty-bearers) to ensure these rights are fulfilled. Together, the CRC and child rights principles establish the structure and function of a child rights-based approach (CRBA) to child health and well-being-that provides the strategies and tools to transform child health practice into a rights, justice and equity-based paradigm. The 30th anniversary of the CRC is an opportune time to translate a CRBA to health and well-being into a global practice of paediatrics and child health.

[Informed Consent - Vision and Perspectives of Adolescents, Parents and Professionals: Multicentric Study in Six Hospitals].

INTRODUCTION: According to the Convention on the Rights of Children and the national standards of the Portuguese Directorate-General for Health, adolescents have the right to make decisions about their own health. The aim of this study was to identify the dynamics of the implementation of assent and informed consent in hospital settings. MATERIAL AND METHODS: Cross-sectional and multicentre study based on surveys, which included adolescents from 14 to 18 years and their parents. Heads of departments of Pediatrics and attending physicians were also interviewed. RESULTS: 194 responses from adolescents and parents were collected, and 46 interviews were conducted with physicians and heads of department. Adolescents and parents consider participation in decision making important, but parents value their own participation significantly higher (91.7% vs 47.8%, p < 0.001 in the 14 - 15 year group, 91.8% vs 53, (89.6% vs 69.6%, p = 0.016 in the 14 - 15 year group, 91.8% vs 69.4%, p = 0.005 in the 16 - 17 years group). Information leaflets are difficult to understand by teenagers. The eight heads of department felt that doctors have awareness towards communication with teenagers but have little time available. Of the 38 attending physicians, 36 said they had learned from their older colleagues and confirmed gaps in postgraduate training. DISCUSSION: This pioneering study in Portugal enabled the identification of areas that can be optimized, through health education programs for parents and adolescents, written information that is adequate to the different age groups, training in undergraduate education for medical students and also education in health institutions for professionals. CONCLUSION: Adolescents and parents, are unaware of legal and ethical standards for consent and assent. The implementation of the adolescents' right to informed assent / informed consent was not observed. Our proposal is to implement local programs for adolescents and parents.

Introdução: A Convenção sobre os Direitos das Crianças e normas nacionais da Direção Geral da Saúde conferem aos adolescentes o direito às decisões sobre a sua saúde. O objectivo deste estudo foi identificar as dinâmicas de implementação do assentimento e do consentimento informado, em ambiente hospitalar. Material e Métodos: Estudo transversal e multicêntrico realizado a partir de inquéritos. Incluídos adolescentes dos 14 aos 18 anos e pais respectivos. Foram ainda entrevistados os diretores de serviço e assistentes hospitalares. Resultados: Obtiveram-se 194 respostas de adolescentes e pais e efetuaram-se 46 entrevistas a médicos e diretores dos serviços. Adolescentes e pais consideram importante a participação no processo de decisão mas os pais valorizam de forma significativamente superior a sua participação (91,7% vs 47,8%, p < 0,001 no grupo 14 - 15 anos; 91,8% vs 53,1%, p = 0,001, no grupo 16 - 17 anos), bem como a do médico (89,6% vs 69,6%, p = 0,016 no grupo 14 - 15 anos; 91,8% vs 69,4%, p = 0,005 no grupo 16 - 17 anos). Os folhetos informativos são pouco perceptíveis pelos adolescentes. Os oito diretores consideraram que os médicos estão sensibilizados para comunicar com os adolescentes mas têm pouco tempo disponível. Dos 38 assistentes, 36 afirma ter aprendido com os colegas mais velhos e confirmam lacunas na formação pós graduada. Discussão: Este estudo pioneiro em Portugal permitiu a identificação de áreas passíveis de otimização, através de programas da educação para a saúde para pais e adolescentes, informação escrita adequada à idade e formação no ensino pré graduado para estudantes de Medicina e educação nas instituições de saúde para os profissionais. Conclusão: Os adolescentes e pais desconhecem as normas legais e éticas quanto ao consentimento e assentimento. Não fica demonstrada a implementação do direito dos adolescentes ao assentimento informado / consentimento informado. Propõem-se programas locais de sensibilização para adolescentes e pais.

Riverine fishers' knowledge of extreme climatic events in the Brazilian Amazonia.

BACKGROUND: Climate change is altering climate patterns, mainly increasing the frequency and intensity of extreme events with potentially serious impacts on natural resources and the people that use them. Adapting to such impacts will require the integration of scientific and local (folk) knowledge, especially the first-hand experiences and perceptions of resource users such as fishers. In this study, we identify how commercial riverine fishers in the Amazon remember extreme climatic events (flood and drought) and how they face the consequences of extreme events on fish availability. METHODS: Data were collected from the main Manaus fishery harbor between June and October of 2013. Semi-structured questionnaires and a historical timeline technique were used to gather data from artisanal commercial fishers. Fishers' knowledge of extreme climate events was assessed by their "cultural consensus" for identification of event years and perceived impacts. Fishers' responses were also compared to hydrological data to test their similarity. RESULTS: There was a high level of cultural consensus among fishers about extreme events years. They were able to identify four consecutive unusual droughts, between 2009 and 2012. Elevated levels of fish mortality and decreases in the fishery were perceived as consequences of the drought events, as well as, a reduction in fish size, and disappearance of some species. Extreme flood events were associated with greater difficulties accessing fishing grounds. CONCLUSIONS: Extreme climatic events (floods and droughts) were remembered, and the recent increase in their intensity and frequency was also perceived. Moreover, extreme climate event (mainly droughts) impacts on fishery resources were also observed. Such information is potentially valuable for educational programs to further improve adaptation of local Amazonian fishing communities to future climate change, e.g. increasing local ecological knowledge using learning material based on their perception.

Diet of two syntopic species of Crenuchidae (Ostariophysi: Characiformes) in an Amazonian rocky stream / Dieta de duas espécies sintópicas de Crenuchidae (Ostariophysi: Characiformes) em um riacho rochoso amazônico

Abstract This study assessed the diet of two poorly known syntopic fish species of the family Crenuchidae, Characidium aff. declivirostre and Leptocharacidium omospilus, in a Presidente Figueiredo´ rocky stream, Amazonas, Brazil. The stomach contents were analyzed and their Frequency of Occurrence (FO %) and Relative Volume (Vol %) were combined in a Feeding Index (IAi). We examined 20 individuals of C. aff. declivirostre and 23 of L. omospilus. The Morisita-Horn Index was used to estimate the overlap between the diets of these species. Immature insects were the most valuable items consumed by both fish species. The diet of C. aff. declivirostre was mainly composed of larvae and pupae of Chironomidae, while L. omospilus predominantly consumed larvae of Hydroptilidae, Hydropyschidae and Pyralidae. Thus, both species were classified as autochthonous insectivorous. Characidium aff. declivirostre was considered a more specialized species, probably reflecting lower feeding plasticity or the use of more restricted microhabitats compared to L. omospilus. When the food items were analyzed at the family taxonomic level, the diet overlap between these species was considered moderate (Morisita-Horn Index = 0.4). However, a more thorough analysis, at the genus level, indicates a very low diet overlap. Therefore, we conclude that the feeding segregation between C. aff. declivirostre and L. omospilus may favor their co-existence, despite their high phylogenetic closeness.

Resumo O presente estudo investigou a dieta de duas espécies de peixes pouco conhecidas da família Crenuchidae, Characidium aff. declivirostre e Leptocharacidium omospilus, sintópicas de um riacho de corredeira do município de Presidente Figueiredo, Estado do Amazonas, Brasil. O conteúdo estomacal de cada exemplar foi analisado pelos métodos de Frequência de Ocorrência (FO%) e Volume Relativo (Vol%) e, posteriormente, combinados para o cálculo do Índice Alimentar (IAi). Foram analisados 20 indivíduos de C. aff. declivirostre e 23 de L. omospilus. A sobreposição entre a dieta das duas espécies foi estimada pelo Índice Simplificado de Morisita-Horn. Insetos imaturos foram os principais itens consumidos por ambas as espécies. A dieta de C. aff. declivirostre mostrou preferência acentuada por larvas e pupas de Chironomidae, enquanto que a dieta de L. omospilus concentrou-se em larvas de Hydroptilidae, de Hydropyschidae e de Pyralidae. Portanto, as espécies foram classificadas troficamente como insetívoras consumidoras de itens autóctones. A dieta de C. aff. declivirostre foi mais especializada, o que pode ser reflexo de uma menor plasticidade alimentar ou do uso de microhabitats mais restritos, quando comparado a L. omospilus. Ao analisar os itens alimentares em nível taxonômico de família, a sobreposição alimentar foi considerada moderada (Índice de Morisita-Horn = 0,4). Entretanto, análises mais refinadas, em nível de gênero, indicaram sobreposição muito baixa na dieta. Conclui-se que tal segregação alimentar pode favorecer a coexistência de C. aff. declivirostre e L. omospilus, mesmo que sejam espécies filogeneticamente próximas.