La participación ciudadana en la investigación desde la perspectivade investigadores de atención primaria

Objetivo: Explorar las debilidades, amenazas, fortalezas y oportunidades (DAFO) para el desarrollo de la participación de la ciudadanía en los proyectos de investigación gestionados por el Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAPJGol) según los investigadores de atención primaria de salud de Catalu ̃na.Método: Estudio transversal realizado en 2017 con 36 equipos de investigación de atención primaria de salud acreditados por el IDIAPJGol y su personal de gestión. Se dise ̃nó y pilotó un cuestionario abierto(papel y online) para desarrollar una técnica DAFO. Se obtuvieron 65 respuestas (14 en papel y 51 online).Se realizó un análisis de contenido temático.Resultados: La mayoría de informantes considera la participación de la ciudadanía en la investigació nuna estrategia útil, innovadora, viable e imprescindible, pero exige un cambio de mentalidad y un alejamiento del paradigma jerárquico. Puede ser difícil su ejecución y complicar los estudios. Les preocupa a qué ciudadanos implicar, cómo seleccionarlos, los posibles conflictos de intereses y las necesidades deformación. Las principales propuestas para su implementación son difundir estrategias previas, fomentar la motivación y las sinergias entre ciudadanos, investigadores e instituciones, y clarificar los roles delos actores implicados. El IDIAPJGol debería elaborar recomendaciones para la participación de la ciudadanía en la investigación, incentivar su inclusión, disponer de un referente y asesorar a los equipos investigadores. Conclusiones: A pesar de los retos, desarrollar la participación de la ciudadanía en la investigación en atención primaria de salud es imprescindible y factible, pero partiendo de una estrategia participativa con todos los actores. La ciudadanía puede participar en cualquier dise ̃no y fase de la investigación adaptando cada proyecto, siendo la atención primaria un ámbito privilegiado para desarrollar la participación ciudadana en la investigación.Objective: Explore the strengths, weaknesses, opportunities and threats (SWOT) for development of public involvement in research by Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAPJGol) according to primary health care researchers in Catalonia (Spain). Methods: Cross-sectional study carried out in 2017 with 36 primary health care research teams accredited by IDIAPJGol and its management staff. An open questionnaire (paper and online) was designed and piloted to develop a SWOT technique, and 65 answers were obtained (14 in paper and 51 online). A thematic content analysis was carried out. Results: Most informants consider public involvement in research a useful, innovative, viable and essential strategy, but it requires a change of mentality and a move away from the hierarchical paradigm. It can be difficult to execute and can complicate studies. They are concerned about which citizens should be involve, how to select them, possible conflicts of interest and training needs. The main proposals for its implementation are to disseminate previous strategies, encourage motivation and synergies among citizens, researchers and institutions, and to clarify the roles of the actors involved. IDIAPJGol should develop recommendations for the public involvement in research, encourage their inclusion, have a mentor and advise the research teams. Conclusions: Despite the challenges, developing public involvement in research in primary health care is essential and feasible, what it is more should be based on a participatory strategy with all actors. The citizens can participate in any kind of design and phase of the research, adapting each project, being the primary health care a privileged area to develop the public involvement in research

What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

BACKGROUND: There is a need for an in-depth approach to the meaning of the wish to hasten death (WTHD). This study aims to understand the experience of patients with serious or incurable illness who express such a wish. METHODS AND FINDINGS: Systematic review and meta-ethnography of qualitative studies from the patient's perspective. Studies were identified through six databases (ISI, PubMed, PsycINFO, CINAHL, CUIDEN and the Cochrane Register of Controlled Trials), together with citation searches and consultation with experts. Finally, seven studies reporting the experiences of 155 patients were included. The seven-stage Noblit and Hare approach was applied, using reciprocal translation and line-of-argument synthesis. Six main themes emerged giving meaning to the WTHD: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over one's life ('having an ace up one's sleeve just in case'). An explanatory model was developed which showed the WTHD to be a reactive phenomenon: a response to multidimensional suffering, rather than only one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of WTHD are total suffering, loss of self and fear, which together produce an overwhelming emotional distress that generates the WTHD as a way out, i.e. to cease living in this way and to put an end to suffering while maintaining some control over the situation. CONCLUSIONS: The expression of the WTHD in these patients is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten one's death. These meanings, which have a causal relationship to the phenomenon, should be taken into account when drawing up care plans

La evaluación cualitativa en la formación médica continuada Qualitative evaluation in continuing medical education

Los métodos semicualitativos y cualitativos permiten realizar una evaluación de los programas de formación médica continuada de una forma más profunda. Dichos métodos son de utilidad para responder a preguntas evaluativas del cómo y por qué de los fenómenos. Las técnicas de recogidas de datos más frecuentemente utilizadas son la observación, la entrevista, los grupos focales de discusión, el análisis de documentos y las encuestas. En la bibliografía se han publicado múltiples estudios en los que se ha utilizado una o varias de las técnicas enumeradas con el fin de evaluar el proceso, el impacto, las necesidades o las barreras de un programa de formación médica continuada.<br>Semi-qualitative and qualitative methods make it possible to carry out a more thorough evaluation of continuing medical education programmes. These methods are useful to answer evaluative questions about how and why phenomena take place. The most commonly used data collection techniques are observation, interviews, focus group discussions, document analysis and surveys. The literature offers many examples of studies in which one or several of the above-mentioned techniques have been used to evaluate the process, the impact, the needs or the hindrances of a continuing medical education programme

La evaluación cualitativa en la formación médica continuada

Los métodos semicualitativos y cualitativos permiten realizar una evaluación de los programas de formación médica continuada de una forma más profunda. Dichos métodos son de utilidad para responder a preguntas evaluativas del cómo y por qué de los fenómenos. Las técnicas de recogidas de datos más frecuentemente utilizadas son la observación, la entrevista, los grupos focales de discusión, el análisis de documentos y las encuestas. En la bibliografía se han publicado múltiples estudios en los que se ha utilizado una o varias de las técnicas enumeradas con el fin de evaluar el proceso, el impacto, las necesidades o las barreras de un programa de formación médica continuada

Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias

This study aims to incorporate patients' perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers. The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life. Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients' needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians' information needs and patients' expectations.Rare diseases Ataxia Patient participation Systematic review Research Treatment outcome Spain

A metasynthesis of qualitative studies regarding opinions and perceptions about barriers and determinants of health services’ accessibility in economic migrants

Background: Access to health services is an important health determinant. New research in health equity is required, especially amongst economic migrants from developing countries. Studies conducted on the use of health services by migrant populations highlight existing gaps in understanding which factors affect access to these services from a qualitative perspective. We aim to describe the views of the migrants regarding barriers and determinants of access to health services in the international literature (1997–2011). Methods: A systematic review was conducted for Qualitative research papers (English/Spanish) published in 13 electronic databases. A selection of articles that accomplished the inclusion criteria and a quality evaluation of the studies were carried out. The findings of the selected studies were synthesised by means of metasynthesis using different analysis categories according to Andersen’s conceptual framework of access and use of health services and by incorporating other emergent categories. Results: We located 3,025 titles, 36 studies achieved the inclusion criteria. After quality evaluation, 28 articles were definitively synthesised. 12 studies (46.2%) were carried out in the U.S and 11 studies (42.3%) dealt with primary care services. The participating population varied depending mainly on type of host country. Barriers were described, such as the lack of communication between health services providers and migrants, due to idiomatic difficulties and cultural differences. Other barriers were linked to the economic system, the health service characteristics and the legislation in each country. This situation has consequences for the lack of health control by migrants and their social vulnerability. Conclusions: Economic migrants faced individual and structural barriers to the health services in host countries, especially those with undocumented situation and those experimented idiomatic difficulties. Strategies to improve the structures of health systems and social policies are needed.Carolina Foundation (Spain), Mario Benedetti Foundation of the University of Alicante, Regional Ministry of Education (Generalitat Valenciana) (BEST/2009/003). Healthcare Research Fund of the Spanish Ministry of Health and Social Policy (PI 0790470)