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Interpreting metaphors: a pragmatic-argumentative model of linguistic meaning
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A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases
Publication . Falcão, Marta; Allocca, Mariateresa; Rodrigues, Ana Sofia; Granjo, Pedro; Francisco, Rita; Pascoal, Carlota; Rossi, Maria Grazia; Marques-da-Silva, Dorinda; Magrinho, Salvador C. M.; Jaeken, Jaak; Castro, Larisa Aragon; de Freitas, Cláudia; Videira, Paula A.; de Andrés-Aguayo, Luísa; dos Reis Ferreira, Vanessa; Instituto de Higiene e Medicina Tropical (IHMT); DCV - Departamento de Ciências da Vida; UCIBIO - Applied Molecular Biosciences Unit; Instituto de Filosofia da NOVA (IFILNOVA); LAQV@REQUIMTE; DQ - Departamento de Química; Molecular Diversity Preservation International (MDPI)
At least 50% of chronic disease patients don’t follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages.
Effectiveness of patients’ involvement in a medical and nursing pain education programme
Publication . Serafini, Alice; Rossi, Maria Grazia; Alberti, Sara; Borellini, Erika; Contini, Annamaria; Cernesi, Simone; D'Amico, Roberto; Dìaz Crescitelli, Matías Eduardo; Ferri, Paola; Fornaciari, Davide; Ghirotto, Luca; Giugni, Linda; Lui, Fausta; Rossi, Francesca; Cuoghi Costantini, Riccardo; Santori, Valentino; Padula, Maria Stella; Instituto de Filosofia da NOVA (IFILNOVA); BMJ Publishing Group
Introduction Pain is a multidimensional experience that varies among individuals and has a significant impact on their health. A biopsychosocial approach is recommended for effective pain management; however, health professionals’ education is weak on this issue. Patient involvement is a promising didactic methodology in developing a more holistic perspective, however there is a lack of reliable evidence on this topic. The aim of the present study is to evaluate the effectiveness of patient involvement in pain education in undergraduate medicine and nursing students. Methods and analysis An open-label randomised controlled trial including qualitative data will be conducted. After an introductory lesson, each student will be randomly assigned to the intervention group, which includes an educational session conducted by a patient–partner along with an educator, or to the control group in which the session is exclusively conducted by an educator. Both sessions will be carried out according to the Case-Based Learning approach. Primary outcomes will be students’ knowledge, attitudes, opinions and beliefs about pain management, whereas the secondary outcome will be students’ satisfaction. The Pain Knowledge and Attitudes (PAK) and Chronic Pain Myth Scale (CPMS) will be administered preintervention and postintervention to measure primary outcomes. Students’ satisfaction will be measured by a questionnaire at the end of the session. Two focus groups will be conducted to evaluate non-quantifiable aspects of learning. Ethics and dissemination The protocol of this study was approved by the independent Area Vasta Emilia Nord ethics committee. Adherence to The Declaration of Helsinki and Good Clinical Practice will ensure that the rights, safety and well-being of the participants in the study are safeguarded, as well as data reliability. The results will be disseminated through scientific publications and used to improve the educational offer. A version of the anonymised data set will be released for public access. Trial registration Trial was not registered on ClinicalTrials.gov as the interventions being compared only concern educational programmes and the outcomes considered do not refer to any clinical dimension. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Fundação para a Ciência e a Tecnologia
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OE
Número da atribuição
SFRH/BPD/115073/2016