Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Autor: Roberto Lala, Luca Ostacoli, Pier Maria Furlan, Claudio Carezana, Marco Zuffranieri, Federica Trivelli, Francesco Oliva, Rocco Luigi Picci

Publikováno v: Journal of Child and Family Studies. 24:514-522

Rare diseases are chronic and sometimes life-threatening conditions which differ from others due to less definite identity and more difficult clinical management. These peculiar features may hinder the parental adaptational process. The study aimed t

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ccb5d5a35e8e6f702eedd70dc33e8ba4
https://doi.org/10.1007/s10826-013-9864-5

List of Contributors

Autor: Ricardo Abadie-Guedes, Anissa Abi-Dargham, Osama A. Abulseoud, Jelena Acevska, Ana Adan, María A. Aguilar, Maryam Akhgari, Robert Ali, Amelia J. Anderson-Mooney, Muhammad Anees, M. Carmen Arenas, Jamie Arndt, Daniele Ascheri, Nida Ashraf, Maxie Ashton, Olga Asimaki, Jean-Michel Aubry, Harinder Aujla, A. George Awad, Mahmoud A. Awara, Ana Bagues, Yatan P.S. Balhara, Francis Bambico, Laura Barrio-Real, Selena E. Bartlett, Balapal S. Basavarajappa, Aniruddha Basu, Claiton H.D. Bau, Matthew C. Beattie, Benjamin Becker, Anton L. Beer, Deepak Behera, Irina Benaiges, Dessa Bergen-Cico, Susan E. Bergeson, Wade H. Berrettini, Leandro J. Bertoglio, Charles S. Bockman, Stefan Borgwardt, Josiane Bourque, Muge Bozkurt, Katharine Alexandra Brennan, Hilary Briggs, Samanth J. Brooks, Rachel Picada Bulcão, Ute Burkhardt, Tracy R. Butler, Eduardo Rodrigues Cabrera, Daniela Caldirola, Russell C. Callaghan, Elza Callegari, María J. Caloca, Alline C. Campos, Carla Cannizzaro, Gavin Cape, Benjamin L. Carnell, Javier R. Caso, Lucas Henrique Cendron, Yun-Hsuan Chang, Gordon L.F. Cheng, Kao Chin Chen, Kanwaljit Chopra, Tony C.H. Chow, Rachael Cico, Jason B. Cook, Maurizio Coppola, Jose A. Cortes-Briones, Janna Cousijn, Richard C. Crist, Candice E. Crocker, Kirsty Danielson, Miguel Dasilva, Malay Dave, Mariella De Biasi, Cristiane R. de Carvalho, François De Guio, Dirk De Ridder, Sonia Dhiman, Giuseppina Diaferia, Marco Diana, Joseph R. DiFranza, Aneta Dimitrovska, Le-Anh Dinh-Williams, Maja Djurendic-Brenesel, Jonathan N. Dodd, Neil C. Dodge, Paul D. Drew, Rene Drucker Colín, Irena Dujmovic, Marcelo Dutra Arbo, Scott Edwards, Afshar Etemadi-Aleagha, Cuneyt Evren, Juan Fang, Camino Fernández-Rodríguez, Radmila Filipovic, Josef Finsterer, Megan L. Fitzgerald, Manoela V. Fogaça, Diego A. Forero, Hamdy Fouad Moselhy, Marco Antonio de Freitas, Cherrie Galletly, Borja García-Bueno, Jodi M. Gatley, David Germanaud, Roger S. Gifford, Paul Glue, Gabriella Gobbi, Carlos Goicoechea, Emilio González-Arnay, Emilio González-Reimers, Rogelio González-Sarmiento, Linda Gowing, Kenneth L. Grieve, Rubem Carlos Araújo Guedes, Consuelo Guerri, Francisco S. Guimarães, Leila Guller, Jennifer Harland, Seyyed A. Hashemi, Shiva Hashemizadeh, Bei He, Salvador Hernández-López, Tyson Hickle, Shirley Y. Hill, Joan Holgate, Wei Huang, Wei-Lieh Huang, Nicholas J. Hunt, René Hurlemann, Giuseppe Iannone, Fariha Idrees, Jawaria Idrees, Kazutaka Ikeda, Nato Ivanashvili, Iliyan Ivanov, Joseph L. Jacobson, Sandra W. Jacobson, Torbjörn U.C. Järbe, Y.L. Jiang, Farzaneh Jokar, Cynthia J.M. Kane, Megan Kangiser, Victor Karpyak, Jean A. King, Bronwyn M. Kivell, Eugene A. Kiyatkin, Jochen Klein, Michelle L. Klima, Sodikdjon A. Kodirov, Michal Korostynski, Mary Jeanne Kreek, Svetlana Kulevanova, Santosh Kumar, Berthold Langguth, Mirna Bainy Leal, Sheng-Yu Lee, Tatia M.C. Lee, John Leikaif, Shih-Hsien Lin, Yu-Hsuan Lin, Xiu Liu, Valentina Lorenzetti, Ru-Band Lu, Rita Machaalani, Antoniette Maldonado-Devincci, Jean-François Mangin, Dimitra Mangoura, Patrick Manning, Jahan P. Marcu, Simon McCabe, M. Adrienne McGinn, Diana L. McKinney, Ryan McLaughin, Ian McLaughlin, Ernesta Meintjes, Narasimha M. Midde, Stefan Mihailescu, José Miñarro, Raffaella Mondola, A. Leslie Morrow, Nina R. Mota, Jeffrey Newcorn, Daisuke Nishizawa, José N. Nobrega, Christina N. Nona, Nicolas Nuñez, Ingrid Nylander, Jessica W. O’Brien, Francesco Oliva, Sara Palm, Mauricio R. Papini, Byung Lae Park, María Pascual, Juan Pedraza, Giampaolo Perna, Rocco Luigi Picci, Marcin Piechota, Vladimir Pilija, Charles Pinto, Stéphane Potvin, Jagdeo Prasad Rawat, Victor R. Preedy, Brittany M. Priddy, Ryszard Przewlocki, Jimit G. Raghav, Rajkumar Rajendram, Roshanna Rajendram, P.S.S. Rao, Anirban Ray, Ameneh Rezayof, Casto Rivadulla, Marta Rodríguez-Arias, Luciana Grazziotin Rossato, Diego L. Rovaris, Christina L. Ruby, Nikos Sakellaridis, Saad Salman, Francisco Santolaria-Fernández, Siddharth Sarkar, Jason B. Schechter, André Schmidt, Susan Scholl, April Scott, Masroor Shariff, Shiwali Sharma, Hyoung Doo Shin, Thakur Gurjeet Singh, Namita Sinha, Patrick D. Skosnik, Ranilson de Souza Bezerra, Dustin J. Stairs, Gjoshe Stefkov, Dan J. Stein, Cristina A.J. Stern, Claudia Stöllberger, Reinaldo N. Takahashi, H.C. Tang, Josephine Tarren, Philip G. Tibbo, Vinod Tiwari, Carmen Torres, Federica Trivelli, Penelope Truman, Emmanouella Tsirimonaki, Sven Vanneste, Andrea R. Vansickel, Leandro F. Vendruscolo, Maria S.M. Wai, Marc Walter, Karen A. Waters, Jeffrey L. Weiner, Jodi J. Weinstein, Jordyn Weisberg, Annie M. Whitaker, Sarah Wolf-Stanton, Chen-Ying Wu, Sharon L. Wu, Cheryl C.H. Yang, Yen Kuang Yang, Kirti Yeshwant Tandel, D.T. Yew, Yashar Yousefzadeh Fard, Yan Zhou

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::fcf12b9446119863402c7acf45328e6e
https://doi.org/10.1016/b978-0-12-800213-1.01002-6

P-881 - Anxiety, depression and quality of life in parents of children affected by rare diseases

Autor: C Marmo, Roberto Lala, Pier Maria Furlan, Francesco Oliva, Rocco Luigi Picci, Federica Trivelli

Publikováno v: European Psychiatry. 27:1

Introduction Rare diseases are chronically debilitating, possibly impairing the quality of life both of the patient and of his parents. Aims To examine the quality of life and the coping strategies of the parents of children affected with rare diseas

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::42d1d86f44b520ed782ccaf9e5cfc629
https://doi.org/10.1016/s0924-9338(12)75048-4