| Autor: |
Guillon Q; Université Toulouse Jean Jaurès, France., Baduel S; Université Toulouse Jean Jaurès, France., Bejarano-Martín Á; Universidad de Salamanca, Spain., Canal-Bedia R; Universidad de Salamanca, Spain., MagÁn-Maganto M; Universidad de Salamanca, Spain., FernÁndez-Álvarez C; Universidad de Salamanca, Spain., Martín-Cilleros MV; Universidad de Salamanca, Spain., SÁnchez-Gómez MC; Universidad de Salamanca, Spain., García-Primo P; Johannes Kepler University, Austria., Rose-Sweeney M; Dublin City University, Ireland., Boilson A; Dublin City University, Ireland., LinertovÁ R; Canary Island Foundation for Health Research (Fundación Canaria de Investigación Sanitaria/FUNCANIS) and Health Service Research Network for Chronic Diseases (Red de Investigación en Servicios de Salud en Enfermedades Crónicas/REDISSEC), Spain., Roeyers H; Ghent University, Belgium., Van der Paelt S; Ghent University, Belgium., Schendel D; iPSYCH, The Lundbeck Foundation Initiative for Integrative Psychiatric Research, Denmark.; Aarhus University, Denmark.; Drexel University, USA., Warberg CK; Aarhus University, Denmark., Cramer S; Aarhus University, Denmark., Narzisi A; IRCCS Stella Maris Foundation, Italy., Muratori F; IRCCS Stella Maris Foundation, Italy.; University of Pisa, Italy., Scattoni ML; Istituto Superiore di Sanità, Italy., Moilanen I; University of Oulu, Finland.; Oulu University Hospital, Finland., Yliherva A; University of Tampere, Finland., Saemundsen E; States Diagnostic and Counselling Centre, Iceland., Jonsdottir SL; States Diagnostic and Counselling Centre, Iceland., Efrim-Budisteanu M; Victor Babes - National Institute of Pathology, Romania., Arghir A; Victor Babes - National Institute of Pathology, Romania., Papuc SM; Victor Babes - National Institute of Pathology, Romania., Vicente A; Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal., Rasga C; Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal., Xenia Kafka J; Medical University of Vienna, Austria., Poustka L; University Medical Centre Göttingen, Germany., Kothgassner OD; Medical University of Vienna, Austria., Kawa R; University of Warsaw, Poland., Pisula E; University of Warsaw, Poland., Sellers T; National Autistic Society (NAS), UK., Posada de la Paz M; Carlos III Institute of Health, Spain., Rogé B; Université Toulouse Jean Jaurès, France. |
| Abstrakt: |
Lay Abstract: Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process. |
