Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases
暂无分享,去创建一个
L. Vissers | J. Veltman | T. Kleefstra | E. Kamsteeg | M. Willemsen | S. van der Burg | J. Schieving | L. Krabbenborg | L. Vissers | S. Burg | Lisenka E.L.M. Vissers | Jolanda H. Schieving | Tjitske Kleefstra | Erik-Jan Kamsteeg | Joris A. Veltman | Michèl A.A.P. Willemsen | S. van der Burg
[1] J. Veltman,et al. Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs , 2016, Clinical genetics.
[2] M. Cornel,et al. A genetic diagnosis of maturity‐onset diabetes of the young (MODY): experiences of patients and family members , 2015, Diabetic medicine : a journal of the British Diabetic Association.
[3] E. Estrella,et al. “Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families , 2015, Journal of Genetic Counseling.
[4] Victoria A. Miller,et al. Stakeholders’ Opinions on the Implementation of Pediatric Whole Exome Sequencing: Implications for Informed Consent , 2014, Journal of Genetic Counseling.
[5] Julia Wynn,et al. The usefulness of whole-exome sequencing in routine clinical practice , 2014, Genetics in Medicine.
[6] C. Palmer,et al. Next Generation Genetic Counseling: Introduction to the Special Issue , 2014, Journal of Genetic Counseling.
[7] Julie C. Sapp,et al. Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children , 2014, Clinical genetics.
[8] Amie M. Blanco,et al. Lynch Syndrome Patients’ Views of and Preferences for Return of Results Following Whole Exome Sequencing , 2014, Journal of Genetic Counseling.
[9] Q. Waisfisz,et al. Informed consent for exome sequencing in diagnostics: exploring first experiences and views of professionals and patients , 2013, Clinical genetics.
[10] Paul S. Appelbaum,et al. Informed consent for return of incidental findings in genomic research , 2013, Genetics in Medicine.
[11] H. Turunen,et al. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. , 2013, Nursing & health sciences.
[12] B. V. van Bon,et al. Diagnostic exome sequencing in persons with severe intellectual disability. , 2012, The New England journal of medicine.
[13] D. Navon. Genetic Counseling, Activism and ‘Genotype-First’ Diagnosis of Developmental Disorders , 2012, Journal of Genetic Counseling.
[14] J. Shendure,et al. Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms , 2012, American journal of medical genetics. Part A.
[15] J. Fanos. New “first families”: the psychosocial impact of new genetic technologies , 2012, Genetics in Medicine.
[16] Marian Reiff,et al. “What does it mean?”: Uncertainties in understanding results of chromosomal microarray testing , 2012, Genetics in Medicine.
[17] Christian Gilissen,et al. A de novo paradigm for mental retardation , 2010, Nature Genetics.
[18] U. Hallberg,et al. 22q11 deletion syndrome - the meaning of a diagnosis. A qualitative study on parental perspectives. , 2010, Child: care, health and development.
[19] A. Davis,et al. A place for genetic uncertainty: parents valuing an unknown in the meaning of disease. , 2007, Social science & medicine.
[20] L. Skov,et al. Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled. , 2007, Child: care, health and development.
[21] L. Brookes-Howell. Living without labels: the interactional management of diagnostic uncertainty in the genetic counselling clinic. , 2006, Social science & medicine.
[22] C. L. Webb. Parents' perspectives on coping with Duchenne muscular dystrophy. , 2005, Child: care, health and development.
[23] H. Skirton. The Client's Perspective of Genetic Counseling—A Grounded Theory Study , 2001, Journal of Genetic Counseling.
[24] L. Eisenberg. Disease and illness Distinctions between professional and popular ideas of sickness , 1977, Culture, medicine and psychiatry.
[25] H. Boeije. Analyseren in kwalitatief onderzoek : denken en doen , 2005 .
[26] B. Hofmann. On the triad disease, illness and sickness. , 2002, The Journal of medicine and philosophy.
[27] B. Emanuel,et al. The 22q11 Deletion , 1998 .