What are the information needs of parents caring for a child with Glutaric aciduria type 1?

[1]  A. Wittkowski,et al.  Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents , 2018, Journal of Genetic Counseling.

[2]  K. Machaczek,et al.  Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency , 2017, Global qualitative nursing research.

[3]  Chih-jou Lai,et al.  Experiences during newborn screening for glutaric aciduria type 1: Diagnosis, treatment, genotype, phenotype, and outcomes , 2017, Journal of the Chinese Medical Association : JCMA.

[4]  Johannes Zschocke,et al.  Proposed recommendations for diagnosing and managing individuals with glutaric aciduria type I: second revision , 2017, Journal of Inherited Metabolic Disease.

[5]  M. Baumgartner,et al.  Impact of age at onset and newborn screening on outcome in organic acidurias , 2016, Journal of Inherited Metabolic Disease.

[6]  S. Waserman,et al.  Evaluating a handbook for parents of children with food allergy: a randomized clinical trial. , 2016, Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology.

[7]  G. Hoffmann,et al.  Living with an inborn error of metabolism detected by newborn screening—Parents’ perspectives on child development and impact on family life , 2014, Journal of Inherited Metabolic Disease.

[8]  O. Robinson Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide , 2014 .

[9]  A. Petros Kostagiolas,et al.  Information seeking behaviour of parents of paediatric patients for clinical decision making: the central role of information literacy in a participatory setting , 2013, Inf. Res..

[10]  C. Greenberg,et al.  Complementary dietary treatment using lysine-free, arginine-fortified amino acid supplements in glutaric aciduria type I - A decade of experience. , 2012, Molecular genetics and metabolism.

[11]  N. Longo,et al.  Glutaric acidemia type 1: outcomes before and after expanded newborn screening. , 2012, Molecular genetics and metabolism.

[12]  E. Gage,et al.  The devil you know: parents seeking information online for paediatric cancer. , 2012, Sociology of health & illness.

[13]  V. D. Di Ciommo,et al.  Adherence to diet and quality of life in patients with phenylketonuria , 2011, Acta paediatrica.

[14]  M. Leichsenring,et al.  Efficacy and outcome of expanded newborn screening for metabolic diseases - Report of 10 years from South-West Germany * , 2011, Orphanet journal of rare diseases.

[15]  I. Harting,et al.  Use of guidelines improves the neurological outcome in glutaric aciduria type I , 2010, Annals of neurology.

[16]  J. Christodoulou,et al.  Glutaric aciduria type I: outcome following detection by newborn screening , 2008, Journal of Inherited Metabolic Disease.

[17]  C. Hendriksz,et al.  Does maternal knowledge and parent education affect blood phenylalanine control in phenylketonuria? , 2008, Journal of human nutrition and dietetics : the official journal of the British Dietetic Association.

[18]  A. Boneh,et al.  Newborn screening for glutaric aciduria type I in Victoria: treatment and outcome. , 2008, Molecular genetics and metabolism.

[19]  T. Coşkun,et al.  Does maternal knowledge impact blood phenylalanine concentration in Turkish children with phenylketonuria? , 2008, Journal of Inherited Metabolic Disease.

[20]  M. Wintermark,et al.  Multimodal imaging of striatal degeneration in Amish patients with glutaryl-CoA dehydrogenase deficiency. , 2007, Brain : a journal of neurology.

[21]  C. Grbich,et al.  Parental food allergy information needs: a qualitative study , 2007, Archives of Disease in Childhood.

[22]  R. Woodgate,et al.  "Living with risk": mothering a child with food-induced anaphylaxis. , 2007, Journal of pediatric nursing.

[23]  Alda Hummelinck,et al.  Parents' information needs about the treatment of their chronically ill child: a qualitative study. , 2006, Patient education and counseling.

[24]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[25]  M. Crone,et al.  Influence of knowledge of the disease on metabolic control in phenylketonuria , 2003, European Journal of Pediatrics.

[26]  M. Sandelowski Focus on Research Methods Whatever Happened to Qualitative Description? , 2022 .

[27]  Hilde van der Togt,et al.  Publisher's Note , 2003, J. Netw. Comput. Appl..

[28]  J. Thompson,et al.  Outcome of the first 3-years of a DNA-based neonatal screening program for glutaric acidemia type 1 in Manitoba and northwestern Ontario, Canada. , 2002, Molecular genetics and metabolism.