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Your search keyword '"Alena G. Thiele"' showing total 2 results
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1. The impact of a child’s inborn error of metabolism: the parents’ perspectives on restrictions, discrimination, family planning, and emergency management

Author

Tanjana Harings, Martina P. Neininger, Simone Eisenhofer, Alena G. Thiele, Wieland Kiess, Astrid Bertsche, Thilo Bertsche, and Skadi Beblo

Subjects
Inborn errors of metabolism, Restrictions, Family planning, Metabolic emergency management, Parents’ perceptions, Medicine
Abstract

Abstract Background To investigate the impact of children’s inborn error of metabolism (IEMs) on the children’s and their parents’ lives from the parents’ perspective. We focused on disease-related restrictions in various issues of daily life, experienced discrimination, parental family planning, and management of metabolic emergencies. Methods We conducted a questionnaire-based survey with 108 parents of 119 children with IEM who attended a metabolic outpatient clinic. The children were categorized into 4 cohorts, based on increasing disease severity (cohort 1: IEMs with lowest severity, cohort 4: IEMs with highest severity), and compared by using Tobit regressions. Results The severity of the child’s IEM was associated with an increase in the intensity of perceived restrictions from the parents’ perspective for themselves and their children in all aspects of life: in general, in contact with friends, in the pursuit of hobbies, in childcare/school/occupation, and due to emotional stress. The highest intensity of restrictions in all cohorts was found for the parents themselves in contact with friends (compared to cohort 1: cohort 2: c. 3.556, p = 0.002; cohort 3: c. 4.159, p = 0.003; cohort 4: c. 7.224, p

Published
2024
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2. Psychological Well-Being of Parents of Very Young Children With Type 1 Diabetes – Baseline Assessment

Author

Carine de Beaufort, Ineke M. Pit-ten Cate, Ulrike Schierloh, Nathan Cohen, Charlotte K. Boughton, Martin Tauschmann, Janet M. Allen, Katrin Nagl, Maria Fritsch, James Yong, Emily Metcalfe, Dominique Schaeffer, Muriel Fichelle, Alena G. Thiele, Daniela Abt, Kerstin Faninger, Julia K. Mader, Sonja Slegtenhorst, Nicole Ashcroft, Malgorzata E. Wilinska, Judy Sibayan, Craig Kollman, Sabine E. Hofer, Elke Fröhlich-Reiterer, Thomas M. Kapellen, Carlo L. Acerini, Fiona Campbell, Birgit Rami-Merhar, Roman Hovorka, Apollo - University of Cambridge Repository, Pediatrics, Faculty of Medicine and Pharmacy, Boughton, Charlotte [0000-0003-3272-9544], and Hovorka, Roman [0000-0003-2901-461X]

Subjects
Male, Parents, Pediatrics, Child age, type 1 diabetes, Endocrinology, Diabetes and Metabolism, Anxiety, very young children, Endocrinology, Surveys and Questionnaires, Insulin, Age of Onset, Child, media_common, Original Research, Epworth Sleepiness Scale, Fear, Europe, Prosocial behavior, hypoglycemia fear, Child, Preschool, Female, Worry, parental well-being, Anxiety/epidemiology, Parents/psychology, Adult, medicine.medical_specialty, media_common.quotation_subject, Hypoglycemia, Hypoglycemia/prevention & control, sleepiness, Diseases of the endocrine glands. Clinical endocrinology, Europe/epidemiology, Child Behavior/psychology, Insulin Infusion Systems, Negatively associated, medicine, Humans, ddc:610, Type 1 diabetes, business.industry, Infant, Diabetes Mellitus, Type 1/blood, child behavior, RC648-665, medicine.disease, Diabetes Mellitus, Type 1, Fear/psychology, Psychological well-being, hypoglycemia fear, parental well-being, very young children, type 1 diabetes, child behavior, sleepiness, business, Insulin/administration & dosage
Abstract

BackgroundType 1 diabetes in young children is a heavy parental burden. As part of pilot phase of the KIDSAP01 study, we conducted a baseline assessment in parents to study the association between hypoglycemia fear, parental well-being and child behavior.MethodsAll parents were invited to fill in baseline questionnaires: hypoglycemia fear survey (HFS), WHO-5, Epworth Sleepiness Scale and Strength and Difficulties Questionnaire (SDQ).Results24 children (median age: 5-year, range 1-7 years, 63% male, mean diabetes duration: 3 ± 1.7 years) participated. 23/24 parents filled out the questionnaires. We found a higher score for the hypoglycemia fear behavior 33.9 ± 5.6 compared to hypoglycemia worry 34.6 ± 12.2. Median WHO-5 score was 16 (8 - 22) with poor well-being in two parents. Median daytime sleepiness score was high in five parents (>10). For six children a high total behavioral difficulty score (>16) was reported. Pro social behavior score was lower than normal in six children (r = - 0.50, p r = - 0.44, p r = - 0.45, p = .05) and positively with child age and diabetes duration (r = 0.58, p r = 0.6, p ConclusionRegular screening of parental well-being, hypoglycemia fear and child behavior should be part of routine care to target early intervention.

Published
2021

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