Understanding Daily, Emotional, and Physical Burdens and Needs of Parents Caring for Children with Type 1 Diabetes

Author:

Saßmann Heike1ORCID,Kim-Dorner Su-Jong1ORCID,Berndt Verena2,Biester Torben3ORCID,Dehn-Hindenberg Andrea1ORCID,Heidtmann Bettina4ORCID,Jorch Norbert5,Lilienthal Eggert6,Nellen-Hellmuth Nicole7ORCID,Neu Andreas8ORCID,Schaaf Katja9ORCID,Ziegler Ralph10ORCID,Lange Karin1ORCID

Affiliation:

1. Hannover Medical School, Medical Psychology, Hannover, Germany

2. Sana Hospital Group Berlin-Brandenburg, Social-Pediatric Centre Lichtenberg, Berlin, Germany

3. Children’s Hospital AUF DER BULT, Diabetes-Centre for Children and Adolescents, Hannover, Germany

4. Catholic Children’s Hospital Wilhelmstift, Hamburg, Germany

5. Bielefeld University, University Clinic for Pediatrics, Evang. Klinikum Bethel, Bielefeld, Germany

6. University Clinic Ruhr-University Bochum, University Children’s Hospital, Bochum, Germany

7. Leopoldina-Hospital Schweinfurt, Clinic for Pediatrics, Schweinfurt, Germany

8. Eberhard Karls University Tübingen, Pediatric Endocrinology and Diabetes, Tübingen, Germany

9. Elisabeth-Hospital-Essen, Pediatrics, Essen, Germany

10. Diabetes Clinic for Children and Adolescents Münster, Münster, Germany

Abstract

Aims. To investigate (1) daily, emotional, and physical caregiving burdens in parents of children with type 1 diabetes, (2) the sociodemographic and clinical predictors of three burdens, and (3) support measures that parents wish to receive. Methods. The study was a multicenter cross-sectional survey conducted in nine German pediatric diabetes centers. A questionnaire assessing three types of burdens and wishes for support was distributed to parents with a child with type 1 diabetes visiting one of the pediatric centers for a routine check-up. Results. Data from 1,107 parents (83% mothers) were analyzed. Parents reported significantly higher emotional burdens compared to daily and physical burdens ( p < 0.0001 ). Mothers felt more burdened than fathers did. Parents of younger children reported higher daily and physical burdens compared to the parents of older children, and similarly, parents of technology users reported higher daily and physical burdens compared to the parents of nontechnology users. However, emotional burdens did not differ in both comparisons. Other demographic factors (i.e., parent’s age, migration status, and single-parent family status) predicted high levels of daily or physical burdens, but only HbA1c level and the parent’s gender (mother) predicted a high emotional burden. Independent of the level of burden, 78% of parents wanted additional diabetes training. Conclusion. Despite parents reporting high emotional burdens in connection with diabetes care, HbA1c and the gender of the reporting parent were the only risk factors. As the child gets older, parents’ daily and physical distress decrease but not the emotional burden. Diabetes training including regularly offered booster sessions as well as low-threshold interventions for mental health issues and practical self-care skills is recommended to provide continuous support for parents.

Funder

diabetesDE-Deutsche Diabetes Hilfe

Publisher

Hindawi Limited

Subject

Endocrinology,Endocrinology, Diabetes and Metabolism

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