Symptoms and Problems in Children with Inherited Metabolic Diseases and Factors Affecting the Caregiver Burden of Mothers


Arpaci T., ALTAY N., KILIÇARSLAN TÖRÜNER E., Gunduz M.

Comprehensive Child and Adolescent Nursing, vol.43, pp.363-377, 2020 (ESCI) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume: 43
  • Publication Date: 2020
  • Doi Number: 10.1080/24694193.2019.1687611
  • Journal Name: Comprehensive Child and Adolescent Nursing
  • Journal Indexes: Emerging Sources Citation Index (ESCI), Scopus, Academic Search Premier, ASSIA, CINAHL, EMBASE, MEDLINE, Psycinfo
  • Page Numbers: pp.363-377
  • Keywords: Inherited metabolic diseases, children, parents, caregiver burden, HEALTH-RELATED QUALITY, INVESTIGATING TIME BURDEN, OF-LIFE, PHENYLKETONURIA, PARENTS, DISORDERS, IMPACT, PERSPECTIVES, FAMILIES, OUTCOMES
  • Gazi University Affiliated: Yes

Abstract

Parents need to constantly monitor their children with inherited metabolic diseases (IMDs) and have difficulty coordinating care. The aim of this descriptive study was to determine the symptoms and problems in children with IMDs and factors affecting caregiver burden. The study was conducted in a pediatric hospital. The study sample consisted of 47 mothers of children with IMDs. Data were collected using a descriptive characteristics form (DCF), a data collection form related to symptoms and problems (DCFSP), and a caregiver burden inventory (CBI). The most common specific problems were hepatomegaly (36.2%), developmental delay (27.7%), and muscle weakness (14.9%). Mothers' CBI mean total score was 30.23 +/- 19.65. Mothers whose children were partially or completely dependent had significantly higher scores than others. Mothers who expressed the family income status as "an expenses more than income" had higher CBI scores. Understanding the problems of children with IMD and factors effecting caregiver burden of mothers can help health-care professionals to identify patients' and their families' needs and facilitate the development of nursing interventions for effective care and reduction of caregiver burden. These results can be used to improve the nursing care of children with IMDs and their families.