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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition.

Abstract：

AIMS AND OBJECTIVES:To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. BACKGROUND:Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. DESIGN:A multicentre, cross-sectional study. METHODS:Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5-point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process. RESULTS:Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self-infused, had another family member with haemophilia or if the parent had more children. CONCLUSIONS:Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity. RELEVANCE TO CLINICAL PRACTICE:More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.

journal_name

J Clin Nurs

journal_title

Journal of clinical nursing

authors

Myrin Westesson L,Sparud-Lundin C,Baghaei F,Khair K,von Mackensen S,Acuña Mora M,Wallengren C

doi

10.1111/jocn.15003

subject

Has Abstract

pub_date

2019-11-01 00:00:00

pages

4077-4086

issue

21-22

eissn

0962-1067

issn

1365-2702

journal_volume

pub_type

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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition.