Linda Myrin Westesson1,2, Carina Sparud-Lundin2, Fariba Baghaei1, Kate Khair3, Sylvia von Mackensen4, Mariela Acuña Mora2,5, Catarina Wallengren2,6. 1. Sahlgrenska University Hospital, Gothenburg, Sweden. 2. Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. 3. Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Trust, London, UK. 4. Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany. 5. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. 6. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
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.
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.
Authors: Karen Beny; Benjamin du Sartz de Vigneulles; Valerie Chamouard; Ronald Guilloux; Valérie Gay; Claude Negrier; Claude Dussart Journal: Patient Prefer Adherence Date: 2021-08-18 Impact factor: 2.711