The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies
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The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies. / Rambod, Masoume; Pasyar, Nilofar; Irannejad Parizi, Fatemeh; Edraki, Mitra; Khair, Kate; von Mackensen, Sylvia.
in: HAEMOPHILIA, Jahrgang 29, Nr. 1, 01.2023, S. 199-209.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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TY - JOUR
T1 - The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies
AU - Rambod, Masoume
AU - Pasyar, Nilofar
AU - Irannejad Parizi, Fatemeh
AU - Edraki, Mitra
AU - Khair, Kate
AU - von Mackensen, Sylvia
N1 - © 2022 The Authors. Haemophilia published by John Wiley & Sons Ltd.
PY - 2023/1
Y1 - 2023/1
N2 - INTRODUCTION: The use of virtual interventions is of interest to patients with chronic disease and healthcare professionals. This study aimed to determine the effect of virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies. Moreover, the effect of this intervention on children's acute pain and bleeds was assessed.METHODS: This clinical trial was conducted on 80 caregivers of children with coagulation factor deficiencies. The subjects were randomly assigned into the intervention and control groups. A comprehensive virtual child disease management programme was conducted for 8 weeks and caregiver' burden and their social adjustment were assessed with the HEMOCAB and social adjustment subscale of Bell Adjustment Inventory, respectively. Data were analysed using ANCOVA and Wilcoxon test.RESULTS: Before the intervention, both groups were similar regarding the caregivers' burden and social adjustment and children's acute pain and bleeds. However, a significant difference was observed between groups in concern to caregivers' burden (P < .001), women's and men's social adjustment (P = .001, P = .03), and children's acute pain and bleeds (P < .001) after the virtual disease management programme.CONCLUSION: This study showed that using a virtual child disease management programme reduced burden and improved social adjustment of caregivers of children with coagulation factor deficiencies. This intervention decreased frequencies of acute pain and bleeds in children. Therefore, using this effective intervention in clinical practice is warranted to decrease the caregivers' burden as well as acute pain and bleeds in children.
AB - INTRODUCTION: The use of virtual interventions is of interest to patients with chronic disease and healthcare professionals. This study aimed to determine the effect of virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies. Moreover, the effect of this intervention on children's acute pain and bleeds was assessed.METHODS: This clinical trial was conducted on 80 caregivers of children with coagulation factor deficiencies. The subjects were randomly assigned into the intervention and control groups. A comprehensive virtual child disease management programme was conducted for 8 weeks and caregiver' burden and their social adjustment were assessed with the HEMOCAB and social adjustment subscale of Bell Adjustment Inventory, respectively. Data were analysed using ANCOVA and Wilcoxon test.RESULTS: Before the intervention, both groups were similar regarding the caregivers' burden and social adjustment and children's acute pain and bleeds. However, a significant difference was observed between groups in concern to caregivers' burden (P < .001), women's and men's social adjustment (P = .001, P = .03), and children's acute pain and bleeds (P < .001) after the virtual disease management programme.CONCLUSION: This study showed that using a virtual child disease management programme reduced burden and improved social adjustment of caregivers of children with coagulation factor deficiencies. This intervention decreased frequencies of acute pain and bleeds in children. Therefore, using this effective intervention in clinical practice is warranted to decrease the caregivers' burden as well as acute pain and bleeds in children.
KW - Male
KW - Child
KW - Humans
KW - Female
KW - Caregivers
KW - Social Adjustment
KW - Acute Pain
KW - Hemophilia A
KW - Hemorrhage
KW - Surveys and Questionnaires
KW - Disease Management
KW - Blood Coagulation Factors
U2 - 10.1111/hae.14678
DO - 10.1111/hae.14678
M3 - SCORING: Journal article
C2 - 36264198
VL - 29
SP - 199
EP - 209
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
IS - 1
ER -
