The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study)
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The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study). / von Mackensen, Sylvia; Myrin Westesson, Linda; Kavakli, Kaan; Klukowska, Anna; Escuriola, Carmen; Uitslager, Nanda; Santoro, Cristina; Holland, Mike; Khair, Kate.
in: HAEMOPHILIA, Jahrgang 25, Nr. 3, 05.2019, S. 424-432.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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T1 - The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study)
AU - von Mackensen, Sylvia
AU - Myrin Westesson, Linda
AU - Kavakli, Kaan
AU - Klukowska, Anna
AU - Escuriola, Carmen
AU - Uitslager, Nanda
AU - Santoro, Cristina
AU - Holland, Mike
AU - Khair, Kate
N1 - © 2019 John Wiley & Sons Ltd.
PY - 2019/5
Y1 - 2019/5
N2 - INTRODUCTION: Caring for a child with haemophilia is burdensome and impacting on caregivers' emotional and financial status. This paper assesses the impact of psychosocial determinants on caregivers' burden across European countries.METHODS: This non-interventional study enrolled caregiver/child dyads at haemophilia treatment centres (HTCs) using the "HEMOphilia associated CAregiver Burden scale" (HEMOCAB). Socio-demographic characteristics and clinical data were collected.RESULTS: A total of 144 dyads from Germany (n = 19), Italy (n = 19), Netherlands (n = 19), Turkey (n = 20), Sweden (n = 21), UK (n = 21) and Poland (n = 25) participated. Caregivers' mean age was 39.84 ± 7 (range 24-57); 81.3% were mothers, married (80.4%), living with a partner (86.6%), had a college/university degree (66.5%) and worked (74.2%). Around two thirds of caregivers (66.2%) reported that haemophilia affected their life; 26.8% reported an economic impact; 57.6% reported their child cannot do certain things because of his condition. Caregivers lost an average of 8.35 ± 14.5 days due to haemophilia. The highest burden was reported in the HEMOCAB domains "Perception of Child" (37.9 ± 24.7), "Emotional Stress" (37.4 ± 22.6) and "Medical Management" (33.1 ± 22.8). Significantly, higher burden was found in caregivers who reported that haemophilia "affects their life" (P < 0.0001), "has an economic impact" (P < 0.0001), "their child cannot do certain things" (P < 0.0001), "they spent ≥5 h/mo infusing" (P < 0.003) and "they needed ≥3 h/mo to reach the HTC" (P < 0.0001).CONCLUSION: This "snapshot" analysis of burden related to caring for a child with haemophilia across Europe revealed the greatest burdens are economic, including days lost from work, and things that a child cannot do, impacting on both child and caregiver.
AB - INTRODUCTION: Caring for a child with haemophilia is burdensome and impacting on caregivers' emotional and financial status. This paper assesses the impact of psychosocial determinants on caregivers' burden across European countries.METHODS: This non-interventional study enrolled caregiver/child dyads at haemophilia treatment centres (HTCs) using the "HEMOphilia associated CAregiver Burden scale" (HEMOCAB). Socio-demographic characteristics and clinical data were collected.RESULTS: A total of 144 dyads from Germany (n = 19), Italy (n = 19), Netherlands (n = 19), Turkey (n = 20), Sweden (n = 21), UK (n = 21) and Poland (n = 25) participated. Caregivers' mean age was 39.84 ± 7 (range 24-57); 81.3% were mothers, married (80.4%), living with a partner (86.6%), had a college/university degree (66.5%) and worked (74.2%). Around two thirds of caregivers (66.2%) reported that haemophilia affected their life; 26.8% reported an economic impact; 57.6% reported their child cannot do certain things because of his condition. Caregivers lost an average of 8.35 ± 14.5 days due to haemophilia. The highest burden was reported in the HEMOCAB domains "Perception of Child" (37.9 ± 24.7), "Emotional Stress" (37.4 ± 22.6) and "Medical Management" (33.1 ± 22.8). Significantly, higher burden was found in caregivers who reported that haemophilia "affects their life" (P < 0.0001), "has an economic impact" (P < 0.0001), "their child cannot do certain things" (P < 0.0001), "they spent ≥5 h/mo infusing" (P < 0.003) and "they needed ≥3 h/mo to reach the HTC" (P < 0.0001).CONCLUSION: This "snapshot" analysis of burden related to caring for a child with haemophilia across Europe revealed the greatest burdens are economic, including days lost from work, and things that a child cannot do, impacting on both child and caregiver.
KW - Adaptation, Psychological
KW - Adult
KW - Caregivers/psychology
KW - Child
KW - Europe
KW - Family/psychology
KW - Female
KW - Hemophilia A
KW - Hemophilia B
KW - Humans
KW - Male
KW - Quality of Life
KW - Stress, Psychological
KW - Surveys and Questionnaires
U2 - 10.1111/hae.13684
DO - 10.1111/hae.13684
M3 - SCORING: Journal article
C2 - 30974034
VL - 25
SP - 424
EP - 432
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
IS - 3
ER -
