Process of Normalization in Families With Children Affected by Hemophilia

Emiliani, Francesca; Bertocchi, Sabrina; Potì, Silvia; Palareti, Laura

doi:10.1177/1049732311417456

Cited by 28 publications

(29 citation statements)

References 35 publications

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“…29 A process of normalization 30 has been described previously in families with children with hemophilia. 31 A normalization process means reconstructing family life and accepting the new situation as normal, 32 as the mothers in this study who accepted they could not travel "all over the world." Mothers viewed the ability to administer treatment "secretly" at home as allowing the child to be "normal."…”

Section: Discussionmentioning

confidence: 99%

Treatment of hemophilia: A qualitative study of mothers’ perspectives

Lippe

Frich

Harris

et al. 2016

Pediatric Blood & Cancer

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Section: Discussionmentioning

confidence: 99%

Treatment of hemophilia: A qualitative study of mothers’ perspectives

Lippe

Frich

Harris

et al. 2016

Pediatric Blood & Cancer

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“…Parents should educate a “close circle of friends/family including childcare and school” to facilitate “limited notice childcare” for emergency hospital care . Emiliani et al described this as a process of “normalisation” as families come to terms with having a child with haemophilia.…”

Section: Discussionmentioning

confidence: 99%

The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)

et al. 2019

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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.

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“…Thus, school-aged children with CHCs begin to learn how to navigate life and their conditions outside the home. Their families are then challenged to expand condition management from the home to include the school and the community as their children engage in these settings and rely more on adults outside the family structure (Emiliani, Bertocchi, Poti, & Palareti, 2011). …”

mentioning

confidence: 99%