Becoming a parent to a child with birth asphyxia—From a traumatic delivery to living with the experience at home

Heringhaus, Alina; Dellenmark‐Blom, Michaela; Wigert, Helena

doi:10.3402/qhw.v8i0.20539

Cited by 41 publications

(60 citation statements)

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“…The greatest difficulty for the parents of ill children is definitely the disease of a child and coping with it (see Table 5). This is consistent with Lansdown et al [11], and also Heringhaus et al [16]. The significantly lower life satisfaction, in comparison to the control group, is probably also determined by the necessity for limitations to be set due to the child's disease.…”

Section: Discussionsupporting

confidence: 89%

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The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

Mącik¹,

Kowalska-Dąbrowska²

2015

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Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known about the disease from the medical perspective, but there are still only a few studies about the psychological condition of the patient or his family. The birth of a child with EB may become a trauma for the parents. Parents' feelings also vary depending on the type of EB. Objective. The main aim of the study was to determine whether, and in what way, having a child suffering from EB influences parents' life and psychological well-being. Due to this aim, life satisfaction, life attitudes and the need for social support were measured. Material and methods. Twenty-one parents of ill children were studied (13 mothers, 8 fathers; 16 parents had one child with EB and 5 parents two). Six children suffered from EB simplex, 1 child from junctional EB and 14 from dystrophic EB. The course of the disease was mild in 9 children and severe in 12. As the control group 22 parents of healthy children were chosen. Results. The parents of ill children have a greater need for social support from family, both general, and instrumental, appraisal and emotional. The need for support from medical institutions is at a low level. In life attitudes there are also significant differences. Parents of ill children have a higher level of existential vacuum, and a lower level of life control and life purpose. Also the life satisfaction is lower. Conclusions. The results of our study indicate that a child suffering from EB is a heavy burden for the parents. streszczenie Wprowadzenie. Epidermolysis bullosa (EB) jest grupą rzadkich genetycznych chorób skóry, pojawiających się raz na kilkaset urodzeń. Z medycznego punktu widzenia choroba jest dobrze poznana, ale wciąż niewiele jest opracowań dotyczących problemów psychologicznych chorego i jego rodziny. Narodziny dziecka z EB mogą stać się specyficznym rodzajem traumy dla jego rodziców, a ich odczucia zależą również od typu i przebiegu choroby. W części piśmiennictwa sugeruje się, że EB jest obciążeniem nie tylko dla chorego, lecz także dla jego rodziny. Cel pracy. Głównym celem prezentowanych badań było sprawdzenie, czy i w jaki sposób posiadanie dziecka chorego na EB wiąże się z różny-the need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa zapotrzebowanie na wsparcie społeczne, postawy życiowe i satysfakcja z życia rodziców dzieci chorych na epidermolysis bullosa

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Section: Discussionsupporting

confidence: 89%

“…Each situation affects the parents of ill children differently. Taking care of an incurably ill child often puts a parent in a hard situation and requires an assessment of the child's needs at every stage of being with it [12][13][14][15][16]. In the case of EB, there are practically no such studies at all.…”

mentioning

confidence: 99%

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

Mącik¹,

Kowalska-Dąbrowska²

2015

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“…Heringhaus et al [10] and Nassef et al [11] identified "emotional landscapes", which included vulnerability, sadness, guilt, feeling that the treatment was not natural, hope, despair, powerlessness, and gratefulness. In both studies, anxieties about the results from the brain MRI and the uncertainties about long term outcomes following neonatal encephalopathy and HT treatment were highlighted as areas contributing to parental stress and anxieties.…”

Section: Discussionmentioning

confidence: 99%

“…The few available studies suggest that bonding and attachment between parents and baby may be particularly affected by the nature of the intervention. [10,11] The effectiveness of communication between families faced with this condition and the medical teams and their coping mechanisms are also unknown.…”

Section: Main Papermentioning

confidence: 99%

Parental perceptions of hypothermia treatment for neonatal hypoxic-ischaemic encephalopathy

Thyagarajan

Baral

Gunda

et al. 2017

The Journal of Maternal-Fetal & Neonatal Medicine

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confidence: 99%

Parent and Provider Decision-Making for Infants with Hypoxic-Ischemic Encephalopathy

Dh¹

2014

J Preg Child Health

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determine how the response affects decision-making.Parents experience intense distress and shock after giving birth and learning that their 'normal' infant has suffered brain damage [8,12,13]. Some parents report sadness, guilt, and powerlessness over the intensive care environment within the first hours and days of delivery [7]. Research has shown that parents have difficulty processing information under such stress [9,[14][15][16]. This is made more complex for parents of infants with HIE because their newborn often has a healthy, well-developed appearance. Yet these parents are forced to make decisions about treatments within 6-24 hours of birth because this time is when therapies are thought to be most effective [17][18][19][20]. The stress parents experience does not end once the infant is discharged because many infants require follow-up care including physical and occupation therapy and continued assessments from specialists [8]. Causes of distress and anxiety after discharge include lack of understanding of the disease, lack of information on how to access services for their infant, and difficulty communicating with healthcare providers [8,21,22]. Parents continue to make decisions under high levels of stress and anxiety throughout the infants' lives, but how stress and anxiety affect their decision-making remains unknown. Therefore, AbstractBackground: Hypoxic ischemic encephalopathy (HIE) is one of the most serious complications of full term birth that can lead to long-term neurological consequences or death. Parents and providers are faced with making complex decisions about which therapies to pursue within hours of birth.Purpose: The purpose of this study was to describe the decisions made for infants with HIE, who participated in the decision-making process, and what factors influenced the decision-making process.Design: A longitudinal, prospective, multiple case study design was used to study infant illness trajectories and parental responses (parental distress and hope) associated with caring for infants with HIE.Results: Two groups of parent decision-making emerged: standard care and experimental care. The decisionmaking groups appear to be dictated by the treatment the infants received within hours of birth. Parents within each group shared specific responses including similar hope and distress, which continued over the first 2 postnatal months. Conclusions:The results indicate that the type of medical therapy the infant receives determines the level of parental participation in decision-making. In the group of parents, in which providers obtained consent for study interventions parents had less hope for their infant even though the infant had a lower severity of illness compared to the infants receiving standard therapies. The reverse was true for parents of infants receiving standard therapy, parents were more hopeful even though their infants had a higher severity of illness. Journal of Pregnancy and Child Health Parent demographicsParents completed a demographic questionnaire upon enrollme...

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Becoming a parent to a child with birth asphyxia—From a traumatic delivery to living with the experience at home

Cited by 41 publications

References 45 publications

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

Parental perceptions of hypothermia treatment for neonatal hypoxic-ischaemic encephalopathy

Parent and Provider Decision-Making for Infants with Hypoxic-Ischemic Encephalopathy

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