Quality of Life in Parents of Children With Biliary Atresia

Rodijk, Lyan H; Schins, Eke M. W.; Witvliet, M.; Alizadeh, Behrooz Z.; Verkade, Henkjan J.; Kleine, Ruben H de; Hulscher, Jan B F; Bruggink, Janneke L M

doi:10.1097/mpg.0000000000002858

Cited by 8 publications

(9 citation statements)

References 33 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Previously, we investigated the QoL of parents of children with BA who already reached school age. [10] We speculate that, over years, parents get accustomed with the chronic disease of their child, resulting in lower levels of anxiety and stress.…”

Section: Discussionmentioning

confidence: 97%

“…Anxiety symptoms, as perceived by mothers, significantly decreased from 48 during KPE hospitalization to 37 after 2-3 years of follow-up (Z=-2.29, p=0.02, n=10). Stress levels in mothers significantly decreased from 18 [6-30] at 1-2 months after KPE to 13 [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22] after 2-3 years of follow-up (Z=-2.51, p=0.01, n=11). In mothers, psychological QoL significantly decreased between 1-2 months after KPE and when the child reached the age of 2-3 years (Z=-2.56, p=0.01, n=10).…”

Section: Change In Psychosocial Outcomes Over Timementioning

confidence: 99%

“…[9] Previously, we observed that parents of BA patients at school age report comparable levels of anxiety, stress and QoL as the general population. [10] However, data on psychosocial outcomes, that is symptoms of anxiety and stress, and its effect on QoL in parents early after BA diagnosis is lacking. It is at these times that it would be very helpful to sufficiently support and, if needed, provide psychological treatment for the parents.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study

Rodijk¹,

Kleine²,

Verkade³

et al. 2022

Journal of Pediatric Surgery

Self Cite

View full text Add to dashboard Cite

This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

show abstract

Section: Discussionmentioning

confidence: 97%

Section: Change In Psychosocial Outcomes Over Timementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study

Rodijk¹,

Kleine²,

Verkade³

et al. 2022

Journal of Pediatric Surgery

Self Cite

View full text Add to dashboard Cite

show abstract

“…Liang et al [ 5 ] also observed that having other medical conditions impacted negatively on the HRQOL; an additional factor that impacted the HRQOL was the parents’ knowledge of LT [ 5 ]. In general, HRQOL of parents of children with BA was adversely affected [ 6 ]; Wong et al [ 7 ] performed similar analyses and noted that HRQOL scores did not differ in general between those with a native liver and those post LT.…”

Section: Health Status Of Survivorsmentioning

confidence: 99%

Biliary Atresia in Adolescence and Adult Life: Medical, Surgical and Psychological Aspects

Kelly

Samyn

Schwarz

2023

JCM

View full text Add to dashboard Cite

Prior to 1955, when Morio Kasai first performed the hepatic portoenterostomy procedure which now bears his name, Biliary atresia (BA) was a uniformly fatal disease. Both the Kasai procedure and liver transplantation have markedly improved the outlook for infants with this condition. Although long-term survival with native liver occurs in the minority, survival rates post liver transplantation are high. Most young people born with BA will now survive into adulthood but their ongoing requirements for health care will necessitate their transition from a family-centred paediatric service to a patient-centred adult service. Despite a rapid growth in transition services over recent years and progress in transitional care, transition from paediatric to adult services is still a risk for poor clinical and psychosocial outcomes and increased health care costs. Adult hepatologists should be aware of the clinical management and complications of biliary atresia and the long-term consequences of liver transplantation in childhood. Survivors of childhood illness require a different approach to that for young adults presenting after 18 years of age with careful consideration of their emotional, social, and sexual health. They need to understand the risks of non-adherence, both for clinic appointments and medication, as well as the implications for graft loss. Developing adequate transitional care for these young people is based on effective collaboration at the paediatric–adult interface and is a major challenge for paediatric and adult providers alike in the 21st century. This entails education for patients and adult physicians in order to familiarise them with the long-term complications, in particular for those surviving with their native liver and the timing of consideration of liver transplantation if required. This article focusses on the outcome for children with biliary atresia who survive into adolescence and adult life with considerations on their current management and prognosis.

show abstract

“…Due to the lack of effective coping skills, parents may experience negative psychological symptoms, such as anxiety and depression. 10 Previous studies have shown that mothers' negative emotions can affect infants and lead to acute and chronic diseases. [11][12][13] These negative emotions also have sustained adverse effects on the psychological and cognitive ability of their offspring, which may lead to social dysfunction and behavioral problems.…”

Section: E108mentioning

confidence: 99%

Psychological Journey and Coping Styles of Parents of Infants With Biliary Atresia

Zhang¹,

Wu²,

Bao³

et al. 2023

Advances in Neonatal Care

View full text Add to dashboard Cite

Background: Biliary atresia is a rare and serious neonatal disease that affects the quality of life of both infants and parents. There is currently limited literature on the experiences of parents with infants diagnosed with biliary atresia. Purpose: To explore the psychological journey and coping styles of parents of infants with biliary atresia in a single center in Shanghai, China. Methods: A qualitative study design was used. Face-to-face and semistructured interviews were conducted with 10 parents of infants with biliary atresia. Colaizzi's method of data analysis was utilized, using NVivo 11.0 software. Results: The psychological journey and coping styles of parents could be divided into 4 stages. Different themes were extracted at different stages: before diagnosis, parents experienced complex emotions and actively sought treatment; at the diagnosis stage, negative emotions dominated and parents convinced themselves to accept reality; in the postoperative stage, positive emotions, accepting reality, active response, and the need to learn to take care of their infant gradually appeared; and at the discharge stage, parents accepted the coexistence of positive and negative emotions and the variety of needs that emerged. Implications for Practice: The findings of the study may help healthcare professionals identify and focus on the psychological needs of parents of infants with biliary atresia, leading them to implement effective coping strategies to increase the caregiving ability of parents. Implications for Research: Future research should explore the effects of supportive interventions for parents of infants with serious chronic illnesses.

show abstract

Quality of Life in Parents of Children With Biliary Atresia

Abstract: Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Cited by 8 publications

References 33 publications

Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study

Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study

Biliary Atresia in Adolescence and Adult Life: Medical, Surgical and Psychological Aspects

Psychological Journey and Coping Styles of Parents of Infants With Biliary Atresia

Contact Info

Product

Resources

About