Feelings of women regarding end-of-life decision making after ultrasound diagnosis of a lethal fetal malformation

Benute, Gláucia Rosana Guerra; Nomura, Roseli Mieko Yamamoto; Liao, Adolfo Wenjaw; Brizot, Maria de Lourdes; Lúcia, Mara Cristina Souza de; Zugaib, Marcelo

doi:10.1016/j.midw.2011.06.011

Cited by 40 publications

(30 citation statements)

References 21 publications

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“…The diagnosis of a severe congenital anomaly and the subsequent decision that parents face is a traumatic event with potentially significant and lasting emotional impact (Benute, et al 2012, Statham et al 2001. The role of the mother as protector of the unborn is strongly embedded in our social and cultural context (Lupton 2011).…”

Section: Introductionmentioning

confidence: 99%

Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents

2016

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Women referred to four fetal medicine centres across two hospital trusts. Analysis: Data analysis was based on the constant comparative approach. Findings: The over-arching theme emerging from the data was that of 'falling through the gap', where the care received did not adequately meet the needs of women and their partners. This was particularly salient at three specific points in the care pathway: enacting the decision to have a termination of pregnancy and subsequent initiation of the process; care during labour and birth, where parents describe being caught in 'no-man's land' between the antenatal and postnatal settings; and post-birth, where parents made sense of and came to terms with their decision. Conclusions: The diagnosis of a severe congenital anomaly and the subsequent pathway that parents face is a traumatic event. Responsibility for the decision to terminate the pregnancy intensifies emotions and adds to the complexity of caring for this group. These findings point to the need for a specific care pathway for parents undergoing this difficult experience.Recommendations include the need for a greater understanding of the views of midwives caring for these parents, review of specific training needs, and examination of processes to better support both parents.

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Section: Introductionmentioning

confidence: 99%

Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents

2016

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“…The value obtained was 0.82, which allowed to conduct factor analysis. According to the author's recommendations, first the value of items whose response were negative was inverted, i.e., items 4,6,7,8,9,10,12,16,17,18,19,21,22, 24 and 26.…”

Section: Methodsmentioning

confidence: 99%

“…(5) The demands of the parent role is even greater with twin children, and in this sense, research indicates that mothers of twins report difficult experiences more frequently, and present higher levels of stress and symptoms of depression. (6)(7)(8) In families with twins, role renegotiation and work reorganization take on particular relevance for the couple, for taking care of two or more children of the same age and with the same needs becomes a taxing job that is almost impossible for one person to accomplish alone. The demands of twin children can bring multiple vulnerabilities and difficulties to the families, on the level of daily management, as well as increasing the family's financial needs and making it challenging to have a social life.…”

Section: Introductionmentioning

confidence: 99%

Identificação dos efeitos dos filhos nas relações familiares

et al. 2014

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Objective: To identify the effects that children have on family relationships and identify the ranking of concerns of parents with and without twin children. Methods: A cross-sectional study was developed with 265 parents with small children, of which 143 had twin children. The instruments used for data collection were: the Family Impact Questionnaire and the Parent Concerns Questionnaire. Results: The most important parenting concerns in both groups were: "Lack of sleep and tiredness"; "Financially providing for the family"; "Increased chores and housework"; "Individual stress about roles and responsibilities." The greatest impact felt by the family was in respect to finances and this value was significantly higher in families with twin children. Conclusion: Nursing professionals must care for the main difficulties perceived by parents by promoting strategies and fostering resource mobilization. ResumoObjetivo: Identificar os efeitos que os filhos têm nas relações familiares e identificar a priorização de preocupações dos pais com e sem filhos gêmeos. Métodos: Estudo transversal com 265 pais com filhos menores, dos quais 143 com filhos gêmeos. Os instrumentos de coleta de dados: escala de impacto familiar de um filho; lista de preocupações parentais. Resultados: As preocupações parentais priorizadas por ambos os grupos de participantes foram: "Falta de horas de sono e cansaço"; "Necessidades econômicas da família"; "Aumento das tarefas domésticas"; "Stresse individual com os papéis e com as responsabilidades". O impacto familiar dos filhos é maior na dimensão financeira, sendo que esse valor é significativamente maior nas famílias com gêmeos. Conclusão: Os profissionais de enfermagem devem atender as principais dificuldades percebidas pelos pais promovendo estratégias e favorecendo a mobilização dos seus recursos.

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“…O momento do parto é um dos momentos mais estressantes e angustiantes para a gestante e os familiares quando existe o diagnóstico de malformação fetal maior 10 . Suassuna 29 afirma que o filho idealizado é perfeito.…”

Section: Momento Do Partounclassified

“…É essencial oferecer o atendimento integral para as gestantes, proporcionando o suporte adequado e nos casos de maior gravidade, a organização do seguimento da gestação e da tomada de decisão 10 . Na ocasião de um diagnóstico de malformação fetal, indica-se a avaliação detalhada das características da doença fetal, incluindo a avaliação do prognóstico fetal e o planejamento do cuidado e seguimento da gestação.…”

Section: Introdução E Históriaunclassified

Cuidados paliativos em medicina fetal

Bolibio

Jesus

Oliveira

et al. 2018

Rev. Med. (São Paulo)

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RESUMO:Malformações fetais acometem cerca de 3% das gestações, e a possibilidade desse diagnóstico é uma das principais preocupações vivenciadas pelos pais e familiares. Quando é diagnosticado uma malformação que implique em possível mortalidade da criança, é necessário o planejamento do seguimento da gestação, o que abrange diversos aspectos que incluem avaliação minuciosa do prognóstico, organização do cuidado após o parto, e seguimento da família de forma abrangente e integrada. Recentemente os conceitos de cuidados paliativos foram introduzidos na perinatologia com essa finalidade, e o presente artigo tem como objetivo discutir o modelo de cuidado paliativo aplicado no atendimento a gestantes e familiares de fetos com malformação.Descritores: Cuidados paliativos; Feto/anormalidades; Perinatologia.ABSTRACT: Fetal malformations affect approximately 3% of pregnancies, and the possibility of this diagnosis is one of the main concerns of parents and family members. When a malformation that implies potential mortality for the child is diagnosed, the pregnancy's follow-up needs to be planned, including diverse aspects such as thorough evaluation of the prognosis, organization of post-partum care, and follow-up with the family in a broad and integrated manner. Recently, palliative care concepts have been introduced into perinatology for this purpose. This article discusses the application of the palliative care model to the care of pregnant women and family members of fetuses with malformations.

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Feelings of women regarding end-of-life decision making after ultrasound diagnosis of a lethal fetal malformation

Cited by 40 publications

References 21 publications

Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents

Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents

Identificação dos efeitos dos filhos nas relações familiares

Cuidados paliativos em medicina fetal

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