Medical information concerning an infant's congenital anomaly: Successful communication to support parental adjustment and transition

Fonseca, Ana; Nazaré, Bárbara; Canavarro, Maria Cristina

doi:10.1016/j.dhjo.2015.08.005

Cited by 8 publications

(5 citation statements)

References 28 publications

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“…The initial information that patients and families receive about DSD can set the course for coping and adjustment during the diagnostic process [13, 36]. Given that families may be informed of a possible DSD diagnosis by medical providers who are not specialists in the care of these conditions, it is imperative that online information serves to demystify and destigmatize these conditions so that families’ early distress and confusion do not challenge longer-term values during decision-making.…”

Section: Discussionmentioning

confidence: 99%

Disorders of sex development (DSD) web-based information: quality survey of DSD team websites

Ernst

Chen

Kennedy

et al. 2019

Int J Pediatr Endocrinol

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Objectives Consumers rely on online health information, particularly for unusual conditions. Disorders of Sex Development (DSD) are complex with some aspects of care controversial. Accurate web-based DSD information is essential for decision-making, but the quality has not been rigorously evaluated. The purpose of the present study was to assess the quality of online health information related to DSD presented by 12 pediatric institutions comprising the NIH-sponsored DSD-Translational Research Network (DSD-TRN). Methods DSD-TRN sites identified team webpages, then we identified linked webpages. We also used each institution search engine to search common DSD terms. We assessed webpages using validated tools: the Simple Measure of Gobbledygook (SMOG) determined reading level, the Patient Education Materials Assessment Tool (PEMAT) evaluated content for understandability and actionability, and the DISCERN tool assessed treatment decision-making information (for hormone replacement and surgery). We developed a “Completeness” measure which assessed the presence of information on 25 DSD topics. Results The SMOG reading level of webpages was at or above high-school grade level. Mean (SD) PEMAT understandability score for Team Pages and Team Links was 68% (6%); on average these pages met less than 70% of the understandability criteria. Mean (SD) PEMAT actionability score was 23% (20%); few patient actions were identified. The DISCERN tool determined that the quality of information related to hormone treatment and to surgery was poor. Sites’ webpages covered 12–56% of the items on our Completeness measure. Conclusions Quality of DSD online content was poor, and would be improved by using a variety of strategies, such as simplifying word choice, using visual aids, highlighting actions patients can take and acknowledging areas of uncertainty. For complex conditions such as DSD, high-quality web-based information is essential to empower patients (and caregiver proxies), particularly when aspects of care are controversial.

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Section: Discussionmentioning

confidence: 99%

Disorders of sex development (DSD) web-based information: quality survey of DSD team websites

Ernst

Chen

Kennedy

et al. 2019

Int J Pediatr Endocrinol

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“…In a study of parents of children born with a congenital heart defect, parents experienced the amount of reachable information as overwhelming and asked for easily accessible and reliable information sources via the Internet [34]. Fonseca et al stated that parent’s prior knowledge is important to assess to clarify any potentially incorrect information [35]. …”

Section: Discussionmentioning

confidence: 99%

Parenting stress among parents of children with congenital diaphragmatic hernia

et al. 2017

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PurposeThe aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).MethodsBetween 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children’s Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.ResultsParents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.ConclusionsParental stress in parents of children with CDH seems to increase with the severity of the child’s malformation. Mothers tend to score higher parental stress than fathers.

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“…É importante que os profissionais reconheçam que as informações dadas aos pais interferem no ajustamento destes. No processo de comunicação diagnóstica, pai e mãe devem estar juntos (Fonseca et al, 2016). As mães mencionaram os primeiros dias, após o diagnóstico, como dias difíceis em suas vidas, além de se sentirem responsáveis pela situação de sua criança e da necessidade de entender o significado do diagnóstico e a extensão da deficiência (Taylor et al, 2010).…”

Section: Categoria 1 -O Impacto Familiar Ante O Diagnóstico Da Deficiênciaunclassified

“…O tipo de deficiência, se é progressiva ou não, se física, motora e/ou intelectual, são fatores a serem considerados na adaptação parental (Eddy et al, 2008), bem como o modo como a notícia é dada: de preferência sempre ao casal, com explicações claras das reais condições do filho, sem profecias negativas, abordando as limitações, mas também a funcionalidade possível. Os dias que seguem após essa notícia são de muita dor e sofrimento e terão significativa importância e relevância no ajustamento e na adaptação desses pais à condição de seu filho (Fonseca et al, 2016;Taylor et al, 2010). A dinâmica e a função familiar mudam e o impacto se dá, inclusive, nas finanças da família.…”

Section: Considerações Finaisunclassified

Adaptação parental ao filho com deficiência: revisão sistemática da literatura

et al. 2021

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Quando nasce uma criança com deficiência, é necessária a reidealização do filho para que os pais possam lidar com as suas limitações e atender as suas demandas, resultando em uma adaptação parental adequada ao filho real. O presente artigo objetivou realizar uma revisão sistemática sobre a adaptação parental. Para tanto, investigaram-se as bases de dados Pubmed, BVS, Scopus e Cochrane, utilizando os termos Family adaptation, family impact, disabled children, no período de agosto a setembro de 2017. Foram analisados 21 artigos completos. Os resultados apontam que as famílias com um(a) filho(a) com alguma deficiência enfrentam inúmeros desafios, afetando diretamente a adaptação familiar e as estratégias de enfrentamento. Foram elaboradas três categorias para apresentar os resultados: impacto familiar ante o diagnóstico da deficiência; estados emocionais parentais e consequências sociais; fatores que interferem na adaptação familiar e nas estratégias de enfrentamento. Foi possível concluir que são aspectos centrais na adaptação parental: a) a identificação precoce de fatores positivos e negativos que impactam no processo de reidealização do filho; b) a abordagem interventiva precoce centrada na família, que considere esses fatores objetivando a busca de um enfrentamento focado na resolução de problemas; c) a criação de condições sociais de apoio às famílias.

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Medical information concerning an infant's congenital anomaly: Successful communication to support parental adjustment and transition

Cited by 8 publications

References 28 publications

Disorders of sex development (DSD) web-based information: quality survey of DSD team websites

Disorders of sex development (DSD) web-based information: quality survey of DSD team websites

Parenting stress among parents of children with congenital diaphragmatic hernia

Adaptação parental ao filho com deficiência: revisão sistemática da literatura

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