Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey

Agrawal, Hitesh; Wright, Oriana K.; Carberry, Kathleen E.; Tejtel, S. Kristen Sexson; Mery, Carlos M.; Molossi, Silvana

doi:10.1111/chd.12473

Cited by 6 publications

(9 citation statements)

References 21 publications

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“…124 Parents of children with CHD are interested in joining organisations to meet other parents 103 or using social media sites to enhance their support network. 125 Research has begun to emerge revealing how social media sites such as Facebook can be used to provide social support to individuals during health-related events. 126 Much more research is needed to understand the extent to which social media communities and other organisations support parents of children with CHD and how social risk may affect access to, and utilisation of, these supports.…”

Section: Discussionmentioning

confidence: 99%

“…In the past decade, social networks have been created through organisations and social media 124 . Parents of children with CHD are interested in joining organisations to meet other parents 103 or using social media sites to enhance their support network 125 . Research has begun to emerge revealing how social media sites such as Facebook can be used to provide social support to individuals during health-related events 126 .…”

Section: Discussionmentioning

confidence: 99%

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Parental stress and resilience in CHD: a new frontier for health disparities research

Lisanti

2018

Cardiol Young

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Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child's illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Parental stress and resilience in CHD: a new frontier for health disparities research

Lisanti

2018

Cardiol Young

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“…Agrawal et al have addressed the need for care of in children with congenital coronary anomalies by conducting social media search (6) . On the other hand, Panhuyzen-Goedkoop et al have evaluated the YouTube videos including sudden athlete deaths in order to evaluate the relation between facial expressions and type of syncope (7) .…”

Section: Research Articlementioning

confidence: 99%

“…Reliable videos on cardiovascular diseases are watched in terms of compliance with treatment, screening, or prevention (1)(2)(3)(4)(5)(6) . Since 2007, various results on YouTube's educational content have been reported (1)(2)(3)(4)(5)(6)(7)(8)(9) . As a consequence of these varied findings, researches involving medical YouTube videos decreased by 83% in one year (9)(10)(11) .…”

Section: Introductionmentioning

confidence: 99%

Extra-corporeal Membrane Oxygenation Procedures on YouTube: What Practices Have Being Show

Gencpinar¹,

Bilen²,

Bayrak³

et al. 2019

ejcm

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Objectives: To the our best knowledge, there is no literature on the effectiveness of YouTube on extracorporeal membrane oxygenation (ECMO) practice. In our study, we aimed to evaluate the characteristics and medical aspects of videos on YouTube about ECMO. Materials and Methods: In internet media website YouTube.com search engine; the word ECMO was searched in December 2018 without any filter. The listed first 100 videos were classified according to count of like, dislike, origin of country and types of ECMO. ECMO videos were categorized under three main topics as, educational purpose, patient follow-up and weaning from ECMO. The materials were evaluated in terms of intelligibility using the suitability assessment of materials (SAM). User participation measurements were obtained for each video. Results: In our study, it was observed that the number of videos, content variety and duration of ECMO contents that were uploaded to YouTube after 2016 increased significantly. However, it was found that there was no significant relationship between date and duration of SAM and there was no significant correlation between the duration of the video and the SAM score. However, it was determined that there was a positively weak correlation between the scores of the videos and the number of views. Conclusion: Medical education is forming from didactic education to a system which is problem-based, media and visually aided, and effectively using all of the educational tools. During this period, the use of sites such as YouTube is increasing among medical education sources. Considering that, the discussions may be based on insufficient information quality, patient confidentiality and legal issues. Thus, we think that the necessity of double-blind peer

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“…A compreensão e o compartilhamento de experiências das dificuldades vivenciadas por cuidadores de pessoas em condição de deficiência pode desenvolver processos facilitadores durante o curso da experiência da doença, tanto para o próprio cuidador quanto para a equipe de saúde (45) . Percebeu-se, no presente estudo, a urgência por um apoio específico relacionado com a assistência à puericultura, ou aconselhamento parental sobre os problemas da criança, somando-se ao apoio psicoemocional ou instrumental geral e ao apoio familiar.…”

Section: ) (Participante 04)unclassified

Produção de sentidos parentais no cuidado de crianças com microcefalia por vírus zika

Sá

Andrade

Nogueira

et al. 2017

RBPS

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Jovanka Soares Monteiro Lopes Núcleo de Tratamento e Estimulação Precoce -NUTEP/UFC -Fortaleza (CE) BrasilAntônia Paula Érika Pinheiro Silva Núcleo de Tratamento e Estimulação Precoce -NUTEP/UFC -Fortaleza (CE) Brasil Amanda Maria Veras de Assis Núcleo de Tratamento e Estimulação Precoce -NUTEP/UFC -Fortaleza (CE) Brasil RESUMOObjetivo: Identificar as necessidades parentais quanto ao cuidado para o desenvolvimento de lactentes e crianças com microcefalia causada pelo vírus da Zika (ZIKV). Métodos: Pesquisa qualitativa realizada em um centro de tratamento e estimulação precoce da Universidade Federal do Ceará, em Fortaleza, Brasil, no período de julho de 2016. Participaram do estudo 23 responsáveis, entre pais e familiares, de crianças com diagnóstico de microcefalia causada por Zika, cujos dados foram coletados por meio de grupos focais e analisados através da análise de conteúdo. Resultados: Os participantes relataram a necessidade de maior atenção, compreensão e apoio psicossocial por parte da instituição e dos profissionais envolvidos; mais conhecimento sobre o contexto geral da condição da criança; e intervenções educativas em saúde com acompanhamento continuado (follow-up) voltadas para as reais necessidades das crianças e suas famílias. Conclusão: Evidenciouse nos resultados a ausência e urgência da necessidade do desenvolvimento e implementação de estratégias e ações em saúde que favoreçam a escuta ativa e humanizada das famílias, reduzam o impacto negativo causado pela condição das crianças nas famílias e viabilizem um maior e melhor desenvolvimento de lactentes e crianças com microcefalia causada pelo vírus da Zika.Descritores: Deficiências do desenvolvimento; Pais; Microcefalia; Zika Virus. ABSTRACT Objective: To identify parental needs with respect to the care for the development of infants and children with microcephaly caused by the Zika virus (ZIKV

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Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey

Abstract: There appears to be an unmet need for family support in those affected by AAOCA, a substantial life changing diagnosis for patients and families. Further research is needed to assess quality of life in this population.

Cited by 6 publications

References 21 publications

Parental stress and resilience in CHD: a new frontier for health disparities research

Parental stress and resilience in CHD: a new frontier for health disparities research

Extra-corporeal Membrane Oxygenation Procedures on YouTube: What Practices Have Being Show

Produção de sentidos parentais no cuidado de crianças com microcefalia por vírus zika

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