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Dev Med Child Neurol February 2024 PMID 37482918

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study.

Domingo Palacios-Ceña, Javier Güeita-Rodríguez, Antonio Gil-Nagel, Carmen Jimenez-Antona, Cristina García-Bravo, Juan Francisco Velarde-García, Juan Nicolas Cuenca-Zaldivar, Ángel Aledo-Serrano

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Mentions

26
Peak: 13 in Jul 2023
across 2 sources since Jul 2023

Extended reach

38,504
potential audience

Total likes

46

Video views

249

Mentions per month

Jul 2023 – Apr 2024

Where it's discussed

  • X / Twitter24 posts
  • YouTube2 videos

AI synopsis

What people are saying

The overall discussions convey strong interest and recognition of the study's relevance, evidenced by emotional expressions like fear of nocturnal seizures and quotes about poor emergency care, as well as references to the article’s key themes and related research, which demonstrate active engagement and belief in the potential impact of these findings.

AgreementModerate agreement

Most discussions acknowledge the significance of the research, especially highlighting issues like lack of emergency department knowledge and the emotional toll on parents.

InterestHigh interest

The posts show high engagement and curiosity, frequently referencing the article and related studies, indicating strong interest in the topic.

EngagementModerate engagement

Comments reflect some deep engagement, with users sharing emotional reactions and emphasizing healthcare gaps, though some posts are more informational or promotional.

ImpactModerate impact

The discussions suggest this research could influence healthcare practices and policy changes, as users recognize its importance for improving emergency care and parent support.

Abstract in brief

  • This study explores the experiences and unmet medical needs of parents caring for children aged 4-10 with genetic developmental and epileptic encephalopathies (DEEs) caused by specific gene variants.
  • Three main themes emerged: managing unpredictable seizures and related symptoms; struggles with treatment decisions and medication management; and challenges in the healthcare relationship, especially with emergency department professionals.
  • The findings highlight the importance of improving emergency care knowledge about DEEs, fostering better relationships between healthcare providers and parents, and using caregiver insights to guide clinical trials and targeted therapies.]
Read the full abstract

Top posts

Most liked on X and Bluesky
Ángel Aledo-Serrano
@AledoNeuro · X

The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 33 likes · 10 shares · 6,747 followers View post →
Mac Keith Press
@mackeithpress · X

#DMCNpodcast Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies #DevelopmentalandEpilepticEncephalopathy #Epilepsy Available in Portuguese

Aug 29, 2023 · 4 likes · 2 shares · 2,054 followers View post →
Mac Keith Press
@mackeithpress · X

The main problem many parents of children with #genetic #DevelopmentalAndEpilepticEncephalopathy face is the lack of knowledge among professionals at the emergency department @AledoNeuro https://t.co/CyVQOsoW78

Jan 16, 2024 · 3 likes · 3 shares · 2,054 followers View post →
Neuropediatrics®
@PedNeurol · X

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study https://t.co/j3vmeUUGTD

Jul 30, 2023 · 1 like · 288 followers View post →
Juan Francisco
@JuanFran7381 · X

Health care concerns in parents of children with genetic DEEs | Palacios... https://t.co/GZjXiKnvQE a través de @YouTube

Jan 25, 2024 · 1 like · 1 share · 116 followers View post →
HumQRinHS
@Hum_QRinHS · X

I'm terrified that the seizures are nocturnal, I'm terrified, my biggest fear is that she won't wake up. That I will be so exhausted, that I won't notice, and she will choke or I will be late rescuing her or I won't know how long she has been in that state https://t.co/yzo48zTk3g https://t.co/bqT2Wk68Hs

Apr 18, 2024 · 1 like · 51 followers View post →

All mentions

HumQRinHS
@Hum_QRinHS · X

I'm terrified that the seizures are nocturnal, I'm terrified, my biggest fear is that she won't wake up. That I will be so exhausted, that I won't notice, and she will choke or I will be late rescuing her or I won't know how long she has been in that state https://t.co/yzo48zTk3g https://t.co/bqT2Wk68Hs

Apr 18, 2024 · 1 like · 51 followers View post →
Neuropediatrics®
@PedNeurol · X

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study https://t.co/j3vmeUUGTD

Feb 8, 2024 · 288 followers View post →
EUE CRE Madrid (UAM)
@EUECREM_UAM · X

RT @JuanFran7381: Health care concerns in parents of children with genetic DEEs | Palacios... https://t.co/GZjXiKnvQE a través de @YouTube

Jan 26, 2024 · 1 share · 773 followers View post →
Juan Francisco
@JuanFran7381 · X

Health care concerns in parents of children with genetic DEEs | Palacios... https://t.co/GZjXiKnvQE a través de @YouTube

Jan 25, 2024 · 1 like · 1 share · 116 followers View post →
Mac Keith Press
@mackeithpress · X

The main problem many parents of children with #genetic #DevelopmentalAndEpilepticEncephalopathy face is the lack of knowledge among professionals at the emergency department @AledoNeuro https://t.co/CyVQOsoW78

Jan 16, 2024 · 3 likes · 3 shares · 2,054 followers View post →
Javier Güeita
@GueitaJ · X

RT @Hum_QRinHS: Video #podcast of one of our latest #qualitative #research in Health. Health care concerns in parents of children with gen…

Oct 28, 2023 · 1 share · 705 followers View post →
HumQRinHS
@Hum_QRinHS · X

Video #podcast of one of our latest #qualitative #research in Health. Health care concerns in parents of children with genetic DEEs | Palacios... https://t.co/FZOtctnU0d @mackeithpress @inves_urjc @URJCcientifica

Oct 28, 2023 · 1 share · 51 followers View post →
HumQRinHS
@Hum_QRinHS · X

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A #qualitative #study - Palacios‐Ceña - Developmental Medicine & Child Neurology - Wiley Online Library https://t.co/rQBJc6F0jG #Hum_QRinHS @URJCcientifica

Sep 14, 2023 · 1 like · 51 followers View post →
Mario Cortina Borja
@cortina_borja · X

RT @mackeithpress: #DMCNpodcast Health care concerns in parents of children with different genetic developmental and epileptic encephalopa…

Aug 31, 2023 · 2 shares · 2,524 followers View post →
Bernard Dan
@ProfBernardDan · X

RT @mackeithpress: #DMCNpodcast Health care concerns in parents of children with different genetic developmental and epileptic encephalopa…

Aug 31, 2023 · 2 shares · 1,713 followers View post →
Mac Keith Press
@mackeithpress · X

#DMCNpodcast Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies #DevelopmentalandEpilepticEncephalopathy #Epilepsy Available in Portuguese

Aug 29, 2023 · 4 likes · 2 shares · 2,054 followers View post →
Neuropediatrics®
@PedNeurol · X

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study https://t.co/j3vmeUUGTD

Jul 30, 2023 · 1 like · 288 followers View post →
Ped Neurology Briefs
@PedNeurBriefs · X

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study https://t.co/mRPaVOymCn

Jul 24, 2023 · 4,047 followers View post →
Javier Güeita
@GueitaJ · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 23, 2023 · 10 shares · 705 followers View post →
Francisco Urrutia
@ultrichwolf · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 23, 2023 · 10 shares · 308 followers View post →
Amparito
@amparito_ma · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 142 followers View post →
Víctor G Mayordomo
@vicmayordomo · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 1,266 followers View post →
Andres Jimenez-Gomez MD
@dretico · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 944 followers View post →
Renee Wendland
@ReneeWendland1 · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 16 followers View post →
The Notorious EEG (M. Scott Perry MD)
@TheNotoriousEEG · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 10,366 followers View post →
Allan Bayat, associated professor
@AllanBayat · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 1,012 followers View post →
Borja Cabal-Paz
@BorjaCabal · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 1,149 followers View post →
Instituto Neurociencias Madrid
@INeuroMadrid · X

RT @AledoNeuro: The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 10 shares · 640 followers View post →
Ángel Aledo-Serrano
@AledoNeuro · X

The new paper of our group @SynaptiaMadrid is out

Jul 22, 2023 · 33 likes · 10 shares · 6,747 followers View post →