The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey

Jacobs, Robyn; Boyd, Leanne; Brennan, Kirsty; Sinha, Chandrava; Giuliani, Stefano

doi:10.1016/j.jpedsurg.2016.07.008

Cited by 73 publications

(56 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…3 The early initiation of breastfeeding, within one hour of birth, has important effects on survival that are independent of the duration of exclusive breastfeeding, 4 and that may well be explained at least in part by its effects on gene activation and on the oral and gut microbiome. Regarding the latter, we are only starting to understand how the microbiome of breastfeed infants may affect their immune and neurological systems, the latter through pathways that include serotonin, cytokines and bacteria-produced metabolites.…”

Section: Breastfeeding As a Biological Dialoguementioning

confidence: 99%

“…Parents also wish to share information about their children on social media when they have chronic or orphan diseases because social media networks have become a platform to share their experiences. 3 Such phenomenon has been identified as sharenting (from share and parenting), and is defined as the practice of regularly posting and disclosing details about their children on social media. 4 But parents do not realize that these pictures and comments may eventually be seen by anyone given the massive nature of these media.…”

mentioning

confidence: 99%

See 1 more Smart Citation

Sharenting… should children’s lives be disclosed on social media?

Otero

2017

Arch Argent Pediat

View full text Add to dashboard Cite

show abstract

Section: Breastfeeding As a Biological Dialoguementioning

confidence: 99%

mentioning

confidence: 99%

Sharenting… should children’s lives be disclosed on social media?

Otero

2017

Arch Argent Pediat

View full text Add to dashboard Cite

show abstract

“…Um estudo recente publicado no Jornal de Cirurgia Pediátrica avaliou a importância das mídias sociais para pacientes e familiares portadores de anomalias congênitas. Quando indagados se gostariam de participar de um grupo de Facebook ligado ao hospital no qual recebiam assistência, e ser diretamente assistidos por um profissional da área da saúde de forma online, 83% dos participantes responderam sim (21) . O diagnóstico pré-natal de pé torto tem repercussões sobre a mãe e sobre o estado psicológico da família e, em alguns casos, pode modificar o curso da gravidez.…”

Section: O Esclarecimentounclassified

Congenital clubfoot: parents’ considerations about the disease and its treatment

et al. 2018

View full text Add to dashboard Cite

RESUMOObjetivos: Conhecer quais as impressões dos pais em relação ao diagnóstico do pé torto congênito e seu tratamento. Essas informações podem favorecer a persistência ao tratamento, quebra de tabus e sucesso terapêutico. Métodos: Estudo qualitativo e descritivo com 10 pais cujos filhos são portadores de pé torto congênito. A tabulação dos dados ocorreu por meio da utilização de três figuras metodológicas: ideia central, expressões-chaves e o discurso sujeito coletivo. Resultados: Quando indagados sobre a impressão gerada quando o filho foi diagnosticado com pé torto congênito, 70% referiram sentimento de tristeza, susto e preocupação, sendo que apenas 30% demonstraram uma aceitação tranquila do diagnóstico, desprovida de medo e preocupação. Quando indagados em relação ao tratamento que estava sendo feito, 100% dos pais demonstraram otimismo e satisfação com os resultados apresentados; ainda, 40% opinaram em relação ao nível de conforto trazido pelos métodos terapêuticos, e 20% citaram a importância do envolvimento de toda a equipe da saúde na abordagem terapêutica. Conclusão: Medo e preocupação foram sentimentos frequentemente apresentados, que melhoravam com a melhor elucidação por parte da equipe de saúde em relação a doença. Em relação à terapêutica, a grande satisfação por parte dos pais foi unânime. Nível de Evidência V; Opinião de Especialista.Descritores: Pé torto; Bioética; Doenças do pé; Saúde da criança; Saúde materna. ABSTRACTObjectives: To learn parents' impressions regarding the diagnosis of congenital clubfoot and its treatment. This information may favor persistence with treatment, breakdown of taboos and therapeutic success. Methods: A qualitative and descriptive study with 10 parents whose children have congenital clubfoot. The tabulation of the data occurred through the use of three methodological figures: central idea, key expressions and collective subject discourse. Results: When asked about impressions generated when their child was diagnosed with congenital clubfoot, 70% reported feelings of sadness, fright and worry, and only 30% showed a calm acceptance of the diagnosis, devoid of fear and worry. When asked about the treatment that was being done, 100% of the parents showed optimism and satisfaction with the results presented, 40% mentioned the comfort level brought by the therapeutic methods and 20% mentioned the importance of the involvement of the entire health team in the therapeutic approach. Conclusion: Fear and concern were common feelings, which improved with the best elucidation by the health team regarding the disease. Regarding therapy, the parents' satisfaction was unanimous. Level of Evidence V; Expert Opinion.

show abstract

“…In fact, Facebook ® allows the exchange of information and experiences among patients, especially those with rare diseases. This exchange creates valuable relationships that support and empower patients, in a way that was impossible before the social media era [16].…”

Section: Introductionmentioning

confidence: 99%