Families' knowledge about children and adolescents with neural malformation about their rights in health

Gomes, Ilvana Lima Verde; Queiroz, Maria Veraci Oliveira; Mota, Déborah Danna da Silveira; Sousa, Ana Carla Carvalho de; Vasconcelos, Cristiany Macêdo Peixoto

doi:10.5935/1414-8145.20150090

Cited by 7 publications

(8 citation statements)

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“…Another study pointed out that the information acquired by family members of children with special health needs came from informal guidance networks or came from relatives, friends, virtual social networks and the internet. This is a worrying situation in view of the precariousness of these data, which do not have adequate scientific background (22) . Although the information acquired in the virtual environment represents a widely disseminated data source in society, with free and free content that can support families of chronically ill children, the quality of this information is questionable.…”

Section: Discussionmentioning

confidence: 99%

Importance of health guidance for family members of children with sickle cell disease

et al. 2018

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Objective: To know the main health guidance needs of family members of children with sickle cell disease. Method: Qualitative research, developed in a pediatric reference hospital of Ceará State, between April and May 2017, through the participation of 12 family members of children with sickle cell disease. The data were collected through semi-structured interviewees and analyzed according to the Bardin’s Thematic Categorical Analysis. Results: The relatives had divergent opinions about what this pathology would be and expressed the expectation of being broadly guided, from general information (signs and symptoms) to more complex ones about the disease, including major complications and ways of preventing them. Final considerations: The health fragility due to the punctual and/or meager guidance provided to family members reflects the importance of increasing knowledge and clarifying doubts of these relatives about the disease, which makes it urgent to develop health education strategies by multiprofessional teams.

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Section: Discussionmentioning

confidence: 99%

Importance of health guidance for family members of children with sickle cell disease

et al. 2018

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“…Aquelas parecem ser incansáveis perante o itinerário diário de cuidados, apesar do sofrimento provocado pela luta rotineira. Assim, as famílias buscam apoio e conhecimento para lutar pelos direitos da criança, de tal forma que tais forças transcendem o benefício financeiro e passam por aspectos judiciais, de educação e de assistência à saúde 31,32 .…”

Section: Discussionunclassified

“A luta é nossa”: vivência de cuidadoras de crianças com síndrome congênita do Zika

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Collet

Vaz

et al. 2022

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Objetivou-se analisar a vivência de cuidadores de crianças com a síndrome congênita do Zika, no contexto familiar e social. Trata-se de um estudo qualitativo com dez cuidadoras de crianças com síndrome congênita do Zika vírus, em um serviço pernambucano de referência à criança com deficiência, realizado no período de novembro de 2018 a março de 2019. Os dados foram coletados por meio de entrevista semiestruturada e interpretados pela análise temática. As cuidadoras, principalmente mães, dedicam-se integralmente aos cuidados do filho com a síndrome; enfrentam lutas diárias em busca de melhores condições de vida; abdicam de sonhos, emprego e estudos; e enfrentam dificuldades financeiras e no cuidado a outros filhos. Assim, são necessárias ações de saúde focadas na singularidade das famílias para viabilizar a oferta e/ou fortalecimento de redes de apoio e ampliar as possibilidades para melhores condições de vida das mulheres e de seus filhos com a síndrome.

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“…They seem to be relentless in the face of the daily care itinerary, despite the suffering caused by the routine struggle. Thus, the families seek support and knowledge to fight for the child's rights in such a way that these forces transcend the financial benefit and go through judicial, educational, and health care aspects 31,32 .…”

Section: Discussionmentioning

confidence: 99%

“The fight is ours”: the experience of caregivers of children with congenital zika syndrome

Junqueira

Collet

Vaz

et al. 2022

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The study analyzed the experience of caregivers of children with congenital zika syndrome, both in family and social context. It is a qualitative study with ten caregivers of children with congenital zika virus syndrome, in a Pernambuco referral service for children with disabilities, from November 2018 to March 2019. Data were collected through semistructured interviews and interpreted by thematic analysis. Caregivers, especially mothers, dedicate themselves entirely to their syndromic children’s care, facing daily struggles in search of better living conditions, abandoning dreams, jobs, studies and facing financial difficulties as well as for the care of other children. Thus, health actions focused on the uniqueness of families are necessary to enable the offer and / or strengthening of support networks as well as to expand the possibilities for better living conditions for both women and their children with the syndrome.

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Families' knowledge about children and adolescents with neural malformation about their rights in health

Cited by 7 publications

References 0 publications

Importance of health guidance for family members of children with sickle cell disease

Importance of health guidance for family members of children with sickle cell disease

“A luta é nossa”: vivência de cuidadoras de crianças com síndrome congênita do Zika

“The fight is ours”: the experience of caregivers of children with congenital zika syndrome

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