From the dream to reality: experience of mothers of children with disabilities

Guerra, Camilla de Sena; Dias, Maria Djair; Filha, Maria de Oliveira Ferreira; Andrade, Fábia Barbosa de; Reichert, Altamira Pereira da Silva; Araújo, Verbena Santos

doi:10.1590/0104-07072015000992014

Cited by 20 publications

(23 citation statements)

References 10 publications

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“…Receiving a diagnosis of fetal malformation is a difficult moment for the whole family, often causing shock, fear, and denial . The earlier the diagnosis, the less likely the risk of irreparable damage to the mother–baby relationship since there is more time for a woman and her family to adapt to the new reality . In the present study, many women were diagnosed at an advanced stage of pregnancy or even during birth, which heightened the shock of receiving the news.…”

Section: Discussionmentioning

confidence: 72%

How do mothers feel? Life with children with congenital Zika syndrome

Freitas

Soares

Mocelin

et al. 2020

Intl J Gynecology & Obste

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Objective: To describe the repercussions, from the perspectives of caregiver mothers, of confirmed congenital Zika syndrome (CZS) in their offspring. Methods:A descriptive-exploratory study with a qualitative approach was carried out in the state of Espírito Santo in southeastern Brazil, with 25 women who had a child diagnosed with CZS.Results: Emerging themes from the content analysis were grouped into two categories:(1) inequalities experienced by mothers, including social inequality, poverty, and gender inequality; (2) the impact of a child with CZS on mothering, including feelings at the time of diagnosis, maternal isolation and mental health, experiences of stigma and prejudice, and exhausting itineraries searching for therapeutic care. Conclusion:The repercussions of CZS were a huge burden on already vulnerable women, and social inequalities and poverty were important markers in the mothers' reports.Many of the families affected by CZS already lived in precarious social conditions and these conditions were exacerbated further. Robust public and social policies to support these mothers need effective implementation given that babies born with CZS need long-term care and support.

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Section: Discussionmentioning

confidence: 72%

How do mothers feel? Life with children with congenital Zika syndrome

Freitas

Soares

Mocelin

et al. 2020

Intl J Gynecology & Obste

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“…In the midst of so much pain, denial and suffering, mothers often show a great degree of overcoming and strengthening of resilience, through which these women raise self-esteem and regain autonomy, either through professional support groups, from family or through spirituality. The feeling of spirituality exposed by the mothers in this study is based on the belief of a higher power capable of overcoming all challenges; it is a form of parental coping in face of specific and chronically stressful situations, such as a congenital malformation (14)(15) .…”

Section: Discussionmentioning

confidence: 99%

Challenges and perspectives of mothers of children with microcephaly due to Zika virus infection

et al. 2018

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Objective: to understand the challenges and perspectives of mothers of children with microcephaly due to Zika virus infection. Methods: qualitative study carried out with twelve mothers of children with microcephaly due to Zika virus at a pediatric public hospital. Data were collected through a semi-structured interview and submitted to content analysis. Results: the speeches revealed the mothers were mostly unaware of the occurrence of Zika virus infection in pregnancy, and the moment of diagnosis was characterized by surprise and suffering, despite the observed overcoming. Many of them did not know the meaning of microcephaly and did not know what changes and limitations their children might have. In describing the difficulties in caring for the child, mothers attached to spirituality as a form of coping. Conclusion: microcephaly brought a new reality to the investigated women, who sometimes denied their own reality, demonstrating in the speeches many challenges and few perspectives. Descriptors: Zika Virus; Mothers; Microcephaly; Child. Objetivo: compreender desafios e perspectivas de mães de crianças com microcefalia pelo vírus Zika. Métodos: estudo qualitativo, realizado com doze mães de crianças com microcefalia pelo vírus Zika, em hospital público pediátrico. Dados coletados por meio de entrevista semiestruturada, os quais foram submetidos à análise de conteúdo. Resultados: de acordo com as falas, as mães, em maioria, desconheciam a ocorrência de vírus Zika na gestação, sendo o momento do diagnóstico caracterizado por surpresa e sofrimento, apesar da superação observada. Muitas delas não sabiam o significado de microcefalia, bem como desconheciam as alterações e limitações que as crianças poderiam apresentar. Ao descrever as dificuldades no cuidado com o filho, revelaram que usavam a espiritualidade como forma de enfrentamento. Conclusão: a microcefalia trouxe, de tal forma, nova realidade para as mulheres investigadas, que, por vezes, negavam a própria realidade, demonstrando, nas falas, muitos desafios e poucas perspectivas.

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“…The mother's role in the family setting tends to be that of providing comprehensive care and sparing no efforts to ensure the best for their children, especially when they present some disability [14].…”

Section: Discussionmentioning

confidence: 99%

The Reality of Children and Adolescents with Meningomyelocele and Their Families, in the City of Belo Horizonte and Its Metropolitan Area, Brazil

Freitas¹,

Sena²,

Silva³

et al. 2016

Health

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Meningomyelocele is a congenital defect involving the central nervous system which is one of the most common among those compatible with life. Children affected by this condition present neurological, orthopedic, renal and urogenital complications, needing lifelong healthcare provisions. The aim of this study was to analyze the reality experienced by children and adolescents with meningomyelocele and their families in the city of Belo Horizonte and its metropolitan area, Brazil. A descriptive and exploratory study was conducted via three home visits and a scripted interview with 16 children and adolescents with meningomyelocele and their families. It was observed that mean age of children and adolescents was 12 years old, most of them did not walk (n = 10), and depended on wheel chairs and parental care. Mothers represented the main caregivers and most (n = 12) had to leave their formal work outside of the home, compromising family income. It concluded that the families had socioeconomic levels aggravated by difficulties in purchasing materials needed for their children's care. Some social challenges included barriers to education and the acquisition of medications and materials, demonstrating the need for planning public policies aimed at integrating different health services. G. L. de Freitas et al.560

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From the dream to reality: experience of mothers of children with disabilities

Cited by 20 publications

References 10 publications

How do mothers feel? Life with children with congenital Zika syndrome

How do mothers feel? Life with children with congenital Zika syndrome

Challenges and perspectives of mothers of children with microcephaly due to Zika virus infection

The Reality of Children and Adolescents with Meningomyelocele and Their Families, in the City of Belo Horizonte and Its Metropolitan Area, Brazil

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