Vivências De Mães Que Tiveram  Filhos Com Microcefalia

Oliveira, Mayra Cordeiro; Moreira, Rita de Cássia Rocha; Lima, Maricélia Maia de; Melo, Rosana Oliveira de

doi:10.18471/rbe.v32.26350

Cited by 21 publications

(49 citation statements)

References 6 publications

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“…31 Very often, they seek this support as a way to overcoming, or as a comfort for difficult times. 32 In a study carried out in Teresina/PI, mothers of children with hydrocephalus, after the initial shock, were committed to fighting for the child's survival and well-being, revealing that having a child with hydrocephalus was seen by them as a mission determined by God, and which should not be discussed, but simply accepted, 33 coinciding with the found results.…”

Section: Discussionsupporting

confidence: 53%

“…They were now seeking to live, to enjoy the pleasant moments, to value and support their child in living with the disability. [32][33][34][35][36] In parallel to the challenges, mothers learn to deal with time, trying to live each day at a time, respecting and accepting the limitations of their children, trying not to suffer in advance. Aligned with this result, plans and hope make them believe in a better world for their children.…”

Section: Discussionmentioning

confidence: 99%

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Special child, special mother: the sense of strength in mothers of children with congenital zika virus syndrome

Hamad

Souza

2019

Esc. Anna Nery

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Objectives: To understand the meanings of having a child with the Congenital Zika virus Syndrome in the experience of women and, from this, what they would say to others who find themselves in the same situation. Method: Qualitative and interpretive study, based on the Model of Resilience, Stress, Adjustment and Family Adaptation proposed by McCubbin and McCubbin. 40 mothers from different cities in the state of Paraiba took part in the study. Results: The meanings found were classified in three thematic categories: the divine force that transforms life of the mothers; patience and love, double feelings as a source of overcoming; and the sense of mother’s strength beyond the disease. Conclusion and implication for practice: Caring for a child diagnosed with Congenital Zika virus Syndrome has involved emotional, social, spiritual and economic aspects, as well as a transformation and suffering process. The experiences may contribute to the qualification of healthcare professionals who deal directly with these mothers, and possibly, favor the confrontation and adaptation of them and their families and of the new families that may come to have children with

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Section: Discussionsupporting

confidence: 53%

Section: Discussionmentioning

confidence: 99%

Special child, special mother: the sense of strength in mothers of children with congenital zika virus syndrome

Hamad

Souza

2019

Esc. Anna Nery

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“…29 On the other hand, mothers from Feira de Santana (Brazil), who had children with microcephaly, came across humanized professionals, who presented this qualified listening and understanding of the psychic process experienced and, even in the face of inaccuracies, sought to convey hope and comfort. 30 The way health professionals transmitted the suspicion or confirmation on the diagnosis became remarkable in the memory of the interviewed mothers, who were able to describe the moment with rich details in their speeches. When the news does not happen properly, the suffering of mothers and family members increases, making the child's acceptance difficult.…”

Section: Discussionmentioning

confidence: 99%

“…When the news does not happen properly, the suffering of mothers and family members increases, making the child's acceptance difficult. 30 The welcoming way, clarity of speech, with understandable and practical information, can minimize the impact caused by the diagnosis, with restoring confidence in the follow-up of the disease. 27 Thus, there should be a planning about how the diagnosis will be provided, aiming to support and clarify any doubts that may arise about the disease.…”

Section: Discussionmentioning

confidence: 99%

“…Acceptance and adaptation can be defined based on the sensitivity of the health professional who addresses the diagnosis, as well as all the multi-professional support at all stages, making it essential for empowerment and family balance. 30 In this context, the multidisciplinary team, with emphasis on nursing, can play a more active role in the availability of clear information and in the recognition of the social support network accessible to the mother and her family members to improve the quality of life and the understanding of these mothers about CZVS, providing increased trust between them and professionals, the strengthening 11/14 of the bond between mother and child, the approach of the couple and the encouragement for a positive confrontation.…”

Section: Discussionmentioning

confidence: 99%

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Congenital Zika Virus Syndrome: Knowledge and How to Communicate the Diagnosis

Hamad

Souza

2020

Texto contexto - enferm.

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Objective: to know how mothers affected by the Zika virus during pregnancy became aware on the diagnosis of Congenital Zika Virus Syndrome in their child and to understand the way in which the communication of the diagnosis was transmitted. Method: a qualitative approach study, with interpretative research, based on the Resilience, Stress, Adjustment and Family Adaptation Model. The research was conducted in a Specialized Rehabilitation Center in a city of Paraíba (Brazil), from June to November 2017, with 40 mothers of children with congenital Zika virus syndrome. The empirical material was produced from a semi-structured script developed by the researcher, related to the different phases and components of the adaptation and resilience process. The findings were submitted to content analysis. Results: two thematic categories were unveiled: The discovery of Congenital Zika Virus Syndrome: period of diagnosis and maternal expectations, and How to communicate the diagnosis: implications for the discovery of Congenital Zika Virus Syndrome. Conclusion: Communication of the diagnosis and professional conduct at the time of information play important roles in re-signifying the meaning of congenital malformation. The interaction established by the health professional and their posture are directly related to the satisfaction about the information received.

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The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID‐19 pandemic

de Lima Nascimento Coutinho,

Feldner,

Coelho

et al. 2023

Health Expectations

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IntroductionIn Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID‐19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations.AimTo explore the daily lives of children with CZS during the COVID‐19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results.MethodsIn this participatory action research, seven young Brazilian mothers acted as co‐researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers.ResultsContent analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID‐19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments.ConclusionThe photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID‐19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health.Patient/Public ContributionConsistent with a participatory action research framework, Mothers acted as co‐researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.

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Vivências De Mães Que Tiveram Filhos Com Microcefalia

Cited by 21 publications

References 6 publications

Special child, special mother: the sense of strength in mothers of children with congenital zika virus syndrome

Special child, special mother: the sense of strength in mothers of children with congenital zika virus syndrome

Congenital Zika Virus Syndrome: Knowledge and How to Communicate the Diagnosis

The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID‐19 pandemic

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