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Children with special health needs and family: implications for Nursing
Sarah Vieira Figueiredo1, Ana Carla Carvalho de Sousa2, Ilvana Lima Verde Gomes1
1Programa de Pós-Graduação em Saúde Coletiva, Universidade Estadual do Ceará, Fortaleza, CE, Brasil.
Insights
Caring for children with myelomeningocele presents families with initial fear and ongoing daily challenges. Nursing support is crucial for managing this chronic illness and improving quality of life.
Area of Science:
- Pediatric Nursing
- Chronic Illness Management
- Family-Centered Care
Background:
- Myelomeningocele presents lifelong challenges for affected children and their families.
- Understanding the family experience is vital for effective care.
- Early diagnosis and ongoing management impact daily life significantly.
Purpose of the Study:
- To explore the family experience of children and adolescents diagnosed with myelomeningocele.
- To investigate the impact of chronic illness discovery on family dynamics.
- To understand the daily care challenges faced by families.
Main Methods:
- Qualitative study conducted in a pediatric hospital.
- Data collected through interviews with families.
- Thematic analysis used for data interpretation.
Main Results:
- Diagnosis post-birth induced fear and anguish due to the unknown.
- Families encountered numerous daily care challenges stemming from disease sequelae.
- Adaptation to the chronic condition evolved over time.
Conclusions:
- Nursing interventions are essential for providing emotional support and guidance.
- Integration into the healthcare network enhances family coping mechanisms.
- Nurses play a pivotal role in supporting children, adolescents, and their families.
Objective:
to understand the family experience of children and adolescents with myelomeningocele by the discovery of chronic illness and their daily life in the realization of needed care to these people.
Method:
qualitative study, developed from October 2013 to February 2014, with family, in a pediatric hospital in Fortaleza. Data were collected through interviews and checked by analysis thematic category.
Results:
it was found that the diagnosis after the birth of the child caused fear and anguish to the families in front of the unknown and the unexpected and that over the years they started to deal with many challenges conducting the daily care due to the disease sequelae.
Conclusion:
nursing plays an important role in the lives of families, children and adolescents, through emotional support, guidelines and care inserted in the health care network.
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