[Therapeutic itinerary of children with microcephaly due to the Zika virus]

Area of Science:

• Neuroscience
• Public Health
• Epidemiology

Background:

• The 2015 Zika virus epidemic in Brazil led to a surge in microcephaly cases.
• Microcephaly presents complex challenges for affected children and their families, necessitating extensive medical care.
• Understanding the parental journey in seeking treatment is crucial for improving healthcare support systems.

Purpose of the Study:

• To investigate the therapeutic itineraries of parents and caregivers of children with microcephaly linked to Zika virus infection.
• To identify the healthcare sectors and information sources utilized by families during their treatment-seeking process.
• To analyze the challenges and facilitators encountered in accessing care within the healthcare network.

Main Methods:

• Qualitative research design employing semi-structured interviews.
• Conducted between April 2017 and February 2018 at a Reference Center on Neurodevelopment.
• Content analysis of 20 interviews with parents/caregivers of children with microcephaly due to Zika virus.

Main Results:

• Parents experienced significant disorientation and uncertainty when seeking care within the health sector.
• The professional and informal sectors (including media and social networks) were key sources of information and support.
• Information from media and social networks helped clarify microcephaly and Zika virus, aiding the treatment search.
• Accessing care within the healthcare network proved difficult, making the path from diagnosis to treatment arduous.

Conclusions:

• The healthcare journey for families affected by Zika-related microcephaly is complex and fraught with challenges.
• The informal sector, particularly media and social networks, plays a vital role in information dissemination and support.
• Improvements are needed in the healthcare system to provide a more streamlined and supportive experience for families navigating this emergency situation.