Abstract:

This article aims to discuss the impacts of the promotion of families’ mental health following the diagnosis of Zika virus infection in the pregnant woman and/or congenital Zika virus syndrome (CZVS) in the infant. The study also aims to foster reflection on mother-infant bonding in this context. The study is relevant not only because there is still so much to learn about CZVS, with its enormous capacity for dispersion and many doubts as to the physical consequences and psychological impacts, but also due to the urgent need to provide families and/or caregivers with guidelines for care and alternatives for dealing with the illness. The study was conducted in an outpatient clinic specifically providing care to children with CZVS at the Unit for Infectious Diseases in Pediatrics in a tertiary hospital of the Brazilian Unified National Health System (SUS) in Rio de Janeiro, Brazil. The team is multidisciplinary, and each member conducts an assessment based on their specific field of knowledge. This qualitative study drew on participant observation, and the data analysis showed that the use of virtual social networks, which function (independently of the medicine approaches) as channels for communication and collective discussion of the different experiences, in order to share strategies to overcome the diagnosed impossibilities.

Keywords:
Zika Virus; Mental Health; Infant; Family Relations

Introduction

The description of a new and serious congenital infection, the congenital Zika virus syndrome (CZVS), in Brazil in late 2015 triggered large mobilization of the technical and scientific apparatus, society, and the media. The unprecedented nature of the disease raised doubts and expectations in the population. Fear and anxiety became part of the daily lives of pregnant women and their families.

Based on the notion of comprehensiveness in the principles of the Brazilian Unified National Health System (SUS), there was a need to respond to this suffering by adopting measures for the promotion of the families’ mental health. Thus, the concept of Mental Health used in the study is linked to the vision of the human being, and as discussed by Dimenstein ¹1. Dimenstein MDB. O psicólogo nas Unidades Básicas de Saúde: desafios para a formação e atuação profissionais. Estud Psicol (Natal) 1998; 3:53-81., it is possible to view the individual as a whole, acknowledging and respecting biopsychosocial aspects. Thus, understanding the suffering triggered by the illness in the patients and their families contributes to care and attention for them in health services ²2. Ministério da Saúde. Apoio psicossocial a mulheres gestantes, famílias e cuidadores de crianças com síndrome congênita por vírus zika e outras deficiências: guia de práticas para profissionais e equipe de saúde. Brasília: Ministério da Saúde; 2017..

In this setting, the study is relevant not only because so much still remains to be learned about CZVS, with its enormous capacity for dispersion and many doubts as to the physical consequences and psychological impacts, but also due to the urgent need to provide families and/or caregivers with guidelines for care and alternatives for dealing with the illness. Thus, an attentive ear to the complaints, fears, anxieties, and doubts generated by CZVS should be emphasized in the work by mental health professionals, expanding their view beyond the concern over the physical illness per se. Bezerra Júnior ³3. Bezerra Júnior B. Considerações sobre terapêuticas ambulatoriais em saúde mental. In: Tundis SA, Costa NR, organizadores. Cidadania e loucura: políticas de saúde mental no Brasil. Petrópolis: Editora Vozes; 1992. p. 134-69. (p. 154) thus states that “there is a hidden meaning in the symptom, and treating means to unveil this hidden reason of the illness and thus allow patients to find more adequate solutions to their conflicts”.

Further, given the lack of an available cure for CZVS, a chronic health condition sets in, as defined by Barsaglini ⁴4. Barsaglini RA. Adoecimentos crônicos, condições crônicas, sofrimentos e fragilidades sociais: algumas reflexões. In: Canesqui AM, organizador. Adoecimentos e sofrimentos de longa duração. São Paulo: Editora Hucitec; 2013. p. 70-103.. From this perspective, chronic illnesses can bring psychological and social consequences, since the continuous need for care and periodic visits to health services tend to disrupt the family’s routine and require learning to live with the condition.

In light of the above, the article aims to discuss the impacts of the promotion of families’ mental health following diagnosis of Zika virus infection in the pregnant woman and/or presence of CZVS in the infant.

Method

The qualitative study was based on participant observation, a technique which according to Haguette ⁵5. Haguette TMF. Metodologias qualitativas na Sociologia. Petrópolis: Editora Vozes; 1995. seeks the meanings (more than the appearances) of human actions.

The study was conducted in an outpatient clinic specifically caring for children with CZVS at the Unit for Infectious Diseases in Pediatrics at a tertiary hospital of the SUS in Rio de Janeiro, Brazil. The team is multidisciplinary, and each member conducts an assessment based on their specific field of knowledge.

Thus, from April to July 2016, the clinic received 20 families with infants ranging from two to eight months of age (12 females and eight males). Nine of the mothers were accompanied by the infants’ fathers, ten came with other relatives (their mothers, aunts, or sisters) or friends, and one mother came to the appointment alone with her infant. Of these families, ten participated once, three had two appointments, another three had three meetings, and four families attended more than four team consultations.

Importantly, some of the families included in this study had already been interviewed by television, radio, and newspapers on how they deal with the adverse impacts of CZVS. Some of these families are known throughout their communities, and their children are known as “the children of Zika”, so great is the media exposure caused by the epidemic, as reported previously by Diniz ⁶6. Diniz D. Vírus Zika e mulheres. Cad Saúde Pública 2016; 32:e00046316..

Data on mental health were collected during the visits, recorded in a field diary, and linked to the collaborative consultations with other health professionals. The conversations during visits also allowed families to connect to significant areas of their own experiences, which Fernando Rey ⁷7. Rey FG. Pesquisa qualitativa e subjetividade. São Paulo: Thomson Pioneira; 2005. has defined as “Conversational Dynamics”, allowing the expression of subjects’ needs and conflicts, facilitating the emergence of new symbolic processes based on the emotions that surface.

Data analysis was conducted according to Qualitative Epistemology, defined by Rey ⁷7. Rey FG. Pesquisa qualitativa e subjetividade. São Paulo: Thomson Pioneira; 2005. as the meeting of three principles: constructive-interpretative knowledge, singularity, and dialogue. The dynamic of these principles, combined with participant observation, allowed the researcher to interpret the subjects’ discourses, resulting in configurations. Convergence of the latter resulted in Units of Meaning.

The study complies with Brazilian National Health Council Resolution n. 466/2012. It is a subproject of the study Vertical Exposure to Zika Virus and its Consequences for Infant Neurodevelopment, approved by the Institutional Review Board of the National Institution of Women, Children and Adolescents Health Fernandes Figueira, Oswaldo Cruz Foundation, under case review CAE 52675616.0.0000.5269.

Results

The configurations emerging as expressions of subjectivity in families of CZVS patients were:

(1) Divine mission: feelings of punishment for having received the child, as well as the idea of having been chosen by God to deal with such an enormous sacrifice. The religious experience as a mission of faith and redemption;

(2) Family participation: the possibility (or impossibility) of relying on help from the immediate or expanded family in caring for the affected child;

(3) Prejudice: discrimination against the child due to the syndrome, and refusal to accept any negative opinions from others;

(4) Parent-child relations: dealing with the child based on manifestations of fear, sadness, and uncertainty vis-à-vis the diagnosis;

(5) Daily routine and economic and financial interference: changes in the family’s routine, impacts on the couple’s relationship, obstacles to social benefits, and sometimes the need to quit work to care for the child, leading to difficulties in covering the expenses;

(6) Media impacts: immense use of virtual social networks as a medium for support and exchange of information on the children’s development and references for treatment and social benefits.

The “units of meaning” built on the basis of these configurations allowed reflections on the individual and collective possibilities for families to deal with the children’s illness. Although the definitions are quite succinct, items 1, 2, 3, 4, and 5 do not differ from similar scenarios in experiences with other chronically ill children. What is new and specific to these experiences is the use of virtual social networks (item 6). In addition to acting as a means of communication between the families and the collective discussion of their different experiences, they serve to share strategies to overcome difficulties. The promotion of the families’ mental health was thus not limited to specific care in the team consultations, but also included the support provided by the virtual social networks.

Research aspects

This article aimed to present the initial reflections pertaining to the field of mental health that emerged during conversations with caregivers of children with CZVS. In addition to familiar issues like prejudice, parental relations, and changes in the routine, the families voiced the importance of the media and social networks. At first, the families felt supported by the great interest in the mass media, favoring the creation of a network of health care for children with CZVS. However, as the media interest waned, the families felt abandoned and began to face the difficulties involved in a chronic illness. Still, they found support and references in the virtual social networks to deal with the daily challenges over time.

In this sense, the parents see themselves as a community of victims of the epidemic, and many of them have to be with the child fulltime. Due to the exhausting routine of appointments and tests, many parents have sacrificed major parts of their workday or even lost their jobs. This new family condition interferes in the couple’s relationship in their subjectivities and marital life.

Another observation was that the parents assimilated medical language to describe their children’s seizures, malformations, and clinical condition. This may suggest the parents’ difficulty in establishing an emotional bond with the child, a relationship with the infant other than in terms of the disease, putting medical care in first place and relegating their own parental attitudes such as hugging, kissing, and playing with the child. This stance may stem from the difficulty in accepting the child’s limitations and their perception of the infant’s different development, directly impacting the establishment of a healthy parent-child relationship. “Acceptance of the baby” by the parent/caregiver is a fundamental issue than cannot be neglected, since this process is the starting point for affective bonding.

Although this is a preliminary study that merits more in-depth development in future research, it shows the crucial importance of a public policy to meet the various demands from CZVS, including mental health, with the promotion of measures to favor the child’s development.

References

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