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

Abstract Introduction In 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. Aim To 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. Methods In 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. Results Content 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. Conclusion The 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 Contribution Consistent 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.


| INTRODUCTION
Latin America has endured two global outbreaks in the last decade: the congenital Zika syndrome (CZS) and the coronavirus disease (COVID-19), both of which have significantly impacted children and families.In Brazil, children with CZS face social, medical and financial barriers, impacting their fundamental rights.A situation like the period of social distancing, necessary at the height of the COVID-19 pandemic, faced by the whole world, making the lack of access to health and education services even greater for all children with disabilities. 1 In 2015, during the Zika virus outbreak, the Brazilian Ministry of Health identified an increase in microcephaly cases from 0.5 to 20 per 10,000 live births. 2 Subsequently, these young children and their families are experiencing decreased access to rehabilitation services in addition to increased social isolation during critical developmental stages due to the COVID-19 pandemic. 3ka virus infection during pregnancy may trigger a cascade of neurological and sensorineural foetal changes, constituting CZS. 4 The most severe CZS phenotype is related to maternal infection in the first 4 months of pregnancy, with severity, presentation and prognosis characterized by the infant's head circumference at birth. 5 According to the latest epidemiological bulletin, Brazil registered 3535 cases of children with CZS from 2015 to 2020. 6ildren with CZS present with multiple neurological, motor, hearing, or visual disabilities and also deal with a poor intersectoral support network. 7Access to treatment and rehabilitation services is important for proprioceptive, sensory, linguistic, cognitive, emotional and social development.However, most specialized rehabilitation centres (CER) offer limited services, compelling caregivers to travel extensively searching for care for their children. 8Public policies favouring equity may help address this limitation in care, especially for low-income populations, however, this remains a significant challenge. 9e outbreak of COVID-19 reached a pandemic status in March 2020, 10 when a health emergency state was declared, and preventive measures were enforced worldwide.Some health conditions were considered a higher risk, including cerebral palsy and CZS. 11Children with disabilities infected with COVID-19 showed severe clinical conditions and a worse prognosis compared to nondisabled peers.
3][14] In fact, social restriction is one of the major impacts of health emergencies, especially for children with disabilities who already face limitations and social barriers. 15However, equity in care positively influences the well-being of children with disabilities, their families and the entire community during emergencies. 16,17Therefore, with an aim of ensuring access and equity as fundamental human rights for everyone during the pandemic, strategies are needed to understand and minimize the consequences of social isolation, loss of services and other changes in the daily lives of these children and families. 18e of the ways to target a deeper understanding of the experiences of children with disabilities and their families during the pandemic is by examining the construct of meaningful participation.Participating in activities of daily living is a human right and a key component for good physical, mental and social conditions for children with disabilities. 19,20Initially defined by the World Health Organization's International Classification of Functioning, Disability and Health (ICF) as involvement in life situations, participation is now part of related constructs that include two elements: attendance and involvement. 21Participation is also a major outcome of interest in child rehabilitation.A viable and effective strategy to assess the participation of young children according to the perception of parents is the photovoice method. 22MA NASCIMENTO COUTINHO ET AL.

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Photovoice is a method within the participatory action research (PAR) framework that evaluates a phenomenon or experience of interest from the point of view of participants as coresearcher, through their own photographs and narratives. 23Photovoice is a useful tool to document and understand concepts affecting a particular group of people, such as social determinants of health, the influence of family and friends, adherence to rehabilitation programs, service quality and availability of care systems for specific groups. 24Through the images and narratives used to describe their experiences, participants act as agents socially transforming the reality of the community and facilitating the understanding of information on relevant topics. 25,26Photovoice is versatile and effective in assessing the needs and understanding the experiences of people with disabilities. 22However, some authors suggest more studies using this technique. 27nsidering the lack of research using this framework, and the need to more specifically understand the participation of children with CZS experiencing social isolation due to COVID-19, this study's aims were twofold: (1) Explore the daily lives of young children and their families via photovoice, and (2) Discuss and evaluate strategies to improve participation in this population during a global pandemic.

| METHODS
This study used a combination of PAR and qualitative research methods.Photovoice was employed with mothers as co-researchers to photograph and contextualize the daily lives of children with CZS. 28Focus groups were then conducted to discuss and evaluate strategies to improve the participation of these children during the pandemic.Qualitative approaches, including online focus groups, are also beneficial methods for engaging with stakeholders that share similar experiences to elicit similar and divergent perspectives as well as generate new ideas in a group dynamic. 29

| Participants
Mothers of children with CZS were recruited from rehabilitation centres in the state of Rio Grande do Norte.The participants were involved in other projects, attended these centres and were already known by one of the researchers, they were invited by telephone call in which they received brief information about the study, and data were collected and analysed remotely.
The targeted sample size (6-10 participants) was intentional, and based on recommended group sizes in the literature that are generally adequate for deepening social relationships and ensuring meaningful contributions from all group members in qualitative studies. 30The chosen sample size has also been shown to be effective in collecting information and discussing photos used during photovoice. 31

| Procedures
Data collection occurred between September 2020 and June 2021, following a nine-step script from recruitment to validation of results (Figure 1).
F I G U R E 1 Timeline for photovoice application.
A pilot photovoice study was carried out to explore the feasibility of planning, the effectiveness of executing the method and the identification of possible methodological blocks to participant adherence. 32It included a mother of a 6-year-old child with CZS, who participated individually in the training stage, using the same methodology and applications intended for the broader participant group.The pilot aimed to explore the understanding, and relevance of the questions selected for the focus group, and estimate the duration of the interview, for this reason, it was carried out with the purpose of aligning the methodology.Therefore, the data referring to this participant were not considered in the analysis.
Mothers in this study's cohort used their cell phone cameras to photograph important moments, people and places, including themselves and their children.Mothers had 45 days to take photos that visually demonstrated their answers to six guiding questions (Table 1).Mothers were asked for between 6 and 18 photos, totalling 1 to 3 images for each question.After selection of their individual photos, each mother's selected photos were shared within the full participant group, and the mothers voted individually to select the five photos that best represented each category.
Following the photo taking, a focus group was conducted with the mothers.Dialogues on predetermined topics occurred in a focus group through the use of a semi-structured guide for approximately 90-110 min (Table 1).During the focus group/interview, the participants exposed, shared and discussed the photos, allowing a deep reflection on the meaning of each moment in the children's daily lives.The focus group was led by a moderator (responsible for facilitating the dialogue and ensuring all participant voices were heard), and an observer (responsible for note-taking, capturing nonverbal information and offering support). 33,34If participants became unavailable for the focus group, individual interviews were offered at a later date.
Researchers use an adapted version of the SHOWeD methodology (Table 1) to guide the contextualization of photos taken using photovoice; it includes five predetermined questions to identify the problem demonstrated or situation exposed in the photo and identify or create strategies to improve them. 35Problem identification facilitates the codification of themes, whereas strategy identification aims at awareness of and action for social change.This set of questions may be used directly or indirectly to guide a discussion or investigation. 36,37e interviews and the focus group were audio and video recorded in full with permission to enable further analysis.

| Content analysis
According to Leal and Henriques, 38 the process of content analysis first begins in the focus group, which contextualized the photos, created a debate and allowed the exchange of experiences.Data transcription in audiovisual format was cross-referenced with digital recordings to ensure information accuracy.This stage was performed by an independent researcher and verified by another researcher present in both stages.Transcripts were then reviewed to cluster similar experiences into categories.
Two researchers independently analysed all data, followed by a group discussion of preliminary results among the research team.The content was analysed using an inductive approach from themes T A B L E 1 Overview of the content explored in group stages.

Collective photovoice training
Presentation of research objectives, details about the photovoice applications, and execution calendar.
Explanation of the informed consent form and the authorization for the use of image, voice and/or likeness using google forms.
Instructions for capturing photos and emphasizing the guiding questions: | 2503 extracted from the data, according to Sposito et al. 39 and Leal and Henriques, 38 comprising six steps: familiarization with the data, creation of initial codes, search for themes, revision, definition and naming of themes and report writing.As co-researchers, the mothers participating in the study collaborated in the final analysis stage, validating the established categories.The first validation was conducted remotely and individually, in which the mothers chose which category most closely aligned with the sentences and photos exposed.A researcher presented the opinion of the researchers, and in case of divergences, the mother decided the category.
Two categories overlapped, requiring a second validation, in which a booklet was developed with the photos selected by the mothers in the reorganized categories.The mothers received the material via message and were asked to read it and answer whether they agreed with the reorganization.All mothers participated in this stage and sent responses to the main researcher.All information was discussed among researchers to ensure rigour in content analysis and data reliability.

| Trustworthiness
All researchers have experience with qualitative research, three are senior researchers, and one has previous experience using photovoice.Two authors already knew the participants, but the focus groups and interviews were conducted by research assistants who had no previous relationship with the mothers, to minimize the possibility of bias.The same procedure was adopted in the transcription, collection and analysis of the contents.Table 2 presents strategies used to minimize the risks of bias at various stages of the research.

| Ethical aspects
This research was submitted and approved by the research ethics committee of the Faculty of Health Sciences of Trairi from the Federal University of Rio Grande do Norte (opinion number: 4,216,560).Mothers signed the electronic informed consent and assent forms and the authorization for the use of image, voice and/or likeness.Pseudonyms were used to protect confidentiality.

| Participants
Seven mothers of children with CZS who are followed at the Anita Garibaldi CER and the physical therapy service of the Faculty of Health Sciences of Trairi from the Federal University of Rio Grande do Norte participated in the study.One mother completed the pilot study, and six participated as a study cohort.Children were aged 3-5, and mothers were 18-36 years.Four mothers participated in the remote focus group to contextualize the photos, and two performed this step individually and remotely due to illnesses.All mothers were Brazilian, the primary caregivers and lived in different cities of Rio Grande do Norte (Table 3).
Photographs were taken at home or selected from the cellphone image gallery of the mothers due to social isolation as a preventive measure against COVID-19 (recommended by the World Health Organization).
The six mothers sent a total of 73 photos.During the subsequent focus group, mothers presented between 6 and 18 photos and discussed their meaning (some had only one photo per question, and others had the maximum 3 photos requested).At the end of the focus group, mothers individually voted on which photograph best represented what had been discussed in the focus group, which fell into five main categories.This voting process made it possible to reduce from 73 to 5 photos, retaining what was perceived as the most impactful, single photo representing each category from the discussion.Subsequently, the validation procedure of the categories/ photos was carried out.

Content analysis revealed five categories that represented aspects of participation of children during social isolation:
T A B L E 2 Strategies used to establish rigour.

Credibility Triangulation by different researchers
Content analysis was by two researchers.

Member verification
Interview summaries were provided to all participants during data collection.A summary of the categories was presented to all participants during the content analysis.

Interrogation in pair
Three researchers discussed the thematic analysis.

Transferability
Rich description of participants Demographic information about the participants was collected.

Reliability Dense description of research methods
A detailed description of the methods was provided for study replication.

Peer interrogation
As above.

Confirmability Triangulation of different researchers
As above.participation preferences, family relationships, access to health and developmental supports, access to education and social isolation.The findings and selected photos are presented below, with additional quotes from the mothers included to support each thematic category.

| Participation preferences
In response to the photos selected in this category, the mothers described situations regarding independence, autonomy, respected  Source: Daniela, mother of Leonardo (2020).

| Social isolation
Though social isolation brought barriers to many families, three mothers reported that children actually enjoyed more time to stay home with family members during social isolation.
We used to go out a lot to physical therapy, medical appointments, and could not enjoy our time together.
You can see that she was happy and smiling to be with (2) Family Relationships were expressed as a promoter of participation; Regarding participation in activities of daily living, Santos et al. 42 found that initiatives aimed at the active participation of the primary caregiver of children with microcephaly provided the caregiver with a greater sense of autonomy and responsibility, considering the child's needs.Photovoice is a technique that can assist in the empowerment process described in the literature.Sharing PAR research photos and narratives with the community, press agencies, social control organizations and public managers aims to further encourage parents to defend their children's rights and promote social change. 43garding family relationships, mothers described it as essential for their children to convey security, happiness and peace, being an important predictor for participation, similar to previous research. 44,45These authors identified that economic status, family cohesion and family preference can influence the participation of children with cerebral palsy and other physical disabilities.
Further, according to Maria-Mengel and Linhares, 46 welcoming and caring for children and their families are essential for achieving greater functional gain in the first 4 years of children's lives.Family participation and collaboration are of paramount importance for the rehabilitation of children with microcephaly, it is an indispensable factor that favours the involvement of children with their therapy and with the professionals involved. 47Therapy services that are familycentred, consider the child's needs, focus on structured play and recreation activities and on health and well-being can support the development of children with CP. 48garding access to health care, the families in this study invested in the development of children with physical disabilities and sought opportunities for rehabilitation therapies.These findings also reflect the current literature, which indicates that empowering parents with ongoing guidance and regular follow-up is essential to ensure a high quality of life for children with disabilities. 49 Before COVID-19, telerehabilitation was used more frequently in high-income countries. 54In low-and middle-income countries (e.g., Brazil), where CERs exclusively developed the majority of rehabilitation interventions, this did not occur.Thus, home-based programs during the COVID-19 pandemic that expanded into low-resource areas may have helped improve the delivery of low-cost rehabilitation services in natural settings. 48However, trained professionals have been required to implement telerehabilitation with few resources, and both professionals and parents have had to demonstrate their commitment to new models of care delivery. 55garding access to education, mothers whose children attended school perceived a loss in the teaching-learning process during the pandemic.In a recent study, education professionals felt a lack of training to receive children with CSZ at school; recognized the importance of obtaining health information to ensure children's safety.This was consistent with some perceptions and experiences of mothers in the present study regarding the attitudes of education professionals.Investments in continuing education, structural changes, inclusive equipment and new pedagogical strategies have been suggested to face this scenario and contribute to more inclusive educational spaces for children with disabilities. 56Masonbrink and Hurley 57 further emphasized the need for careful planning for safe and equitable school reopening and strategies that ensure additional support for children with disabilities.
Regarding social isolation, mothers' perceptions of the benefits and drawbacks of social isolation, mirrored existing literature has reported that children's long-term isolation can impair physical and mental health 58 or can interfere with the development of consciousness. 59Specifically, Vale et al. 53 showed that a sudden change in the daily lives of children with CZS made it difficult to reestablish or create affective social bonds after the COVID-19 pandemic.This change was avoided by the mothers in this study.
During social distancing, children were surrounded by family protection and familiar places.Therefore, social readaptation after social distancing will require time, empathy and dedication from family members and professionals, aiming to promote the participation of children with CZS.

| Study strengths and limitations
This research allowed mothers of children with CZS to express the impact of the COVID-19 pandemic on the participation of their child.
Using photos and focus groups, we extracted details of their life stories by incorporating the mothers as co-researchers.A strength of this study is that this experience may be one method for empowering mothers of children with CZS to share their stories and improve their confidence in advocating for children's rights.Caregiver empowerment and rights-oriented advocacy may contribute to the inclusion of children with developmental disorders. 60

T A B L E 3
Abbreviation: GMFCS, Gross Motor Function Classification System.
photo, he was holding on to the gate; it is the moment I put on the orthosis, and he stands up; he was looking at the street thinking he was going out because he is crazy about the street.(Boy, 5 years old, Gross Motor Function Classification System [GMFCS] = IV, Julia)
Photo 5: The effects of social isolation.

( 3 )
Access to Health showed situations of support for the developmental of children and some difficulties for mothers to guarantee what is their children's right; (4) Access to Education revealed two distinct situations between inclusive education and the lack of it and (5) Social Isolation, revealed benefits that favoured family union, but detriments in that it interrupted health treatments and hampered the socialization of children with CZS.Mothers were able to discuss their perceptions of their children's feelings as well as participation and health barriers and lifestyle adaptations during the COVID-19 pandemic.These findings corroborate a study by Reinchenberg et al., 40 in which mothers of children with CZS reported feelings of incomprehension and marginalization, and difficulties in daily life.Maternal perspectives such as these have also been shown to encourage government policy development centring on the biopsychosocial model of the ICF.For example, hearing about the lives and experiences of mothers of children with CZS has strengthened support and assistance networks for this population and may minimize social barriers to ensure inclusion and interaction.41 Geographic representation was our main limitation, as mothers were from a single region of Brazil affected by the Zika virus epidemic.Internet instability during remote meetings also presented a challenge, since most mothers lived in the countryside with few resources.Other potential barriers for mothers included domestic demands and the stress of the pandemic, which impacted our ability to assemble, motivate and make mothers feel welcomed to report personal experiences in online meetings.In addition, the sample is relatively small, which may not represent the reality of other children with CZS during the pandemic and will have an impact on the reflections on the transferability of discoveries of these findings.Finally, the presence of the researchers may have introduced acquiescence or reporting bias, though attempts to mitigate these biases included the use of a common set of guiding questions, openness and unconditional positive regard for all experiences that allowed a deeper exploration of the participants' individual contexts, and the use of multiple researchers and member-checking throughout the research to ensure accuracy and avoid misinterpretation of the mothers' experiences and resulting themes.

4. 2 |
photos captured several aspects of the routine of children with CZS.They also highlighted the importance of considering the negative effects of social isolation and preferences of children with CZS, offering school and social assistance to promote participation.The findings of this research can guide changes in the availability of services and support for families of children with CZS in Brazil, 1-What makes my child happy?2-What makes my child sad? 3-What my child likes to do? 4-What does my child not like to do? 5-What facilitates the daily life of my child in this social isolation?6-What hinders the daily life of my child in this social isolation?
H: What happened or is happening in the photo?Briefly describe it.O: How does this relate to your life?W: Why does this happen?E: What could this image represent to other people?What did your child experience (feelings, thoughts and sensations)?D: What can we do about it?LIMA NASCIMENTO COUTINHO ET AL.
51me mothers also reported difficulty in acquiring a wheelchair due to financial limitations and the failure of the Unified Health System to provide assistive technology resources.These findings corroborate the work by Oliveira et al.,51who identified that mothers of children with CZS are the main caregivers and are responsible for domestic and social demands, facing financial barriers and high social 50r children with CZS, as well as the exhausting routine of medical consultations and treatment (especially in large cities).Other authors also identified that health professionals and mothers of children with CZS report that health care was inadequate, distributed in several services, fragmented and centred in the urban area, highlighting the inaccessibility of specialized care in the Unified Health System.50LIMANASCIMENTOCOUTINHO ET AL.| 2509