Experiences of children with congenital Zika syndrome while using motorized mobility: a qualitative study using the photovoice method

Abstract

Aim

The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers’ perceptions of their children’s experiences while using ride-on cars at home and in the community, focusing on children with CZS.

Methods

This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the ‘Go Zika Go’ intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community.

Results

The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment.

Conclusion

The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.

IMPLICATIONS FOR REHABILITATION

• To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.

• The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.

• Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.

• The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.

Keywords:

• Congenital Zika Syndrome
• mobility
• participation
• children with disabilities
• photovoice

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was funded by PROPESQ/UFRN, grant number (05/2019), and REDE Brasil. This study was partially funded by the Coordination for the Improvement of Higher Education Personnel - Brazil (CAPES) - Financial Code 001.

Notes on contributors

Amanda Spínola Barreto

Amanda Spínola Barreto - Physical Therapist. Student of Postgraduate Program in Rehabilitation Sciences at Federal University of Rio Grande do Norte in Brazil.

Jean Bendito Felix

Jean Bendito Felix - Occupational Therapist. Student of Postgraduate Program in Rehabilitation Sciences at Federal University of Rio Grande do Norte in Brazil.

Heather Feldner

Heather Feldner - PhD in Disability Studies. Assistant Professor and physical therapist within the Department of Rehabilitation Medicine at University of Washington in the USA.

Mara Terezinha Figueiredo

Mara Terezinha Figueiredo - Graduate student in physiotherapy at Federal University of Rio Grande do Norte in Brazil.

Gaby Kelly Macedo

Gaby Kelly Macedo - Physical Therapist. Student of Postgraduate Program in Rehabilitation Sciences at Federal University of Rio Grande do Norte in Brazil.

Dinara Nascimento Coutinho

Dinara Nascimento Coutinho - Physical Therapist. Student of Postgraduate Program in Rehabilitation Sciences at Federal University of Rio Grande do Norte in Brazil.

Maria do Socorro Gadelha

Maria do Socorro Gadelha - PhD in Sanitary and Hospital Administration. Professor of Physical Therapy at Federal University of Paraiba in Brazil.

Karolinne Monteiro

Karolinne Monteiro - PhD in Physiotherapy. Professor of Pediatric Physical Therapy at Federal University of Rio Grande do Norte in Brazil.

Egmar Longo

Egmar Longo - PhD in Research on Disabilities. Professor of Pediatric Physical Therapy at Federal University of Paraiba in Brazil.