Psychosocial repercussions experienced by parents who care for infants with syndromic orofacial clefts

Abstract

Abstract Objectives: to understand the psychosocial implications experienced by caregiving parents, resulting from the care of the child with cleft lip and/or palate associated with the syndrome. Methods: a cross-sectional and qualitative study, guided by the Consolidated Criteria for Reporting Qualitative Research tool, carried out between January and May 2019. Data collection was carried out through semi-structured interviews that were audio-recorded and transcribed in full. Thematic content analysis was used as the methodological framework and Symbolic Interactionism as the theoretical framework. Results: the participants were 16 caregiving parents. Four categories were listed: implications for diagnosis and treatment initiation, implications for financial issues and paid activities, implications for the care process, and implications for access to health resources. Conclusion: it was found that psychosocial implications experienced by these informal caregivers are multifaceted and complex, and that knowing them will enable planning and implementation of actions that contribute, in addition to the children's rehabilitation process, to the health and quality of life of those who care.

Keywords

• Cleft lip
• Cleft palate
• Caregivers
• Psychosocial support systems
• Psychosocial impact