Escutando crianças nascidas prematuramente sobre seu dia a dia

Abstract

Introduction: Prematurity is a global public health issue. In Brazil, 11% of children are born prematurely. Technological advances and developments in perinatal medicine have enabled the survival of increasingly immature infants. Although mortality rates have decreased and severe complications have stabilized, milder neurodevelopmental sequelae have increased. Motor coordination deficits are among the most frequent consequences of premature birth and can result in functional difficulties and challenges in performing daily activities, potentially restricting the child’s participation. Most studies on the motor development of preterm children are conducted from the adult's perspective, often excluding the children’s perceptions of their performance and participation. This qualitative study is part of the third stage of the project “Born before time: Prematurity and its functional consequences – Giving voice to mothers and children in times of pandemic,” and seeks to hear the voices of children, understand their preferences, motivations, abilities, and difficulties in everyday activities. Objective: To investigate whether children aged 6 to 9 years are aware of their prematurity history and to explore their perceptions of performance and participation in daily activities. Methodology: This is a cross-sectional qualitative study using semi-structured interviews and image elicitation. The data were analyzed using reflexive thematic analysis. Results: Eight children with low scores on a motor test and average scores on a cognitive screening were interviewed. All of them were aware of their history of prematurity. The activities that children enjoy doing, whether easy or difficult, are more related to play and Activities of Daily Living (ADLs). In these activities, participation occurs with greater involvement, higher frequency, and little need for parental assistance. The activities that children do not like to perform, whether considered easy or difficult, are more related to ADLs and Instrumental Activities of Daily Living (IADLs); participation in these cases occurs with lower involvement, moderate frequency, and greater need for parental assistance. Conclusion: The children spoke about their performance and participation, expressing their experiences, preferences, and motivations, and identifying skills, challenges, and strategies they used to carry out daily activities. These findings reinforce the importance of listening to children and using child-centered approaches, highlighting that their perspectives should be considered both in research and clinical practice.