Credit: Solen Feyissa via Unsplash.

14 November 2024

By Rosa Mendizabal and Viviana Ramirez, UDLAP (Universidad de las Américas Puebla, México)

World Prematurity Day, marked every 17 November, unites families and professionals to raise awareness about the challenges of preterm birth. Global landmarks are lit in purple, symbolising hope, compassion and support, while sock lines with nine full-sized pairs of socks and one tiny one represent the one in ten babies born prematurely. Addressing this issue through improved, holistic neonatal care remains crucial for reducing preventable deaths and adverse outcomes at birth. Despite the various challenges posed by preterm births, it is important to recognise that much has been achieved so far in improving care – in part through allowing children, including the most vulnerable neonates, a voice.

The journey of recognising children’s rights and voice

Various international developments have supported profound transformations in the understanding of children and childhood in this regard. A major step was the introduction of the United Nations Convention on the Rights of the Child (UNCRC) in 1989. Until this convention, children’s rights in most countries were restricted because they were considered legal infants without a right to a voice until they reached the age of majority (generally around 18 years of age), when the education system had prepared them for exercising their citizenship in adulthood. This interpretation of childhood, linked to citizenship and legality, had implications for how children were perceived in terms of their level of maturity, their capacity to express their own views on issues affecting them, and the perceived necessity of remaining under the supervision and control of adults; the UNCRC granted children universal rights as for the rest of the human population.

In parallel, the new sociology of childhood helped to transform the way we think about children, proposing that childhood is a social construction that can be understood as a unique stage shaped by relationships with adults, and that children can be seen as social actors who participate in the interpretation and reproduction of their social contexts. The work of Professor Berry Mayall (1936–2021) and Professor Priscilla Alderson has been particularly instrumental in acknowledging children as embodied actors, valuing children’s own knowledge in matters that affect them, including in healthcare. These principles underpin our Sociology of Childhood and Children’s Rights MA at the Social Research Institute, a programme that Berry and Priscilla shaped.

Approaches to researching child wellbeing, influenced by the disciplines of psychology and economics, have also evolved. One aspect of this has been to look at wellbeing multidimensionally, addressing children’s ability to thrive and flourish rather than simply their survival or the satisfaction of basic physical needs. A second aspect has been to focus on how children are doing and feeling in the present (well-being) rather than their development today for the achievement of future outcomes in adulthood (well-becoming). Finally, possibly the most important shift has been to move away from an adult-centred perspective on child wellbeing to a focus on children’s own perspectives on their lives. By looking at the child’s own subjective experiences and perceptions, understanding them as active agents in the very definition of the experience becomes fundamental to truly grasping how they are doing. One question this raises is whether it is possible to apply this approach to all children, even preterm babies in neonatal intensive care units (NICU). This is something we have looked at via the Neonatal Wellbeing Network (NWN), established in Puebla, Mexico in 2023, supported by the UCL Global Engagement Funds programme.

Children’s rights and voice in the neonatal unit

Within the NWN, we believe that babies’ participation in their environments and our understanding of their wellbeing can and should inform neonatal care. Following the work of Drs Heidelise Als and Berry Brazelton, young babies are viewed as competent and active agents via their bodily reactions and behaviours, which are commonly known as preterm babies’ cues. These cues are seen as attempts to engage with caregivers, whether parents or healthcare professionals, who are encouraged to respond to that ‘feedback’ and adapt the care they give, as appropriate. This approach has influenced neonatal healthcare worldwide, for instance in the globally recognised programme Family and Infant Neurodevelopmental Education (FINE), where the emphasis is on promoting a NICU environment that is responsive to babies’ cues, protective of brain development, and which provides positive sensory experiences (reducing pain and stress) and enhances bonding between infant and parents.

Our particular concern in the NWN is supporting such an orientation to the child in low- and middle-income countries (LMICs). Vital to this is building local evidence, taking a co-production approach. Our group of academics, healthcare professionals, parents, caregivers and citizens share knowledge, experiences and reflections. We work on equal terms to identify, design, implement and evaluate best practices to promote newborn care that is delivered with skill, compassion, and respect for children’s rights, to advance early child development in public health institutions. This year, funded by the British Academy and Leverhulme Trust, the network initiated a qualitative study in public hospitals in Mexico looking at the wellbeing experiences of Mexican families with a preterm baby admitted into a NICU and how these illuminate the challenges in the implementation of newborn care policies in this context. With this project, and with the work of the network in general, we wish to generate evidence to support the future design, reformulation and scalability of infant and family development programmes in similar settings.