Children's experiences of living with Cleft Lip and Palate (CLP) : a qualitative study in Colombia

This thesis explores children ́s views and experiences of living with CLP in three regions of Colombia. CLP is a birth condition resulting from a failure in the development of facial structures during the development of the embryo. CLP features visible clefts in the upper lip, the palate which often compromise speech, and in facial structures such as nose shape, dental alveoli and teeth. Colombia is a middle-income country located at the North-West of South America. It is the third largest country in this continent with a population around 50 million. Children and young people make up a third of the population (DANE, 2018). The prevalence of CLP in Colombia is high, reflecting the same pattern elsewhere in South America. Despite its economy's growth in the last decade, social inequalities and poverty limit significantly children ́s full participation in society. The negative impacts of poverty are more stringent on those with certain bodily impairments and particular healthcare needs, such as those with CLP. Much existing literature concerning CLP focuses on exploring genetics and environmental factors involved in its aetiology, as well as assessing the quality of life of those with this condition. These mostly quantitative studies are limited in their potential to offer a more in-depth picture of what it is like to live with CLP from the child ́s perspective. Given the paucity of qualitative research about this topic in the majority world, my study explores children's understandings of CLP and their experiences of living with this condition in respect of two main dimensions: social lives and treatments; both are common aspects in the lives of those with CLP. Findings presented in the thesis are the result of a qualitative study conducted in Colombia between March and August of 2018. Twenty children with CLP between 6 and 12 years old, from both urban and rural areas of three regions of Colombia (Bogotá, Cundinamarca and Boyacá) were interviewed on three different occasions. All participants were active attendees of Operation Smile-Bogotá (a CLP clinic). Two different approaches were used for interviews: home based (usually interviews 1 and 3) and walking interviews (interview 2) in combination with some creative tools. The interviews were designed to encourage children's participation; creative tools (emotion body maps, life story works and pictorial cards of different types of bodies) were used in a flexible way considering participants ́ preferences and needs. Walking interviews entailed tours guided by the children to places/spaces significant to them, or simply places they wanted to visit around their homes/neighbourhoods. Data were analysed through a bespoke approach which incorporated the listening guide (Gilligan et al., 2011), disnarrated, non-narrated approach (Vindrola-Padros & Johnson, 2014) and thematic analysis (Ritchie et al., 2013). Analysis of the data drew upon literature from childhood studies, medical sociology, sociology of the body, emotions and disability studies. The thesis puts forward three key findings: first, the children defined CLP as bodily differences but not as an illness. They understood the origin of CLP as the result of certain life circumstances and events occurring before birth and in line with God ́s will. Their causation models were culturally-socially shaped and greatly influenced by narratives available to them (mainly from parents). Their agentic position in constructing meanings of their condition was not obscured by their dependency on parents ́ stories; rather, this dependency facilitated the enactment of their agentic roles. Second, CLP brought about important social costs, communication difficulties and bodily discomforts. Functional and physical differences such as speech difficulties, lip scars and nasal differences were stigmatised by school peers. This stigmatisation process affected their social relationships and interaction in significant ways. Despite the disruptive character of stigma for their social lives, children actively resisted, challenged and coped with these events. Embodiment of emotions and emotion work were key in shaping their responses of stigma resistance. Third, although the children described their differences in non-biomedical and pathological terms, they also spoke of the need to 'fix' these differences through medical treatments. Embedded in a CLP health care plan, the children ́s bodies and therapeutic outcomes were regulated by healthcare practitioners, thus reflecting how their bodies were part of a medical body project. The bodily transformations and improvements that came with treatments were in line with the children ́s needs and desires: improving communication, displaying a more normal body (e.g. more usual speech, an upturned nose), the alleviation of certain symptoms associated to CLP. Particularly 'speaking well' and a more common physical body offered them the opportunity to reduce chances of stigma. This shows that the children were not passive recipients of these medical works but that this body project was also their project. This thesis offers a nuanced picture of how Colombian children with CLP understand their condition, the social costs of living with CLP, and their views and experiences with treatments. A shift from a binary view of children's agency towards a more contextual and relational focus of agency reveals how children asserted their agentic positions even in the presence of potential agency constrainers. Implications of this study for practice include: the importance of incorporating children ́s understandings into clinical practice in order to provide more culturally sensitive healthcare services, and the need to offer children greater emotional and social support to manage everyday difficulties such as stigma.