Social Representations Associated with Organ Donation in the Paediatric Context

Maddison Norton

doi:10.25918/thesis.255

Paediatric organ donation is critically important to improving donation rates and meeting the demand for transplantation in children under 16 years old. Children in need of a heart, lung or kidney transplant require size-matched organs, and paediatric donation is often their only chance for life-saving treatment. Logistical, medical and other case-specific factors contribute to low paediatric donation rates. Even when these factors align, donation ultimately relies on consent from the child’s parents. Approximately 50 per cent of parents decline an organ donation request when a child dies and is suitable to donate. Although research into how the public understands adult donation is comprehensive, there is a lack of research addressing paediatric donation specifically. This thesis draws from Social Representations Theory (SRT) and Conceptual Act Theory (CAT) to investigate how paediatric donation is understood in the non-medical world. A summary of the research program and methods is provided in Chapter One, followed by a review of the literature examining organ donation decision-making in Chapter Two. Chapter Three provides an overview of SRT, specifically, the dialogical approach drawn from in this thesis. Study One (Chapter Four) investigated how paediatric donation was reported in 59 Australian newspaper articles published over a 14-year period. A theoretically-driven thematic analysis found that emotions were central to the media reporting and were portrayed in sets of antinomies and dyads (e.g. hope/fear, desperation/relief). Donation was reported as contradictory and mutually beneficial, highlighting the need to investigate the role of emotional tension in parental decision-making. The role of emotions in SRT and the relationship between emotional anchoring and themata are discussed. Study Two (Chapter Five) reports data from a survey of 401 parents with children under 16 years old. The study investigated the relationship between the context in which organ donation was considered and parents’ emotional responses to organ donation. Three factors identified in the literature (age of the potential donor, location, and whether or not the potential donor was deceased) were presented to participants in a 2x2x2 quasi-experimental design, using a vignette methodology. Emotional responses were measured through a word association task and as self-reported emotional experience on a 7-point Likert scale. The word associations were analysed through Individual Differences Scaling (INDSCAL) and compared with the results of a three-way ANOVA on three emotion sub-scales (Fear, Relaxation and Love) derived from Exploratory Factor Analysis (EFA). Positive and negative emotion words were more salient when the potential donor was a child than an adult, and negative emotion words were more salient when the potential donor in the vignette was deceased. A similar pattern was found in responses to the emotional experience scale; Love and Fear mean scale scores were significantly higher, and Relaxation scores were significantly lower for vignettes involving children than adults. The relationship between emotions and context is discussed in relation to SRT and CAT. The findings from Study One and Two suggest that donation is particularly emotional when it intersects with the paediatric realm. From the perspective of SRT, emotions are central to how paediatric donation is understood, and their salience is influenced by the context in which donation is considered. Chapter Six synthesises the findings from both studies and discusses the implications for theory and practice. This thesis highlights the need for paediatric donation to be addressed explicitly in research and in public awareness and promotion activities. The thesis concludes with recommendations for strategies to encourage paediatric donation decision-making in everyday contexts, to avoid this decision being made solely at a time of grief.

Social Representations Associated with Organ Donation in the Paediatric Context

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Social Representations Associated with Organ Donation in the Paediatric Context

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