Paediatrics (RCH) - Theses
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ItemAppearance-altering facial surgery on children: An empirically informed ethical analysis( 2015)Using empirically informed ethical analysis, this thesis investigates the ethics of appearance-altering facial surgeries performed on children. These surgeries have attracted controversy in the media and ethics literature and are the subject of legislation and professional guidelines, which leave much to individual practitioners’ discretion. Despite their contentious nature, very little is known about surgeons’ practices and decision-making processes regarding these surgeries. This thesis is ‘empirically informed’ in two different ways: (1) by existing empirical data on psychosocial outcomes of children with facial differences and children who have undergone appearance-altering facial surgeries and (2) by new interview data from 22 surgeons who encounter requests for these surgeries. Using reflective equilibrium as my method of ethical analysis, these two kinds of empirical data are combined with established paediatric bioethical principles and concepts, including the zone of parental discretion and children’s assent and dissent, to arrive at a comprehensive position on the ethics of performing these surgeries. Using reflective equilibrium, I found some aspects of surgeons’ decision-making processes and practices diverged from existing ethical understandings about the relative roles of children and parents in medical decisions. One such area related to the ethical weight surgeons attach to children’s refusals. While most ethicists in the literature advocate including children in decisions, they do not necessarily recommend giving them decision-making authority. In contrast, most surgeons tended to give children a larger role in decisions about appearance-altering facial surgeries, viewing them as ultimate decision makers. In this thesis, I make normative claims about the relative levels of ethical weight surgeons should place on children’s and parents’ wishes when making decisions about these surgeries. Using the established ethical framework of the zone of parental discretion and related ethical concepts of harm and benefit, I claim that several morally relevant differences exist between these surgeries and other medical procedures requested for children. These include their uncertain risk-benefit ratio, their elective nature, uncertainty as to how the child will later perceive their facial difference and the acceptability of surgery, and the existence of alternative, less risky and invasive psychosocial interventions for alleviating appearance-related psychosocial harm. I argue these differences warrant placing greater (even absolute) ethical weight on children’s wishes, especially when children refuse these surgeries, and comparably less ethical weight on parents’ wishes, when making these decisions. Although my ethical position is similar to most of the surgeons’ judgments, I argue it would be worthwhile for surgeons to know about and use ethical principles and concepts more explicitly when making decisions and communicating with children and/or their parents. I also claim that surgeons ought to make more of a considered effort to ascertain children’s actual wishes and inform parents and/or children about non-surgical options for alleviating appearance-related psychosocial distress, and be taught strategies for saying no and how to articulate their ethical reasoning. These findings have significant implications for clinical practice, raise questions for further ethical analysis and contribute to refinement of existing understandings of children’s assent and dissent and parents’ role as proxy decision makers for their children.
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ItemVery often the answer's not black or white: current practice, clinician and parental experiences of genomic testing in paediatric genetics clinics( 2015)Developmental delay (DD) has been estimated to affect 1 – 3% of the population and the underlying cause often remains unknown. For parents, receiving a diagnosis for their child’s DD can be a source of validation, and may impact upon their child’s prognosis, treatment and access to available supports. New genetic technologies, chromosomal microarrays (CMA), are now used across Australia to help end the ‘diagnostic odyssey’ families often experience. CMA tests have the capacity to identify genetic changes at much higher resolutions than was previously possible, but may increase the complexity and uncertainty of results. There is no research into the process of these consultations and the way in which this information is communicated to patients attending a genetics clinic. Using qualitative techniques and guided by the frameworks of symbolic interactionism and interactional sociolinguistics, this study provides a rich and nuanced analysis of paediatric genetic consultations. A multi-layered approach was used, enabling investigations of both the ‘front stage’ (consultations) and ‘backstage’ (interviews with parents and clinicians) to facilitate and further understand emerging patterns. Four data sources were used: (1) pre-consultation surveys with parents (n=32); (2) audio-recordings from consultations (n=32); (3) post-consultation telephone interviews with parents (n=32); and (4) post-consultation interviews with clinical geneticists (n=10). Overwhelmingly, parents were complimentary regarding consultations and described feeling reassured. Those who were disappointed were largely parents who were desperate for a diagnosis. The vast majority of parents reported a positive relationship with the clinician and felt that the genetic information had been explained in a very useful manner. Clinicians described consultations as varied and dependent on many factors including parents’ hopes and diagnostic expectations. They identified their primary role as a diagnostician but also acknowledged the therapeutic benefits these consultations could provide to families. Clinicians displayed mixed opinions regarding new tests, appreciating the benefits while also wary of inherent complexities and uncertainties that more detailed genetic testing would bring. Seven phases were identified within consultations, and on average clinicians contributed more words than parents, however there was variation across and within consultations. Although content of consultations was extremely similar, clinicians appeared to have varied approaches, and different styles were described including the clinical assessment approach and conversational style. Some parents were able to describe their experiences of their child’s development as a ‘narrative’, while during other consultations clinicians seemingly had a checklist of closed questions. Most clinicians used an historical narrative to describe the evolution of genetic testing; comparing past and current limitations with the promise of future genomic technologies. Findings enabled the development of an ‘ideal’ consultation in this setting, which highlights the importance of a positive clinician-parent relationship, especially in light of diagnostic uncertainty and advancing genomic testing capabilities. Narrative medicine could play a valuable role both for parents and clinicians as they make sense of genomic testing and diagnostic uncertainty. With the impending introduction of whole genome sequencing into a clinical setting, now is an ideal time to reflect and learn from past and present experiences, in order to maximise the therapeutic potential of such scientific discoveries.
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ItemWhen adolescents are both students and patients with chronic health conditions: perspectives of parents, education and health personnel( 2014)Chronic health conditions in adolescents (10 - 19 years of age) are a major cause of disrupted education. Education disruption can result in long-lasting consequences for peer relationships, a sense of normal living, and career development. Adolescents with chronic health conditions benefit from the support of their parents, as well as health and education sector professionals. Previous research has examined school-based support for students with chronic health conditions. Research has largely examined the perspectives and experiences of teachers and parents of primary school children (6 – 12 years of age) with complex and chronic health conditions, as well as profound disability. However, little is known about how the health-education interface functions for adolescents with chronic health conditions. The views of health professionals regarding school-based support for adolescents with chronic health conditions are largely missing from the literature. Additionally, what research has been conducted has either combined highly disparate disorders under the label of chronic health conditions, or has concentrated on a single condition. The current study aimed to respond to fundamental gaps in the literature through investigating the perceptions and experiences of parents of adolescents diagnosed with cancer, anorexia nervosa, or cystic fibrosis at the health-education interface. The adolescents were enrolled in years 10 - 12 of secondary school in Victoria, Australia. The perceptions and experiences of health and education sector professionals were also sought with regard to school-based supports for adolescents with chronic health conditions. The overarching objective of the study was to construct an understanding of the health-education interface and how it functions for parents of adolescents in the final years of secondary education. The study achieved this through interpreting the lived experiences of parents, health and education sector professionals via in-depth interviews. Sixty-five in-depth interviews across five cohorts were completed. Thirty-eight parents of adolescents with one of three chronic health conditions were interviewed: cystic fibrosis, as a congenital condition diagnosed in early life (n=16); anorexia nervosa, as a mental health condition with physiological complications (n=11); and cancer, as a condition diagnosed in adolescence (n=11). Health personnel (n=11) and education personnel (n=16) were also interviewed. Thematic analysis of the qualitative data revealed six overarching themes that characterised the lived experience of the health-education interface for parents, health and education sector professionals. These were: (1) Keeping life normal: linking health and education through diagnosis disclosure; (2) Managing disclosure timing and disclosure behaviour at the health-education interface; (3) Protecting identity through non-disclosure, misdirection and escape; (4) Trust and collaboration: key workers and parents at the health-education interface; (5) Experts and novices: trust and confidence at the health-education interface; and (6) Cogs, conduits, links and keys: navigating the health-education interface. The findings highlighted the value of comparative data when examining perceptions of the health-education interface. Significant differences emerged in disclosure experiences and behaviour between conditions. Additionally, significant differences were apparent in the help-seeking behaviour of parents and access to support for students between those with mental health, congenital and later onset conditions. Health and education professionals also held differing views of their roles in support of adolescents with chronic health conditions. Within this thesis, the implications of these findings for both the health and education systems are discussed in detail. Predominately, these findings reveal a failure of equitable practice within the education sector in relation to the implementation of support for students with a range of chronic health conditions. How policy and practice across different chronic health conditions and schools at the health-education interface may be delivered with greater consistency of service is the current challenge. Recommendations for more equitable support processes are offered.
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ItemExploration of antenatal β-thalassaemia carrier screening in Victoria, Australia( 2012)Currently there is no coordinated β-thalassaemia carrier screening program carried out in Australia. Unlike other genetic screening programs, this screening has been incorporated into routine healthcare practice. This is attributable to most women undergoing a full blood examination (FBE) at their initial prenatal visit, with a low mean corpuscular volume (MCV) or mean corpuscular haemoglobin (MCH) indicating that they may be a carrier, therefore triggering further β-thalassaemia diagnostic testing. Little is known about the processes currently applied across the different hospitals and practices within Australia to screen women for β-thalassaemia, as well as both women’s and healthcare professionals’ attitudes towards this screening process. To further understand the β-thalassaemia carrier screening process(es) undertaken within Victoria as well as the acceptability of this different approach to carrier screening, a qualitative study was carried out. This aimed to explore carriers’ and health professionals’ experiences of and attitudes towards the β-thalassaemia carrier screening process in Victoria. Semi-structured interviews were carried out with 26 female carriers of β-thalassaemia who had been pregnant within 12 months prior to being interviewed, 10 carrier couples of β-thalassaemia, as well as 23 healthcare professionals who attend to women during the antenatal β-thalassaemia screening process. Data were analysed using inductive content analysis and process mapping. Findings revealed that women had undergone variable experiences while being identified as a carrier, with surprisingly more than half of the participants being made aware of their carrier status prior to pregnancy, at various ages. This was due to women having undergone FBEs for numerous reasons, other than thalassaemia screening specifically. Pre-pregnancy screening was seen to be preferable due to both women and healthcare professionals believing this to be the most suitable time for testing. Other women had only become aware of their carrier status during pregnancy. Variation was also seen amongst the screening processes carried out by the different healthcare professionals, with often little use of guidelines and lack of knowledge, which was often not believed to be ideal by healthcare professionals. This highlights a need for further education of healthcare professionals. Most of the women did not recall being informed about β-thalassemia before notification of their carrier status and therefore did not make a decision about being screened. They were generally satisfied, however, for doctors to make the decisions regarding tests conducted. The women however would have preferred to have been informed about the screening test before it was carried out. Insufficient information was also reported being provided to women after they were notified of their carrier status, leading to misconceptions and confusion. Even though most women did not provide informed consent, this variable thalassaemia carrier screening process incorporated into routine care was seen to be acceptable amongst this community who overall had positive attitudes. A greater emphasis, however, should be placed on information provision, both pre and post testing, as well as further education for healthcare professionals.