Nursing - Theses
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ItemBedtime Stories: An exploratory study of the reasons for, experience and impact of, sleep disturbance for children with cerebral palsy and their parents( 2019)BACKGROUND: Cerebral palsy (CP) is a motor disorder associated with many comorbidities. Published evidence to date suggests that sleep problems are common in children with CP. Chronic sleep problems are often reported in the clinical setting. However, they are often poorly understood and therefore not well managed. This study aimed to explore the frequency and type of sleep problems in children with CP, the experiences of the children and their parents regarding sleep problems, and the impact of those sleep problems on the children and their parents. METHODS: An exploratory mixed methods sequential design was chosen. Critical social theory was used as a theoretical framework. This qualitatively driven study had three phases: qualitative scoping interviews, a quantitative survey that included the use of validated sleep assessment tools, and follow up qualitative interviews. Participants were parents or caregivers of children aged six to twelve years with CP from Victoria, Australia. The data derived from thematic analysis in Phase One was used to inform the design of Phases Two and Three. RESULTS: Phase One consisted of qualitative semi-structured interviews of nine parents. Thematic analysis identified two major themes: Seeking Solutions and Having to Survive. The key finding of this phase was that parents were asking for help with sleep problems, but often did not receive effective advice or treatment. Phase Two involved an online quantitative survey using the REDCap platform, which collected 126 complete data sets. Sleep problems were reported by 46% of the cohort. The parents of children with a high score on a sleep assessment tool (indicating a sleep problem) had a higher mean score than parents of children without sleep problems (mean difference:12.1 (95%CI:9.2-15.0) (p<0.005)). This indicates that parent sleep is affected by child sleep. Parents found finding effective sleep solutions challenging. Phase Three involved qualitative semi-structured interviews of 19 parents. The thematic analysis identified seven major themes: 1) My Child Doesn’t Fit into the Box, 2) A Mother’s Ears are Always On, 3) Sleep Disturbance is like Water Torture, 4) Sleep is One of Many Spot Fires, I Put it on the Backburner, 5) Luck, Money or Jumping Up and Down, 6) There is Never One Silver Bullet and 7) Help: The Earlier the Better. The key finding for this phase was that parents of children with CP often described their child’s needs being different to what is provided for by systems and services. This difference created significant challenges when seeking health solutions. DISCUSSION: The mixed methods interpretation of the three phases of research resulted in six main findings: 1) finding effective sleep solutions can be challenging, 2) sleep problems are prevalent and persistent but are often untreated, and sleep is not a priority, 3) sleep problems have a significant negative impact on parent sleep and daily life, 4) sleep problems are often complex, 5) sleep problems can improve, and 6) overnight care is often the responsibility of mothers. Clinical recommendations arising from this research include: 1) adopting an individualised approach to addressing sleep problems, 2) elevating sleep as a clinical priority for both parents and clinicians, and 3) incorporating nurses and allied health professionals to be both advocates and providers of sleep health care, for children and families. Where sleep problems are refractory to treatment, respite from overnight care needs to be prioritised urgently. Applying a critical social theory lens to the data revealed two dominant ideologies that may contribute to the persistent presence of sleep problems for children with CP: 1) the dominance of the biomedical model and 2) dominant ideologies around motherhood. This research thesis applied an innovative approach to answering the research questions, which resulted in novel findings. This study has addressed a significant gap in the literature and will be used to make transformative clinical change and likely improve sleep for children with CP and their parents.
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ItemClowns in the midst: understanding clown doctors at The Royal Children's Hospital Melbourne( 2018)Clown doctors are a feature in paediatric hospitals, visiting children and families, providing a welcome escape from the reality of hospitalisation. Though the use of humour to improve health and wellbeing has been widely researched, limited exploration of the clown doctors has occurred. This study aims to elucidate the work of clown doctors within a major paediatric hospital. This was an ethnographic study. Ethnography is an innovative approach to paediatric research, giving an intricate view that is otherwise difficult to attain. Participants for this study included the clown doctors employed at The Royal Children’s Hospital, and every person they had a meaningful encounter with during the course of their work, including patients, families, clinical and non-clinical staff. Data was collected via participant observation, with approximately 1,500 hours of ‘clown ward rounds’ documented over one year. Furthermore, 25 hour-long semi-structured interviews were conducted with a range of key informants. A constructivist framework was used to analyse emergent concepts. Constructivism explores how relationships and interactions create the individual’s understanding of the world. Furthermore, how different understanding, or meaning, can be derived from interactions based on individual context, background, culture and personal history. When asking people about the clown doctors, most ascribed a function, such as: distraction, anxiety reduction and procedural assistance; entertainment and making people laugh; emotional support and providing comfort; and communication, including translating clinical information to families. These functional elements of the clown doctors are the result of a more complex, intimate human connection that develops due to the nature of clown doctors being low-status, open, vulnerable and, in particular, existing as outsiders to the medical establishment. Clown doctors use humour to break down the emotional barriers created by illness, which they achieve through being person-centric and offsetting medically driven interactions the hospital often demands. They empower patients, returning a sense of control that is generally absent for hospitalised children. While almost universally acknowledged as a positive addition to the hospital, most people who encounter the clown doctors have little conception about the scope of their work. Although clown doctors are often described in concrete clinical terms, their real power lies in their ability to connect with people, and the psychosocial advantages that connection provides. The results of this descriptive study deliver valuable insight and a comprehensive understanding of clown doctors and the complexity of human relationships within a major paediatric hospital. Through this research we can identify what the clown doctors bring to the hospital environment, how paediatric staff can employ their unique skills more effectively, and finally give long-overdue credence to the notion that laughter, mirth, creativity and child-like wonder has as much place in a hospital as medicine.
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ItemUnfractionated heparin therapy in paediatrics( 2009)Unfractionated heparin (UFH) therapy is frequently used in tertiary paediatric healthcare facilities despite a lack of paediatric-specific research informing the optimal therapeutic intensity, monitoring recommendations or side-effect-profile in infants and children. As a result, the majority of clinical recommendations regarding UFH management in children have been extrapolated from adult evidence. The process of developmental haemostasis, in association with the variable pathogenesis of thromboembolic disease (TED) in children compared to adults, suggests that extrapolation of adult guidelines for UFH management to children is not ideal. This study hypothesised that the process of developmental haemostasis would influence both the action and effect of UFH in children of different ages. This hypothesis was tested by addressing the following aims: 1. To determine the pharmacokinetics (PK) of UFH in children of different ages; 2. To compare the different methods of monitoring UFH in children of different ages; 3. To identify the impact of competitive plasma binding of UFH in children of different ages; 4. To determine the impact of UFH upon tissue factor pathway inhibitor (TFPI) release in children. A prospective cohort study of children receiving a single bolus dose of UFH for primary thromboprophylaxis in the setting of cardiac angiography was conducted. Venous blood samples were collected prior to the UFH, then at 15, 30, 45 and 120 minutes post-UFH bolus. Laboratory assays performed included activated partial thromboplastin time (APTT), anti-Xa assay, anti-IIa assay, thrombin clotting time (TCT), protamine titration and TFPI. Levels of two plasma proteins known to competitively bind UFH (vitronectin and platelet factor 4) were determined and the impact of competitive plasma binding upon UFH activity, as measured by the anti-Xa assay, was quantified. A population approach to pharmacokinetic analysis, based on protamine titration results, was performed using WinNonMix™ Professional 2.0.1 (®1998-2000 Pharsight Corporation, Mountain View, CA, USA). Results were analysed according to the following age-groups: less than one year; one to five years; six to ten years; 11-16 years. Sixty-four children were recruited, ranging in age from six months to fifteen-and-ahalf years. The mean dose/Kg of UFH across the entire cohort was 90.9± 15.5 IU/Kg. Pharmacokinetic model specifications were systematically assessed, investigating the impact of parameter covariates and different error models upon objective function value and/or curve fitting. A first-order kinetic model best fitted the data. This model used weight 0.75 as the covariate of clearance and total weight as the covariate for volume of distribution. Parameter estimates for clearance and volume of distribution both demonstrated variance from adult and small neonatal PK studies of UFH, however methodological differences in PK analysis techniques limited comparisons. The half-life of UFH reported in this study was consistently and significantly shorter than that previously reported for adults, but longer than that reported for neonates. All measures of UFH-effect demonstrated a significant and prolonged increase post- UFH bolus. The mean APTT was 261 seconds 102 ± 25 minutes post-UFH, representing a seven-fold increase from the mean baseline APTT (38 seconds). Anti- Xa assay levels were within the therapeutic range for TED management (0.35 to 0.7 IU/mL), or greater, at every post-UFH bolus timepoint. This prolonged UFH-effect was evident to nearly two hours post-UFH bolus, without concurrent UFH infusion. Age-related differences in UFH-response were evident for anti-Xa, anti-IIa and protamine titration results. Furthermore, during periods of high UFH concentration, the ratio of anti-Xa to anti-IIa activity in children less than one year of age significantly favoured UFH-mediated anti-Xa effect over anti-IIa effect (1.9), compared to teenagers (1.3). This study demonstrated poor correlation between protamine titration and both the anti-Xa assay (r2 = 0.47) and APTT (r2 = 0.56). Use of the anti-Xa assay (0.35 to 0.7 IU/mL) or protamine titration assay (0.2 to 0.4 IU/mL) to establish APTT-based reference ranges for therapeutic management of TED resulted in APTT ranges with upper limits greater than 250 seconds. No age-related quantitative differences in plasma levels of vitronectin or platelet factor 4 were identified across the childhood years. The addition of dextran sulphate (DS) to ex vivo study samples demonstrated no change in anti-Xa activity in samples collected within 20 minutes of UFH bolus, however a significant increase in anti-Xa activity following the addition of DS was evident at all later timepoints post-UFH bolus. The measurement of TFPI before and after a single bolus dose of UFH demonstrated children have a similar immediate increase in TFPI activity following intravenous UFH compared to adults. However, the children in this series demonstrated a significantly prolonged level of increased TFPI activity, out to 102 ± 25 minutes post-UFH, compared to that reported in adult patients. This study has developed the first paediatric-specific PK profile of UFH and has elucidated a number of age-dependent UFH-mechanisms of action that contribute to the previously reported age-dependent response to UFH in children. The results of this study support the hypothesis that developmental haemostasis influences both the action and effect of UFH in children of different ages.