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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ItemProcedural pain assessment in infants and young children: identifying a suitable behavioural assessment scale( 2018)Infants and young children frequently experience pain as a consequence of medical procedures associated with their healthcare. Pain management is often suboptimal, and this is in part due to the difficulties associated with assessment of pain of infants and children too young to self-report pain intensity. Observable behaviours indicative of pain have long been considered a viable alternative and scales comprised of these behaviours have proliferated in the literature. However, it remains unclear which scales are best suited for procedural pain assessment and whether they are well supported by psychometric data. The aims of this project were to: identify behavioural observation scales potentially suitable for procedural pain assessment, summarise available psychometric data and prospectively test the psychometric properties of potentially suitable scales when used to assess procedural pain in infants and young children. These aims were addressed in three phases of work: i) a thorough interrogation of the literature to identify scales considered potentially suitable for assessing procedural pain in infants and children, ii) a series of systematic reviews to summarise the evidence supporting the psychometric properties of the identified scales and iii) a prospective observational study to test the psychometric properties of these scales used to assess procedural pain in infants and young children. Three scales, the Face, Legs, Activity, Cry and Consolability Scale (FLACC), the Modified Behavioral Pain Scale (MBPS) and the Visual Analogue Scale for observers (VASobs), met predefined criteria and were considered potentially suitable for inclusion in this project. The systematic reviews showed that available psychometric data was insufficient to recommend these scales for procedural pain assessment of infants and children. There was data to tentatively support the MBPS and to a lesser extent the VASobs for assessing immunisation related pain. The data regarding the FLACC scale was inconclusive. The results of the prospective study confirmed that all scales were sensitive to pain. The FLACC scale and MBPS scores were reliable (intraclass correlation (ICC) 0.92 and 0.87, respectively) but VASobs scores were less reliable (ICC 0.55). The FLACC scores showed the highest sensitivity (94.9%) and specificity (72.5%) for procedure type (painful vs non-painful) at the lowest cut-off score (pain score 2, area under the curve (AUC 0.83)). Similar results were achieved at a MBPS cut-off score of 4 (sensitivity 91.5%, specificity 77.5%, AUC 0.85). The FLACC scale resulted in more incomplete scores (p < 0.000) and was changed more often than other scale scores. Reviewers liked the VASobs most, considered it the quickest and easiest to apply, but judged the FLACC scale and MBPS to be more likely to be useful. In conclusion, three behavioural observational pain scales to assess procedural pain in infants and young children were identified and included in systematic reviews. This work culminated in a prospective study, the results of which support use of the FLACC scale, but not without reservation as there are practical limitations when used to assess procedural pain. These results build on promising existing evidence that suggests that the FLACC scale may currently be a suitable scale for procedural pain assessment in infants and young children.
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ItemAsymptomatic thrombosis following the use of central venous catheters in children( 2017)Central venous catheters (CVCs) are the major cause of thrombosis in acutely unwell neonates and children. This thesis reports the outcomes of a prospective study of 189 children in a paediatric intensive care unit (PICU) that aimed to determine the frequency of asymptomatic CVC-related thrombosis during hospital admission, and the incidence of residual CVC-related thrombosis and clinically significant post thrombotic syndrome (PTS) two years following CVC placement. The study also sought to identify risk factors predictive of CVC-related thrombosis and clinically significant PTS and determine the utility of ultrasound screening for asymptomatic CVC-related thrombosis in acutely unwell children. This study is distinct from previous work as children in this cohort identified to have asymptomatic CVC-related thrombosis were not treated and were followed for two years to determine the natural history of asymptomatic thrombosis. The incidence of asymptomatic CVC-related thrombus during hospital admission was 21.2% (n=31), despite over 80% of the cohort having received thromboprophylaxis. One child had a symptomatic CVC-related thrombosis. Sixteen children had new or residual thrombus identified on the follow-up ultrasound, performed a mean of 26 months post CVC placement. Of 126 PTS assessments completed at follow-up, 10.3% of children were diagnosed with mild PTS as classified by both the Manco-Johnson instrument and Modified Villalta scale. Only two children were identified to have clinically significant PTS (Manco-Johnson instrument only), one of whom had a symptomatic CVC-related thrombosis. Whilst over one fifth of the cohort had asymptomatic CVC-related thrombosis, only one of these children developed clinically significant PTS. There were no clinical embolic phenomenon or deaths attributable to CVC-related thrombosis. These findings suggest that ultrasound screening for asymptomatic CVC-related thrombosis is not indicated in children in PICU as, despite no treatment (in all but one child), the incidence of any thrombosis-associated morbidity was extremely low. In addition, the study’s findings support previous evidence that thromboprophylaxis provides no protection against CVC-related thrombosis in children. Neither D-dimer nor Factor VIII were predictive of CVC-related thrombosis. However, this study identified that children with femoral CVCs had a significantly higher incidence of residual thrombosis and thrombosis-associated morbidity. Children with femoral CVCs were also significantly more likely to have a higher PIM2 probability of death, cardiac arrest, hypotension, elevated D-dimer and Factor VIII compared to children with jugular CVCs. Whether the placement of the CVC in the femoral veins or the apparent higher acuity of this sub-group of patients is the mediator of increased risk (residual thrombosis and morbidity) compared to jugular CVC placement remains unclear. This study contributes novel insights into the natural history of asymptomatic CVC-related thrombosis, demonstrating a very low morbidity associated with jugular CVC placement. This study informs future clinical research targeting children most at risk of long-term CVC-related thrombosis associated morbidity. Specifically, further investigation of similar cohorts of children to those in whom femoral CVC placement occurred in this study is needed to elucidate risk factors for poor outcomes and the potential for a risk stratified approach to the treatment of asymptomatic CVC related thrombosis.
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ItemWarfarin therapy in infants and children( 2004)Much of the evidence that guides anticoagulant management in infants and children has been presumptively extrapolated from adult medicine. We now know that there are several reasons as to why such extrapolation may not be ideal. This study sought to explore key outcomes of warfarin management in infants and children. The medical literature supports a direct association between patient knowledge and the stability of warfarin therapy. Phases One and Two of this project respectively investigated Parental and Nursing staff understanding of warfarin therapy in the paediatric population. Phase Three constituted a retrospective audit of warfarin management at a single tertiary paediatric centre over a two-year period. Data collected aimed to shed light upon the efficacy and safety outcomes of warfarin therapy in this cohort. Phase Four consisted of the development and implementation of a novel parent education program, which was piloted in a trial of home monitoring of warfarin therapy. Results of Phases One and Two demonstrated that parental and nursing understanding of warfarin therapy in children is poor. Although a causative link cannot be proven between the level of knowledge each of these cohorts possess, the role nurses play as educators must be reviewed in light of these outcomes. Phase Four demonstrated that parental understanding of warfarin therapy significantly improved following implementation of a novel education program, and these improved knowledge outcomes can be sustained over time. This program facilitated the implementation and evaluation of a home INR monitoring pilot study. Target therapeutic range (INR) achievement compared favourably with studies reported in adult patients, despite the presence of numerous confounding factors in the paediatric population. However, adverse event rates were higher than has previously been reported for similar paediatric populations. The incidence of adverse events appeared to be greater in patients not managed by a dedicated anticoagulant clinic. Warfarin management in children presents unique challenges that must be addressed if optimal anticoagulant therapy is to be achieved.
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ItemAnaesthetic-mediated changes in the electroencephalogram in the paediatric population( 2012)Monitoring adult patients, with electroencephalogram (EEG) based depth of anaesthesia monitors, has enabled many improvements in perioperative outcomes. However, the same improvements have not been demonstrated during paediatric practice. To facilitate the development of reliable EEG based depth of anaesthesia monitors for children, an increased understanding of how children’s EEG responds to anaesthetics is required. This thesis investigates how particular aspects of the paediatric EEG respond during anaesthesia and comprised of two studies. Firstly, an observational study investigated children’s EEG during usual practice anaesthesia. Results from this study informed the development of the second study where EEG data was obtained from children during a controlled anaesthetic protocol. Results from both studies demonstrated that children’s EEG during anaesthesia does vary according to age. Evidence was also found that children’s EEG is related to anaesthetic dose but not for very young children. In addition, the hemispheric location of where EEG data is collected is an important consideration in assessing the EEG of children during anaesthesia. This thesis provides insights into the poor performance of depth of anaesthesia monitors, derived from adult EEG information, when they are used in the paediatric population. Results from this thesis also provide direction for future research towards development of a reliable depth of anaesthesia monitor for the paediatric population.
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ItemQuality of life assessment in children requiring oral anticoagulant therapy( 2011)The absence of robust evidence regarding the management and clinical outcomes of anticoagulant therapy in children challenges interpretation of the risks and benefits of long-term anticoagulation therapy for children. Decisions about treatment increase in complexity in light of the potential burden of treatment on children and families. Quality of life (QoL) is a recognised and validated measure of the burden of treatments for children; yet, there is a lack of data about the impact of long-term warfarin therapy on QoL for children and families. This thesis describes the first study to evaluate the impact of a home international normalised ratio (INR) self-testing (home ST) program on the QoL of children and their families. The aim of the study was to determine if participation in a home ST program improves QoL for children requiring long-term warfarin therapy and their families. Parents of children requiring long-term warfarin therapy and children aged eight to 18 years participated in the QoL study. Three validated QoL questionnaires, the Pediatric Quality of life Inventory Generic Core Scale™, the Pediatric Quality of Life Family Impact Module™ and the KIDCLOT Pediatric Anticoagulation Quality of Life © inventory were employed to measure QoL. Questionnaires were completed before commencing home ST and six to 12 months later. Participants answered four open-ended questions when completing the questionnaires for the second time. Fifty-six families entered the home ST program during the study period. The children were aged between 2 and 17 years. Fifty-five parents and 35 children completed QoL questionnaires. Results of INRs tested at home were collected. The percentage of time the children’s INRs were in their target therapeutic range was 71.3%, which is comparable to many published paediatric studies of home ST. Parents reported statistically significant improvements in QoL for themselves, their family and their child, across all questionnaires following the commencement of home ST (mean difference in score p ≤ 0.003 on all questionnaires). The children’s scores of their own QoL also improved; however, this improvement was not significant. Parents’ report of their children’s QoL was significantly lower than the children’s report of QoL on all questionnaires at both time points. As well as being the first validated baseline QoL data in an Australian population of children requiring oral anticoagulant therapy, this study reports QoL for the largest cohort of children requiring warfarin therapy worldwide. The employment of both quantitative and qualitative methods to assess QoL enhanced understanding about the impact of home ST on QoL. This study has demonstrated that home ST in a population of children requiring long-term warfarin therapy is safe, efficacious and improves the QoL of children and parents. This study confirms home ST successfully reduced the burden of therapy and maintained excellent clinical outcomes. The results of this study not only identify the impact of warfarin therapy upon QoL in children, but offer an alternative evaluation strategy to sensitively measure the impact of interventions in this population. Accurate QoL assessments ensure children’s and families’ values are integrated with the current evidence for best clinical practice.