Nursing - Theses

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    A Longitudinal Feasibility Study Exploring Cancer-Related Cognitive Impairment in Patients with Newly Diagnosed Aggressive Lymphoma
    Gates, Priscilla Ruth ( 2022)
    Background Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. Published evidence speaks to the challenges of prospective, longitudinal CRCI studies, and, to date, the feasibility of collecting data on cognition in this patient cohort has not been evaluated. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, peripheral markers of inflammation and neuroimaging. An exploration and description of patterns of cancer-related cognitive impairment over the course of treatment and recovery was also undertaken. Methods Eligible participants completed comprehensive assessments pre-chemotherapy, mid-chemotherapy, and six to eight weeks post-chemotherapy completion. Participants completed neuropsychological tests and self-report measures including cognitive and other patient-reported outcome measures. Full blood examination counts were used to calculate blood cell-based inflammatory markers at all three time points. Neuroimaging was undertaken in a subset of patients; 18F-FDG-PET/CT scans were undertaken at all three time points; MRI scans were undertaken pre-chemotherapy and six to eight weeks post-chemotherapy completion. Results 30 of 33 eligible participants (91%, 95% CI: 76%, 97%) were recruited over 10 months. The recruitment rate was 3 patients/month (95% CI: 2.0, 4.3 patients/month). Mean age was 57 years (SD=17 years) and 16/30 (53%) were male. The neuroimaging sub-study was optional; 11/30 participants (37%) were eligible to take part, and all agreed. Retention and compliance with all assessments was high at all time points. Only one patient was withdrawn from the study due to disease progression. On average, the study sample performed worse on neuropsychological tests compared with population norms and healthy controls pre-chemotherapy. Notable changes from pre-chemotherapy at follow-up were observed on some neuropsychological tests and self-report measures including improvements in verbal fluency as assessed by the Controlled Oral Word Association Test and verbal memory as assessed by the Hopkins Verbal Learning Test; deterioration in perceived cognitive impairment and abilities as assessed by the Functional Assessment of Cancer Therapy-Cognitive Function measure; improvements in emotional wellbeing as assessed by the Functional Assessment of Cancer Therapy-General measure; worsening of fatigue as assessed by the Functional Assessment of Chronic Illness Therapy-Fatigue measure; and improvements in anxious symptomatology as assessed by the Patient-Reported Outcome Measurement Information System Anxiety 7a measure. Most associations between a global deficit score calculated based on responses to neuropsychological tests and self-report measures were trivial. Most associations between perceived cognitive impairment and abilities, and other self-report measures were small- to large-sized. Conclusion Findings from this PhD demonstrate that it is feasible to longitudinally assess cognitive status and impairment in people with newly diagnosed aggressive lymphoma during their initial treatment and recovery. Compared with population norms and healthy controls, mean neuropsychological test scores pre-chemotherapy indicate cognitive impairments may precede treatment for aggressive lymphoma. Estimates of change in cognitive function based on neuropsychological tests provided evidence of improvement in verbal fluency and memory. Conversely, estimates of change in cognitive function based on self-report measures provided evidence of deterioration in perceived cognitive impairment and abilities. Most associations between objective tests and subjective measures were trivial. This PhD has generated knowledge to inform the development of future research to test efficacy of novel interventions to improve patient experiences and cognitive outcomes.
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    Unplanned Emergency Department Presentations by Cancer Patients Receiving Systemic Anti-Cancer Therapy
    Dufton, Polly Hypatia ( 2021)
    Background In Australia, emergency department presentations have been found to be common for people affected by cancer, and even more so for patients receiving systemic anti-cancer therapy. These presentations are associated with lengthy admissions, treatment dose reductions, and treatment delays. The emergency department often provides cancer patients with access to unscheduled medical care and to specialist cancer advice for symptoms they may experience. At a health system level, there has been an increasing number of people presenting to the emergency department, and subsequently, a need to reduce emergency department presentations in people who are not critically unwell. The need to deliver safe and high-quality care to mitigate unplanned emergency department presentations has received considerable attention in the international health care community. However, substantial work is needed to develop models of care to reduce emergency department presentations that may be potentially avoidable. The aim of this thesis is to understand why patients who receive systemic anti-cancer therapy make unplanned emergency department presentations. This understanding can support the development of robust evidence to inform future research and strengthen the development of models of care to support patients receiving systemic anti-cancer therapy. Methods This study used a convergent, mixed-methods research design, underpinned by Andersen’s behavioural model of health service use, to explore patterns of health service use and contextual, individual and health behaviours that influence cancer patients’ decisions to engage with health services. Study 1 was a retrospective cohort study of unplanned emergency department presentations that occurred within 28 days of receiving systemic anti-cancer therapy in the outpatient setting between December 2014 and November 2017. This study explored patterns of, and risk factors associated with, making an emergency department presentation to one large public tertiary hospital in Melbourne, Australia. Study 2 was a systematic review that explored methods reported in published literature investigating the incidence of unplanned emergency department presentations by patients receiving systemic anti-cancer therapy. Study 3 was an explanatory sequential mixed methods study that explored the contextual, individual and health behaviours that influenced the decision to engage with health services during systemic anti-cancer therapy. Thematic analysis of textual data was undertaken using template analysis. Participants in Study 3 were recruited from October 2016 to March 2017. Results Study 1 identified that 45% (n = 1,182) of cancer patients made a total of 2,310 emergency department presentations within 28 days of receiving systemic anti-cancer therapy in the outpatient setting. More than half (58%, n = 1,341) of the emergency department presentations resulted in patient admission for further care. Patients born outside of Australia and those diagnosed with head and neck, upper gastrointestinal, colorectal, lung, skin or breast cancer were identified as having a significantly increased risk of making an emergency department presentation. Study 2 comprised a total of 21 papers, and overall, the risk of bias was assessed as moderate. There was substantial clinical and methodological heterogeneity in the studies included in the systematic review, such as the population and study setting, the period for which the participants were observed, and in the reporting of participants who were lost to follow-up. In Study 3, 16 of 58 (28%) participants presented to the emergency department over the 6-month study period. Four overarching themes were generated from the 19 semi-structured interviews involving: 1) missed opportunities for preparation and support; 2) the importance of symptoms and need for care; 3) navigating the system and preference for care provider; and 4) enablers and barriers to accessing care. An additional two integrative themes were generated from the semi-structured interviews: 1) the unknown and unpredictable; and 2) individual health beliefs and behaviours. Integrated findings found that perceived need was a stronger driver of emergency department presentation than socio-demographics factors. Participants experienced a combination of enablers and barriers to accessing other sources of health care that may have influenced their need to present to the emergency department; these included that the availability of appointments with their general practitioner was a barrier, and the presence of social supports was an enabler. Based on findings from the literature review and this PhD, a new conceptual framework for emergency department use by patients receiving systemic anti-cancer therapy is offered. Conclusions The knowledge generated in this PhD contributes novel and important insight as to why patients receiving systemic anti-cancer therapy present to the emergency department. Studies have shown that some emergency department presentations are avoidable; the findings from this PhD can assist in developing new strategies to mitigate these avoidable presentations and can inform future healthcare policy, organisational planning, and clinical practice. This PhD has provided robust evidence for future research and the need for sophisticated research designs that reflect the complexity of cancer patients and the health care system.
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    Heartscapes: A new narrative for understanding the complex interplay of mental illness and cardiovascular health
    Kelly, Teresa Patricia ( 2021)
    People who live with serious mental illness such as schizophrenia and bipolar affective disorder are vulnerable to premature mortality. The leading cause of death is cardiovascular disease. Extensive research has produced important biomedical knowledge of this complex health problem. However, this knowledge has not translated into improvements in the cardiovascular health of people who live with mental illness. This PhD research project explored this real-world health problem through the stories and medical records of ten people living with mental illness. The research aimed to gain understanding of how living with mental illness influences cardiovascular health in everyday life. This study used critical realism and a realist qualitative design to frame a multi-method narrative inquiry. Data collection included clinical file reviews, semi-structured interviews, and narrative interviews. Visual methods were used to elicit experience and meaning making. Narrative analysis across the datasets produced a collection of ten illustrated core stories. Thematic analysis conducted within and across stories generated a metanarrative. In the metanarrative, a landscape metaphor was employed to explore how ten people who live with mental illness experienced and made meaning of their cardiovascular health in their everyday life. The metanarrative offers collective understandings of lived cardiovascular health. There are four key storylines: 1) Borderlands: Getting mental illness, switching on the complex interplay; 2) Entangled Lands: Living the complex interplay; 3) Heart Space: Uncovering the human hearts; and 4) Transformational Lands: Transforming vulnerable hearts. This approach generated a new narrative for understanding the complex relationship between mental illness and cardiovascular health. The new narrative affirms mental illness to be a powerful contributor to a complex array of interconnected cardiovascular risks. By shifting the critical realist explanatory lens from stories of illness to stories of transformation, this new narrative points to multidimensional connectedness as a fundamental precursor to whole heart health. Addressing the cardiovascular inequalities experienced by people who live with mental illness calls for whole of system transformation and the advancement of radical multileveled relational approaches to improving heart health.
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    Understanding nutrition-related symptoms, complications and health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours
    Laing, Erin Clare ( 2020)
    Gastroenteropancreatic neuroendocrine tumours (GEP NET) can lead to complex symptoms and reduced health-related quality of life (HRQoL). The management of GEP-NETs is challenging. To date there has been development of clinical practice guidelines and consensus guidelines for GEP-NETs; however, the supportive care needs and optimal nutritional management of patients affected by GEP-NETs remains under-researched and evidence to guide clinical practice is lacking. These malignancies have the potential to significantly impact on patient morbidity, HRQoL and nutrition due to the tumour location, functional status (secretion of hormones), symptoms and treatment. A limited number of published cross-sectional studies have indicated the presence of nutritional issues among patients with a GEP NET, including malnutrition (in 14-25%) and the presence of vitamin (niacin and fat-soluble vitamin) deficiencies. There is mostly anecdotal evidence for dietary change among patients with a GEP NET, and few studies have explored this phenomenon and its impact on patients. The aim of this thesis was to comprehensively describe the nutritional complications of GEP NET, and to explore the nutritional knowledge and practices of health professionals managing patients with a NET, enabling the first summary of NET health professional practices in regard to nutrition. A prospective longitudinal mixed-methods study was undertaken to comprehensively explore the prevalence of nutritional complications in patients diagnosed with a GEP NET. Patients recruited to this study had reduced HRQoL, specifically social functioning; and the presence of anxiety, depression and financial toxicity was observed. Common symptoms, reported in 40-80% of participants, were fatigue, abdominal discomfort, pain, bloating, wind/gas and diarrhoea. Results of this study showed that malnutrition was prevalent in up to 29% of patients, as was weight loss (up to 51%), loss of muscle mass (up to 62%) and dietary change (up to 56%), and all nutritional complications remained so over the six-month study period. Patient interviews conducted during the study period demonstrated the negative impact of a GEP NET diagnosis on patient’s HRQoL, and that dietary change and food restriction was often initiated by patients in response to their symptom burden. Nutrition and dietary information/management was identified by patients as an un-met need. Results of an exploratory mixed-methods health professional study showed that only 38% of NET health professionals are routinely performing screening for nutrition-related complications. Nutrition advice and management was varied and inconsistent, with health professionals identifying a lack of NET-specific nutrition evidence and guidelines as barriers to their practice. Results of the studies reported in this thesis contribute evidence and knowledge towards the presence and severity of nutritional complications among patients with a GEP NET, which are often under-recognised and impact on patient HRQoL. Results also provide the first summary of NET health professional nutrition-related practices. Results highlight the importance of identifying nutritional complications in this unique patient group and provide key insights into the nutrition risk factors relevant to patients with a GEP NET. This thesis will contribute to the future development of NET-specific nutrition guidelines and establishment of a robust nutrition risk screening process for NETs.
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    Experiences of engagement with early intervention services for first episode psychosis: a longitudinal, qualitative study
    Tindall, Rachel Marie ( 2020)
    Since the 1990s, many countries have established and embraced early intervention services for first episode psychosis as an essential component of mental health service delivery. Early intervention services aim to provide mental health treatment in a way that is accessible and acceptable to young people following a first episode of psychosis, whilst ensuring that treatment is high quality and evidence based. There is strong evidence for their effectiveness, however interventions are only successful if a person engages with them meaningfully. Dropout rates range between 6 and 60 percent, suggesting that early intervention services are variably meeting the needs of all the people using them. These dropout rates cannot be improved without first understanding the factors that influence a person’s decision to engage with, or disengage from, early intervention services. This thesis sought to add to our knowledge on this through two studies. Study One, a systematic meta-synthesis of nine qualitative studies, aimed to collect, interpret and synthesise how engagement is experienced within early intervention services for first episode psychosis. The findings highlighted the importance of the therapeutic relationship, including the significance of collaboration and communication. Notably absent from the qualitative literature were multi-stakeholder perspectives of engagement over time, including a comprehensive understanding of the needs, roles and responsibilities of the key people involved and strategies that supported service engagement and re-engagement. Study Two, a longitudinal, qualitative, multi-perspective study, aimed to understand how nine young people with first episode psychosis, their caregivers and their clinicians (total of 24 participants; nine case-study groups), experienced engagement and disengagement with an early intervention service over time. Data were collected over three time-points: 3-9 weeks, 4-7 months and 11-15 months after entry to the service, or at discharge if earlier (total of 55 qualitative interviews). Data on perspectives of engagement from the views of distinct participant groups at specific time-points were examined cross-sectionally, using thematic analysis. Multi-perspective experiences over time were examined longitudinally, using trajectory analysis. Overall, the findings highlighted the importance attributed to personal connections established and maintained during the engagement process. However, a large proportion of factors contributing to disengagement, or reduced quality of engagement, were found to be systemic and related to service delivery and design. Notably, early intervention services promoted diagnostic-specific interventions which were not always aligned with the varied needs of young people and their caregivers. Subsequently, clinicians experienced difficulty being flexible and responsive to individual young person needs, especially when clinical assessment suggested that the young person had a transdiagnostic presentation. These findings broaden out the traditional conceptual frame of the therapeutic relationship, which emphasises the association between disengagement and personal factors such as amotivation, inability to attend a clinic setting or misalignment of goals. Engagement is at the centre of mental health service provision. The two studies within this thesis have enhanced our theoretical understanding of engagement and disengagement, acknowledging that they are active and dynamic processes influenced by multiple relational, organisational and societal factors. To address disengagement, clinicians, services and policy designers need to deeply consider how to improve the interpersonal experience between young person, caregiver and clinician. This thesis suggests actions that can be taken on an individual clinician level (i.e., reflective supervision), service level (i.e., resource allocation) and policy level (i.e., a move towards transdiagnostic models of care). Any actions taken will greatly influence how successful participation in mental health treatment will be, resulting in better outcomes for the person, their caregivers, services and society.
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    The experiences of pain for hospitalised children following Haematopoietic Stem Cell Transplantation
    Plummer, Karin Jean ( 2020)
    Haematopoietic Stem Cell Transplantation (HSCT) therapy offers the hope of a cure to children with cancer and other serious illnesses. Despite the intensity and toxicity of this treatment, we know little about the pain associated with the complications of HSCT therapy or how pain is managed for these children. The aim of this study was to examine the pain experiences in hospitalised children following HSCT. In this study, the influences of contextual factors on how pain was communicated, assessed and managed in real time within the HSCT unit environment have also been explored. This study utilised mixed methods of data collection conducted in three phases. Phase One was designed as a single site cross-sectional audit of 258 episodes of pain-related care provided to inpatients of the Children’s Cancer Centre (n=54) and paediatric HSCT unit (n=19). Phase Two and Phase Three were conducted as a qualitative case study. The Social Communication Model of Pain provided the conceptual framework for the case study. In Phase Two, ten parent caregivers participated in semi-structured interviews at approximately 30 and 90 days post-transplantation to prospectively assess the impact of pain on children during HSCT therapy. Phase Three consisted of observations of clinical care (n= 90 hours) provided to paediatric HSCT recipients (n=29) by their healthcare providers (n=10). Semi-structured interviews were also conducted with healthcare providers (n=14) to gain their perspectives on pain-related care following HSCT therapy. The cross-sectional audit revealed pain related to medical treatment for cancer was common (n = 146/258, 57%) and persistent. Children’s pain was not consistently recorded by healthcare providers (n = 75/146, 51%). When pain was documented, it was predominantly mild with a median pain intensity score of 1 on an 11-point scale (IQR 1,3). Opioids were the mainstay of pain management interventions (n = 63/112, 56%) along with adjuvant medications (n = 47/112, 42%). Non-pharmacological methods of managing pain were under-represented in this audit (n = 38/146, 26%). There was no statistically significant difference between the pain-related care provided to paediatric HSCT recipients and general oncology patients. Due to limitations in the documentation practices of healthcare providers, it was decided to apply a qualitative lens to investigate the phenomenon of pain in children following HSCT therapy. The findings of the qualitative case study revealed that paediatric HSCT recipients experienced multiple painful complications that occurred sequentially across the trajectory of recovery from HSCT therapy. Pain predominantly occurred as a result of complications of HSCT therapy and related to medical procedures. Children, parent caregivers and healthcare providers also described a distinct entity of psychological pain in paediatric HSCT recipients. Parental presence played a substantive role in mitigating the influence of the clinical environment on children’s painful experiences. Paediatric HSCT recipients needed to be highly motivated to express pain to healthcare providers and parent caregivers in the clinical environment, and their willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their developmental capacity to express the complexity of HSCT related pain, their relationship with the healthcare provider and parent caregiver and a medical event associated with fear and uncertainty. The assessment of pain following transplantation by healthcare providers and parent caregivers was predominantly reliant on observation of children for behaviours indicative of pain rather than the application of validated pain assessment tools, or through the child’s self-report. Without formal measures of the pain experience, judgements regarding the severity of children’s pain were influenced by the high acuity of care post-transplantation and the emotional responses of healthcare providers and parent caregiver from bearing witness to children’s pain. Pain-related care was provided in an environment where healthcare providers worked diligently to relieve pain in children and decisions regarding pain management were shared with parent caregivers, and where appropriate, with children. Due to the severity of pain, opioids were often ineffective alone. However, the effectiveness of pain management was also hindered by misconceptions regarding the titration of opioid therapy and a lack of clinical guidelines for the sustained administration of opioid medications. Healthcare providers also expressed concerns that children were utilising analgesics for psychological gain whilst parent caregivers identified gaps in the provision of non-pharmacological interventions for the management of psychological and procedural pain. These findings provide previously unexplored knowledge regarding the experience and expression of pain in hospitalised children following HSCT therapy. Although there have been advances in paediatric HSCT therapy, children continue to experience persistent and severe pain that is often refractory to management, despite the best efforts of healthcare providers and parent caregivers. Overall, this study has demonstrated that the nature of pain for paediatric HSCT recipients is prolonged and multifaceted, with both physical and psychological contributors to the pain experience. Efforts need to be directed to support children to self-report on their pain experiences and it is recommended that validated methods of assessing pain by healthcare providers and parent caregivers be implemented into clinical practice. There is a pressing need for the creation of evidence-based supportive care guidelines for the management of pain post-transplantation to optimise children’s relief from pain.
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    Bedtime Stories: An exploratory study of the reasons for, experience and impact of, sleep disturbance for children with cerebral palsy and their parents
    Petersen, Sacha ( 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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    Clowns in the midst: understanding clown doctors at The Royal Children's Hospital Melbourne
    Brockenshire, Naomi Anne ( 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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    Memory-making in neonatal end-of-life care
    Thornton, Rebecca Kate ( 2019)
    Experiencing the death of an infant places parents at risk of prolonged and profound grief, therefore providing appropriate psychosocial support for parents is crucial. Current perinatal palliative care guidelines recommend memory-making activities, such as collecting or creating mementos and spending time caring for the infant, as an important aspect of bereavement care. However, evidence to support such interventions is scant. This study used the grounded theory method described by Corbin and Strauss (2015) to explore bereaved parents’ experiences of memory-making in neonatal end-of-life care. Eighteen bereaved parents participated in extensive semi-structured interviews. The core psychosocial process underpinning parents’ experience of memory-making was identified as “Affirmed Parenthood”. This core category was supported by three key themes; “Being a parent”, “Creating evidence” and “Being guided”. “Being a parent” included spending time with the baby before and after death, touching and holding the baby, and providing physical care. “Creating evidence” captured parents’ efforts to collect or create tangible evidence of their baby’s life through photographs and other mementos, and by involving others with their baby to ensure that people outside the immediate family would have memories of their child. Finally, “Being guided” represented parents’ need to be supported and encouraged throughout the process of memory-making. Where all three key themes were addressed in bereavement care, parents experienced affirmation of the significance of their baby’s life, affirmation of the significance of their loss, and affirmation of their role as the baby’s parents.
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    Procedural pain assessment in infants and young children: identifying a suitable behavioural assessment scale
    Crellin, Dianne ( 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.