Nursing - Theses

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    Becoming a Nurse: A mixed Methods Study of Student Nurse Employment and Graduate Nurse Experience
    Muir, Elizabeth Muir ( 2023-11)
    Background: Evaluations have demonstrated that employing student registered nurses (RNs) in healthcare roles may improve their clinical skills and confidence and subsequently, the work readiness of new graduate RNs. The recent expansion of student employment models in healthcare, including the Registered Undergraduate Student of Nursing (RUSON) employment model in Victorian public hospitals, has provided an opportunity to explore the influence of student RN employment on graduate nurse transition to practice. Aim: To explore the ways in which student employment impacts student learning and preparation for practice, and investigate how employment influences transition experience. Research questions: 1. How do different models of student employment influence RN transition to practice? 2. What influence do student employment models have on nursing workforce recruitment and retention? Design/Method: A mixed methods study using a sequential explanatory research design was undertaken in two phases of the study. Phase 1: A cross-sectional survey combining an adapted version of the Revised Casey Fink Graduate Nurse Experience (r-CFGNE) survey tool including additional questions related to student nurse employment and the influence of that employment on learning and preparation. Phase 2: Focus groups/interviews, informed by early review of Phase 1 data, included graduate RNs recruited through the survey. Setting: Public and private hospital system in Victoria, Australia. Participants: RNs currently undertaking a graduate nurse program in Victoria, Australia (June to September 2022). Results: Phase 1: Seven hundred and seventeen participants opened and completed at least some of the survey. Five hundred and thirty-four surveys (74%) completed surveys were included in the analysis. Sixty-five percent of participants worked while they were studying for their nursing degree. Participants indicated that employment in a nursing related role while a student RN influenced their learning: employment in health or aged care 76.3% (p-value < 0.001); employment as a RUSON 75.4%, (p-value <0.001). Similarly, preparation for work was reported to enhanced by employment healthcare roles: employment in health or aged care 77.7% (p- value < 0.001), employment as a RUSON 81.8%, (p-value <0.001). Employment as a RUSON was the role most frequently nominated as having the greatest influence (42.5%), the next most frequent was employment as an AiN/HAN/PCA (21.5%). Differences were observed between type of employment undertaken while studying for a degree in nursing and graduate retention. A significantly larger proportion of nurses who had been employed as a RUSON during the course of their degree indicated that they remained with that employer throughout their graduate year; when compared to other survey participants working in health and aged care (55% vs 23.5% p-value <0.001). In relation to retention, while a greater proportion of RUSONs (68.1%) reported intending to stay in nursing compared to those who did not work in health (63.6%) this difference was not significant (p-value = 0.362). Phase 2: Eighteen nurses who completed the survey participated in an interview or a focus group. Analysis of the qualitative data yielded four themes. Thematic analysis demonstrated that employment in health while undertaking a nursing degree had a positive influence on graduate nurse preparation. Students who were employed in positions that worked directly with an RN were also able to develop a greater connection to nursing. Conclusion: Graduate nurse transition is influenced by engagement in the paid employment as a student. This influence is perceived to be most beneficial where employment provides the student with the opportunity to work in clinical areas with more direct care and nursing experience, particularly when the employment is part of a nursing team. This provides the student with informal but important work integrated learning that could be better utilised. The increased connection to nursing and the workplace may also serve to increase opportunities for graduate nurse recruitment and retention. Implications for nursing: Nursing and midwifery continue to be challenged by workforce pressures, including the recruitment and retention of graduate nurses. This research found that the RUSON model can strengthen the graduate nurse experience and support workforce development. The influence of different student RN employment models on the graduate RN workforce requires further exploration. Further research scoping the models over a longer period of time is required to measure the impact on graduate nurse preparedness for work, practice based learning, and graduate nurse recruitment and retention.
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    Women’s Safety During Labour and Birth: A Qualitative Study
    McCormick, Margaret Phyllis ( 2022-12)
    Women’s safety is a key priority during labour and birth. However, preventable harm and errors in maternity care remain, resulting in life changing consequences for women and their families. Despite improved maternity care, adverse and sentinel events persist, resulting in maternity care being considered a high risk/high litigation area. To mitigate risk and litigation, organisations implement strategies to optimise women’s safety. However, what is not clear is if women’s perspectives of safety align with those of organisations that implement safety initiatives. This thesis aimed to explore the concept of safety during labour and birth from two key perspectives: that of the women and of the organisations that provide care. This study, using a multi-method qualitative design, was conducted at a large Melbourne metropolitan hospital, which provides care to women from culturally and linguistically diverse (CALD) backgrounds. Data were collected during focus groups (n = 12) and individual interviews (n = 20) with women following their birth; and individual interviews with key organisational stakeholders (n = 11), responsible for the provision of care to women during labour and birth. This study found that organisations implement a range of safety strategies. These included: clinical governance such as monitoring women’s morbidity and mortality; models of care and staff training in the area of managing emergencies. When measuring outcomes, organisations focused on physical outcomes for the mother and newborn, such as morbidity, and largely overlooked the woman’s perception of safety. In terms of safety, for the most part, there was a disparity between how women and organisations define the concept. Women define safety as a holistic construct which includes not only physical elements but spiritual, emotional, cultural and psychological elements. This definition involved a complex interplay of factors such as: communication with staff, competent staff, cultural practices and spiritual attributes. Safety was further defined as occurring on a dynamic continuum from feeling safe to feeling unsafe. Organisations define safety as a physical and operational construct, contingent on the interaction of many dynamics. These included: organisational systems and processes; communication between staff and women; and having competent staff. The importance of including women’s views was also a key factor when key stakeholders defined safety. A conceptual model on safety during labour and birth was developed using Bourdieu’s Theory of Practice. The model provides a lens for organisations to identify aspects of care which are pivotal for women when defining safety. By identifying these elements and incorporating them into how safety is operationalised, may assist with mitigating complaints, subsequent litigation claims and building safe intrapartum care. Additionally, recommendations, driven by the data, are described to inform maternity care providers about how to optimise women’s safety during labour and birth. The key recommendation centres on the need for maternity care providers to include women’s views when developing, implementing, and evaluating safety strategies during labour and birth.
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    Exploring post-treatment care for women with high-intermediate and high-risk endometrial cancer: A mixed methods study
    Kinnane, Nicole Anne ( 2022)
    Endometrial cancer (EC) imposes a significant burden on women and the health system. Intense post-treatment follow-up (FU) for women with high-intermediate (H-I) and high-risk (H-R) disease lasts five years or longer with only 20% likely to develop recurrence. Death from pre-existing conditions is more likely than from EC. No evidence supports FU improving long-term survival or quality of life. Alternative FU needs consideration. The aim of this thesis was to explore current post-treatment FU models for women with H-I and H-R EC to: - Understand the current model of patient care in addressing survivorship issues. - Identify deficiencies in post-treatment care. - Make recommendations that support optimal care based on women's perspectives and needs. A sequential explanatory mixed methods study was conducted in two phases to: examine patterns of care and disease outcomes; explore the extent to which the current model of care 1) meets women’s physical and emotional needs; 2) addresses survivorship issues. Phase 1: A retrospective case audit was conducted of women referred for adjuvant radiation treatment between 2004 and 2014 who subsequently recurred. Data were analysed using descriptive statistics. Phase 2 recruited women without evidence of disease, attending medically-led FU. Purposive sampling targeted a range of experiences post-treatment. Semi-structured interviews were analysed using inductive thematic approach. Quantitative data results revealed of 786 women referred, 19% developed recurrence. Most (63%) had at least two pre-existing comorbidities. Few notes (9%) documented lifestyle discussions. A third (31%) experienced mild/moderate treatment-related side-effects. Most notes (84%) contained no references to emotional status; few (12%) contained exercise recommendations; few (17%) for those working pre-treatment indicated return to work discussions; seven documented nursing consultation. Most recurrence (87%) occurred within three years post-surgery, 70% was symptomatic. Although treating clinicians detected 59% of recurrences, only 46% were during scheduled FU. The majority (59%) had multi-focal recurrence and poor outcomes. Two years post-treatment for recurrence, 31% were alive, 15% without evidence of disease. Eleven survived four years. Analysis of 25 interviews yielded four themes: ‘The safe haven of FU’; ‘Fear of cancer recurrence’ (FOR); ‘It is more than absence of cancer’; ‘Attitudes and relationships to health care professionals’. Women reported little preparation for survivorship. FU focused on physical symptoms; recurrence detection; treatment toxicity. Attending FU both escalated and alleviated FOR. Generally emotional needs were unmet. Health promotion and practical support toward making lifestyle changes was absent. Women valued specialist-led FU and ongoing connection with them. Women perceived limited contact with nurses in FU. Nurse-led care could provide for unmet needs, including emotional and healthy lifestyle support. In conclusion, this thesis indicates the current model is effective in dealing with medical issues from a disease perspective but is inefficient. In 70% of cases recurrence detection was from symptomatic disease rather than FU. For many, the current model is burdensome and does not comprehensively address survivorship issues. Findings indicate revision of national EC FU guidelines, and reforming EC survivorship care models as needed. Shifting the focus of FU towards addressing women’s post-treatment experiences is overdue. Specialist nurse-led FU should be considered.
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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.