Nursing - Theses
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The experiences of pain for hospitalised children following Haematopoietic Stem Cell Transplantation
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.
Bedtime Stories: An exploratory study of the reasons for, experience and impact of, sleep disturbance for children with cerebral palsy and their parents
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.
Clowns in the midst: understanding clown doctors at The Royal Children's Hospital Melbourne
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.
Memory-making in neonatal end-of-life care
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.
Procedural pain assessment in infants and young children: identifying a suitable behavioural assessment scale
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.
Modelling residential aged care in Australia: entry and exit
Ageing of the Australian population affects the residential aged care system, yet the structure and dynamics of the system remain uncertain. A comprehensive model of residential care based on the individual perspective of residential aged care events is missing. Thus, older Australians, government and care providers have only a limited model of aged care actions. This study uses big administrative unit record data on aged care assessments (ACAP), aged care appraisals (ACFI) and unit record survey data (SDAC) to identify factors associated with aged care events in older persons’ trajectories towards and through residential care. To achieve this goal and broaden understanding of Australian residential care, this study uses the following steps: (1) modelling of the probability of entry to and exit from residential care, with a multi-state model of transitions between levels of care needs; (2) modelling the applications for aged care and approvals for entry to residential care; (3) derivation of transition and mortality assumptions for individual care needs that can be used in a projection model; (4) estimation of life expectancy in residential care based on needs for assistance; and (5) assessing the quality of Australian data on aged care for statistical modelling and projections of residential care demand. The results show that health factors, above all needs for assistance, determine the speed and direction of a person’s progression towards institutional care. Probabilities of aged care events, transition rates and life expectancy estimates, derived in this study, provide a comprehensive picture of Australian residential aged care. These findings are expected to have important implications for residential aged care policies in Australia in terms of having better understanding and more accurate predictive power for the future of aged care.
Asymptomatic thrombosis following the use of central venous catheters in children
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.
An exploration of the nursing role in a telehealth based stroke secondary prevention program
This research study set out to explore a specialist nursing role in the field of Telehealth for chronic disease management. This study aimed to explore the role of the nurse through measurement of nursing activity during the one-year period of participant follow-up. The study aimed to effect long-term secondary prevention of stroke through an evidence based approach to the management of modifiable cardiovascular risk factors and post stroke depression in the community setting. Research suggests that up to 80% reduction of risk of successive stroke can be achieved if recommendations from evidence-based guidelines are implemented. Notwithstanding these findings a gap exists in the implementation of preventative strategies for stroke survivors in the community. Results from previous research indicate that Telehealth is cost effective and potentially may significantly reduce socioeconomic burden and the probability of successive stroke. A small number of studies have highlighted potential mechanisms through which Telehealth can benefit the stroke survivor, carers, families and health professionals. Researchers have recommended more research into Telehealth in order to develop and to define effective interventions. A pilot randomised controlled trial (RCT) conducted at two metropolitan hospitals showed positive results in risk factor and depression outcomes. Integral to this model of care was the role of the nurse. In the current nurse-led, nested multicentre RCT, study nurses gained increased telephone access, to follow-up and support stroke survivors and their General Practitioners. There were 93 participants (43 intervention) recruited from four metropolitan hospitals over a period of two years. Nursing staff were integrated with the multidisciplinary team in designated stroke centres and General Practitioners in the community. Specialists were available to participate in shared care. Telephone follow-up was initially attenuated by risk for second stroke, with high-risk individuals receiving a greater frequency of follow-up. The results indicated that nurses engaged in both fundamental nursing process and advanced activities to assist stroke survivors through transitions across the health landscape after stroke. Case management, assessment and care planning were frequent fundamental activities and occupied a relatively large percentage of the nurse’s time. The mean difference in outcome systolic blood pressure was significantly improved in the intervention group. The mean difference in post stroke depression screening score was significantly better for the intervention group. Lifestyle modification in particular physical activity was better in the intervention group. The results add support to the place of nursing in the ongoing care of stroke survivors in the community setting.
Self-treatment of wounds: a mixed methods study
A chronic wound is a disruption of the structure and function of the skin associated with protracted healing. Chronic wounds affect 2% of Australians and cost US$2.85 billion per annum. Chronic wounds have a negative effect on the physical, emotional, social, lifestyle and financial domains of quality of life. Wound treatment involves wound assessment, wound cleansing, debridement of devitalised tissue and the application of wound dressings. Individuals often seek professional services for wound treatment, however the researchers experience and some published evidence suggests that patients sometimes self-treat. Successful self-treatment of chronic wounds has the potential to improve wound healing and the individual’s well-being. A self-care approach to wound treatment may also help to relieve pressure on healthcare services and reduce the economic burden of this condition. The aim of this research was to investigate self-treatment of chronic wounds among people living in the community to inform the development of educational resources and supports for this group. The objectives of this research were to describe the characteristics of people who self-treat, to determine their self-treatment practices and to explore the effect of self-treatment on quality of life. A sequential explanatory design mixed methods study was conducted in Australia and Wales. Data collection involved participants completing one survey (n=113), and a sub-group of the sample completed one in-depth interview (n=25), and one observation of their self-treatment (n=8). The sample was 63.6 years of age on average, self-treated wounds that were 109 weeks duration on average and more than three quarters (n=89, 78.8%) had a leg wound. Health-related quality of life was sub-optimal, 6/10 (ave.) according to the Cardiff Wound Impact Schedule. The majority of self-treaters reported conducting wound cleansing (n=103, 91.2%), wound dressing removal (n=101, 89.4%), wound dressing application (n=100, 88.5%), and wound assessment (n=94, 83.2%). Wound imaging (n=38, 33.6%) and wound debridement (n=46, 40.7%) were conducted by less than half of the sample. The most common reasons for self-treating were to be independent (n=66, 58.4%) and to do the treatment at a time that suited (n=62, 56.6%). Few self-treaters reported receiving structured education to assist them to self-treat (n=6, 5.3%). Self-treaters had spent on average AU$2475 on wound dressing products since the wound started, and AU$121.82 in the most recent 4 weeks which represented 12% of their disposable income. Observations of self-treatment identified that participants conducted the above mentioned self-treatment activities however often not in the most effective manner. The interviews conducted in this study suggested that the effect of self-treatment on quality of life was mainly positive, in particular it improved pain, reduced worry about infection, had financial benefits, and allowed the individual to recapture time lost when receiving professional care. This research has demonstrated the need to develop educational resources and supports for people who self-treat chronic wounds. These resources should include a tool to appraise self-treatment capacity and an e-learning education program to teach patients and their significant other how to self-treat. These resources also have the potential to guide and standardise the practices of healthcare professionals who educate and support self-treaters, and encourage a shared care approach to this self-treatment practice.
Missed nursing care - a nurse's perspective: an exploratory study into the who, what and why of missed care
BACKGOUND: Exploration of missed or delayed nursing care has become increasingly prevalent in international nursing literature over the past ten years. Evidence demonstrates that missed nursing care, or care that is left undone or passed on to the following shift, is common and the factors that lead to missed care are complex and numerous. Critically, patients report poorer experiences of care in hospitals where more nursing care is left undone. Despite strong international evidence, there has been little research to explore missed nursing care in Australia, and no papers focusing specifically on missed nursing care in the cancer setting. The aims of this study were to (i) explore nurses’ perceptions of what care is missed in one haematology/oncology in-patient setting in Victoria, Australia, and (ii) to identify factors contributing to missed care. METHODS: This study employed an exploratory mixed-methods approach that included an on-line survey of nurses’ views of missed care and factors leading to missed care, a description of the environment of care during the data collection period, and focus groups to explore, in depth, factors nurses believe result in missed care. RESULTS: Survey data were collected from 17 of 50 eligible nurses (34%) working on a haematology/oncology ward over a three week period in September, 2015. During the data collection period, 103 patients were cared for on the ward. The most common areas of missed care reported were: talking to patients (n=15, 88.2%), developing and updating nursing care plans (n=13, 76.5%), and educating patients and family (n=11, 64.7%). Data from the focus groups indicated acute awareness of missed care and multiple factors leading to missed care were identified. These included staff skill mix, organisation of nursing work, and non-nursing duties that detracted from time with patients. During the focus groups, nurses described considerable discomfort at being unable to provide emotional care they wanted to deliver to patients and their families. They also talked about the inability to take care of themselves. CONCLUSION: This preliminary, exploratory study offers an insight into missed nursing care and its consequences on patients and nurses in one Australian cancer setting. Data reflect the findings of earlier international studies and indicated potentially modifiable factors for reduction of missed nursing care. Multi-site research is needed to further explore missed care in cancer settings to better understand and make recommendations for optimal environments of care, caring and staff wellbeing.
How do patients with lung cancer experience radiation induced oesophagitis?
Patients with lung cancer who receive radiotherapy to their chest may experience the specific treatment toxicity of radiation induced oesophagitis (RIO) if the oesophagus is included in the radiotherapy treatment field. RIO causes significant pain and distress to patients. There is a lack of evidence to guide appropriate management. There is also a lack of information on how patients experience this toxicity. This qualitative, exploratory study examined the experience of RIO described by patients with lung cancer who received RT to the chest, either alone or in combination with chemotherapy. The aims of this project were to: • identify the properties and characteristics of RIO as experienced by the patient having radiotherapy to the chest for lung cancer, • understand how these properties and characteristics change over time, • understand the patient experience of ongoing symptoms following completion of radiotherapy, • identify aspects of the RIO experience amenable to nursing interventions that will assist in the management of RIO and, • establish research questions to test specific nursing interventions for RIO. The Theory of Unpleasant Symptoms (TOUS) was chosen as the conceptual framework for the development of the semi-structured interviews and analysis. Two cohorts of patients were recruited to address the research questions used in this study. Cohort 1 consisted of patients who were actively receiving cancer treatment and experiencing RIO. This cohort provided insight into the experience of RIO in the acute setting, including onset and progression. Cohort 2 consisted of patients who completed treatment for primary lung cancer within the last six months and who experienced Grade 3 RIO at some stage during their treatment. Cohort 2 provided insight into the recovery trajectory following RIO, including long term changes. Semi-structured patient interviews were used to capture the patients experience and recovery of RIO. The interviews sought to identify the properties and characteristics of the pain and swallowing difficulties as described by all patients as well as other relevant features of the experience. Content analysis was used to analyse interview data. Four patient stories were chosen from the interviews to illustrate the overall experience of RIO and recovery as a means of providing context to the findings of this study. These vignettes illustrate the increasing impact on daily life as the severity of RIO increased. The extracted statements identified from the interviews were organised into the four central predetermined categories to describe the experience of RIO: (1) pain, (2) swallowing, (3) management and (4) the impact or bother of the experience of RIO. TOUS provided a framework to capture the symptom dimensions of quality, intensity, duration and associated distress of RIO for each of these categories as experienced by the patients. The patient statements extracted from the interviews were organised into four categories to describe the experience of recovery from Grade 3 RIO. The four categories were (1) memory of pain and swallowing difficulties, (2) time to recovery, (3) long term effects on swallowing and (4) advice for future patients. New knowledge of RIO gained from this study shows that experience changes across the trajectory of RIO, that pain and swallowing are inter-related and require combined therapeutic approaches and that while healing occurs, some swallowing difficulty can persist for some patients.
Effectiveness of Primary Health Care Services in New Zealand for Minority Refugee Populations: A Case Study of Bhutanese Refugee Women
A significant number of people have been displaced from their country of origin and become refugees, mostly due to armed conflicts, political violence and human rights abuse. Refugees’ traumatic past and uncertain future, together with complex health needs, present significant challenges for resettlement in their host country. Bhutanese refugees are Bhutanese citizens of Nepali origin. During 1991–1992, more than 100,000 Nepali- Bhutanese became refugees. After spending more than 18 years in refugee camps in Nepal, most of these refugees have now been resettled in various countries including New Zealand and Australia. The aim of this thesis is to examine the effectiveness of primary health care services in meeting the health needs of Bhutanese refugee women resettled in New Zealand. The conceptual framework of this study was guided by the globally accepted philosophy and principles underpinning the Declaration of Alma-Ata for Primary Health Care and the Ottawa Charter for Health Promotion. This qualitative exploratory study was conducted in two phases; the first phase comprised focus group discussions with 32 Bhutanese women and eight Bhutanese men; and the second phase involved individual interviews with 12 health service providers including four general practitioners, five nurses and three midwives. All focus groups with the Bhutanese sample were completed in Nepali, and were later transcribed in Nepali and translated to English. Phase one of the study revealed that resettlement in New Zealand had mixed impacts on Bhutanese women’s health. In general, there had been an improvement in physical health, however, their self-esteem and overall mental health status had deteriorated due to compounding stressors related to their traumatic refugee journey as well as resettlement challenges that they had been enduring. In addition, these women faced a number of barriers in accessing and utilising health services in New Zealand. In phase two of the study, health professionals identified common attributes of Bhutanese women that could impact positively or negatively in addressing their health needs and articulated a number of challenges and some enablers in addressing their health needs. Overall, the findings of this study have revealed that there have been inadequacies and constraints in the provision of culturally safe and effective primary health care services to Bhutanese refugee women and provide evidence for recommendations to address these inadequacies. These findings demonstrated that although New Zealand has had a powerful and enduring primary health care policy commitment, there are limitations in the implementation of this policy in practice. While this study was undertaken with one specific group of people, the results are likely to be transferrable to other minority refugee populations. It is anticipated that the results of this study will contribute in planning and implementing future strategies to better address the health needs of minority refugee populations in New Zealand.