Of the 34,000 children who die annually, over 28,000 are four years old or younger. Nurses working in pediatric intensive care units (PICU) provide end of life (EOL) care before, during, and after death of these children. The purpose of this study was to determine thesuggestions PICU nurses have for improving EOL care for dying pediatric patients and their families. A sample of 1047 PICU nurses, who were members of the American Association of Critical-Care Nurses (AACN), were sent a 70-item questionnaire. One open ended item asked nurses to offer a suggestion for improving EOL care for dying PICU patients. Responses were received from 235 of the 474 (49.6%) nurses who returned the questionnaire. Eight themes were identified: (1) providing a better environment; (2) physician honesty about prognosis; (3) having a plan for dying; (4) ending futile care; (5) physicians on "same page;" (6)having more staff; (7) receiving more EOL education; and, (8) providing better pain control. Patient centered principles begin with creating an environment that allows the dying process to be centered on the family while fostering dignity. Fostering dignity includes providing an environment that is conducive to supporting quality EOL care. The importance of providing privacy and an appropriate place for the patient and family to feel more comfortable during the dying process was suggested. The need for better communication between providers and families, ending suffering, and having enough staff to support a "good death," were also high priorities. PICU nurses overwhelmingly suggested that the environment in which health care workers monitor, care for, and support patients and families during death is thegreatest area for improvement. Unit design teams need to assure that care areas for dying pediatric children are created to accommodate a dignified and peaceful passing to improve pediatric End-of-Life Care.

The focus of this study is to explore and examine the views and feelings of United States documented and undocumented immigrants on their final resting place after death, posthumous repatriation, whether there is a need for repatriation, and if a lack of such need is preventing immigrant groups from remaining in the United States and benefiting from end-of-life services such as hospice. A quantitative research method was utilized. The use of a quantitative research method allowed for an expansive look into the use of posthumous repatriation and its effect on hospice use by immigrants. Data were obtained from multiple locations that serve and cater to specific ethnic groups within the region of the Inland Empire in Southern California. Sixty-three immigrants who identified themselves as persons born in a country outside the United States are the sample. This study produced evidence that family plays a major role in end-of-life decisions and argues the need of repatriation by immigrant groups as a potential reason for the underutilization of hospice services. The guarantee of return to their country of origin after death produced greater inclination to use hospice.

Currently in the United States, five states have enacted physician-assisted suicide as a legal end of life option for terminal patients. Research indicates that most patients who have died under this mean have been enrolled in hospice services. With the recent enactment of California’s End of Life Option Act, hospice social workers will find themselves educating and assisting patients and/or their families with this and other end of life decisions. Research has thoroughly examined physician and nurses’ involvement and attitude in the matter, but little has been researched regarding social workers. This study aimed to identify the factors that affect hospice social workers’ attitude towards physician-assisted suicide and how California’s End of Life Option Act affects their practice. In-depth face-to- face interviews with 8 hospice social workers were conducted. The study found that all 8 participants held positive attitudes towards physician-assisted suicide, support the End of Life Option Act, and feel prepared to assist patients and handle requests for the End of Life Option. Factors such as social work values and professional experience have a positive effect and validate their attitude, and factors such as religion does not affect their attitude. Due to low participation, the overall results were limited; therefore, additionally research should be extensively conducted to gain a better understanding. Regardless, a structured physician-assisted suicide protocol for social workers would benefit micro practice and macro developments.

ABSTRACT Botanic Garden User Outcomes: A Means-End Investigation Christopher Lee Wassenberg This study explored the outcomes that Leaning Pine Arboretum users experience from visiting the botanic garden. Understanding visitor motivations and benefits has been a focus in the field of outdoor recreation, and the subject of a number of botanic garden and green space visitor studies. Previous studies have found that visiting a botanic garden can serve as a coping strategy for dealing with and reducing life stress (Holbrook, 2010; Kohlleppel, Bradley, & Jacob, 2002; Maller, Townsend, Pryor, Brown, & St Leger, 2005) and that visiting public outdoor green spaces led visitors to experience greater exposure to natural spaces and to have meaningful experiences with others (Burgess, Harrison, & Limb, 1988). This study employed means-end theory (Gutman, 1982) to investigate the link between garden attributes and user outcomes. In-person interviews were conducted with 83 garden visitors during the summer of 2011. Researchers coded the interview data to identify participants’ reported attributes, consequences, and values. Intercoder reliability was conducted to ensure validity of the results. Coded data were entered into the Laddermap (Gengler & Reynolds, 1995) computer software program to be analyzed. Implication matrixes were created to determine the number of times concepts were linked. From the implication matrixes, hierarchical value maps (HVMs) were developed to display the results graphically. HVMs show the strength of links between attributes, consequences, and values, and were used to compare results from different visitor groups within the study. These groups included males and females, students and non-students, and first time and return visitors. The findings revealed that participants felt that the botanic garden and plants were the most meaningful garden attributes. These garden attributes led participants to experience the consequences new experiences and learning stress and relief and relaxation. Having experienced these meaningful consequences allowed participants to reach the most frequently mentioned values: transference and improved quality of life. The study found important links between attributes, consequences, and values, including the consequences escape and stress relief and relaxation, and the consequence new experiences and learning, and the value transference. Important differences were also found between the attribute, consequence, and value chains of multiple visitor groups. Botanical garden and arboretum mangers may use this study to improve visitor experiences and outcomes. A better understanding of visitor benefits and outcomes can help managers understand the needs of current visitors, potential visitors, and potential garden supporters. In turn, garden visitors who have better experiences may be more inclined to provide funding or other support to conserve and preserve their local gardens. Based on the results garden managers should maintain a broad range of healthy, well-displayed plants; exert high-levels of detail to all aspects of garden operations; continue to provide opportunities for full visitor immersion; and offer unified, accessible interpretation of garden spaces and plants. Additionally, these results may be used to validate funding requests and guide allocation of funding. Keywords: Botanic garden users, outcomes, means-end theory, Leaning Pine Arboretum

Swedish municipalities invest enormous amounts of resources in health information systems (HIS) in order to have a competitive edge, reduce cost in operations, faster storage and retrieval of patient information, foster transparency, efficiency and effectiveness in service delivery. This study examines the major challenges faced by the system end-users after the implementation of the new health information systems in the elderly and care homes in a municipality in a southern region of Sweden.  The rationale for the examination is derived from the discovery that the municipality is yet to fully utilize the new-HIS, despite huge investments in procurement, supervision and training of users.  The major reason why this topic was chosen was due to the challenges encountered while working as a care giver staff in one municipality in a southern region of Sweden. In this study, The technology acceptance model (TAM ) is used to better understand the current working of the new-HIS.   Mixed methods are utilized to conduct the case study; semi structured interviews and questionnaire survey. The findings of this study are presented in the findings chapter and have shown many shortcomings in the use of the new-HIS such as limited supervision from top management, inadequate skills, inadequate computers, long procedures thus time wasting, insufficient resources like financing and policies among others as further discussed in the research findings chapter in this report.  Finally, this study proposes the findings as contributions to the study of challenges faced by end-users after the introduction and reception of the new-HIS by the given case study; and it propagates share of experiences and lessons to be learned.

Background: Losing an infant is difficult for parents to face. To improve EOL care for dying neonates and their families, NICU nurses need to overcome obstacles and implement supportive behaviors. Understanding the size of obstacles and supportive behaviors will better enable NICU nurses to provide quality EOL care. Objectives: To determine the largest obstacles and supportive behaviors in NICU EOL care. Methods: A descriptive quantitative study of a random national sample of 1058 NICU nurses who were members of NANN (National Association of Neonatal Nurses). The National Survey of NICU Nurses' Perceptions of End-of-Life Care questionnaire was mailed twice yielding 234 usable questionnaires for a response rate of 26%. Results: Three themes emerged in the top rated obstacles: (a) obstacles related to families, (b) obstacles regarding language and communication, and (c) obstacles concerning ethical dilemmas. The lowest rated obstacles were nurses believing that life-saving measures/treatments were prematurely discontinued and unit visiting hours being too liberal. The top eight supportive behaviors included helping families cope with the infant's death and those involving helpful physician behaviors. Lowest rated supportive behaviors were those related to the nurses' own family death experience and behaviors promoting nurse convenience. Conclusions: Obstacles and supportive behaviors for NICU EOL care have been identified. Issues regarding families, communication, and ethical dilemmas need to be addressed. Efforts should be made to more quickly align the plan of care with the projected outcome to limit both infant suffering and nurse distress from inappropriate use of life-extending measures.

PhD / Introduction Kidney transplantation confers both survival and quality of life advantages over dialysis for most people with end-stage kidney disease (ESKD). The mortality rate on dialysis is 10-15% per year, compared with 2-4% per year post-transplantation. Short-term graft survival is related to control of the acute rejection process, requiring on-going immunosuppression. Most current immunosuppressive algorithms include one of the calcineurin inhibitors (CNI: cyclosporin or tacrolimus), an anti-metabolite (azathioprine or mycophenolate) and corticosteroids, with or without antibody induction agents (Ab) given briefly peri-transplantation. Despite this approach, between 15-35% of recipients undergo treatment for an episode of acute rejection (AR) within one year of transplantation. Transplantation is not without risk, and relative mortality rates for kidney recipients after the first post-transplant year remain 4-6 times that of the general population. Longer-term transplant and recipient survival are related to control of chronic allograft nephropathy (rooted in the interplay of AR, non-immunological factors, and the chronic nephrotoxicity of CNI) and limitation of the complications of chronic ESKD and long-term immunosuppression: cardiovascular disease, cancer and infection, which are responsible for 22%, 39% and 21% of deaths respectively. This thesis is presented as published works on the theme of immunosuppression and cancer after kidney transplantation. The work presented in the first chapters of this thesis has striven to identify, evaluate, synthesise and distil the entirety of evidence available of new and established immunosuppressive drug agents through systematic review of randomised trial data, with particular emphasis on quantifying harms of treatment. The final chapters use inception cohort data from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA), which is first validated then used to explore the risk of cancer in more detail than was possible from trial data alone. Interleukin 2 receptor antagonists Interleukin-2 receptor antagonists (IL2Ra, commercially available as basiliximab and daclizumab) are humanised or chimeric IgG monoclonal antibodies to the alpha subunit of the IL2 receptor present only on activated T lymphocytes, and the rationale for their use has been as induction agents peri-transplantation. Introduced in the mid-1990s, IL2Ra use has increased globally, and by 2003 38% of new kidney transplant recipients in the United States and 25% in Australasia received an IL2Ra. This study aimed to systematically identify and synthesise the evidence of effects of IL2Ra as an addition to standard therapy, or as an alternative to other induction agents. We identified 117 reports from 38 randomised trials involving 4893 participants. Where IL2Ra were compared with placebo (17 trials; 2786 patients), graft loss was not different at one (Relative Risk -RR 0.84; 0.64 to 1.10) or 3 years (RR 1.08; 0.71 to1.64). AR was reduced at 6 months (RR 0.66; 0.59 to 0.74) and at 1 year (RR 0.66; 0.59 to 0.74) but cytomegalovirus (CMV) disease (RR 0.82; CI 0.65 to 1.03) and malignancy (RR 0.67; 0.33 to1.36) were not different. Where IL2Ra were compared with other antibody therapy no significant differences in treatment effects were demonstrated, but IL2Ra had significantly fewer side effects. Given a 40% risk of rejection, 7 patients would need treatment with IL2Ra in addition to standard therapy, to prevent 1 patient having rejection, with no definite improvement in graft or patient survival. There was no apparent difference between basiliximab and daclizumab. Tacrolimus versus cyclosporin for primary immunosuppression There are pronounced global differences in CNI use; 63% of new kidney transplant recipients in the USA but only 22% in Australia receive tacrolimus as part of the initial immunosuppressive regimen. The side effects of CNI differ: tacrolimus is associated more with diabetes and neurotoxicity, but less with hypertension and dyslipidaemia than cyclosporin, with uncertainty about equivalence of nephrotoxicity or how these relate to patient and graft survival, or impact on patient compliance and quality of life. This study aimed to systematically review and synthesise the positive and negative effects of tacrolimus and cyclosporin as initial therapy for renal transplant recipients. We identified 123 reports from 30 randomised trials involving 4102 participants. At 6 months graft loss was reduced in tacrolimus-treated recipients (RR 0•56; 0•36 to 0•86), and this effect persisted for 3 years. The relative reduction in graft loss with tacrolimus diminished with higher levels of tacrolimus (P=0.04), but did not vary with cyclosporin formulation (P=0.97) or cyclosporin level (P=0.38). At 1 year, tacrolimus patients suffered less AR (RR 0•69; 0•60 to 0•79), and less steroid-resistant AR (RR 0•49; 0•37 to 0•64), but more insulin-requiring diabetes (RR 1•86; 1•11 to 3•09), tremor, headache, diarrhoea, dyspepsia and vomiting. The relative excess in diabetes increased with higher levels of tacrolimus (P=0.003). Cyclosporin-treated recipients experienced significantly more constipation and cosmetic side-effects. We demonstrated no differences in infection or malignancy. Treating 100 recipients with tacrolimus instead of cyclosporin for the 1st year post-transplantation avoids 12 suffering acute rejection and 2 losing their graft but causes an extra 5 to become insulin dependent diabetics, thus optimal drug choice may vary among patients. Target of rapamycin inhibitors for primary immunosuppression Target of rapamycin inhibitors (TOR-I) are among the newest immunosuppressive agents and have a novel mode of action but uncertain clinical role. Sirolimus is a macrocyclic lactone antibiotic and everolimus is a derivative of sirolimus. Both prevent DNA synthesis resulting in arrest of the cell cycle. Animal models suggested TOR-I would provide synergistic immunosuppression when combined with CNI, but early clinical studies demonstrated synergistic nephrotoxicity. Since then diverse trials have explored strategies that avoid this interaction and investigated other potential benefits. The aim of this study was to systematically identify and synthesise available evidence of sirolimus and everolimus when used in initial immunosuppressive regimens for kidney recipients. We identified 142 reports from 33 randomised trials involving 7114 participants, with TOR-I evaluated in four different primary immunosuppressive algorithms: as replacement for CNI, as replacement for antimetabolites, in combination with CNI at low and high dose, and with variable dose of CNI. When TOR-I replaced CNI (8 trials, 750 participants), there was no difference in AR (RR 1.03; 0.74 to 1.44), but creatinine was lower (WMD -18.31 umol/l; -30.96 to -5.67), and bone marrow more suppressed (leucopoenia RR 2.02; 1.12 to 3.66, thrombocytopenia RR 6.97; 2.97 to 16.36, anaemia RR 1.67; 1.27 to 2.20). When TOR-I replaced antimetabolites (11 trials, 3966 participants), AR and CMV were reduced (RR 0.84; 0.71 to 0.99 and RR 0.49; 0.37 to 0.65) but hypercholesterolaemia was increased (RR 1.65; 1.32 to 2.06). When low was compared to high-dose TOR-I, with equal CNI dose (10 trials, 3175 participants), AR was increased (RR 1.23; 1.06 to 1.43) but GFR higher (WMD 4.27 ml/min; 1.12 to 7.41). When low-dose TOR-I and standard-dose CNI were compared to higher-dose TOR-I and reduced CNI AR was reduced (RR 0.67; 0.52 to 0.88), but GFR also reduced (WMD -9.46 ml/min; -12.16 to -6.76). There was no significant difference in mortality, graft loss or malignancy risk demonstrated for TOR-I in any comparison. Generally surrogate endpoints for graft survival favoured TOR-I (lower risk of acute rejection and higher GFR) and surrogate endpoints for patient outcomes were worsened by TOR-I (bone marrow suppression, lipid disturbance). Long-term hard-endpoint data from methodologically robust randomised trials are still needed. Monoclonal and polyclonal antibody therapy for treating acute rejection Strategies for treating AR include pulsed steroids, an antibody (Ab) preparation, the alteration of background immunosuppression, or combinations of these options. In 2002, in the USA 61.4% of patients with AR received steroids, 20.4% received Ab and 18.2% received both. The Ab available for AR are not new: horse and rabbit derived polyclonal antibodies (ATG and ALG) have been used for 35 years, and a mouse monoclonal antibody (muromonab-CD3) became available in the late 1980s. These preparations remove the functional T-cell population from circulation, producing powerful saturation immunosuppression which is useful for AR but which may be complicated by immediate toxicity and higher rates of infection and malignancy. The aim of this study was to systematically evaluate and synthesise all evidence available to clinicians for treating AR in kidney recipients. We identified 49 reports from 21 randomised trials involving 1394 participants. Outcome measures were inconsistent and incompletely defined across trials. Fourteen trials (965 patients) compared therapies for 1st AR episodes (8 Ab versus steroid, 2 Ab versus another Ab, 4 other comparisons). In treating first rejection, Ab was better than steroid in reversing AR (RR 0.57; CI 0.38 to 0.87) and preventing graft loss (RR 0.74; CI 0.58 to 0.95) but there was no difference in preventing subsequent rejection (RR 0.67; CI 0.43 to 1.04) or death (RR 1.16; CI 0.57 to 2.33) at 1 year. Seven trials (422 patients) investigated Ab treatment of steroid-resistant rejection (4 Ab vs another Ab, 1 different doses Ab, 1 different formulation Ab, 2 other comparisons). There was no benefit of muromonab-CD3 over ATG or ALG in reversing rejection (RR 1.32; CI 0.33 to 5.28), preventing subsequent rejection (RR 0.99; CI 0.61 to 1.59), graft loss (RR 1.80; CI 0.29 to 11.23) or death (RR 0.39; CI 0.09 to 1.65). Given the clinical problem caused by AR, comparable data are sparse, and clinically important differences in outcomes between widely used interventions have not been excluded. Standardised reproducible outcome criteria are needed. Validity of cancer data in an end stage kidney disease registry Registries vary in whether the data they collect are given voluntarily or as a requirement of law, the completeness of population coverage, the breadth of data collected and whether data are assembled directly or indirectly through linkage to other databases. Data quality is crucial but difficult to measure objectively. Formal audit of ANZDATA cancer records has not previously taken place. The aim of this study was to assess agreement of records of incident cancer diagnoses held in ANZDATA (voluntary reporting system) with those reported under statute to the New South Wales (NSW) state Central Cancer Registry (CCR), to explore the strengths and weaknesses of both reporting systems, and to measure the impact of any disagreement on results of cancer analyses. From 1980-2001, 9453 residents received dialysis or transplantation in NSW. Records from ANZDATA registrants were linked to CCR using probabilistic matching and agreement between registries for patients with 1 or more cancers, all cancers and site-specific cancer was estimated using the kappa-statistic (κ). ANZDATA recorded 867 cancers in 779 (8.2%) registrants; CCR 867 cancers in 788 (8.3%), with κ =0.76. ANZDATA had sensitivity 77.3% (CI 74.2 to 80.2), specificity 98.1% (CI 97.7 to 98.3) if CCR records were regarded as the reference standard. Agreement was similar for diagnoses whilst receiving dialysis (κ =0.78) or after transplantation (κ =0.79), but varied by cancer type. Melanoma (κ =0.61) and myeloma (κ =0.47) were less good; lymphoma (κ =0.80), leukaemia (κ =0.86) and breast cancer (κ =0.85) were very good. Artefact accounted for 20.8% non-concordance but error and misclassification did occur in both registries. Cancer risk did not differ in any important way whether estimated using ANZDATA or CCR records. Quality of cancer records in ANZDATA are high, differences largely explicable, and seem unlikely to alter results of analyses. Risk of cancer after kidney transplantation Existing data on the magnitude of excess risk of cancer across different kidney recipient groups are sparse. Quantifying an individual transplant candidate’s cancer risk informs both pre-transplant counselling, treatment decisions and has implications for monitoring, screening and follow-up after transplantation. The aims of this study were firstly to establish the risk of cancer in the post-transplant population compared to that experienced by the general population, and secondly to quantify how excess risk varied within the transplanted population, seeking to establish meaningful absolute risk estimates for post-transplant cancer based on unalterable recipient characteristics known a priori at the time of transplantation. 15,183 residents of Australia and New Zealand had a transplant between 1963 and 2004, and were followed for a median of 7.2 years (130,186 person-years), with 1642 (10.8%) developing cancer. Overall, kidney recipients had 3 times the cancer risk, with risk inversely related to age (Standardised Incidence Ratio of 15 to 30 in children reducing to 2 in people > 65 years). Female recipients aged 25 -29 had rates of cancer (779.2/100,000) equivalent to women aged 55 - 59 from the general population. The risk pattern of lymphoma, colorectal and breast cancer was similar to the overall age trend, melanoma showed less variability across ages and prostate cancer showed no risk increase. Within the transplanted population cancer risk was affected by age differently for each sex (P=0.007), and was elevated for recipients with prior non-skin malignancy (Hazard Ratio: HR 1.40; 1.03 to 1.89), of white race (HR 1.36; 1.12 to 1.89), but reduced for those with diabetic ESKD (HR 0.67; 0.50 to 0.89) Rates of cancer in kidney recipients were similar to non-transplanted people 20 -30 years older, but risk differed across patient groups. Men aged 45 - 54 at transplantation with graft function at 10 years had a risk of cancer that varied from 1 in 13 (non-white, diabetic ESKD, no prior cancer) to 1 in 5 (white, prior cancer, ESKD from other causes).

This thesis is concerned with temporal factors from the perspective of the interactive designer/interface designer and usability as a construct for guiding design activity. The research reported herein examines the many factors which emerge when considering the name of interaction at the user interface. Temporal Aspects of Usability (TAU) is presented as a multivariate construct. It is neither a property that exists 'in the head alone' not is it an aspect of the system but rather an emergent property arising from task based interactions. From a theoretical perspective, it is argued that the inclusion of temporal considerations to the task model more fully specifies 'Usability' as a design construct. A model of TAU is evolved and validated utilizing situated interviews with designers. This resulted in an Enhanced model of TAU. A method for developing temporally informed task models, KAT-LITTER (Leveraging Interactions Through Effective Responses), provides temporal design heuristics as the confluence of, KAT (Knowledge Analysis of Task) a task analysis method, and the enhanced TAU model. As a method, KAT-LITTER is device independent, data centered, domain specific and necessarily independent of existing implementations. A process evaluation of KAT-LITTER showed that it influenced the design process in two significant ways: firstly, designers using KAT-LITTER spent more time reasoning about temporal issues than designers using KAT alone, and secondly these same designers considered a broader spectrum of temporal issues. The development of TAU, its accompanying method, KAT-LITTER, complete with a notational system for analysis represent a significant step forward.

Thesis (M.S.)--University of Nevada, Reno, 2005. / "December, 2005." Includes bibliographical references (leaves 73-77). Online version available on the World Wide Web.

Thesis (M.S.)--Oregon State University, 2008. / Printout. Includes bibliographical references (leaves 35-37). Also available on the World Wide Web.