880 resultados para Multiple sclerosis - Patients - Family relationships


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As family history has been established as a risk factor for prostate cancer, attempts have been made to isolate predisposing genetic variants that are related to hereditary prostate cancer. With many genetic variants still to be identified and investigated, it is not yet possible to fully understand the impact of genetic variants on prostate cancer development. The high survival rates among men with prostate cancer have meant that other issues, such as quality of life (QoL), have also become important. Through their effect on a person’s health, a range of inherited genetic variants may potentially influence QoL in men with prostate cancer, even prior to treatment. Until now, limited research has been conducted on the relationship between genetics and QoL. Thus, this study contributes to an emerging field by aiming to identify certain genetic variants related to the QoL found in men with prostate cancer. It is hoped that this study may lead to future research that will identify men who have an increased risk of a poor QoL following prostate cancer treatment, which will aid in developing treatments that are individually tailored to support them. Previous studies have established that genetic variants of Vascular Endothelial Growth Factor (VEGF) and Insulin-like Growth Factor 1 (IGF-1) may play a role in prostate cancer development. VEGF and IGF-1 have also been reported to be associated with QoL in people with ovarian cancer and colorectal cancer, respectively. This study completed a series of secondary analyses using two major data-sets (from 850 men newly diagnosed with prostate cancer, and approximately 550 men from the general Queensland population), in which genetic variants of VEGF and IGF-1 were investigated for associations with prostate cancer susceptibility and QoL. The first aim of this research was to investigate genetic variants in the VEGF and IGF-I gene for an association with the risk of prostate cancer. It was found that one IGF-1 genetic variant (rs35765) had a statistically significant association with prostate cancer (p = 0.04), and one VEGF genetic variant (rs2146323) had a statistically significant association with advanced prostate cancer (p = 0.02). The estimates suggest that carriers of the CA and AA genotype for rs35765 may have a reduced risk of developing prostate cancer (Odds Ratio (OR) = 0.72, 95% Confidence Interval (CI) = 0.55, 0.95, OR = 0.60, 95% CI = 0.26, 1.39, respectively). Meanwhile, carriers of the CA and AA genotype for rs2146323 may be at increased risk of advanced prostate cancer, which was determined by a Gleason score of above 7 (OR = 1.72, 95% CI = 1.12, 2.63, OR = 1.90, 95% CI = 1.08, 3.34, respectively). Utilising the widely used short-form health survey, the SF-36v2, the second aim of this study was to investigate the relationship between prostate cancer and QoL prior to treatment. Assessing QoL at this time-point was important as little research has been conducted to evaluate if prostate cancer affects QoL regardless of treatment. The analyses found that mean SF-36v2 scale scores related to physical health were higher by at least 0.3 Standard Deviations (SD) among men with prostate cancer than the general population comparison group. This difference was considered clinically significant (defined by group differences in mean SF-36v2 scores by at least 0.3 SD). These differences were also statistically significant (p<0.05). Mean QoL scale scores related to mental health were similar between men with prostate cancer and those from the general population comparison group. The third aim of this study was to investigate genetic variants in the VEGF and IGF-1 gene for an association with QoL in prostate cancer patients prior to their treatment. It was essential to evaluate these relationships prior to treatment, before the involvement of these genes was potentially interrupted by treatment. The analyses found that some genetic variants had a small clinically significant association (0.3 SD) to some QoL domains experienced by these men. However, most relationships were not statistically significant (p>0.05). Most of the associations found identified that a small sub-group of men with prostate cancer (approximately 2%) reported, on average, a slightly better QoL than the majority of the prostate cancer patients. The fourth aim of this research was to investigate whether associations between genetic variants in VEGF and IGF-1 and QoL were specific to men with prostate cancer, or were also applicable to the general male population. It was found that twenty out of one-hundred relationships between the genetic variants of VEGF and IGF-1 and QoL health-measures and scales examined differed between these groups. In the majority of the relationships involving VEGF SNPs that differed, a clinically significant difference (0.3 or more SD) between mean scores among the genotype groups in prostate cancer patients was found, while mean scores among men from the general-population comparison group were similar. For example, prostate cancer participants who carried at least one T allele (CT or TT genotype) for rs3024994 had a clinically significant higher (0.3 SD) mean QoL score in terms of the role-physical scale, than participants who carried the CC genotype. This was not seen among men from the general population sample, as the mean score was similar between genotype groups. The opposite was seen in regards to the IGF-1 SNPs examined. Overall, these relationships were not considered to directly impact on the clinical options for men with prostate cancer. As this study utilised secondary data from two separate studies, there are a number of important limitations that should be acknowledged including issues of multiple comparisons, power, and missing or unavailable data. It is recommended that this study be replicated as a better-designed study that takes greater consideration of the many factors involved in prostate cancer and QoL. Investigation into other genetic variants of VEGF or IGF-1 is also warranted, as is consideration of other genes and their relationship with QoL. Through identifying certain genetic variants that have a modest association to prostate cancer, this project adds to the knowledge surrounding VEGF and IGF-1 and their role in prostate cancer susceptibility. Importantly, this project has also introduced the potential role genetics plays in QoL, through investigating the relationships between genetic variants of VEGF and IGF-1 and QoL.

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Climate change, resource depletion and increasing urbanization are converging global issues that are challenging the way we design, construct and operate buildings. The housing sector is a significant contributor to these global issues through consumption of limited resources, waste generation and disposal (solid, liquid and atmospheric waste) and negative human health impacts (Senick 2006). Although the design and construction of ‘sustainable housing’ would appear to be an obvious and technically feasible solution, there remains multi-faceted issues affecting the delivery of sustainable housing (Holloway and Bunker 2006). Two fundamental issues - what makes a house sustainable, and to what extent regulation should be used to deliver sustainability - have been, and continue to be, debated at multiple levels in society. Despite personal, professional and political views on these issues, three key characteristics of the whole housing supply chain require fundamental change if we are to successfully address sustainability challenges (Birkeland 2008). These include: fragmentation; established methods, practices and processes, and the relationships between players. A more in-depth understanding of the role of ethics (values, beliefs and standards) and potential ethical conflicts within the supply chain will assist in better defining the nature of the fundamental changes required...

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Objectives To assess the effects of information interventions which orient patients and their carers/family to a cancer care facility and the services available within the facility. Design Systematic review of randomised controlled trials (RCTs), cluster RCTs and quasi-RCTs. Data sources MEDLINE, CINAHL, PsycINFO, EMBASE and the Cochrane Central Register of Controlled Trials. Methods We included studies evaluating the effect of an orientation intervention, compared with a control group which received usual care, or with trials comparing one orientation intervention with another orientation intervention. Results Four RCTs of 610 participants met the criteria for inclusion. Findings from two RCTs demonstrated significant benefits of the orientation intervention in relation to reduced levels of distress (mean difference (MD): −8.96, 95% confidence interval (95%CI): −11.79 to −6.13), but non-significant benefits in relation to the levels state anxiety levels (MD −9.77) (95%CI: −24.96 to 5.41). There are insufficient data on the other outcomes of interest. Conclusions This review has demonstrated the feasibility and some potential benefits of orientation interventions. There was a low level of evidence to suggest that orientation interventions can reduce distress in patients. However, other outcomes, including patient knowledge recall/satisfaction, remain inconclusive. The majority of trials were subjected to high risk of bias and were likely to be insufficiently powered. Further well conducted and powered RCTs are required to provide evidence for determining the most appropriate intensity, nature, mode and resources for such interventions. Patient and carer-focused outcomes should be included.

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The marsupial order Diprotodontia includes 10 extant families, which occupy all terrestrial habitats across Australia and New Guinea and have evolved remarkable dietary and locomotory diversity. Despite considerable attention, the interrelations of these families have for the most part remained elusive. In this study, we separately model mitochondrial RNA and protein-coding sequences in addition to nuclear protein-coding sequences to provide near-complete resolution of diprotodontian family-level phylogeny. We show that alternative topologies inferred in some previous studies are likely to be artifactual, resulting from branch-length and compositional biases. Subordinal groupings resolved herein include Vombatiformes (wombats and koala) and Phalangerida, which in turn comprises Petauroidea (petaurid gliders and striped, feathertail, ringtail and honey possums) and a clade whose plesiomorphic members possess blade-like premolars (phalangerid possums, kangaroos and their allies and most likely, pygmy possums). The topology resolved reveals ecological niche structuring among diprotodontians that has likely been maintained for more than 40 million years.

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Purpose: The purpose of this study was to improve the retention of primary healthcare (PHC) nurses through exploring and assessing their quality of work life (QWL) and turnover intention. Design and methods: A cross-sectional survey design was used in this study. Data were collected using a questionnaire comprising four sections (Brooks’ survey of Quality of Nursing Work Life [QNWL], Anticipated Turnover Intention, open-ended questions and demographic characteristics). A convenience sample was recruited from 143 PHC centres in Jazan, Saudi Arabia. A response rate of 87% (n = 508/585) was achieved. The SPSS v17 for Windows and NVivo 8 were used for analysis purposes. Procedures and tests used in this study to analyse the quantitative data were descriptive statistics, t-test, ANOVA, General Linear Model (GLM) univariate analysis, standard multiple regression, and hierarchical multiple regression. Qualitative data obtained from responses to the open-ended questions were analysed using the NVivo 8. Findings: Quantitative findings suggested that PHC nurses were dissatisfied with their work life. Respondents’ scores ranged between 45 and 218 (mean = 139.45), which is lower than the average total score on Brooks’ Survey (147). Major influencing factors were classified under four dimensions. First, work life/home life factors: unsuitable working hours, lack of facilities for nurses, inability to balance work with family needs and inadequacy of vacations’ policy. Second, work design factors: high workload, insufficient workforce numbers, lack of autonomy and undertaking many non-nursing tasks. Third, work context factors: management practices, lack of development opportunities, and inappropriate working environment in terms of the level of security, patient care supplies and unavailability of recreation room. Finally, work world factors: negative public image of nursing, and inadequate payment. More positively, nurses were notably satisfied with their co-workers. Conversely, 40.4% (n = 205) of the respondents indicated that they intended to leave their current employment. The relationships between QWL and demographic variables of gender, age, marital status, dependent children, dependent adults, nationality, ethnicity, nursing tenure, organisational tenure, positional tenure, and payment per month were significant (p < .05). The eta squared test for these demographics indicates a small to medium effect size of the variation in QWL scores. Using the GLM univariate analysis, education level was also significantly related to the QWL (p < .05). The relationships between turnover intention and demographic variables including gender, age, marital status, dependent children, education level, nursing tenure, organisational tenure, positional tenure, and payment per month were significant (p < .05). The eta squared test for these demographics indicates a small to moderate effect size of the variation in the turnover intention scores. Using the GLM univariate analysis, the dependent adults’ variable was also significantly related to turnover intention (p < .05). Turnover intention was significantly related to QWL. Using standard multiple regression, 26% of the variance in turnover intention was explained by the QWL F (4,491), 43.71, p < .001, with R² = .263. Further analysis using hierarchical multiple regression found that the total variance explained by the model as a whole (demographics and QWL) was 32.1%, F (17.433) = 12.04, p < .001. QWL explained an additional 19% of the variance in turnover intention, after controlling for demographic variables, R squared change =.19, F change (4, 433) = 30.190, p < .001. The work context variable makes the strongest unique contribution (-.387) to explain the turnover intention, followed by the work design dimension (-.112). The qualitative findings reaffirmed the quantitative findings in terms of QWL and turnover intention. However, the home life/work life and work world dimensions were of great important to both QWL and turnover intention. The qualitative findings revealed a number of new factors that were not included in the survey questionnaire. These included being away from family, lack of family support, social and cultural aspects, accommodation facilities, transportation, building and infrastructure of PHC, nature of work, job instability, privacy at work, patients and community, and distance between home and workplace. Conclusion: Creating and maintaining a healthy work life for PHC nurses is very important to improve their work satisfaction, reduce turnover, enhance productivity and improve nursing care outcomes. Improving these factors could lead to a higher QWL and increase retention rates and therefore reinforcing the stabilisation of the nursing workforce. Significance of the research: Many countries are examining strategies to attract and retain the health care workforce, particularly nurses. This study identified factors that influence the QWL of PHC nurses as well as their turnover intention. It also determined the significant relationship between QWL and turnover intention. In addition, the present study tested Brooks’ survey of QNWL on PHC nurses for the first time. The qualitative findings of this study revealed a number of new variables regarding QWL and turnover intention of PHC nurses. These variables could be used to improve current survey instruments or to develop new research surveys. The study findings could be also used to develop and appropriately implement plans to improve QWL. This may help to enhance the home and work environments of PHC nurses, improve individual and organisational performance, and increase nurses’ commitment. This study contributes to the existing body of research knowledge by presenting new data and findings from a different country and healthcare system. It is the first of its kind in Saudi Arabia, especially in the field of PHC. It has examined the relationship between QWL and turnover intention of PHC nurses for the first time using nursing instruments. The study also offers a fresh explanation (new framework) of the relationship between QWL and turnover intention among PHC nurses, which could be used or tested by researchers in other settings. Implications for further research: Review of the extant literature reveals little in-depth research on the PHC workforce, especially in terms of QWL and organisational turnover in developing countries. Further research is required to develop a QWL tool for PHC nurses, taking into consideration the findings of the current study along with the local culture. Moreover, the revised theoretical framework of the current study could be tested in further research in other regions, countries or healthcare systems in order to identify its ability to predict the level of PHC nurses’ QWL and their intention to leave. There is a need to conduct longitudinal research on PHC organisations to gain an in-depth understanding of the determents of and changes in QWL and turnover intention of PHC nurses at various points of time. An intervention study is required to improve QWL and retention among PHC nurses using the findings of the current study. This would help to assess the impact of such strategies on reducing turnover of PHC nurses. Focusing on the location of the current study, it would be valuable to conduct another study in five years’ time to examine the percentage of actual turnover among PHC nurses compared with the reported turnover intention in the current study. Further in-depth research would also be useful to assess the impact of the local culture on the perception of expatriate nurses towards their QWL and their turnover intention. A comparative study is required between PHC centres and hospitals as well as the public and private health sector agencies in terms of QWL and turnover intention of nursing personnel. Findings may differ from sector to sector according to variations in health systems, working environments and the case mix of patients.

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Exercise offers the potential to improve circulation, wound healing outcomes, and functional and emotional wellbeing for adults experiencing venous leg ulceration. Individuals with chronic leg ulcers typically have multiple comorbidities such as arthritis, asthma, chronic obstructive airways disease, cardiac disease or neuromuscular disorders, which would also benefit from regular exercise. The aim of this review is to highlight the relationships between the calf muscle pump and venous return and range of ankle motion for adults with venous leg ulcers. The effect of exercise will also be considered in relation to the healing rates for adults experiencing venous leg ulceration. The findings suggest there is evidence that exercises which engage the calf muscle pump improve venous return. Ankle range of motion, which is crucial for complete activation of the calf muscle pump, can also be improved with simple, home-based exercise programs. However, observational studies still report that venous leg ulcer patients are less physically active than age-matched controls. Therefore, the behavioural reasons for not exercising must be considered. Only two studies, both underpowered, have assessed the effect of exercise on the healing rates of venous leg ulcers. In conclusion, exercise is feasible with this patient population. However, future studies with larger sample sizes are needed to provide stronger evidence to support the therapeutic benefit of exercise as an adjunct therapy in wound care.

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The aim of this paper was to investigate the association between appetite and Kidney-Disease Specific Quality of Life in maintenance hemodialysis patients. Quality of Life (QoL) was measured using the Kidney Disease Quality Of Life survey. Appetite was measured using self-reported categories and a visual analog scale. Other nutritional parameters included Patient-Generated Subjective Global Assessment (PGSGA), dietary intake, body mass index and biochemical markers C-Reactive Protein and albumin. Even in this well nourished sample (n=62) of hemodialysis patients, PGSGA score (r=-0.629), subjective hunger sensations (r=0.420) and body mass index (r=-0.409) were all significantly associated with the Physical Health Domain of QoL. As self-reported appetite declined, QoL was significantly lower in nine domains which were mostly in the SF36 component and covered social functioning and physical domains. Appetite and other nutritional parameters were not as strongly associated with the Mental Health domain and Kidney Disease Component Summary Domains. Nutritional parameters, especially PGSGA score and appetite, appear to be important components of the physical health domain of QoL. As even small reductions in nutritional status were associated with significantly lower QoL scores, monitoring appetite and nutritional status is an important component of care for hemodialysis patients.

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Families of 52 first-admission patients diagnosed with a severe psychiatric disorder were videotaped interacting with the patient. Behavioral coding was used to derive several indices of interaction: base rates of positive and negative behavior by patients and relatives, cumulative affect of patients and relatives (the difference between the rates of positive and negative behaviors), and classification of families as affect-regulated or unregulated. Family-affect regulation reflects positive cumulative affect by both people in a given interaction. Six months after hospital discharge patients were assessed on occurrence of relapse, global functioning, severity of psychiatric symptoms, and quality of life. Relative to affect-unregulated family interaction, affect-regulated interaction predicted significantly fewer relapses, better global functioning, fewer positive and negative psychiatric symptoms, and higher patient quality of life. Most of the predictions by family-affect regulation were independent of

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A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

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Abstract Background: Studies that compare Indigenous Australian and non-Indigenous patients who experience a cardiac event or chest pain are inconclusive about the reasons for the differences in-hospital and survival rates. The advances in diagnostic accuracy, medication and specialised workforce has contributed to a lower case fatality and lengthen survival rates however this is not evident in the Indigenous Australian population. A possible driver contributing to this disparity may be the impact of patient-clinician interface during key interactions during the health care process. Methods/Design: This study will apply an Indigenous framework to describe the interaction between Indigenous patients and clinicians during the continuum of cardiac health care, i.e. from acute admission, secondary and rehabilitative care. Adopting an Indigenous framework is more aligned with Indigenous realities, knowledge, intellects, histories and experiences. A triple layered designed focus group will be employed to discuss patient-clinician engagement. Focus groups will be arranged by geographic clusters i.e. metropolitan and a regional centre. Patient informants will be identified by Indigenous status (i.e. Indigenous and non-Indigenous) and the focus groups will be convened separately. The health care provider focus groups will be convened on an organisational basis i.e. state health providers and Aboriginal Community Controlled Health Services. Yarning will be used as a research method to facilitate discussion. Yarning is in congruence with the oral traditions that are still a reality in day-to-day Indigenous lives. Discussion: This study is nestled in a larger research program that explores the drivers to the disparity of care and health outcomes for Indigenous and non-Indigenous Australians who experience an acute cardiac admission. A focus on health status, risk factors and clinical interventions may camouflage critical issues within a patient-clinician exchange. This approach may provide a way forward to reduce the appalling health disadvantage experienced within the Indigenous Australian communities. Keywords: Patient-clinician engagement, Qualitative, Cardiovascular disease, Focus groups, Indigenous

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It is now possible to combine the use of preimplantation genetic diagnosis (PGD) and tissue matching to select an IVF embryo that will, after birth, be a compatible tissue donor for an existing individual. This article analyses the ethical issues and the regulatory frameworks that intersect around the creation of tissue compatible children.

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Background: This study aims to explore moderation and mediation roles of caregiver self-efficacy between subjective caregiver burden and (a) behavioral and psychological symptoms (BPSD) of dementia; and (b) social support. Methods: A cross-sectional study with 137 spouse caregivers of dementia patients was conducted in Shanghai. We collected demographic information for the caregiver–patient dyads, as well as information associated with dementia-related impairments, caregiver social support, caregiver self-efficacy, and SF-36. Results: Multiple regression analysis showed that caregiver self-efficacy was a moderator both between BPSD and subjective caregiver burden, and social support and subjective caregiver burden. Results also showed a partial mediation effect of caregiver self-efficacy on the impact of BPSD on subjective caregiver burden, and a mediation effect of social support on subjective caregiver burden. Caregiver self-efficacy and subjective burden significantly influenced BPSD and social support. Conclusion: Caregiver self-efficacy played an important role in the paths by which the two factors influenced subjective burden. Enhancing caregiver self-efficacy for symptom management (particularly BPSD) can be an essential strategy for determining interventions to support dementia caregivers in China, and possibly in other countries.