| 1. |
- Dunberger, Gail, et al.
(författare)
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Cancer survivors' perception of participation in a long-term follow-up study.
- 2013
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Ingår i: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 39:1, s. 41-5
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Tidskriftsartikel (refereegranskat)abstract
- Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.
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| 2. |
- Axelsson, Lena, et al.
(författare)
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Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives
- 2020
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 27:2, s. 419-432
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Tidskriftsartikel (refereegranskat)abstract
- Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.
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| 3. |
- Karlsson Rosenblad, Andreas, Fil. dr, 1973-, et al.
(författare)
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A psychometric evaluation of the Functional assessment of cancer therapy-kidney symptom index (FKSI-19) among renal cell carcinoma patients suggesting an alternative two-factor structure
- 2021
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Ingår i: Quality of Life Research. - : Springer. - 0962-9343 .- 1573-2649. ; 30:9, s. 2663-2670
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To psychometrically evaluate the hypothesized four-factor structure of the 19-item Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI-19) health-related quality of life (HRQoL) instrument in a sample of surgically treated renal cell carcinoma (RCC) patients and examine if an alternative factor structure with good psychometric properties may be derived from the available items.METHODS: The model fit of the hypothesized four-factor structure was examined using confirmatory factor analysis on cohort data from 1731 individuals included in the National Swedish Kidney Cancer Register who had undergone surgery for RCC during the three years 2016-2018 and answered the FKSI-19 instrument within 6-12 months after surgery. Exploratory factor analysis was applied to the same dataset to derive a possible alternative factor solution.RESULTS: -value or the Comparative Fit Index, although the Standardized Root Mean Square Residual and Root Mean Square Error of Approximation measures indicated good and acceptable model fits, respectively. An alternative 14-item trimmed FKSI version (FKSI-14) with a two-factor structure derived from the available FKSI-19 items was found to measure the same aspects of HRQoL as the full FKSI-19 instrument.CONCLUSION: The present study is the first to use psychometric methods for examining the factor structure of the FKSI-19 instrument. The hypothesized four-factor structure of FKSI-19 provided a barely acceptable model fit. The two-factor FKSI-14 structure may be used as an alternative or complement to the four-factor structure when interpreting the FKSI-19 instrument.
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| 4. |
- Rönningås, Ulrika, et al.
(författare)
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Prostate-specific antigen (PSA) and distress : a cross-sectional nationwide survey in men with prostate cancer in Sweden
- 2019
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Ingår i: BMC Urology. - : BioMed Central (BMC). - 1471-2490. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: The prostate-specific antigen (PSA) -value is often used during the prostate cancer trajectory as a marker of progression or response to treatment. Concerns about PSA-values are often expressed by patients in clinical situations. Today there is a lack of larger studies that have investigated the association between PSA-value and distress. The aim was to investigate the association between PSA-values and distress adjusted for sociodemographic factors, hormonal therapy and quality of life (QoL), among men with prostate cancer.Methods: In this cross-sectional survey of 3165 men with prostate cancer, members of the Swedish Prostate Cancer Federation, answered questions about sociodemographic factors, PSA, distress, QoL and treatments. Descriptive statistics, and bivariate and multivariable analyses were performed. The result was presented based on four PSA-value groups: 0–19, 20–99, 100–999, and ≥ 1000 ng/ml.Results: Of the men, 53% experienced distress. An association between distress and PSA-values was found where higher PSA-values were associated with higher OR:s for experiencing distress in the different PSA-groups: 0–19 ng/ml (ref 1), 20–99 ng/ml (OR 1.25, 95% CI 1.01–1.55), 100–999 ng/ml (OR 1.47, 95% CI 1.12–1.94), ≥1000 ng/ml (OR 1.77, 95% CI 1.11–2.85). These associations were adjusted for sociodemographic factors and hormonal therapy. In the multivariable analyses, beside PSA-values, higher levels of distress were associated with being without partner or hormonal therapy. When adding QoL in the multivariable analysis, the association between PSA and distress did not remain significant.Conclusion: These results indicate that the PSA-values are associated with distress, especially for those with higher values. However, to be able to support these men, continued research is needed to gain more knowledge about the mechanisms behind the association between emotional distress and PSA-values.
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| 5. |
- Gebrie, Mignote Hailu, et al.
(författare)
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Health-related quality of life among patients with end-stage renal disease undergoing hemodialysis in Ethiopia : a cross-sectional survey
- 2023
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central (BMC). - 1477-7525. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundMeasurement of health-related quality of life (HRQOL) enables identification of treatment-related side effects of a disease. Such aspects may negatively impact on patients' lives and should be taken into consideration in medical decision-making. In sub-Saharan Africa, research from the perspective of patients with chronic kidney disease is scarce, and it is almost non-existent in patients undergoing hemodialysis. We aimed to determine HRQOL among end-stage renal disease patients undergoing maintenance hemodialysis in Ethiopia and to identify factors associated with HRQOL.MethodsA multi-center cross-sectional study was conducted in Addis Ababa, Ethiopia directed to all patients receiving hemodialysis due to kidney failure at 11 randomly-selected government and private hospitals/dialysis centers in the capital of Ethiopia. Data were collected by trained nurses using the KDQOL-36 instrument with five subscales measuring generic and disease-specific HRQOL. Study-specific items were used to collect socio-demographic and clinical data. Factors associated with HRQOL were examined using multivariable linear regression models.ResultsFour hundred eighty-one patients completed the survey through face-to-face interviews (response rate 96%; mean age 45.34 +/- 14.67). The mean scores of the subscales ranged from 25.6 to 66.68 (range 0-100), with higher scores reflecting better health. Factors associated with low HRQOL included older age, female sex, no formal education, poor medication adherence, > 2 hemodialysis sessions/week, lower body mass index (< 18.5), longer duration of hemodialysis treatment (>= 12 months), and poor social support.ConclusionPatients with kidney failure undergoing hemodialysis in Addis Ababa, Ethiopia, had low HRQOL across all subscales compared to previous studies. Therefore, the implementation of guidelines is crucial to improve patients' adherence to their prescribed medications. Furthermore, establishing patient support groups and encouraging patients to use the available support resources from family members, neighbors, and friends have the potential to improve patients' HRQOL.
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| 6. |
- Gebrie, Mignote Hailu, et al.
(författare)
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Patients' experience of undergoing maintenance hemodialysis : An interview study from Ethiopia
- 2023
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:5
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Tidskriftsartikel (refereegranskat)abstract
- Background People with kidney failure require renal replacement therapy in the form of dialysis or a kidney transplant for survival. Many facets of their life, both within and outside the dialysis unit, are impacted by the management of this disease. It is important to comprehend the experiences of people undergoing hemodialysis in order to improve the care provided to them. Therefore, this study aimed to explore the experiences of patients undergoing maintenance hemodialysis in Ethiopia.Methods A qualitative descriptive study was conducted at two healthcare facilities in Ethiopia. Individual interviews with 15 participants (men and women aged 19-63), undergoing hemodialysis in Ethiopia, were analyzed using reflexive thematic analysis.Results The analysis resulted in five themes: Feeling grateful, Facing a restricted life, a Supportive environment, Dreaming of a transplant, and Leading a hassled life. The subthemes include Trust in treatment, Faith in God, Challenging fluid and dietary restrictions, Being too fatigued to socialize, Being stigmatized, Family and social support, Supportive healthcare, Lacking a donor and sponsor, COVID-19 as a barrier, Financial constraints, Inaccessibility to care and transport and Access line implantation. Despite being dependent on a machine and having to deal with food and fluid restrictions as well as financial challenges, participants were hopeful and dreamed of a transplant.Conclusion From the study's participants, it was discovered that the experiences of people with kidney failure undergoing hemodialysis were generally, considerably negative narratives. Based on the results we recommend development of multidisciplinary teams to better meet patients' physical, emotional, and social needs while undergoing hemodialysis. Such a team should also involve the patient's family members when caring for patients on hemodialysis.
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| 7. |
- Wallin, Jeanette, et al.
(författare)
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Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics : A comparative study
- 2023
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Ingår i: Hemodialysis International. - : John Wiley & Sons. - 1492-7535 .- 1542-4758. ; 27:4, s. 454-464
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics. Methods: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics. Findings: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (kappa = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (kappa = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ. Discussion: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.
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