The Paradoxes of Quality of Life and its Phenomenological Approach

Although evaluation scales for quality of life (QOL) represent considerable progress in medicine, clinical experience shows striking discrepancies between QOL as evaluated by caregivers and QOL from the patient's point of view. Such paradoxes of QOL are analyzed and discussed. Autonomy is universally advocated but may be denied, especially in the hospital setting, where caregivers, family members, and doctors act as a pressure group. Circumstances that deepen the contradictions in QOL assessment include (a) a high degree of patient dependence, (b) a professional judgement that a patient is incompetent (c) professional values being placed over a patient's values, (d) a multidisciplinary team acting as a pressure group, (e) a lack of effective communication with the patient, and (f) a determination to minimize the symptoms at evaluation. QOL is multidimensional, complex, difficult to measure in clinical practice, and sometimes paradoxical.

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A Futures Study on the Quality Of Life from the Point Of View of Iranian Youth

Social and Management Research Journal ◽

10.24191/smrj.v14i2.5598 ◽

2017 ◽

Vol 14 (2) ◽

pp. 1

Author(s):

Sina Saeedy ◽

Mojtaba Amiri ◽

Mohammad Mahdi Zolfagharzadeh ◽

Mohammad Rahim Eyvazi

Keyword(s):

Quality Of Life ◽

Life Satisfaction ◽

Mixed Model ◽

Satisfaction With Life ◽

Point Of View ◽

Human Society ◽

Futures Studies ◽

The Social ◽

The University

Quality of life and satisfaction with life as tightly interconnected concepts have become of much importance in the urbanism era. No doubt, it is one of the most important goals of every human society to enhance a citizen’s quality of life and to increase their satisfaction with life. However, there are many signs which demonstrate the low level of life satisfaction of Iranian citizens especially among the youth. Thus, considering the temporal concept of life satisfaction, this research aims to make a futures study in this field. Therefore, using a mixed model and employing research methods from futures studies, life satisfaction among the students of the University of Tehran were measured and their views on this subject investigated. Both quantitative and qualitative data were analysed together in order to test the hypotheses and to address the research questions on the youth discontentment with quality of life. Findings showed that the level of life satisfaction among students is relatively low and their image of the future is not positive and not optimistic. These views were elicited and discussed in the social, economic, political, environmental and technological perspectives. Keywords: futures studies, quality of life, satisfaction with life, youth

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Stakeholder Expectation of Corporate Social Responsibility Practices: A Case Study of PWiK Rybnik, Poland

Energies ◽

10.3390/en14113337 ◽

2021 ◽

Vol 14 (11) ◽

pp. 3337

Author(s):

Aleksandra Kuzior ◽

Józef Ober ◽

Janusz Karwot

Keyword(s):

Quality Of Life ◽

Corporate Social Responsibility ◽

Social Responsibility ◽

Water Supply ◽

Research Problem ◽

Point Of View ◽

Educational Activities ◽

External Stakeholders ◽

Corporate Social

Practices of corporate social responsibility (CSR), especially in organizations providing key services, related to the supply of fuel, water and energy, are extremely important from the point of view of identifying stakeholders with the functioning of enterprises in line with the principles of a closed loop economy. The article discusses the origins and evolution of the concept of corporate social responsibility, with particular emphasis on the water supply and sewage industry. The research problem was the perception and expectations of stakeholders toward prosocial activities of PWiK Rybnik (Sewage and Water Supply Ltd. Rybnik). The hypothesis assumed in the study was that the external stakeholders of PWIK Rybnik positively assess the company’s involvement in the tasks carried out as part of corporate social responsibility, they notice the involvement in educational activities and additional initiatives of PWIK that improve the quality of life of its inhabitants. For the purpose of this study, a quantitative method was used. For the purpose of the survey, the authors’ questionnaire “Survey of customers’ opinions on the activities undertaken by PWiK Rybnik” was created. The surveys conducted confirmed the hypothesis that the external stakeholders of PWIK Rybnik positively assess the company’s involvement in the tasks performed as part of corporate social responsibility; they notice the involvement in educational activities and additional initiatives of PWIK that improve the quality of life of its inhabitants. The results of the research made it possible to formulate guidelines for the operation of water supply and sewage companies in accordance with corporate social responsibility in the light of the opinions of their stakeholders.

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Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-021-00315-z ◽

2021 ◽

Vol 5 (1) ◽

Author(s):

Åsa Kettis ◽

Hanna Fagerlind ◽

Jan-Erik Frödin ◽

Bengt Glimelius ◽

Lena Ring

Keyword(s):

Quality Of Life ◽

Clinical Practice ◽

Significant Difference ◽

Patient Reported ◽

Health Related Qol ◽

Health Related ◽

Secondary Outcomes ◽

The Impact ◽

Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

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The Quality of Life and Satisfaction with Continuous Glucose Monitoring Therapy in Children under 7 Years of Age with T1D Using the rtCGM System Integrated with Insulin Pump—A Caregivers Point of View

Sensors ◽

10.3390/s21113683 ◽

2021 ◽

Vol 21 (11) ◽

pp. 3683

Author(s):

Ewa Rusak ◽

Natalia Ogarek ◽

Karolina Wolicka ◽

Anna Mrówka ◽

Sebastian Seget ◽

...

Keyword(s):

Quality Of Life ◽

Insulin Pump ◽

Age Groups ◽

Glucose Monitoring ◽

Point Of View ◽

Therapy Assessment ◽

Monitoring Therapy ◽

Original Survey

Quality of life (QoL) is an important parameter that affects the choice of therapy. Assessment of QoL and satisfaction with therapy using the rtCGM in children with T1D aged < 7 years was conducted. The study group consisted of 38 children with T1D aged < 7 years (34% aged 2–4, 66% aged 5–7 years), HbA1c: 6.53 ± 0.63%, duration of diabetes: 2.6 ± 1.6 years, treated with an rtCGM-augmented insulin pump for 1.92 ± 1.15 years. Two anonymous surveys were conducted: a. PedsQL3.0 diabetes standardized questionnaire—QoL assessment among age groups: 2–4/5–7 years. b. An original survey assessing the CGM use satisfaction. The mean scores in PedsQL3.0: communication 75%, worries 30%, treatment 70%, and problems associated with diabetes 65%. The QoL scale is: 0–19% very low, 20–39% low, 40–59% moderate, 60–79% high, 80–100% very high. The most frequently reported concerns were long-term diabetes complications and prick pain. Satisfaction with CGM use was high (68% in group aged 5–7 and 92% 2–4 years). Twenty-seven (71%) caregivers confirmed the positive effect of CGM on sleep. During the use of rtCGM a high quality of life was reported, and the quality of sleep in their caregivers was increased.

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Guided Self-help Teletherapy for Behavioural Difficulties in Children with Epilepsy

Journal of Clinical Psychology in Medical Settings ◽

10.1007/s10880-021-09768-2 ◽

2021 ◽

Author(s):

Sophie Bennett ◽

Isobel Heyman ◽

Sophia Varadkar ◽

Anna Coughtrey ◽

Fahreen Walji ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Unmet Need ◽

Hospital Setting ◽

Physical And Mental Health ◽

Paediatric Hospital ◽

Complex Needs ◽

Self Help ◽

Behavioural Difficulties

AbstractBehavioural difficulties impact greatly upon quality of life for children with chronic illness and their families but are often not identified or adequately treated, possibly due to the separation of physical and mental health services. This case study describes the content and outcomes of guided self-help teletherapy for behavioural difficulties in a child with epilepsy and complex needs using an evidence-based behavioural parenting protocol delivered within a paediatric hospital setting. Behavioural difficulties and progress towards the family’s self-identified goals were monitored at each session. Validated measures of mental health and quality of life in children were completed before and after intervention and satisfaction was measured at the end of treatment. Measures demonstrated clear progress towards the family’s goals and reduction in weekly ratings of behavioural difficulties. This case demonstrates that a guided self-help teletherapy approach delivered from within the paediatric setting may be one way of meeting unmet need.

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Health-Related Quality of Life Following Allogeneic Hematopoietic Stem Cell Transplantation

Hematology ◽

10.1182/asheducation-2010.1.248 ◽

2010 ◽

Vol 2010 (1) ◽

pp. 248-254 ◽

Cited By ~ 20

Author(s):

Margaret Bevans

Keyword(s):

Quality Of Life ◽

Stem Cell ◽

Clinical Practice ◽

Hematopoietic Stem Cell Transplantation ◽

Health Related Quality ◽

Hematopoietic Stem ◽

Allogeneic Hsct ◽

Related Quality ◽

Health Related

Abstract It is common knowledge that an allogeneic hematopoietic stem cell transplantation (HSCT) will have an enormous impact on the lives of transplant recipients and their families. Once an appropriate donor is identified, the curative potential of this treatment often drives the decision to proceed knowing that there will be intense physiologic toxicities and adverse effects on health-related quality of life (HRQL). Twenty-five years ago, HRQL was identified as an efficacy parameter in the evaluation of new anticancer drug therapy. Overall, the evidence suggests that an allogeneic HSCT has a significant impact on the overall HRQL of recipients, which is a result of decrements across all dimensions, including a significant symptom profile. The degree of impact on overall HRQL and the multiple dimensions varies across the transplant trajectory. Specific HRQL dimensions, such as physical function and symptoms, are easily incorporated into a clinician's assessment whereas other dimensions (eg, psychosocial) are less commonly integrated. The translation of HRQL results to improve clinical practice is not well established. Clinicians are often uncertain when to assess the scope of HRQL and how to interpret the information in a clinically meaningful way. The purpose of this review is to highlight the quality-of-life effects of allogeneic HSCT and discuss application into clinical practice.

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