Living with an Illness Called Parkinson’s

2021 ◽  
pp. 53-81
Author(s):  
Allan Hugh Cole
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Subjective Experience ◽  
Physiological State ◽  
Phenomenological Approach ◽  
Fundamental Nature ◽  
The Way

This chapter considers three matters. First, it explains how a counselor best becomes familiar with the experiences and needs of persons with Parkinson’s (PwP) by using a phenomenological approach to counseling. Second, the chapter details the nature of living with Parkinson’s, including the condition’s wide-ranging effects on quality of life. Third, the chapter shows how counselors may work with PwP using a time-limited approach after understanding the fundamental nature of Parkinson’s and what it requires in the way of supportive care. The loss-based counseling (LBC) approach is introduced. Finally, perhaps most crucial for the book as a whole, the chapter presents an argument for why thinking in terms of a person having an illness, as opposed to a disease, is most helpful. Specifically, a focus on disease prioritizes the objective physiological state, whereas a focus on illness prioritizes a person’s subjective experience of living with the disease.

Strategic threats to energy security as risks of quality of people's life

2020 ◽  
Vol 16 (4) ◽  
pp. 730-744
Author(s):  
V.I. Loktionov
Keyword(s):  
Quality Of Life ◽  
Energy Security ◽  
Well Being ◽  
Scientific Methods ◽  
Analysis And Synthesis ◽  
General Scientific ◽  
And Performance ◽  
Economic Well Being ◽  
The Way

Subject. The article reviews the way strategic threats to energy security influence the quality of people's life. Objectives. The study unfolds the theory of analyzing strategic threats to energy security by covering the matter of quality of people's life. Methods. To analyze the way strategic threats to energy security spread across cross-sectoral commodity and production chains and influences quality of people's living, I applied the factor analysis and general scientific methods of analysis and synthesis. Results. I suggest interpreting strategic threats to energy security as risks of people's quality of life due to a reduction in the volume of energy supply. I identified mechanisms reflecting how the fuel and energy complex and its development influence the quality of people's life. The article sets out the method to assess such quality-of-life risks arising from strategic threats to energy security. Conclusions and Relevance. In the current geopolitical situation, strategic threats to energy security cause long-standing adverse consequences for the quality of people's life. If strategic threats to energy security are further construed as risk of quality of people's life, this will facilitate the preparation and performance of a more effective governmental policy on energy, which will subsequently raise the economic well-being of people.

scholarly journals Bone Pain in Multiple Myeloma (BPMM)—A Protocol for a Prospective, Longitudinal, Observational Study

Cancers ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 1596
Author(s):  
Marta Diaz-delCastillo ◽  
Rebecca E. Andrews ◽  
Aritri Mandal ◽  
Thomas L. Andersen ◽  
Andrew D. Chantry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Observational Study ◽  
Bone Turnover ◽  
Bone Pain ◽  
Subjective Experience ◽  
Prospective Longitudinal ◽  
Bone Turnover Biomarkers

Multiple myeloma (MM) is a bone marrow neoplasia that causes bone pain in 70% patients. While preclinical models of MM have suggested that both nerve sprouting and nerve injury may be causative for the pain, there is a lack of clinical data. Thus, the primary aims of this clinical study are: (1) to provide a deep characterization of the subjective experience of pain and quality of life in MM patients; (2) to investigate disturbances in the bone innervation of MM patients. Secondary aims include exploring correlations between pain and serum inflammatory and bone turnover biomarkers. In a prospective, observational study (clinicaltrials.gov: NCT04273425), patients with suspected MM requiring a diagnostic iliac crest biopsy at Sheffield Teaching Hospital (UK) are invited to participate. Consenting patients answer seven standardized questionnaires assessing pain, quality of life and catastrophizing. Bone turnover biomarkers and inflammatory cytokines are measured in fasting serum samples, and bone innervation is evaluated in diagnostic biopsies. MM patients are invited to a follow-up upon completion of first line treatment. This will be the first deep characterization of pain in MM patients and its correlation with disturbances in bone innervation. Understanding how bone turnover and inflammation correlate to pain in MM is crucial to identify novel analgesic targets for this condition.

Randomized Controlled Trial of Azacitidine in Patients With the Myelodysplastic Syndrome: A Study of the Cancer and Leukemia Group B

2002 ◽  
Vol 20 (10) ◽  
pp. 2429-2440 ◽  
Author(s):  
Lewis R. Silverman ◽  
Erin P. Demakos ◽  
Bercedis L. Peterson ◽  
Alice B. Kornblith ◽  
Jimmie C. Holland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomized Controlled Trial ◽  
High Risk ◽  
Myelodysplastic Syndrome ◽  
Supportive Care ◽  
Controlled Trial ◽  
Myelogenous Leukemia ◽  
Leukemic Transformation ◽  
Randomized Controlled

PURPOSE: Patients with high-risk myelodysplastic syndrome (MDS) have high mortality from bone marrow failure or transformation to acute leukemia. Supportive care is standard therapy. We previously reported that azacitidine (Aza C) was active in patients with high-risk MDS.PATIENTS AND METHODS: A randomized controlled trial was undertaken in 191 patients with MDS to compare Aza C (75 mg/m2/d subcutaneously for 7 days every 28 days) with supportive care. MDS was defined by French-American-British criteria. New rigorous response criteria were applied. Both arms received transfusions and antibiotics as required. Patients in the supportive care arm whose disease worsened were permitted to cross over to Aza C.RESULTS: Responses occurred in 60% of patients on the Aza C arm (7% complete response, 16% partial response, 37% improved) compared with 5% (improved) receiving supportive care (P < .001). Median time to leukemic transformation or death was 21 months for Aza C versus 13 months for supportive care (P = .007). Transformation to acute myelogenous leukemia occurred as the first event in 15% of patients on the Aza C arm and in 38% receiving supportive care (P = .001). Eliminating the confounding effect of early cross-over to Aza C, a landmark analysis after 6 months showed median survival of an additional 18 months for Aza C and 11 months for supportive care (P = .03). Quality-of-life assessment found significant major advantages in physical function, symptoms, and psychological state for patients initially randomized to Aza C.CONCLUSION: Aza C treatment results in significantly higher response rates, improved quality of life, reduced risk of leukemic transformation, and improved survival compared with supportive care. Aza C provides a new treatment option that is superior to supportive care for patients with the MDS subtypes and specific entry criteria treated in this study.

scholarly journals Perempuan Pencari Nafkah Selama Pandemi Covid-19

2021 ◽  
Vol 4 (1) ◽  
pp. 13-29
Author(s):  
Eka Kartika Sari ◽  
Biko Nabih Fikri Zufar
Keyword(s):  
Quality Of Life ◽  
Qualitative Research ◽  
Research Methods ◽  
Phenomenological Approach ◽  
Qualitative Research Methods ◽  
Economic Conditions ◽  
Condition Of Women ◽  
At Home

The perception of women as the number two role in society continues to this day. This knowledge has an impact on women's inferiority and subordination. In addition, the conditions of the Covid-19 pandemic have increased the workload for women at home. The workload for women has increased threefold, including earning a living in it. The woman breadwinner in Kampung Kue Rungkut Lor II experienced this during the pandemic. This article uses qualitative research methods and a phenomenological approach, in order to obtain data on the quality of life in the Kampung Kue Rungkut Lor II community. The purpose of this study was to determine descriptively the condition of women breadwinners during the pandemic. As a result, the “Pembatasan Sosial Berskala Besar” (PSBB) affected the economic conditions in the Kampung Kue Rungkut Lor II community, and women also experienced three times more workload than men at home. The pandemic has actually added to the exploitation and oppression of women in the Kampung Kue Rungkut Lor II community. Therefore, it is necessary to have further research on the quality of life of women breadwinners in Kampung Kue Rungkut Lor II before the pandemic to find out the differences in the quality of life of women breadwinners in the same location.

scholarly journals Identity considerations for a psychology based on a complex epistemology

2009 ◽  
Vol 2 (2) ◽  
pp. 158-166 ◽  
Author(s):  
Juan Carlos Jaramillo Estrada
Keyword(s):  
Quality Of Life ◽  
Nineteenth Century ◽  
Active Part ◽  
Late Nineteenth Century ◽  
Human Beings ◽  
The Poor ◽  
The World ◽  
Late Nineteenth ◽  
The Way

Born in the late nineteenth century, within the positivist paradigm, psychology has made important developments that have allowed its recognition in academia and labor. However, contextual issues have transformed the way we conceptualize reality, the world and man, perhaps in response to the poor capacity of the inherited paradigm to ensure quality of life and welfare of human beings. This has led to the birth and recognition of new paradigms, including complex epistemology, in various fields of the sphere of knowledge, which include the subjectivity, uncertainty, relativity of knowledge, conflict, the inclusion of "the observed" as an active part of the interventions and the relativity of a single knowable reality to move to co-constructed realities. It is proposed an approach to the identity consequences for a psychology based on complex epistemology, and the possible differences and relations with psychology, traditionally considered.

scholarly journals The Dignity of Middle Adult Palliative Patients at Home in Bantul

2021 ◽  
Vol 9 (T4) ◽  
pp. 347-353
Author(s):  
Bertha Tesma Wulandari ◽  
Arianti Arianti
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Data Collection ◽  
Phenomenological Approach ◽  
Self Esteem ◽  
Care Needs ◽  
Thick Description ◽  
Collection Data ◽  
At Home

BACKGROUND: The condition of middle adult patients with palliative disease is prone to experiencing physical weakness and psychological suffering, disrupting dignity. As a caregiver at home, the family plays an essential role in providing support to maintain patient dignity. AIM: This study aims to determine the image of the dignity of the middle adult patient with palliative care needs by family at home. METHODS: This research is a qualitative study with a phenomenological approach. Participants were seven people with the purposive sampling method. Data collection methods were conducted using in-depth interviews and semi-structured observation. Research instruments included interview guidelines, field notes, and an observation form. Data validity used reference material, rich and thick description, and peer debriefing. Data analysis included data collection, data reduction, data presentation, and conclusion. RESULTS: The results showed that the dignity of patients was considered by six themes; self-esteem went up and down, the meaning of illness and death, family response to the patient, sources of decision-making, an image of the quality of life, and future wishes. CONCLUSION: This study had six themes depicting the dignity of patients that consisted of subthemes. The themes included self-esteem went up and down, the meaning of illness and death, family response to the patient, sources of decision-making, an image of the quality of life, and future wishes.

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