The psychological impact of motor neurone disease

1994 ◽  
Vol 24 (3) ◽  
pp. 625-632 ◽  
Author(s):  
K. E. Hogg ◽  
L. H. Goldstein ◽  
P. N. Leigh
Keyword(s):  
Psychological Impact ◽  
Well Being ◽  
Motor Neurone ◽  
Self Report ◽  
Motor Neurone Disease ◽  
Everyday Functioning ◽  
Ways Of Coping ◽  
Acceptance Of Illness ◽  
Physical Symptomatology

SynopsisSelf-report measures were completed by 59 individuals with motor neurone disease (MND) in order to assess whether: (a) MND affects patients' psychological well-being and quality of life; (b) if greater affective disorder is associated with greater physical disability; (c) whether accepting the illness and ways of coping have an impact on psychological distress, and (d) if beliefs over control of their health shift as the disease progresses. Results indicated that the effects of MND on everyday functioning accounted for incidence of depression and low self-esteem. Acceptance of illness was related to severity of symptoms and was a significant factor irrespective of level of physical symptomatology. Ways of coping with the illness did not relate in any significant way to severity of symptoms. Mild physical impairments were associated with an ‘internal’ view of control over health.

Assessment quality of life as a factor for the improvement of patient-focused therapy of the preschool children with type 1 diabetes

2021 ◽  
Author(s):  
И.Л. Никитина ◽  
А.О. Плаксина ◽  
А.В. Павлов ◽  
И.А. Кельмансон
Keyword(s):  
Quality Of Life ◽  
Type 1 Diabetes ◽  
Preschool Children ◽  
Well Being ◽  
Self Report ◽  
Total Quality ◽  
Everyday Functioning ◽  
The Impact

Оценка качества жизни с точки зрения ребенка, больного сахарным диабетом 1 типа, и его родителей имеет важность для планирования терапии, но может существенно различаться. Целью работы было оценить качество жизни детей дошкольного возраста и их матерей для оптимизации пациент-ориентированных схем лечения и улучшения метаболического контроля диабета. Обследованы 35 детей в возрасте 4-6 лет (19 мальчиков и 16 девочек), больных сахарным диабетом 1 типа, находящихся на лечении в клинике Центра. Для оценки качества жизни использовали русифицированную версию опросника KINDL для детей дошкольного возраста и их матерей. Оценка проводилась по шкалам физического и эмоционального благополучия, самооценки, семейных отношений, взаимоотношения с друзьями, ежедневного функционирования, влияния заболевания, а также суммарных показателей качества жизни по 100-балльной шкале. Статистическая обработка данных проведена с использованием прикладной программы JAMOVI 1.6. Статистически значимые различия были выявлены по шкале суммарной оценки качества жизни, а также по шкалам влияния заболевания и эмоционального благополучия на качество жизни. Установлены более низкие оценки суммарного качества жизни, а также влияния на него заболевания, по мнению матерей по сравнению с детьми с сахарным диабетом 1 типа. Напротив, оценка влияния эмоционального благополучия на качество жизни при сахарном диабете 1 типа была более высокой со стороны матерей по сравнению с их детьми. Наиболее значимое модифицирующее влияние на исследуемые показатели было установлено по факторам образования матери, семейного положения, способа введения инсулина и улучшения контроля диабета. Оценка качества жизни может различаться по мнению детей с сахарным диабетом 1 типа и их матерей. Выявленные особенности рекомендуется использовать в планировании пациент-ориентированных программ лечения диабета и в работе школ сахарного диабета. Assessment of Health Related Quality of Life (HRQoL) features frequently assesses both the child and their mothers perspectives in preschool children with diabetes mellitus type 1 (T1DM), but parent-proxy and child self-reports may differ, and knowledge of these differences are not enough. The aim was to investigate HRQoL assessed by preschool children with T1DM and by their mothers, potential differences in the children-maternal estimates and the factors influencing these discrepancies. 35 preschool children (16 girls from 4-to-6-year-old ) with T1DM underwent the self-report KINDL questionnaire for children aged 4-6 years (Kiddy-KINDL for children). Their mothers underwent the parental version (Kiddy-KINDL for parents). Both versions enable measuring child HRQoL in physical, emotional wellbeing, self-esteem, family, friends, everyday functioning, and the disease dimensions, as well as KINDL total on a 0-100 scale. Statistically significant differences were found on the scale of the total assessment of the quality of life, as well as on the scales of the impact of disease and emotional well-being on the quality of life. Lower estimates of the total quality of life, as well as the effect of the disease on it, in the opinion of mothers, compared with children with type 1 diabetes, were established. In contrast, the assessment of the impact of emotional well-being on the quality of life in type 1 diabetes was higher on the part of mothers compared to their children. The most significant modifying effect on the studied parameters was found for the factors of mother's education, marital status, method of insulin administration, and improved diabetes control. The assessment of the quality of life may differ according to the opinion of children with type 1 diabetes and their mothers. The identified features are recommended for use in planning patient-oriented diabetes treatment programs and in the work of «diabetes schools».

scholarly journals How can electric lighting contribute to human health and well-being?

2021 ◽  
Vol 53 (5) ◽  
pp. 515-522
Author(s):  
P Raynham
Keyword(s):  
Human Health ◽  
Psychological Impact ◽  
Health Benefits ◽  
Well Being ◽  
Health Problems ◽  
Starting Point ◽  
Electric Light ◽  
Health And Well Being ◽  
Hypothetical Explanation

Electric light in buildings may provide some health benefits; however, for most people these benefits are likely to be small. It is possible for electric lighting to cause health problems, if there is too little light or there is glare, but for the most part there is good guidance available and these problems can be avoided. The quality of the lit environment can have a psychological impact and this may in turn impact well-being. A starting point for this is perceived adequacy of illumination. Related lighting metrics are examined and a hypothetical explanation is suggested.

scholarly journals The Psychological Impact of Strict and Prolonged Confinement on Business Students during the COVID-19 Pandemic at a Spanish University

2021 ◽  
Vol 18 (4) ◽  
pp. 1710 ◽  
Author(s):  
Anne Marie Garvey ◽  
Inmaculada Jimeno García ◽  
Sara Helena Otal Franco ◽  
Carlos Mir Fernández
Keyword(s):  
University Students ◽  
Interpersonal Relationships ◽  
Personal Development ◽  
Business Students ◽  
Psychological Impact ◽  
Well Being ◽  
Web Based ◽  
Anxiety Levels ◽  
Severe Anxiety

The study was carried out to examine the situation of university students from one month after the beginning of a very strict confinement process in Spain during the COVID-19 pandemic. Students responded to a survey which included the 7-item Generalized Anxiety Disorder Scale (GAD-7) together with other questions relating to their general well-being from the European Quality of Life Survey (EQLS). A total of 198 university students answered the web-based survey. The questionnaire was generated using Microsoft Forms and was explained and distributed online. The results indicated that around 18.7% of students were suffering from severe anxiety and 70.2% were suffering either mild or moderate anxiety at this point of the strict confinement process. The findings show that when emotional well-being (quality of sleep, the perception of feeling fear, death of a relative) is reduced and material well-being is negatively affected (income level) anxiety levels are increased. On the other hand, the results show that having good interpersonal relationships with family members and taking care of personal development (routines and habits that make them feel good) help reduce anxiety levels. The female students in the sample also suffered higher levels of anxiety than males during strict confinement.

scholarly journals Clinical Profiles and Socio-Demographic Characteristics of Adults with Specific Learning Disorder in Northern Greece

2021 ◽  
Vol 11 (5) ◽  
pp. 602
Author(s):  
Eleni Bonti ◽  
Sofia Giannoglou ◽  
Marianthi Georgitsi ◽  
Maria Sofologi ◽  
Georgia-Nektaria Porfyri ◽  
...  
Keyword(s):  
Adult Population ◽  
Relevant Literature ◽  
Well Being ◽  
Demographic Characteristics ◽  
Self Report ◽  
Learning Disorder ◽  
Northern Greece ◽  
Everyday Functioning ◽  
Specific Learning Disorder ◽  
Specific Learning

The manifestation of Specific Learning Disorder (SLD) during adulthood is one of the least examined research areas among the relevant literature. Therefore, the adult population with SLD is considered a “rare” and “unique” population of major scientific interest. The aim of the current study was to investigate, describe, and analyze the clinical, academic, and socio-demographic characteristics, and other everyday functioning life-skills of adults with SLD, in an attempt to shed more light on this limited field of research. The overall sample consisted of 318 adults, who were assessed for possible SLD. The diagnostic procedure included self-report records (clinical interview), psychometric/cognitive, and learning assessments. The main finding of the study was that SLD, even during adulthood, continues to affect the individuals’ well-being and functionality in all of their life domains. There is an ongoing struggle of this population to obtain academic qualifications in order to gain vocational rehabilitation, as well as a difficulty to create a family, possibly resulting from their unstable occupational status, their financial insecurity, and the emotional/self-esteem issues they usually encounter, due to their ongoing learning problems. Moreover, the various interpersonal characteristics, the comorbidity issues, and the different developmental backgrounds observed in the clinical, academic, personal, social, and occupational profiles of the participants, highlight the enormous heterogeneity and the continuum that characterizes SLD during adulthood. We conclude that there is an imperative need for further research and the construction of more sufficient tools for the assessment and diagnosis of SLD during adulthood, which will take into account the developmental challenges and milestones in a series of domains, in order to assist this “vulnerable” population with their life struggles.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

Mindfulness-based stress reduction for people with chronic diseases

2010 ◽  
Vol 16 (3) ◽  
pp. 200 ◽  
Author(s):  
Monika Merkes
Keyword(s):  
Quality Of Life ◽  
Chronic Diseases ◽  
Stress Reduction ◽  
Well Being ◽  
Multiple Chemical Sensitivity ◽  
Self Report ◽  
Original Research ◽  
Mindfulness Based Stress Reduction ◽  
The Impact

Mindfulness-based stress reduction (MBSR) is a structured group program that uses mindfulness meditation to improve well-being and alleviate suffering. This article reviews the impact of MBSR for people with chronic diseases. The review includes original research that was published in English and peer-reviewed and reported outcomes for adults with chronic diseases who had participated in an MBSR program. Fifteen studies were identified. Outcomes related to mental and physical health, well-being, and quality of life. The studies included different research designs, and used self-report and physiological outcome measures. Participants’ clinical diagnoses included fibromyalgia, chronic pain, rheumatoid arthritis, type 2 diabetes, chronic fatigue syndrome, multiple chemical sensitivity, and cardiovascular diagnoses. All 15 studies found that participation in an MBSR program resulted in improvements. No negative change was reported between baseline and follow up. Outcomes in regard to specific variables were difficult to compare and equivocal. Overall, positive change predominated. Chronic diseases are associated with a range of unwelcome psychological and physical consequences. Participation in an MBSR program is likely to result in coping better with symptoms, improved overall well-being and quality of life, and enhanced health outcomes. As an adjunct to standard care, MBSR has potential for much wider application in Australian primary care settings.

Quality of life outcomes in sarcoma patients receiving care at a tertiary center.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e23557-e23557
Author(s):  
Jonathan R. Day ◽  
Benjamin Miller ◽  
Sarah L. Mott ◽  
Bradley T. Loeffler ◽  
Munir Tanas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Radiation Treatment ◽  
Soft Tissue Sarcomas ◽  
Well Being ◽  
Self Report ◽  
University Of Iowa ◽  
Treatment Type ◽  
Tertiary Center ◽  
Multiple Domains

e23557 Background: Sarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life (QoL) especially physical and functional well-being. This study aims to understand if there is an association between treatment at a tertiary sarcoma center and a difference in QoL. Methods: De-identified data was obtained from the Sarcoma Tissue Repository at University of Iowa. Mixed effects regression models were utilized to evaluate the association between disease and treatment characteristics and QoL. QoL was assessed using the self-report FACT-G questionnaire at 12-, 24-, and 36-months post-diagnosis; overall scores and the 4 well-being subscales (Physical, Emotional, Social, Functional) were calculated. Results: 443 patients were identified. Soft tissue sarcomas were more prevalent (87.6%) than bone (12.4%). 53% of patients received chemotherapy and 38.6% got radiation therapy. Sarcomas were most frequently located in the lower extremities(ext.) (33.1%), followed by abdomen (20.9%), pelvic (13.6%), upper ext. (13.1%), thorax (11.3%), head & neck (7.8%). For ext. sarcoma; lower ext: 144 (71.3%), Upper ext: 58 (28.7%). Patients with extremity sarcoma; 133 had limb sparing and 48 had amputations. FACT-G Scores did not appreciably vary between 12, 24-, and 36-month for any QoL responses. Overall well-being had a mean score reported of 87.7 (sd = 15.7). Social well-being sores averaged 23.5 (5.0). Emotional well-being (EWB) 19.2 (4.1) and functional well-being (FWB) 21.3 (6.1), and physical well-being (PWB) 23.7 (4.6). There was no association between overall, PWB, EWB, or FWB with the histological subtype, radiation treatment, type of limb surgery, or any location in the same patients over time. Chemotherapy treatments were associated with lower well-being in multiple domains; PWB scores being 2.01 points lower, (p < 0.01), EWB scores being 1.27 points lower (p = 0.01) and FWB scores being 1.72 (p = 0.03), and 4.44 points lower overall (p = 0.03), on average, after adjusting for overall changes across time. Patients with ext. sarcoma only overall FACT-G scores differed 6.72 points higher for upper ext. than lower ext (p = 0.04). Conclusions: Overall QoL areas were similar to normative FACT-G scores both overall and specific areas. Having received chemotherapy was associated with lower well-being scores physically, emotionally, functionally, and overall. There were no clinically relevant differences reported in QoL scores between 12-,24-, and 36-months in the same patients. Further work is needed to describe QoL differences among patients with sarcoma at tertiary centers and examine what protective factors may influence patient well-being.

scholarly journals Symptom Experience and Quality of Life of Patients with Breast Cancer Receiving Chemotherapy in Bangladesh

2016 ◽  
Vol 15 (2) ◽  
pp. 201-206
Author(s):  
Mosammat Shamsun Naher Begum ◽  
Wongchan Petpichetchian ◽  
Luppana Kitrungrote
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Medical Science ◽  
Well Being ◽  
Significant Negative Correlation ◽  
Moderate Level ◽  
Self Report ◽  
Symptom Experience ◽  
Breast Cancer Patients

Background: The present study was aimed to the relationships between symptom severity and distress and quality of life (QoL) of patients receiving chemotherapy for breast cancer.Objectives and methodology: A total number of 132 patients, attending both In-patient and Out-patient department and fulfilling the recruitment criteria were included in the study. A self-report questionnaire was used to collect data from the eligible participants by the primary investigator. The data were analyzed by using descriptive and inferential statistical tools. Results: On average, the participants of the study experienced seventeen symptoms with moderate level. The level of QoL of the participants was at moderate level (M=2.02, SD=0.39). Among all the subscales, the physical well-being had the lowest score and social well-being had highest score. Symptom experience and quality of life showed significant negative correlation. Conclusion: The patients with breast cancer would experience high symptoms during a 7-day period after receiving chemotherapy of the previous cycle. Nurses need to perform full measurement of multiple symptoms when care for breast cancer patients after the administration of chemotherapy.Bangladesh Journal of Medical Science Vol.15(2) 2016 p.201-206

scholarly journals Fear of COVID-19 and work-quality of life among nurses: The mediating role of psychological well-being

2021 ◽  
pp. 1985-1990
Author(s):  
Ahmet Maslakçı ◽  
Lütfi Sürücü ◽  
Harun Sesen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Work Life ◽  
Self Report ◽  
Quality Of Work Life ◽  
Psychological Well Being ◽  
Work Quality ◽  
Quality Of Work ◽  
Quality Of Life Scale

This study was conducted in order to analyze the effect of the nurses’ quality of work life based on fear about COVID-19 and examine the psychological well-being as a moderating variable in this relationship. The survey questionnaire was administered among nurses between 1 November 2020 and 14 November 2020. The self-report survey comprised the nurse information survey, Fear of COVID-19 Scale, work quality of life scale, and psychological well-being scale as data collection tools. Data were obtained from 339 nurses. The findings show that fear of COVID-19 negatively affects nurses’ quality of work life. It has been determined that PWB plays a moderating role in this relationship. While the fear of COVID-19 negatively affects the quality of work life in nurses with low psychological well-being, there is not any kind of significant effect on the quality of work life in nurses with high psychological well-being. This result shows that as the psychological well-being of nurses’ increases, fear of COVID-19 effect on quality of work life decreases. The results of the study show that responses designed to enhance psychological well-being can enhance nurses' working conditions that could reduce the negative effects of the fear of COVID-19. There is an urgent need for clinical and policy strategies to help increase nurses’ PWB in order to increase the quality of work life by reducing fear and also anxiety among nurses fighting on the front line during COVID-19.

scholarly journals Mapping the Journey: Family Carers’ Perceptions of Issues Related to End-Stage Care of Individuals with Muscular Dystrophy or Motor Neurone Disease

2003 ◽  
Vol 19 (1) ◽  
pp. 36-42 ◽  
Author(s):  
Sky Dawson ◽  
Linda J. Kristjanson
Keyword(s):  
Muscular Dystrophy ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Perceived Needs ◽  
The Family ◽  
The Individual ◽  
End Stage ◽  
Depth Interviews ◽  
Neuromuscular Conditions

Progress in medical technology and treatment has resulted in more people with neurodegenerative conditions surviving for longer periods of time. This increased lifespan means that these individuals have a longer period of dependency on others, with a heightened need to maintain quality of life for both the individual and the family. Our paper reports on the findings of a study involving in-depth interviews with 16 carers to determine their perceived needs during the final stage of caring for someone with muscular dystrophy (MD) or motor neurone disease. Results suggest that the palliative care model has much to offer individuals with degenerative neuromuscular conditions and their families, but it is not yet recognized as an important part of care for young people with MD. Three major themes emerged in the analysis: reactions and responses, health system crossing points, reaching forward.

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