Losing a child due to a life-limiting diagnosis—parental well-being and quality of life: nationwide survey

2021 ◽  
pp. bmjspcare-2021-003251
Author(s):  
Camilla Lykke ◽  
Per Sjøgren ◽  
Ola Ekholm
Keyword(s):  
Quality Of Life ◽  
Associated Factors ◽  
Health Anxiety ◽  
Nationwide Survey ◽  
Well Being ◽  
Poor Quality ◽  
Symptom Index ◽  
Logistic Regression Models ◽  
Lower Education

ObjectiveLosing a child is burdensome with potential long-term impact on the parents’ well-being and quality of life. The aim was to investigate parental well-being and quality of life 3–5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions.MethodsAll parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models.ResultsIn all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life.ConclusionAccording to the VDS, 1 out of 10 parents experienced poor overall quality of life 3–5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.

Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review

2021 ◽  
pp. 136749352110129
Author(s):  
Alice S Schamong ◽  
Hannah Liebermann-Jordanidis ◽  
Konrad Brockmeier ◽  
Elisabeth Sticker ◽  
Elke Kalbe
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Associated Factors ◽  
Congenital Heart ◽  
Negative Impact ◽  
Well Being

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

scholarly journals Factors associated with the quality of life of elderly caregivers of other elderly persons

2019 ◽  
Vol 22 (3) ◽  
Author(s):  
Letícia Decimo Flesch ◽  
Samila Sathler Tavares Batistoni ◽  
Anita Liberalesso Neri ◽  
Meire Cachioni
Keyword(s):  
Quality Of Life ◽  
Signs And Symptoms ◽  
Well Being ◽  
The Elderly ◽  
Poor Quality ◽  
Elderly Persons ◽  
Self Rated Health ◽  
Selection Of Variables ◽  
Elderly Caregivers

Abstract Objective : To evaluate the association between the double vulnerability of being elderly and a caregiver and quality of life assessed by Control, Autonomy, Self-realization and Pleasure factors (CASP-19). Method : 148 elderly caregivers participated in the present study. They were selected for convenience from Brazilian public and private health services - a sample from the study “The Psychological Well-Being of Elderly Persons Caring for Other Elderly Persons in a Family Context”. The variables: caregiver’s state of health, care demands, perception of burden, self-rated health, and quality of life were selected. Descriptive analyses, chi-squared tests, Fisher’s exact test, the Kruskal-Wallis test and analysis of multivariate hierarchical logistics were carried out, with theStepwisecriteria applied for selection of variables. Results : The hierarchical multivariate analyses found that number of symptoms and total burden were significantly associated with a poorer quality of life. Elderly persons with three or more symptoms and those with a high burden level were at a higher risk of poor quality of life. The variables number of diseases, burden, and self-rated health compared with the past, were significantly associated with a poorer quality of life. Conclusion : It can be concluded that for the elderly caregiver, physical aspects (signs and symptoms, chronic diseases and a perception of health deterioration) combined with burden are the aspects that most influence quality of life.

scholarly journals The prevalence and associated factors of depression among patients with schizophrenia in Addis Ababa, Ethiopia, cross-sectional study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Tolesa Fanta ◽  
Desalegn Bekele ◽  
Getinet Ayano
Keyword(s):  
Quality Of Life ◽  
Substance Use ◽  
Suicide Attempt ◽  
Associated Factors ◽  
Cross Sectional Study ◽  
Poor Quality ◽  
Sectional Study ◽  
Comorbid Depression ◽  
Cross Sectional

Abstract Background Depression is common among people with schizophrenia and associated with severe positive and negative symptoms, higher rates of disability, treatment resistance and mortality related to suicide, physical and drug-related causes. However, to our knowledge, no study has been conducted to report the magnitude of depression among people with schizophrenia in Ethiopia. Therefore, this study aimed to determine the prevalence and associated factors of depression among people with schizophrenia. Method A hospital-based cross-sectional study was conducted among 418 patients with schizophrenia selected by systematic sampling technique. Patient Health Questionnaire 9 (PHQ-9) was used to measure depression among the study participants. To identify the potential contributing factors, we performed binary and multivariable logistic regression analysis adjusting the model for the potential confounding factors. Odds ratios (OR) with the corresponding 95% confidence interval (95%CI)) was determined to evaluate the strength of association. Result The prevalence estimate of depression among people with schizophrenia was found to be 18.0% [95% confidence interval: 14.50–22.30]. Our multivariable analysis revealed that current substance use (AOR 2.28, 95%CI (1.27, 4.09), suicide attempt (AOR 5.24, 95%CI (2.56, 10.72), duration of illness between 6 and 10 years (AOR 2.09, 95%CI (1.08, 4.04) and poor quality of life (AOR 3.13, 95%CI (1.79, 5.76) were found to be the factors associated with depression among people with schizophrenia. Conclusion The current study revealed that comorbid depression was high among people with schizophrenia and associated with current substance use, suicide attempt, and long duration of the illness as well as poor quality of life. Attention needs to be given to address comorbid depression among people with schizophrenia.

scholarly journals Impact of the COVID-19 Pandemic on Mental Well-Being. A Nationwide Online Survey Covering Three Pandemic Waves in Poland

2021 ◽  
Vol 12 ◽  
Author(s):  
Mateusz Babicki ◽  
Krzysztof Kowalski ◽  
Bogna Bogudzińska ◽  
Agnieszka Mastalerz-Migas
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Psychiatric Treatment ◽  
Human Life ◽  
Nationwide Survey ◽  
Well Being ◽  
Anxiety Symptoms ◽  
Life Assessment ◽  
Subjective Quality Of Life

The COVID-19 pandemic has a significant impact on human life. This study aims to assess the prevalence of depressive and anxiety symptoms, and the assessment of the quality of life in different stages of the COVID-19 pandemic based on an online nationwide survey. The study was based on a voluntary, anonymous, and authors' own questionnaire. The first section assesses sociodemographic status. Then, standardized psychometric tools were used such as the Beck Depression Inventory (BDI), the Generalized Anxiety Disorder Assessment (GAD-7), and the Manchester Short Assessment of Quality of Life (MANSA). The study was conducted in three stages corresponding to the waves of the COVID-19 pandemic in Poland. The survey involved 5,790 respondents; 2,457, 1,626, and 1,707 for the first, second, and third pandemic wave, respectively. It was found that anxiety and depressive symptoms increased as the pandemic progressed. There was no significant effect on the subjective quality-of-life assessment. Moreover, there was a gradual decrease in anxiety about being infected with COVID-19 as well as reduced adherence to the Minister of Health's recommendations. As the COVID-19 pandemic progressed, depressive and anxiety symptoms increased among Poles. Women, singles, and people with prior psychiatric treatment are more likely to develop the aforementioned symptoms.

scholarly journals Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Nicolas Vidart d'Egurbide Bagazgoïtia ◽  
Virginie Ehlinger ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt-Schuchert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Social Relationships ◽  
Young Adulthood ◽  
Associated Factors ◽  
Well Being ◽  
Psychological Well Being ◽  
The Social

Introduction: While most people with cerebral palsy (CP) will have a life expectancy similar to that of the general population, international research has primarily focused on childhood and adolescence; and knowledge about the quality of life (QoL) of young adults with CP, its trajectories, and associated factors remains scarce.Methods: This longitudinal study included young adults with CP living in five European regions and who had previously participated in the SPARCLE cohort as children and/or adolescents. Their QoL in the psychological well-being and social relationships domains was estimated using age-appropriate validated instruments (KIDSCREEN-52 in childhood/adolescence and WHOQOL-Bref in young adulthood). We used generalized linear mixed-effect models with random intercept to estimate long-term trajectories of QoL in both domains and to investigate whether severity of impairment, pain, and seizure influenced these trajectories. We sought to identify potentially different trajectories of QoL from childhood to adulthood using a shape-based clustering method.Results: In total, 164 young adults with CP aged 22–27 years participated in the study. Psychological well-being linearly decreased by 0.78 points (scale 0–100) per year (95% confidence interval (CI) −0.99 to −0.56) from childhood to young adulthood, whereas QoL in the social relationships domain increased (β coefficient 1.24, 95% CI 0.92–1.55). Severity of impairment was associated with reduced QoL in all life periods of the study (childhood, adolescence, and young adulthood): motor impairment with social relationships, and more nuancedly intellectual disability with psychological well-being and social relationships. At all periods, frequent pain significantly reduced psychological well-being, and seizures were associated with lower QoL in the social relationships domain. In both domains, we identified a group of individuals with CP who presented a reverse trajectory compared with the general QoL trajectory.Conclusion: Identification of QoL trajectories and their associated factors yields improved knowledge about the experience of individuals with CP until young adulthood. Further studies are needed to better understand the determinants that have the greatest influence on the different shapes of long-term trajectories of QoL.

Impact of Donepezil on Caregiving Burden for Patients With Alzheimer's Disease

2000 ◽  
Vol 12 (3) ◽  
pp. 389-401 ◽  
Author(s):  
Howard M. Fillit ◽  
Elane M. Gutterman ◽  
Rachelle L. Brooks
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Caregiver Burden ◽  
Nationwide Survey ◽  
Well Being ◽  
Measured Time ◽  
Burden Scale ◽  
Selection Factors

Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.

scholarly journals Depressive symptoms and perception of quality of life in Parkinson's disease

2009 ◽  
Vol 67 (2a) ◽  
pp. 203-208 ◽  
Author(s):  
Paula Scalzo ◽  
Arthur Kummer ◽  
Francisco Cardoso ◽  
Antonio Lucio Teixeira
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Depressive Symptoms ◽  
Well Being ◽  
Poor Quality ◽  
Life Questionnaire ◽  
Perception Of Quality ◽  
The Relationship

BACKGROUND: Depression has been proposed as a major contributor to poor quality of life (QoL) in Parkinson's disease (PD). OBJECTIVE: To evaluate the relationship between depressive symptoms and QoL in subjects with PD. METHOD: Beck Depression Inventary (BDI) was used to evaluate depressive symptoms and Parkinson's Disease Quality of Life Questionnaire (PDQ-39) to assess the perception of the QoL. RESULTS: Thirty seven patients (19 male/ 18 female) with a typical onset PD and mean disease duration of 7.7 years were studied. Higher scores on BDI correlated with poorer perception of the QoL. This association occurred at the expense of the following PDQ39 domains: mobility, activities of daily living, social support, cognition and emotional well-being dimensions. PD severity also correlated with QoL. CONCLUSION: Our study corroborates the assumption that depressive symptoms contributed significantly to QoL in PD.

scholarly journals Associations between Relationship Quality and Mental Health during COVID-19 in the United Kingdom

2021 ◽  
Vol 18 (6) ◽  
pp. 2869
Author(s):  
Christoph Pieh ◽  
Thomas Probst ◽  
Sanja Budimir ◽  
Elke Humer
Keyword(s):  
Quality Of Life ◽  
United Kingdom ◽  
Relationship Quality ◽  
Online Survey ◽  
Well Being ◽  
Poor Quality ◽  
Good Relationship ◽  
The United Kingdom ◽  
Poor Relationship

This study investigated the association of relationship quality with several well-being measures during the COVID-19 lockdown in the United Kingdom. An online survey was conducted on a study sample (n = 682) measuring relationship quality with the Quality of Marriage Index, and well-being measures including quality of life (WHO-QoL BREF), well-being (WHO-5), perceived stress (PSS-10), depressive (PHQ-9), and anxiety (GAD-7) symptoms. Good relationship quality goes along with higher scores in well-being (WHO-5), quality of life (WHO-QoL BREF), psychological domain, physical health, social relationships, environment, and reduced scores in stress (PSS-10), depressive (PHQ-9) and anxiety (GAD-7) symptoms compared with poor relationship quality (p < 0.001). Moreover, 21% of participants living in relationships with poor quality stated that they drink significantly more alcohol since the initial COVID-19 restrictions, compared to 10% of participants with good quality (p = 0.002). Living in a good relationship seems to be an advantage, whereas those with poor relationship quality are particularly more burdened and drink significantly more alcohol during the COVID-19 lockdown.

Industrial Infrastructure and Environmental Inequality in Monotowns

2019 ◽  
Vol 23 (8) ◽  
pp. 64-71
Author(s):  
V.Р. Vasiliev ◽  
V.A. Sushko ◽  
N.G. Dekhanova
Keyword(s):  
Quality Of Life ◽  
Satisfaction With Life ◽  
Healthy Lifestyle ◽  
Well Being ◽  
Environmental Problems ◽  
Poor Quality ◽  
Environmental Indicators ◽  
Environmental Inequality ◽  
The Impact

The article discusses current issues of environmental inequality in monotowns (single-industry cities), the industrial infrastructure associated with it, relating to the quality of life of the population. The nature and specificity of the impact of environmental indicators in monotowns on the socio-ecological well-being of the population, healthy lifestyle and longevity, as well as their well-being and satisfaction with life are discussed. As a research method, data from a sociological survey conducted by the authors in Norilsk in 2018 are presented. An important role in the study is assigned to such a component as the ecological situation in environmental problems. Among the most important environmental problems of the regions were identified health problems, air pollution, water bodies, poor quality food, an increase in landfills. The results showed a close relationship between environmental problems associated with industrial infrastructure and the quality of life of the population.

Urban Living And Quality Of Life: Exploring The Perception – Expectation Gap

2016 ◽  
Vol 1 (2) ◽  
Author(s):  
Smita Singh ◽  
Mehul Singh
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Poor Quality ◽  
Rapid Expansion ◽  
Life Assessment ◽  
Infrastructure Development ◽  
Urban Living ◽  
Tier Ii ◽  
Objective Indicators

Urban living, once synonymous with better amenities, infrastructural facilities and a higher standard of living, has gradually come under severe strain due to ill-planned and un-restrained growth. Infrastructure development has not kept pace with the rapid expansion of many a tier I and tier II city, leading to congestion, poor quality of water supply, sewerage and housing. The lack of basic amenities reflects on the poor quality of life being led by the average urban dweller. Quality of life is a complex, multi-dimensional concept which is open to diverse interpretations. In its broadest sense, the concept refers to all those factors which improve the 'well-being' of the people. It goes beyond the material indicators of money, access to good and services, infrastructure and so on. The concept is measured using both subjective and objective indicators. While the objective indicators of living standards are easy to measure, the subjective indicators, forming an integral part of an individual's perception of quality of life, are complex. The current study examines the optimal physical attributes desired by the residents of a tier II city. The 28-item scale has been adapted to the SERVQUAL model to study the expectation versus the perception of the quality of life of the residents of the city of Lucknow. The quality of life assessment of the residents can well provide a direction to the planners regarding the factors having the maximum gap and hence, the greatest impact on the urban resident.

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