Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment

2020 ◽  
Vol 5 (5) ◽  
pp. 1282-1289 ◽  
Author(s):  
Samantha E. Shune ◽  
Ashwini Namasivayam-MacDonald
Keyword(s):  
Support Groups ◽  
Caregiver Burden ◽  
Family System ◽  
Informal Caregivers ◽  
Well Being ◽  
Third Party ◽  
Perceived Support ◽  
Entire Family ◽  
Substantial Impact ◽  
Health And Well Being

Purpose The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.

Supporting Employee Health at Work: How Perceptions Differ Across Wage Category

2021 ◽  
pp. 089011712110244
Author(s):  
Kristi Rahrig Jenkins ◽  
Emily Stiehl ◽  
Bruce W. Sherman ◽  
Susan L. Bales
Keyword(s):  
Organizational Support ◽  
Supervisor Support ◽  
Well Being ◽  
Perceived Support ◽  
Linear Regression Models ◽  
Job Responsibilities ◽  
Loved One ◽  
Negatively Associated ◽  
Workplace Stressors ◽  
Health And Well Being

Purpose: This study examines the association between sources of stress and perceptions of organizational and supervisor support for health and well-being. Design: Retrospective, cross-sectional analysis. Setting: Large university in the mid-western United States. Sample: This study focused on university employees with complete data for all variables (organizational support/N = 19,536; supervisor support/N = 20,287). Measures: 2019 socioeconomic and demographic characteristics, count of chronic conditions, sources of stress and perceptions of organizational and supervisor support. Analysis: For the multivariate analyzes, linear regression models were analyzed separately by wage bands (low ≤$46,100; middle >$46,100-$62,800; high >$62,800). Results: For all employees, workplace stressors, including problematic relationships at work and heavy job responsibilities, were negatively associated with perceptions of supervisor and organizational support. In comparison, the most salient home-based stressors were negatively associated with perceptions of supervisor support for the lowest-wage band (the death of a loved one, b = −0.13) and middle-wage band (personal illness or injury, b = −0.09), while the one for the highest-wage band (illness or injury of a loved one, b = 0.07) was positively associated with perceptions of supervisor support. Conclusion: Stressful job responsibilities and work relationships are associated with lower perceptions of supervisor and organizational support for health and well-being across all wage bands. Favorable perceived support for personal stressors only among high wage earning employees may suggest a need for improved equity of perceived support for these stressors among lower wage workers.

scholarly journals Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach
Keyword(s):  
Negative Impact ◽  
Living Arrangement ◽  
Informal Caregivers ◽  
Well Being ◽  
Rapid Review ◽  
People With Dementia ◽  
Psychosocial Resilience ◽  
Quantitative Descriptive ◽  
The Impact ◽  
Health And Well Being

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

The impact of fly-in, fly-out (FIFO) on the health and well-being of employees: what organisations can do to mitigate the risks and improve outcomes

2020 ◽  
Vol 60 (2) ◽  
pp. 397
Author(s):  
Elizabeth Brook ◽  
Melanie Freeman ◽  
Graeme Ditchburn
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Perceived Support ◽  
Work Family Conflict ◽  
Code Of Practice ◽  
Increased Risk ◽  
Work Family ◽  
The Impact ◽  
Levels Of Support ◽  
Health And Well Being

Concerns about the increased risk to mental health in fly-in, fly-out (FIFO) workers in the construction and resources industries led to increased public and government scrutiny, resulting in Western Australia’s adoption of a code of practice. In general, research has found that a higher incidence of psychological distress in FIFO workers has resulted from high compression rosters and work–family conflict, as well as feelings of isolation. Risk controls, such as perceived levels of support, have been found to be significantly related to improved mental health and organisational outcomes. Organisations need to address the non-financial needs of their workers and look to develop their perceived support, job satisfaction and adjustment to the FIFO lifestyle. This paper outlines practical risk controls and interventions organisations can take to improve psychological and organisational outcomes.

The importance of support and forms of kinesiotherapeutic activity of family members of persons affected by Parkinson’s disease

2019 ◽  
Vol 6 (1) ◽  
pp. 1-7
Author(s):  
Aleksandra Wróbel ◽  
Piotr Wróbel ◽  
Ewa Otfinowska
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Support ◽  
Family System ◽  
Well Being ◽  
Entire Family ◽  
Permanent Disability ◽  
The Impact

Parkinson’s disease is a chronic and progressive degenerative disease of the central nervous system. The disorder is classified as extra pyramidal system diseases. In order to improve the patient’s condition and increase the level of quality of life, pharmacological treatment and rehabilitation are used to eliminate progressive disability. The help of the surrounding environment affects not only the course of the disease, but above all the emotional well-being of the patient. Family support and its participation in the whole therapeutic process greatly optimize its results. The aim of this work is to present the most important issues regarding kinesiotherapy in Parkinson’s disease and to demonstrate the impact of the involvement of the whole family system on the course and results of therapy. Kinesiotherapy as an element of treatment plays a very important role in the process of improving and adapting the patient to perform daily nursing activities. Kinesiotherapeutic treatments have not only a significant impact on the symptoms occurring in the course of the disease, but also on the overall health. The individual selection of therapy and the involvement of the entire team of therapists is extremely important in eliminating both movement and extrinsic symptoms. The correct implementation of the physiotherapist’s recommendations, the patient’s involvement, as well as the active participation of the patient’s environment, is a condition for the effectiveness of the entire process of maintaining health and fitness. Kinesiotherapy prevents permanent disability and helps maintain the longest possible independence and good quality of life. The involvement of the entire family support system has an impact on the results of the therapy.

scholarly journals Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

10.2196/21466 ◽  
2021 ◽  
Vol 23 (4) ◽  
pp. e21466
Author(s):  
Ieva Biliunaite ◽  
Evaldas Kazlauskas ◽  
Robbert Sanderman ◽  
Inga Truskauskaite-Kuneviciene ◽  
Austeja Dumarkaite ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Behavioral Therapy ◽  
Caregiver Burden ◽  
Behavioral Therapy ◽  
Informal Caregivers ◽  
Well Being ◽  
Cognitive Behavioral ◽  
World Health ◽  
Quality Of Life Scale

Background Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content. Conclusions This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724

scholarly journals Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

2020 ◽  
Author(s):  
S. M. C. H. Langenberg ◽  
H. Poort ◽  
A. N. M. Wymenga ◽  
J. W. de Groot ◽  
E. W. Muller ◽  
...  
Keyword(s):  
Social Support ◽  
Colon Cancer ◽  
Adjuvant Chemotherapy ◽  
Caregiver Burden ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
Related Quality ◽  
Health Related

Abstract Introduction Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment.

Association between Mobile App Use and Caregivers’ Support System, Time Spent on Caregiving, and Perceived Well-being: A Survey Study (Preprint)

2021 ◽  
Author(s):  
Pelin Ozluk ◽  
Rebecca Cobb ◽  
Alyson Hoots ◽  
Gosia Sylwestrzak
Keyword(s):  
Caregiver Burden ◽  
Support System ◽  
Time Use ◽  
Perceived Health ◽  
Well Being ◽  
Mobile App ◽  
Support Network ◽  
Percentage Points ◽  
System Time ◽  
Health And Well Being

BACKGROUND Caregiving is a vast and growing social issue. High levels of caregiver burden is associated with an increased risk of health problems as well as emotional and financial strain in caregivers. Using mobile technology to address caregiver needs has been on the rise; however, there is limited evidence on caregiver experience and outcomes of using such technologies. OBJECTIVE We evaluated the association between using a mobile app that facilitates coordinating caregiving tasks (i.e., meal preparation, respite care, pet care, transportation) among a caregiver’s personal support network on outcomes related to the caregiver’s support system, time use (measures of caregiver’s time-spent on caregiving tasks and how much time they had to take off from work to attend planned and/or unplanned caregiving tasks), perceived productivity, and perceived health and well-being. METHODS We conducted two surveys of caregivers to assess the within-participant change in outcomes for caregivers after six-week use of the mobile app (n=176) between March 30, 2020 and May 11, 2020. The surveys contained questions about outcomes in the following three domains: (i) caregiver’s support system, (ii) time use and perceived productivity, (iii) perceived health and well-being. We present results from the linear probability models and two-sided paired t-tests. RESULTS App use was significantly associated with decreasing the probability of doing more than half of the caregiving tasks alone by 9.1 percentage points (SE=0.04; P<0.05) and increasing the probability of at least one person helping the primary caregiver by 8.0 percentage points (SE=0.035; P<0.05). The app use was also associated with improving time use of the primary caregiver who took significantly less time off work to attend to caregiving by 12.5 percentage points (SE=0.04; P<0.01) and decreased the probability of spending more than 30 hours weekly on caregiving by 9.1 percentage points (SE=0.04; P<0.05). Other findings on the positive impact of the app included a decrease in the probability of reporting feeling overwhelmed by caregiving tasks by 12.5 percentage points (SE 0.04; P=.003) and a decrease in the probability of reporting negative health effects due to caregiving by 6.8 percentage points (SE 0.04; P=.07). CONCLUSIONS App use was associated with improvements in seven of eleven caregiver outcomes: their support system, time spent on caregiving, as well as perceived health and well-being. These findings provide encouraging evidence that the mobile app evaluated can significantly reduce caregiver burden through leveraging a caregiver’s support network.

Animal welfare: the five freedoms and the free market

1993 ◽  
Vol 17 ◽  
pp. 45-49
Author(s):  
A. J. F. Webster
Keyword(s):  
Free Market ◽  
Well Being ◽  
Animal Production ◽  
Third Party ◽  
Farm Animals ◽  
Meat Production ◽  
Normal Behaviour ◽  
Health Security ◽  
Five Freedoms ◽  
Health And Well Being

AbstractIn a free market economy the consumer and not the producer usually dictates the product and the means of production. Meat production however involves, as a third party, the animals themselves whose rights are not protected by the free market. To ensure and improve the welfare of farm animals it is necessary first to define and analyse the factors that contribute to an animal's sense of health and well-being. The first stage of analysis can be embraced by the five freedoms which define standards of nutrition, comfort, health, security and normal behaviour. Right action to ensure the five freedoms requires research, legislation and education. This paper suggests reasons why the contribution of research and legislation to improved welfare has, so far, been small. It further suggests that proposed future legislation may be too crude an instrument to ensure improvements in something so complex as an animal's perception of the world. The most promising approach is to educate the consumer towards an understanding of animal production that is more in tune with reality and less susceptible to imagery, be it the false ‘farm fresh’ image of the producers or the ‘factory’ image of the anti-farming lobby. My simple plea is for honesty in animal production, an honesty that recognizes the realities of pain and death but which allows both the farmer and his animals to live with dignity.

scholarly journals Burden and quality of life of informal caregivers of children with cerebral palsy

Rev Rene ◽  
2021 ◽  
Vol 22 ◽  
pp. e61752
Author(s):  
Abigail Oluwadunni Davis ◽  
Oladapo Michael Olagbegi ◽  
Kayode Orekoya ◽  
Mathew Adekunle ◽  
Olufemi Oyeleye Oyewole ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Caregiver Burden ◽  
Informal Caregivers ◽  
Well Being ◽  
Cross Sectional Survey ◽  
Strain Index ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.

scholarly journals Sibling relationships and their role in human life

2021 ◽  
Vol 10 (4) ◽  
pp. 147-156
Author(s):  
M.V. Bulygina
Keyword(s):  
Life Satisfaction ◽  
Prosocial Behavior ◽  
Sibling Relationships ◽  
Family System ◽  
Human Life ◽  
Well Being ◽  
Entire Family ◽  
Sibling Relations ◽  
High Degree ◽  
Brothers And Sisters

The article presents the results of studies of sibling relations from different approaches. The articles included in this review concern the nature of relationships with brothers and sisters at different ages, its role in the development of aggressive and prosocial behavior, attitudes to oneself and one’s body, life satisfaction. Sibling relationships are analyzed in the context of the entire family system. It is noted that sibling relationships are involuntary, stable and characterized by a high degree of spontaneity. It is shown that the nature of communication with brothers and sisters is associated with the well-being of a person and the peculiarities of his/her adaptation in childhood, adolescence and adulthood.

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