scholarly journals The Impact of COVID-19 on Informal Caregivers in the US

2021 ◽  
pp. 87
Author(s):  
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Social Connectedness ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Early Research ◽  
The Us ◽  
The Impact

Background: Caregiver burden has negative effects on mental and physical health along with quality of life. Meanwhile, social and physical distancing protocols during the COVID-19 pandemic have created additional impacts on informal caregiving in a rapidly changing environment. Early research over the past year suggests that the pandemic has caused increased caregiver burden as well as caregiving intensity among these individuals. Purpose: Our primary purpose in this informational literature review is to describe the impacts of the pandemic on informal caregiver burden and the sudden shift in roles and responsibilities as a result of pandemic-related changes in caregiving. This review will describe emerging effects on various aspects of health among informal caregivers and explore the growing need to support unpaid caregiving during this time. Methods: A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and up-to-date mainstream resources were utilized. Notably, we focused on research published or released since March 2020, primarily rapidly reviewed studies, to align with the timing of the COVID-19 pandemic in the US. Results: Early research suggests that the pandemic has worsened caregiver burden and increased caregiving intensity and hours of care among unpaid, informal family caregivers. Reported health impacts include higher stress, pain, and depression, along with decreased social connectedness and quality of life. Notably, however, COVID-related research generally does not focus on the positive aspects of caregiving, such as its role as a source of purpose in life, creating an opportunity to explore ways to boost certain valuable personal resources among caregivers. Conclusions: Informal family caregivers face their own negative health outcomes and distress as a result of greater caregiver burden, intensity, and the changing landscape of caregiving during the ongoing COVID-19 pandemic. Immediate policy and support recommendations should be considered to alleviate informal caregiver burden and provide ongoing resources over the longer term. In addition, future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.

scholarly journals The Growing Burden of Informal Caregivers During COVID-19

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 962-963
Author(s):  
Stephanie MacLeod
Keyword(s):  
Quality Of Life ◽  
Health Outcomes ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Social Connectedness ◽  
Sleep Problems ◽  
Informal Caregivers ◽  
Negative Effects ◽  
Key Terms

Abstract Caregiver burden has negative effects on health outcomes and quality of life. Meanwhile, safety protocols during the COVID-19 pandemic created immediate impacts on informal caregiving with increasing burden on family caregivers. Our primary purpose was to describe the impacts of the pandemic on caregiver burden among informal caregivers, and their sudden shift in roles as a result. This review describes emerging effects on various aspects of health and explores future directions to support informal caregivers. A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and mainstream resources were utilized. We focused on research published since March 2020 to align with the timing of the pandemic in the US. Early research suggests that the pandemic has worsened caregiver burden among informal family caregivers. Reported health impacts include greater stress, pain, depression, sleep problems, and irritability, decreased social connectedness and quality of life. Informal family caregivers face negative health outcomes and distress as a result of greater caregiver burden and intensity during the COVID-19 pandemic. Immediate solutions are needed to alleviate this growing burden and provide ongoing support. Future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.

Costs, burden and quality of life associated with informal caregiving for children with Lymphoma attending a tertiary hospital in Ghana

2020 ◽  
Vol 23 (4) ◽  
pp. 165-172
Author(s):  
Cromwell Prince Dawson ◽  
Genevieve Cecilia Aryeetey ◽  
Samuel Agyei Agyemang ◽  
Kofi Mensah ◽  
Rebecca Addo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Social Protection ◽  
Primary Caregivers ◽  
Direct Costs ◽  
Cross Sectional ◽  
High Burden ◽  
The Impact

Introduction Primary family caregivers provide substantial support in the management of lymphoma, potentially affecting their quality of life and increasing household health care costs. Our aim was thus to determine the economic costs and quality of life of primary caregivers of children with lymphoma. Methods This cross-sectional study involved primary informal caregivers of children with lymphoma attending the pediatric cancer unit at Komfo Anokye Teaching Hospital. The study adopted a cost-of-illness approach to estimate the direct costs (medical and non- medical) incurred and indirect cost (productive losses) to caregivers over the one-month period preceding the data collection. Zarit Burden Interview was used to determine caregiver burden and EUROHIS-QoL tool was used to determine the quality of life of primary caregivers. Results The average cost of managing lymphoma in children was estimated to be US$440.32, 97% of which were direct costs. On average, caregiver burden was 26.3 on the scale of 0 to 48. About 94% of caregivers reported high burden, with more males reporting high burden. Overall, average quality of life among caregivers was 2.20 on the 1 to 5 range. Approximately 85% of respondents reported low quality of life, with females reporting lower quality of life than males. Discussion This study shows that lymphoma is associated with substantial cost and increased burden, and affects quality of life of family caregivers. Future studies can explore the impact of social protection interventions (in the form of health insurance) to reduce the household economic burden of managing lymphoma in children.

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Improving the Quality of Life of Family Caregivers of People with Alzheimer’s Disease through Virtual Communities of Practice: A Quasiexperimental Study

2021 ◽  
Vol 2021 ◽  
pp. 1-10
Author(s):  
Montse Romero-Mas ◽  
Anna Ramon-Aribau ◽  
Dyego Leandro Bezerra de Souza ◽  
Andrew M. Cox ◽  
Beni Gómez-Zúñiga
Keyword(s):  
Quality Of Life ◽  
Communities Of Practice ◽  
Family Caregivers ◽  
Virtual Communities ◽  
Negative Relationship ◽  
Before And After ◽  
Ambiguous Result ◽  
Virtual Communities Of Practice ◽  
The Impact

Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.

A Proposal of an innovative program for informal caregivers of patients with mood disorders

2017 ◽  
Vol 41 (S1) ◽  
pp. S603-S603
Author(s):  
J. Cabral ◽  
C. Barreto Carvalho ◽  
P. Castilho Freitas ◽  
C. Pato
Keyword(s):  
Quality Of Life ◽  
Mood Disorders ◽  
Negative Impact ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Well Being ◽  
Control Group ◽  
Compassion Focused Therapy ◽  
The Impact

IntroductionIntervention with informal caregivers (IC) of psychiatric patients is internationally recognized as relevant and a priority. However, the existing responses in this area are still insufficient, especially regarding caregivers of individuals with mood disorders (MD). Mindfulness and compassion focused therapy have proven to be an effective approach in stress reduction and in improving emotional and social well-being of caregivers of patients with other conditions. However, no studies testing these new approaches in IC of patients with MD have been carried out. The objective of this work is to present a research project that aims to develop, implement and empirically test the effectiveness of an innovative group program to help informal caregivers of individuals with mood disorders to cope with the negative impact of the disease and reduce caregiver burdens.MethodsThe design of this experimental study to test the program's efficacy is a non-randomised controlled trial (nrct) with 12 months follow-up, with a mixed assessment methodology (quantitative and qualitative analysis). A sample of 60 informal caregivers of individuals with chronic MD will be constituted (n = 30 Control group; n= 30 Experimental group).ResultsWe expect the program to promote significant changes in participants in terms of several emotional variables (eg: burden, stress, resilience, compassion and quality of life).ConclusionsFurther efforts to continue studying the impact of interventions in caregivers should be carried out, as a way to improve the quality of life of caregivers and their ability to provide informal care to MD patients.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals Cancer-Related Debt and Mental-Health-Related Quality of Life among Rural Cancer Survivors: Do Family/Friend Informal Caregiver Networks Moderate the Relationship?

2020 ◽  
Vol 61 (1) ◽  
pp. 113-130
Author(s):  
Emily Hallgren ◽  
Theresa A. Hastert ◽  
Leslie R. Carnahan ◽  
Jan M. Eberth ◽  
Scherezade K. Mama ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cancer Survivors ◽  
Social Connectedness ◽  
Informal Caregiver ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Caregiver Network

Social connectedness generally buffers the effects of stressors on quality of life. Is this the case for cancer-related debt among rural cancer survivors? Drawing on a sample of 135 rural cancer survivors, we leverage family/friend informal caregiver network data to determine if informal cancer caregivers buffer or exacerbate the effect of cancer-related debt on mental-health-related quality of life (MHQOL). Using data from the Illinois Rural Cancer Assessment, a survey of cancer survivors in rural Illinois, we estimate the association between cancer-related debt and MHQOL and whether informal caregiver network size and characteristics moderate this association. Over a quarter of survivors (27%) reported cancer-related debt, and those who did reported worse MHQOL. However, this association only held for survivors who had an informal caregiver network. These findings supplement what is already known about the role of social connectedness in cancer survivors’ health outcomes. We offer possible explanations for these findings.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

The Impact of Restless Legs Syndrome/ Willis–Ekbom Disorder on Quality of Life

2013 ◽  
Vol 8 (2) ◽  
pp. 97 ◽  
Author(s):  
Aadi Kalloo ◽  
Charlene E Gamaldo ◽  
Anthony B Kwan ◽  
Rachel E Salas ◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Restless Legs Syndrome ◽  
Sleep Disruption ◽  
Iron Supplements ◽  
Prevalence Studies ◽  
Adverse Side Effects ◽  
Restless Legs ◽  
The Us ◽  
The Impact

Restless legs syndrome (RLS), also known as Willis–Ekbom Disorder (WED), is a condition associated with nocturnal sensorimotor symptoms that can result in significant sleep disruption. RLS is a prevalent condition, affecting an estimated 3.9–14.3 % of the US population. Despite the most recently reported prevalence studies, many experts in the field still believe RLS is a generally underdiagnosed condition. RLS can negatively affect a patient’s quality of life (QoL) across several domains, such as daytime sleepiness, decreased general health, decreased immune function, stress and mood. Of those patients with moderate-to-severe symptoms that require treatment, the currently available therapeutic options (e.g. iron supplements, dopamine agonists, benzodiazepines, opioids and anticonvulsants) can also come with adverse side effects that can further impact QoL. The purpose of this article is to examine the QoL deficits experienced by RLS patients.

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