The Growing Burden of Informal Caregivers During COVID-19

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.

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

International Journal of Aging Research ◽

10.28933/ijoar-2021-07-0705 ◽

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.

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

Journal of Medical Internet Research ◽

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

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Health-Related Quality of Life and Caregiver Burden among Peritoneal Dialysis Patients and Their Family Caregivers in Japan

Peritoneal Dialysis International ◽

10.1177/089686080302302s42 ◽

2003 ◽

Vol 23 (2_suppl) ◽

pp. 200-205 ◽

Cited By ~ 33

Author(s):

Setsuko Shimoyama ◽

Orie Hirakawa ◽

Keiko Yahiro ◽

Toshimi Mizumachi ◽

Andrea Schreiner ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Peritoneal Dialysis ◽

Family Caregivers ◽

Caregiver Burden ◽

Short Form ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Objective Recent studies have found that patients with chronic renal failure suffer from depression and other symptoms of decreased mental health. However, little is know about caregiver burden and mental health among patients’ families. In the present study, we examined the relationship in Japan between peritoneal dialysis (PD) patients and caregivers with regard to health-related quality of life (HRQOL) and caregiver burden. Method In March of 2002, we recruited 60 subjects—26 patients on continuous ambulatory peritoneal dialysis (CAPD), and 34 caregivers—from a PD patient support group in southern Japan. We used the Kidney Disease Quality of Life Short Form (KDQOL-SF) and the Medical Outcomes Study Short Form 36 (SF-36) to measure HRQOL. We used the Zarit Burden Interview (ZBI) to measure caregiver burden. Data was also collected on each patient's duration of illness, treatment modality, age, sex, and medical history. All data were collected by mail surveys. Results Mean age of the PD patients was 48.2; mean age of the caregivers was 46.6. Mean caregiver burden on the ZBI was 14.1, which is considerably lower than that reported among caregivers for patients with dementia or stroke. Caregivers and patients both rated their general health and vitality among the lowest of the eight dimensions on the KDQOL-SF. In addition, patients scored lower than a normative population in all dimensions and significantly lower than caregivers in the dimensions of role physical functioning, role emotional functioning, and social functioning. Compared to national normative data for their age group, caregivers scored substantially lower in general health, vitality, and mental health. Conclusions Patients on CAPD are at risk for social role dysfunction, and their caregivers are at risk for decreased mental health. Further research is needed to identify interventions that can improve the HRQOL of CAPD patients and their family caregivers.

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Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life

Jornal Brasileiro de Pneumologia ◽

10.1590/s1806-37562016000000177 ◽

2017 ◽

Vol 43 (1) ◽

pp. 18-23 ◽

Cited By ~ 12

Author(s):

Eliana Lourenço Borges ◽

Juliana Franceschini ◽

Luiza Helena Degani Costa ◽

Ana Luisa Godoy Fernandes ◽

Sérgio Jamnik ◽

...

Keyword(s):

Quality Of Life ◽

Lung Cancer ◽

Family Caregivers ◽

Caregiver Burden ◽

Early Stage ◽

Cancer Stage ◽

Advanced Stage ◽

Lung Cancer Patients ◽

Advanced Stage Cancer

ABSTRACT Objective: Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL) of lung cancer patients have on caregiver burden. Methods: This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36). Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV) plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50). Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. Results: We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Conclusions: Caregiver burden is more affected by patient QoL than by lung cancer stage.

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Assessment of the Perceived Burden of Care and Quality of Life among Family Caregivers of Patients Diagnosed with chronic Illnesses at Home Health Care Centers

Community Medicine & Public Health Care ◽

10.24966/cmph-1978/100087 ◽

2021 ◽

Vol 8 (1) ◽

pp. 1-7

Author(s):

Ghada Abdul Qayoum Amir ◽

Keyword(s):

Quality Of Life ◽

Family Caregivers ◽

Caregiver Burden ◽

Home Health Care ◽

Home Health ◽

Chronic Illnesses ◽

Burden Of Care ◽

Perceived Burden ◽

Health Care Centers

A Caregiver burden is a multi-layered phenomenon involving various factors for both patients and caregivers. It is imperative that the needs and concerns of the caregiver are not forgotten or neglected in the rush to provide greater comfort for the person with the illness.

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

Rev Rene ◽

10.15253/2175-6783.20212261752 ◽

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.

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Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Brain Sciences ◽

10.3390/brainsci12010111 ◽

2022 ◽

Vol 12 (1) ◽

pp. 111

Author(s):

Kristina Rosqvist ◽

Anette Schrag ◽

Per Odin ◽

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Linear Regression ◽

Caregiver Burden ◽

Male Patient ◽

Late Stage ◽

Informal Caregivers ◽

Regression Analyses ◽

Patient Gender

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

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