scholarly journals Informal caregiver support needs and burden: a survey in Lithuania

BMJ Open ◽  
2022 ◽  
Vol 12 (1) ◽  
pp. e054607
Author(s):  
Ieva Biliunaite ◽  
Evaldas Kazlauskas ◽  
Robbert Sanderman ◽  
Gerhard Andersson
Keyword(s):  
Informal Care ◽  
Caregiver Burden ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
Interesting Case ◽  
Support Needs ◽  
Caregiver Support ◽  
High Burden ◽  
The Impact

IntroductionA demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers’ experiences and needs.ObjectivesThe main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregiver’s and care receiver’s well-being was investigated.MethodsThe study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).ResultsA total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.ConclusionMost of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

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.

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 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.

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 NOTEWORTHY: THE IMPACT OF A CHOIR FOR OLDER ADULTS WITH DEMENTIA ON THE WELL-BEING AND QUALITY OF LIFE OF CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S752-S752
Author(s):  
Debra J Sheets ◽  
Stuart W MacDonald ◽  
Andre Smith ◽  
Mary Kennedy
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Health Indicators ◽  
Well Being ◽  
Community Dwelling ◽  
Caregiver Support ◽  
Economic Implications ◽  
Health Quality ◽  
The Impact

Abstract Informal caregivers provide 80% of the care needed to support community-dwelling older adults with dementia. Over time caregivers often face adverse effects on their health, quality of life and well-being; particularly those caring for someone with dementia. This study examines the impact of participation in the Voices in Motion (ViM) choir on caregiver burden, mood and quality of life. A measurement burst approach was used to investigate intraindividual variability on key psychosocial and health indicators. Results indicate that choir participation significantly improves caregiver well-being (e.g. mood, burden) and quality of life. Findings suggest that choirs offer significant caregiver support and respite. The discussion focuses the public policy and on the potential economic implications which suggests a shift is needed in the services available to older adults with dementia and their caregivers.

scholarly journals Long-Term Socioeconomic Impact of Informal Care Provided to Patients with Pacemakers: Remote vs. Conventional Monitoring

Healthcare ◽  
2020 ◽  
Vol 8 (2) ◽  
pp. 175
Author(s):  
Cesar Leal-Costa ◽  
Antonio Lopez-Villegas ◽  
Daniel Catalan-Matamoros ◽  
Emilio Robles-Musso ◽  
Knut Tore Lappegård ◽  
...  
Keyword(s):  
Informal Care ◽  
Remote Monitoring ◽  
Personal Autonomy ◽  
Informal Caregivers ◽  
Personal Characteristics ◽  
Socioeconomic Impact ◽  
Sociodemographic Characteristics ◽  
Long Term Effects ◽  
The Impact

The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers. Data were collected at 12 and 60 months after PM implantation. The patients in the study were assigned to two different groups: remote monitoring (RM) and conventional monitoring (CM). The “Disability, personal autonomy, and dependency situations survey” (EDAD) was administered to collect information on sociodemographic characteristics, time, care difficulties, health status, professional aspects, and impact on economic, family, or leisure aspects of the main caregivers providing care to patients with pacemakers. After five years, 55 patients completed the study (RM = 21; CM = 34). The average age was 63.14 years (SD = 14.90), 96% of them were women, and the most predominant marital status was married (72%). Informal caregivers lived in the homes of the patients in 70% of cases, and 88% indicated that they had to provide care six to seven days a week. The average cost per patient during the monitoring period studied was 13.17% lower in the RM group than in the CM group, and these differences were not statistically significant (p = 0.35). This study found similar results in the two groups under study with respect to sociodemographic characteristics, workload, time, and problems associated with health, leisure and family members. The costs associated with care were higher in the CM group; however, these differences were not statistically significant.

scholarly journals Personalized Care Plan for non dependent old persons decrease significantly caregivers’ burden

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
S Arlotto ◽  
S Gentile ◽  
A C Durand ◽  
S Bonin Guillaume
Keyword(s):  
Social Support ◽  
Caregiver Burden ◽  
Daily Living ◽  
Care Plan ◽  
Activity Of Daily Living ◽  
High Burden ◽  
Personalized Care ◽  
Frailty Status ◽  
The Impact ◽  
At Home

Abstract Objectives Informal care provided by family caregivers in old persons is associated to a high risk of burden and poor health status. This study aimed to analyze the impact of a Personal Care Plan (PCP) attributed to non dependant old persons living in the community on caregiver burden, satisfaction and frailty. Methods This non interventional longitudinal study was performed in the south East area of in France: olds persons asking for a PCP (>70 years old, with no disability and no severe chronic disease, living at home) and their caregiver were included with a 6-months follow up. Dyads were visited at home by social workers. Caregivers Burden has been assessed with Mini-Zarit and frailty status with FiND (Frail Non-Disable). Results 876 dyads (old persons: female 77.6%, aged 82.2 ± 5.8 years old; caregivers: 64.5% female, 29% spouse, 61% children; 64% with frailty and 38% with high burden; high burden being significantly associated with frailty) were eligible for a PCP. Among them, 564 PCP were financed, mainly: housekeeping and meal preparation. For those old persons who had PCP, near half of their caregiver decreased the time spent to these activities. With the PAP, 88% of the caregiver had a lower burden level, only 6% had a persistent high burden; 61,5% were totally satisfied. Frailty status was not modified. Discussion Our study highlight that the burden occurs also in non dependent old persons’s caregivers. Social support implementation for activity of daily living had a major impact on the burden but not on the caregiver frailty, which means that determinants of caregiver’s frailty are more complex and further studies are needed. Key messages Social support implementation for activity of daily living have a major impact on the burden; the burden occurs also in non dependent old persons’s caregivers. Personalized plan implemented to support activity of daily living improve caregiver burden even in non-dependent old persons.

scholarly journals Empathic Accuracy in Chronic Pain: Exploring Patient and Informal Caregiver Differences and Their Personality Correlates

Medicina ◽  
2019 ◽  
Vol 55 (9) ◽  
pp. 539
Author(s):  
Suso-Ribera ◽  
Martínez-Borba ◽  
Viciano ◽  
Cano-García ◽  
García-Palacios
Keyword(s):  
Chronic Pain ◽  
Social Factors ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Empathic Accuracy ◽  
Pain Interference ◽  
Pain Clinic ◽  
Accurate Estimation ◽  
The Impact ◽  
Pain Patients

Background and objectives: Social factors have demonstrated to affect pain intensity and quality of life of pain patients, such as social support or the attitudes and responses of the main informal caregiver. Similarly, pain has negative consequences on the patient’s social environment. However, it is still rare to include social factors in pain research and treatment. This study compares patient and caregivers’ accuracy, as well as explores personality and health correlates of empathic accuracy in patients and caregivers. Materials and Methods: The study comprised 292 chronic pain patients from the Pain Clinic of the Vall d’Hebron Hospital in Spain (main age = 59.4 years; 66.8% females) and their main informal caregivers (main age = 53.5 years; 51.0% females; 68.5% couples). Results: Patients were relatively inaccurate at estimating the interference of pain on their counterparts (t = 2.16; p = 0.032), while informal caregivers estimated well the patient’s status (all differences p > 0.05). Empathic accuracy on patient and caregiver status did not differ across types of relationship (i.e., couple or other; all differences p > 0.05). Sex differences in estimation only occurred for disagreement in pain severity, with female caregivers showing higher overestimation (t = 2.18; p = 0.030). Patients’ health status and caregivers’ personality were significant correlates of empathic accuracy. Overall, estimation was poorer when patients presented higher physical functioning. Similarly, caregiver had more difficulties in estimating the patient’s pain interference as patient general and mental health increased (r = 0.16, p = 0.008, and r = 0.15, p = 0.009, respectively). Caregiver openness was linked to a more accurate estimation of a patient’s status (r = 0.20, p < 0.001), while caregiver agreeableness was related to a patient’s greater accuracy of their caregivers’ pain interference (r = 0.15, p = 0.009). Conclusions: Patients poorly estimate the impact of their illness compared to caregivers, regardless of their relationship. Some personality characteristics in the caregiver and health outcomes in the patient are associated with empathic inaccuracy, which should guide clinicians when selecting who requires more active training on empathy in pain settings.

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

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