OS09.3.A Caregiver burden of glioma patients: the impact of informal care

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii12-ii12
Author(s):  
R van den Borg ◽  
A Weerdesteijn-Prinsen ◽  
C M Nijboer ◽  
T J Postma ◽  
M C M Kouwenhoven ◽  
...  
Keyword(s):  
The Netherlands ◽  
Caregiver Burden ◽  
Household Tasks ◽  
High Burden ◽  
Additional Information ◽  
Continuous Care ◽  
The Social ◽  
Tumor Center ◽  
Patients Experience ◽  
The Impact

Abstract BACKGROUND Each year 1.300 new patients are diagnosed with a glioma in the Netherlands. Patients experience a substantial physical and cognitive decline during the course of the disease. The impact of neurological deterioration on social and family life is substantial. Caregivers give high demanding care to their partners for long periods of time, while they combine this care with many other tasks, as: care for children, administrative household tasks and securing the families financial situation through work. As a consequence caregivers experience a high burden.In this study, we evaluated the degree of caregiver burden, its impact on daily life and the preferred support needed. With better insight in caregivers needs, support for the caregivers can be optimized. MATERIAL AND METHODS The study was conducted at the Brain Tumor Center Amsterdam, the Netherlands, between March and June 2019. We prospectively collected information using two Dutch questionnaires: the “Experienced Burden of Care” (EDIZ) and the “Features of Caregiver Care” questionnaire. The questionnaires were handed out to 93 caregivers of glioma patients at the outpatient clinic. The data were analysed using descriptive statistics. RESULTS In the studied population, 36,6% of caregivers experienced a high burden (score 7–9 on EDIZ questionnaire). The features of caregiver care questionnaire showed that 11,2% was overloaded (score >31), and 57,3% nearly overloaded (score 22–30). Caregivers indicated that the continuous care for the patient and lack of time for their own needs were a major cause for the high burden they experienced. One third of the caregivers reported a substantial change in physical, mental and behavioural functioning of the patient during the study. Caregivers experienced a lack of support and information; they felt a need for more psychological support (34,9%) and advice how to deal with the cognitive and behavioural decline of the patient (33,3%). The need for information of caregivers varied, ranging from information on the course of the disease (28,6%) to information on the social support act (23,8%). The question when to receive additional information was answered by most caregivers to a ‘self-chosen point in time’ instead of set time points by the medical team. CONCLUSION The burden of caregivers of glioma patients is high; nearly 70% of caregivers are even (nearly) overloaded. Caregivers need information and support on different aspects of the disease. As these aspects vary between different caregivers and possibly during the disease course, support to caregivers should be structurally assessed. A better understanding of the caregivers needs in combination with active support could prevent dropout of caregivers and improve the quality of life of both caregivers and patients.

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.

Abstract P211: Stroke Recovery Navigator to Improve Post Stroke Recovery

Stroke ◽  
2021 ◽  
Vol 52 (Suppl_1) ◽  
Author(s):  
Erin Rindels ◽  
Anna Taylor ◽  
Aurora Quigley ◽  
Keyword(s):  
Social Support ◽  
Caregiver Burden ◽  
Statistical Significance ◽  
Intervention Group ◽  
Demographic Characteristics ◽  
Stroke Recovery ◽  
Control Group ◽  
Post Discharge ◽  
Additional Information ◽  
The Impact

Social support impacts recovery after stroke. Patient centered navigation programs provide social support and have shown benefit with other patient populations. The purpose of this study is to determine if there is a difference in outcomes for stroke survivors and caregivers who receive navigation services post-discharge. The study used a multi-center quasi-experimental before-after design to examine the impact of a telephone-based stroke navigation. Selected recruitment sites were nine facilities without navigation programs. Facilities provided information to survivors and caregivers about Stroke Recovery Navigator (SRN) prior to discharge and made referrals to the program. Participants were randomized into control and intervention groups using a computer-generated coin flip. Navigators completed telephone assessments within a week of referral. Navigators received the following trainings: Patient Navigation Fundamentals, motivational interviewing, and mental health first aid. The Reintegration to Normal Living (RNLI) scale was completed by all survivors and the Zarit Caregiver Burden scale was completed by all caregivers. The control group completed the initial and final assessments using these tools. In addition to these assessments, the intervention group received an individualized navigation plan and weekly contact by the SRN. The study randomized 301 individuals (82 caregivers, 219 survivors), with completion rate of 32%. Caregiver demographic characteristics and baseline caregiver burden scores were not statistically significant. Caregiver burden in the intervention group were lower compared to the control group, but not statistically significant (p=0.25). Demographic characteristics for survivors were similar between groups. RNLI score for survivors was slightly higher for the intervention group (p<0.10). To achieve statistical significance additional participants were needed. In conclusion differences in quality of life for survivors and caregivers were not statistically significant between the groups. Additional information on the benefits of an SRN program is needed to support its implementation. However, important lessons were learned to improve such program and its design.

scholarly journals Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials

2016 ◽  
Vol 9 ◽  
pp. HSI.S39433 ◽  
Author(s):  
Charles D. Phillips
Keyword(s):  
Cognitive Function ◽  
Physical Function ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Amyloid Plaques ◽  
Caregiver Time ◽  
The Social ◽  
New Treatments ◽  
Clinical Trails ◽  
The Impact

A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete.

scholarly journals The Experiences of Home Care Nurses in Regard to the Care of Vulnerable Populations: A Qualitative Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 21
Author(s):  
Isabel María Fernández-Medina ◽  
María Dolores Ruíz-Fernández ◽  
Felisa Gálvez-Ramírez ◽  
Evangelina Martínez-Mengíbar ◽  
Manuel Eduardo Ruíz-García ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
Vulnerable Populations ◽  
Vulnerable Population ◽  
Structured Interviews ◽  
Continuous Care ◽  
Vulnerable Patients ◽  
The Social ◽  
The Impact ◽  
Home Care Nurses

Home care nurses have become the main references in home care for vulnerable patients. In patients’ homes they offer comprehensive and continuous care to both the vulnerable population and their families. The aim of this qualitative study was to explore experiences and perspectives of home care nurses regarding the care of vulnerable patients in Spain. We conducted in-depth semi-structured interviews with 15 home care nurses working with a vulnerable population. From a data analysis, two themes and four subthemes emerged: (1) “barriers to providing home care to vulnerable populations”, with the following subthemes: “the particularities of the patient and their home caregivers” and “perceived barriers for the involvement of home care nurses in the care”; and (2) “the emotional cost of home care” with the subthemes “home care is draining for caregivers” and “the impact of home care on the home care nurses”. These findings show us that nurses face a number of difficulties in home care for vulnerable patients. The training of nurses in certain competencies and skills by the social health services would enhance the quality of care offered to these patients.

scholarly journals Dampak Covid-19 terhadap Perubahan Psikologis, Sosial dan Ekonomi Pasien Covid-19 di Kelurahan Dendang, Langkat, Sumatera Utara

2021 ◽  
Vol 1 (1) ◽  
pp. 56-69
Author(s):  
Suaibatul Aslamiyah ◽  
Nurhayati
Keyword(s):  
General Population ◽  
Social Impact ◽  
Virus Disease ◽  
Economic Conditions ◽  
Economic Aspects ◽  
Economic Changes ◽  
The Social ◽  
Food Needs ◽  
Patients Experience ◽  
The Impact

The Corona Virus Disease 2019 (COVID-19) has caused unrest for all levels of society. The virus, whose symptoms are similar to SARS, not only affects a person's physical condition, but also affects psychological, social, and economic conditions. Among the general population, people infected with this virus or COVID-19 patients are more likely to experience changes in psychological, social, and economic conditions. This study aims to describe the impact of COVID-19 on psychological, social, and economic changes in patients in Dendang village Langkat regency, North Sumatera. The method used in this research is descriptive qualitative with interview techniques to patients who have undergone treatment and recovered. The results showed that there were changes in the psychological, social, and economic aspects of COVID-19 patients. Psychologically, patients experience changes ranging from fear, sadness, depression, decreased motivation to trauma. While the social impact, patients get different treatment and views from society. Then, economically, patients experience a decrease in income so that it is difficult to meet their food needs.

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.

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.

The Impact of Endorsing the Belief in a Just World on Social Judgments

2013 ◽  
Vol 44 (3) ◽  
pp. 209-218 ◽  
Author(s):  
Benoît Testé ◽  
Samantha Perrin
Keyword(s):  
Social Desirability ◽  
Social Value ◽  
Social Utility ◽  
Western Society ◽  
Social Judgments ◽  
Just World ◽  
The Social ◽  
Main Effect ◽  
The Impact

The present research examines the social value attributed to endorsing the belief in a just world for self (BJW-S) and for others (BJW-O) in a Western society. We conducted four studies in which we asked participants to assess a target who endorsed BJW-S vs. BJW-O either strongly or weakly. Results showed that endorsement of BJW-S was socially valued and had a greater effect on social utility judgments than it did on social desirability judgments. In contrast, the main effect of endorsement of BJW-O was to reduce the target’s social desirability. The results also showed that the effect of BJW-S on social utility is mediated by the target’s perceived individualism, whereas the effect of BJW-S and BJW-O on social desirability is mediated by the target’s perceived collectivism.

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