Caregiver Burden Scale Research Articles

Assessing burden among caregivers of pediatric dialysis and kidney transplant patients.

Caregiver burden in pediatric kidney disease is under-recognized and unquantified. The Pediatric Renal Caregiver Burden Scale (PR-CBS) is a validated tool that evaluates caregiver burden in this population. This study assesses caregiver burden at a tertiary center pediatric hospital in the following groups: dialysis, early post-kidney transplant (KT) (30 to 364days), and late post-KT (> 1year). Additionally, we aimed to demonstrate the feasibility of a translated PR-CBS among Spanish-speaking caregivers. In this cross-sectional study, caregivers were approached at clinic visits to complete the PR-CBS. Total PR-CBS scores (ranging 51 to 255) and mean domain scores (ranging 1 to 5) were calculated. Descriptive statistics and t-tests were performed. Of the 30 caregivers approached, 26 consented: five of children receiving dialysis and 21 post-transplant. Survey completion was 100%. Total burden score was higher for caregivers of children on dialysis than post-KT, but not significantly (160 vs. 117, p = 0.09). The mean score for every domain was higher for caregivers of children on dialysis with significant differences in family life and caregiver identity (respectively, p = 0.04 and p = 0.03). PR-CBS scores did not differ across demographics. Four surveys were completed in Spanish; no significant difference was found. Caregivers of children with kidney failure experience significant burden. While a small sample size limited this study, there was a trend for higher burden scores among caregivers of children on dialysis compared to post-KT. A larger, adequately powered study is needed to further assess the degree of burden in this population.

Ambivalent ageism and the pains and gains of informal caregiving for older adults: Findings from Germany

Background and ObjectivesWe analyzed the associations between ambivalent ageism, burden and positive experiences of care among informal caregivers of older adults (aged ≥60 years), to advance understanding of its role as psychosocial risk or resilience factor for informal caregivers. Design and MethodsData of 433 informal caregivers (≥18 years) of adults with care needs (≥60 years) from the Attitudes towards Informal Caregivers (ATTIC) project was used. The Ambivalent Ageism Scale, Positive Aspects of Care Scale and the Burden Scale for Family Caregivers were used. Linear regression analyses adjusted for context and personal factors were conducted, with age and gender included as moderators in additional tests. ResultsHigh ageism (total score) was significantly associated with a high level of positive aspects of care and burden. Further analyses showed a significant positive association between benevolent ageism and positive aspects of care, while stronger hostile ageism was associated with less positive aspects of care. Hostile ageism was also significantly associated with more burden, while benevolent ageism and burden were not associated. Additional analyses indicated no moderation by gender, but by age. The association between hostile ageism and burden was weaker with caregivers’ higher age. Discussion and ImplicationsWhile hostile ageism and worse caregiver burden were associated, positive care experiences seemed to benefit from benevolent ageism. This highlights the complex associations between ageism and caregivers’ well-being, which need to be taken into account in theory and practice focused on improving the care situation for both caregivers and care recipients.

The Effect of Life Activity Levels of Palliative Care Patients on the Caregivers' Perception of Caregivers Burden.

Objective(s): Studies show the effects of dependent patients' caregivers on the caregiving burden. Knowing the effects of maintenance of movement, especially in life activities, on the factors affecting the caregiving burden is important for the quality of care, ensuring that the caregiver's capacity is preserved. Methods: This descriptive and cross-sectional study research was carried out to determine the effect of life activity levels of palliative care patients on the care burden of caregivers. The number of individuals to be sampled was calculated according to the sample formula with a known population. The sample of the consisted of 108 patients and their caregivers in a district state hospital between June and December 2022. Data were collected using the Barthel Index of Patient Activities of Daily Living (ADL) and Caregiver Burden Scale. Descriptive statistical methods, quantitative data analyses, and correlation analyses were used in the analysis of the data. Results: The average age for patient was 78.13 ± 10.25 and for caregivers was 54.64 ± 13.22 years. Barthel ADL Index score of the patients was 35.05, and 38% of the patients were completely dependent. Caregiver Burden Scale scores was 50.80, and 76.8% of the caregivers had moderate caregiver burden. Patients with increasing age, with diabetes mellitus and dementia diagnosis, not using glasses, or having urinary catheters and gastrostomy tubes had lower activity levels. The caregiver burden of caregivers was higher in those who spent 3 to 4 h for daily patient care, who had sleep problems, who thought that their health deteriorated compared to those who did not. It was determined that as the patients' ability to perform their daily activities decreased, the caregiver burden increased (r = -0.417; P < .01). Conclusions: It might be recommended that nurses can implement the nursing interventions completely and severely dependent patients' caregivers psychological and social support.

Burden of caregivers of older people in Sri Lanka: an overlooked concern in the health care system

BackgroundCaring for older people has become a significant public health concern in Sri Lanka due to the growing aging population. This has placed a heavy burden on family caregivers, particularly those caring for older individuals with multiple chronic conditions. Recognizing this challenge, the present study aimed to evaluate the psychometric properties of the Sinhala version of the 10-item short form of the Burden Scale for Family Caregivers (BSFC-s) and assess caregiver burden and associated factors among caregivers of older people aged over 65 years with multimorbidity.MethodsThe BSFC-s was cross-culturally adapted following standard guidelines and administered to consecutively selected 178 family caregivers involved in the long-term care of older patients (aged ≥ 65 years) who were regular attendees of medical and neurology clinics at the National Hospital Galle, Sri Lanka. The validated Sinhala version of the Short Form-36 questionnaire (SF-36) was also administered simultaneously. After two weeks, 60 caregivers were re-assessed using the BSFC-s. The psychometric properties, including reliability and validity, as well as floor and ceiling effects, were evaluated. The final version of the BSFC-s was then administered to 270 informal family caregivers in the Gampaha District, Sri Lanka.ResultsThe study revealed that the internal consistency of the Sinhala version of the BSFC-s, measured by Cronbach’s alpha, was 0.90, with item-total correlations ranging from 0.38 to 0.82. The test-retest reliability, assessed using the intra-class correlation coefficient, was 0.99 (95% CI: 0.99-1.00; p < 0.001). Principal component analysis revealed two factors explaining 65.8% of the cumulative variance. BSFC-s scores showed a strong negative correlation with SF-36 scores (r = -0.81, p < 0.001), indicating a good concurrent validity. Neither floor nor ceiling effects were observed. Among the 270 family caregivers, 78.1% reported a high level of burden, while 21.1% reported moderate burden. Caregiver burden was significantly associated with low educational level (p = 0.032), low monthly income (p = 0.041), and unemployment status (p < 0.001) of the caregiver.ConclusionThe Sinhala version of the BSFC-s demonstrated strong reliability and validity, making it a suitable tool for assessing caregiver burden in Sri Lanka. Most caregivers reported high levels of subjective burden, particularly those with lower socio-demographic status.Trial registrationNot applicable.

Real-world impact of intrathecal baclofen therapy: the benefits of neteka on patient outcomes, caregiver burden, and cost efficiency.

Intrathecal baclofen therapy (ITB) is a well-established treatment modality for severe spasticity, but it is burdened by the need for periodic pump refills. The introduction of a new formulation of baclofen with an extended stability of 180 days (Neteka, Nordic Group BV) could decrease the frequency of refills. We aimed at analyzing the clinical and economic impact of Neteka introduction in our outpatient facility. Forty-eight patients with an implanted device for intrathecal baclofen infusion, who shifted from standard baclofen to Neteka, were included in the present study. We collected clinical and refilling data both from pre-Neteka and Neteka timeframes. In patients treated with baclofen 2mg/ml (45/48, 93.8%), the introduction of Neteka led to a significant decrease of median number of refills per year (2.7 vs. 4 in pre-Neteka timeframe, p < 0.0001). This resulted in an improved quality of life, as shown by the reduction of Oberst Caregiving Burden Scale score both for time and difficulty of caregiving (p < 0.0001 and p = 0.0003, respectively). Furthermore, a median saving of 302.40 euro per year per patient, as compared to pre-Neteka timeframe, was registered. Similar results were obtained in the smaller cohort treated with baclofen 0.5mg/ml (3/48, 6.3%). Neteka appreciation rate was high. As expected, no changes in clinical effectiveness of ITB therapy were observed by comparing pre-Neteka and Neteka timeframes. The extended half-life provided by Neteka, by reducing the number of refills, could improve patient quality of life, enhance caregiver satisfaction, and decrease the financial burden on healthcare system.

Caregiver Tasks and Life Changes Among Family Caregivers of Stroke Survivors.

Stroke family caregivers often struggle to provide care. The purpose of the current study was to determine: (a) ease or difficulty with caregiving tasks; (b) life changes because of providing care; and (c) relationship between caregiving tasks and life changes. A descriptive correlational design was used. Telephone interviews were conducted with 74 stroke caregivers. Tasks were measured using the Oberst Caregiving Burden Scale; life changes with the Bakas Caregiving Outcomes Scale. The most difficult tasks were managing survivor behaviors and the most negative life changes were lack of time for social activities. The easiest tasks were medical or nursing treatments, whereas the most positive life change was an improved relationship with the survivor. Tasks and life changes were different for each caregiver. Caregiver tasks and life changes were moderately correlated (r = 0.33, p < 0.01). Caregiver tasks and life changes are important for designing strategies to support stroke caregivers. [Journal of Gerontological Nursing, xx(x), xx-xx.].

Assessing caregiver burden: the role of assistive devices and identification of assistive device needs

Purpose There is insufficient information on whether the use of assistive devices is associated with a lower burden on caregivers of individuals with disabilities. This study was conducted (1) to examine how care recipient-level factors, caregiver-level factors, and the use of assistive devices were associated with caregiver burden, and (2) to investigate the assistive device needs of caregivers. Materials and Methods This cross-sectional descriptive study used surveys. The participants were caregivers of people with disabilities living in Korea (n = 499). The independent variables were care recipient-level factors, caregiver-level factors, and utilization of assistive devices. The outcome variable, caregiver burden, was measured using the Korean Caregiver Burden Scale. For the data analysis, multivariate logistic regression models were built on the caregiver burden using variables that showed statistical significance in the univariate analysis. Results Model 1 included care recipient-level factors. Model 2 included caregiver-level factors in addition to care-recipient factors to examine caregiver factors associated with burden. Model 3 included the utilization of care devices, in addition to the variables used in Model 2, to investigate whether the use of care devices was associated with a lower burden. Caregivers who were married, were informal caregivers, or experienced greater psychological stress had an increased probability of experiencing caregiver burden. Moreover, not using assistive devices increases the odds of experiencing caregiver burden. The most desirable properties of devices are transfer, mobility, and bathing. Conclusion As the use of assistive devices is associated with caregiver burden, such care devices should be developed and provided to caregivers based on their individual needs.

Impact of functional re-education and environmental adaptation in cancer patients with respiratory pathology: Study protocol.

In recent years, cancer survival rates have increased exponentially. However, this rise in survival comes with a significant drawback. As the number of treatment lines has grown, so too have the side effects, which can severely impact patients' functionality and quality of life. One of the most concerning effects is dyspnoea, a serious health issue that imposes substantial limitations on individuals. While traditional clinical approaches, primarily focused on pharmacological interventions, are commonly employed to manage dyspnoea, we argue that these methods may not always provide optimal symptomatic relief. Therefore, we propose a study protocol to implement an interdisciplinary intervention for these patients. This protocol aims to enhance standard clinical practice by introducing a program of functional re-education and environmental adaptation. We believe this intervention is essential for the follow-up care of patients with respiratory conditions after hospital discharge. A two-arm, randomized, parallel, controlled clinical trial will be conducted by the University of Salamanca, Spain, in collaboration with the Medical Oncology Service of the University Health Care Complex of Salamanca. The trial aims to recruit 80 oncology patients who exhibit symptoms of dyspnoea during hospital admission. Participants will be randomly assigned to one of two groups: the control group, which will receive a health education program, and the experimental group, which will receive both the health education program and a functional re-education and environmental adaptation program. Assessments will be conducted at three time points: baseline (prior to hospital discharge), follow-up (15 days after discharge), and the end of the intervention (1 month after discharge). During these assessments, sociodemographic data will be collected, and the following scales will be administered: Barthel Index, Medical Research Council Dyspnoea Scale (mMRC), EuroQol 5-D questionnaire (EQ-5D), Visual Analogue Scale (VAS), Short Physical Performance Battery (SPPB), Tampa Scale for Kinesiophobia (TSK), and the Zarit Reduced Caregiver Burden Scale. The findings of this research can be easily implemented in clinical settings by introducing a targeted intervention to improve the quality of life for this patient population. This study aims to advance traditional clinical approaches by facilitating the recovery or adaptation of cancer patients in their daily routines, in relation to the severity of their symptoms. Our primary goal is to enhance independence and functionality, ultimately improving their overall standard of living. ClinicalTrials.gov; ID: NCT06035263. Registered on: September 19, 2023. https://register.clinicaltrials.gov/prs/app/action/SelectProtocol?sid=S000DM2U&selectaction=Edit&uid=U0004OJ7&ts=6&cx=f7qqxo.

Challenges faced by the caregivers of the elderly: a cross-sectional survey from India.

Older people often require support due to age-related health issues, thereby increasing their dependency on caregivers. The caregivers often experience burdens of varying nature. To assess the dependency level of the elderly and the challenges faced by their caregivers. A total of 1265 elderly and 1000 caregivers were enrolled consecutively from an urban locality. After obtaining informed consent, the elderly were interviewed using the Lawton Independent Activities of Daily Living Scale to assess their dependency levels while the caregivers were interviewed using the Zarit Caregiver Burden Scale to assess their burden related to caregiving. The study was approved by the Ethics Committee of the Institute. About half (52.7%) of the elderly were aged between 60 and 70 years old and were female (54%). Sixty percent of the elderly were affected by a single illness. Among caregivers, 46% were aged between 31 and 40 years, 60% were female, and 44% were unemployed. The mean per capita family income was Rs 12 202.06 ± 7025.16 per month. It was found that about half (51.4%) of the elderly were independent, 48.1% were partially dependent and 0.5% were fully dependent. Zarit Caregiver Burden Scale revealed that 58.6% of caregivers experienced no to mild burden, 39.4% had mild to moderate burden, 2.0% had moderate to severe burden while none of them experienced severe burden. Significant association was found between the elderly's dependency level and their age, gender, education, occupation, and number of illnesses. It was also observed that an increase in the independence status of the elders reduces the caregiver's burden (r = -0.454, P < 0.01). The caregiver burden increases with the dependency level of the elderly, highlighting the need for adequate support for caregivers.

Investigation of caregiver burden, quality of life, and occupational performance of primary caregivers of individuals having experienced a stroke with and without aphasia

ABSTRACT Background Individuals having experienced a stroke need the help of an individual to perform their activities of daily living. Therefore, the disease affects not only patients but also their caregivers. Objectives This study aimed to investigate how aphasia affects caregivers’ burden of care, quality of life, and occupational performance. Methods This cross-sectional study involved Group 1, (n=51) the caregivers of individuals having experienced a stroke with aphasia, and Group 2 (n = 51), the caregivers of individuals having experienced a stroke without aphasia. The caregivers were evaluated using the sociodemographic information form, the Zarit Caregiver Burden Scale, the SF-36 Short Form, and Canadian Occupational Performance Measure tests. Results Our study found that the caregiver burden in Group 1 was higher than in Group 2 (t = 3.8, p = 0.01). Caregivers in Group 1 also had higher pain levels (t = –2.21, p = 0.029) and lower social functions than those in Group 2 (t = –2.54, p = 0.013). There was no statistically significant difference between the other sub-parameters of quality of life (p > 0.05). It was observed that the occupational performance (t = –3.31, p = 0.001) and satisfaction levels (t = –3.57, p = 0.001) of the caregivers in Group 1 were lower than those of the caregivers in Group 2. Conclusions Occupational therapy evaluation and intervention programs for caregivers should consider the occupational performance of caregivers of individuals with aphasia and include approaches to problem areas.

Instruments for Measuring the Burden of Family Caregivers of Cancer Patients: A Systematic Review of Measurement Properties.

This study identifies instruments for assessing the burden on family caregivers of cancer patients and evaluates their psychometric properties using COSMIN criteria. A systematic review based on COSMIN methodology. The review adhered to PRISMA guidelines. Relevant studies were identified through searches in PubMed, Web of Science, Cochrane Library, Embase, China National Knowledge Infrastructure, Wanfang Database, and China Science and Technology Journal Database, covering literature from inception to September 2024. Included studies focused on developing or validating measurement tools and assessing psychometric properties such as reliability, internal consistency and construct validity. Two independent researchers screened the literature, extracted data and evaluated psychometric properties using COSMIN criteria while assessing evidence quality via the GRADE method. A total of 32 studies were included, encompassing 17 tools for assessing caregiver burden. None reported measurement error, cross-cultural validity or responsiveness. The Caregiver's Burden Scale in End-of-Life Care (CBS-EOLC) demonstrated strong reliability, validity and internal consistency, receiving a strong recommendation for clinical practice. In contrast, the Zarit Burden Interview (ZBI), Family Caregiver Burden Interview Scale (FBIS) and Bakas Caregiving Outcomes Scale (BCOS) are not recommended due to insufficient supporting evidence. Other tools showed weak evidence, leading to weak recommendations. The CBS-EOLC exhibits comprehensive psychometric properties suitable for clinical applications. The ZBI, FBIS and BCOS lack adequate supporting evidence and are not recommended. Future research should focus on measurement error, cross-cultural validity and responsiveness to enhance these tools' applicability and reliability. This review provides evidence for healthcare providers to select instruments for assessing caregiver burden in cancer patients. This systematic review highlights the need for comprehensive assessments of caregiver burden based on COSMIN guidelines. This study is a systematic review with no patient or public participation.

Development of a New Questionnaire to Assess the Social Impact of Non-communicable Diseases

Abstract Background: Non-communicable diseases (NCDs) have a considerable impact on an individual’s social life. Life-long medication, fear of death, dietary restrictions, hospital admissions, dependency on caregivers, and strained interpersonal relationships play a role. The available questionnaires measure only individual aspects of social impact. The aim of the study was to develop and validate a comprehensive questionnaire to assess the social impact of NCDs. Material and Methods: A cross-sectional study was conducted among patients and caregivers seeking care at a tertiary care hospital for diabetes, hypertension, chronic obstructive pulmonary disease (COPD), stroke, coronary artery disease (CAD), and cancer. Thirty patients each with the above diseases were administered Cousineau Self-Perceived Burden Scale to assess perceived burden among patients, Caregiver Burden Scale to assess caregiver burden, EuroQol-5D-3L to assess the quality of life, and face validated questions of sociodemographic details, cost of healthcare, and stress due to disease. Rasch analysis was performed to identify items that lie within the traditional bounds of mean-square item fit. The Delphi method with 10 subject experts was used to identify the questions that would be included in the final tool. Results: The data consists of 150 observations, with 77 categorical questions subdivided into various domains. From this, a total of 30 questions were extracted by Rasch analysis. The new questionnaire had good internal consistency (Cronbach’s alpha: 0.969, 95% confidence interval: 0.96–0.98). The questionnaire was finalized after reaching a consensus among subject experts. Conclusion: The social impact questionnaire developed consisted of 30 questions, has good internal consistency, and can be used to measure the social impact of NCDs.

Quality of life and mental health status in caregivers of pediatric patients with nephropathic cystinosis.

There are few studies assessing psychological burden and quality of life (QoL) in caregivers of pediatric patients with nephropathic cystinosis, a severe chronic disease. This observational, single-center study aimed to explore the levels of anxiety, depression, care burden, and QoL status in caregivers of patients with nephropathic cystinosis. The Hospital Anxiety and Depression Scale (HADS), the Zarit Caregiver Burden Scale, and the Short Form-36 (SF-36) were administered to caregivers of pediatric patients with nephropathic cystinosis. Nine caregivers of pediatric patients with nephropathic cystinosis participated in the study (6 boys and 3 girls; mean age, 12.6 ± 4.2 years). All participating caregivers were the patient's mothers. Of the 9 caregivers, 6 showed anxiety/depression and 4 severe care burden. Overall, SF-36 QoL domains with a worse perception by caregivers were 'general health' and 'health change over time'. Mothers without depression/anxiety and low care burden had better QoL perception (p = 0.02). All caregivers with high care burden showed anxiety/depression. In our study cohort, caregivers of pediatric patients with nephropathic cystinosis showed high levels of anxiety/depression, high care burden, and impaired QoL, highlighting the importance of detecting psycho-social issues to implement strategies that relieve family stress and improve coping strategies.

The Role of Perceived Social Support on Stress, Anxiety, Depression and Care Burden Levels of Caregivers of Cancer Patients: A Turkish Republic of Northern Cyprus (TRNC) Example.

The current study investigated the role of perceived social support in the relationship between stress, depression, anxiety, and caregiving burden on caregivers of cancer patients. The research was conducted in the Turkish Republic of Northern Cyprus. In this sense, the situation in a region that is not often subject to research is reflected in the literature. In the current study, data from 93 caregivers were examined. 61.6% of the participants are women and the mean age of the participants is 40.82. Sociodemographic Information Form, Zarit Caregiver Burden Scale, Multidimensional Scale of Perceived Social Support, Depression Anxiety Stress Scale were used as measurement tools. Caregivers' depression and anxiety levels were found to be normal, and their stress levels were found to be mild. Caregiving burden, depression, anxiety, stress, and perceived social support were found to be interrelated variables. Six models of the role of perceived social support were tested. The analysis results showed that perceived social support had a mediating role, but not a moderating role, in the relationships between stress and caregiving burden, depression and anxiety. This finding, which is not frequently encountered in the related literature, was discussed with the related literature and suggestions for future studies were presented in the light of the findings.

Caregiver burden, attachment and cognitive emotion among the family caregivers of severe mental illness patients

BackgroundSerious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs.MethodsThis cross-sectional descriptive-correlational study was carried out in May–November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients’ demographic and clinical characteristics questionnaire, an FCs’ demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0).ResultsCB had significant inverse relationship with secure AS (r = − 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P < 0.01). Moreover, CB had significant inverse relationship with adaptive CER strategies and significant positive relationship with maladaptive CER strategies (P < 0.001). Regression analysis also showed that CB had significant relationship with secure AS and catastrophizing, rumination, self-blame, and positive refocusing CER strategies (P < 0.05).ConclusionThis study concludes that AS and CER can impact CB. There is a negative relationship between secure AS and CB, as well as between adaptive CER strategies and CB. Conversely, there is a positive relationship between avoidant AS and increased CB, as well as between maladaptive CER strategies and CB. It is recommended to adopt strategies that promote the use of secure AS and adaptive CER among the FCs of patients with SMI.

The Effect of Forgiveness Psychoeducation on Death Anxiety, Caregiver Burden, and Forgiveness Tendencies in Caregivers of Patients at the End of Life: A Randomized Controlled Trial.

Providing caregivers with the skills and awareness of forgiveness is crucial to help them express their emotions, navigate the grieving process more smoothly, enhance their interaction with the patient, and make the time until the patient's death more meaningful. To examine the effect of forgiveness psychoeducation on death anxiety, caregiver burden, and forgiveness tendencies in caregivers of patients at the end of life. A randomized controlled experimental method was used, including a pretest, posttest, 1-month follow-up, and 3-month follow-up. The research sample included 56 caregivers of patients (experimental group = 28, control group = 28) at the end of life. During the study, forgiveness psychoeducation was administered to the experimental group, whereas no intervention was carried out in the control group. Data were collected using the Personal Information Form, Thorson-Powell Death Anxiety Scale, Caregiver Burden Scale, and Heartland Forgiveness Scale. The average scores of death anxiety and caregiving burden in the posttest and follow-up measurements of caregivers in the experimental group were statistically significantly lower than those of caregivers in the control group (P < .05). Forgiveness psychoeducation reduces death anxiety and caregiving burdens in caregivers of patients at the end of life. It is recommended to provide psychoeducation on forgiveness. The psychoeducation conducted by Consultation Liaison Psychiatry Nurses aimed at increasing the internal process of forgiveness can positively influence the communication, emotions, and spiritual development of caregivers of patients at the end of life. Thus, improving the quality of care can be achieved through forgiveness.

The effect of using virtual reality goggles on psychological well-being and care burden of informal caregivers of patients hospitalized in a palliative care clinic

PurposeThis study was conducted to determine the effect of virtual reality goggles on the psychological well-being and care burden of informal caregivers of patients hospitalized in a palliative care clinic. MethodsPretest-posttest randomized controlled study. It was conducted from June-October 2023 with 44 informal caregivers (22 in the control, 22 in the intervention group). Caregivers in the intervention group were shown 360° relaxing virtual reality videos with virtual reality goggles for four weeks, three days a week, 30 min per use. The control group did not receive any intervention. Data were collected using the caregiver introduction form, psychological well-being scale, caregiving burden scale, and satisfaction form for virtual reality goggles. Analyses were performed with Independent Sample T-Test and Paired Sample T-Test. ResultsThe post-test mean score of the psychological well-being scale of the intervention group was statistically significantly higher than the control group (p < 0.05). The post-test mean score of the caregiving burden scale of the control group was statistically significantly higher than the intervention group (p < 0.05). 68% of the caregivers in the intervention group were very satisfied with using virtual reality goggles. This study revealed that using virtual reality goggles increased psychological well-being and reduced the care burden of informal caregivers of patients hospitalized in a palliative care clinic. ConclusionThe results of this study have revealed that virtual reality glasses can be used to support informal caregivers in palliative care. This study reveals promising results for improving the quality of patient care by supporting informal caregivers. ClinicalTrials.gov IDNCT06156540

The effect of the COVID-19 pandemic on the caregiving burden of individuals caring for patients with chronic neurological diseases.

Caring for neurological patients poses a serious burden on caregivers, even in normal times. It is likely that this burden has become even more painful post-COVID-19 pandemic. This study evaluates the effect of the COVID-19 pandemic on the care burden of those who care for patients with chronic neurological diseases. The study included 50 patients and 50 caregivers. All the tests were conducted twice, it was answered firstly, according to the pre-COVID-19 pandemic, and secondly, during the COVID-19 pandemic period. The depression levels of the patients and caregivers were assessed with the Beck Depression Scale, their sleep quality with the Pittsburgh Sleep Quality Index, their quality of life was assessed with the RAND 36-Item Health Survey, and caregivers' burden of care was evaluated with the Zarit Caregiver Burden Scale. It was observed at the end of the study that the depression levels of patients (p = 0.00), and caregivers (p = 0.00) increased post-COVID-19 pandemic, the sleep quality of caregivers (p = 0.00), and patients (p = 0.02) decreased post-COVID-19 pandemic. On the other hand, it was determined that caregivers' burden of care increased (p = 0.00). Sub-parameters of the RAND 36-Item Health Survey, physical functioning (p = 0.02), role limitations due to physical health (p = 0.00), and role limitations due to emotional problems (p = 0.03) decreased for caregivers. In summary, we concluded that the well-being and psychological status of both patients and their caregivers were adversely affected by the COVID-19 pandemic.

The correlation between self-efficacy, care burden, and hopelessness of mothers with medical technology-dependent children

Background. Having a child dependent on medical technology devices might cause some challenges for parents. Identifying these challenges and producing solutions may significantly contribute to the home care provider. This study aims to examine the correlation between self-efficacy, care burden, and hopelessness of mothers with medical technology-dependent children. Material and methods. This study was conducted using a cross-sectional and correlational design. Between April and July 2023, 164 mothers had at least one child receiving home care and were dependent on a medical technological device. The data were collected using an information form, the general self-efficacy scale, the Burden Scale for Family Caregivers, and the Beck Hopelessness Inventory. Results. It was found that the self-efficacy of mothers with a child dependent on a medical technological device was on the mean, their care burden was above the mean, and their hopelessness was below the mean. As the mothers' self-efficacy increased, their hopelessness and care burden decreased. It was found that the mothers’ self-efficacy significantly predicted their care burden and hopelessness. Conclusions. In the hospital setting, it is necessary to initiate training, counselling, and psychosocial support for the caregivers and the entire family. Pediatric intensive care nurses play a significant role in achieving this.

Determining the Care Burden and Burnout Levels of Family Members Providing Care for Cancer Patients

Objectives: Caregivers’ care burden and burnout levels are projected to increase as the physical independence of their patients decreases. This study aimed to determine the care burden and burnout perception of caregivers of cancer patients. Methods: The study was conducted with 143 patient relatives who were providing primary care for patients treated between March 1 and June 1, 2017, in the clinics of the Institute of Oncology of Istanbul University. The data were collected using the “ Personal information form “, “Zarit Caregiver Burden Scale” and “Maslach Burnout Inventory”. Data were analyzed using the SPSS statistical program. Descriptive statistics (frequency, percentage, mean, minimum, maximum, standard deviation) student t-test, one-way ANOVA, and Pearson correlation coefficient were used for data analysis. Results: The mean score from the burden interview was found 27.38±17.04. In the burnout inventory results, the mean of emotional exhaustion is 19.61±9.08, the mean of depersonalization is 8.78±5.38, and the mean of decrease in personal accomplishment is 29.66±5.91. Individuals’ perceptions of emotional exhaustion and depersonalization increase as their perception of care burden increases (p&amp;lt;.001). There was, however, no relationship between care burden and personal accomplishment (p&amp;gt;.05). The study demonstrated that caregivers’ care burden and burnout perceptions increased as cancer patients’ self-care ability worsened (p=.001). Conclusion: It has been found that the perceived care burden level is low and burnout level is middle among the caregivers of cancer patients. The patients’ level of dependency increases perceptions of caregiver burden and burnout increases too.