Family Caregiver Burden Research Articles

Burden and Anxiety in Family Caregivers in the Hospital That Debut in Caregiving.

This cross-sectional study aims to determine the level of subjective burden and anxiety of caregivers of dependent older relatives that start providing care in the hospital and to analyse the relationship between objective burden, subjective burden and anxiety in these caregivers. Seventy-two caregivers of dependent older relatives were recruited in a medium–long stay hospital. Sociodemographic variables, number of basic activities of daily living (ADLs) attended, hours of surveillance, burden, and anxiety were collected from caregivers. A trajectory analysis was used to analyse the relationship between variables. Of the caregivers, 36.1% had subjective burden and 14.9% had anxiety. Subjective burden was positively associated with the number of basic ADLs attended, the hours of surveillance, and the cognitive impairment of the care recipient. Anxiety was also positively associated with subjective burden. Subjective burden mediated the effects of the number of basic ADLs attended, hours of surveillance and the cognitive impairment of the care recipient on anxiety. The levels of subjective burden and anxiety in caregivers debuting in hospital care are elevated, showing the need for these caregivers to be cared for. Subjective burden is a possible risk factor for anxiety, independent of the objective burden; it may buffer the effects of objective burden on anxiety.

Quality of Life in Patients With Breast Cancer: The Influence of Family Caregiver's Burden and the Mediation of Patient's Anxiety and Depression.

Previous research showed that family caregiver's perception of burden can influence patient's report on their quality of life (QoL). The present study investigated the relationship between the two variables by considering the role of patient's anxiety and depression. A total of 382 dyads of Chinese breast cancer patients and their family caregivers participated in this study. The results showed that the mediation model fitted the data well (χ = 49.859; df = 16; χ/df = 3.116; RMSEA = 0.05; TLI = 0.928; CFI = 0.959). It indicated that family caregiver's burden influenced patient's QoL negatively, and this relationship was partially mediated by patient's anxiety and depression.

Family caregivers' burden and its influencing factors in elderly patients with hip fracture and cognitive impairment

Objective To investigate the burden level and influencing factors among the family caregivers of elderly hip fracture patients with cognitive impairment, and to provide a theoretical basis for the intervention study on reducing the burden of family caregivers. Methods This study was a cross-sectional survey. A total of 130 elderly hip fracture patients with cognitive impairment who were admitted to a ClassⅢ Grade A hospital in Shanghai from January to November 2018 as well as their family caregivers (n=130) were selected by convenient sampling. Patient and Caregiver General Information Questionnaire, Montreal Cognitive Assessment Scale (MoCA) , Barthel Index Assessment Scale (BI) , Caregiver Burden Inventory (CBI) , Neuropsychiatric Inventory-Questionnaire (NPI-Q) , Simple Coping Style Questionnaire (SCSQ) , Social Support Rating Scale (SSRS) were used in the investigation. Single factor analysis and multiple stepwise regression analysis were used to analyze the influencing factors of caregiver burden. A total of 130 questionnaires were sent out and 121 valid questionnaires were collected, yielding an effective recovery rate of 93.08%. Results The CBI score of family caregivers of elderly hip fracture patients with cognitive impairment was (38.58±16.46) , and the overall level of caregivers was medium. Univariate analysis showed that there were statistically significant differences in the burden level among caregivers of patients in terms of the following 7 factors: different level of cognitive impairment, self-care ability, caregiver's past history, whether living with patients, whether multiple caregivers or not, daily care time and total care time (P<0.05) . Multivariate stepwise regression analysis showed that self-care ability and cognitive impairment, caregiver's NPI-Q pain degree, negative coping style and daily care time were the main influencing factors of family caregiver burden in elderly hip fracture patients with cognitive impairment (R2=0.564, F=29.726, P<0.01) . Conclusions Care burden exists in family caregivers of elderly hip fracture patients with cognitive impairment. Medical workers should provide individual professional support and humanistic care to the caregivers according to the specific conditions of the patients' families, so as to improve the overall burden level of family caregivers. At the same time, it calls on the government, medical institutions and other relevant support policies to improve the care ability of caregivers, shorten their daily care time, reduce their burden, and promote their physical and mental health. Key words: Aged; Hip fracture; Cognition disorders; Caregivers; Burden; Infuencing factors

The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study.

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.

The Effects of Care Burden of Family Caregivers of Terminal Cancer Patients on Their Anxiety and Depression: Focusing on the Mediating Effects of Bonding Social Capital and Bridging Social Capital

The Effects of Care Burden of Family Caregivers of Terminal Cancer Patients on Their Anxiety and Depression: Focusing on the Mediating Effects of Bonding Social Capital and Bridging Social Capital

The effect of family-centered empowerment program on the family caregiver burden and the activities of daily living of Iranian patients with stroke: a randomized controlled trial study.

Dependence of stroke survivors regarding the ability to perform activities of daily living imposes a burden on family caregivers. The study evaluated the effect of the family-centered empowerment program on the ability of Iranian patients with stroke to perform activities of daily living, as well as on family caregiver burden. In this randomized controlled trial study, a total of 90 pairs of patients with stroke and their family caregivers was selected and randomly assigned to the intervention or control groups. Patients and their family caregivers participated in four family-centered empowerment program sessions over four consecutive days while the patient was hospitalized. The difference in the ability of patients with stroke in the intervention and control groups to perform activities of daily living was not significant 2weeks after the intervention. However, the ability of patients with stroke in the intervention group to perform activities of daily living increased significantly 2months after the intervention compared with the control group: 66 ± 35.95 and 51.31 ± 36.28, respectively (p = 0.047). Two weeks after the intervention, the family caregiver burden significantly decreased in the intervention group (29.55 ± 15.38) compared with the control group (38.77 ± 18.53 and p = 0.012). The burden in the intervention group also decreased 2months after the intervention compared with the control group: 22.95 ± 15.68 and 36.11 ± 18.88, respectively (p < 0.001). Nurses can use the family-centered empowerment program to improve the quality of life of patients with stroke, and to reduce the burden of family caregivers.

중년기 취업모의 가족부양부담이 심리적 복지감에 미치는 영향 - 가족지지 자원의 조절효과를 중심으로 -

중년기 취업모의 가족부양부담이 심리적 복지감에 미치는 영향 - 가족지지 자원의 조절효과를 중심으로 -

THE RELATIONSHIP BETWEEN SOCIAL SUPPORT, SPIRITUALITY WITH STRESS TOWARDS THE BURDEN OF FAMILY CAREGIVERS OF CANCER PATIENTS: A LITERATURE REVIEW

Cancer is a non-communicable disease that causes the second-highest death in the world. The study aimed to examine the relationship between social supports, spirituality with stress towards the burden of family caregivers of cancer patients. We searched literature from various relevant sources such as Ebsco, Science Direct, PubMed, and BMC Medicine, which published from 2012 to 2018. The results showed that social support reduced the stress of family caregivers. Spirituality could be as the coping for the family caregivers in dealing with stress. The factors associated with the high burden of family caregivers of cancer patients included age, cognitive as well as the family caregivers characteristics’. Further studies need to conduct spiritual and social support intervention to examine the effect of the intervention on health outcomes.&#x0D; Keyword: social support, spirituality, stress, caregiving burden, family caregivers of cancer patients.&#x0D; .&#x0D;

Burden in Family Caregivers of Cancer Patients: The Association with Depression, Religiosity and Religious Coping

Introduction: Cancer caregiving is challenging and often associated with significant burden in family caregivers. Yet, the healthcare providers often overlook the needs of the caregivers. Local data on cancer caregiving is still lacking. In line with the increasing cancer cases worldwide, there is a need to examine factors influencing the caregiver burden, and to find ways to improve the quality of life of the caregivers.&#x0D; Objectives: The study aimed to determine the caregiver burden rate among the local family caregivers of cancer patients, and to examine the associations between the caregiver burden and their sociodemographic factors, clinical factors, levels of depression, religiosity, and religious coping patterns.&#x0D; Methods: 127 family caregivers of cancer patients in a government tertiary hospital in Sarawak, Malaysia were recruited cross-sectionally using non-random sampling method. The associations between the variables were examined through bivariate analyses (Chi-Square test), followed by multivariate analysis to determine the factor(s) that were significantly associated with the caregiver burden.&#x0D; Results: The caregiver burden rate among local cancer caregivers was 55.6%. Two factors remained significant after adjusted in multivariate analysis. Caregivers who were the offspring of cancer patients experienced significantly fewer burden than non-offspring caregivers (OR 0.41, CI 0.18 – 0.94, p = 0.035). Also, the caregiver depression was significantly associated with the caregiver burden (OR 4.26, CI 1.87 – 9.72, p = 0.001). There were no significant associations found between the religiosity and religious coping with the caregiver burden on multivariate level.&#x0D; Conclusion: Caregiver burden is common among family caregivers of cancer patients. Caregivers who are the children or grandchildren of cancer patients are less likely to experience caregiver burden, whereas caregivers who have probable depression are more likely to experience caregiver burden. Future studies should assess the effects of specific intervention strategies in helping these caregivers.

Abstract 442: Caregiver Burden, Stress, Depression, and Quality of Life in Family Caregivers of Patients with Heart Failure

Background: Heart failure (HF) is a chronic disease, which is considered an important strategy to support HF patients for lifetime self-management and monitoring of worsening signs and symptoms of patients at home. However, the necessity of management throughout the whole life demands a great deal of challenge and coping of HF patients as well as their family caregivers. Purpose: We aimed to explore the levels of caregiver burden, stress, depression, and quality of life (QOL) in family caregivers of patients with HF, and to identify the relationships among the variables. Methods: A descriptive and exploratory study design was used. After approval of institutional review board, 64 family caregivers of patients with HF were recruited from a cardiovascular outpatient clinic at a university-affiliated hospital in Korea, between September 2018 and January 2019. We assessed the caregiver burden using Montgomery’s scale, stress by heart rate variability measurement, depression using geriatric depression scale, and QOL using WHO-QOL scale. Results: Participants’ mean age was 52.0 years, and the average length of care was 7.5 years. Most of them were the patient’s wife or child (female), and half of them had their own health problems such as hypertension and back pain. The total mean score of caregiver burden, stress, depression, and QOL of family caregivers were 68.5 (out of 95), 39.8 (out of 100), 8.0 (out of 15), and 93.8 (out of 140), respectively. Their QOL showed negative correlations with caregiver burden and stress, and the levels of caregiver burden and stress increased with HF disease period. Conclusion: Healthcare providers should be aware of the importance of support for family caregivers of patients with HF. It is necessary to develop practical strategies to improve the QOL and to alleviate caregiver burden, stress and depression of family caregivers. And ultimately, it will enable them for positive participation in the comprehensive disease management with patients with HF.

The Effect of Peer-Based Education on the Psychological Burden of Family Caregivers of Patients with Schizophrenia Admitted to the Military Hospital

The Effect of Peer-Based Education on the Psychological Burden of Family Caregivers of Patients with Schizophrenia Admitted to the Military Hospital

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia.

Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.

Measuring the Burden on Family Caregivers of People With Cancer: Cross-cultural Translation and Psychometric Testing of the Caregiver Reaction Assessment-Indonesian Version.

The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver's burden in Indonesia. To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA-Indonesian version (CRA-ID) with family caregivers of patients with cancer. Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured. A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%. Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81. The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia. Nurses can use the CRA-ID to measure family caregivers' burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.

Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries’ experiences, particularly with regard to the scope and operationalisation of financial support.

Improving family caregiver and patient outcomes in lung cancer surgery: Study protocol for a randomized trial of the multimedia self-management (MSM) intervention

ObjectiveTo describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery. DesignThe study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms. SettingOne National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California. ParticipantsPatients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only. InterventionBased on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support. Main outcome measuresFCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions). AnalysisRepeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes.ClinicalTrials.gov Identifier: NCT03686007

Amyotrophic Lateral Sclerosis - Challenges of Family Caregivers

Patients who suffer from amyotrophic lateral sclerosis sometimes show pathological changes in behaviour and cognition. Some even develop frontotemporal dementia. The family caregivers of the patients are faced with additional challenges. To describe the effect of changes in behaviour and cognition on the emotional state and the perceived stress and burdens of family caregivers. Different search terms were used for searching in several databases. Ten trials were included in the study. Further examinations of this topic on the basis of additional literature are described in the discussion section. Changes in behaviour and cognition can lead to symptoms of anxiety and depression in family caregivers. The findings also show a correlation between apathy, disinhibition and executive dysfunction combined with an increase in caregiver burden. Changes in behaviour and cognition in patients with ALS have a negative impact on the emotional state of family caregivers and contribute to increased feelings of being burdened. Early and detailed information concerning possible disease-induced changes is necessary.

HUBUNGAN FAKTOR KELUARGA DENGAN KEKAMBUHAN PADA KLIEN SKIZOFRENIA DI POLIKLINIK RUMAH SAKIT JIWA PROF. DR. HB. SA’ANIN PADANG

The national prevalence of severe mental disorders in Indonesia is 1.7 per mile and 70% of them are schizophrenia. The inability to control symptoms can cause recurrence in schizophrenic clients. The purpose of this study was to determine the relationship of family factors with the relapse of schizophrenic clients at Prof. Dr. HB. Sa’anin Padang. This type of research was descriptive correlative with a cross sectional approach with the number of respondents 173 people schizophrenia clients and families at Prof. RS Polyclinic. HB. Sa’anin Padang. The sampling technique is convinience sampling. The study was conducted from April to June 2016. Data collection was carried out using a questionnaire. The results showed that there was a significant relationship between family support and caregiver burden with relapse of schizophrenic clients (p &lt;0,05). The results of this study are expected to be an input for nurses and related agencies to prevent the relapse of schizophrenia clients by providing an understanding of the importance of family support and forming a supportive group of schizophrenic client families.&#x0D; Keywords : Family, relapse, schizophrenia

Influence of Caring Burden and the Way of Coping on Burnout in Caregivers of Cancer Patients

Purpose: The aims of this study were to identify the effects of caring burden and the way of coping on burnout in caregivers of cancer patients. Methods: One-hundred and forty family caregivers of cancer patients who visited the cancer center at one tertiary hospital in metropolitan city B were included. The data collection was conducted from August 1st to October 1st, 2018, using a structured, self-reported questionnaire. The collected data were analyzed using descriptive statistics, t-test, one-way ANOVA, Pearson correlation coefficients, and multiple regression. Results: In the multiple regression analysis, the subject’s gender (β=.12, p=.028) and caring burden (β=.74, p<.001) had a significant effect on burnout. The explanatory power of the subject’s gender, education level, religion, caring time, number of family caregivers, monthly income, economic burden, expectation for treatment, caring burden, the way of aggressive coping, and the way of passive coping with burnout was 63.8% (F=23.28, p<.001). Conclusion: Reducing the caring burden in family caregivers of cancer patients will ultimately contribute to reducing burnout, thereby contributing to an improvement in the psychological well-being and quality of life of family members, as well as positively contributing to the recovery of patients.

Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention.

BackgroundFamilies living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum—from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings.ObjectiveThis study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR).MethodsA total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist.ResultsTele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C.ConclusionsWe found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR.

The impact of goal adjustment and caregiver burden on psychological distress among caregivers of cancer patients.

Research has demonstrated that serving in the caregiver role is often associated with increased symptoms of depression, stress, and anxiety, but some people fare better than others in managing the burden of caregiving. The goal of the present study was to examine the potential moderating role of goal adjustment (the ability to disengage from unattainable goals and reengage in alterative ones) on the relation between caregiver burden and distress in family caregivers of cancer patients. Caregivers of adult family members diagnosed with cancer in the past 3years participated (N=102). Participants were consented and completed online questionnaires on psychological distress, caregiver burden, and goal adjustment. The ability to disengage from unattainable goals was associated with lower anxiety and stress in the face of increasing caregiver burden. By contrast, the ability to reengage in alternative goals was associated with lower depression as burden increased. The present study suggests that goal adjustment may play an important moderating role in the relationship between caregiver burden and distress. Caregivers who are better able to disengage from unattainable goals may experience less stress and anxiety, and caregivers who are better able to reengage in alternative goals experience less depressed mood. This study provides preliminary evidence that learning different ways to approach and adjust goals may reduce depression, anxiety, and stress in family caregivers.