Caregiving burden in palliative care: exploratory mixed-method study.

perience high psychosocial burden, including anxiety, depressive symptoms, and reduced quality of life. Although family support is a core component of palliative care, psychosocial interventions specifically targeting informal caregivers remain limited. Aim: To systematically review the impact of psychosocial support interventions delivered to informal caregivers of adult palliative care patients on emotional outcomes, caregiver burden, and quality of life, and to synthesize caregivers’ perceptions and experiences of the support received. Method: A systematic review was conducted in accordance with PRISMA 2020. Searches were performed in ProQuest, PubMed, Web of Science, and PubMed Central for studies published in English or Spanish between 2014 and 2024. Quantitative, qualitative, and mixed-methods studies evaluating psychosocial interventions for informal caregivers or providing them with structured access to psychosocial support were included. Results: Ten studies met inclusion criteria. Multicomponent interventions—particularly those addressing the patient–caregiver dyad or integrating caregivers into patient-centered programs—showed favorable effects on depressive symptoms, anxiety, caregiver burden, and/or quality of life. Caregivers reported emotional validation, improved coping strategies, and a sense of support. Remote delivery formats (telephone, online platforms) were feasible and acceptable. Conclusions: Psychosocial interventions that actively involve informal caregivers are associated with meaningful benefits and positive subjective experiences. Future research should prioritize methodologically robust designs and explicitly address grief and bereavement when relevant.

This research note presents the findings of changes in the gender gap in informal care provision and caregiver burden during the Spring 2020 COVID‐19 lockdown in the Netherlands. Government measures in response to the pandemic strongly restricted informal caregivers in providing help and care to persons with health‐related needs. At the same time, formal care was scaled back and informal caregivers' urge to help their loved ones was likely higher than before the pandemic. Generally, women pick up a larger share of informal care and experience more caregiver burden. We assessed whether the COVID‐19 pandemic affected the gender gaps in informal caregiving by analyzing unique data on Dutch informal caregivers (N = 1672 caregiving situations in 1196 respondents). Results showed that women, compared to men, were more likely to have stopped and reduced caregiving, but also to have cared more during the pandemic. Moreover, based on longitudinally comparing levels during and before the lockdown, we found that the gender gap in caregiver burden narrowed down, especially because burden decreased for women. This means that the caregiver burden was more equally distributed among women and men during the Spring 2020 COVID‐19 lockdown than before.

Comparison of the effectiveness of trauma services provided by secondary and tertiary hospitals in Malaysia

Background: Irrational health anxiety increases due to insufficient information about COVID-19 and misinterpretation of allergy symptoms in favor of COVID-19. The disease increases the caregiver burden in informal caregivers and, subsequently, causes physical and mental disorders for them and negatively affects the provision of care for patients. Objectives: This study aimed to examine the relationship between health anxiety and caregiver burden in informal caregivers of patients with COVID-19. Methods: In this cross-sectional and correlational study, the convenient sampling method was adopted to select 340 informal caregivers of patients with COVID-19 who were discharged during the last three weeks of hospitalization in Vasei Hospital of Sabzevar City, Iran, in 2021. To collect the required data, the online links of the demographic information questionnaire, Salkoviskis's short health anxiety inventory (SHAI), and Novak and Guest's Caregiver Burden Inventory (CBI) were sent to the subjects through messengers. The data were analyzed using SPSS 22 as well as descriptive and analytical statistics. Results: According to the results, the mean caregiver burden score in informal caregivers of patients with COVID-19 was 69.72 ± 14.91, and the mean health anxiety score was 16.22 ± 8.24. Pearson's test results were indicative of a significant relationship between caregiver burden and health anxiety (P < 0.001). Conclusions: Since a significant relationship was found between health anxiety and caregiver burden in informal caregivers of patients with COVID-19 in this study, it was argued that the health of informal caregivers was an important health issue certainly deserving serious attention of the health service providers.

BackgroundCaregivers’ responsibilities for caring for individuals living with mental illness have grown in the last three decades, owing mostly to the transition of mental health treatment from institutions to community-based...

Caregiver burden and influencing factors among family caregivers of patients with glioma: A cross-sectional survey

Objective: To assess the prevalence of diabetic vascular complications and cardiovascular risk factors control in type 2 diabetic patients at tertiary settings. Methods: This cross-sectional study was conducted among 313 patients diagnosed with type 2 diabetes mellitus (T2DM) at two tertiary referral hospitals in Malaysia. Data regarding socio-demographics, macro- and microvascular complications, family health history, blood pressure, anthropometric indices, glycaemic control, and lipid profile were obtained from medical records, face-to-face interview and physical examination. Results: The mean age of patients was 55.7±9.2 years, mean diabetes duration was 10.1±8.1 years, and 52.1% were females. Approximately 36.1% patients had cardiovascular disease (CVD). There were high prevalence of established coronary artery disease (30.7%), cerebrovascular disease (10.2%), and peripheral vascular disease (5.1%). Peripheral neuropathy, diabetic nephropathy and retinopathy were present in 41.5%, 17.6% and 15.0% patients respectively. Only 14.1% of the patients reached optimal HbA1c level and 21.1% patients achieved target fasting plasma glucose. The overall prevalence of dyslipidemia was 89.1%, hypertension was 80.2%, and obesity was 35.9% (BMI) and 86.5% (waist-to-hip ratio). Conclusions: Diabetic vascular complications were highly prevalent among the type 2 diabetic patients. Cardiovascular risk factors control was suboptimal. Both awareness and application of recommended guidelines need to be reinforced.

ObjectivesMany factors affect caregiver burden. Limited studies exist on the effect of social support and fatigue on family caregivers. This study aims to explore the impact of fatigue and social support on the burden experienced by family caregivers of palliative care patients.MethodsThe study was conducted with 80 family caregivers. Data were collected using the Piper Fatigue Scale, the Burden Interview, and the Multidimensional Scale of Perceived Social Support. Regression analysis was used to evaluate the data.ResultsThe regression analysis revealed that higher scores on the MSPSS were significantly associated with lower Burden Interview scores (p < 0.05). Conversely, higher PFS scores were significantly correlated with increased Burden Interview scores (p < 0.05).DiscussionBoth fatigue and social support play a critical role in shaping the caregiving burden experienced by family caregivers. Interventions aimed at reducing caregiver fatigue and enhancing social support may help alleviate this burden.

Introduction: This study aimed to compare the mental health, quality of life, and caregiving burden between male and female informal caregivers of older adults (≥60 years) during the second wave of the COVID-19 pandemic in Germany. Methods: The sample consisted of 301 female and 188 male informal caregivers of older adults in need of care (≥60 years). Data were used from a cross-sectional study in March 2021 that questioned a representative sample of adults aged 40 years and older from Germany. Information on informal care provision, mental health (depressive and anxiety symptoms), caregiving burden, and quality of life was assessed for the period between December 2020 and March 2021. Regression analyses, adjusted for (1) the sociodemographic background and health of the caregivers, (2) the caregiving time and caregiving tasks, and (3) the perception of impairment and danger posed by the pandemic, were conducted. Results: Findings of the fully adjusted model indicated a higher level of anxiety and lower quality of life among female caregivers, compared to male caregivers. Gender differences in depression and caregiver burden were not significant in analyses that controlled for care tasks and time. Moderator analyses indicated that gender differences in caregiver’s anxiety levels were influenced by the danger perceived to be posed by the pandemic: among men the danger to the care recipient, and among women the danger to themselves, increased anxiety. Conclusion: Female informal caregivers were more negatively affected than male informal caregivers during the pandemic, as indicated by higher levels of anxiety and lower quality of life. Gender differences in anxiety depended on the perceived danger posed by the pandemic. Thus, policy and pandemic measures should focus on gender-specific support of female caregivers who seem to be particularly vulnerable during the pandemic. More caregiver-specific support and information around protecting themselves and their care recipients are recommended. Also, further research on gender differences in care performance and their relation to psychosocial health outcomes is recommended.

Previous reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis. To investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden. This was a population-based cohort study in Nueces County, Texas. Participants who scored less than 20 on the Montreal Cognitive Assessment (MoCA) were classified as having probable dementia. Diagnosis unawareness was defined as participants with probable dementia who had not been told that diagnosis by a healthcare provider. Logistic regression models examined the association of ethnicity and dementia diagnosis unawareness. A negative binomial regression was used to assess the association of dementia diagnosis unawareness and caregiver burden. Eighty-one percent of eligible participants were not aware of a dementia diagnosis. Mexican American participants (MAP) were more likely to be unaware of a diagnosis (85%, 95% CI 81-89%) than non-Hispanic white participants (NHWP) (68%, 95% CI 58-75%). Only 6.6% of the participants with probable dementia had no primary care provider, with no observed association between diagnosis unawareness and lack of primary care. Diagnosis unawareness was not associated with caregiver burden (IRR = 0.93, 95% CI 0.77-1.14) but was associated with lower MoCA score (IRR = 0.98, 95% CI 0.96-1.00) and greater physical impairment (IRR = 1.06, 95% CI 1.03-1.10). Dementia diagnosis unawareness was very high in this community. MAPs are more likely to be unaware of a diagnosis than NHWPs. Lack of access to primary care and caregiver burden were not associated with dementia diagnosis unawareness. Study registered at clinicaltrials.gov NCT03403257.

There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; <em>p</em>=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; <em>p</em>=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; <em>p</em>=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; <em>p</em>=0.02), emergency room visits (31.8% vs 13.0%; <em>p</em>=0.02) and pharmacy services (95.3% vs 70.4%; <em>p</em>=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; <em>p</em>=0.03). Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services.

Objective This is the first prospective cohort study of Huntington’s disease (HD) in Korea. This study aimed to investigate the caregiver burden in relation to the characteristics of patients and caregivers.Methods From August 2020 to February 2022, we enrolled patients with HD from 13 university hospitals in Korea. We used the 12-item Zarit Burden Interview (ZBI-12) to evaluate the caregiver burden. We evaluated the clinical associations of the ZBI-12 scores by linear regression analysis and investigated the differences between the low- and high-burden groups.Results Sixty-five patients with HD and 45 caregivers were enrolled in this cohort study. The average age at onset of motor symptoms was 49.3 ± 12.3 years, with an average cytosine-adenine-guanine (CAG)n of 42.9 ± 4.0 (38–65). The median ZBI-12 score among our caregivers was 17.6 ± 14.2. A higher caregiver burden was associated with a more severe Shoulson–Fahn stage (p = 0.038) of the patients. A higher ZBI-12 score was also associated with lower independence scale (B = -0.154, p = 0.006) and functional capacity (B = -1.082, p = 0.002) scores of patients. The caregiving duration was longer in the high- than in the low-burden group. Caregivers’ demographics, blood relation, and marital and social status did not affect the burden significantly.Conclusion HD patients’ neurological status exerts an enormous impact on the caregiver burden regardless of the demographic or social status of the caregiver. This study emphasizes the need to establish an optimal support system for families dealing with HD in Korea. A future longitudinal analysis could help us understand how disease progression aggravates the caregiver burden throughout the entire disease course.

BackgroundTelemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear.ObjectiveThis study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care.MethodsA systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio.ResultsA total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P<.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P=.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P=.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P=.21; 95% PI −2.15 to 2.85).ConclusionsAlthough telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

BackgroundProviding informal care for a person with Parkinson’s disease (PD) can be a demanding process affecting several dimensions of a caregiver’s life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden.MethodsWe conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson’s Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson’s Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively.ResultsA total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism.ConclusionsThe burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Providing care to an adult loved one is often described as a burden, but it can also promote flourishing. The present study examined the extent to which state hope and emotion regulation strategies of positive reappraisal and emotional suppression might account for the relation of burden on both burnout and flourishing in a sample of 162 informal caregivers (54.8% women; Mage = 42.92, SDage = 13.22). It was hypothesized that state hope would mediate the relationship between caregiver burden and both outcomes, with state hope being positively related to flourishing and negatively related to burnout. It was also hypothesized that positive reappraisal and emotional suppression would mediate the relationship between caregivers’ burden and the outcomes, with positive reappraisal predicting greater flourishing and emotional suppression predicting greater burnout, as well as less flourishing. Participants were recruited from the Prolific crowd sourcing platform and had been pre-screened as informal and unpaid caregivers of an adult. They completed a battery of questionnaires that were all self-report in nature for the cross-sectional design. Results indicate that only state hope mediated the relationship between caregiver burden and the outcomes of burnout and flourishing. Contrary to what was hypothesized, emotion regulation strategy was not a mechanism in these relationships. State hope could be a potential avenue for intervention for informal caregivers in that it may impact caregiver burden as well as burnout and flourishing.