Effectiveness of LESTARI (Longitudinal Education and Skills Training in DementiA: Research and Implementation for Informal Caregivers) – A Protocol for Pilot Experimental Study

We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.

Introduction: Stroke is a common neurological disorder characterized by long term dependency of patient on family members and need rehabilitation at home with consequent disturbances in certain areas of life of caregivers. The aim of the study was to examine specific nature of the burden and to estimate the relative influence of caregivers’ characteristics on burden in caregivers. Methods: A cross sectional descriptive survey was carried out by recruiting 100 caregivers purposively in selected rural community setting Punjab, India. WHOQOL-BREF scale and Zarit burden interview (ZBI) schedule was used to measures quality of life and burden in caregivers. Explanatory factors of burden were studied in term of personal and caregiving characteristics of caregivers. Descriptive statistics was applied to compute level of burden and simple and multiple linear regression analysis was applied to identify true predictors of burden in caregivers. Results: Caregivers of stroke survivors perceived varied pattern of burden. The most caregiving burden felt in term of feeling disturbance in relationship, loss of control in life and feeling more personal strain. Multiple regression analysis revealed that a higher level of burden could be partially explained by caregivers characteristics in term of female gender (β=0.275, p<0.042), private employment (β=0.233, p<0.049), and significant history of stroke (β=0.388, p<0.000). Findings reported good quality in social relation domain in caregivers. Conclusions: Caregivers of stroke survivors facing varied level of burden. Sharing responsibility, availability of family support in care and providing financial assistance may be important in the support of caregiving and improvement of quality of life. Study also suggested development of home rehabilitation programme to improve upon quality of life in caregivers of stroke survivors.

Introduction: Stroke is a common neurological disorder characterized by long term dependency of patient on family members and need rehabilitation at home with consequent disturbances in certain areas of life of caregivers. The aim of the study was to examine specific nature of the burden and to estimate the relative influence of caregivers’ characteristics on burden in caregivers. Methods: A cross sectional descriptive survey was carried out by recruiting 100 caregivers purposively in selected rural community setting Punjab, India. WHOQOL-BREF scale and Zarit burden interview (ZBI) schedule was used to measures quality of life and burden in caregivers. Explanatory factors of burden were studied in term of personal and caregiving characteristics of caregivers. Descriptive statistics was applied to compute level of burden and simple and multiple linear regression analysis was applied to identify true predictors of burden in caregivers. Results: Caregivers of stroke survivors perceived varied pattern of burden. The most caregiving burden felt in term of feeling disturbance in relationship, loss of control in life and feeling more personal strain. Multiple regression analysis revealed that a higher level of burden could be partially explained by caregivers characteristics in term of female gender (β=0.275, p<0.042), private employment (β=0.233, p<0.049), and significant history of stroke (β=0.388, p<0.000). Findings reported good quality in social relation domain in caregivers. Conclusions: Caregivers of stroke survivors facing varied level of burden. Sharing responsibility, availability of family support in care and providing financial assistance may be important in the support of caregiving and improvement of quality of life. Study also suggested development of home rehabilitation programme to improve upon quality of life in caregivers of stroke survivors.

BACKGROUND:Previous studies showed that family caregivers of hemodialysis patients have low level of quality of life. However, these caregivers are mostly neglected, and no studies are available on improving their quality of lives. Therefore, this study aimed to examine the effects of supportive educative program on the quality of life in family caregivers of hemodialysis patients.MATERIALS AND METHODS:A randomized controlled clinical trial was conducted on 76 family caregivers of hemodialysis patients referred to Shahid Hasheminejad Hemodialysis Center in Tehran, Iran in 2015. The subjects were equally allocated into two groups of 38. Caregivers of patients were randomly assigned into the intervention group and the control group. The intervention group received six training sessions on supportive educative program. Both groups answered demographic information and short form-36 questionnaires before and 6 weeks after the intervention. Descriptive statistics, Chi-square and Fisher exact tests, independent samples t-test, and t-couple, was used to analyze the data.RESULTS:No significant difference was found between the baseline mean scores of “quality of life” of the intervention and the control groups (P = 0.775). However, the mean scores of quality of life of the intervention group increased at the end of the study, and the two groups were significantly different in this regard (P < 0.001).CONCLUSIONS:Supportive educative program improved the quality of life in caregivers of hemodialysis patients. Therefore, it is suggested that health system managers encourage their staff to implement such programs for improving the health status of the caregivers.

BackgroundCaregiver burden may be either a predictor or an outcome of caregiver quality of life (QoL). Patient or caregiver factors that directly affect caregiver QoL, predictors that are simultaneously shared with caregiver burden and QoL, and factors that affect caregiver QoL through caregiver burden are not well understood. This study explored predictors of caregiver QoL and identified whether caregiver burden is a mediator for caregivers of first-time stroke patients.MethodsThis is a cross-sectional study. We recruited first-time stroke patients who had been discharged from the hospital within 1 year. We screened caregivers with two major inclusion criteria: age > 20 years old and being the family member who provides the most patient-care hours out of all family caregivers. Caregiver burden (Caregiver Strain Index, CSI), QoL (Caregiver Quality of Life Index, CQLI), and patient and caregiver characteristics were assessed with structured questionnaires. Multiple-regression and bootstrap analysis were conducted for data analysis.ResultsA total of 126 caregivers completed the questionnaires. Higher caregiver burdens, lower caregiver education level, lower self-rated health, lower monthly family income, and spouses who were responsible for medical fees were significant predictors of lower caregiver QoL. Poor self-rated health and monthly family income of $ 666 USD or below were the strongest predictors of caregiver QoL. Spouses who were responsible for medical fees and lower monthly family income had direct negative effects on caregiver QoL, but these factors exhibited no indirect mediating effect between caregiver characteristics and QoL through caregiver burden as a mediator. Caregiver education level at or below elementary school and poor or fair self-rated-health had direct negative effects on caregiver QoL, which were mediated by caregiver burden.ConclusionsOur study indicated predictors of caregiver QoL and the relationships with caregiver burden among first-time stroke survivors in the early stage. Caregivers’ financial factors affected caregiver QoL directly. Caregivers’ poor self-rated health and lower education level negatively affected caregiver QoL indirectly through caregiver burden as a mediator. Interventions to make appropriate policies for financial subsidies, to enhance caregivers’ health and to provide tailored stroke-related education through multidisciplinary cooperation may effectively promote caregiver QoL.

Paediatric HIV and sickle cell disease (SCD) are two stigmatising and potentially fatal illnesses that place a significant burden on families. HIV patients benefit from a longstanding free-service national programme in Cameroon, and this could considerably alleviate burden of care on HIV caregivers, possibly leading to better quality of life (QoL) in HIV caregivers compared to SCD caregivers. Our study aimed to compare the QoL between caregivers of children and adolescents with SCD and HIV and explore factors associated with this QoL in Cameroon. We conducted a hospital-based cross-sectional analytic study at Douala Laquintinie Hospital from February to May 2023. A questionnaire was administered to caregivers of paediatric patients (≤18 years) with SCD and HIV. The Pediatrics Quality of Life-Family Impact Module (PedsQL FIM), the 7-item Generalized Anxiety Disorder (GAD-7), and the 9-item Patient Health Question (PHQ-9) tools were used as measures of quality of life, anxiety, and depression, respectively. Multivariable linear regression was used to determine factors associated with quality of life. A significance level was set at p < 0.05. We included 199 caregivers: SCD = 104 and HIV = 95. The mean age of caregivers in our sample was 40.47 ± 10.18 years. Caregivers of paediatric patients with HIV had a better mean quality of life than SCD (93.01 ± 7.35SD versus 64.86 ± 9.20SD, p < 0.001). PHQ-9 score (B = -1.52, 95% CI = [-2.08; -0.96], p=<0.001), GAD-7 score (B = -1.46, 95% CI = [-2.09; -0.83], p=<0.001), spending less than 75 000 FCFA on medications monthly (B = 12.13, 95% CI = [5.73; 18.94], p=<0.001), and being a SCD caregiver (B = -11.62, 95% CI = [-18.46; -4.78], p=0.001) were factors independently associated with quality of life on multivariable analysis. Quality of life is lower in caregivers of children and adolescents with SCD than with HIV. Preventing depression and anxiety as well as advocating for the subsidization of medications through a national SCD program may improve quality of life in SCD caregivers.

Heart failure is a chronic disease requiring lifetime self-management at home by patients, who often require additional support. However, the long-term nature of this self-management presents great challenges for both heart failure patients and their family caregivers. The role of family caregivers is critical, but little is known about the relationship between the burden, stress, depressive symptoms, and quality of life in the family caregivers of heart failure patients. We aimed to explore caregiver burden, stress, depressive symptoms, and quality of life in both patients with heart failure and their family caregivers and identify the factors associated with family caregivers’ quality of life.The sample included 120 participants (60 heart failure patients and 60 corresponding family caregivers) from cardiovascular outpatient clinics at 2 university-affiliated hospitals in South Korea from September 2018 to July 2019. The mean ages of the heart failure patients and their caregivers were 72.72 (SD = 12.73) and 57.03 (SD = 13.42) years, respectively. Caregiver burden (r = −0.601, P < .001) and caregiver depressive symptoms (r = -0.535, P < .001) were negatively correlated with the caregivers’ quality of life. The result of the hierarchical multiple regression analysis identified 3 significant factors related to the family caregivers’ quality of life: caregiver’s age (β = −0.257, P = .012), caregiver burden (β = −0.408, P = .002) and caregiver depressive symptoms (β = −0.298, P = .018), with overall explanatory power of 47.5%.It is necessary to develop practical strategies to improve family caregivers’ quality of life by alleviating their burden and depressive symptoms. Healthcare providers should be engaged with not only heart failure patients but also their family caregivers during the disease management process to improve patients’ outcomes.

Introduction: Providing care to stroke survivors takes a huge toll on caregivers, both physically and emotionally. This study evaluated the influence of duration of caregiving on the burden and Quality of Life (QOL) of informal caregivers (CGs) of stroke survivors. Material and Method: The cross-sectional survey study recruited 100 consenting stroke survivors and their CGs using purposive sampling technique. Caregiving duration and daily caregiving hours were assessed using data capture form. Burden and QOL were assessed with Zarit burden interview and WHOQOL BREF respectively. Data were analysed with Chi-square and Kruskal-Wallis as tests of associations and differences between variables respectively using SPSS version 20 at p=0.05 alpha. Findings: The CGs comprised 56(56%) females and 44(44%) males with mean age of 31.73± 12. About 31% of the CGs had mild burden while 53% had good QOL. Significant association exist between daily caregiving hours and each of CGs QOL (X2=14.716; P=0.003) and burden (X218.23; P=0.003). There were significant differences in the QOL and Burden of CGs based on the daily hours of caregiving (P 0.05). Conclusion: Stroke CGs who perform caregiving tasks for twelve or more daily caregiving hours are likely to experience enormous burden and deterioration of their QOL. But duration of caregiving in months or years has no significant influence on the burden and QOL of CGs.

Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.

The Mediator Effects of Depressive Symptoms on the Relationship between Family Functioning and Quality of Life in Caregivers of Patients with Heart Failure

This article identified social support and family quality of life in caregivers of children with autism spectrum disorder (ASD) and examined the correlations between the two variables. Survey research was conducted with 165 caregivers of children with ASD in Sichuan province of China using the Social Support Rating Scale and Beach Center Family Quality of Life Scale. The results revealed that caregivers of children with ASD perceived a moderate level of social support and a medium level of satisfaction on family quality of life. Social support and family quality of life were significantly positively correlated and social support had a positive predictive power on family quality of life. On this basis, it was suggested to develop a social support program for helping families create a beneficial family environment for the development of children with ASD.

Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T-cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment-related distress in caregivers in the first 6 months after CAR T-cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. Caregivers completed measures examining QOL and burden before patients' CAR T-cell therapy and at days 90 and 180. Treatment-related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p<.01). Conversely, anxiety worsened over time (p<.01). Caregiver burden and treatment-related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p<.01). Worse caregiver treatment-related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps<0.01). Some CAR T-cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T-cell therapy caregivers.

Family caregivers are at a high risk for low quality of life due to caregiving-related stress. Caregivers' stress is commonly assessed using self-reported measures, which reflect relatively subjective and long-term stress related to caregiving, but objective biological markers of stress are rarely used for caregivers. The purposes of this study were (1) to determine whether caregiver characteristics were associated with stress assessed using a stress biomarker (serum cortisol) and a self-reported caregiving distress measure (Caregiver Burden Inventory) and (2) to determine the predictability of both stress measures for quality of life in caregivers of patients with heart failure. Taiwanese family caregivers (N = 113; mean age, 54.5 years; 70.8% female) of patients with heart failure completed surveys including caregiving distress and quality of life measured by the Caregiver Burden Inventory and the Short Form-36 (physical and psychological well-being subscales), respectively, and provided blood samples for serum cortisol. Independent t tests, correlation, and hierarchical regression were conducted. Single caregivers had higher serum cortisol levels than married caregivers ( P = .002). Men had significantly higher serum cortisol levels than women ( P = .010), but men reported lower caregiving distress than women ( P = .049). Both serum cortisol (β = -0.32, P = .012) and caregiving distress (β = -0.29, P = .018) were significant predictors of quality of life in the physical well-being scale while controlling for caregivers' characteristics and depressive symptoms. Serum cortisol (β = -0.28, P = .026) and caregiving distress (β = -0.25, P = .027) also predicted quality of life in the psychological well-being scale. Serum cortisol and self-reported caregiving distress have similar predictability for quality of life in family caregivers of patients with heart failure. Reducing stress and caregiving distress is critical to improving quality of life in this population.

Due to COVID-19, the workload experienced by caregivers has increased markedly which has led them to experience fatigue, anxiety and depression. This study aims to determine the relationship between quality of life and depression in caregivers of post-COVID-19 patients in two regions of Peru. In a cross-sectional analytical study, the sample was non-probabilistic and by snowball, and consisted of 730 caregivers, to whom the questionnaires “Modified Betty Ferell Quality of Life” and the “Beck Depression Inventory” were applied. It was determined that being a male caregiver (OR: 2.119; 95% CI: 1.332–3.369) was associated with a good quality of life. On the other hand, caregivers who had children (OR: 0.391; 95% CI: 0.227–0.675), were vaccinated against COVID-19 (OR: 0.432; 95% CI: 0.250–0.744), were immediate family members (OR: 0.298; 95% CI: 0.117–0.761) and had high depression (OR: 0.189; 95% CI: 0.073–0.490) were associated with poor quality of life. The results of this study allow us to conclude the association between depression and poor quality of life in caregivers of these patients so it is necessary to monitor the mental health of caregivers, and to develop adaptation strategies to pandemic conditions.

ResumenIntroducción:las enfermedades crónicas con parcial dependencia, incluyendo la diabetes mellitus tipo2, modifican el modo de vida del paciente y de su familia, quienes adoptan el rol de cuidador, por lo que tienen que reorganizarse, replantear sus expectativas y adecuar sus metas y objeticos a la situación, generando un deterioro de la calidad de vida y un síndrome de sobrecarga.Objetivo:identificar la relación entre calidad de vida y sobrecarga del cuidador en cuidadores con pacientes con complicaciones por la diabetes mellitus tipo 2 adscritos a la Unidad de Medicina Familiar No. 7. Material y métodos:estudio transversal, realizado con 138 cuidadores con paciente con complicaciones por la diabetes mellitus tipo 2. Para la recolección de los datos, fueron utilizados los instrumentos de perfil sociodemográfico, el cuestionario de salud SF-36 y la escala de Zarit. El análisis se realizó por medio de estadística descriptiva y de la prueba de correlación de Spearman, con un nivel de significancia de p ≤ 0.05.Resultados:se identificó que la calidad de vida relacionada con la salud en los cuidadores con pacientes con complicaciones por la diabetes mellitus tipo 2 evaluada con el cuestionario SF-36 tuvo un valor medio de 74,8; con una puntuación en los componentes físico y mental de 63,9 y de 38,1 respectivamente. Las dimensiones mejor calificadas fueron la función social y física, en cambio, la vitalidad obtuvo menor calificación. Se observó que el 5,05% de los cuidadores presentan sobrecarga ligera y el 5,05% sobrecarga intensa. Conclusiones:los resultados muestran una correlación inversa entre la sobrecarga del cuidador y las dimensiones de calidad de vida, es decir, si disminuye una aumenta la otra; es importante realizar actividades de promoción a la salud en esta población para prevenir la sobrecarga del cuidador.