"They forget that I'm a human being"-ward round communication with older patients living with frailty and informal caregivers: a qualitative study.

PURPOSE: Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. METHODS: We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. RESULTS: The study included 15 patients and 15 informal caregivers. Patients had a median age of 85 years (range 75-100 years) and seven patients were females. Informal caregivers' median age were 45 years (range 38-80 years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. CONCLUSIONS: Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

The impact of family burden on the psychological distress of informal caregivers for older adults living with dementia: The role of internal and external coping resources.

OBJECTIVES: Numerous studies have demonstrated that informal caregivers of people living with dementia (PLWD) have serious adverse psychological problems, but little research has been done on the role of integrating caregivers' various coping resources in reducing psychological effects. Therefore, the current study aimed to investigate the impact of caregivers' internal (self-efficacy and positive coping) and external coping resources (family function and social support) on the family burden and psychological distress. METHODS: A cross-sectional study, and a self-designed questionnaire, Family Burden Scale of Disease, Kessler Psychological Distress Scale, General Self-Efficacy Scale, Simplified Coping Style Question, The Family Adaptation, Partnership, Growth, Affection, Resolve Scale and Social Support Rating Scale were completed by 193 pairs of PLWD and caregivers. Partial least squares-structural equation modeling (PLS-SEM) was used to analyze the mediating effects of coping resources. RESULTS: Self-efficacy, positive coping, family function, and social support respectively mediated the relationship between family burden and psychological distress (ß = 0.402, ß = 0.059, ß = -0.111, ß = 0.053; P < 0.05). Besides, the serial mediation effects of self-efficacy and positive coping, family function and social support were also significant (ß = 0.104, ß = 0.045; P < 0.05). CONCLUSIONS: This study confirmed the mediating role of internal and external coping resources between family burden and psychological distress in caregivers of older PLWD, providing a theoretical basis for promoting the,mental health of caregivers.

Effects of Songwriting Group Music Therapy Program among Informal Caregivers of Older Adults with Dependency.

Informal caregivers of older people face demanding responsibilities that can negatively affect their wellbeing, highlighting the relevance of interventions that address their specific needs. This study aimed to assess the effects of a group music therapy program based on different songwriting approaches applied to informal caregivers of older adults with dependency. A sample of 113 caregivers participated, being assigned either to the intervention (n = 60) or the control group (n = 53). The intervention group caregivers received 10 weekly sessions of the songwriting program, while the control group continued with their usual care service. Psychological symptoms and health-related quality of life (HRQoL) were assessed at baseline and follow-up using the State-Trait Anxiety Inventory, Beck Depression Inventory-II, Zarit Burden Interview, and SF-36. Group × Time interactions revealed significant improvements in the intervention group compared to the control one in trait anxiety (p = 0.022), social functioning (p = 0.013), role limitations due to physical problems (p = 0.020), and physical component summary (p = 0.022). These findings provided valuable evidence on this novel intervention, showing positive effects for caregivers' wellbeing. The current research emphasizes the importance of considering music therapy as a potential intervention among caregiver support programs.

Preparedness for caregiving among informal caregivers of people with dementia: A scoping review.

INTRODUCTION: Dementia is a global health concern, and informal caregivers often provide care for those affected. Caregiver preparedness is crucial for optimizing quality of life. However, knowledge about the determinants of caregiver preparedness is limited. PURPOSE: The aim of this scoping review was to identify the factors associated with preparedness for caregiving among informal caregivers of people with dementia. METHODOLOGY: The review adhered to the methods from the Joanna Briggs Institute. Studies exploring the preparedness of informal caregivers of people with dementia were included in this review. Data were extracted from studies found in five major databases: PubMed, PsycINFO, Scopus, CINAHL, and Embase. RESULTS: The final review included twenty-three studies. Self-efficacy and confidence, resilience and self-conduct, knowledge, education and training, mutuality, mental health, less caregiving conflict, and mindfulness were associated with caregiver preparedness. CONCLUSION: This review identified a significant research gap in preparedness among caregivers of people with dementia. More research is essential to understand the factors associated with caregivers' preparedness. Recognizing these elements can inform tailored interventions, assisting informal caregivers in their caregiving transition and journey.

A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers.

OBJECTIVES: The primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DESIGN: The researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 "quite frequently" or 4 "nearly always"). RESULTS: The quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. CONCLUSION: The study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

Association between stigma and quality of life among chronic refractory wounds patients and informal caregivers: an actor-partner interdependence model analysis.

PURPOSE: The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers. METHODS: We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023. RESULTS: We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A1: ß = - 1.27, Path A2: ß = - 0.37, Path P1: ß = - 0.08, Path P2: ß = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A4: ß = - 0.65, Path P4: ß = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P3: ß = - 0.17), whereas it does not significantly affect their own physical QoL. CONCLUSION: There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL.

Caregiving risk perception characteristics and associated factors among informal caregivers of functionally dependent elderly individuals at home: a qualitative study.

BACKGROUND: This study explored risk perception characteristics and influencing factors among informal caregivers of functionally dependent elderly individuals at home, aiming to improve caregivers' caregiving risk perception and coping abilities and ultimately enhance the quality of life for these individuals. METHODS: We used purposive sampling to select 22 informal caregivers from a community in Zhengzhou City, Henan Province, China, between March and September 2023 and conducted face-to-face semi-structured in-depth interviews. The data were analyzed using Colaizzi's seven-step analysis method. RESULTS: We extracted two themes, caregiving risk perception characteristics and caregiving risk perception associated factors, and eight sub-themes, perceived risk possibility, perceived risk anticipation, perceived severity of consequences, past caregiving experiences, health literacy, psychological status, caregiving burden, and family social support. CONCLUSION: There were differences in how informal caregivers perceived the risks associated with caring for functionally dependent elderly individuals at home, which various factors could influence. It was essential to provide training that covered the knowledge and skills needed for caregiving, improve caregivers' awareness of safety risks, and establish a correct perception of caregiving risks. The government must construct and refine a comprehensive framework for caregiver respite services. Simultaneously, healthcare professionals should proactively undertake health education endeavors to augment the recognition of care safety risks among informal caregivers, thereby cultivating an accurate awareness of care risk perception.

Sociodemographic Determinants of Psychological Distress Among Adult Informal Caregivers.

Background and objective Providing care for a loved one with a chronic illness or disability can be mentally and emotionally challenging. Determining the factors that contribute to psychological distress among informal caregivers can be important in developing effective interventions to support this vulnerable population. This study aimed to examine the sociodemographic determinants of psychological distress among adult informal caregivers in the United States. Research design and method Secondary data analysis using the 2022 Health Information National Trends Survey was conducted. A total of 807 informal caregivers were included in the study. Sociodemographic characteristics, caregiving conditions, and caregivers' relationship to care recipients were assessed. Psychological distress was measured using Patient Health Questionnaire 4. Weighted multivariate logistic regression analysis was conducted to determine the associations between sociodemographic factors and psychological distress. Results The prevalence of psychological distress was 40%. The average age of the sample was 56 years with most caregivers being female and non-Hispanic White. Older age was associated with lower odds of distress (OR=0.974, 95% CI: 0.949-0.999). Female caregivers had higher odds of distress compared to males (OR=1.922, 95% CI: 1.023-3.612), and caregivers with household incomes of $75,000 or more had significantly lower odds of distress compared to those with incomes below $35,000 (OR=0.266, 95% CI: 0.119-0.595). Race/ethnicity and educational level did not show significant associations with caregiver distress. Conclusion Younger age, female birth gender, and lower household income were associated with higher odds of distress among informal caregivers. These findings can inform the development of targeted interventions to support caregivers' mental health.

Empowering of Oncology Patients and Informal Caregivers: Analysis of an Interdisciplinary Seminar Model for Breast Cancer and Gyneco-Oncological Patients.

INTRODUCTION: The interdisciplinary empowerment seminar aims to familiarize patients and informal caregivers (ICs) with supportive measures, focusing on understanding disease, therapy, and side effect management. METHODS: The seminar, conducted in two courses over 1-month intervals prior to chemotherapy, included lectures, supportive materials, Q and A sessions, and individual discussions with experts in nutrition, exercise, psycho-oncology, and complementary medicine. Evaluation is based on a self-developed questionnaire and questionnaires on QoL (EORTC-QLQ-C30, BR23, CX24, OV28), anxiety and depression (HADS-D) at week 0, 5, 9, and 12. A control group with standard of care was evaluated at baseline and after 12 weeks. RESULTS: Between October 2020 and May 2021, 19 patients and 9 ICs participated in the seminar. The control group included 20 patients. 96.4% of participants were highly satisfied with the seminar and would recommend it. QoL deterioration was more pronounced in the control group (control: week 0 = 67.6; week 12 = 61.7; intervention: week 0 = 60.8; week 12 = 60.7). This trend could not be proven by analysis of interaction (mixed ANOVA: p = 0.114). Increased confidence of participants' knowledge about side effects was shown, and ICs reported higher confidence in knowledge and coping with the disease. CONCLUSIONS: The seminar received positive feedback and indicated increased knowledge and a trend toward better QoL preservation. Larger studies are needed for confirmation. The seminar effectively addressed unique needs, bolstering confidence and knowledge. Interdisciplinary patient and caregiver empowerment seminars can improve disease-related knowledge and positively affect QoL at the start of chemotherapy. Informational needs can be satisfied. Offering educational seminars and fostering individualized support networks can increase quality of care.

"He is changing, but I'm changing too": An interpretative phenomenological analysis of spouse caregivers' identity in the context of dementia.

OBJECTIVE: This study explores the process through which informal caregivers, particularly spouses, construct their identity within the context of caregiving for individuals with dementia. Despite extensive research in psychology aimed at defining caregiving (e.g. tasks, consequences), few informal caregivers identify themselves as such. For instance, the affective bond shared between caregivers and care-recipients often imbues caregiving responsibilities with a sense of "naturalness," especially if the care-recipient is a spouse. METHODS: To investigate the nature of caregiver identity construction, eight semi-structured interviews were conducted with spouse caregivers of dementia patients. The collected data underwent interpretative phenomenological analysis (IPA). RESULTS: Three interconnected themes emerged from the analysis: (1) Perceiving changes in my partner, which involves recognising alterations in the care-receiver's characteristics due to dementia; (2) Processing changes, encompassing the experience of grieving losses and reminiscing about the past; and (3) Perceiving changes in myself, referring to the acknowledgement of personal changes due to caregiving. CONCLUSION: The study emphasises the dynamic and ongoing nature of caregiver identity construction, which begins with the early recognition of changes in the care-receiver. Interestingly, spouse caregivers oscillate between their identity as a spouse and caregiver, influenced by how they process changes undergone by their partner. Contrasting with previous theories on caregivers' identity, our results focus of caregivers' perceptions rather than their relationship with the care-recipient or caregiving tasks.

Predicting informal dementia caregivers' desire to institutionalize through mining data from an eHealth platform.

BACKGROUND: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country. METHODS: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions. RESULTS: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1-2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86). CONCLUSIONS: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing.

Geographical location as a determinant of caregiver burden: a rural-urban analysis of the informal caregiving, health, and healthcare survey in Ghana.

BACKGROUND: The caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana. METHODS: This study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less. RESULTS: The results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (ß = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: ß = 12.63; SE = 1.65; fair: ß = 9.56; SE = 1.07; good: ß = 11.00; SE = 0.61, very good: ß = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: ß = 13.88; SE = 2.4; fair: ß = 6.11; SE = 1.62; good: ß = 9.97; SE = 0.96, very good: ß = 6.06; SE = 0.71) and urban (poor/very poor: ß = 11.86; SE = 2.25; fair: ß = 12.33; SE = 1.42; good: ß = 11.80; SE = 0.79, very good: ß = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (ß = -2.92, p-value < 0.01) and for both rural (ß = -3.20; p-value < 0.01) and urban (ß =-2.70; p-value < 0.01) participants. CONCLUSION: The findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries.

Emotional Regulation, Coping, and Resilience in Informal Caregivers: A Network Analysis Approach.

Public health emergencies such as the COVID-19 pandemic can further strain the mental health of informal caregivers who provide unpaid assistance to family members or friends who need support due to illness, disability, or aging. However, there is a lack of research exploring the resources and adaptive strategies that promote resilience in informal caregivers. This cross-sectional study used psychometric network analysis to model the interplay between coping strategies, emotion regulation, trait resilience, and anxiety and depression symptoms in 351 Italian informal caregivers. The results showed that coping through a positive attitude, emotional reappraisal, and trait resilience were the most central and interconnected nodes in the network. These adaptive strategies buffered against the negative impact of anxiety and depression symptoms, providing valuable insights into the mechanisms underlying resilience and well-being in informal caregivers. Clinically, it is crucial to assess and foster these resilience-promoting factors (positive attitude coping, cognitive reappraisal, and trait resilience) to help mitigate the mental health challenges faced by informal caregivers, especially in the context of public health crises such as the COVID-19 pandemic.

Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study.

Background: This study explores heart failure (HF) dyadic contextual factors and caregiver burden during acute exacerbation hospitalization and discharge. Methods: It employed a mixed-methods approach, with HF dyads completing questionnaires and semi-structured interviews at a one-week post-discharge outpatient visit. Quantitative tools included the SF-12 Quality of Life, Zarit Burden Interview (ZBI), Bakas Caregiving Outcomes Scale (BCOS), and Self-Care of Heart Failure Index v. 6 (SCHFI). Thematic analysis was conducted on interview data to assess caregiver burden, disease trajectory, comorbidities, caregiving time, and employment status. Results: Twelve HF dyads participated, with caregivers (six female, six male) averaging 65.76 years. The ZBI indicated a low caregiver burden (median score of 15), but qualitative data revealed a higher perceived burden related to social isolation, future fears, and caregiver dependence. Male caregivers reported a lower burden than females. Positive goal congruence was noted in caregiving hours and HF management compliance. HF patients had a 10-year survival prediction of 22.75% per the Charlson Comorbidity Index, with 69% in NYHA class III and an average ejection fraction of 37.7%. Caregivers working full-time and caring for higher NYHA-class patients showed higher ZBI and BCOS scores. Conclusions: The study highlights the need for mixed methods and longitudinal research to understand HF disease trajectory and caregiver burden, emphasizing the importance of including caregivers in HF education and screening for perceived burden to improve outcomes and reduce re-hospitalizations.

Systematic review following COSMIN guidelines: Short forms of Zarit Burden Interview.

This comprehensive review assessed the psychometric properties of abbreviated versions of the Caregiver Burden Instrument (ZBI-22). Initially, 40 articles that met the inclusion criteria were identified through a systematic search of four databases. Additionally, 26 articles were included through manual searches, totaling 66 articles in the analysis. Different versions of instruments measuring caregiver burden were examined, considering item variability and differences in factor structures. Although most measures exhibited satisfactory content validity, as well as construct validity supported by high internal consistencies, it is important to note that measurement invariance, criterion validity and test-retest reliability were not established for all measures analyzed. Furthermore, structural validity was not satisfactory for all versions. Research and clinical practice could benefit from a standardized approach that allows for a more accurate and consistent assessment of caregiver strain.

Associations of mental health with vaccination readiness in informal caregivers and the vaccination status of their care recipients during the Covid-19 pandemic - A cross sectional analysis.

INTRODUCTION: Vaccinations are important for informal caregivers and their care recipients. Mental health problems are common among care givers. The aim of this study was to investigate vaccination readiness in informal caregivers and associations with mental health issues. Associations between vaccination readiness in informal caregivers and the vaccination status of their aged care recipients were examined. METHODS: Within the multicenter prospective registry study 'Bavarian ambulatory Covid-19 Monitor (BaCoM) ', informal caregivers were asked for symptoms of depression (PHQ-9), burden of caretaking (BSFC-s), psychological antecedents of vaccination readiness (5C model) and previous Covid-19 infections of their care recipients. The vaccination status against Covid-19, seasonal influenza and pneumococcal disease was determined via vaccination certificates. Data analysis was performed using ordinal regressions and Mann-Whitney-U tests. RESULTS: Data of n = 91 informal caregivers, associated with n = 84 care recipients were collected. Symptoms of depression were associated with reduced vaccination readiness (Calculation: p = 0.026, OR = 1.18), as well as the perceived burden of caretaking (Confidence: p = 0.006, OR = 0.88). A previous Covid-19 infection of the care recipients was associated with decreased vaccination readiness of informal caregivers (Median (Q1-Q3) Confidence: 5.0 (4.5-6.0) vs. 4.0 (3.0-5.0); Calculation: 5.0 (3.0-6.0) vs. 4.0 (1.0-5.0)). The vaccination status of the care recipients interrelated significantly with vaccination readiness of their informal caregivers (Confidence: p < 0.001; Complacency: p < 0.01; Constraints p < 0.05). No significant interrelations between vaccination readiness and the vaccination status against seasonal influenza or pneumococcal disease occurred. CONCLUSION: Mental health issues of informal caregivers seem to be associated with the actual vaccination status against Covid-19 in their care recipients. Target group specific counselling as well as an active involvement of informal caregivers in shared decision-making processes can be of relevance, but even more attention should be paid to the protection of mental health for informal caregivers. TRIAL REGISTRATION NUMBER: German Register of Clinical Studies DRKS 26039.

The role of coping and positivity in shaping mental health among Portuguese informal caregivers.

The role of informal caregivers is increasingly relevant in the current sociodemographic context, with Portugal having an estimated 1.3 million caregivers. This study explores the relationship between coping strategies, Positive Life Orientation (PLO), and mental health among 133 Portuguese informal caregivers. Using a quantitative, cross-sectional methodology, results show a significant association between specific coping strategies, PLO, and variables related to distress and well-being. PLO and instrumental support positively predict well-being, while duration of care and self-blame and PLO positively predict depression, and positive reappraisal and positivity negatively predict depression. Religion, self-blame, and seeking emotional support are positively associated with anxiety, while religion, self-blame, and seeking emotional support positively predict stress, and positivity negatively predicts stress. PLO emerges as the strongest predictor of well-being. These findings underscore the importance of coping strategies and PLO in understanding informal caregivers' mental health, informing the development of personalized interventions tailored to their unique needs.

Dehumanization and Minimization of Informal Caregivers Suffering: The Legitimizing Role of Justice Perceptions.

Informal caregivers, who provide unpaid care work to individuals with disabilities, are devalued despite their important contributions to society. Identifying the factors contributing to their devaluation is crucial for recognizing and valuing their work. In two experimental studies, we examined (a) whether informal caregivers are dehumanized; (b) the moderating impact of belief in a just world (BJW) on this process; and (c) the predictive impact of BJW and the dehumanization of informal caregivers on the perception of informal caregivers' suffering. In Study 1 (N = 180), a 2 (informal caregiver vs. non-caregiver) X 2 (female vs. male) between-participants design was used; in Study 2 (N = 205), there were two experimental conditions: female informal caregiver vs. male informal caregiver. Participants were randomly assigned to one description of a target and were asked to complete measures assessing the dehumanization of the target (Studies 1 and 2), the perception of the suffering of the target (Study 2), and a measure of BJW referring to themselves (Study 2). Results showed the expected dehumanization effect, such that participants attributed fewer uniquely human emotions to informal caregivers compared to non-caregivers, regardless of their gender (Studies 1 and 2). However, this effect was observed only among participants with higher BJW (Study 2). Furthermore, BJW and the dehumanization of informal caregivers predicted the minimization of the perception of informal caregivers' suffering (Study 2). These results establish a theoretical relationship between these research areas and offer insights for practical implications and future research.

Self and proxy symptom reporting in glioma patient-caregiver dyads: the role of psychosocial function in rating accuracy.

BACKGROUND: Illness-related communication and depressive symptoms within families may play an important role in caregivers' ability to accurately understand patients' symptom burden. We examined the associations between these psychosocial factors and symptom accuracy in patients with glioma and their family caregivers. METHODS: Patients and caregivers (n = 67 dyads) completed measures of depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Patients reported on their own cancer-related symptoms (MDASI-BT) while caregivers reported on their perception of the patients' symptoms (i.e., proxy reporting). Paired t-tests and difference scores were used to test for agreement (absolute value of difference scores between patients and caregiver proxy symptom and interference severity reports) and accuracy (caregiver underestimation, overestimation, or accurate estimation of patient symptom and interference severity). RESULTS: Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for gastrointestinal symptoms and general symptoms. Among caregivers, 22% overestimated overall symptom severity and 32% overestimated overall symptom interference. In addition, 13% of caregivers underestimated overall symptom severity and 21% of caregivers underestimated overall symptom interference. Patient illness communication was associated with agreement of overall symptom severity (r=-0.27, p = 0.03) and affective symptom subscale (r=-0.34, p < 0.01). Caregivers' reporting of illness communication (r=-0.33, p < 0.01) and depressive symptoms (r = 0.46, p < 0.0001) were associated with agreement of symptom interference. Caregiver underestimating symptom severity was associated with lower patient physical QOL (p < 0.01); caregiver underestimating symptom interference was associated with lower patient physical QOL (p < 0.0001) and overestimating symptom interference was associated with lower patient physical QOL (p < 0.05). Patient and caregiver mental QOL was associated with caregiver underestimating (p < 0.05) and overestimating (p < 0.05) symptom severity. CONCLUSION: The psychosocial context of the family plays an important role in the accuracy of symptom understanding. Inaccurately understanding patients experience is related to poor QOL for both patients and caregivers, pointing to important targets for symptom management interventions that involve family caregivers.

Resilience as a protective factor against depression in informal caregivers.

Introduction: Although previous research has demonstrated that resilience can be protective against various mental health conditions such as depression, existing studies examining the relationship between resilience and depression have limitations. To our knowledge, the moderators of the relationship have not been examined. The aim of this study was to determine whether resilience acts as a protective factor against depression in informal caregivers and to examine potential moderators of the relationship between these variables. Methods: In this cross-sectional study, 554 randomly selected informal caregivers participated (86.8% women, average age = 55.3 years). Major depressive episode, depressive symptomatology, resilience, positive environmental reward, negative automatic thoughts, self-efficacy, and personality were assessed. Results: A total of 16.1% of informal caregivers met criteria for a depressive episode and 57.4% were at risk of developing depression. The average resilience score was 26.3 (SD = 7.6); 62.6% of participants were in the lower quartile of the resilience scale. The gender of the informal caregiver and self-efficacy acted as moderating variables in the relationship between resilience and depression. The impact of resilience on depressive symptoms was more pronounced in female informal caregivers, and increased as self-efficacy increased. Discussion: Based on these findings, programs aimed at preventing depression in informal caregivers should focus on promoting resilience, especially in women, and introduce strategies to enhance self-efficacy to increase their impact.