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Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach. [ABSTRACT FROM AUTHOR]

Purpose: There are over 18 million cancer survivors in the U.S., with a projected increase of 24.4% over the next decade. Currently, little is known about the relationship between a cancer survivor’s caregiving responsibility and their psychological distress. This study examines whether cancer survivors who assume the role of informal caregivers (surviving caregivers) experience greater psychological distress than cancer survivors without caregiving responsibilities. Methods: Data were drawn from the National Cancer Institute’s Health Information National Trends Survey (HINTS5, Cycles 1 through 4, 2017–2020). The analytical sample included 2,579 U.S. cancer survivors. Caregiving responsibility was self-reported, and psychological distress was assessed through the Patient Health Questionnaire-4 (PHQ-4). Accounting for the complex design features of HINTS and jackknife replicate weights, a multivariable multinomial logistic regression model was fit to compute adjusted odds ratios (aORs) and their associated 95% confidence intervals (CIs). Results: Overall, 19.3% of cancer survivors had mild psychological distress, and 10.9% had moderate to severe psychological distress. Approximately 19.1% of the cancer survivors self-reported caregiving responsibilities. Compared to cancer survivors with no caregiving responsibilities, surviving caregivers had more than twofold greater odds of experiencing mild (aOR = 2.25; 95% CI: 1.17, 4.29) and moderate to severe (aOR = 2.18; 95% CI: 1.07, 4.46) psychological distress. Other factors associated with greater psychological distress among cancer survivors included female sex, lower perceived health status, and having one or more chronic diseases. Conclusions: Our findings indicate that caregiving among cancer survivors has a substantial adverse impact on their mental and emotional well-being. Cancer surviving caregivers are a distinct subgroup that navigates both survivorship and caregiving burdens at the same time. There is a need to identify and develop tailored interventions, programs, and resources for this vulnerable group of cancer survivors. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. Methods: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. Results: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients’ emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). Conclusion: Dependent care theory-based post-surgical home care intervention increased patients’ self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. Trial Registration: NCT05328739 on April 14, 2022 (retrospectively registered). [ABSTRACT FROM AUTHOR]

Purpose: Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment with epilepsy surgery or medical therapy over two years. Methods: This multi-center study recruited parents whose children were evaluated for epilepsy surgery. Parents completed measures of care-related QOL (CarerQOL) at the time of their children's surgical evaluation, 6 months, 1 year, and 2 years later. Additional measures included parent anxiety and depression, satisfaction with family relationships, family resources and demands, and child clinical variables. A linear mixed model was used to compare the trajectories of parent HRQOL of surgical and medical patients, adjusting for baseline clinical, parent, and family characteristics. Results: There were 111 children treated with surgery and 154 with medical therapy. The trajectory of parent HRQOL was similar among parents of surgical and medical patients over the two-year follow-up. However, HRQOL of parents of surgical patients was 3.0 points higher (95%CI − 0.1, 6.1) across the follow-up period compared to parents of medical patients. Parents of seizure-free children reported 2.3 points (95%CI 0.2, 4.4) higher HRQOL relative to parents of non-seizure-free children across the two-year follow-up. Conclusion: Parent HRQOL did not improve after their children were treated with epilepsy surgery, possibly related to ongoing comorbidities in children. [ABSTRACT FROM AUTHOR]

Purpose: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. Methods: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver–patient communication) mediated racial and ethnic differences in caregiver burden. Results: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black–White gap for all three types of burdens. Conclusions: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black–White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden. [ABSTRACT FROM AUTHOR]

Purpose: To examine a predictive theoretical model of psychological distress based on the following variables reflected on family caregivers of patients with cancer: the unmet supportive care needs, subjective caregiving burden, social support, and the positive aspects of caregiving. Methods: A cross-sectional descriptive study was conducted on a sample of 484 dyads of patients and their family caregivers. The caregivers completed structured questionnaires designed to measure psychological distress, unmet supportive care needs, subjective caregiving burden, positive aspects of caregiving, and social support. Patients' demographic variables and medical data were collected from a medical record review. We used a structural equation modeling to test the predictive theoretical model. Results: Path analysis results partially supported the proposed model with satisfactory fit indices. Specifically, family caregivers with an increasing number of unmet needs or a heavier caregiving burden were more likely to have more severe psychological distress. Bootstrapping results supported that the caregiving burden and social support were significant mediators. Greater unmet supportive care needs predicted higher psychological distress through increasing caregiving burden. Stronger social support predicted lower psychological distress through decreasing caregiving burden. Positive aspects of caregiving predicted lower caregiving burden through the increasing perceived social support, which in turn eliminated psychological distress. Conclusions: Unmet supportive care needs could cause psychological distress through increasing caregiving burden. The positive aspects of caregiving reduced caregiving burden through increasing social support, which subsequently alleviated psychological distress. Interventions that aim to satisfy supportive care needs, to reduce caregiving burden, and to strengthen social support ties may boost the mental health of family caregivers. [ABSTRACT FROM AUTHOR]

Purpose: Household poverty associated with schizophrenia has been long described. However, the mechanisms by which schizophrenia may have influenced the economic status of a household in rural communities are still unclear. This study aimed to test an integrated model of schizophrenia, social support and caregiving burden on household poverty in a rural community in China. Methods: A mental health survey using identical methods and ICD-10 was conducted in six townships of Xinjin County (population ≥ 15 years old, n = 152,776), Chengdu, China in 2015. Identified persons with schizophrenia (n = 661) and their caregivers completed a joint questionnaire of sociodemographic information, illness conditions, social support and caregiving burden. Descriptive analysis was applied first to give an overview of the dataset. Then, multivariable regression analyses were conducted to examine the associative factors of social support, caregiving burden and household income. Then, structural equation modeling (SEM) was used to estimate the integrated model of schizophrenia, social support, caregiving burden and household income. Results: Households with patient being female, married, able to work and having better social function were better off. Larger household size, higher social support and lower caregiving burden also had salient association with higher household income. The relationship between schizophrenia and household poverty appeared to be mediated by the impacts of schizophrenia on social support and caregiving burden. Conclusion: There was a strong association between schizophrenia and household poverty, in which social support and caregiving burden may had played significant roles on mediating it. More precise poverty alleviation policies and interventions should focus on supporting recovery for persons with schizophrenia, as well as on increasing social support and on reducing family caregiving burden. [ABSTRACT FROM AUTHOR]

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the "Revised Burden Measure" in a sample of parents of children with and without chronic health conditions. The "Revised Burden Measure" and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n = 277) or without (n = 117) chronic health conditions. Classical test theory, item response theory, multi-group confirmatory factor analysis, and multivariate and univariate analyses of covariance were conducted to investigate the reliability and validity of the instrument. The "Revised Burden Measure" was shown to have good reliability, as well as criterion and known-groups validity. The data showed minor DIF by children's health status. Confirmatory factor analyses revealed a second-order model of caregiving burden (with Relationship, Objective and Subjective burdens loading on Overall Burden) and the construct validity of the complementary Uplifts subscale. Additionally, multi-group analyses ascertained the measurement and structural invariance of the model by children's health status. The results generally confirm the reliability and validity of the "Revised Burden Measure" and demonstrate its overall clinical and developmental applicability in pediatric settings. Highlights: The "Revised Burden Measure" is a valid and reliable measure for use in pediatric settings. This clinically informative instrument is easy to administer, score and interpret. The "Revised Burden Measure" enables a comprehensive assessment of negative and positive dimensions of caregiving. This measure may be used to assess the caregiving experience of parents who have children with or without chronic conditions. The instrument is recommended for the assessment of caregiver's burdens and uplifts across different life-span periods. [ABSTRACT FROM AUTHOR]

Purpose: Perceptions of caregiving burden and self-efficacy are found to be associated with well-being among husbands of breast cancer patients (BCP). However, little is known about how individual characteristics associate with such caregiving-related perceptions and cancer caregivers' well-being. This study examined the associations between two individual characteristics (male gender role norms and ambivalence over emotional expression (AEE)) and depressive symptoms among husbands of Chinese BCP, and the potential mediating roles of caregiving burden and self-efficacy in such associations.Methods: Participants (n = 176) were recruited in two hospitals in Weifang, China. Their endorsement of male gender role norms (e.g., "men should not ask for help"), AEE, caregiving burden, and depressive symptoms were measured in a cross-sectional survey.Results: Path analysis results supported the proposed mediation model with satisfactory fit indices (χ2(2) = 2.73, p = .26, CFI = 1.00; IFI = 1.00; RMSEA = 0.05). Specifically, male gender role norms and AEE were associated with higher caregiving burden and lower caregiving self-efficacy, which in turn were associated with more depressive symptoms. Bootstrapping results supported that both male gender role norms (β = 0.16; 95%CI = 0.09, 0.25) and AEE had significant indirect effects on depressive symptoms (β = 0.11; 95%CI = 0.04, 0.18) via caregiving burden and self-efficacy, indicating that caregiving-related perceptions could mediate between individual characteristics and depressive symptoms.Conclusions: Male gender role norms and AEE might affect depressive symptoms among husbands of Chinese BCP through caregiving-related perceptions. Future interventions that reduce those husbands' barriers to express emotions, appreciate their commitment to take good care of their spouses, enhance caregiving skills, and reduce caregiving burden may decrease their depressive symptoms. [ABSTRACT FROM AUTHOR]

A strong relationship exists between maternal depression and externalizing and internalizing problems in children, and caregiving burden might mediate this relationship. Yet, caregiving burden has rarely been tested as a mechanism underlying the relationship between maternal depression and child emotional and behavioral outcomes. Caregiving burden might be especially high in ethnic and racial minority mother-child dyads in low-income settings where there are more stressors in the environment and rates of maternal depression are elevated. A path analysis with 132 low-income urban mothers who mostly identified as racial and ethnic minorities confirmed our hypothesis that maternal depression has a direct effect on child externalizing and internalizing problems, and also an indirect effect through caregiving burden. We discuss implications of the findings with respect to research, practice, and policy with low-income, ethnic and racial minority families whose mothers have depression and care for children who exhibit externalizing and internalizing problems. [ABSTRACT FROM AUTHOR]

This study examined the links between maternal caregiving burden and maternal and child adjustment, and whether these links were mediated and moderated by maternal coping strategies. Cross-sectional data were collected from 173 Chinese families with kindergarten aged children with special needs in Hong Kong, China (mean age = 61.53 months; 72% of them were boys). Using questionnaires, mothers rated their caregiving burden, use of different coping strategies, and the adjustment of themselves and their children with special needs. Results demonstrated that maternal caregiving burden was negatively associated with maternal and child adjustment. Moreover, the associations of maternal caregiving burden with maternal life satisfaction and depression were partially mediated by maternal planful problem solving, positive reappraisal, and seeking emotional support, whereas the association between maternal caregiving burden and child prosocial behaviors was partially mediated by maternal positive reappraisal. There was little evidence, however, for the moderating effects of maternal coping strategies. Theoretically, our findings highlighted the role of parental coping in understanding the mechanism through which parental caregiving burden may affect the adjustment of both parents and their children. Practically, our findings pointed to the utility of supporting parents of children with special needs by reducing their caregiving burden and increasing their use of specific coping strategies. [ABSTRACT FROM AUTHOR]

Purpose: In resource-limited settings, family caregivers (FCGs) of adult cancer patients (ACPs) function in a context marred by high patient symptom burden, limited cancer care services and support and high caregiving burden. Despite this predicament, little is known about the quality of life (QoL) of FCGs in these settings. The study aimed to explore the determinants of QoL among FCGs of ACPs in Uganda.Methods: A cross-sectional design was used to collect data from 284 FCGs of ACPs. The study questionnaire was composed of the Katz Index, Family Pain Questionnaire, modified Chronic Pain Self-efficacy Scale and the Caregiver Quality of Life-Index-Cancer.Results: The mean age of FCGs was 36 ± 13.8 years. Most ACPs had stage 3 or 4 cancer (56%), severe pain (66.2%), reported moderate pain relief (51.1%) and were on chemotherapy (60.9%). The overall QoL of FCGs (70.2 ± 20.3) was moderate and 46.8% had low QoL. Most FCGs had high positive adaptation or financial concerns (55.3%) and low QoL in terms of burden (50.7%), disruptiveness (53.5%) and support (56.7%). The main determinants of overall QoL were FCGs' knowledge and self-eficacy for cancer pain management. The determinants of burden, disruptiveness, support and positive adaptations and financial concerns are reported.Conclusion: The key determinants of the QoL of FCGs were knowledge and self-efficacy for cancer pain management. In Uganda and similar settings, interventions to build FCGs capacity in cancer-related pain and other symptom management may help to enhance the QoL of FCGs and the ACPs. [ABSTRACT FROM AUTHOR]

The paper proposes a theoretical model of long-term care (LTC) issues in the context of elderly spouses and studies public LTC policy optimal in that case. In particular, it focuses on myopia about the negative health effects of caregiving burden and, relatedly, on the interaction between this burden and the two spouses' insurance coverage. Myopia results in an inefficiently high caregiving effort of the woman, who is the caregiver in the model. While under full information a linear caregiving tax can implement the first-best, unobservability of the woman's caregiving might require the use of LTC insurance subsidies. Interestingly, myopia about negative caregiving effects implies a subsidy on the man's but a tax on the woman's insurance premium. Paradoxically, insurance against the woman's LTC risk may be at odds with the protection of her health, which questions the popular tendency to emphasize more the importance of LTC insurance for women than for men. [ABSTRACT FROM AUTHOR]

This study examined the direct and indirect links, via the caregiving burden, between parents' perceptions about the severity of their child's illness and its interference in his or her life and the parents' quality of life (QoL). The participants were 277 parents of children with malignant cancer, divided into two clinical groups according to treatment status: 126 parents of children on-treatment and 151 parents of children off-treatment. Self-reported questionnaires assessed parents' perceptions of illness severity and interference in the child's life, caregiving burden and QoL. Pediatric oncologists provided information about diagnosis, treatment status and intensity. Parents of children on-treatment reported more negative perceptions about the illness (severity and interference), higher levels of caregiving burden and worse QoL, when compared to parents of children off-treatment. Furthermore, parents' perceptions about their child's illness (severity and interference) were negatively linked to parents' QoL through caregiving burden. Additionally, the link between caregiving burden and parents' QoL was moderated by child treatment status, with stronger associations found for parents of children on-treatment. This study's findings are discussed in terms of their relevant implications for intervention with families in the pediatric cancer context. [ABSTRACT FROM AUTHOR]

The aim of this study was to analyze the direct and indirect effects, via parents' behavioral disengagement coping, of caregiving burden on the quality of life (QL) of parents and their children with neurodevelopmental conditions. Self-completion questionnaires on the target variables were administered to a sample of 156 parents who had a child with a neurodevelopmental condition, namely epilepsy ( n = 65) and cerebral palsy ( n = 91). Structural equation modeling was used to test a mediation model and ascertain direct and indirect effects among study variables. Significant direct effects of caregiving burden on parents' and their children's QL were found. Additionally, caregiving burden had a significant indirect effect on parents' QL, via behavioral disengagement, but not on their children's QL. Finally, this model was found to be invariant across conditions and patients' age groups. Caregiving burden may be elected as a strategic intervention target to improve parent-child QL outcomes in neuropediatric settings. Parents should be encouraged to avoid or reduce behavioral disengagement coping in relation to their caregiving stress, and alternatively adopt active coping strategies that may positively affect their children's QL and impede or attenuate the deleterious effects of caregiving burden on their own QL. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to examine the prevalence of psychosocial variables associated with anxiety and depression among partners and caregivers of cancer survivors, compare prevalence with community norms and report differences across cancer diagnosis. Methods: A prospective survey of partners and caregivers was undertaken to assess anxiety and depression and potential psychosocial variables associated with these outcomes at 6 and 12 months post-survivor diagnosis ( N = 436). Results: Although the proportion of anxious participants decreased over time ( p = 0.01), the percentage of those depressed remained stable ( p = 0.68). Most participants who were depressed were also anxious. To a certain extent, the prevalence of anxiety and depression exceeded community norms and varied across cancer types. Partners and caregivers particularly vulnerable included those of lung, haematological or head and neck survivors. High use of avoidant coping and interference in regular activities were associated with both anxiety and depression across time points. Of the different types of support measured, only lower emotional/informational support was associated with anxiety and depression at 6 months, whereas lower positive social interaction was associated with depression at 12 months. Additional variables associated with anxiety and depression at 12 months included higher unmet needs and involvement in personal and medical tasks, respectively. Conclusions: Even at 12 months post-survivor diagnosis, almost a third of participants reported anxiety, a result partially predicted by high use of avoidant coping and interference in regular activities. Understanding variables associated with partners' and caregivers' anxiety and depression can lead to optimal referral to supportive care services and inform the tailoring of interventions to address those variables contributing to anxiety and depression at particular time points. [ABSTRACT FROM AUTHOR]