Caregiving stress and maternal mental health during the COVID-19 pandemic.

It has now been extensively documented that parental mental health has deteriorated since the beginning of the COVID-19 pandemic. Although pandemic-related stress has been widespread, parents faced the unique challenge of navigating remote schooling. Parental oversight of children's education, loss of access to school supportive resources, and the challenges of remote learning may have been most problematic for parents of children with or at elevated risk for mental health difficulties. In the current study, we examined interactive effects of parent-reported pandemic-related caregiving stress and child internalizing and externalizing problems on parental depressive symptoms in a community-based cohort (N = 115) in the Northeast of the United States. Results indicated that parents experiencing higher levels of pandemic-related caregiving stress whose children exhibited elevated externalizing behaviors reported heightened levels of depressive symptoms. Greater child internalizing problems were associated with higher parental depressive symptoms independent of caregiving stress. These findings point to conditions that might heighten risk for parent mental health challenges in the context of ongoing remote or hybrid learning and pandemic-associated restrictions. Further, the findings point to conditions and characteristics that may be screened to identify and intervene with vulnerable families to mitigate mental health problems.

Predictors of the quality of the relationship between informal caregiver and care recipient in informal caregiving of older people: presentation and evaluation of a new item.

BACKGROUND: An important factor that has not been directly addressed very often in caregiver (CG) counseling to date is the quality of the relationship between the CG and the care recipient (CR). One reason is the lack of availability of a suitable assessment tool that is not strongly influenced by social desirability. Here, we present and evaluate a new item for the assessment of relationship quality (RQ) in the context of informal caregiving of older people. METHODS: N = 962 informal caregivers of older people participated. Our item assessed RQ by providing three answer categories (positive, neutral, and negative) that were presented through the use of smiley faces. For evaluation, and to avoid bias due to social desirability, the neutral and negative categories were combined. We calculated a stepwise binary logistic regression. RESULTS: Expected associations with the variables care burden, perceived positive aspects, and care motivation were found (all p values < 0.01). An exploratory analysis revealed that additional predictors of RQ consisted of the CR's age as well as whether the CR's diagnosis was dementia, CG's amount of dysfunctional coping, and whether the CG was caring for more than one CR. CONCLUSIONS: We conclude that our item is well-suited for the assessment of RQ in the context of informal caregiving of older people. Because it uses language-free answer categories by means of smiley faces, our item can be applied easily. Bias due to social desirability can be minimized by dichotomization (i.e., combining the negative and neural answer categories). In future research, our tool should be evaluated in other contexts.

Trait resilience as a moderator between personality dysfunction and caregiving stress in caregivers of children and adults with developmental disabilities.

Background: Long-term care of a relative with a disability is associated with negative consequences on the caregiver's mental health. Therefore, investigating how some personality traits, such as resilience, protect caregivers with dysfunctional personality traits from caregiving stress is necessary. This study examines the moderating role of resilience in the relationship between caregiver's personality dysfunction and care stress. Methods: A total of 224 family caregivers of children and adults with developmental disabilities participated in this cross-sectional research. They completed self-report measures of resilience, personality dysfunction, and care stress. Results: The results show that medium and high levels of resilience protect familial caregivers from the adverse effects of personality dysfunction on stress. The relationship is maintained for three of the five dysfunctional personality traits (antagonism, disinhibition, and psychoticism). Conclusions: From a theoretical point of view, the results show the contribution of the dimensional personality model to the study of caregiving stress. From a practical standpoint, the results can be used to optimise the resilience of familial caregivers, providing them with tools to take better care of their relatives.

Caregiving Stress Experienced by Parents of Adult Children with Intellectual Disabilities During COVID-19 in Korea.

Many of community supports and resources were shattered in the COVID-19 pandemic, leaving parents to navigate caring for their adult child with intellectual disabilities with little support. This study explored caregiving stress experienced by parents of adult children with intellectual disabilities during the COVID-19 pandemic in Korea. In-depth interviews were conducted with 19 parents of an adult child with intellectual disabilities. Thematic analysis yielded two themes: caregiving burden and deteriorating health. Parents bore the brunt of the caregiving burden, spending much of their time helping their adult child with daily activities and managing their challenging behaviors, leaving the caregivers struggling physically and mentally. The heightened caregiver burden and associated deteriorating health among these parents raise serious concerns, indicating a need for immediate support to alleviate these issues and help parents navigate caring for their adult child with intellectual disabilities during the COVID-19 pandemic.

Care stressors and perceived stress among family caregivers of Chinese older adults with disabilities: The mediation effect of resilience.

OBJECTIVES: Guided by the Stress Process Model, this study examined the mediating effect of resilience on the relationship between care stressors and perceived caregiving stress. METHODS: Data were based on 234 older adults with disabilities and their caregivers from 6 urban districts and 6 rural counties from Jinan, China. Descriptive analysis, analysis of variance, ordinary least squares regression, and mediation analysis were performed. RESULTS: Perceived stress among family caregivers of Chinese older adults with disabilities was affected by the physical and mental health of both themselves and the care recipients, as well as care intensity and financial difficulties. Resilience played a partial mediating role in the associations among three stressors (i.e. older adults' disability levels, number of chronic diseases, and caregivers' self-reported mental) and perceived caregiving stress. CONCLUSIONS: Enhanced resilience aids caregivers' adaptation to their roles, suggesting the need for societal, spiritual, emotional, and behavioral resilience training.

The Role of Social Isolation on Mediating Depression and Anxiety among Primary Family Caregivers of Older Adults: A Two-Wave Mediation Analysis.

BACKGROUND: Primary family caregivers of older people with chronic care conditions are highly vulnerable to social isolation and psychological strains such as depression and anxiety due to their demanding responsibilities. This study examines how social isolation mediates the relationship between caregiving stress and mental health symptoms of primary family caregivers. METHODS: The analytic sample included 881 primary caregivers of older adults from the 2015 and 2017 National Study of Caregiving (NSOC). Social isolation was measured using a composite structure that includes objective social disconnectedness and subjective loneliness. Two-wave mediation models were estimated to examine longitudinally if social isolation mediated the relationship between caregiving stress (subjective & objective stress) and mental health symptoms (depression & anxiety) of primary caregivers. RESULTS: The study findings indicate that both subjective (ß = 0.32, p < 0.001) and objective stress (ß = 0.21, p = 0.003) have direct effects on depression among primary caregivers. Social isolation was found to only mediate the relationship between objective stress and depression (ß = 0.18, p < 0.001). In contrast, no significant direct and indirect pathway was found in the anxiety model. CONCLUSIONS: The study demonstrates the internal mechanism where objective strains of caregiving make family caregivers socially isolated, which in turn leads to increased symptoms of depression. Future interventions and practices aimed at improving the psychological well-being of family caregivers should prioritize strategies aimed at increasing social engagement, particularly for those with heavy caregiver burdens.

Impact of older adults' oral health on caregiving stress of their family caregivers in the United States: The mediating effect of functional ability.

Extensive studies have explored the factors affecting caregiving stress, but how oral health of care recipients (CRs) associates with caregiving stress and the mechanism behind it are not well-known. Guided by Stress Process Theory, this study addressed such research gaps. Caregiver services dataset came from the 13th National Survey of Older Americans Act Participants in the United States (N = 1289). Caregiving stress included physical, emotional, and financial stress. The oral health of CRs was self-rated by a single item. The functional ability of CRs was assessed by activities of daily living (ADLs) and instrumental activities of daily living (IADLs). PROCESS 3.4 for SPSS 26.0 was used to conduct the mediation analyses. Results from the study showed that caregivers reported slightly high levels of physical (M = 3.06, SD = 1.33, Range = 1-5), emotional (M = 3.43, SD = 1.28, Range = 1-5), and financial (M = 2.83, SD = 1.43, Range = 1-5) stress. The results from hierarchical linear regression revealed that poor oral health of CRs was significantly associated with higher levels of physical (B = 0.11, p < 0.001), emotional (B = 0.09, p < 0.01), and financial (B = 0.12, p < 0.001) stress, respectively. The functional ability of CRs mediated such relationships between the oral health of CRs and the caregiving stress of their family caregivers. Findings from this study enrich our theoretical and practical understanding of caregiving stress in aged care and offer programs and policy implications of oral and physical healthcare for community-dwelling older adults.

Caregiving stress among family caregivers of older adults living with disabilities in China.

OBJECTIVES: This study aimed to describe caregiving stress among family caregivers of Chinese older adults living with disabilities, and explore how care intensity, financial expenses, and care difficulties are associated with caregiving stress. METHODS: Data of 220 older adult-caregiver dyads were collected from 6 urban districts and 6 rural counties from Shandong province, China. Descriptive analyses and multivariate ordinal logistic regression analyses were performed. RESULTS: Family caregivers providing nine or more hours of care per day reported higher caregiving stress than those who provided fewer than nine hours. Caregivers who experienced insufficient care abilities, economic hardships, or time conflicts were more likely to report caregiving stress. Financial support provided to older adults was not associated with caregiving stress. CONCLUSIONS: Family caregivers of Chinese older adults with disabilities are experiencing excessive caregiving stress. Social support groups and China's long-term care insurance system should be promoted to better assist family caregivers.

Caregiving stress and burden associated with cardiometabolic risk in family caregivers of individuals with cancer.

Chronic stress is a well-established risk factor for cardiometabolic disease. Caregiving for individuals with cancer is perceived as a chronic stressor yet research on the risk for cardiometabolic disease in this population, opposed to the elderly and those with Alzheimer's disease, is limited. Additionally, few studies have explored the early physiological changes that occur in family caregivers suggesting an elevated risk for illness. This cross-sectional study was designed to examine levels of cardiometabolic risk biomarkers and their correlates in caregivers of patients with colorectal cancer. Caregivers completed questionnaires that measure exposures to stress and vulnerability factors, psychological distress, and health habits as potential correlates. Traditional lipid and nontraditional lipoprotein particle biomarkers (e.g. concentration and size for all lipoprotein classes) were assayed from blood serum. Caregivers (N = 83, mean age = 49.8, 73% female) displayed levels of cardiometabolic biomarkers that suggest an elevated risk for cardiometabolic disease. Caregivers who were Hispanic, married, highly educated, employed, reported more hours spent caregiving daily, experienced higher caregiver burden associated with the lack of family support and impact on schedule, and psychological distress, demonstrated an elevated risk for cardiometabolic disease; primarily determined by nontraditional lipid biomarkers - large TRL-P, LDL-P, small HDL-P, large HDL-P, TRL-Z, LDL-Z and HDL-Z. These findings suggest that traditional lipid biomarkers may not be robust enough to detect early physiological changes associated with cardiometabolic disease risk in family caregivers. Moreover, findings reiterate the importance of assessing caregiver burden and providing evidence-based interventions to manage caregiving stress with the potential to improve caregivers' cardiometabolic health.

Delivering a holistic hospital-to-home framework to support family caregivers of persons with dementia: Protocol for a feasibility study.

AIM: To evaluate the feasibility of the Carer Matters holistic hospital-to-home framework for family caregivers of people with dementia. BACKGROUND: Family caregivers of persons with dementia face a unique blend of stressors, from behavioural management to navigating the healthcare system. It is important to provide support and assistance to help caregivers cope to enable a sustained capacity for caregiving. This led to our establishment of Carer Matters, the first holistic caregiver-centric hospital-to-home framework of support for caregivers of persons with dementia in Singapore. METHODS: A multimethod study design will be used. We will assess the programme's feasibility and effectiveness using a Theory of Change approach, with findings synthesized using the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework. Our study will involve six inpatient wards of a 1700-bedded acute care hospital over 12 months. Qualitative data will be obtained from interviews of stakeholders-caregivers, healthcare professionals, hospital leaders and community leaders. Quantitative data will be collected from programme logs, surveys and evaluation forms that capture self-reported levels of mastery, anxiety, burden, and depression. Funding has been approved by the Geriatric Education and Research Institute (GERI) Intramural Project Grant (GERI Ref: GERI1626) on May 2020 for this study (£103,659), to be conducted from December 2020 to June 2022. DISCUSSION: The stresses faced by caregivers of persons with dementia are wide and complex, necessitating a multi-faceted caregiver-oriented solution to provide sustained support, empower better management and continued capacity to care. Our study would provide insights on the feasibility and effectiveness of a caregiver-centric support programme stretching from the hospital into the community. IMPACT: These findings will provide a blueprint on how to implement a hospital-to-home patient-caregiver framework and provide policymakers, clinicians, and advocacy groups with critical insights on the potential patient-caregiver-healthcare system outcomes that can be derived.

Association of cancer caregiver stress and negative attribution style with depressive symptoms and cortisol: a cross-sectional study.

PURPOSE: We examined the effect of informal cancer caregiver stress and negative attribution style (NAS) on depressive symptoms and salivary cortisol. METHOD: The sample came from a hospital bone marrow unit and caregiver support organizations and included 60 informal cancer caregivers (51.7% partners) of individuals with cancer (provided care for a median of 27.5 h per week for 12 months) and 46 non-caregiver participants. In this cross-sectional study, participants completed questionnaires assessing NAS and depressive symptoms and provided saliva samples to measure cortisol. RESULTS: Linear regressions demonstrated that cancer caregiver stress (p = 0.001) and the cancer caregiver stress by NAS interaction (p = 0.017), but not NAS alone (p = 0.152), predicted depressive symptoms. Caregivers independent of their NAS and non-caregivers high in NAS reported high depression while non-caregivers low in NAS reported low depression. Neither cancer caregiver stress (p = 0.920) nor NAS alone (p = 0.114), but their interaction, predicted cortisol (p = 0.036). Higher NAS was associated with a higher cortisol in both groups while non-caregivers had higher cortisol than caregivers. CONCLUSIONS: If the findings can be replicated, consideration of NAS in existing interventions to support informal cancer caregivers in managing chronic stress appears warranted.

The impact of dementia daycare service cessation due to COVID-19 pandemic.

OBJECTIVES: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. METHODS: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers' stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. RESULTS: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. CONCLUSIONS: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.

Religious coping and psychological well-being in Latino Alzheimer's caregivers.

OBJECTIVES: Prior research has demonstrated the benefits of religion on caregiver well-being; however, less research exists on the processes underlying this relationship, particularly in Latino Alzheimer's disease (AD) families. This study's aim was therefore to explore the direct and indirect influences of positive religious coping (RC-P) and negative religious coping (RC-N) on caregivers' experiences of depression and anxiety. METHODS: The data are from the Circulo de Cuidado Study baseline interviews; participant eligibility criteria were that the person identifies as being Latino, providing at least 5 h of care weekly, and their relative has an AD diagnosis and neuropsychiatric symptoms. In person at-home interviews were conducted in Spanish with 67 caregivers. Religious coping was assessed with the Brief RCOPE; depression and anxiety were measured with the Center for Epidemiological Studies Depression Scale-Spanish version and State Anxiety Inventory. Multivariate regression analyses, controlling for caregiving stressors, were used to test our core hypotheses. RESULTS: As hypothesized, RC-N had significant direct effect on depression (p < 0.001) and anxiety (p < 0.001) as well as partially mediated the relationship between caregiver subjective stressor and depression (p < 0.01) and anxiety (p < 0.01). However, contrary to our hypothesis, RC-P did not have a direct or indirect effects on psychological well-being. CONCLUSIONS: Our findings are consistent with other studies linking RC-N to poorer caregiver outcomes. Caregivers who questioned God's power, perceived God punishing them, or felt abandoned by God reported greater levels of depression and anxiety. The results suggest that caregivers experiencing religious distress may feel overwhelmed and view a more hopeless future.

An Evaluation of Self-Care and Caregiving Training Curriculum Content for Chinese Immigrant Caregivers: A Participatory Design Approach.

Immigrant caregivers face unique difficulties in self-care and caregiving practices in the United States. Our aim was to conduct an evaluation of the content of a training curriculum app designed for Chinese immigrant caregivers based on the Body-Mind-Spirit model. An app prototype was developed, and a sample content was examined by prospective users accessing it on their smartphones. Using a participatory design approach, 22 in-depth interviews were conducted with Chinese immigrant caregivers in Los Angeles in 2019, and feedback for spirituality content was sought from an independent expert. Caregivers provided feedback for three self-care categories-body, mind, and community resources-and two caregiving content categories-knowledge and skills, and community resources. From this feedback, five areas for designing training curriculum content emerged: caregiving stress, lifestyle and health behavior change, access to community resources, death education and end-of-life care, and spiritual care.

Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood.

This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.

Longitudinal changes in well-being of parents of individuals with developmental or mental health problems.

RATIONALE: A large body of work demonstrates the impact of caregiving burden on the well-being of parents of individuals with developmental conditions or mental health problems. However, a relative dearth of research examines this impact longitudinally into parents' older age. OBJECTIVE: The current study examines (1) longitudinal changes in the effect of having a child with a developmental or mental health problem on parental negative affect, psychological well-being, and somatic symptoms, (2) age and gender moderations on these effects, and (3) the unique impact of factors related to the child's condition. METHOD: This study employs hierarchical linear regression models to examine longitudinal survey data from midlife adults (N = 1,101) from two waves of the National Study of Midlife in the United States (MIDUS). RESULTS: Models revealed some evidence for age attenuation of the impact of caregiving stress. Parents of children with developmental problems still had higher negative affect, poorer psychological well-being, and more somatic symptoms on average than parents in a comparison sample, whereas parents of children with mental health problems only showed evidence of higher negative affect compared to this sample. Within-group analyses also revealed differences between each parenting group into later adulthood. CONCLUSIONS: Parents of individuals with developmental or mental health problems may be at risk for poorer well-being late in life. Yet, age and gender differences as well as diagnostic group differences nuance these findings.

Caregiver Stress, Coping Strategies, and Support Needs of Mothers Caring for their Children Who Are Undergoing Active Cancer Treatments.

The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.

Relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer: implications for nursing practice.

AIM: This study was conducted to investigate the relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer at a University Teaching Hospital in Jeddah city, Saudi Arabia. METHODS: A cross-sectional correlational study was carried out with a convenience sample of 160 family caregivers of adult patients with cancer. Data were collected using a self-administered questionnaire including the Modified Caregiver Strain Index, the DUKE Health Profile and sociodemographic items. The data were analysed using the Statistical Package for the Social Sciences (SPSS). Descriptive and inferential statistics and correlations were performed. RESULTS: Participants experienced a certain level of caregiving stress (M = 9.01, SD = 5.645). Many factors were found to be correlated to higher caregiving stress in this study. Caregiving stress showed significant moderate negative correlations with mental and physical health (p < 0.01). Statistically significant differences were found between age, gender, nationality, education, monthly income, and caregiving stress or DUKE Health Profile scores (p < 0.05). CONCLUSIONS: Caregiving stress affects family caregivers' mental and physical health. Such stress can disrupt the caregiving performance of family caregivers. Discovering the causes of caregiving stress among the family caregivers of adult patients with cancer may help to determine the main elements affecting patient care and can assist oncology nurses in providing support and services to caregivers. Educational strategies/intervention programs in the hospitals may be required to reduce caregiving stress levels and improve the health and well-being of family caregivers of adult patients with cancer.

Children's psychosocial functioning and parents' quality of life in paediatric short stature: The mediating role of caregiving stress.

OBJECTIVES: On the basis of the multidimensional model of the caregiving process, this study aimed (a) to compare the levels of quality of life (QoL) and psychological problems of children with short stature and the levels of caregiving stress and QoL of their parents, between diagnostic, treatment, and current height deviation groups, and (b) to examine the direct and indirect links, via caregiving stress, between children's psychosocial functioning and their parents' QoL. METHOD: The sample was collected in 5 European countries and comprised 238 dyads of 8- to 18-year-old children and adolescents with a clinical diagnosis of growth hormone deficiency or idiopathic short stature and one of their parents. The children completed self-report measures of height-related QoL (Quality of Life in Short Stature Youth Core Module) and psychological problems (Strengths and Difficulties Questionnaire); the parents reported on their own QoL (EUROHIS-QOL-8 Index) and caregiving stress (Quality of Life in Short Stature Youth Effects on Parents subscale). RESULTS: Children who were treated and who achieved normal height reported better QoL compared to those untreated and with current short stature. Parents of children with idiopathic short stature and current short stature presented greater caregiving stress than parents of children with growth hormone deficiency and achieved normal height. Children's better psychosocial functioning was indirectly associated with parents' better QoL, via less caregiving stress, and these links were invariant across diagnoses, treatment status, and current height deviation. CONCLUSIONS: These results suggest that, along with growth hormone treatments, multidisciplinary interventions in paediatric endocrinology should be family-centred, by targeting both the children's psychosocial functioning and the parents' stress, in order to improve individual and family adaptation.

"Her Life Rests on Your Shoulders": Doing Worry as Emotion Work in the Care of Children With Diabetes.

Research on parents' caregiving experiences in the context of diabetes management have consistently shown that parents experience high levels of pediatric parenting stress, anxiety, depression, and general worry. However, how parents understand their worry is largely unexplored and little attention is paid to the work parents are already actively doing to manage their worry. Adopting Arlie Hochschild's concept of "emotion work" and Dorothy Smith's concept of "work," this article examines how parents engage in the emotion work of doing worry. Drawing on the analysis of transcribed data from interviews with seven parents caring for children with diabetes, I show how parents expressed worry as an emotion they experience as well as an embodied way of knowing the presence of potential threats to their child's health. Thus, doing worry is an essential aspect of work done by parents to ensure the safety and well-being of their children with diabetes.