Amount Of Caregiving Research Articles

Patient, Care Partner, and Physician Voices in Treatment Decision-Making for Multiple Myeloma.

Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role. We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate. Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%). Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.

Caregiving and all-cause mortality in postmenopausal women: Findings from the Women's Health Initiative.

Caregiving is commonly undertaken by older women. Research is mixed, however, about the impact of prolonged caregiving on their health, well-being, and mortality risk. Using a prospective study design, we examined the association of caregiving with mortality in a cohort of older women. Participants were 158,987 postmenopausal women aged 50-79 years at enrollment into the Women's Health Initiative (WHI) who provided information on current caregiving status and caregiving frequency at baseline (1993-1998) and follow-up (2004-2005). Mortality was ascertained from baseline through March of 2019. Cox regression with caregiving status defined as a time-varying exposure was used to estimate hazard ratios (HR) and 95% confidence intervals (CI) for mortality, adjusting for sociodemographic factors, smoking, and history of diabetes, hypertension, cardiovascular disease (CVD), and cancer. Stratified analyses explored whether age, race-ethnicity, depressive symptoms, frequency of caregiving, optimism, and living status modified the association between caregiver status and mortality. At baseline, 40.7% of women (mean age 63.3 years) self-identified as caregivers. During a mean 17.5-year follow-up, all-cause mortality (50,526 deaths) was 9% lower (multivariable-adjusted HR = 0.91, 95% CI: 0.89-0.93) in caregivers compared to non-caregivers. The inverse association between caregiving and all-cause mortality did not differ according to caregiving frequency or when stratified by age, race-ethnicity, depressive symptoms, optimism, or living status (interaction p > 0.05, all). Caregiving was inversely associated with CVD and cancer mortality. Among postmenopausal women residing across the United States, caregiving was associated with lower mortality. Studies detailing the type and amount of caregiving are needed to further determine its impact on older women.

Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

BackgroundWhile the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated.MethodsA total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied.ResultsAcross indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information.ConclusionThose caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future.Trial registrationThis article does not report the results of a health care intervention on human participants.

CAREGIVING ACROSS GENERATIONS AND CULTURES

Utilizing data from the California Health Interview Survey (CHIS) 2009, we examine caregiving activities among foreign born and US born Latinos, and US born Non-Hispanic whites ages 18 to 80 who are caring for an adult age 60 or older. Utilizing OLS regression, we first examine the relationship between race, ethnicity, nativity, and age and the amount of caregiving, types of caregiving, and use of long-term care (LTC) services among the population. Next we examine the health, mental health, and economic status of the three caregiver populations. The results find that middle aged and younger foreign born Latinos provide the greatest amount of care and also present with the greatest amount of economic challenges. US born middle- aged Latino caregivers also provide relatively high levels of care and also are more likely than other caregivers to experience health challenges including diabetes, obesity, depression and social isolation.

SUM THING TO TALK ABOUT: CAREGIVER-PRESCHOOLER MATH TALK IN LOW-INCOME FAMILIES FROM THE UNITED STATES

INTRODUCTION. The early home environment is critical for laying a strong numerical foundation for young children’s development. Participation in math-related informal learning activities in the home is associated with caregiver and child talk about math; however, it is unclear which activities promote different types of math talk. METHOD. We observed whether the math talk that 33 families from low-income backgrounds from the United States engaged in varied across three math-related activities – book reading, puzzle solving, and board game play. Math talk was coded into five categories: counting, numeral identification, cardinality, ordinal relations, and arithmetic. RESULTS. There was substantial variability in the amount of caregiver and child math talk. The amount and types of math talk caregivers and children engaged in varied by activity. Of the three activities, the board game elicited the most math talk. The most frequent type of talk during an activity corresponded to the specific numerical content embedded in each activity. DISCUSSION. Findings suggest that caregivers are responding to the play context when engaging in math-related informal learning activities. Understanding factors that influence math talk could inform the type of activities used in future home-based interventions aimed at reducing the gap in early mathematical understanding between children from lower- and higher-income backgrounds in the United States.

Work and family conflicts in employees with spinal cord injury and their caregiving partners

Study design:Cross-sectional, observational.Objectives:To investigate the association of conflicts between work and family life with indicators of health and to examine the antecedents of those conflicts in employees with spinal cord injury (SCI) and their caregiving partners.Setting:Community, Switzerland.Methods:Data from employed persons with SCI (n=79) and caregiving partners (n=93) who participated in the pro-WELL study were used. Logistic and tobit regressions were performed to assess the association of work–family and family–work conflicts with health indicators, namely mental health (36-item Short Form Health Survey (SF-36)), vitality (SF-36), well-being (WHOQoL BREF) and positive and negative affect (Positive and Negative Affect Scale short form (PANAS-S)). Own and partners’ engagement in productive activities and socioeconomic circumstances were evaluated as potential antecedents of work–family and family–work conflicts using logistic regression.Results:Work–family conflicts were related to reduced mental health (caregiving partners only), vitality and well-being. Family–work conflicts were linked to reduced mental health, vitality, well-being and positive affect in SCI and to reduced vitality in caregiving partners. Persons with lower income (SCI only) and lower subjective social position reported more conflicts than persons with higher income and higher subjective position. Higher workload increased work–family conflicts in caregiving partners and decreased family–work conflicts in SCI. Education, amount of caregiving, care-receiving and partners’ employment status were not associated with the occurrence of conflicts.Conclusion:The optimal balance between work and family life is important to promote mental health, vitality and well-being in employees with SCI and their caregiving partners. This is especially true in employees perceiving their social position as low and in caregivers with a high workload.

Informal Caregiving

Caregiving by family and local community has been part of every society and presumably included those affected by stroke, long before there was any knowledge of what comprised a stroke. In Western societies, changes in family structure and development of health and social services have increased caregiving by professionals, albeit still with a considerable amount of caregiving being delivered by family members. The rapid change in the pattern of illness globally has led to a dramatic fall in premature deaths from infectious diseases and a rapid rise in noncommunicable diseases, including stroke. This has now led to a major global public health problem with millions of people having a stroke each year, the majority of whom are in low- and middle-income countries (LMICs) that have yet to develop stroke services.1 A significant increase in disability-adjusted life years and deaths because of stroke was seen from 1990 to 2013, particularly in developing countries.2 There are ≈62 million stroke survivors across the world with a third of them with severe disabilities.3 Despite the huge burden, stroke care and rehabilitation services are unavailable to the vast majority of stroke survivors in LMICs. In this context, informal caregivers play a major role in post stroke care. In this review, we describe the current stroke services and rehabilitation in LMICs, role of informal caregiving in stroke rehabilitation, and description of new models of stroke rehabilitation in LMICs. We used Google scholar and PUBMED to search literature published between January 2000 and January 2016. The search terms used included stroke in Asia, stroke in India, stroke epidemiology, stroke burden, stroke care in developing countries, stroke and economic factors, rehabilitation and stroke, caregiving and stroke, caregiving burden and stroke, caregiving and socioeconomic status, and caregiving and demographic variables. Of 350 articles identified, 245 were …

Factores familiares, socioeconómicos y de comportamiento en salud oral asociados a la severidad de caries en escolares adolescentes

El objetivo del estudio fue determinar la prevalencia y severidad de caries, CPO-D y relación de los factores familiares, socioeconómicos y de comportamiento a nivel de salud oral en una población escolar adolescente; se encuestó y evaluó una muestra de 212 mujeres de entre 12 y 17 años con dentición permanente de la Institución Educativa Secundaria Nuestra Señora de las Mercedes en octubre del 2008, en Huánuco, Perú. Se encontró una prevalencia de caries de 85,8 %, un CPO–D de 4.0, según la severidad de caries, la clase leve fue mayor (36, 3%); fueron significativos los factores edad, número de personas por hogar, responsable del sustento familiar, frecuencia de cepillado, consumo de productos cariogénicos, atención odontológica, tipo de servicio odontológico. Se concluyó que la prevalencia de caries fue alta; el CPO–D es moderado y la severidad y prevalencia de caries se incrementa con el aumento de la edad, incremento del número de personas por hogar, el tipo y cantidad de responsables del sustento familiar, menor frecuencia de cepillado, aumento del consumo de productos cariogénicos, el no uso de la atención odontológica y con el no uso de los tipos servicios odontológicos.

Depressive symptoms among informal caregivers of older adults: insights from the Singapore Survey on Informal Caregiving

This paper determines care recipient and caregiver characteristics and caregiving dimensions - associated with depression among caregivers of older adults, using path analysis and assesses whether the identified path model differs between spousal and adult child caregivers. Data from 1,190 dyads comprising care recipients (community-dwelling adults aged ≥ 75 years with at least one activity of daily living (ADL) limitation) and caregivers (family member/friend most involved in providing care/ensuring provision of care to care recipient), who were interviewed through the Singapore Survey on Informal Caregiving (2010-2011), were used. Using path analysis, we assessed the direct and indirect associations between primary stressors (care recipient's ADL and instrumental ADL status, and memory and behavior problems), caregiver health status, receipt of assistance from a foreign domestic worker/maid, amount of caregiving, negative reaction to caregiving, caregiver's self-esteem, perceived emotional support, and caregiver depressive symptoms. Our analysis showed that primary stressors, receipt of assistance from a foreign domestic worker/maid, perceived emotional support, and caregiver health status were directly or indirectly associated with caregiver depressive symptoms, and this association was mediated by negative reaction to caregiving. Caregiver self-esteem mediated the relationship between perceived emotional support and negative reaction to caregiving only among adult child caregivers. The results provide insights into factors associated with depressive symptoms among spousal and adult child caregivers, and help identify targeted interventions for improving caregiver mood.

The Impact of Chronic Diseases

A chronic physical disease not only has direct consequences for the chronically ill person but can also distort the life of the healthy partner. This study of a representative sample of chronically ill persons and their partners in the Netherlands presents quantitative information on the proportion of partners who experience consequences in 4 distinguished areas (personal life strain, social relations, financial burden, and intrinsic rewards) and provides insight into the factors related to this. Data were derived from a subsample (N = 1,093) of participants in the Dutch Panel of Patients With Chronic Diseases. Linear regression analysis was used to determine the relative effect of caregiving and of disease characteristics to explain the variance in the 4 impact factors. The most prevailing consequences, experienced by more than half of the partners, were related to personal life strain and intrinsic rewards. An impact on social relations and financial situation was reported by 20% of the partners. The regression analyses showed that the time spent on caregiving is the main predictor for all 4 impact measures in this study. However, the findings also make clear that the impact on the partner's life does not arise entirely from the amount of caregiving. An independent effect of specific disease characteristics is observed in addition to the effect of caregiving; that is, we found that physical impairments in the patient are related to higher personal life strain and higher financial burden whereas social impairments are related to higher impact on all 4 factors. When the patient's disease is accompanied with fatigue, the partner reports higher impact on personal life, on social relations, and on intrinsic rewards, and pain significantly affects the partner's social relations. Partners of patients with cancer, musculoskeletal, or digestive disorders are more vulnerable for the consequences of the chronic disease. The impact on female partners is higher for all 4 impact factors. The findings make clear that living with a chronically ill person has an impact on the partner's life that goes beyond the consequences of caregiving.

Caregiving Outside of the Home: The Effects of Race on Depression

Objective . This research examines the conditions that determine whether Blacks experience lower or higher levels of depression while caregiving outside of the home, as compared to Whites. Some prior literature has found that African Americans report a lesser caregiver burden despite an increased likelihood that they will acquire this role, and decreased resources to do so. Others have found that African Americans experience the same caregiver burden and distress as Whites. Given these mixed findings, we use the stress process model to examine whether African American caregivers experience lower or higher levels of depression when they provide care outside of the home. Design . A sample of care workers who provide care to others outside of the home was drawn from the 1992–4 National Survey of Families and Households. The final sample included 275 (11%) Blacks, and 2,218 (89%) Whites (not of Hispanic origin). The primary statistical method for predicting differences in caregivers’ depressive symptomatology was OLS regression analysis with progressive adjustment. Results . We examined sociodemographics, family structure, resources, and stressors and found that African Americans, those with lower socioeconomic status, the unmarried, spending more weeks caregiving, having a physical impairment, and surprisingly receiving more help from parents are associated with higher depressive symptomatology. Stronger religious beliefs decreased depressive symptomatology for Blacks. The race effect was, in part, explained by family structure, amount of caregiving, and impairment of care worker. Conclusion . Contrary to prior literature, we found that Blacks are more depressed than White caregivers in large part because of lower socioeconomic status and greater stressors, and higher levels of physical impairment. Yet, strength in religious belief has a stress-buffering effect for African Americans. We suggest that policies that attempt to eliminate racial disparities in socioeconomic status and health could benefit these caregivers.

Father-child teaching interactions: The relationship to father involvement in caregiving

This study examined whether the amount of caregiving is related to the behavior of a father and his child during a structured teaching interaction. Healthy infants and toddlers (51 girls and 59 boys) and their fathers were observed in their homes. Fathers reported the frequency of involvement in caregiving during the previous week. Although fathers in higher and lower involvement groups were equally sensitive to the child's cues and responsive to the child's distress, fathers who were more involved in caregiving had higher scores in cognitive growth fostering as measured by the Nursing Child Assessment Teaching Scale. Copyright 2003, Elsevier Science (USA). All rights reserved.

The Stress of Caring for a Parent: Effects of the Elder's Impairment on an Employed, Adult Child

MARJORIE E. STARRELS Colorado State University BERIT INGERSOLL-DAYTON University of Michigan* DAVID W. DOWLER University of Michigan** MARGARET B. NEAL Portland State University*** This study examines direct and indirect effects of an elder's impairment on the caregiving stress of employed sons and daughters. Using path analysis and decomposition of variance, it examines data provided by 1,585 employees who care for a parent or parent-in-law aged 60 or older. The direct effect of impairment on stress is stronger for cognitive-behavioral problems than it is for limitations in activities of daily living. Also, there are indirect effects of impairment on caregiver stress via the amount of caregiving. Significant effects also were found for time off from work to help the elder and for the elder's assistance to caregivers. Key Words: caregiver stress, elder care, employed caregivers, elder impairment, parent-child relations, work. Adult children's provision of care to their aging parents is becoming an increasingly important issue as we approach the 21st century. Demographic shifts and cultural norms (e.g., the aging of the population, fewer children per family and childbearing at later ages, greater geographical dispersion of families, and more participation in and commitment to the labor force among middle-aged women) have resulted in compelling dilemmas involving the care of parents. Gorey, Rice, and Brice (1992) reviewed 17 studies that addressed the prevalence of elder-care responsibilities among employees. On average, from one fifth to one quarter of employed family members reported providing care to an older dependent. After implementing statistical controls to adjust for response rates and variability in operational definitions of elder care, Gorey and colleagues estimated that from 7% to 12% of employees have elder-care responsibilities. In addition, Stone, Cafferta, and Sangl (1987) found that, based on data from the Informal Caregivers' Survey, 31% of all caregivers were employed (44% of daughters and 55% of sons). For employed adults, conflicts among jobs, parent care, and other family responsibilities can be stressful. In view of these challenges, it is important to analyze more closely the factors that inhibit or exacerbate the stress often experienced by employed adult children due to their caregiving role. Although there is a sizeable literature addressing the nature and extent of stress outcomes for caregivers of elders (see Walker, Pratt, & Eddy, 1995), there has been limited, albeit growing, attention to the subpopulation of employed family members who provide care to an older person. This group is significant because of its increasing size, as well as the unique role conflicts and constraints that may be experienced by its members. Indeed, employment is generally considered to increase caregivers' vulnerability to caregiver burden, physical fatigue, depression, and other indicators of physical and emotional stress (Brody, 1990; Neal, Chapman, IngersollDayton, & Emlen, 1993; Steuve & O'Donnell, 1989). Building on previous research, this study focuses on the relationship between an elder's impairment and caregiver stress. Previous studies are inconsistent with regard to the effect of the elder's level of impairment on caregiver stress (Dura, Haywood-Niles, & Kiecolt-Glaser, 1990; Miller,1990a, 1990b; Pearson, Verma, & Nellert, 1988). Furthermore, most studies do not consider the indirect effects, as well as direct effects, of the elder's impairment. Therefore, our study contributes to the literature by examining the direct and indirect effects of elder impairment on the stress outcomes of employed daughters and sons who are providing care to their parents and parents-in-law. Previous studies have distinguished between two kinds of impairment: physical impairment and cognitive-behavioral problems. Physical impairment typically involves difficulty in accomplishing activities of daily living or instrumental activities of daily living-difficulties that result from limitations in ambulatory capacity and other basic physical functioning. …