Academic literature on the topic 'Instrumental caregiving'

Caregiving capacities may be an important link between multi-problem circumstances and adverse child development. This study aims to assess caregiving capacities and their correlations in highly vulnerable, multi-problem families in Rotterdam, the Netherlands. Caregiving capacity (overall, emotional and instrumental) was prospectively assessed in 83 highly vulnerable women using video-observations of daily caregiving tasks, six week postpartum. Supporting data were collected at three time points: at inclusion, six weeks after inclusion and six weeks postpartum, and these included psychological symptoms, self-sufficiency, problematic life domains, home environment, income, depression, anxiety and stress. Pregnancy- and delivery-related information was collected from obstetric care professionals. Maternal caregiving scores averaged below adequate quality. Mothers living in an unsafe home environment (B = 0.62) and mothers with more problematic life domains (≤3 domains, B = 0.32) showed significantly higher instrumental caregiving capacities. Other variables were not related to caregiving capacities. Caregiving capacity in this highly vulnerable population was below adequate quality. However, in most cases there was no significant association between caregiving and the variables related to vulnerability. This means that a potential association between vulnerability and caregiving capacities might be driven by the interaction between several problems, rather than the type or number of problems.

AbstractBackground and ObjectiveA priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.MethodWe analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.ResultsOur analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3–63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.ConclusionsPoor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

Unpaid family caregivers might suffer losses in income as a result of care provision. Here we used data from the baseline survey of the China Health and Retirement Longitudinal Study to assess the relationship between hours of weekly caregiving provided to grandchildren/parents/parents-in-law and individual’s monthly employment income. Our study sample comprised 3718 middle-aged Chinese adults who were of working age (45–60 years). For women and men separately, we used a likelihood-based method to determine a caregiving threshold in a two-stage Heckman selection procedure. Instrumental variables were used to rule out the endogeneity of caregiving hours. Our analysis revealed a negative association between caregiving and income for women that depended on a caregiving threshold of 63 h per week. There was an absence of caregiving-income relationship among men. These results offer new insights into the opportunity costs of unpaid caregiving and support tailored policies to protect the financial well-being of female caregivers.

Abstract As the caregiver ratio declines, technology will play an increasingly important role in supporting formal and informal caregivers. This presentation will report on the particular effects that frontier technologies may have on various tasks associated with caregiving, including assisting with basic Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). The expert panel predicted that different technologies and new products will have varied effects on caregiving tasks, and that some tasks may be more impacted than others. Some of the key opportunities and barriers to integrating technologies into various tasks of caregiving will be discussed.

Abstract Due to the combined effects of longevity of aging parents, fewer children, and caregiving traditions, family members face multiple caregiving responsibilities in Japan. This study examined the emergence of compound caregiving--providing care to multiple adults-- and the relationship of caregiving status to burden, depression, and social support. Data were from the Fukui Longitudinal Caregiver Study, a survey of family caregivers to older Japanese adults who received long-term care services. We analyzed data from 2,025 caregivers whose mean age was 63 years old. Results showed that 9.5% of caregivers provided care for more than two care recipients. Compared to single caregivers, compound caregivers were more significantly burdened. Compound caregivers who reported higher instrumental and informational support from live-in family and higher emotional support from friends showed significantly lower caregiving burden. We discuss how traditional caregiving norms and demographic changes lead to new needs for family support in Japan’s aging society.

This study investigated the relationships among caregiving strain, coping, and mental health among caregivers of individuals with autism spectrum disorder (ASD) and the mediational moderation of caregiver needs. One hundred and ninety-three caregivers of individuals with ASD completed an online survey. Results showed that maladaptive coping behaviors were significant in mediating the relationship between strain and mental health. Professional service and emotional caregiving needs moderated the relationship between maladaptive coping and mental health at times of high caregiving strain, but not involvement, health information, and instrumental support needs. Results highlighted the negative effect of maladaptive coping, as well as professional service and emotional support needs were salient in moderating coping and mental health in times of high caregiving strain.

Unpaid family caregivers must consider the economic trade-off between caregiving and paid employment. Prior literature has suggested that labor force participation (LFP) declines with caregiving intensity, but no study has evaluated this relationship by accounting for the presence of both kinks and discontinuities. Here we used respondents of the China Health and Retirement Longitudinal Study baseline survey who were nonfarming, of working age (aged 45–60) and had a young grandchild and/or a parent/parent-in-law. For women and men separately, a caregiving threshold-adjusted probit model was used to assess the association between LFP and weekly unpaid caregiving hours. Instrumental variables were used to rule out the endogeneity of caregiving hours. Of the 3718 respondents in the analysis, LFP for men was significantly and inversely associated with caregiving that involved neither discontinuities nor kinks. For women, a kink was identified at the caregiving threshold of eight hrs/w such that before eight hours, each caregiving hour was associated with an increase of 0.0257 in the marginal probability of LFP, but each hour thereafter was associated with a reduction of 0.0014 in the marginal probability of LFP. These results have implications for interventions that simultaneously advance policies of health, social care and labor force.

Modernity has meant a cultural and social differentiation within the western society, which, according to Jürgen Habermas’ theory on communication, can be seen as a division between different forms of actions that takes place in different realms of the society. By combining Habermas’ notions of lifeworld and system with Arthur Frank’s analysis of stories as a way to experience illness, the article performs a cultural analysis of the meeting between families involved in caregiving in relation to Huntington’s disease and the Swedish welfare system. The ethnographic material shows how caregiving is given meaning through communicative action and illness stories, which are broken up by an instrumental legal discourse employed by the welfare system. This confrontation between communicative and instrumental action breeds alienation towards the state and the welfare system among the affected families. However, the families are able to empower themselves and confront the system through a hybrid form of action, which combines communicative and instrumental action. As such this hybridity, and the space that opens up on the basis of this hybridity, constitutes an important space within the modern society.

Caregivers of persons with multiple sclerosis (MS) engage in many caregiving tasks and spend considerable time on these activities with such caregiving being of immense social and economic value. However, the lack of empirically derived psychometrically sound instruments for measuring caregiving tasks has hampered progress in this field. This study aimed 1) to examine the dimensional and psychometric structure of the Caregiving Tasks in MS Scale (CTiMSS), and 2) to examine caregiver and care recipient correlates of caregiving tasks. Participants were 232 caregivers of persons with MS and their care recipients. Questionnaires were completed at Time 1 and 12 months later (Time 2). Factor analyses showed that the CTiMSS could be represented by a single dimension or four caregiving domains: Instrumental Care, Activities of Daily Living Care, Psycho-emotional Care, Social-practical Care. The CTiMSS factors were psychometrically sound and evidenced differential relations with most caregiver and care recipient characteristics and predicted changes in adjustment over 12 months. Findings delineate the key dimensions of MS caregiving and show the differential links between caregiving task domains and caregiver and care recipient characteristics. Results provide preliminary reliability and validity data on the first published measure of caregiving tasks in MS. Such an instrument is important for theory building, across study comparisons and the development of services. Multiple Sclerosis 2007; 13: 929—938. http://msj.sagepub.com

Abstract This study seeks to explore mental representations of caregiving, an area of attachment that has been the subject of relatively little research. The Caregiving Styles Questionnaire (CSQ) was developed as a cost effective and efficient alternative to lengthier caregiving interviews, and this study examines its internal and external validity. An initial item critique was used to examine underlying constructs of the measure. Exploratory factor analysis revealed a three factor structure, which was replicated in a subsequent EFA using a data set that differed primarily in the age of the target child. The three factors included (1) Relationship uncertainty, (2) Needy uncertainty, and (3) Rejecting representations of caregiving. Each of these scales had high reliability, and the results reflected existing caregiving representations that have been theorized in previous studies. These findings, particularly the generalizability of the measure across age groups, indicate that it would be worthwhile to continue refining the CSQ items in order to provide a valid measure of an understudied behavioral system.

Background: Caring for family members with dementia can be a long-term, burdensome task resulting in physical and emotional distress and impairment. Research has demonstrated significantly lower levels of selfefficacy among family caregivers of people with dementia (CGs) than caregivers of relatives with non-dementia diseases. Intervention studies have also suggested that the mental and physical health of dementia CGs could be improved through the enhancement of their self-efficacy. However, studies are limited in terms of the influences of caregiver self-efficacy on caregiver behaviour, subjective burden and health-related quality of life. Of particular note is that there are no studies on the applicability of caregiver self-efficacy in the social context of China. Objective: The purpose of this thesis was to undertake theoretical exploration using Bandura’s (1997) self-efficacy theory to 1) revise the Revised Caregiving Self-Efficacy Scale (C-RCSES) (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), and 2) explore determinants of caregiver self-efficacy and the role of caregiver self-efficacy and other conceptual constructs (including CGs’ socio-demographic characteristics, CRs’ impairment and CGs’ social support) in explaining and predicting caregiver behaviour, subjective burden and health-related quality of life among CGs in China. Methodology: Two studies were undertaken: a qualitative elicitation study with 10 CGs; and a cross-sectional survey with 196 CGs. In the first study, semi-structured interviews were conducted to explore caregiver behaviours and corresponding challenges for their performance. The findings of the study assisted in the development of the initial items and domains of the Chinese version of the Revised Caregiving Self-Efficacy Scale (C-RCSES). Following changes to items in the scale, the second study, a cross-sectional survey with 196 CGs was conducted to evaluate the psychometric properties of C-RCSES and to test a hypothesised self-efficacy model of family caregiving adapted from Bandura’s theory (1997). Results: 35 items were generated from the qualitative data. The content validity of the C-RCSES was assessed and ensured in Study One before being used for the cross-sectional survey. Eight items were removed and five subscales (caregiver self-efficacy for gathering information about treatment, symptoms and health care; obtaining support; responding to problematic behaviours; management of household, personal and medical care; and controlling upsetting thoughts about caregiving) were identified after principal component factor analysis on the cross-sectional survey data. The reliability of the scale is acceptable: the Cronbach’s alpha coefficients for the whole scale and for each subscale were all over .80; and the fourweek test-retest reliabilities for the whole scale and for each subscale ranged from .64 to .85. The concurrent, convergent and divergent validity were also acceptable. CGs reported moderate levels of caregiver self-efficacy. Furthermore, the level of self-efficacy for management of household, personal and medical care was relatively high in comparison to those of the other four domains of caregiver self-efficacy. Caregiver self-efficacy was also significantly influenced by CGs’ socio-demographic characteristics and the caregiving external factors (CR impairment and social support that CGs obtained). The level of caregiver behaviour that CGs reported was higher than that reported in other Chinese research. CGs’ socio-demographics significantly influenced caregiver behaviour, whereas caregiver self-efficacy did not influence caregiver behaviour. Regarding the two external factors, CGs who cared for highly impaired relatives reported high levels of caregiver behaviour, but social support did not influence caregiver behaviour. Regarding caregiver subjective burden and health-related quality of life, CGs reported moderate levels of subjective burden, and their level of healthrelated quality of life was significantly lower than that of the general population in China. The findings also indicated that CGs’ subjective burden and health-related quality of life were influenced by all major factors in the hypothesised model, including CGs’ socio-demographics, CRs’ impairment, social support that CGs obtained, caregiver self-efficacy and caregiver behaviour. Of these factors, caregiver self-efficacy and social support significantly improved their subjective burden and health-related quality of life; whereas caregiver behaviour and CRs’ impairment were detrimental to CGs, such as increasing subjective burden and worsening health-related quality of life. Conclusion: While requiring further exploration, the qualitative study was the first qualitative research conducted in China to provide an in-depth understanding of CGs’ caregiving experience, including their major caregiver behaviours and the corresponding challenges. Meanwhile, although the C-RCSES needs further psychometric testing, it is a useful tool for assessing caregiver self-efficacy in Chinese populations. Results of the qualitative and quantitative study provide useful information for future studies regarding the explanatory power of caregiver self-efficacy to caregiver behaviour, subjective burden and health-related quality of life. Additionally, integrated with Bandura’s theory, the findings from the quantitative study also suggested a further study exploring the role of outcome expectations in caregiver behaviour, subjective burden and healthrelated quality of life.

In this chapter we use case studies and men’s own words to show how each man’s caregiving style reflected his sense of personal identity. We also examine if and how the legacy of his culture and family prepared him for the role of caregiver. Witnessing and taking part in caregiving earlier in life supported men’s belief in the moral worth of both affective and instrumental acts of providing care. The self-worth individuals found in caregiving both reflected and paralleled the self-esteem men found in maintaining important personal values, such as compassion, loyalty, helpfulness to others, and religious or spiritual faith.

Psychological, existential, spiritual, and social issues cause much suffering and deserve extensive study to understand these concerns more fully and to intervene more effectively. Themes that abound include communication, coping, ethics, the family, caregiving, quality of life, death and dying, psychiatric disorders, suffering, and the many expressions of distress. Many study designs are possible to explore these themes, often with complementary quantitative and qualitative components. This chapter summarizes the psychometric properties of many of the instruments that are commonly employed in such studies and the computer-assisted software packages that assist qualitative analyses. The goal is to strengthen research design and optimize research outcomes to benefit the discipline.

Psychological, existential, spiritual, and social issues cause much suffering and deserve extensive study to understand these concerns more fully and to intervene more effectively. Themes that abound include communication, coping, ethics, the family, caregiving, quality of life, death and dying, psychiatric disorders, suffering, and the many expressions of distress. Many study designs are possible to explore these themes, often with complementary quantitative and qualitative components. This chapter summarizes the psychometric properties of many of the instruments that are commonly employed in such studies, and describes quantitative, qualitative, and mixed methods designs used. The goal is to strengthen research design and optimize research outcomes to benefit the discipline.

There is growing recognition that the majority of cancer caregivers will experience some element of burden as a result of the demands of caregiving. As such, identifying caregivers at risk for, and experiencing, burden is necessary to identify and implement appropriate support services to address this distress. Multiple instruments have been used to assess various domains of caregiver burden. Many of these were originally developed for caregivers of patients with neurological disorders, though more recent measures have been developed specifically to address the unique experience of burden among caregivers of patients with cancer. This chapter provides an overview of global and domain-specific measures most frequently used to evaluate the multiple dimensions of cancer caregiver burden and highlights tools intended to capture the unique experience of the burden of caregivers of pediatric patients with cancer.