Journal articles on the topic 'Instrumental caregiving'
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van der Hulst, Marije, Rianne Kok, Peter Prinzie, Eric A. P. Steegers, and Loes C. M. Bertens. "Early Maternal Caregiving Capacities in Highly Vulnerable, Multi-Problem Families." International Journal of Environmental Research and Public Health 19, no. 23 (December 2, 2022): 16130. http://dx.doi.org/10.3390/ijerph192316130.
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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.
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Kent, Erin E., Michelle A. Mollica, J. Nicholas Dionne-Odom, Rebecca A. Ferrer, Roxanne E. Jensen, Katherine A. Ornstein, and Ashley Wilder Smith. "Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study." Palliative and Supportive Care 18, no. 5 (February 24, 2020): 519–27. http://dx.doi.org/10.1017/s1478951520000036.
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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.
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Chai, Huamin, Rui Fu, and Peter C. Coyte. "How Do Middle-Aged Chinese Men and Women Balance Caregiving and Employment Income?" Healthcare 9, no. 4 (April 3, 2021): 415. http://dx.doi.org/10.3390/healthcare9040415.
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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.
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Lee, Chaiwoo, John Rudnik, and Joseph Coughlin. "Using Technologies to Address Caregiving Challenges." Innovation in Aging 4, Supplement_1 (December 1, 2020): 831. http://dx.doi.org/10.1093/geroni/igaa057.3040.
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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.
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Wakui, Tomoko, Tomoko Wakui, Emily M. Agree, and Ichiro Kai. "A NEW FEATURE OF JAPANESE CAREGIVING? COMPOUND CAREGIVING OF OLDER ADULTS IN AN AGING SOCIETY WITH FEWER CHILDREN." Innovation in Aging 3, Supplement_1 (November 2019): S603. http://dx.doi.org/10.1093/geroni/igz038.2243.
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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.
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Lee, Gloria K., Katarina Krizova, and Carolyn M. Shivers. "Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis." Autism 23, no. 8 (March 20, 2019): 1936–47. http://dx.doi.org/10.1177/1362361319833678.
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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.
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Chai, Huamin, Rui Fu, and Peter C. Coyte. "Unpaid Caregiving and Labor Force Participation among Chinese Middle-Aged Adults." International Journal of Environmental Research and Public Health 18, no. 2 (January 13, 2021): 641. http://dx.doi.org/10.3390/ijerph18020641.
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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.
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Bibbo, J., and C. Proulx. "INSTRUMENTAL AND EMOTIONAL EFFECTS OF CARE RECIPIENTS’ COMPANION ANIMALS ON CAREGIVING." Innovation in Aging 1, suppl_1 (June 30, 2017): 318. http://dx.doi.org/10.1093/geroni/igx004.1174.
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Hagen, Niclas, Susanne Lundin, Tom O´Dell, and Åsa Petersén. "For Better or for Worse: Lifeworld, System and Family Caregiving for a Chronic Genetic Disease." Culture Unbound 4, no. 3 (November 9, 2012): 537–57. http://dx.doi.org/10.3384/cu.2000.1525.124537.
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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.
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Pakenham, K. I. "The nature of caregiving in multiple sclerosis: development of the caregiving tasks in multiple sclerosis scale." Multiple Sclerosis Journal 13, no. 7 (August 2007): 929–38. http://dx.doi.org/10.1177/1352458507076973.
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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
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MaloneBeach, Eileen E., and Steven H. Zarit. "Dimensions of Social Support and Social Conflict as Predictors of Caregiver Depression." International Psychogeriatrics 7, no. 1 (March 1995): 25–38. http://dx.doi.org/10.1017/s1041610295001827.
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The goal of this research was to examine the relationship of family social support and social conflict to stressors and depression. Fifty-seven caregiving women were interviewed regarding caregiving stressors, social support, and social conflict. Three dimensions of social support and social conflict were assessed: instrumental, informational, and affective. The findings supported the importance of distinguishing between social support and social conflict, and among the three dimensions of support and conflict. Respondents reported higher levels of support than of conflict, but consistent with earlier research, social support was not related as strongly to outcomes as social conflict was. Although instrumental support was related significantly to depression, informational and emotional support was not. Social conflict, however, was significantly related to depression. Both emotional conflict and informational conflict were significant predictors of depression. Implications for future research and interventions are discussed.
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Huang, Jing, Pui Hing Chau, Edmond Pui Hang Choi, Bei Wu, and Vivian Lou. "The Patterns of Caregiving Activities for Family Caregivers of Older Adults: A Latent Class Analysis." Innovation in Aging 4, Supplement_1 (December 1, 2020): 355. http://dx.doi.org/10.1093/geroni/igaa057.1141.
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Abstract The purposes of this study were to identify the patterns of caregiving activities among family caregivers in Hong Kong and to examine their associations with characteristic factors and caregiver burden. The data was from the cross-sectional survey on the profiles of family caregivers of older adults in Hong Kong. 932 family caregivers were classified into different classes by using the Latent class analysis (LCA) according to their engagements in the 17 daily caregiving activities: 6 activities of daily living (ADLs), 8 instrumental activities of daily living activities (IADLs), emotional support, decision-making, and financial support. Five classes were revealed and labeled “Total All-round Caregiving” (Class I: 19.5%), “Partial All-round Caregiving” (Class II: 8.2%), “ADLs Free Caregiving” (Class III: 23.8%), “ADLs & Partial IADLs Free Caregiving” (Class IV: 32.5%), “Financial Caregiving” (Class V: 16.0%), respectively. Results from multinomial logistic regression found that the following factors were associated with the class membership: care recipients’ age, medical diagnoses, and caregivers’ gender, job status, marital status, self-rated economic status, living with care recipients, and caring for ≥40 hours per week. Findings from multiple linear regression showed caregivers with different patterns of caregiving activities reported different levels of caregiver burden. Caregivers in Class I have been found with the highest caregiver burden. This is the first study that has applied LCA to capture the patterns of caregiving activities among family caregivers. Identification of caregiving activity patterns and examination of their characteristics and caregiver burden can help healthcare providers to shift to prioritized and targeted caregiver support.
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Tarter, Robin, Dena Hassouneh, Allison Lindauer, and Nathan Dieckmann. "CHOICE MODERATES RELATIONSHIPS BETWEEN LEVEL AND DURATION OF CARE AND THE HEALTH IMPACT OF CARING FOR AN OLDER PARENT." Innovation in Aging 3, Supplement_1 (November 2019): S109. http://dx.doi.org/10.1093/geroni/igz038.405.
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Abstract The perception of choice in the caregiving role has emerged as a key theme in qualitative gerontological caregiving research but few studies have examined choice quantitatively. The aim of our study was to test whether perceived choice moderated the relation between level and duration of care and the health impact of caring for a parent over the age of 65. We tested these questions in a series of structural equation models using existing data from the National Alliance for Caregiving, Caregiving in the U.S. 2015 Survey. We found that for adult-child caregivers of parents who reported a lack of choice in taking on the caregiving role, greater responsibilities for assistance with activities of daily living (ADLs) (p<0.01) and instrumental ADLS (p<0.01), and greater time providing care (p<0.05) predicted the negative impact of caregiving on caregiver health. The number of ADLs performed also predicted the emotional stress of caregiving for parents (p<0.01). Conversely, for caregivers who reported that they did have a choice in taking on the caregiving role, level and duration of care were not significantly related to the impact of caregiving on caregiver health, or the emotional stress of caregiving. Women were significantly more likely to report a lack of choice than men (p<0.05). Additional research is needed to explore the meaning of choice, and the ways in which choice may be especially constrained for daughters who care for older adults, in order to develop interventions to ameliorate the potentially deleterious health effects of caregiving on adult-children.
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Bernhold, Quinten S., Norah Dunbar, and Howard Giles. "Accommodation and nonaccommodation as predictors of instrumental caregiving intentions and expectations in grandparent-grandchild relationships." Journal of Social and Personal Relationships 38, no. 1 (September 23, 2020): 158–79. http://dx.doi.org/10.1177/0265407520960235.
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This dyadic study examined how grandparents’ and grandchildren’s perceptions of receiving accommodation, overaccommodation, and underaccommodation were indirectly associated with grandchildren’s intentions to provide instrumental care and grandparents’ expectations that they would receive instrumental care, via both parties’ communication satisfaction. For grandchildren, a series of indirect associations emerged: Grandchildren’s perceptions of receiving accommodation positively predicted grandchildren’s communication satisfaction; grandchildren’s perceptions of receiving overaccommodation and underaccommodation negatively predicted grandchildren’s communication satisfaction. Grandchildren’s communication satisfaction then positively predicted grandchildren’s intentions to provide instrumental care. In contrast, no indirect associations emerged involving the grandparent versions of the variables. Rather, for grandparents, a direct association was observed: Grandparents’ perceptions of receiving accommodation directly and positively predicted grandparents’ expectations to receive instrumental care. This discrepancy in results (indirect associations for grandchildren, a direct association for grandparents) is discussed in terms of the mediating mechanism phase of communication accommodation theory scholarship.
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Bibbo, Jessica, and Christine M. Proulx. "The Impact of a Care Recipient’s Pet on the Instrumental Caregiving Experience." Journal of Gerontological Social Work 61, no. 6 (July 12, 2018): 675–84. http://dx.doi.org/10.1080/01634372.2018.1494659.
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Travers, Jasmine, and Chanee Fabius. "Characterizing Supportive Services Use by Caregiving Relationship Status." Innovation in Aging 5, Supplement_1 (December 1, 2021): 393. http://dx.doi.org/10.1093/geroni/igab046.1529.
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Abstract Informal caregivers of aging older adults experience a high degree of burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that target the provision of support for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of caregiving supportive services caregivers are accessing by relationship status and their source of information. We sought to characterize caregiving supportive services use by caregiving relationship status. We analyzed cross-sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults □65 years. Caregiver relationship status (i.e., spouse, child, other relative/non-relative) was the independent variable. Bivariate analyses were performed to examine the association with caregiver relationship status and 1) any use of supportive services, 2) type of supportive service used among users, and 3) source of information about supportive services. Our sample consisted of 1,871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non-relatives (33.3% vs. 22.5% vs. 22.1%, p=.02, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p=.004). Our findings highlight the need to ensure that other caregiving groups such as spouses have access to important supportive services such as financial support. Medical providers and/or social workers should be better leveraged and equipped to provide this information.
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Park, Myonghwa, Sora Choi, Song Ja Lee, Seon Hwa Kim, Jinha Kim, Younghye Go, and Dong Young Lee. "The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia." International Psychogeriatrics 30, no. 4 (September 28, 2017): 557–67. http://dx.doi.org/10.1017/s104161021700196x.
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ABSTRACTBackground:A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers’ satisfaction and burden in providing care for persons with dementia.Methods:The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden.Results:The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden.Conclusion:The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.
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Pristavec, Teja. "The Burden and Benefits of Caregiving: A Latent Class Analysis." Gerontologist 59, no. 6 (April 6, 2018): 1078–91. http://dx.doi.org/10.1093/geront/gny022.
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Abstract Background and Objectives Informal caregiving to older adults is a key part of the U.S. long-term care system. Caregivers’ experiences consist of burden and benefits, but traditional analytic approaches typically consider dimensions independently, or cannot account for burden and benefit levels and combinations that co-occur. This study explores how benefits and burden simultaneously shape experiences of caregiving to older adults, and factors associated with experience types. Research Design and Methods 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data were linked to obtain reports from caregivers and recipients. Latent class and regression analysis were conducted on a nationally representative sample of U.S. informal caregivers to older persons. Results Five distinguishable caregiving experiences types and their population prevalence were identified. Subjective burden and benefits level and combination uniquely characterize each group. Primary stressors (recipient depression, medical diagnoses), primary appraisal (activities of daily living, instrumental activities of daily living, medical task assistance, hours caregiving), and background/contextual factors (caregiver age, race, relationship to recipient, mental health, coresidence, long-term caregiving) are associated with experience types. Discussion and Implications Findings highlight caregivers’ experience multiplicity and ambivalence, and identify groups that may benefit most from support services. In cases where it is not possible to reduce burden, assistance programs may focus on increasing the benefits perceptions.
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Malhotra, Chetna, Rahul Malhotra, Truls Østbye, David Matchar, and Angelique Chan. "Depressive symptoms among informal caregivers of older adults: insights from the Singapore Survey on Informal Caregiving." International Psychogeriatrics 24, no. 8 (March 22, 2012): 1335–46. http://dx.doi.org/10.1017/s1041610212000324.
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ABSTRACTBackground: 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.Methods: 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.Results: 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.Conclusions: 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.
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Oburu, Paul Odhiambo, and Kerstin Palmérus. "Stress Related Factors among Primary and Part-Time Caregiving Grandmothers of Kenyan Grandchildren." International Journal of Aging and Human Development 60, no. 4 (June 2005): 273–82. http://dx.doi.org/10.2190/xlq2-ujem-taqr-4944.
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The present study examined whether the total stress experienced by 241 caregiving grandmothers was linked to levels of care provided, child behavioral difficulty, and perceived availability of emotional and instrumental support. One hundred and twenty eight of these participants adopted their orphaned grandchildren on full-time basis. The rest ( n = 113) were grandmothers providing partial parenting roles in households that also included one of these children's biological parents. The results indicated that the full-time grandmothers experienced significantly higher levels of stress than did the part-time caregivers. The total stress experienced was related to these participants' perception of child behavioral difficulty and limited instrumental support.
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Chung, Esther O., Ashley Hagaman, Katherine LeMasters, Nafeesa Andrabi, Victoria Baranov, Lisa M. Bates, John A. Gallis, et al. "The contribution of grandmother involvement to child growth and development: an observational study in rural Pakistan." BMJ Global Health 5, no. 8 (August 2020): e002181. http://dx.doi.org/10.1136/bmjgh-2019-002181.
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IntroductionEarly childhood interventions primarily focus on the mother–child relationship, but grandmothers are often critical in childcare in low-resource settings. Prior research is mixed on how grandmother involvement influences child outcomes and there is a paucity of research on grandmother caregiving in low-income and middle-income countries. We examined the role of grandmother involvement on child growth and development in the first 2 years of life cross sectionally and longitudinally in rural Pakistan.MethodsWe used data from the Bachpan Cohort, a longitudinal birth cohort in rural Pakistan. Maternally reported grandmother involvement in daily instrumental and non-instrumental caregiving was collected at 3 and 12 months. A summed score was created and categorised into non-involved, low and high. Outcomes included 12-month and 24-month child growth, 12-month Bayley Scales of Infant and Toddler Development and 24-month Ages and Stages Questionnaire—Socioemotional. We used multivariable generalised linear models to estimate mean differences (MD) at 12 months (n=727) and 24 months (n=712). Inverse probability weighting was used to account for missingness and sampling.ResultsIn our sample, 68% of children lived with a grandmother, and most grandmothers were involved in caregiving. Greater 3-month grandmother involvement was positively associated with 12-month weight z-scores; however, greater involvement was associated with lower 24-month weight z-scores. High 12-month grandmother involvement was associated with improved 12-month cognitive (MD=0.38, 95% CI −0.01 to 0.76), fine motor skills (MD=0.45, 95% CI 0.08 to 0.83) and 24-month socioemotional development (MD=−17.83, 95% CI −31.47 to –4.19). No meaningful associations were found for length z-scores or language development.ConclusionIn rural Pakistan, grandmothers provide caregiving that influences early child development. Our findings highlight the complex relationship between grandmother involvement and child weight, and suggest that grandmothers may positively promote early child cognitive, fine motor and socioemotional development. Understanding how grandmother involvement affects child outcomes in early life is necessary to inform caregiving interventions.
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Smith, Lourett, Dalena van Rooyen, and David G. Morton. "Silent voices: Transition experiences of family members caring for relatives with dementia." Dementia 19, no. 6 (December 10, 2018): 2114–27. http://dx.doi.org/10.1177/1471301218815037.
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Worldwide 46.8 million persons are living with dementia and many are requiring assistance with performing daily living or instrumental functions. It is often the task of family members to provide care for their relatives with dementia. However, they are often the silent, unseen and unacknowledged figures in the lives of people living with dementia. In 2015, we used a phenomenological design utilising visual participatory methods in the form of collages and interviews to explore and describe the transition experiences of eight family members (seven females and one male) living in a South African city regarding how they became caregivers of their relatives with dementia. They often entered their caregiving roles unexpectedly, often not having much choice regarding whether or not to take on the caregiving role. Family members caring for relatives with dementia have unique support needs as they transition into the caregiving role.
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Trujillo, Michael A., Paul B. Perrin, Aaliah Elnasseh, Bradford S. Pierce, and Melody Mickens. "Personality Traits in College Students and Caregiving for a Relative with a Chronic Health Condition." Journal of Aging Research 2016 (2016): 1–9. http://dx.doi.org/10.1155/2016/3650927.
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The purpose of this study was to investigate among college students the relationship between personality traits and willingness to care for a relative with a chronic health condition. 329 undergraduate students completed an online questionnaire. Hierarchical multiple regressions found that after controlling for demographics personality traits explained 10% of the variance in willingness to provide emotional care, 7% in instrumental care, and 7% in nursing care. Within these models, greater empathy was uniquely associated with willingness to provide emotional, instrumental, and nursing care for a family member in the future. Similarly, participants with high agreeableness were more willing to provide emotional care, and participant older age was a unique predictor of instrumental care. The results can help shape research on interventions that incorporate perspective taking, motivational interviewing, and training in life skills as a means of boosting college students’ willingness to provide care for a relative with a chronic health condition.
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Friedman, Esther M., Thomas E. Trail, Christine Anne Vaughan, and Terri Tanielian. "Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs?" Journal of the American Medical Informatics Association 25, no. 9 (July 16, 2018): 1130–36. http://dx.doi.org/10.1093/jamia/ocy086.
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Abstract Background Online peer support groups are an increasingly common venue for caregivers supporting disabled family members to exchange informational, emotional, and instrumental support. We know very little, however, about who uses these groups and whether they are reaching those with the greatest needs. Objective To examine whether caregiving factors (ie, caregiving demands and strain, competing demands, access to support and services, and other caregiving characteristics) are related to online community support use and intensity of use. Method This study used data from a new survey of family caregivers who provide care to disabled military veterans. We used logistic regression models to examine the likelihood of online community support group usage and intensity of use as a function of a variety of caregiving factors. Results Those with greater caregiving demands were more likely to use online peer support. Specifically, helping the care recipient with more activities was associated with a statistically significantly greater likelihood of visiting an online community support group. Caring for a veteran with a neurological or psychological condition, which, in prior work, suggests more complex care needs, was also positively and significantly related to visiting an online community support group. Hours of care and several other caregiving factors were related to intensity of use. Conclusions We show that family caregivers with the most caregiving demands are most engaged with online support communities. This suggests that online communities could be used to support the most vulnerable family caregivers. The implications of this work for online support systems are discussed.
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Wakui, Tomoko. "Within-person Variation In Emotional Exhaustion Among Caregivers For Older Adults." Innovation in Aging 5, Supplement_1 (December 1, 2021): 1051. http://dx.doi.org/10.1093/geroni/igab046.3752.
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Abstract Caregiving is everyday life for family members of older adults. Care recipients’ care requirements, service usage, and caregivers’ physical and emotional conditions differ day by day. Little is known how the differences and variances relate to informal caregivers’ mental health. This study aimed to examine informal caregivers’ day-to-day fluctuation in emotional exhaustion and discuss the within-person effects on mental health among informal caregivers. We developed the Caregiving Visualization Project toolkit (Care VIP), a software program for tracking on daily basis components of care experiences such as care task of Activity of Daily Living (ADL) and Instrumental Activity of Daily Living, service usages, and caregiving burden, as well as eight items of caregivers’ emotional exhaustion. We recruited study participants between May 2018 to March 2019 who provided instrumental help to community-dwelling older adults. A total of 75 participants, who accessed the Care VIP every day by using tablets or computers and completed a one-month study, were analyzed in this study. Females comprised 80.0%, and the average age of caregivers was 52.7 years (SD=9.1). The majority were those who provided care to parents (69.3%), and those who provided to parents-in-law and spouses were 16.0% and 5.3%, respectively. The average score of the eight items on the emotional exhaustion scale, with a 4-point Likert scale, was 23.4 (SD=4.9); however, each question showed different variations. Within-person effects on mental health among informal caregivers will be discussed.
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Ducharme, Francine, Louise Lévesque, Steven H. Zarit, Lise Lachance, and Francine Giroux. "Changes in Health Outcomes among Older Husband Caregivers: A One-Year Longitudinal Study." International Journal of Aging and Human Development 65, no. 1 (July 2007): 73–96. http://dx.doi.org/10.2190/9754-21rh-5148-8025.
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This one-year longitudinal study carried out on a sample of 232 older husband caregivers sought to describe changes in psychological distress and self-perceived health, and to examine relationships between factors drawn primarily from Pearlin's model of caregiving and changes in these two health outcomes. Prediction analyses shows that nearly two thirds of the husbands have unsuccessful outcomes with respect to these two dimensions, that is, most husbands obtain either steadily poor scores at both times of the study or worse scores on one or both outcomes. Higher levels of education and informal instrumental support at time 1, as well as an increase in role overload, are predictive of unsuccessful outcome for psychological distress, whereas an increase in self-efficacy predicts successful outcome for self-perceived health. Overall, husband caregivers vary in their response to caregiving over time. The findings support previous study results showing subjective stressors, rather than objective stressors, and caregiver resources to be significant predictors of caregiving outcomes.
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Bell, Janice, Robin L. Whitney, and Heather M. Young. "FAMILY CAREGIVING IN THE CONTEXT OF INTENSE AND COMPLEX CARE." Innovation in Aging 3, Supplement_1 (November 2019): S439. http://dx.doi.org/10.1093/geroni/igz038.1646.
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Abstract Approximately four in ten family caregivers experience high intensity care, based on the number of caregiving hours, activities of daily living (ADLs) and instrumental ADLs supported for the care recipient. Using the 2015 Caregiving in the U.S. Survey, we examined outcomes associated with high (compared to low or medium) intensity of care. High intensity was positively associated with emotional stress (OR=2.10; 95%CI: 1.52-2.91); financial strain (OR=1.69; 95% CI: 1.210-2.36); physical strain (OR=3.09; 95% CI: 2.21-4.34); and declines in caregiver health (OR=2.14; 95% CI: 1.56-2.93). High intensity was also associated with greater difficulty coordinating recipient care (OR=1.96; 95%CI: 1.42-2.71), higher odds of performing complex medical/nursing tasks (OR=6.85; 95% CI: 5.27-8.90) and, among task performers, greater difficulty performing tasks (OR=2.10; 95% CI: 1.43-3.08). High intensity of care impacts caregiver health and the caregiving role in multiple domains; new clinical and policy approaches are needed to mitigate risks and ensure adequate support.
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Ku, Li-Jung E., Sally C. Stearns, Courtney H. Van Houtven, and George M. Holmes. "The health effects of caregiving by grandparents in Taiwan: an instrumental variable estimation." Review of Economics of the Household 10, no. 4 (July 31, 2012): 521–40. http://dx.doi.org/10.1007/s11150-012-9154-9.
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Antawati, Dewi Ilma, and Duta Nurdibyanandaru. "PARENTING BEHAVIOR OF HEARING IMPAIRED PARENTS." Humanities & Social Sciences Reviews 7, no. 3 (April 3, 2019): 67–73. http://dx.doi.org/10.18510/hssr.2019.7310.
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Purpose of Study: The purpose of this study is to explain the parenting behavior of parents with hearing impairment in an attempt to find out how they take care of their children.
Methodology: Five hearing impaired parents are involved as an informant of the study. The method used is an instrumental case study with depth interview as a data collection technique and content analysis as a method of data analysis. The theoretical perspective used is four aspects of parenting behavior from Bornstein.
Results: The results showed that among the four aspects of parenting behavior, the participants have little or no difficulties in nurturant caregiving, maternal caregiving, and social caregiving. With their hearing difficulties, they can do it with help from their parents or relatives. However, they experience difficulties in social caregiving, particularly in responding child’s emotional expressions and building communication with them, and in didactic caregiving particularly in handling disruptive behavior.
Implications/Applications: The results of this study imply the need to conduct further research about parenting behavior of hearing-impaired parents, and parenting alliance between hearing impaired parent and their own parent. It also implies the need to conduct parent training that suitable for hearing impaired parents, especially in handling children emotion and disruptive behavior, to help them better care for their children.
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Stacy, Kelly E., Joseph Perazzo, Rhonna Shatz, and Tamilyn Bakas. "Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study." Western Journal of Nursing Research 44, no. 3 (October 12, 2021): 227–38. http://dx.doi.org/10.1177/01939459211050957.
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Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.
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Robison, Julie, Noreen Shugrue, Chanee Fabius, Richard Fortinsky, Martha Porter, and Kristin Baker. "Money Follows the Person and Informal Caregivers: Insights Into a New Stage of the Caregiving Career." Innovation in Aging 4, Supplement_1 (December 1, 2020): 103. http://dx.doi.org/10.1093/geroni/igaa057.340.
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Abstract The Money Follows the Person (MFP) program transitions people to the community after extended institutional stays. This study examines effects of this transition on informal caregivers in this new caregiving career stage. Analyses explore whether and how MFP affects caregivers according to caregiver race/ethnicity, and care recipient age and disability type. Data come from surveys with 686 caregivers of persons in Connecticut’s MFP from November 2014-November 2018. Using Pearlin’s Caregiver Stress Process Model, bivariate and multivariate analyses examine predictors of multiple caregiver well-being indicators. Care recipients: older adults (50%), and younger persons with physical (35%), mental health (8%) or developmental (7%) disabilities. Caregivers: non-Hispanic White (62%), non-Hispanic Black (24%), and Hispanic (14%). Caregivers’ average assistance is 5 days/week, 6 hours/day, with 3 activities of daily living and 5 instrumental activities; 11% are paid for caregiving. Compared to other community-based samples, they report low mean levels of burden (4.7 of 16), anxiety (2.2 of 18) and depressive symptoms (31%), and high positive feelings about caregiving (9.5 of 12). A majority feel less stressed (60%) or no change in stress (20%) compared to before and during the institutional stay. Caregivers across the four care recipient groups don’t differ on most outcomes, although more caregivers of people with developmental disabilities (82% vs. 55-61%) report less stress once the person transitions. Black and Hispanic caregivers report more intensive caregiving, but White caregivers report more burden and subjective stress. Findings illustrate the benefits of programmatic support during a newly defined post-institutionalization caregiving career stage.
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Zhu, C. W., N. Scarmeas, R. Torgan, M. Albert, J. Brandt, D. Blacker, M. Sano, and Y. Stern. "Clinical features associated with costs in early AD." Neurology 66, no. 7 (April 10, 2006): 1021–28. http://dx.doi.org/10.1212/01.wnl.0000204189.18698.c7.
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Background: Few studies on cost of caring for patients with Alzheimer disease (AD) have simultaneously considered multiple dimensions of disease costs and detailed clinical characteristics.Objective: To estimate empirically the incremental effects of patients' clinical characteristics on disease costs.Methods: Data are derived from the baseline visit of 180 patients in the Predictors Study, a large, multicenter cohort of patients with probable AD followed from early stages of the disease. All patients initially lived at home, in retirement homes, or in assisted living facilities. Costs of direct medical care included hospitalizations, outpatient treatment and procedures, assistive devices, and medications. Costs of direct nonmedical care included home health aides, respite care, and adult day care. Indirect costs were measured by caregiving time. Patients' clinical characteristics included cognitive status, functional capacity, psychotic symptoms, behavioral problems, depressive symptoms, extrapyramidal signs, comorbidities, and duration of illness.Results: A 1-point increase in the Blessed Dementia Rating Scale score was associated with a $1,411 increase in direct medical costs and a $2,718 increase in unpaid caregiving costs. Direct medical costs also were $3,777 higher among subjects with depressive symptoms than among those who were not depressed.Conclusions: Medical care costs and unpaid caregiving costs relate differently to patients' clinical characteristics. Poorer functional status is associated with higher medical care costs and unpaid caregiving costs. Interventions may be particularly useful if targeted in the areas of basic and instrumental activities of daily living.
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Zhou, Jing, Weiyu Mao, Yura Lee, and Iris Chi. "The Impact of Caring for Grandchildren on Grandparents’ Physical Health Outcomes: The Role of Intergenerational Support." Research on Aging 39, no. 5 (January 4, 2016): 612–34. http://dx.doi.org/10.1177/0164027515623332.
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Little longitudinal data exist on grandparent caregivers and few studies have examined their physical health outcomes. This study examined the effect of caring for grandchildren on grandparents’ physical health and the role of intergenerational support from adult children. Longitudinal data derived from a survey on the well-being of older adults in China were used to conduct path analysis of previous grandparent caregivers (vs. noncaregivers) and repeated grandparent caregivers (vs. noncaregivers). The final sample was 799 grandparents aged 60 or older living in rural China. Three aspects of intergenerational support were measured: financial, emotional, and instrumental support. Repeated grandparent caregivers had better self-rated health (SRH) and fewer limitations than noncaregivers. Previous grandparent caregivers had better SRH compared to noncaregivers. Emotional support mediated the relationship between caregiving and SRH among repeated caregivers. Findings suggest that any caregiving experience (previous or repeated) provides health benefits to grandparents.
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Gaugler, Joseph E., Shannon E. Jarrott, Steven H. Zarit, Mary-Ann Parris Stephens, Aloen Townsend, and Rick Greene. "Respite for Dementia Caregivers: The Effects of Adult Day Service Use on Caregiving Hours and Care Demands." International Psychogeriatrics 15, no. 1 (March 2003): 37–58. http://dx.doi.org/10.1017/s1041610203008743.
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The objective of this study was to determine whether adult day service use was related to decreases in primary caregiving hours (i.e., the time caregivers spent on activities of daily living/instrumental activities of daily living and behavior problems for care recipients) and care recipient function for these domains. Three-month longitudinal data from the Adult Day Care Collaborative Study (N = 400) were used. Adult day service users reported greater decreases in hours spent on behavior problems when compared to nonusers, even after controlling for baseline differences between the two groups. In addition, adult day service users reported decreased frequency of behavior problems in their relatives who attended adult day programs. The findings suggest that adult day services, if used over time, are effective in restructuring caregiving time and may offer potential benefits not only to family caregivers but to community-residing older adults who have dementia as well.
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Muñoz-Bermejo, Villafaina, Collado-Mateo, Postigo-Mota, and Adsuar. "Physical Strength Perception of Older Caregivers in Rural Areas." Medicina 55, no. 10 (October 16, 2019): 692. http://dx.doi.org/10.3390/medicina55100692.
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Background and objective: In an aging population, it is increasingly common for older adults to take care of other older adults. Caregiving tasks may be conditioned by the aging process. This study aims to analyze the perceived physical strength of older caregivers and its impact on the functional capacity to engage in caregiving activities. Methods: A discretionary sampling of caregivers (N = 107), ≥65 years old, in the rural health area of Badajoz (Spain) participated in this cross-sectional study. Measurements included questions about the caregiver’s role (experience, years, hours, difficulties, demands) and their perceived physical strength, ability to perform activities of daily living (ADL), need for help or difficulty for caring. Results: Older caregivers from rural areas perceived a lack of physical strength (71%). These caregivers need more help, have more difficulties, and show less ability to perform ADL. Furthermore, around 80% of the people who had a lack of strength were caring for people with severe or total dependence. There is a direct correlation between the perceived lack of physical strength and the ability to perform basic (r = 0.382, p < 0.01) and instrumental (r = 0.370, p < 0.01) activities. Conclusions: Therefore, the perception of strength and the characteristics of the cared for person may be crucial variables to successfully conduct caregiving tasks.
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Park, Myonghwa, Mira Sung, Sun Kyung Kim, Sungjin Kim, and Dong Young Lee. "Multidimensional determinants of family caregiver burden in Alzheimer's disease." International Psychogeriatrics 27, no. 8 (April 8, 2015): 1355–64. http://dx.doi.org/10.1017/s1041610215000460.
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ABSTRACTBackground:Caregiver burden is a complex and multidimensional construct. Although previous studies have explored numerous factors associated with caregiver burden, these factors have not been identified with a large population-based sample in a theory-based multidimensional way. This study explores multidimensional determinants associated with family caregiver burden to determine the main contributors of caregiver burden in Alzheimer's disease (AD) using a large community dataset.Methods:A retrospective secondary data analysis was conducted on 1,133 patients with AD and 1,133 primary caregivers who were registered in a metropolitan city dementia center in South Korea. The patient data included socio-demographic and disease profiles. The caregiver data consisted of socio-demographic and caregiving profiles.Results:The study results identified that dementia-related factors were the most significant factors, representing 25.6% of caregiver burden and were followed by caregiving-related factors explaining caregiver burden significantly. Behavioral problems and instrumental activities of daily living (IADL) dependency of the patient, spousal relationship, hours of caregiving, and the number of diseases associated with the caregiver were found to be significant individual variables.Conclusions:It is vital to develop a service and support program with a greater emphasis on the behavioral problems and IADL deficiency of patients with AD as well as on improving the competence ability of caregivers to deal with such difficulties.
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Bergren, Stephanie, Qun Le, Dexia Kong, and XinQi Dong. "The Association Between Parents’ Physical Function and Adult Children’s Caregiving Burden." Innovation in Aging 5, Supplement_1 (December 1, 2021): 200. http://dx.doi.org/10.1093/geroni/igab046.769.
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Abstract Using data from 544 older parents-adult children Chinese American dyads, this study aims to understand the association between older parents’ physical function and their adult children’s perceived caregiving burden. Parents’ physical function was assessed by the Katz Index of Activities of Daily Living (ADL) and the Lawton Instrumental ADL (IADL), with higher scores indicating more functional limitations. Adult children’s caregiving burden was assessed in five dimensions, including time dependence, developmental, physical, social, and emotion burden. Logistic regression was used to examine the association. More ADL limitations were associated with a higher likelihood of developmental burden (OR:1.14 (1.06-1.23)) and physical burden (OR:1.14 (1.06-1.23)) burden. More IADL limitations was associated with a higher likelihood of time dependence burden (OR:1.08 (1.03-1.12)), developmental burden (OR:1.06 (1.03-1.09)), and physical burden (OR:1.08 (1.04-1.12)). Parents’ physical function was not related to children’s social and emotional burdens. Practice and research implications will be discussed.
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Baba, Ayako. "Difference in Parent-Child Care Experience by Demographic Characteristics: Focusing on Stress, Needs, and Meaning." Innovation in Aging 4, Supplement_1 (December 1, 2020): 907. http://dx.doi.org/10.1093/geroni/igaa057.3338.
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Abstract OBJECTIVE: In super aging society, unpaid caregivers play important roles. Therefore, they should be supported to realize the lives they want. However, it is unclear what caregivers’ particular needs are under different conditions. This study aimed to explore the difference in forms of stress and needs of caregivers by demographic characteristics. METHOD: Adult children who were caring for or had cared for their parents at home under the Japanese long-term care insurance system (n=653) completed the three open-ended questions concerning caregiving stress, unmet needs, and meaning, combined with a demographic survey. Data were analyzed using text mining approaches such as correspondence analysis and co-occurrence network analysis, which illustrated differences in description according to demographic variables. RESULT: 1) Caregivers of fathers felt stressed when rebuked by care-recipients, whereas daughter caregivers of mothers felt stressed in coping with care-recipient dementia and complaint, and balancing caregiving with parenting. 2) Caregivers in economic difficulty needed instrumental and financial support, whereas others needed flexible support and accessible consultation services. 3) Caregivers living with care-recipients found meaning in experience and repaying parents for raising them, whereas caregivers living away found meaning in improved parent-child relationships and images of care-recipients. Caregivers of persons with dementia found meanings in sharing time of tranquility with care-recipients. CONCLUSION: The study revealed differences in caregiving experience by care dyads, economic situation, living arrangement, and dementia etc. These results suggest that family caregivers should be provided with services to help find meanings in work and reduce stress levels, according to caregiving conditions.
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Yefimova, Maria, Carolyn Pickering, Christopher Maxwell, Frank Puga, and Tami Sullivan. "RISK AND PROTECTIVE FACTORS FOR ABUSE AND NEGLECT IN DAILY CAREGIVING." Innovation in Aging 3, Supplement_1 (November 2019): S544. http://dx.doi.org/10.1093/geroni/igz038.2003.
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Abstract The stress-process model suggests a variety of factors related to the stress-experience as important in the formation of outcomes including elder abuse and neglect (EAN). Multi-level modeling with days (n=831) nested within caregivers (N=50) was used to evaluate relationships between theoretically-based risk and protective factors and odds of EAN. Disruptions in the daily routine are a significant risk factor for abuse and neglect. Participating in a meaningful activity at least twice a day with the care recipient is a significant protective factor for neglect (OR=0.19; CI=0.06-0.64; p=0.01), but not abuse. Hypotheses that spending the full day together would increase the risk of EAN, and receipt of instrumental support and caregiver participation in self-care would decrease risk, were not supported. Findings demonstrate that the risk of EAN varies from day-to-day in the presence and absence of contextual factors. Moreover, abuse and neglect may have different etiologic pathways.
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Engbers, Ruth Anne. "Informal Caregivers’ Perceptions of Needs From Hospice Providers: An Integrative Review." American Journal of Hospice and Palliative Medicine® 36, no. 12 (April 16, 2019): 1114–23. http://dx.doi.org/10.1177/1049909119842365.
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Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers. Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases. Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills. Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC’s transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
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Lohrer, Steven P., Ellen P. Lukens, and Helle Thorning. "Economic Expenditures Associated with Instrumental Caregiving Roles of Adult Siblings of Persons with Severe Mental Illness." Community Mental Health Journal 43, no. 2 (March 3, 2006): 129–51. http://dx.doi.org/10.1007/s10597-005-9026-3.
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Garcia, Nicole, Anna Papazyan, Sarah Choi, and Yeonsu Song. "Caregiving Between Spouse and Adult Child Caregivers of Older Adults with Cognitive Impairment." Innovation in Aging 5, Supplement_1 (December 1, 2021): 791–92. http://dx.doi.org/10.1093/geroni/igab046.2920.
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Abstract Prior studies of caregiving characteristics by type of caregivers are inconsistent, particularly those who are spouses and adult children. This study examined caregiving characteristics between spouses and adult children of cognitively impaired older adults. We analyzed phone-screening data from an ongoing trial of a dyadic sleep intervention program for persons with dementia and their caregivers. Data included spouse caregivers (n=52) and adult child caregivers (n=24). Nearly all participants (95%) lived with their care recipients (91% with dementia). Types of caregiving activities were measured by activities of daily living [ADLs] and instrumental ADLs [IADLs] with their levels of intensity (0 [total independent] to 3 [total dependent]). Care recipients’ sleep was measured by the Neuropsychiatric Inventory-Nighttime Behavioral Subscale (8 items). Analyses included Pearson correlations and t-tests. Adult child caregivers helped their care recipients at significantly higher levels as indicated by their measure of dependence in dressing (1.46±1.22 vs. 0.87±1.16, p=0.044), continence (1.22±1.38 vs. 0.54±1.04, p=0.021), laundry (2.87±0.46 vs. 2.13±1.24, p=0.007), and transportation (3.00±0.00 vs. 2.63±0.79, respectively; p=0.031) than spouse caregivers. Adult child caregivers also reported their care recipients having more difficulty falling asleep (56% vs. 19%, respectively; p=0.004) and having more numbers of sleep problems than spouse caregivers (3.54±2.08 vs. 2.48±1.51, respectively; p=0.014). The findings suggest that adult child caregivers may involve higher levels of caregiving responsibilities during daytime and nighttime, compared to spouse caregivers. Further research needs to explore complimentary ways to involve spouse and adult child caregivers in the care of this vulnerable population.
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Liang, Jiaming, María P. Aranda, and Donald A. Lloyd. "Association between Role Overload and Sleep Disturbance among Dementia Caregivers: The Impact of Social Support and Social Engagement." Journal of Aging and Health 32, no. 10 (June 11, 2020): 1345–54. http://dx.doi.org/10.1177/0898264320926062.
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Objective: To explore the association between role overload (RO) and sleep maintenance insomnia (SMI), and the moderation effects of social support and social engagement (SE). Methods: We report a cross-sectional study using data drawn from the 2015 National Health and Aging Trends Study and National Study of Caregiving. We used multiple regression and controlled for demographics and potential confounders. Results: Nearly 45% of caregivers reported suffering from SMI during “some” and “more” nights within the past month with one half reporting “almost” or “every” night. RO was found positively associated with the risk of SMI. Instrumental support moderated the effect of RO on SMI overall, although moderation was limited to a subsample of adult children caregivers. Discussion: The sleep quality of dementia caregivers may be affected by RO, particularly for adult children caregivers. Increasing instrumental support may be beneficial to caregiver's sleep quality.
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Chou, Yueh-Ching, Li-yeh Fu, Li-Chan Lin, and Yue-Chune Lee. "Predictors of subjective and objective caregiving burden in older female caregivers of adults with intellectual disabilities." International Psychogeriatrics 23, no. 4 (August 12, 2010): 562–72. http://dx.doi.org/10.1017/s1041610210001225.
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ABSTRACTBackground: Informal, unpaid, and lifelong older caregivers of adults with intellectual disabilities (ID) are usually female and most often are mothers of adults with ID. However, research exploring different predictors of subjective and objective burden among these older female caregivers is sparse. The objective of this study was to examine whether the subjective and objective burden as well as positive appraisals are predicted by the same or different variables linked to the caregivers and the adults with ID.Methods: Face-to-face interview questionnaires were administered in a city in Taiwan in 2006–2007 and 350 female family caregivers aged 55 years and older completed the interview in their homes. The independent variables included adult care demands and caregiver variables, while the dependent variables were caregivers’ subjective burden, caregivers’ objective burden and caregivers’ positive appraisals.Results: The results demonstrated that adult care demands were associated more with the objective than the subjective caregiving burden. The strongest predictors of both subjective and objective burden were the care recipient's instrumental activities of daily living functionality, caregiver's age, and caregiver's health status. The significant predictors for positive caregiving appraisals were the caregiver's age and the caregiver's level of social support.Conclusions: The results indicate that both the subjective and objective burdens were mostly related to the same factors, that is, to the characteristics of the older female caregivers and the recipients of care with ID. On the other hand, positive attitudes towards caregiving roles were only associated with caregiver variables.
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Jones, Keith S., Barbara Cherry, Dennis J. Harris, and Mohan Sridharan. "Formative Analysis of Aging in Place: Implications for the Design of Caregiver Robots." Proceedings of the Human Factors and Ergonomics Society Annual Meeting 61, no. 1 (September 2017): 1145. http://dx.doi.org/10.1177/1541931213601770.
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Many have conceptualized caregiver robots as consumer products and studied elders’ perceived needs afor and preferences about such products. For reviews, please see (Broadbent, Stafford, & MacDonald, 2009; Jones & Schmidlin, 2011). That approach, though, could create robots that cannot satisfy elders’ actual caregiving needs. Alternatively, one can conceptualize caregiver robots as workers in complex socio-technical systems. To do so, one would need a detailed account of the caregiving that takes place in elders’ homes. Unfortunately, as noted in a National Research Council (2011) report, such a detailed account of caregiving does not exist. Accordingly, we sought to develop such an account. There are many ways to analyze work (for a discussion of general approaches, see Vicente, 1999). They can be categorized into 3 general types: normative, descriptive, and formative approaches (Vicente, 1999). We adopted a formative approach because formative approaches are tailored to the analysis of complex socio-technical systems (Vicente, 1999). They capture work requirements without specifying how that work must be done or who must do it. For example, the constraint “must not lose track of time” captures a work requirement but allows the associated work to be accomplished in a number of different ways (e.g., by checking a clock, setting an alarm) and by a number of different entities (e.g., family member, caregiver robot). To conduct our analysis, researchers observed caregiving in elders’ homes, and interviewed caregivers about their work activities. Researchers then organized their findings into an Abstraction Hierarchy (AH; Vicente, 1999), that is, a detailed account of the aging in place socio-technical system. Our primary aim was to create an AH that describes means-ends relations between the complex socio-technical caregiving system’s overall objectives, work tasks, and physical resources. Such a description provides a detailed account of the caregiving work domain, and serves as the foundation for subsequent formative analyses of caregiving. To create the AH, research team members completed 4 steps: 1) analyzing existing caregiving documentation, 2) observing caregiving and interviewing caregivers, 3) drafting and/or refining the AH, and 4) validating the AH. Steps 2 and 3 were iterative. This process is consistent with Naikar, Hopcraft, and Moylan’s (2005) recommendations regarding formative analyses. The AH made clear that caregiving for those who age in place is a complex and nuanced activity. More specifically, our analysis confirmed existing research regarding categories of caregiving tasks and revealed aspects of caregiving that have not been detailed so far. The existing literature indicates that caregivers assist older adults with self-maintenance activities of daily life (ADLs), such as eating, toileting, and dressing (Lawton, 1990), instrumental activities of daily life (IADLs), such as cooking, cleaning, and shopping (Lawton, 1990), and enhanced activities of daily life (EADLs), such as participating in social activities and pursuing hobbies (Rogers, et al., 1998). Our analysis confirmed those findings, and our AH provides a more detailed account of those tasks than was previously available. Our analysis also revealed aspects of caregiving for those who are aging in place that have not been detailed thus far in the research literature. For example, our AH contains a purpose-related function called Counseling, which concerns ensuring that the elder does not experience psychological distress. To perform this function, the caregiver must understand the elder’s situation (e.g., a family conflict), use information about that situation (e.g., experience with relevant family members and/or past conflicts; the elders’ past choices), and offer the elder advice about how to proceed (e.g., which family member’s advice to follow). The main implication of our AH for the design of caregiver robots is that such robots cannot be designed to perform purpose-related functions in a one-size-fits-all way; rather, caregiver robots must exhibit context-conditioned variability (Vicente, 1999). Our AH has many other important implications for the design of caregiver robots, which unfortunately cannot be detailed here due to space constraints.
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Gallo, Haley B., Chia Ying Chen, and Donna Benton. "HOW DOES MODE OF SERVICE DELIVERY IMPACT CAREGIVER STRAIN? A MIXED-METHODS STUDY OF CAREGIVERS IN LOS ANGELES." Innovation in Aging 3, Supplement_1 (November 2019): S340. http://dx.doi.org/10.1093/geroni/igz038.1233.
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Abstract As the number of people living with Alzheimer’s disease and related dementias increases, so too will the number of people who care for them. This growing population requires instrumental and emotional support as they fulfill their caregiving duties. CareJourney is an online platform that provides this support; it can be used either alone, or with traditional in-person and phone-mediated consultations with family care navigators (FCNs). The intent of CareJourney is to provide a greater opportunity for self-directed services, as well as flexibility for working caregivers and those who prefer using technology. Satisfaction surveys (N=222) were analyzed to evaluate caregivers’ perceptions of CareJourney and the traditional service delivery modes. Additionally, five 30-minute interviews with caregivers were coded by two researchers (kappa=0.84) for a more in-depth understanding. Ten percent of survey respondents used CareJourney, and preliminary results from both the interviews and the survey suggest that caregiver burden, lack of time, and desire for a personal connection with FCNs influence mode of service delivery. Although a quarter of users relied on CareJourney to find caregiving resources and email their FCNs because it was more convenient than traditional modes, the interviews and surveys revealed that the caregivers most valued the personal touch that came from interacting with FCNs. Speaking with FCNs over the phone or in-person allowed caregivers to feel “reassured,” “less isolated,” and “comforted” as they discussed caregiving strains. Future interventions and services for caregivers should be offered using multiple modes to accommodate a range of time-demands and preferences for personal connection.
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Chang, E.-Shien, Sara Czaja, Tony Rosen, and Jerad Moxley. "IDENTIFYING FACTORS ASSOCIATED WITH CAREGIVER NEGLECT IN OLDER PERSONS WITH DEMENTIA." Innovation in Aging 6, Supplement_1 (November 1, 2022): 872. http://dx.doi.org/10.1093/geroni/igac059.3116.
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Abstract Caregiver neglect is common among older persons with dementia and is associated with significant morbidity and mortality. Despite this, little empirical research exists examining factors that contribute or prevent neglect. Our goal was to identify caregiving factors that may be associated with caregiver neglect. Data were drawn from the baseline information of 240 caregivers enrolled in the Caring for the Caregiver Network study who provided care to a family member with dementia. Caregiver depression, burden, social support, perceived mutuality with care-recipients, positive aspects of caregiving, and self-perceived caregiving preparedness, were measured using validated scales. To maximize sensitivity in our measure of caregiver neglect, we operationalized caregiver neglect as consisting of: 1) caregivers’ failure to meet care-recipients’ needs, using 8-item instrumental activities of daily living (IADL) and 6-item ADL scales, and 2) caregivers not receiving additional formal services (e.g., visiting nurses; home care aides) to address care-recipients’ unmet needs. Selection of independent variables into multivariate regression models examining predictors of neglect was based on significance in bivariate analysis (p < .10). Caregiver neglect was found in 29.2% of caregivers. The caregiver being male was significantly associated with greater risk of neglect. In the final adjusted model, only caregiver preparedness was found to be a significant risk factor for neglect (β = -.16 SE=.10, p < .05). This analysis provides the first evidence of the association between caregiver preparedness and risk of caregiver neglect. Future research should examine possible psycho-social mechanism linking preparedness and neglect to inform neglect prevention and intervention programming.
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Hutcheon, Emily, Raidah Noshin, and Bonnie Lashewicz. "Interrogating ‘acquiescent’ behavior of adults with developmental disabilities in interactions with caregiving family members: an instrumental case study." Disability & Society 32, no. 3 (March 3, 2017): 344–57. http://dx.doi.org/10.1080/09687599.2017.1295840.
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Canell, Anastasia, Hannah Bashian, and Grace Caskie. "Do the Reasons Emerging Adults Become Informal Caregivers Relate to Future Willingness to Care? A Mixed-Methods Study." Innovation in Aging 4, Supplement_1 (December 1, 2020): 357. http://dx.doi.org/10.1093/geroni/igaa057.1149.
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Abstract Approximately 12-18% of family caregivers to older adults in the U.S. are emerging adults (aged 18-25), yet minimal research focuses on this subgroup of caregivers (Levine, 2005). Although several theories have developed to explain the growing number of emerging adults assuming informal caregiving roles (e.g., alleviating burden on middle-aged caregivers, family obligation; Dellmann-Jenkins & Brittain, 2003), the reasons why emerging adults become caregivers have not been studied. In the current study, a sample of 248 emerging adult caregivers were asked to describe the circumstances that led to providing unpaid care to an older adult. Using discovery-oriented coding methodology, 11 themes emerged within participants’ responses: care-recipient illness (35.5%), familial relationship (35.5%), care-recipient became dependent (23.8%), proximity (13.7%), only option (10.1%), reciprocal care (8.9%), availability (8.5%), age-related decline (6.9%), monetary restrictions (6.9%), care-recipient desire (6.0%), and community service (4%). Follow-up analyses found that participants who identified familial relationships (e.g., “They are my parents so I felt obligated...”) were less likely to endorse willingness to provide nursing care in the future compared to those who did not identify familial relationships (p=.032). Participants who identified care-recipient dependency as a circumstance leading to caregiving (e.g., “My grandmother fell and was in rehab...”) were more likely to endorse willingness to provide instrumental (p=.034) and emotional (p=.047) care in the future than those who did not identify care-recipient dependency. These results demonstrate the unique reasons that may lead emerging adults to begin caregiving and how these reasons relate to future willingness to care for an older adult.
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K, Conniff, and Gomez R. "A-05 Dyadic Influence on Levels of Depression in Individuals with Alzheimer’s Disease." Archives of Clinical Neuropsychology 35, no. 6 (August 28, 2020): 795. http://dx.doi.org/10.1093/arclin/acaa068.05.
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Abstract Objective Two people who are significantly linked, such as in a husband and wife relationship, are known as a dyad. Dyadic units are helpful to look at as members influence the function of one another. This study looks at families where one member is the caregiver and the other has Alzheimer’s disease and receives care (labeled here as Alzheimer’s disease care recipient or CR). Symptoms of Alzheimer’s include cognitive and functional impairment, social withdrawal, impaired judgment, and mood changes. Notably, there is little research examining how Alzheimer’s dyads influence one another’s level of depression. This study examines how the influence of cognitive and psychosocial variables from the dyad impact depression severity in CRs. Method Archival data of 670 Alzheimer’s disease community-dwelling care recipients from several major cities throughout the United States from the Resources for Enhancing Alzheimer’s Caregivers Health II (REACH II) study was analyzed. The measures included: Mini Mental State Examination (MMSE), Revised Memory and Behavior Problems Checklist (RMBPL), Activities of Daily Living/Instrumental Activities of Daily Living (IADL), Caregiver Burden, Social Support, and Positive Aspects of Caregiving. Results A multiple regression found that caregiver burden (β = 0.34, p < .001), IADL (β = 0.14, p < .001), and positive aspects of caregiving (β = 0.10, p = .02) significantly predicted CR depression ratings. Conclusion Increased positive aspects of caregiving, caregiver burden, and higher levels of CR functional decline were associated with significantly increased levels of depression in CRs. Increased CR depression could correspond with higher levels of awareness during earlier stages of the disease process regarding their impairment and impact on their caregiver.