The impact of relationships, motivations, and meanings on dementia caregiving outcomes.

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Quinn, Catherine; Clare, Linda; McGuinness, Ted; Woods, Robert T

2012-11-01

Numerous theoretical models have been developed to explore how caregiving can impact on caregiving outcomes. However, limited attention has been given to the effects of caregivers' motivations for providing care, the meaning they find in caregiving, and the nature of their relationship with the care-recipient. The current study explored the associations between intrinsic and extrinsic motivations, ability to find meaning in caregiving, and pre-caregiving and current relationship quality, and the way in which these variables interact to influence caregiving outcomes. This was a cross-sectional questionnaire study, in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The results showed that intrinsic motivations, meaning, and pre-caregiving and current relationship quality were significantly related to each other, while extrinsic motivations were only related to intrinsic motivations and meaning. All these factors were significantly related to caregiving outcomes as measured by caregiver burden, role captivity, and competence. Based on these findings, it is recommended that interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers' motivations for providing care. More longitudinal research is needed to explore how meanings, motivations, and relationship quality change over the caregiving career.

Psychosocial experiences and needs of Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and relationships.

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El Masry, Yasmeen; Mullan, Barbara; Hackett, Maree

2013-01-01

Despite stroke being the most common form of cerebrovascular disease, there has been relatively little attention paid to the psychosocial experiences and needs of Australian caregivers of people who have had a stroke. Twenty Australian informal caregivers and 10 stroke survivors participated in individual semi-structured qualitative interviews covering all aspects of caregiving, including stroke survivors' views on their caregiver's experiences. The 5 interrelated topics most discussed were changes in relationships and support services, including being told to expect a poor outcome; caregiver attributes and coping strategies; stroke survivor limitations; external employment and financial stressors; and unexpected positive changes in relationships and priorities. Caring for a stroke survivor involves a complex interaction of these factors that appear to be moderated by the quality of the pre-existing stroke survivor-caregiver relationship and the poststroke coping strategies used. Particular attention should be paid to how prognosis is conveyed and whether appropriate outpatient services are available. Clinicians should also consider discussing appropriate caregiver coping strategies and the quality of the relationship between the stroke survivor and caregiver.

Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults.

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Beach, Scott R; Schulz, Richard

2017-03-01

To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Adult caregiving among American Indians: the role of cultural factors.

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Goins, R Turner; Spencer, S Melinda; McGuire, Lisa C; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A

2011-06-01

With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Data came from a cross-sectional study of 5,207 American Indian adults residing on 2 closely related Lakota Sioux reservations in the Northern Plains and one American Indian community in the Southwest. Cultural factors included measures of cultural identity and traditional healing practices. Seventeen percent of our sample reported being caregivers. In both the Northern Plains and Southwest, caregiving was positively correlated with younger age, being a woman, larger household size, attending and participating in Native events, and endorsement of traditional healing practices. In both regions, attendance and participation in Native events and engagement in traditional healing practices were associated with increased odds of caregiving after adjusting for covariates. Only in the Northern Plains did we find that speaking some Native language at home was associated with increased odds of being a caregiver. Examination of interaction terms indicated some sex differences in the association between cultural factors and caregiving in the Northern Plains but not in the Southwest. Our findings indicate that greater cultural identity and engagement in traditional healing practices are related to caregiving in American Indian populations. Caregiving research, intervention efforts, and caregiving programs and services in Native communities should pay special attention to the dynamics of culture and caregiving.

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

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Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T

2018-03-01

Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support.

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Ong, Hui Lin; Vaingankar, Janhavi Ajit; Abdin, Edimansyah; Sambasivam, Rajeswari; Fauziana, Restria; Tan, Min-En; Chong, Siow Ann; Goveas, Richard Roshan; Chiam, Peak Chiang; Subramaniam, Mythily

2018-01-31

The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia.

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Yu, Wenjun; Chen, Jia; Hu, Jize; Hu, JingChu

2018-01-24

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross-sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis-stress perspective. Goodness-of-fit indices (χ 2 /df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis-stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden. © 2018 Family Process Institute.

Cumulative stress and substantiated maltreatment: the importance of caregiver vulnerability and adult partner violence.

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Wekerle, Christine; Wall, Anne-Marie; Leung, Eman; Trocmé, Nico

2007-04-01

Our goal is to assess the effect of caregiver vulnerabilities, singly and in combination, on the substantiation of child abuse (physical, sexual) and neglect, while controlling for relevant background variables. We test the moderator role of adult partner violence in qualifying the relationship between caregiver vulnerabilities and maltreatment substantiation. Secondary analyses of the 1998 Canadian Incidence Study of Reported Child Maltreatment (CIS) are used to predict child protective service investigation substantiation versus non-substantiation from a range of caregiver vulnerability factors. Involvement in partner violence was examined as a moderator in the relation between caregiver vulnerabilities and maltreatment substantiation. The CIS is an epidemiological survey of first-reported cases to child protective services, using a random sample of child welfare agencies across Canada. Child welfare workers completed a research form on the child, primary caregiver, family, perpetrator, severity and type of maltreatment, as well as services and court outcomes. All maltreatment classifications were assigned according to the Canadian legal definition of child abuse and neglect. Hierarchical logistic regression analyses were used, with stepped entry of: (1) demographic factors, socioeconomic disadvantage, and caregiver's own history of maltreatment; (2) caregiver vulnerability factors; (3) involvement in partner violence; (4) the interaction between caregiver vulnerability and partner violence. Caregiver substance abuse was found to be the single most potent kind of caregiver vulnerability in predicting maltreatment substantiation. When the total number of vulnerabilities was used as the predictor, prediction across all types of maltreatment increased, especially for substantiated neglect. Analyses also showed that the presence of partner violence in the home exacerbated the effect of caregiver vulnerability on substantiation. The total number of caregiver

Formal caregivers of older adults: reflection about their practice

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Marina Picazzio Perez Batista

2014-10-01

Full Text Available OBJECTIVE To understand the job function of caregivers of older adults and contribute to the debate on the consolidation of this professional practice. METHODOLOGICAL PROCEDURES This is a descriptive, qualitative, and exploratory study. Four focal group sessions were performed in 2011 with 11 elderly companions, formal caregivers of older adults in the Programa Acompanhante de Idosos (Program for Caregivers of Older Adults, Sao Paulo, SP, Southeastern Brazil. These sessions, guided by a semi-structured script, were audio-recorded and fully transcribed. Data were analyzed using the Content Analysis technique, Thematic Modality. RESULTS In view of considering the caregivers of older adults as a new category of workers, it was difficult to define their duties. The elderly companions themselves as well as the care receivers, their families, and the professionals that comprised the team were unclear about their duties. The professional practice of these formal caregivers has been built on the basis of constant discussions and negotiations among them and other team members in Programa Acompanhante de Idosos during daily work. This was achieved via a recognition process of their job functions and by setting apart other workers’ exclusive responsibilities. CONCLUSIONS The delimitation of specific job functions for elderly companions is currently one of the greatest challenges faced by these workers to develop and consolidate their professional role as well as improve Programa Acompanhante de Idosos.

Cognitive reserve and self-efficacy as moderators of the relationship between stress exposure and executive functioning among spousal dementia caregivers.

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Pertl, M M; Hannigan, C; Brennan, S; Robertson, I H; Lawlor, B A

2017-04-01

A substantial literature has reported that stress negatively impacts on cognitive processes. As dementia caregiving can be stressful, it has been hypothesized that the challenges of dementia care may increase caregivers' own vulnerability to cognitive decline. Prefrontal processes are thought to be most vulnerable to stress; however, few studies have examined whether greater caregiver stress predicts poorer executive dysfunction, and no previous research has considered potential moderators of this relationship. We examined (1) whether greater psychological stress mediated a relationship between caregiver stress exposure and executive functioning and (2) whether greater self-efficacy and cognitive reserve (CR) moderated this relationship. Spousal dementia caregivers (n = 253) completed the Neuropsychiatric Inventory Questionnaire (stress exposure), the Perceived Stress Scale, the National Adult Reading Test (CR), the Fortinsky dementia-specific caregiver self-efficacy scale, and the Color Trails Test (executive functioning). Moderated mediation was tested using the PROCESS macro. Age, gender, and dementia risk factors were included as covariates. Greater stress exposure indirectly predicted executive functioning through psychological stress. Stronger relationships between greater psychological stress and poorer executive functioning were observed among caregivers with lower CR; there was no evidence that self-efficacy moderated the relationship between stress exposure and psychological stress. Our findings are in line with the idea that greater psychological stress in response to challenges associated with dementia care predicts poorer caregiver executive functioning, particularly among caregivers with low CR. However, these findings are cross sectional; it is also possible that poorer executive functioning contributes to greater caregiver stress.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

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Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Respite Utilization and Responses to Loss among Family Caregivers: Relationship Matters

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DeCaporale, Lauren; Mensie, Lauren; Steffen, Ann

2013-01-01

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children.…

Family caregivers' narratives of mental health treatment usage processes by their Latino adult relatives with serious and persistent mental illness.

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Marquez, Jorge A; Ramírez García, Jorge I

2013-06-01

Family caregivers' views and experiences related to treatment usage processes by their adult relatives with serious and persistent mental illness (SPMI) were empirically examined in a sample of Latino caregivers (n = 17) who were users of services at the National Alliance on Mental Illness (NAMI) in a predominantly Latino- (80%) and Mexican-descent large city in the Southwest United States. We conducted a stability check of qualitative findings with a second sample of Latino caregivers with no exposure to NAMI (n = 15). Overall, the combined sample (N = 32) compared similarly with larger samples of Latino adults and caregivers in quantitative measures of acculturation, familism, caregiver stigma, and depression symptoms. Together, caregivers' stigma and cultural beliefs, such as vergüenza (shame), use of folk healers, and lack of insurance, were major reported barriers to service usage. Family support (and lack of) for treatment also weighed heavily as a facilitator (and a barrier) of service usage, thus highlighting the complexity of family relationship contexts. Substantial portions of caregivers reported that treatment initiation was prompted by psychiatric hospitalization (50%), and that positive experiences with service providers were influential in treatment retention (72%). Given the high levels of family involvement reported among Latino caregivers, the findings underscore the potential role of family caregivers in treatment engagement and retention. Future research is needed that examines family caregivers' role in treatment with models that consider the interplay between cultural background, family level relationships, and service system contexts. PsycINFO Database Record (c) 2013 APA, all rights reserved.

Hiring and screening practices of agencies supplying paid caregivers to older adults.

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Lindquist, Lee A; Cameron, Kenzie A; Messerges-Bernstein, Joanne; Friesema, Elisha; Zickuhr, Lisa; Baker, David W; Wolf, Michael

2012-07-01

To assess what screening practices agencies use in hiring caregivers and how caregiver competency is measured before assigning responsibilities in caring for older adults. One-to-one phone interviews in which interviewers posed as prospective clients seeking a caregiver for an older adult relative. Cross-sectional cohort of agencies supplying paid caregivers to older adults in Illinois, California, Florida, Colorado, Arizona, Wisconsin, and Indiana. Four hundred sixty-two home care agencies were contacted, of which 84 were no longer in service, 165 offered only nursing care, and 33 were excluded; 180 agencies completed interviews. Agencies were surveyed about their hiring methods, screening measures, training practices, skill competencies assessments, and supervision. Two coders qualitatively analyzed open-ended responses. To recruit caregivers, agencies primarily used print and Internet (e.g., Craigslist.com) advertising (n = 69, 39.2%) and word-of-mouth referrals (n = 49, 27.8%). In hiring, agencies required prior "life experiences" (n = 121, 68.8%) few of which (n = 33, 27.2%) were specific to caregiving. Screening measures included federal criminal background checks (n = 96, 55.8%) and drug testing (n = 56, 31.8%). Agencies stated that the paid caregiver could perform skills, such as medication reminding (n = 169, 96.0%). Skill competency was assessed according to caregiver self-report (n = 103, 58.5%), testing (n = 62, 35.2%), and client feedback (n = 62, 35.2%). General caregiver training length ranged from 0 to 7 days. Supervision ranged from none to weekly and included home visits, telephone calls, and caregivers visiting the central office. Using an agency to hire paid caregivers may give older adults and their families a false sense of security regarding the background and skill set of the caregiver. © 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.

Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

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Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-06-01

Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.

Receipt of Caregiving and Fall Risk in US Community-dwelling Older Adults.

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Hoffman, Geoffrey J; Hays, Ron D; Wallace, Steven P; Shapiro, Martin F; Yakusheva, Olga; Ettner, Susan L

2017-04-01

Falls and fall-related injuries (FRI) are common and costly occurrences among older adults living in the community, with increased risk for those with physical and cognitive limitations. Caregivers provide support for older adults with physical functioning limitations, which are associated with fall risk. Using the 2004-2012 waves of the Health and Retirement Study, we examined whether receipt of low (0-13 weekly hours) and high levels (≥14 weekly hours) of informal care or any formal care is associated with lower risk of falls and FRIs among community-dwelling older adults. We additionally tested whether serious physical functioning (≥3 activities of daily living) or cognitive limitations moderated this relationship. Caregiving receipt categories were jointly significant in predicting noninjurious falls (P=0.03) but not FRIs (P=0.30). High levels of informal care category (P=0.001) and formal care (Pfall risk relative to low levels of informal care. Among individuals with ≥3 activities of daily living, fall risks were reduced by 21% for those receiving high levels of informal care; additionally, FRIs were reduced by 42% and 58% for those receiving high levels of informal care and any formal care. High levels of informal care receipt were also associated with a 54% FRI risk reduction among the cognitively impaired. Fall risk reductions among older adults occurred predominantly among those with significant physical and cognitive limitations. Accordingly, policy efforts involving fall prevention should target populations with increased physical functioning and cognitive limitations. They should also reduce financial barriers to informal and formal caregiving.

Self-transcendence, spiritual perspective, and sense of purpose in family caregiving relationships: a mediated model of depression symptoms in Korean older adults.

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Kim, Suk-Sun; Hayward, R David; Reed, Pamela G

2014-09-01

This study used structural equation modeling to test the mediated model of late-life depression to understand the mechanisms that account for the direct and indirect effects of spiritual variables and purpose in life on depression within the context of Korean family caregiving relationships. A secondary analysis study design used data from a study that tested a theory of family interdependence of 157 Korean elder-family caregiver dyads in Seoul, Korea. Both caregivers' and elders' self-transcendence was positively related to their own sense of purpose in life. However, only elders' spiritual perspective was related to purpose in life. Also, elders' purpose in life was positively associated with caregivers' purpose in life. Furthermore, there was a strong negative relationship between elders' purpose in life and their depressive symptoms, but there was not a significant negative relationship between caregivers' purpose in life and elders' depressive symptoms. Last, elders' purpose in life mediated the negative effects of elders' self-transcendence and spiritual perspective and of caregivers' self-transcendence and purpose in life on elders' depression. The findings suggest that purpose in life for both the caregiver and elder played an important role in elders' depression. Self-transcendence also was related to decreased depression in elders. It is suggested that more attention be given to caregiver and elder purpose in life in developing interventions to reduce or avoid elder depression in Korean elders.

Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.

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Silver, Heidi J; Wellman, Nancy S; Galindo-Ciocon, Daisy; Johnson, Paulette

2004-01-01

We used stress process theory to identify family caregiving variables that are salient to the experience of managing older adults' home enteral nutrition. In this article, we describe the specific tasks family caregivers performed and their unique training needs in the context of caregiver preparedness, competence, effectiveness, and health care use. Hospital billing lists from two university-affiliated institutions in Miami, FL, were used to identify older adults who had enteral tubes placed over a 6-month period. Consent was obtained from those older adults discharged for the first time on home enteral nutrition and their family caregivers at the first scheduled outpatient visit. In-home interviews were conducted with a diverse sample of 30 family caregivers (14 white, 8 Hispanic, 7 African-American, 1 Asian) during their first 3 months (mean=1.83+/-0.69 months) of home enteral nutrition caregiving. Descriptive statistics were used to summarize data for all variables; chi(2) analysis was conducted to analyze differences in categorical variables. One-way analysis of variance was used to analyze mean differences among caregivers grouped by ethnicity for total number of hours and tasks performed. Post hoc comparisons were conducted using the Tukey HSD test. The Spearman rho correlations were calculated to assess bivariate associations between quantitative variables. Caregivers reported providing from 6 to 168 hours of care weekly (mean=61.87+/-49.67 hours), in which they performed an average of 19.73+/-8.09 caregiving tasks daily. Training needs identified were greatest for technical and nutrition-related tasks. Preparedness for caregiving scores were low (mean=1.72, maximum=4.0) and positively correlated with caregiver competence (P<.001) and self-rated caregiver effectiveness (P=.004). Preparedness negatively correlated with health care use (P=.03). Caregivers of older adults on home enteral nutrition need training for multiple nutrition-related and caregiving

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

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Wojtaszczyk, Ann; Glajchen, Myra; Portenoy, Russell K; Berdella, Maria; Walker, Patricia; Barrett, Malcolm; Chen, Jack; Plachta, Amy; Balzano, Julie; Fresenius, Ashley; Wilder, Kenya; Langfelder-Schwind, Elinor; Dhingra, Lara

2017-10-17

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability.

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Riffin, Catherine; Van Ness, Peter H; Wolff, Jennifer L; Fried, Terri

2017-08-01

To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Nationally representative surveys of caregivers and older adults in the United States. 2011 National Health and Aging Trends Study and National Study of Caregiving. Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers

Caregiving and Adults with Intellectual Disabilities Affected by Dementia

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Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

2010-01-01

Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

[Evaluation of the primary caregiver syndrome when caring for elderly adults with immobility syndrome].

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Morales-Cariño, Elizabeth María; Jiménez-Herrera, Blanca L; Serrano-Miranda, Tirzo A

2012-01-01

Caregiver syndrome may develop in caregivers of elderly adults. To evaluate the repercussions of the immobility syndrome present in elderly adults on their primary caregivers as well as to determine the clinical and socio-demographic characteristics of the elderly adult and caregiver. The study population included patients over 65 recruited in the Geriatric Rehabilitation Department, with the diagnosis of immobility syndrome and that required a primary caregiver. A questionnaire including socio-demographic variables was applied to all patients and caregivers, and the Zarit scale was also applied to caregivers in order to determine the presence of caregiver syndrome. Analysis was performed with descriptive statistical methods; Student's t test and Fisher's test were used for comparisons between strata. 75 patients and their caregivers were evaluated; patient average age was 75.9 years and 85.3% were female. 50.7% (38 cases) had mild immobility. The average caregiver's age was 50.6%, 70.7% were female and 57.3% were the patient's daughter. Caregiver syndrome was detected in 60% of them: 57.7% had mild symptoms and in 42.2%, symptoms were moderate to severe. No statistically significant association was established between the development of caregiver syndrome and the degree of patient immobility. Caregivers of patients with immobility syndrome are at high risk of developing caregiver syndrome, thus underscoring the need to include primary caregiver support programs.

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

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Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

2013-03-27

Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically

The Relationship Between Caregiving and Mortality After Accounting for Time-Varying Caregiver Status and Addressing the Healthy Caregiver Hypothesis.

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Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M

2015-09-01

Previous studies have shown inconsistent associations between caregiving and mortality. This may be due to analyzing caregiver status at baseline only, and that better health is probably related to taking on caregiving responsibilities and continuing in that role. The latter is termed The Healthy Caregiver Hypothesis, similar to the Healthy Worker Effect in occupational epidemiology. We applied common approaches from occupational epidemiology to evaluate the association between caregiving and mortality, including treating caregiving as time-varying and lagging exposure up to 5 years. Caregiving status among 1,068 women (baseline mean age = 81.0 years; 35% caregivers) participating in the Caregiver-Study of Osteoporotic Fractures study was assessed at five interviews conducted between 1999 and 2009. Mortality was determined through January 2012. Cox proportional hazards models were used to estimate adjusted hazard ratios and 95% confidence intervals adjusted for sociodemographics, perceived stress, and functional limitations. A total of 483 participants died during follow-up (38.8% and 48.7% of baseline caregivers and noncaregivers, respectively). Using baseline caregiving status, the association with mortality was 0.77, 0.62-0.95. Models of time-varying caregiving status showed a more pronounced reduction in mortality in current caregivers (hazard ratios = 0.54, 0.38-0.75), which diminished with longer lag periods (3-year lag hazard ratio = 0.68, 0.52-0.88, 5-year lag hazard ratios = 0.76, 0.60-0.95). Overall, caregivers had lower mortality rates than noncaregivers in all analyses. These associations were sensitive to the lagged period, indicating that the timing of leaving caregiving does influence this relationship and should be considered in future investigations. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The characteristics and experiences of anticipatory mourning in caregivers of teenagers and young adults.

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Griffith, Rachel; Davies, Kerry; Lavender, Verna

2015-11-01

This article reports a systematic review of literature undertaken to identify characteristics and experiences of anticipatory mourning in caregivers of teenagers and young adults with life-limiting or life-threatening conditions. A comprehensive literature search was conducted using the key words 'anticipatory', 'mourning', 'grief', and synonyms. This review focused on six studies that met inclusion criteria and reported characteristics of anticipatory mourning in caregivers of teenagers and young adults. Characteristics and experiences were sorted into four main themes: symptoms; a sense of loss; caregiver behaviour; and the unique experience of caring for, or losing, a teenager or young adult. The review suggests that there are characteristics and experiences of anticipatory mourning that are unique to caregivers of this age group. The review also suggests that consideration of anticipatory mourning is important in offering holistic care to young adults and their caregivers, and points to the need for further research in this area.

Family Relationships and Psychosocial Dysfunction among Family Caregivers of Patients with Advanced Cancer

DEFF Research Database (Denmark)

Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis

2016-01-01

CONTEXT: Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. OBJECTIVES......: To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. METHODS: Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer...... Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal...

The relationship between social support and anxiety among caregivers of children in HIV-endemic South Africa.

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Casale, Marisa; Wild, Lauren; Cluver, Lucie; Kuo, Caroline

2014-01-01

Caring for children can be a source of joy and fulfilment, but also a source of stress, especially for caregivers living with illness and/or coping with difficult socio-economic conditions. Risks for poor caregiver mental health are especially salient in many parts of southern Africa affected by a generalised HIV-epidemic, high rates of physical illness, difficult livelihood conditions and an increasing number of orphaned and vulnerable children in need of care. Given limited availability and low uptake of formal mental health services in South Africa, the potential protective role of informal community or "social" resources for caregiver populations requires greater attention. To our knowledge, this is the first study to quantitatively assess the relationship between social support and symptomatic anxiety among caregivers of children living in HIV-endemic southern African communities. The data are from household survey interviews with 2477 adult primary caregivers of children aged 10-17 years living in two (urban and rural) resource-deprived HIV-endemic South African communities. Hierarchical logistic regression analysis with interaction terms was conducted to assess whether HIV and other illness were significant stressors for caregiver anxiety, whether social support had main or stress-buffering protective effects on anxiety and whether gender moderated the association between social support and anxiety. Our findings showed significant main effects of social support on caregiver anxiety, but no evidence of stress-buffering effects of support or of gender moderating the support-anxiety relationship. This suggests that social support is a general mental health resource for both male and female caregivers of children in these HIV-endemic communities, regardless of whether they are facing specific stressors related to HIV or other illness. Our results highlight the importance of paying greater attention to the social environment when designing and implementing

Laughter Yoga, Adults Living With Parkinson׳s Disease, and Caregivers: A Pilot Study.

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DeCaro, Debra Swedberg; Constantine Brown, Jodi L

2016-01-01

This study explored outcomes of Laughter Yoga in adults with Parkinson׳s disease (PD) and their caregivers. Laughter has been shown to generally improve mood in physically healthy adults, and specifically in adults with heart disease or cancer, but little research exists regarding the impact of laughter in adults with Parkinson׳s disease. Low mood is frequently a co-morbid condition for adults with Parkinson׳s disease, and can negatively affect their caregivers. Pre-experimental (O1 × O2) pretest-posttest design. Data collection occurred at six unique PD support groups in Southern California. Participants (N = 85) comprised a convenience sample of adults diagnosed with Parkinson׳s disease (n = 47) and accompanying caregivers (n = 38). Subjects participated in a 45-min Laughter Yoga (LY) session conducted by a Certified Laughter Yoga Teacher. This study utilized the Laughter Yoga "How Do You Feel?" (HDYF) form. The form consists of a series of 10 scales labeled "well-being" measures including enthusiasm, energy level, mood, optimism, stress level, level of friendship with group members, level of awareness about breathing, level of muscle relaxation, level of mental relaxation, and ability to laugh without a reason. Paired sample t-tests reveal statistically significant improvements in well-being for adults with PD and their caregivers after attending an LY session. Therapists and other clinicians should consider utilizing this unique technique with adults with PD to address co-morbid low-mood conditions and include caregivers in the LY sessions for support and their own benefit. Copyright © 2016 Elsevier Inc. All rights reserved.

The values and qualities of being a good helper: a qualitative study of adult foster home caregivers for persons with serious mental illness.

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Piat, Myra; Ricard, Nicole; Sabetti, Judith; Beauvais, Louise

2007-11-01

Canadian foster homes for adults with serious mental illness are operated by non-professional caregivers, usually women, whose mandate is to support residents and reintegrate them into the community. While mental health professionals recognize that adult foster homes are an important service for this population, there is little understanding of how caregivers impact on the lives of their residents. This article draws on the findings of a larger study which examined both caregiver and resident perspectives on the helping relationship in adult foster homes. Caregiver perspectives on the values and qualities required to help people living in foster homes are reported. With no pre-set theoretical framework, this qualitative study employed an inductive approach within a naturalistic paradigm. Semi-structured interviews were conducted with 20 caregivers. Data analysis was an ongoing, 2-year process, involving the identification of categories and themes through several distinct stages. The study included Montreal adult foster homes (n=242) for persons with serious mental illness, supervised by two university-affiliated psychiatric hospitals. Twenty caregivers, selected according to years of experience and number of residents in the home, were diverse in terms of age, cultural background, family composition, education and occupational background. Caregivers possess a clearly articulated value system, and 21 specific qualities which reflect the attributes of both professional and informal helpers. These values and qualities provide caregivers with a "professional" or "vocational" orientation. A deeply held system of values and qualities is critically important to caregiver effectiveness and job satisfaction. Findings suggest that caregivers are highly motivated, and should be recognized as full participants in the mental health system at both policy and practice levels.

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

Science.gov (United States)

Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study

Directory of Open Access Journals (Sweden)

Wilson Keith G

2011-05-01

Full Text Available Abstract Background Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL. Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL, caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36, caregiver role (negative and positive aspects, relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale. Results Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

The relationships between depression and other outcomes of chronic illness caregiving

Directory of Open Access Journals (Sweden)

Jirovec Mary M

2005-02-01

Full Text Available Abstract Background Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction. Methods The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables. Results Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p Conclusion Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: a longitudinal study.

Science.gov (United States)

Grano, Caterina; Lucidi, Fabio; Violani, Cristiano

2017-07-01

Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.

Women's caregiving and paid work: causal relationships in late midlife.

Science.gov (United States)

Pavalko, E K; Artis, J E

1997-07-01

Care of an ill or disabled family member or friend is disproportionately done by women and typically is done in late midlife. Because this is-also a time in the life course when women's labor force participation peaks, many women faced with caregiving demands have to decide how to balance them with their employment. In this study we use the National Longitudinal Survey (NLS) of Mature Women to examine the causal relationship between employment and caring for an ill or disabled friend or relative over a three-year period. We find that employment does not affect whether or not women start caregiving, but that women who do start are more likely to reduce employment hours or stop work. Thus, the causal relationship between employment and caregiving in late midlife is largely unidirectional, with women reducing hours to meet caregiving demands.

Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

Science.gov (United States)

Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

2009-01-01

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

Reconciling work and family caregiving among adult-child family caregivers of older people with dementia: effects on role strain and depressive symptoms.

Science.gov (United States)

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Yang, Pei-Shan

2011-04-01

This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (β=0.25, Pwork and caregiving roles (β=0.36, Pworking part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (β=0.29, PWork demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. © 2010 Blackwell Publishing Ltd.

Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race.

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Namkung, Eun Ha; Greenberg, Jan S; Mailick, Marsha R

2017-08-01

This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers' well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults With Down Syndrome

OpenAIRE

Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30–53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure activities, with low participation in physical and mentally stimulating leisure activities. Residence and time spent with primary caregiver were assoc...

Characteristics of the relationship that develops from nurse-caregiver communication during telecare.

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Solli, Hilde; Hvalvik, Sigrun; Bjørk, Ida Torunn; Hellesø, Ragnhild

2015-07-01

To explore the relationship between nurses and caregivers using a web camera and web forum as the communication methods. In Norway and other European countries, there is an increased focus on ageing at home, which is aided by technology, as well as formal and informal care. The literature reveals that caregivers endure physical and mental burdens. With computer-mediated communication, such as telecare, it is possible for nurses to provide supportive care to caregivers in their homes. An explorative design using qualitative content analysis. Six nurses and nine caregivers with residential spouses suffering from stroke or dementia were interviewed two times over a six-month period. The nurses responded dynamically to the information they received and helped to empower the individual caregivers and to strengthen the interpersonal relationships between the caregivers. While some participants thought that meeting in a virtual room was close and intimate, others wanted to maintain a certain distance. The participants' altered their roles as the masters and receivers of knowledge and experience; this variation was based on a relationship in which mutual respect for one another and an interest in learning from one another allowed them to work together as partners to demonstrate the system and to follow-up with new caregivers. The flexibility of the service allows the possibility of engaging in a close, or to some extent, a more distant relationship, depending on the participants' attitudes towards using this type of service. Nurses can provide close care, support and information to caregivers who endeavour to master their everyday lives together with their sick spouses. The support seems to help the caregivers cope with their own physical and emotional problems. © 2015 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

Science.gov (United States)

Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.

Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

Science.gov (United States)

Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

2016-12-01

Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.

Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

Science.gov (United States)

Shiba, Koichiro; Kondo, Naoki; Kondo, Katsunori

2016-01-01

Background We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P supports (β = −1.55, P support. Conclusions Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden. PMID:27180934

Dog owner interaction style: the transmission of working models in human/non-human caregiving relationships

OpenAIRE

Taggart, Jill Monica

2011-01-01

A model of parental sensitivity in caregiving informs later romantic relationships and is transmitted in caregiving behaviours to children. Differences in parental caregiving contribute to individual differences in infant attachment style. The owner/dog bond mirrors this relationship as dog careseeking activates owner caregiving. The aim of this thesis was to investigate the role of individual differences in owner caregiving on dog attachment style.The first study defined dog attachment style...

Caregiving decision making by older mothers and adult children: process and expected outcome.

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Cicirelli, Victor G

2006-06-01

Dyadic caregiving decision making was studied in 30 mother-son and 29 mother-daughter pairs (mother's age=65-94 years) who responded to a vignette depicting a caregiving decision situation. The observed decision-making process of mother-child pairs was largely naturalistic, with few alternatives proposed and quick convergence to a decision followed by a postdecision justification; a degree of more rational decision making was seen in some pairs. Among significant findings, adult children, especially sons, dominated the decision process, doing more talking and introducing more alternatives than did their mothers, who played a more subordinate role. Mother-son pairs expected more negative outcomes and greater regrets regarding their decisions than mother-daughter pairs. Closeness of the parent-child relationship influenced the decision-making process, expected outcomes, and regrets. Copyright (c) 2006 APA, all rights reserved.

A review of conceptualisation of expressed emotion in caregivers of older adults with dementia.

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Li, Chao-Yin; Murray, MaryAnne

2015-02-01

To clarify the concept of 'expressed emotion' and its application to caregivers of older adults with dementia. Expressed emotion has been a useful construct for understanding the quality of family relationships affecting patients with mental illness and their caregivers. However, this concept has been developed without precisely defining 'expressed emotion' as it pertains to dementia patients. Clarity regarding expressed emotion will enable nurses to apply knowledge of expressed emotion and provide important information for the development of new clinical interventions for this specific population. Integrative review. A review of literature on expressed emotion by caregivers of older adults with dementia. The inclusion criteria were: (1) published in English or Chinese during 1970-2012; (2) included both research and theoretical review articles on expressed emotion in nursing and other disciplines such as psychology, psychiatry and sociology. Initially, 236 articles were screened, and finally, 32 articles were evaluated for this review. Emotional expression and expressed emotion were discussed to clarify the distinctions and address overlap between these two similar terms. In addition, expressed emotion was examined further from three different aspects: trait or state, social control and cross-cultural. Finally, the results of reviewed papers for expressed emotion on dementia patients were explored and synthesised. A conceptual definition and a theoretical framework for the concept of expressed emotion are urgently needed to further our understanding of this critical phenomenon. With increasing attention to caregiving for patients with dementia, including the concept of expressed emotion in the research of this field may accelerate understanding of the importance of the family dynamics in advanced ageing caregiving. The expressed emotion concept could guide much of current clinical practice and help professional nurses understand the family's experience and

Brothers and Sisters of Adults with Mental Retardation: Gendered Nature of the Sibling Relationship.

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Orsmond, Gael I.; Seltzer, Marsha Mailick

2000-01-01

Differences and similarities between 245 brothers and sisters of adults with mental retardation in the sibling relationship were examined. Sisters scored higher in the caregiving, companionship, and positive affect aspects of the sibling relationship. Sibling involvement increased over time, but was dependent upon changes in maternal health.…

Psychological features and quality of life in 50 adult patients with epilepsy and their caregivers from the Lecco epilepsy center, Italy.

Science.gov (United States)

Petruzzi, Alessandra; Rigamonti, Andrea; Finocchiaro, Claudia Yvonne; Borelli, Paolo; Lamperti, Elena; Silvani, Antonio; Regazzoni, Rossana; Stanzani, Lorenzo; Salmaggi, Andrea

2017-06-01

Epilepsy is one of the most common neurological disorders. To the best of our knowledge, in Italy, the relationship between patients' and caregivers' psychological state has rarely been analyzed. Thus, we sought to evaluate both the psychological state of patients with epilepsy and that of their caregivers and the interrelationship between them. We also assessed the existing relation between psychological features and some clinical and demographic information, such as number of antiepileptic drugs (AEDs), epilepsy duration and education level of patients and their caregivers. We enrolled in the study 50 consecutive adult patients attending the epilepsy clinic of "A. Manzoni" Hospital and their caregivers. Both patients and their caregivers were administered Hospital Anxiety and Depression Scale (HADS) and 36-item Short-Form Health Survey (SF-36). Anxiety, depression and quality of life values of both patients and their caregivers did not differ significantly from the normative samples. No statistically significant correlation between epilepsy duration and patients' and caregivers' psychological features was found. Patients which took more than one AED reported lower values of "Vitality" (p epilepsy may have an impact on the psychological state of adult patients with epilepsy and their caregivers, our results highlight the role of multidimensional determinants, including stigma. Further studies are needed to identify the factors related to epilepsy, patients, caregivers, treatments, and the environment that may be modifiable in order to improve self-perceived QoL. Copyright © 2017 Elsevier Inc. All rights reserved.

Social support and subjective burden in caregivers of adults and older adults: A meta-analysis

OpenAIRE

del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A.; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J.

2018-01-01

Background Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. Objective The purpose of this review is to analyse the relationship of perceived and received social support with subjective...

Justifications for caregiving in white, Asian American, and native Hawaiian grandparents raising grandchildren.

Science.gov (United States)

Yancura, Loriena A

2013-01-01

Race has been found to predict justifications for caregiving in family caregivers for older adults. However, little is known about this relationship in another type of family caregiver, Grandparents Raising Grandchildren (GRG). This study examined relationships between race and justifications for caregiving in Asian American, Native Hawaiian, and White GRG. A sample of 259 GRG registered as students' primary caregivers with a public school system completed a modified version of the 10-item Cultural Justifications for Caregiving (CJCG) scale. CJCG items did not load onto a single analytic factor. Two factors, custom and responsibility, emerged. Race was predictive of custom, with Native Hawaiian GRG having significantly higher scores than White or Asian American GRG. Native Hawaiian GRG also scored higher than Asian American, but not White, GRG on responsibility. Justifications for raising grandchildren appear to differ among groups based on racial identification. Findings elucidate cultural justification for caregiving in understudied GRG populations and suggest that justifications for caregiving are configured differently in GRG and family caregivers for older adults. Future studies should examine justifications for caregiving in GRG of other races.

Conceptual challenges in the study of caregiver-care recipient relationships.

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Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth

2008-01-01

In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults with Down Syndrome

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Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley, T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30-53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure…

Post-traumatic stress disorder symptoms in family caregivers of adult patients with acute leukemia from a dyadic perspective.

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Jia, Mutian; Li, Jie; Chen, Chunyan; Cao, Fenglin

2015-12-01

Acute leukemia is a fatal disease in adults that not only affects the patients who suffer from it but also their family caregivers. No studies have investigated post-traumatic stress disorder symptoms (PTSS) in family caregivers of adult patients with acute leukemia using a matched sample. The current study examined PTSS in adult patients with acute leukemia and their family caregivers and investigated the factors associated with caregivers' PTSS. A total of 163 patient-caregiver dyads completed questionnaires assessing their PTSS, psychological resilience, and perceived social support. Hierarchical linear regression was used to explore the related factors of caregivers' PTSS. More caregivers than patients met caseness criteria for PTSS (36.8% vs. 18.4%, p caregivers, being more closely related to the patients (e.g., spouses and parents), having patients with higher PTSS and having lower psychological resilience were independently associated with more severe PTSS. Caregivers of acute leukemia patients had significantly more severe PTSS than did their patients. This study is the first to investigate PTSS among family caregivers of adult patients with acute leukemia and its related factors in a matched sample. More attention should be paid to the caregivers of patients with acute leukemia to minimize their PTSS and thus improve mental health of caregivers and reduce potential negative consequences for the patients themselves. Copyright © 2015 John Wiley & Sons, Ltd.

Social relationships among family caregivers: a cross-cultural comparison between Mexican Americans and non-Hispanic White caregivers.

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Phillips, Linda R; Crist, Janice

2008-10-01

Sometimes, clinicians assume caregivers in cultural groups believed to have large social networks and strong social support need little intervention from health professionals. This longitudinal study tests five hypotheses about the social relationships of Mexican American compared to non-Hispanic White caregivers and whether negative changes in social support affect perceived health. The sample includes 66 Mexican American and 92 non-Hispanic White caregivers. Findings show that social networks and social support are similar at baseline and similarly stable for 1 year. Negative changes in social support are correlated with poorer health perceptions. Findings underscore the importance of designing interventions that are culturally competent based on what the caregiver is experiencing rather than cultural stereotypes.

Childhood Caregiving Roles, Perceptions of Benefits, and Future Caregiving Intentions among Typically Developing Adult Siblings of Individuals with Autism Spectrum Disorder

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Nuttall, Amy K.; Coberly, Ben; Diesel, Sara J.

2018-01-01

Typically developing siblings (TDS) of individuals with Autism Spectrum Disorder (ASD) frequently serve as caregivers during childhood, known as parentification, and primary caregivers for siblings in adulthood. In order to evaluate mechanisms linking these roles, we surveyed emerging-adult TDS (N = 108) about childhood parentification roles…

Preparing Family Caregivers to Recognize Delirium Symptoms in Older Adults After Elective Hip or Knee Arthroplasty.

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Bull, Margaret J; Boaz, Lesley; Maadooliat, Mehdi; Hagle, Mary E; Gettrust, Lynn; Greene, Maureen T; Holmes, Sue Baird; Saczynski, Jane S

2017-01-01

To test the feasibility of a telephone-based intervention that prepares family caregivers to recognize delirium symptoms and how to communicate their observations to healthcare providers. Mixed-method, pre-post quasi-experimental design. A Midwest Veterans Affairs Medical Center and a nonprofit health system. Forty-one family caregiver-older adult dyads provided consent; 34 completed the intervention. Four telephone-based education modules using vignettes were completed during the 3 weeks before the older adult's hospital admission for elective hip or knee replacement. Each module required 20 to 30 minutes. Interviews were conducted before the intervention and 2 weeks and 2 months after the older adult's hospitalization. A researcher completed the Confusion Assessment Method (CAM) and a family caregiver completed the Family Version of the Confusion Assessment Method (FAM-CAM) 2 days after surgery to assess the older adults for delirium symptoms. Family caregivers' knowledge of delirium symptoms improved significantly from before the intervention to 2 weeks after the intervention and was maintained after the older adult's hospitalization. They also were able to recognize the presence and absence of delirium symptoms in the vignettes included in the intervention and in the older adult after surgery. In 94% of the cases, the family caregiver rating on the FAM-CAM approximately 2 days after the older adult's surgery agreed with the researcher rating on the CAM. Family caregivers expressed satisfaction with the intervention and stated that the information was helpful. Delivery of a telephone-based intervention appears feasible. All family caregivers who began the program completed the four education modules. Future studies evaluating the effectiveness of the educational program should include a control group. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability.

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Polenick, Courtney A; DePasquale, Nicole

2018-01-08

Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

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Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie; Drentea, Patricia

2018-04-01

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

Family caregiving for older adults : gendered roles and caregiver burden in emigrant households of Kerala, India

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Ugargol, Allen Prabhaker; Bailey, Ajay

2018-01-01

The Indian state of Kerala leads the demographic transition and characteristically showcases emigration of predominantly male adult children, leaving behind parents, spouses and children. When men emigrate, gendered contexts burden women, especially spouses and daughters-in-law, with caregiving

Family Caregiver Uplift and Burden: Associations with Aggressive Behavior in Adults with Intellectual Disability

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Unwin, Gemma; Deb, Shoumitro

2011-01-01

The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…

Maternal Caregiving Strain as a Mediator in the Relationship between Child and Mother Mental Health Problems

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Sales, Esther; Greeno, Catherine; Shear, M. Katherine; Anderson, Carol

2004-01-01

This study examined whether the general stress--caregiver strain--mental health outcome model may be as appropriate for caregivers of minor-age children as it has been for caregivers of adults with chronic illness. The authors examined whether children's behavioral problems are related to mothers' caregiving strains, which then is related to…

Spouses, Adult Children, and Children-in-Law as Caregivers of Older Adults: A Meta-Analytic Comparison

OpenAIRE

Pinquart, Martin; Sörensen, Silvia

2011-01-01

The present meta-analysis integrates the results from 168 empirical studies on differences between caregiving spouses, adult children, and children-in-law. Spouses differ from children and children-in-law significantly with regard to sociodemographic variables; also, they provide more support but report fewer care recipient behavior problems. Spouse caregivers report more depression symptoms, greater financial and physical burden, and lower levels of psychological well-being. Higher levels of...

The Relationship between Training and Mental Health among Caregivers of Individuals with Polytrauma

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Pickett, Treven C.; Wilder Schaaf, Kathryn P.; Taylor, Brent C.; Gravely, Amy; Van Houtven, Courtney Harold; Friedemann-Sánchez, Greta; Griffin, Joan M.

2015-01-01

This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs' Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health's Patient Reported Outcome Measurement Information System (PROMIS) Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training). Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients' emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers' relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed. PMID:26770015

Acculturation level and caregiver outcomes from a randomized intervention trial to enhance caregivers' health: evidence from REACH II.

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Meyer, Oanh L; Liu, Xiaoyan Lucia; Tancredi, Daniel; Ramirez, A Susana; Schulz, Richard; Hinton, Ladson

2018-06-01

Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention. This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress. No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention. Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.

Caregiving: The impact on emotional support for single women.

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Burnley, C S

1987-01-01

Even though filial caregivers are typically daughters rather than sons, examinations of caregiving have not adequately considered the impact of gender and marital status differences on the support systems that mediate the strain of caring. Because of competing demands on time and energy, caregivers make many changes in their personal activities while maintaining work and immediate family responsibilities. The friendships that provide emotional support for singles are perceived as less important than familial relationships. Therefore, the assumption is made that the single adult daughter has less to give up as compared to her married siblings. The parallel emotional support systems of the married and single caregivers go unrecognized. This study of never-married women over age 30 reveals that these caregivers essentially foreclosed social relationships in order to provide care. Copyright © 1987. Published by Elsevier Inc.

Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden.

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Xue, Haihong; Zhai, Junwei; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-03-01

Improving caregivers' positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer's disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. Copyright © 2018 Elsevier B.V. All rights reserved.

The importance of parents and other caregivers to the resilience of high-risk adolescents.

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Ungar, Michael

2004-03-01

Relationships between 43 high-risk adolescents and their caregivers were examined qualitatively. Parents and other formal and informal caregivers such as youth workers and foster parents were found to exert a large influence on the behaviors that bolster mental health among high-risk youth marginalized by poverty, social stigma, personal and physical characteristics, ethnicity, and poor social or academic performance. Participants' accounts of their intergenerational relationships with caregivers showed that teenagers seek close relationships with adults in order to negotiate for powerful self-constructions as resilient. High-risk teens say they want the adults in their lives to serve as an audience in front of whom they can perform the identities they construct both inside and outside their homes. This pattern was evident even among youth who presented as being more peer-than family-oriented. The implications of these findings to interventions with caregivers and teens is discussed.

Relationships between quality of life and family function in caregiver

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Gómez-Marcos Manuel Á

2011-04-01

Full Text Available Abstract Background There are caregivers who see their quality of life (QoL impaired due to the demands of their caregiving tasks, while others manage to adapt and overcome the crises successfully. The influence of the family function in the main caregiver's situation has not been the subject of much evaluation. The aim of this study is to analyse the relationship between the functionality of the family and the QoL of caregivers of dependent relatives. Methods We conducted a cross-sectional study including 153 caregivers. Setting: Two health centers in the city of Salamanca(Spain. Caregiver variables analysed: demographic characteristics, care recipient features; family functionality (Family APGAR-Q and QoL (Ruiz-Baca-Q perceived by the caregiver. Five multiple regressions are performed considering global QoL and each of the four QoL dimensions as dependent variables. The Canonical Correspondence Analysis (CCA was used to study the influence of the family function questionnaire on QoL. Results Family function is the only one of the variables evaluated that presented an association both with global QoL and with each of the four individual dimensions (p Conclusion We find an association between family functionality and the caregiver's QoL. This relation holds for both the global measure of QoL and each of its four individual dimensions.

Stressors and Caregivers' Depression: Multiple Mediators of Self-Efficacy, Social Support, and Problem-Solving Skill.

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Tang, Fengyan; Jang, Heejung; Lingler, Jennifer; Tamres, Lisa K; Erlen, Judith A

2015-01-01

Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss.

Relationships between Caregiver Violence Exposure, Caregiver Depression, and Youth Behavioral Health among Homeless Families

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McGuire-Schwartz, Mandy; Small, Latoya A.; Parker, Gary; Kim, Patricia; McKay, Mary

2015-01-01

Homelessness affects a large and increasing number of families in the United States, and exposure to violence and other potentially traumatic events is common among homeless families. It is important to understand more about this population and, more specifically, about the relationship between youth mental health and caregiver mental health and…

The Relationship between Training and Mental Health among Caregivers of Individuals with Polytrauma

Directory of Open Access Journals (Sweden)

Lillian Flores Stevens

2015-01-01

Full Text Available This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs’ Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health’s Patient Reported Outcome Measurement Information System (PROMIS Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training. Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients’ emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers’ relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed.

Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

Science.gov (United States)

He Leow, Mabel Qi; Wai Chi Chan, Sally

Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden. The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting. Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study. This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies

Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review.

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Ploeg, Jenny; Markle-Reid, Maureen; Valaitis, Ruta; McAiney, Carrie; Duggleby, Wendy; Bartholomew, Amy; Sherifali, Diana

2017-07-28

Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions. The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community. A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention. A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the

Brazilian Children's Behavioural Differentiation between the Mother, Unfamiliar Adults and Professional Caregivers

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Pingault, Jean-Baptiste

2010-01-01

This study took place in two organisations with opposite socio-economic characteristics which gather children (one to four years), their mothers (or nannies), unfamiliar adults and professional caregivers. Pursuant to attachment theory, the children clearly differentiated their mothers from unfamiliar adults according to proximity indicators and…

Cognitive Impairment, Alzheimer's Disease, and Other Dementias in the Lives of Lesbian, Gay, Bisexual and Transgender (LGBT) Older Adults and Their Caregivers: Needs and Competencies.

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Fredriksen-Goldsen, Karen I; Jen, Sarah; Bryan, Amanda E B; Goldsen, Jayn

2018-05-01

Cognitive impairment, Alzheimer's disease, and other dementias are important health concerns for older adults. As a marginalized and growing segment of the older adult population, lesbian, gay, bisexual, and transgender (LGBT) older adults face distinct risk factors related to cognitive impairment and dementias, including social isolation, discrimination, barriers to health care access, limited availability of and support for caregivers, and higher rates of certain chronic illnesses. We examine cognitive impairment and dementias among LGBT older adults, describe their unique risk factors, and outline key competencies for health care and human service providers to ensure culturally relevant care for LGBT older adults experiencing cognitive impairment, Alzheimer's disease, or other dementias, as well as their caregivers, families, and communities. Implications include developing an awareness of the context of LGBT older adults' lives and relationships, the importance of early detection and support, and the development of policies and practices that promote community-level advocacy and education.

Conflict with Mothers and Siblings During Caregiving: Differential Costs for Black and White Adult Children.

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Suitor, J Jill; Gilligan, Megan; Rurka, Marissa; Con, Gulcin; Peng, Siyun; Pillemer, Karl

2017-12-16

Family conflict has been found to play a role in caregivers' psychological well-being; however, few studies have considered race differences in the prevalence and consequences of caregiving conflict. In this paper, we use mixed-methods to examine differences in the experiences of conflict among Black and White adult children caring for mothers. Quantitative and qualitative data were collected from 279 adult-child caregivers (213 White; 66 Black). Multilevel modeling revealed that conflict with mothers predicted depressive symptoms among Black, but not White caregivers, whereas there were not statistically significant race differences in the effects of conflict with siblings. However within-model tests showed stronger effects of conflict with mothers than siblings for Black caregivers, and stronger effects of conflict with siblings than mothers for White caregivers. Qualitative data revealed that Black caregivers' conflict with mothers resulted from their inability to meet their mothers' needs, inducing concern and sadness. White children's conflict stemmed from mothers' resistance to unwanted assistance and requests for support that children considered excessive, evoking irritation and frustration. This study highlights ways in which the experiences of caregivers reflect broader patterns of differences between Black and White families in both intergenerational cohesion and health disparities in midlife. © The Author(s) 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Association of Filial Responsibility, Ethnicity, and Acculturation Among Japanese American Family Caregivers of Older Adults.

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Miyawaki, Christina E

2017-03-01

Challenges of filial caregiving practices by 1st-generation immigrants due to differences in caregiving values between their home and host countries are well documented. This study explored the filial responsibility of later generation Japanese American caregivers of older adults. Acculturation and filial responsibility were measured using the Suinn-Lew Asian Self Identity Acculturation scale and Filial Values Index, respectively. A qualitative interview guide was developed using Gordon's assimilation theory, and 21 caregivers ( M age = 68 years, 86% female, seven in each generation) were interviewed. Despite the 3rd-generation caregivers' high acculturation level, their filial responsibility scores remained high. Qualitative interviews also revealed later generation caregivers' strong filial responsibility and continued caregiving involvement. Unexpectedly, caregivers' own future expectancy of care included placement in mainstream residential facilities rather than ethnic-specific settings. Findings point to the need to develop caregiver services that consider later generation caregivers' culture and level of assimilation.

The Impact of Relationship Quality on Health-Related Outcomes in Heart Failure Patients and Informal Family Caregivers: An Integrative Review.

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Hooker, Stephanie A; Grigsby, Megan E; Riegel, Barbara; Bekelman, David B

2015-01-01

Relationships can have positive and negative impacts on health and well-being. Dyadic relationships between heart failure (HF) patients and their informal family caregivers may affect both patient and caregiver outcomes. The aim of this study is to synthesize the literature to date on the associations between HF patient-caregiver relationship quality and communication and patient and caregiver health outcomes. An integrative review of the literature was conducted. Computerized literature searches in Medline, PsycInfo, CINAHL, Web of Science, and EMBASE yielded 13 articles of HF patients and caregivers. Included articles were reviewed and double-coded by 2 independent coders. Included articles measured relationship quality or aspects of communication within an HF patient-caregiver dyad and used both cross-sectional and longitudinal designs. Results of the longest prospective study suggested that better relationship quality between HF patients and their informal family caregivers was related to a reduced risk for mortality in patients. Results of 11 of the 12 other studies were consistent to the reference study, suggesting that better relationship quality and communication were related to reduced mortality, increased health status, less distress, and lower caregiver burden. Relationship quality and communication seem to matter in the health and well-being of both HF patients and their informal family caregivers. More research is needed to elucidate mechanisms and to design effective relationship-focused interventions.

Caregiving Appraisal in Family Caregivers of Older Adults

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Akram Farhadi

2016-04-01

Conclusion: Caregiving appraisal is a multidimensional concept, which has positive and negative aspects. By taking into account all aspects of this concept, one can better understand and ultimately has a more comprehensive assessment of the status of caregivers, and implement effective interventions towards improving the health of this group.

The Relationship between Anxiety and Coping Strategies in Family Caregivers of Patients with Trauma.

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Rahnama, Mozhgan; Shahdadi, Hosien; Bagheri, Somyeh; Moghadam, Mahdieh Poodineh; Absalan, Ahmad

2017-04-01

Traumatic events are of high incidence and affect not only the patient but also their family members, causing psychological problems such as stress and anxiety for caregivers of these patients. Therefore, the application of appropriate coping strategies by them seems necessary in order to promote mental health. To study the relationship of anxiety with coping strategies in family caregivers of trauma patients. The present research was a descriptive-correlational study which was carried out on 127 family caregivers of patients with trauma in intensive care unit, surgery ward and emergency unit of Amir al-Mu'minin Hospital of Zabol, Sistan and Baluchestan Province. The respondents were selected based on the convenience sampling method. Demographics questionnaire, DASS-21, and Coping Strategies questionnaire were used for data collection. The obtained data were statistically analysed using descriptive statistics, Analysis of Variance (ANOVA), t-test, and Pearson correlation coefficient in statistical package for the Social Sciences (SPSS) version 21.0. Based on the results, 89.9% of family caregivers suffer from mild to severe anxiety. The most common type of coping strategy used by the respondents was emotion-focused. The results showed no relationship between anxiety and emotion-centrism, but an inverse relationship was found between problem-centrism and anxiety. The majority of family caregivers had anxiety. Given, the inverse relationship between the level of anxiety and the use of problem-based coping strategy, in addition to identifying and reducing the causes of anxiety in caregivers. It is recommended that appropriate coping strategies should be trained to them.

How Does Culture Shape Roles and Relationships in Taiwanese Family Caregiving for an Adolescent With Cancer?

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Yeh, Li-Chyun; Kellet, Ursula; Henderson, Saras; Chen, Kang-Hua

2015-01-01

Chinese culture plays a significant part in how Taiwanese families view life events. Caregivers envisage themselves as guardians of their children in all facets of family life, including wellness and strive to maintain harmonious relationships within the family. However, it remains unclear what impact caring for an adolescent with cancer has on family roles and relationships in Taiwanese families, nor are the processes for managing change in family roles and relationships associated with caregiving well understood. This study explores the impact of caregiving for an adolescent with cancer on the roles and relationships within Taiwanese families. Seven families were recruited from a medical hospital in Taiwan. Data were collected through qualitative interviews and analyzed following Strauss and Corbin's grounded theory. The core category, underpinned by Chinese culture, proved to be experiencing the broken chain of family life. This was the central issue brought about by 4 consequences for the broken chain of family life. The expression "the broken chain of family life" encapsulates how important Chinese cultural values are in defining caregiver task performance. The findings have implications for Taiwanese families in perceiving, adjusting to, and fulfilling the altered roles and relationships associated with caring for an adolescent with cancer at home. The delivery of exceptional care and services depends on gaining insight into how caregiving influences family roles and relationships. How families failed to manage the process of caregiving provides valuable insight for informing and providing recommendations for services and support.

The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review

DEFF Research Database (Denmark)

Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard

2015-01-01

of participants: Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. Phenomena of interest: How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations......BACKGROUND Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers’ stress and burden......, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. OBJECTIVES To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. INCLUSION CRITERIA Types...

Worry About Caregiving Performance: A Confirmatory Factor Analysis

Directory of Open Access Journals (Sweden)

Ruijie Li

2018-03-01

Full Text Available Recent studies on the Zarit Burden Interview (ZBI support the existence of a unique factor, worry about caregiving performance (WaP, beyond role and personal strain. Our current study aims to confirm the existence of WaP within the multidimensionality of ZBI and to determine if predictors of WaP differ from the role and personal strain. We performed confirmatory factor analysis (CFA on 466 caregiver-patient dyads to compare between one-factor (total score, two-factor (role/personal strain, three-factor (role/personal strain and WaP, and four-factor models (role strain split into two factors. We conducted linear regression analyses to explore the relationships between different ZBI factors with socio-demographic and disease characteristics, and investigated the stage-dependent differences between WaP with role and personal strain by dyadic relationship. The four-factor structure that incorporated WaP and split role strain into two factors yielded the best fit. Linear regression analyses reveal that different variables significantly predict WaP (adult child caregiver and Neuropsychiatric Inventory Questionnaire (NPI-Q severity from role/personal strain (adult child caregiver, instrumental activities of daily living, and NPI-Q distress. Unlike other factors, WaP was significantly endorsed in early cognitive impairment. Among spouses, WaP remained low across Clinical Dementia Rating (CDR stages until a sharp rise in CDR 3; adult child and sibling caregivers experience a gradual rise throughout the stages. Our results affirm the existence of WaP as a unique factor. Future research should explore the potential of WaP as a possible intervention target to improve self-efficacy in the milder stages of burden.

Health Trajectories of Family Caregivers: Associations With Care Transitions and Adult Day Service Use

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Liu, Yin; Kim, Kyungmin; Zarit, Steven H.

2017-01-01

Objective The study examines family caregivers’ health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. Method The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Results Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers’ trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives’ placement. Discussion Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. PMID:25348275

Associations between psychological distress, learning, and memory in spouse caregivers of older adults.

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Mackenzie, Corey S; Wiprzycka, Ursula J; Hasher, Lynn; Goldstein, David

2009-11-01

Family caregivers of older adults experience high levels of chronic stress and psychological distress, which are known to impair cognition. Very little research, however, has assessed the impact of caregiving on key cognitive outcomes such as learning and memory. This study compared 16 spouse caregivers with 16 matched controls using standardized neuropsychological measures of learning, episodic memory, and working memory. Analyses compared groups on these cognitive outcomes and examined whether psychological distress mediated group differences in cognition. Results indicated that caregivers were significantly more distressed than non-caregivers and exhibited deficits in learning, recall of episodic information after short and long delays, and working memory. Furthermore, the majority of group differences in cognitive outcomes were mediated by psychological distress. This study adds to a small body of literature demonstrating impaired cognitive functioning among family caregivers. It also suggests that distress is one of a number of possible underlying mechanisms leading to disruptions in learning and memory in this population.

Strategies for sustaining self used by family caregivers for older adults with dementia.

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Bull, Margaret J

2014-06-01

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.

Factors associated with health-related quality of life among Chinese caregivers of the older adults living in the community: a cross-sectional study

Directory of Open Access Journals (Sweden)

Yang Xiaoshi

2012-11-01

Full Text Available Abstract Background Under the culture of filial piety and due to the Confucianism spirit in China, family caregivers usually undertake the responsibilities of caring for the older adults. They usually suffer from a heavy burden which is believed to impair their mental and physical health. Thus this study aims to describe the health-related quality of life (HRQOL among Chinese caregivers of the older adults living in the community and explore the predictors of caregivers’ HRQOL. Methods A cross-sectional study was conducted through convenience sampling. The study population was composed of 1,144 caregivers of older adults who suffered from one or more types of chronic diseases in 15 communities in 3 eastern cities of China. Family caregivers were interviewed face-to-face using the 36-item Short-Form Health Survey (SF-36 and the ZARIT Caregiver Burden interview (ZBI scales. The Antonovsky's Sense of coherence (SOC scale was also used to measure personal coping capability of the caregivers. Hierarchical multiple regression analysis (HMR was performed to explore the predictors of caregivers’ HRQOL. Results The majority of the caregivers were females (60.0% or adult children (66.5%. Mental QOL was significantly lower than physical QOL. Hierarchical multiple regression analysis showed that Demographic Characteristics of Caregivers, Patients’ Characteristics, and Subjective Caregiver Burden explained most of the total variance of all aspects of HRQOL. While, Objective Caregiving Tasks was only associated with physical QOL. Subjective Caregiver Burden was the strongest predictor of both physical and mental QOL. SOC was also a strong predictor of physical and mental QOL. Conclusions The mental QOL of the caregivers of older adults was disrupted more seriously than physical QOL. Additionally, Subjective Caregiver Burden might decrease caregiver’ health. A decrease in caregiver burden could promote better management of caregiving tasks, and improve

Living With Dementia: An Exploratory Study of Caregiving in a Chinese Family Context.

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Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence

2015-01-01

This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed.

Assessing client-caregiver relationships and the applicability of the 'student-teacher relationship scale' for people with intellectual disabilities

NARCIS (Netherlands)

Roeden, J.M.; Maaskant, M.A.; Koomen, H.M.Y.; Candel, M.J.J.M.; Curfs, L.M.G.

2012-01-01

Improvements in client-caregiver relationships may lead to improvements in the quality of life of clients with intellectual disabilities (ID). For this reason, interventions aimed at influencing these relationships are important. To gain insight into the nature and intention of these relationships

A buberian approach to the co-construction of relationships between professional caregivers and residents in nursing homes

NARCIS (Netherlands)

Westerhof, Gerben Johan; van Vuuren, Hubrecht A.; Brummans, Boris H.J.M.; Custers, Annette F.J.

2014-01-01

This article demonstrates the value of a Buberian approach to relationships between professional caregivers and residents in nursing homes. Extant research on relationships between professional caregivers and residents typically distinguishes between task-centered and person-centered communication

Cognitive Impairment, Alzheimer’s Disease, and Other Dementias in the Lives of Lesbian, Gay, Bisexual and Transgender (LGBT) Older Adults and Their Caregivers: Needs and Competencies

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Fredriksen-Goldsen, Karen I.; Jen, Sarah; Bryan, Amanda E. B.; Goldsen, Jayn

2017-01-01

Cognitive impairment, Alzheimer’s disease, and other dementias are important health concerns for older adults. As a marginalized and growing segment of the older adult population, lesbian, gay, bisexual, and transgender (LGBT) older adults face distinct risk factors related to cognitive impairment and dementias, including social isolation, discrimination, barriers to health care access, limited availability of and support for caregivers, and higher rates of certain chronic illnesses. We examine cognitive impairment and dementias among LGBT older adults, describe their unique risk factors, and outline key competencies for health care and human service providers to ensure culturally relevant care for LGBT older adults experiencing cognitive impairment, Alzheimer’s disease, or other dementias, as well as their caregivers, families, and communities. Implications include developing an awareness of the context of LGBT older adults’ lives and relationships, the importance of early detection and support, and the development of policies and practices that promote community-level advocacy and education. PMID:27729400

The Burden of Dysphagia on Family Caregivers of the Elderly: A Systematic Review

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Ashwini M. Namasivayam-MacDonald

2018-06-01

Full Text Available With the rapid increase in the elderly population, there is a simultaneous increased need for care provided by family caregivers. Research in the field of head and neck cancer has indicated that caring for patients with dysphagia can impact a caregiver’s quality of life. Given that many older adults present with dysphagia, one can assume that their caregivers are equally, if not more greatly, affected. The purpose of this systematic review was to examine all relevant literature regarding the caregiver burden in caregivers of community-dwelling older adults with dysphagia. A review of relevant studies published through April 2018 was conducted using search terms related to dysphagia, caregiver burden, and older adults. The search yielded 2331 unique abstracts. Of the 176 abstracts that underwent full review, four were accepted. All reported an increase in caregiver burden due to presence of dysphagia in care recipients. Worsening feeding-related behaviors were associated with burden, and the use of feeding tubes was more frequently associated with “heavy burden”. The presence of dysphagia in community-dwelling older adults is a factor leading to an increased burden among caregivers. Although aspects of dysphagia play a role in the caregiver burden, the specific reasons for the increased burden are unknown. Clinicians should be aware of dysphagia as a source of the burden, and future studies should further define the relationship between dysphagia and the caregiver burden in order to develop comprehensive approaches to care.

Quality of recipient-caregiver relationship and psychological distress are correlates of self-care agency after lung transplantation.

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DeVito Dabbs, Annette; Terhorst, Lauren; Song, Mi-Kyung; Shellmer, Diana A; Aubrecht, Jill; Connolly, Mary; Dew, Mary Amanda

2013-01-01

Self-care behaviors are crucial for following the complex regimen after lung transplantation, yet little is known about recipients' levels of self-care agency (the capability and willingness to engage in self-care behaviors) and its correlates. We examined levels of self-care agency and recipient characteristics (socio-demographics, psychological distress, quality of relationship with primary lay caregiver, and health locus of control) in 111 recipients. Based on Perceived Self-Care Agency scores, recipients were assigned to either the low- or high-self-care agency comparison group. Characteristics were compared between groups to identify characteristics likely to be associated with lower-self-care agency. Mean (SD) score for self-care agency (scale range, 53-265) was 223.02 (22.46). Recipients with lowest-self-care agency scores reported significantly poorer quality of caregiver relationships (p recipient-caregiver relationship remained significantly associated with self-care agency. Every one-point decrease in the quality of caregiver relationship increased the risk of low-self-care agency by 12%. Recipients with poorer caregiver relationships and greater psychological distress may need additional support to perform the self-care behaviors expected after lung transplantation. © 2012 John Wiley & Sons A/S.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient

DEFF Research Database (Denmark)

Lund, Line; Ross, Lone; Petersen, Morten Aagaard

2014-01-01

BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and t...

Aging Parents of Adults With Disabilities: The Gratifications and Frustrations of Later-Life Caregiving.

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Greenberg, Jan S.; And Others

1993-01-01

Used stress process model to investigate impact of later-life caregiving on 105 mothers of adult children with mental illness and 208 mothers of adult children with mental retardation. Mothers of persons with mental illness reported higher levels of frustrations and lower levels of gratifications. Adult child's behavior problems were strongest…

Like an extended family: Relationships that emerge when older caregivers use written messages to communicate in an ICT-based healthcare service.

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Solli, Hilde; Bjørk, Ida Torunn; Hvalvik, Sigrun; Hellesø, Ragnhild

2018-03-01

To explore the relationships that emerge amongst caregivers of persons with dementia and stroke when caregivers use written messages as their communication tool in a closed information and communication technology (ICT)-based support group. An explorative design with a qualitative approach was used that applied systematic text condensation (STC) to analyse 173 written messages extracted from a web forum. Empathetic, empowering and familiar relationships emerged amongst peers of older caregivers when the caregivers used written messages as their communication tool. The empathetic relationship was characterised by sincerity and openness when the caregivers shared emotions related to caregiving. The empowering relationship reflected a fellowship based on solidarity influenced by a sense of optimism and a willingness to share knowledge to support one another in overcoming challenges. In the familiar relationship, the caregivers were thoughtful and good-humoured with one another and displayed an attitude of consideration towards one another, as in an extended family. The use of computer-mediated communication in health care service will change the context of establishing and maintaining interpersonal relationships. Therefore, greater knowledge regarding how the peers of caregivers interact with one another is vital so nurses may better support and educate ICT-based support groups.

Caregiver Stress and Mental Health: Impact of Caregiving Relationship and Gender.

Science.gov (United States)

Penning, Margaret J; Wu, Zheng

2016-12-01

This study compared the stress and mental health implications of caregiving to a spouse, children, siblings, other family members, friends, and others among middle-aged and older male and female caregivers. Multivariate regression analyses were conducted using 2007 Canadian General Social Survey data collected on a subsample of caregivers aged 45 and older. Our analyses revealed that for women, caring for a spouse or children was more stressful and detrimental to mental health than caring for parents or others. Similarly, for men, caring for a spouse and for children was more stressful than caring for others but did not adversely affect overall mental health. The findings suggest that spousal and child caregiving tend to be more rather than less stressful and detrimental to middle-aged and older caregivers' mental health than is caregiving to most others but that gender differences need to be considered. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender

Directory of Open Access Journals (Sweden)

Phoebe V. Kahn

2016-01-01

Full Text Available Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C. Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51, p<.001. Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80 = −4.37, p<.001 and more burden on the ZBI (t(80 = −2.68, p=.009 compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8 = −2.22, p=.034 and more burden on the ZBI (t(80 = −2.65, p=.010 than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.

Self-efficacy for controlling upsetting thoughts and emotional eating in family caregivers.

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MacDougall, Megan; Steffen, Ann

2017-10-01

Self-efficacy for controlling upsetting thoughts was examined as a predictor of emotional eating by family caregivers of physically and cognitively impaired older adults. Adult women (N = 158) providing healthcare assistance for an older family member completed an online survey about caregiving stressors, depressive symptoms, self-efficacy, and emotional eating. A stress process framework was used as a conceptual model to guide selection of variables predicting emotional eating scores. A hierarchical multiple regression was conducted and the overall model was significant (R 2 = .21, F(4,153) = 10.02, p accounting for IADL, role overload, and depression scores. These findings replicate previous research demonstrating the relationship between managing cognitions about caregiving and behavioral responses to stressors, and point to the importance of addressing cognitive processes in efforts to improve caregiver health behaviors.

Caregivers' resilience is independent from the clinical symptoms of dementia.

Science.gov (United States)

Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

2016-12-01

Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

Resilience as a concept for understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease (COPD): an integrative review.

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Rosa, Francesca; Bagnasco, Annamaria; Aleo, Giuseppe; Kendall, Sally; Sasso, Loredana

2017-04-01

This paper was a report of the synthesis of evidence on examining the origins and definitions of the concept of resilience, investigating its application in chronic illness management and exploring its utility as a means of understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease. Resilience is a concept that is becoming relevant to understanding how individuals and families live with illness, especially long-term conditions. Caregivers of adults with Chronic Obstructive Pulmonary Disease must be able to respond to exacerbations of the condition and may themselves experience cognitive imbalances. Yet, resilience as a way of understanding family caregiving of adults with COPD is little explored. Literature review - integrative review. CINAHL, PubMed, Google Scholar and EBSCO were searched between 1989-2015. The principles of rapid evidence assessment were followed. We identified 376 relevant papers: 20 papers reported the presence of the concept of resilience in family caregivers of chronic diseases patients but only 12 papers reported the presence of the concept of resilience in caregivers of Chronic Obstructive Pulmonary Disease patients and have been included in the synthesis. The term resilience in Chronic Obstructive Pulmonary Disease caregiving is most often understood using a deficit model of health.

Informal Caregivers Assisting People with Multiple Sclerosis

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Huang, Chunfeng

2011-01-01

The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance. PMID:24453723

Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

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Sorrell, Jeanne M

2014-03-01

Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

Stigma, disclosure, and depressive symptoms among informal caregivers of people living with HIV/AIDS.

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Mitchell, Mary M; Knowlton, Amy

2009-08-01

Informal care receipt is associated with better HIV treatment outcomes among patients vulnerable to treatment failure. Yet, informal caregiving can be highly stressful, leading to distress and cessation of caregiving. Research on factors contributing to informal caregivers' psychological distress may advance our understanding of how to improve caregivers' well-being and sustained HIV caregiving for a vulnerable population. We examined relationships among caregiver stigma, disclosure, and depressive symptoms in a cross-sectional sample of 207 informal caregivers of people living with HIV/AIDS (PLWHAs) in Baltimore, Maryland. Caregivers were primarily African American, low-income, urban adults participating in the Action, Resources, and Knowledge (ARK) study (2003-2005), which recruited urban PLWHAs and their main supporters. Results indicated that among caregivers, HIV caregiving-related stigma was associated with more depressive symptoms, while disclosure of caregiving status was associated with fewer symptoms. We also explored the buffering effect of disclosure in the relationship between stigma and depressive symptoms. Results indicated that among those who reported greater stigma, there was a significant decrease in depressive symptoms as the number of disclosures increased. In contrast, participants who indicated lower stigma had consistently fewer depressive symptoms regardless of number of disclosures. These results suggest the need for interventions to address high levels of depressive symptoms among informal HIV caregivers, particularly those who report greater caregiving stigma and less disclosure of their caregiver status. In addition, future research should examine these relationships further using longitudinal data from informal caregivers and their care recipients.

Does Caregiver Behavior Mediate the Relationship Between Cultural Individualism and Infant Pain at 12 Months of Age?

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O'Neill, Monica C; Pillai Riddell, Rebecca; Garfield, Hartley; Greenberg, Saul

2016-12-01

This study aimed to understand the relationship between caregiver culture and infant pain expression at the 12-month immunization and discern if a mechanism subsuming this relationship was the quality of caregiver behaviors (emotional availability). Infants (N = 393) with immunization data at 12 months of age were examined. On the basis of the Development of Infant Acute Pain Responding model, a mediation model was developed to examine how caregiver behaviors mediate the relationship between caregiver heritage culture and infant pain. Culture was operationalized by an objectively derived quantification of caregivers' self-reported heritage culture's individualism. Two mediation models were estimated, examining infant pain expression at 1 and 2 minutes post-needle. Caregivers who self-reported heritage cultures that were more highly individualistic tended to show greater emotional availability, which in turn predicted decreased infant pain expression at 1 and 2 minutes post-needle. The present findings further our understanding of one mechanism by which caregiver culture affects infant acute pain expression. Adding to the literature examining direct relationships between culture and infant immunization pain, this article proposes the quality of caregiver behaviors as a mechanism by which culture affects infant acute pain expression at 12 months of age. Results support the proposed mechanism and inform our understanding of the role of caregiver culture in the infant pain context. Copyright © 2016 American Pain Society. Published by Elsevier Inc. All rights reserved.

Effects on resilience of women family caregivers of adults with serious mental illness: the role of positive cognitions.

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Zauszniewski, Jaclene A; Bekhet, Abir K; Suresky, M Jane

2009-12-01

This study examined the effects of risk and protective factors on resilience in 60 women family members of adults with serious mental illness. Both the risk factors constituting caregiver burden (strain, stigma, client dependence, and family disruption) and protective factors, including eight positive cognitions were found to predict two indicators of resilience: resourcefulness and sense of coherence. The effects of caregiver burden on resourcefulness and sense of coherence were mediated by positive cognitions, lending support to resilience theory and suggesting the need to develop interventions to encourage positive thinking among women caregivers of adults with mental illness.

A Review of Ethnicity, Culture, and Acculturation Among Asian Caregivers of Older Adults (2000-2012).

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Miyawaki, Christina E

2015-02-01

This review identified domains of care experiences among studies of Chinese, Filipino, Japanese, Korean, and Vietnamese caregivers in the United States and Canada between 2000 and 2012. Using a narrative approach, 46 peer-reviewed journal articles were found through electronic databases and references. Considering caregivers' assimilation to host countries, attention was given to their culture, socioeconomic resources, immigrant status, filial responsibility, generation, and acculturation. Three primary domains were identified across subgroups. The caregivers' experiences domain was a strong sense of filial responsibility and its varied effects on caregiving experience; in the cultural values domain, reciprocity, and familism. In the acculturation domain, caregivers' generations influenced their experiences. Because our society is rapidly changing demographically and culturally, studies of older adults and their caregivers that are not only inclusive of all racial/ethnic groups but also sensitive to specific racial/ethnic and cultural subgroup differences are necessary to inform policy and practice.

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders.

Science.gov (United States)

Fianco, Andrea; Sartori, Raffaela D G; Negri, Luca; Lorini, Saverio; Valle, Giovanni; Delle Fave, Antonella

2015-04-01

In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age=50.4; SD=9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers' experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers. Copyright © 2015 Elsevier Ltd. All rights reserved.

Caregiving and travel patterns.

Science.gov (United States)

2013-06-01

This study explored the impact of caregiving for older adults on mobility and travel : patterns. Specifically, the focus was on how caregivers managed trips on behalf of : another who receives care. Caregiving is becoming increasingly common as the :...

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

Directory of Open Access Journals (Sweden)

Christian J. Hendriksz MD

2014-07-01

Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

Variances in family carers' quality of life based on selected relationship and caregiving indicators: A quantitative secondary analysis.

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Naef, Rahel; Hediger, Hannele; Imhof, Lorenz; Mahrer-Imhof, Romy

2017-06-01

To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well-being. However, factors that constitute family carers' experience and explain variances are less well understood. A secondary data analysis using cross-sectional data from a controlled randomised trial with community-dwelling people 80 years or older and their families. A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two-step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Two family carer groups were identified. The low-intensity caregiver group (57% of carers) reported high relationship quality and self-perceived ease of caregiving. In contrast, the high-intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self-perceived health compared to the low-intensity caregiver group. A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship. © 2016 John Wiley & Sons Ltd.

Stress associated with caregiving: an examination of the stress process model among Kenyan Luo elders.

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Ice, Gillian H; Sadruddin, Aalyia F A; Vagedes, Amy; Yogo, Jaja; Juma, Elizabeth

2012-06-01

Globally, a growing number of grandparents are caring for their grandchildren. The impact and burden associated with increases in custodial grandparenting, however, may differ by culture. In the United States, the caregiving role has been shown to be a significant source of stress for older adults. In cultures in which grandparents are more commonly involved in the care of young children, however, increasing caregiving roles may not be viewed as stressful. This study examines the impact of caregiving on perceived and physiological measures of stress among 640 Luo elders (60+) in western Kenya, where high HIV prevalence among younger-to-middle aged adults has led to a heavy burden of orphan care. Perceived stress levels were measured using the Luo Perceived Stress Scale (LPSS). Salivary cortisol and casual blood pressure were used as biomarkers of stress. Results were analyzed using random mixed effects models. Overall this study showed that caregivers have higher levels of perceived stress than non-caregivers. For women, household composition, including the number of orphans and adults in the homestead impacted perceived stress. Among men, those who perceived caregiving as burdensome had higher perceived stress. Despite the association between caregiving and perceived stress, there was a minimal relationship between caregiving and the two biomarkers of stress. This may be because caregiving is superimposed onto other stressors and therefore has a minimal physiological impact. These results highlight the importance of local context in determining the impact of the caregiving role on older adult well-being. Copyright © 2012 Elsevier Ltd. All rights reserved.

Parental loss, trusting relationship with current caregivers, and psychosocial adjustment among children affected by AIDS in China.

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Zhao, Junfeng; Li, Xiaoming; Barnett, Douglas; Lin, Xiuyun; Fang, Xiaoyi; Zhao, Guoxiang; Naar-King, Sylvie; Stanton, Bonita

2011-08-01

The objective of this study was to examine the relationship between parental loss, trusting relationship with current caregivers, and psychosocial adjustment among children affected by AIDS in China. In this study, cross-sectional data were collected from 755 AIDS orphans (296 double orphans and 459 single orphans), 466 vulnerable children living with HIV-infected parents, and 404 comparison children in China. The trusting relationship with current caregivers was measured with a 15-item scale (Cronbach's α = 0.84) modified from the Trusting Relationship Questionnaire developed by Mustillo et al. in 2005 (Quality of relationships between youth and community service providers: Reliability and validity of the trusting relationship questionnaire. Journal of Child and Family Studies, 14, 577-590). The psychosocial measures include rule compliance/acting out, anxiety/withdrawal, peer social skills, school interest, depressive symptoms, loneliness, self-esteem, future expectation, hopefulness about future, and perceived control over the future. Group mean comparisons using analysis of variance suggested a significant association (p anxiety and depression. These associations remained significant in General Linear Model analysis, controlling for children's gender, age, family socioeconomic status, orphan status (orphans, vulnerable children, and comparison children), and appropriate interaction terms among factor variables. The findings in the current study support the global literature on the importance of attachment relationship with caregivers in promoting children's psychosocial development. Future prevention intervention efforts to improve AIDS orphans' psychosocial well-being will need to take into consideration the quality of the child's attachment relationships with current caregivers and help their current caregivers to improve the quality of care for these children. Future study is needed to explore the possible reasons for the lack of association between a

[Impact of the positive appraisal of care on quality of life, purpose in life, and will to continue care among Japanese family caregivers of older adults: analysis by kinship type].

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Yamamoto-Mitani, Noriko; Ishigaki, Kazuko; Kuniyoshi, Midori; Kawahara-Maekawa, Noriko; Hasegawa, Kiyomi; Hayashi, Kunihiko; Sugishita, Chieko

2002-07-01

The impact of positive appraisal of care (PAC) on the caregiver's quality of life (QL), sense of purpose in life (sense of ikigai) and will to continue care was examined. Data were collected from 322 Japanese family caregivers of older adults who were using visiting nursing services through 21 facilities in the Tokyo metropolitan area, and the prefectures of Shizuoka, Mie and Okinawa. The data were grouped by kinship type (husband or son, wife, daughter or daughter-in-law) and analyzed separately. From the multiple regression and logistic regression analyses, the following results were derived: 1) The PAC was not related to the physical QL regardless of the relationship type; 2) The relationship depended upon the relationship type: only the PAC was related to the mental QL among husband and son caregivers, both the PAC and the negative appraisal of care (NAC) were important among wives, only the NAC among daughters, and none of them among daughters-in-law; 3) Both the PAC and NAC were related to the sense of ikigai in all caregiver types except among husband and son caregivers, which showed no relationship between the NAC and sense of ikigai; 4) Both the PAC and NAC were related to will to continue care among son and husband caregivers, whereas only the PAC was among wives and daughters-in-law. Only the NAC was related among daughters. However, the difference across kinship type seems minimal for will to continue care. Understanding the PAC among family caregivers may be important in order to better assist them to improve their mental QL or sense of ikigai as well as to predict their continuation of caregiving at home. The impact of PAC varies depending on the kinship type, and it should be assessed separately with reference to this pariable to develop plans for appropriate assistance.

Worry about not having a caregiver and depressive symptoms among widowed older adults in China: the role of family support.

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Xu, Ling; Li, Yawen; Min, Joohong; Chi, Iris

2017-08-01

Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support. Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support. Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms. Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.

Relationship Between Emotions, Emotion Regulation, and Well-Being of Professional Caregivers of People With Dementia.

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Bassal, Catherine; Czellar, Judith; Kaiser, Susanne; Dan-Glauser, Elise S

2016-05-01

So far, limited research has been carried out to better understand the interplay between the emotions, the use of emotion regulation strategies, and the well-being of professional caregivers of People with Dementia (PwD). This pilot study (N = 43 professional caregivers) aimed to (1) describe the type and frequency of emotions experienced at work; (2) analyze the associations between experienced emotions, emotion regulation strategies, and well-being; and (3) test whether the use of specific emotion regulation strategies moderates the relationship between experienced emotions and emotional exhaustion. In the challenging context of professionally caring for PwD, results suggest that (1) caregivers experience positive emotions more frequently than negative emotions; (2) caregivers using relatively inappropriate regulation strategies are more likely to experience negative emotions, less likely to experience positive emotions, and have poorer physical and mental health; and (3) expressive suppression significantly moderates the relationship between positive experienced emotions and emotional exhaustion. © The Author(s) 2015.

The Development of Father-Child Attachment: Associations between Adult Attachment Representations, Recollections of Childhood Experiences and Caregiving

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McFarland-Piazza, Laura; Hazen, Nancy; Jacobvitz, Deborah; Boyd-Soisson, Erin

2012-01-01

The association between fathers' adult attachment representations and their recollections of childhood experiences with their caregiving quality with their eight-month-old infants and with father-infant attachment classification was examined in a longitudinal study of 117 fathers and their infants. Sensitive caregiving was related to…

Identifying Sociodemographic Characteristics Associated With Burden Among Caregivers of the Urban Homebound

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Ania Wajnberg MD

2016-09-01

Full Text Available Limited research has explored whether the burden associated with caring for homebound patients varies across racial groups or by relationship status. We examined these variations for this vulnerable population. Patients self-identified informal caregivers and caregiver burden/depression were assessed using the Zarit Caregiver Burden Scale and the Center for Epidemiologic Studies–Depression scale (CES-D. Forty-nine informal caregivers completed the interview. Mean age was 58 ( SD = 14, 78% were female, 37% Black, 35% Hispanic, and 46% had completed high school. Over 60% of caregivers had moderate or severe caregiver burden and 30% had significant depression. White caregivers had greater burden than Black and Hispanic caregivers ( p = .02. Mean caregiver burden was higher among spouse/partner caregivers, versus those who identified as children or other family or friends ( p = .004. Additional research is needed to better understand the experience of racial and ethnic minorities and spouses in providing informal care to homebound adults.

More caregiving, less working: caregiving roles and gender difference.

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Lee, Yeonjung; Tang, Fengyan

2015-06-01

This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

Recruitment of Older Adult Patient-Caregiver Dyads for an Online Caregiver Resource Program: Lessons Learned.

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Nahm, Eun-Shim; Orwig, Denise; Resnick, Barbara; Magaziner, Jay; Bellantoni, Michele; Sterling, Robert

2012-01-12

Hip fracture is a significant health problem for older adults and generally requires surgery followed by intensive rehabilitation. Informal caregivers (CGs) can provide vital assistance to older adults recovering from hip fracture. Caregiving is a dyadic process that affects both CGs and care recipients (CRs). In a feasibility study, we assessed the effects of using a theory-based online hip fracture resource program for CGs on both CGs and CRs. In this article, we discuss our recruitment process and the lessons learned. Participants were recruited from six acute hospitals, and CGs used the online resource program for 8 weeks. A total of 256 hip fracture patients were screened, and 164 CRs were ineligible. CG screening was initiated when CRs were determined to be eligible. Among 41 eligible dyads, 36 dyads were recruited. Several challenges to the recruitment of these dyads for online studies were identified, including a low number of eligible dyads in certain hospitals and difficulty recruiting both the CR and the CG during the short hospital stay. Field nurses often had to make multiple trips to the hospital to meet with both the CR and the CG. Thus, when a subject unit is a dyad recruited from acute settings, the resources required for the recruitment may be more than doubled. These challenges could be successfully alleviated with careful planning, competent field staff members, collaboration with hospital staff members, and efficient field operations.

The burden of family caregiving in the United States: work productivity, health care resource utilization, and mental health among employed adults

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Hopps M

2017-12-01

Full Text Available Markay Hopps, Laura Iadeluca, Margaret McDonald, Geoffrey T MakinsonPfizer Inc., New York, NY, USA Background: Family caregiving is an increasingly important component of care for patients and the elderly. Objective: The aim of this study is to characterize the burden of family caregiving among employed adults. Methods: Employed adults (≥18 years from the 2013 US National Health and Wellness Survey (NHWS were classified as family caregivers if they reported currently caring for at least one adult relative. Chi-square tests and one-way analyses of variance assessed whether employed caregivers, weighted to the US population, differed from employed non-caregivers on behavioral characteristics, workplace productivity, and health care resource utilization. Results: Eight million workers were family caregivers in the United States, more often female than male (51% vs. 49%, P < 0.05, and 53% were between 40 and 64 years of age. Eighteen percent of caregivers were Hispanic compared with 15% of non-caregivers (P < 0.05. Similar behavioral characteristics between caregivers and non-caregivers included daily alcohol consumption (6% vs. 5% and lack of vigorous exercise (25% vs. 29%, but caregivers had a higher prevalence of smoking (26% vs. 19%, P < 0.05. Caregivers reported a higher mean percentage of work time missed (8% vs. 4%, P < 0.05 and greater productivity impairment (24% vs. 14%, P < 0.05. Some form of depression was reported by 53% of caregivers compared with 32% of non-caregivers (P < 0.05, and more caregivers had self-reported insomnia than non-caregivers (46% vs. 37%, P < 0.05. The number of self-reported diagnosed comorbidities was higher among caregivers compared with that of non-caregivers (5.0 vs. 3.1, P < 0.05, as was the mean number of outpatient visits in the previous 6 months (4.1 vs. 2.7, P < 0.05. Conclusion: Family caregiving is associated with a multidimensional burden that impacts caregivers and has implications for

Caregiving Styles: A Cognitive and Behavioral Typology Associated with Dementia Family Caregiving

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Corcoran, Mary A.

2011-01-01

Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted.…

Avoidant coping partially mediates the relationship between patient problem behaviors and depressive symptoms in spousal Alzheimer caregivers.

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Mausbach, Brent T; Aschbacher, Kirstin; Patterson, Thomas L; Ancoli-Israel, Sonia; von Känel, Roland; Mills, Paul J; Dimsdale, Joel E; Grant, Igor

2006-04-01

Caring for a loved one with Alzheimer disease is a highly stressful experience that is associated with significant depressive symptoms. Previous studies indicate a positive association between problem behaviors in patients with Alzheimer disease (e.g., repeating questions, restlessness, and agitation) and depressive symptoms in their caregivers. Moreover, the extant literature indicates a robust negative relationship between escape-avoidance coping (i.e., avoiding people, wishing the situation would go away) and psychiatric well-being. The purpose of this study was to test a mediational model of the associations between patient problem behaviors, escape-avoidance coping, and depressive symptoms in Alzheimer caregivers. Ninety-five spousal caregivers (mean age: 72 years) completed measures assessing their loved ones' frequency of problem behaviors, escape-avoidance coping, and depressive symptoms. A mediational model was tested to determine if escape-avoidant coping partially mediated the relationship between patient problem behaviors and caregiver depressive symptoms. Patient problem behaviors were positively associated with escape-avoidance coping (beta = 0.38, p avoidance coping was positively associated with depressive symptoms (beta = 0.33, p avoidance coping. Sobel's test confirmed that escape-avoidance coping significantly mediated the relationship between problem behaviors and depressive symptoms (z = 2.07, p avoidance coping partially mediates the association between patient problem behaviors and depressive symptoms among elderly caregivers of spouses with dementia. This finding provides a specific target for psychosocial interventions for caregivers.

A Buberian approach to the co-construction of relationships between professional caregivers and residents in nursing homes.

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Westerhof, Gerben J; van Vuuren, Mark; Brummans, Boris H J M; Custers, Annette F J

2014-06-01

This article demonstrates the value of a Buberian approach to relationships between professional caregivers and residents in nursing homes. Extant research on relationships between professional caregivers and residents typically distinguishes between task-centered and person-centered communication yet tends to privilege either the perspective of professionals or residents. To address this issue, we develop an approach that addresses the co-construction of I-It and I-Thou relationships, based on Martin Buber's social existentialist philosophy. In turn, we show the merit of this approach by using it to analyze interactional data from an observational study on morning care in Dutch nursing homes. As these examples illustrate, our analytical perspective is useful because it highlights how different caregiver-resident relationships are co-created and unfold over time. Thus, by revealing how these relationships are worked out in everyday interactions through subtle shifts between task-centered and person-centered communicative practices, this article offers important insights for improving the quality of care in nursing homes.

Social support for diabetes illness management: supporting adolescents and caregivers.

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Idalski Carcone, April; Ellis, Deborah A; Weisz, Arlene; Naar-King, Sylvie

2011-10-01

The aim of this research study was to examine the relationship between 4 sources of social support (support for the adolescent from family, support for the adolescent from friends, support for the caregiver from another adult, and support to the family from the health care provider) and adolescents' diabetes outcomes (illness management behavior and health status) using a diverse sample of urban adolescents. One hundred forty-one adolescents with insulin-managed diabetes and their primary caregivers completed questionnaires assessing social support and illness management behavior. Glucose meters were downloaded and hemoglobin A1c assays were obtained. Structural equation modeling was used to test a model social support informed by social ecological theory. The results of the structural equation modeling indicated that support for the caregiver from another adult was directly and positively related to support for the adolescent from family and indirectly related to better illness management. Support for the adolescent from family was directly related to better diabetes management and, through better management, to better diabetes health. Support to the family from the health care provider was not related to support for the adolescent and support to the adolescent from friends was not related to illness management, as hypothesized. This study identifies a novel target for social support intervention to improve adolescents' illness management behavior-the caregivers of adolescents with diabetes. By enhancing the social support caregivers receive from other adults in their lives, caregivers' ability to support their adolescent children with diabetes might also be improved which, in turn, improves adolescents' illness outcomes.

Validity and reliability of the Family Empowerment Scale for caregivers of adults with mental health issues.

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Kageyama, M; Nakamura, Y; Kobayashi, S; Yokoyama, K

2016-10-01

WHAT IS KNOWN ON THE SUBJECT?: Empowerment of family caregivers of adults with mental health issues has received increasing attention among mental health nurses in Japan and has been recognized as a new goal of family interventions. The Family Empowerment Scale (FES) was originally developed to measure the empowerment status of parents of children with emotional disorders. However, it was later applied to broader health issues. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: We developed a Japanese version of the FES for family caregivers of adults with mental health issues (FES-AMJ) and examined the validity and reliability among parents. Results showed that the FES-AMJ had acceptable concurrent validity and reliability; however, insufficient construct validity was found, especially for the subscale regarding the service system. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Further studies need to modify the scale. Clarification of ideal family empowerment status in the service system through discussion with mental health nurses and family caregivers may be important. Introduction The Family Empowerment Scale (FES) was originally developed for parents of children with emotional disorders. In Japan, family empowerment is gaining increasing attention and may be one goal of nursing interventions. Aim To develop a Japanese version of the FES for family caregivers of adults with mental health issues and to study the validity and reliability of this scale among parents. Method We translated the FES into Japanese and administered this self-report questionnaire to 275 parents. Results The multitrait scaling analysis revealed acceptable convergent validity and insufficient discriminant validity among all subscales. In particular, all items of the Service system subscale had insufficient discriminant and/or convergent validity. Each subscale significantly correlated with the indicator of empowerment. The intraclass correlation coefficients of each subscale were .855-.917. Cronbach

Determinants of Heart Failure Self-Care Maintenance and Management in Patients and Caregivers: A Dyadic Analysis.

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Bidwell, Julie T; Vellone, Ercole; Lyons, Karen S; D'Agostino, Fabio; Riegel, Barbara; Juárez-Vela, Raúl; Hiatt, Shirin O; Alvaro, Rosaria; Lee, Christopher S

2015-10-01

Disease self-management is a critical component of maintaining clinical stability for patients with chronic illness. This is particularly evident in the context of heart failure (HF), which is the leading cause of hospitalization for older adults. HF self-management, commonly known as HF self-care, is often performed with the support of informal caregivers. However, little is known about how a HF dyad manages the patient's care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (daily adherence and symptom monitoring) and management (appropriate recognition and response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 dyads of Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients averaged 76.2 (SD = 10.7) years old, and a slight majority (56.9%) was male, whereas caregivers averaged 57.4 (SD = 14.6) years old, and about half (48.1%) were male. Most caregivers were adult children (48.4%) or spouses (32.7%) of patients. Both patients and caregivers reported low levels of HF maintenance and management behaviors. Significant individual and dyadic determinants of self-care maintenance and self-care management included gender, quality of life, comorbid burden, impaired ADLs, cognition, hospitalizations, HF duration, relationship type, relationship quality, and social support. These comprehensive dyadic models assist in elucidating the complex nature of patient-caregiver relationships and their influence on HF self-care, leading to more effective ways to intervene and optimize outcomes. © 2015 Wiley Periodicals, Inc.

Relationships between family resilience and posttraumatic growth in breast cancer survivors and caregiver burden.

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Liu, Ye; Li, Yuli; Chen, Lijun; Li, Yurong; Qi, Weiye; Yu, Li

2018-04-01

To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74 years (M = 49, SD = 9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β = .28, P Caregiver Burden Interview total score (β = -.28, P resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden. Copyright © 2018 John Wiley & Sons, Ltd.

Positive valence bias and parent-child relationship security moderate the association between early institutional caregiving and internalizing symptoms.

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Vantieghem, Michelle R; Gabard-Durnam, Laurel; Goff, Bonnie; Flannery, Jessica; Humphreys, Kathryn L; Telzer, Eva H; Caldera, Christina; Louie, Jennifer Y; Shapiro, Mor; Bolger, Niall; Tottenham, Nim

2017-05-01

Institutional caregiving is associated with significant deviations from species-expected caregiving, altering the normative sequence of attachment formation and placing children at risk for long-term emotional difficulties. However, little is known about factors that can promote resilience following early institutional caregiving. In the current study, we investigated how adaptations in affective processing (i.e., positive valence bias) and family-level protective factors (i.e., secure parent-child relationships) moderate risk for internalizing symptoms in previously institutionalized (PI) youth. Children and adolescents with and without a history of institutional care performed a laboratory-based affective processing task and self-reported measures of parent-child relationship security. PI youth were more likely than comparison youth to show positive valence biases when interpreting ambiguous facial expressions. Both positive valence bias and parent-child relationship security moderated the association between institutional care and parent-reported internalizing symptoms, such that greater positive valence bias and more secure parent-child relationships predicted fewer symptoms in PI youth. However, when both factors were tested concurrently, parent-child relationship security more strongly moderated the link between PI status and internalizing symptoms. These findings suggest that both individual-level adaptations in affective processing and family-level factors of secure parent-child relationships may ameliorate risk for internalizing psychopathology following early institutional caregiving.

Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

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Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

2017-12-01

To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

Performance measures, hours of caregiving assistance, and risk of adverse care outcomes among older adult users of Medicaid home and community-based services

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Margaret K Danilovich

2015-11-01

Full Text Available Objectives: This study used validated physical performance measures to examine function, risk of adverse health outcomes, and the relationship with allocated hours of weekly caregiving assistance among older adults receiving home and community-based services through a Medicaid waiver program. Methods: Older adults (n = 42 completed physical performance measures including grip strength, 30-s chair rise, Timed Up and Go, and gait speed. Demographic information including age, gender, and allocated hours of weekly caregiving assistance were also collected. Results: A majority, 72% of females and 86% of males, had weak grip strength, 57% met criteria for fall risk based on their Timed Up and Go score, 83% had lower extremity strength impairments, and 98% were unable to ambulate more than 1.0 m/s. Frailty was prevalent in the sample with 72% of clients meeting Fried’s frailty criteria. The most significant predictors of allocated hours of weekly caregiving assistance approved for clients were race and gait speed. Conclusion: Based on scores on physical performance measures, clients are at risk of falls, hospitalization, and mortality, and scores indicate an urgent need to assess performance in addition to self-reported activities of daily living limitations for this population. Performance measures associated with quantifiable risk of adverse outcomes can be critical indicators for referrals and services needed to enhance the safety and improve care outcomes for homebound older adults.

Sexuality examined through the lens of attachment theory: attachment, caregiving, and sexual satisfaction.

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Péloquin, Katherine; Brassard, Audrey; Lafontaine, Marie-France; Shaver, Phillip R

2014-01-01

Attachment researchers have proposed that the attachment, caregiving, and sexual behavioral systems are interrelated in adult love relationships (Mikulincer & Shaver, 2007 ). This study examined whether aspects of partners' caregiving (proximity, sensitivity, control, compulsive caregiving) mediated the association between their attachment insecurities (anxiety and avoidance) and each other's sexual satisfaction in two samples of committed couples (Study 1: 126 cohabiting or married couples from the general community; Study 2: 55 clinically distressed couples). Partners completed the Experiences in Close Relationships measure (Brennan, Clark, & Shaver, 1998 ), the Caregiving Questionnaire (Kunce & Shaver, 1994 ), and the Global Measure of Sexual Satisfaction (Lawrance & Byers, 1998 ). Path analyses based on the actor-partner interdependence model (APIM) revealed that caregiving proximity mediated the association between low attachment avoidance and partners' sexual satisfaction in distressed and nondistressed couples. Sensitivity mediated this association in nondistressed couples only. Control mediated the association between men's insecurities (attachment-related avoidance and anxiety) and their partners' low sexual satisfaction in nondistressed couples. Attachment anxiety predicted compulsive caregiving, but this caregiving dimension was not a significant mediator. These results are discussed in light of attachment theory and their implications for treating distressed couples.

How Do Formal Caregivers Experience the Sexuality of Older Adults? Beliefs and Attitudes Towards Older Adults’ Sexuality

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Ana Monteiro

2017-08-01

Full Text Available AimThe way caregivers experience the sexuality of older adults has implications to their identity and sexual manifestations. There are few studies that focus on the meaning of caring of older adults, taking into account their sexuality. This study aims to explore the experiences of formal caregivers (FC towards sexuality among older adults, and to obtain a description of their experiences.MethodComplete data were available from six caregivers working in a nursing home. We used a sociodemographic questionnaire and topic interview guide. The data was subjected to content analysis.ResultsThe most prevalent response of the interviewed participants for ‘beliefs about the interest in sexuality’ was ‘health limitations despite the desire’, for ‘observed behaviours related to sexual expression’ was ‘masturbation’, and for ‘reactions/behaviours due to the demonstration of sexual expression was ‘using humour”.ConclusionFuture educational and intervention programs in the institution should take into account our findings to improve their efficacy on discussing these issues and to ultimately promote sexual wellbeing.

Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility.

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Prakash, V; Patel, Anjali M; Hariohm, K; Palisano, Robert J

2017-02-01

Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings. 62 consecutive children and young adults with spastic CP (mean age 6.0 ± 4.5, range 2-21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI). Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 ± 1.3, p < 0.05) than mothers of children who can walk (mean CSI score 4.5 ± 3.0, p < 0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II). Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

Testing an Attribution Model of Caregiving in a Latino Sample: The Roles of Familismo and the Caregiver-Care Recipient Relationship.

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Villalobos, Bianca T; Bridges, Ana J

2016-07-01

This study tests the parameters of Weiner's attribution model of caregiving, which describes how attributions of controllability relate to emotional reactions, which in turn influence willingness to provide support to stigmatized individuals. To date, the model has not been explored in the context of cultural variables, the caregiver-recipient relationship, or types of support. The present study examined the attribution model using a Latino community sample (N = 96) that was presented with vignettes describing an individual with depression. Support was found for the basic attribution model. Familismo was predictive of attributions of controllability and the basic model was predictive of emotional support, but not instrumental support. Participants were more willing to provide instrumental support to a partner, but had more positive affective reactions toward a sibling. The findings provide important information about contextual factors that may motivate Latino caregivers to provide support. © The Author(s) 2015.

Early-Life Parent-Child Relationships and Adult Children's Support of Unpartnered Parents in Later Life.

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Lin, I-Fen; Wu, Hsueh-Sheng

2018-02-08

The proportion of older adults who are unpartnered has increased significantly over the past 25 years. Unpartnered older adults often rely on their adult children for support. Most previous studies have focused on proximal factors associated with adult children's support of their parents, while few have examined distal factors, such as parent-child relationships formed during childhood. This study fills the gap by investigating the direct and indirect associations between early-life parent-child relationships and adult children's upward transfers to unpartnered parents. Data came from two supplements to the Panel Study of Income Dynamics, in which respondents were asked about their relationships with mothers and fathers before age 17 and their transfers of time and money to parents in 2013. Path models were estimated for unpartnered mother-adult child dyads and father-adult child dyads separately. For adult children of unpartnered mothers, psychological closeness has a direct, positive association with time transfer, while physical violence has an indirect association with time transfer through adult children's marital status. For adult children of unpartnered fathers, psychological closeness has neither a direct nor an indirect association with time or money transfer, but physical violence has a direct, negative association with time transfer. Early-life parent-child relationships play a pivotal role in influencing adult children's caregiving behavior, both directly and indirectly. Our findings suggest that by improving their relationships with children early in life, parents may be able to increase the amount of time transfer that they receive in late life. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

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Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M

2012-01-01

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

The contribution of community and family contexts to African American young adults' romantic relationship health: a prospective analysis.

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Kogan, Steven M; Lei, Man-Kit; Grange, Christina R; Simons, Ronald L; Brody, Gene H; Gibbons, Frederick X; Chen, Yi-Fu

2013-06-01

Accumulating evidence suggests that African American men and women experience unique challenges in developing and maintaining stable, satisfying romantic relationships. Extant studies have linked relationship quality among African American couples to contemporaneous risk factors such as economic hardship and racial discrimination. Little research, however, has examined the contextual and intrapersonal processes in late childhood and adolescence that influence romantic relationship health among African American adults. We investigated competence-promoting parenting practices and exposure to community-related stressors in late childhood, and negative relational schemas in adolescence, as predictors of young adult romantic relationship health. Participants were 318 African American young adults (59.4% female) who had provided data at four time points from ages 10-22 years. Structural equation modeling indicated that exposure to community-related stressors and low levels of competence-promoting parenting contributed to negative relational schemas, which were proximal predictors of young adult relationship health. Relational schemas mediated the associations of competence-promoting parenting practices and exposure to community stressors in late childhood with romantic relationship health during young adulthood. Results suggest that enhancing caregiving practices, limiting youths' exposure to community stressors, and modifying relational schemas are important processes to be targeted for interventions designed to enhance African American adults' romantic relationships.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

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Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

Intended Sensitive and Harsh Caregiving Responses to Infant Crying: The Role of Cry Pitch and Perceived Urgency in an Adult Twin Sample

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Out, Dorothee; Pieper, Suzanne; Bakermans-Kranenburg, Marian J.; Zeskind, Philip Sanford; van IJzendoorn, Marinus H.

2010-01-01

Objective: To examine the underlying mechanisms of adults' intended caregiving responses to cry sounds in a behavioral genetic design and to investigate the role of cry pitch and perceived urgency in sensitive and harsh caregiving responses. Methods: The sample consisted of 184 adult twin pairs (18-69 years), including males and females, parents…

Elder care and the impact of caregiver strain on the health of employed caregivers.

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Duxbury, Linda; Higgins, Christopher; Smart, Rob

2011-01-01

As the baby-boom generation moves towards middle age, and their parents toward old age, the number of employees who combine care for an elderly dependant and work will increase in number. These employees are "at risk" of experiencing caregiver strain. This paper advances our understanding of these trends by examining the relationship between caregiver strain and the health of employed caregivers. Our study involved the analysis of data from the 2001 Canadian National Work, Family and Lifestyle Study (N= 31,517). MANOVA was used to determine the relationship between caregiver strain and three situational factors: (1) gender; (2) where the care recipient lives compared to the caregiver; and, (3) family type. Regression was used to determine the relationship between caregiver strain and mental health. We found that caregiver strain depends on gender, family type and location of care. Emotional strain was a significant predictor of mental health. These findings support the need for organizations to expand their thinking around work-life balance to include employees who have eldercare responsibilities.

Positive valence bias and parent-child relationship security moderate the association between early institutional caregiving and internalizing symptoms

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VanTieghem, Michelle R.; Gabard-Durnam, Laurel; Goff, Bonnie; Flannery, Jessica; Humphreys, Kathryn L.; Telzer, Eva H.; Caldera, Christina; Louie, Jennifer Y.; Shapiro, Mor; Bolger, Niall; Tottenham, Nim

2018-01-01

Institutional caregiving is associated with significant deviations from species-expected caregiving, altering the normative sequence of attachment formation and placing children at risk for long-term emotional difficulties. However, little is known about factors that can promote resilience following early institutional caregiving. In the current study, we investigated how adaptations in affective processing (i.e. positive valence bias) and family-level protective factors (i.e. secure parent-child relationships) moderate risk for internalizing symptoms in Previously Institutionalized (PI) youth. Children and adolescents with and without a history of institutional care performed a laboratory-based affective processing task and self-reported measures of parent-child relationship security. PI youth were more likely than comparison youth to show positive valence biases when interpreting ambiguous facial expressions. Both positive valence bias and parent-child relationship security moderated the association between institutional care and parent-reported internalizing symptoms, such that greater positive valence bias and more secure parent-child relationships predicted fewer symptoms in PI youth. However, when both factors were tested concurrently, parent-child relationship security more strongly moderated the link between PI status and internalizing symptoms. These findings suggest that both individual-level adaptations in affective processing and family-level factors of secure parent-child relationships may ameliorate risk for internalizing psychopathology following early institutional caregiving. PMID:28401841

Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands.

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Oldenkamp, Marloes; Bültmann, Ute; Wittek, Rafael P M; Stolk, Ronald P; Hagedoorn, Mariët; Smidt, Nynke

2018-01-01

An increasing number of people combine paid work with the provision of informal care for a loved one. This combination of work and care may cause difficulties, necessitating adaptations at work, i.e. work arrangements. The present study explores what types of work arrangements are used by working caregivers, and which caregiver, care and work characteristics are associated with the use of these work arrangements. Within the Lifelines Informal Care Add-on Study (Lifelines ICAS), data on 965 Dutch informal caregivers in the North of the Netherlands were collected between May 2013 and July 2014 (response rate 48%), and data on 333 working adult-child caregivers (aged 26-68 years, 82% female) were used in this study. A small majority (56%) of the working caregivers used one or more work arrangement(s): taking time off (41%), individual agreements with supervisor (30%), formal care leave arrangement (13%), and reduction in paid work hours (6%). Logistic regression analyses showed that long working hours (OR 1.06, 95% CI 1.01-1.08), and the experience of more health problems (OR 2.54, 95% CI 1.56-4.05) or a disrupted schedule due to caregiving (OR 2.50, 95% CI 1.66-3.78) increased the chance to have used one or more work arrangements. Lower educated working caregivers were less likely to have used a formal care leave arrangement (tertiary vs. primary education OR 2.75, 95% CI 1.13-6.67; tertiary vs. secondary education OR 1.27, 95% CI 1.27-5.09). Policy makers should inform working caregivers about the availability of the different work arrangements, with specific attention for low educated working caregivers. Employers need to consider a more caregiver-friendly policy, as almost half of the working adult-child caregivers did not use any work arrangement. © 2017 John Wiley & Sons Ltd.

Information-seeking at a caregiving website: a qualitative analysis.

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Kernisan, Leslie P; Sudore, Rebecca L; Knight, Sara J

2010-07-28

The Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of "e-caregivers" and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents. The objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging. From March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?" and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes. Of the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included "health information," "practical caregiving," and "support." Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to

Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience.

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Mulud, Zamzaliza Abdul; McCarthy, Geraldine

2017-02-01

The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n=201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden. Copyright © 2016 Elsevier Inc. All rights reserved.

The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a qualitative systematic review

DEFF Research Database (Denmark)

Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard

Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress...... and burden. It is unclear how support groups can produce a meaningful and optimal outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review...... that through comparison and sharing positive and negative emotions, the members of the support group are able to take on and maintain the role as caregiver....

Stress and social support in caregivers of children with cerebral palsy

Directory of Open Access Journals (Sweden)

Alyne Kalyane Câmara de Oliveira

2013-12-01

Full Text Available In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP, as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregivers, and 25 rehabilitation professionals who care for children in health institutions from the countryside of São Paulo state, Brazil. The following measuring instruments were used: the Gross Motor Function Classification System for Cerebral Palsy, the Lipp’s Inventory of Stress Symptoms in Adults, the Social Support Questionnaire, and a form identifying the participants. Data were analyzed using descriptive and inferential statistics by the following tests: Chi-square, Fisher exact, Mann-Whitney, Kruskal-Wallis, and Odds Ratio. The results showed stress among the participating caregivers (66%, with predominance of the resistance phase (93.9% and psychological symptoms (69.7%, low perceived social support for caregivers, concomitant with an adequate satisfaction with the support received, as well as significant relationships of stress versus social support (p = 0.017 and education level versus social support (p = 0.037. The data allow analysis of the relationship between the variables investigated and about the impact of having a child with CP in the family regarding the physical, emotional and psychological well-being of caregivers, besides providing subsidies to think of strategies at different levels of care for families of children with disabilities.

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

Science.gov (United States)

Scharlach, Andrew E; Gustavson, Kristen; Dal Santo, Teresa S

2007-12-01

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

Science.gov (United States)

Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

2016-09-23

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

Caregiving, perceptions of maternal favoritism, and tension among siblings.

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Suitor, J Jill; Gilligan, Megan; Johnson, Kaitlin; Pillemer, Karl

2014-08-01

Studies of later-life families have revealed that sibling tension often increases in response to parents' need for care. Both theory and research on within-family differences suggest that when parents' health declines, sibling relations may be affected by which children assume care and whether siblings perceive that the parent favors some offspring over others. In the present study, we explore the ways in which these factors shape sibling tension both independently and in combination during caregiving. In this article, we use data collected from 450 adult children nested within 214 later-life families in which the offspring reported that their mothers needed care within 2 years prior to the interview. Multilevel analyses demonstrated that providing care and perceiving favoritism regarding future caregiving were associated with sibling tension following mothers' major health events. Further, the effects of caregiving on sibling tension were greater when perceptions of favoritism were also present. These findings shed new light on the conditions under which adult children are likely to experience high levels of sibling tension during caregiving. Understanding these processes is important because siblings are typically the individuals to whom caregivers are most likely to turn for support when assuming care of older parents, yet these relationships are often a major source of interpersonal stress. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Role of global stress in the health-related quality of life of caregivers: evidence from the Survey of the Health of Wisconsin.

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Litzelman, Kristin; Skinner, Halcyon G; Gangnon, Ronald E; Nieto, F Javier; Malecki, Kristen; Witt, Whitney P

2014-06-01

Informal caregivers play a critical role in the care of individuals who are aging or have disabilities and are at increased risk for poor health outcomes. This study sought to determine whether and to what extent: (1) global stress and health-related quality of life (HRQoL) differed between caregivers and non-caregivers; (2) global stress mediated the relationship between caregiving status and HRQoL; and (3) caregiver strain (i.e., stress attributable to caregiving) was associated with worse HRQoL after accounting for global stress. Cross-sectional data were from the 2008-2010 Survey of the Health of Wisconsin, a representative sample of adults aged 21-74 years. Participants (n = 1,364) completed questionnaires about caregiving status, sociodemographics, global stress, and HRQoL. Staged generalized additive models assessed the impact of caregiving on HRQoL and the role of caregiver strain and global stress in this relationship. In the last 12 months, 17.2% of the sample reported caregiving. Caregivers reported worse mental HRQoL than non-caregivers (β -1.88, p = 0.02); global stress mediated this relationship (p stress (p stress, rather than caregiving per se, contributes to poor HRQoL among caregivers, above and beyond the effect of caregiving strain. Screening, monitoring, and reducing stress in multiple life domains presents an opportunity to improve HRQoL outcomes for caregivers.

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

Science.gov (United States)

Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

2012-04-01

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

An Exploration of Volition: Caregiver Perceptions of Persons with Dementia

Directory of Open Access Journals (Sweden)

Christine Raber, PhD, OTR/L

2015-01-01

Full Text Available The purpose of this study was to understand what formal caregivers know about the volition of older adults with moderate dementia. A qualitative approach was used at one assisted living facility. Semi-structured interviews were conducted with formal caregivers to gain their perceptions of residents’ volition or motivation for occupation. Volition of resident participants was assessed using the Volitional Questionnaire (VQ. Caregiver interviews and resident VQ’s were analyzed using van Manen’s phenomenological approach to examine their congruence with regard to the volitional abilities of residents. Thematic analysis yielded two broad themes: (a Caregivers possess varying layers of insight regarding the volitional abilities of the older adults with dementia, and (b caregivers develop a script regarding the volitional abilities of the older adults with dementia. Caregivers possess knowledge about volitional abilities of older adults with dementia. Further research is needed to understand how these perceptions affect their care-giving behaviors.

Caregiving burden and its determinants in Polish caregivers of stroke survivors.

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Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

2014-10-27

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

Attachment and caregiving relationships in families affected by parental incarceration

OpenAIRE

Shlafer, Rebecca J.; Poehlmann, Julie

2010-01-01

This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver–child and incarcerated parent–child relationships, contact with incarcerated parents, and chil...

The relationship between caregivers' subjective social status and asthma symptoms and management for urban children.

Science.gov (United States)

Diep, Judy; Fagnano, Maria; Tremblay, Paul; Halterman, Jill S

2018-03-01

Subjective social status (SSS) is a person's perception of his/her social standing among others. We explored the relationship between caregivers' SSS and asthma symptoms, visits, and medication use among children with persistent asthma. We analyzed baseline data of children (3-10 years) from the SB-TEAM trial in Rochester, NY. Using a modified MacArthur Scale of SSS, caregivers rated themselves "a lot worse off" to "a lot better off" compared to 4 groups (e.g., neighbors). "Low SSS" was defined by a response of "a lot worse off" or "somewhat worse off" for any of the referent groups. Caregivers reported their child's asthma symptoms, healthcare visits for asthma, and medication use. Bivariate and multivariate statistics were used. We found that, of the 230 children enrolled (participation rate:78%, 62% Black, 72% Medicaid), 29% of caregivers had low SSS. Caregivers with low SSS had more depressive symptoms (46% vs. 28%) and lower social support (69.1 vs. 77.7). In multivariable analyses, children of caregivers with low SSS had fewer symptom-free days/2 weeks (5.8 vs. 7.9, p = .01). While they were more likely to have a routine asthma visit in the past year (35% vs. 23%, adjusted p = .03), there was no difference in their use of preventive medication. Many caregivers of children with persistent asthma report low SSS. While children of these caregivers had fewer symptom-free days, they were not more likely to use preventive medications. Efforts are needed to support these caregivers to ensure optimal preventive care and reduce morbidity.

Social factors in informal cancer caregivers: The interrelationships among social stressors, relationship quality, and family functioning in the CanCORS data set.

Science.gov (United States)

Litzelman, Kristin; Kent, Erin E; Rowland, Julia H

2016-01-15

Social and family factors can influence the health outcomes and quality of life of informal caregivers. Little is known about the distribution and correlates of such factors for caregivers of cancer patients. This study sought to fill this gap with data from the Cancer Care Outcomes Research and Surveillance consortium. Lung and colorectal cancer patients nominated an informal caregiver to participate in a caregiving survey. Caregivers reported their sociodemographic and caregiving characteristics, social stress, relationship quality with the patient, and family functioning. Descriptive statistics and Pearson correlations were used to assess the distribution of caregivers' social factors. Multivariable linear regressions assessed the independent correlates of each social factor. Most caregivers reported low to moderate levels of social stress and good relationship quality and family functioning. In multivariable analyses, older age was associated with less social stress and better family functioning but worse relationship quality, with effect sizes (Cohen's d) up to 0.40 (P quality but worse family functioning (effect sizes ≤ 0.16, P quality. Finally, social factors were important independent correlates of one another. The results indicate the importance of personal and caregiving-related characteristics and the broader family context to social factors. Future work is needed to better understand these pathways and assess whether interventions targeting social factors can improve health or quality-of-life outcomes for informal cancer caregivers. Cancer 2016;122:278-286. © 2015 American Cancer Society. Published 2015. This article is a U.S. Government work and is in the public domain in the USA.

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

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Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

2015-01-01

This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

[Relationship of the effectiveness of care management services and burdens of primary family caregivers].

Science.gov (United States)

Lee, Chia-Ling; Liu, Li-Fan; Chen, Shuh-Sin; Lin, Hsiu-Chun

2014-02-01

In Taiwan, long-term care management centers hold primary responsibility for administering long-term care services, assisting with long-term care placements, and sharing the care burden with family caregivers in need. Research into the effectiveness of current care management services and the effectiveness of these services in reducing care burdens remains limited. This study investigates the relationship among care management center service effectiveness, care management personnel, and burdens in relation to the provision of care services from the prospective of caregivers. A purposive sampling method and structured questionnaire survey were used to conduct telephone interviews with 154 home caregivers who had been transferred from care management centers to homecare service centers. Participants expressed overall satisfaction with care management centers and with the services provided by these centers. Satisfaction toward the care managers' professional competence was associated with lower physical burden for caregivers. Participants' psychological and social burdens were associated with overall satisfaction with the care management centers and their satisfaction with the services provided by care managers. The implementation of care management services has improved satisfaction. However, center services remain inadequate to reduce the psychological and social burdens of caregivers. Greater focus on these two aspects will be critical to the successful implementation of the proposed intensive care management model and multiple services intervention in order to meet the complex care needs of home service recipients and their primary caregivers.

Direct and indirect effects of caregiver social support on adolescent psychological outcomes in two South African AIDS-affected communities

Science.gov (United States)

Casale, Marisa; Cluver, Lucie; Crankshaw, Tamaryn; Kuo, Caroline; Lachman, Jamie M.; Wild, Lauren G.

2015-01-01

Caregiver social support has been shown to be protective for caregiver mental health, parenting and child psychosocial outcomes. This is the first known analysis to quantitatively investigate the relationship between caregiver social support and adolescent psychosocial outcomes in HIV-endemic, resource-scarce Southern African communities. A cross-sectional household survey was conducted over 2009-2010 with 2477 South African adolescents aged 10-17 and their adult caregivers (18 years or older) in one urban and one rural community in South Africa’s KwaZulu-Natal province. Adolescent adjustment was assessed using adult caregiver reports of the Strengths and Difficulties questionnaire (SDQ), which measures peer problems, hyperactivity, conduct problems, emotional symptoms and child prosocial behavior. Hierarchical linear regressions and multiple mediation analyses, using bootstrapping procedures, were conducted to assess for: a) direct effects of more caregiver social support on better adolescent psychosocial wellbeing; and b) indirect effects mediated by better parenting and caregiver mental health. Direct associations (psocial support components within parenting interventions but also point to scope for positive intervention on adolescent psychosocial wellbeing through the broader family social network. PMID:25623784

[Patient-caregiver relationship: when illness blogs step in].

Science.gov (United States)

Rondi, Céline; Berney, Alexandre

2014-02-12

The use of social media as a communication tool is rapidly growing in the community, and more specifically in patients, through illness blogs. This has been true for several years in North America, but is becoming a reality in Europe as well. We report here the first results of studies on the putative psychological benefits and risks of illness blogs for their authors. We also explore the possible impact of blogging on the patient-caregiver relationship. Social media are expected to have a growing influence in certain areas of health care. Physicians should therefore stay informed about them, take advantage of their benefits, and anticipate their risks.

Symptoms of depression in non-routine caregivers: the role of caregiver strain and burden.

Science.gov (United States)

Phillips, Anna C; Gallagher, Stephen; Hunt, Kate; Der, Geoff; Carroll, Douglas

2009-11-01

The origins and persistence of psychological morbidity in caregivers are not fully understood. The present analysis examined the relationship between the strain and burden of caregiving and depression and anxiety in a large community sample. Social support and sleep quality were investigated as potential mediators. Cross-sectional and prospective observational study. Individuals caring for someone other than their own child (N=393) were identified from a population of 2,079. Caregiving strain and burden, social support, and sleep quality were assessed. Participants completed the hospital anxiety and depression scale at the same time and 5 years later. Caregiving strain and burden were associated with depression and anxiety symptoms cross-sectionally, and with a worsening of symptoms 5 years later. Sleep quality appeared to mediate the cross-sectional relationships. The demands of caregiving and associated sleep disruption contribute to symptoms of depression and anxiety in caregivers.

A comparative study to identify factors of caregiver burden between baby boomers and post baby boomers: a secondary analysis of a US online caregiver survey.

Science.gov (United States)

Kim, Heejung; Lee, Sangeun; Cheon, Jooyoung; Hong, Soyun; Chang, Mido

2018-05-02

Baby boomers' position in the caregiving context is shifting from caregiver to care recipient as the population ages. While the unique characteristics of baby boomer caregivers are well established in caregiving literature, there is limited information about the next caregiving group after the baby boomers. In this study, the sociodemographic and caregiving-related characteristics of the two generations are compared and specific factors contributing to caregiver burden between baby boomer and post baby boomer caregivers are identified. This cross-sectional and correlational study used secondary analysis of data from the National Alliance for Caregiving and the American Association of Retired Persons. A structured online survey was conducted in 2014 with randomly selected samples (n = 1069) in the United States focusing on sociodemographics, caregiving-related characteristics, and burden of care. Descriptive statistics, multivariate linear regression analyses, and Steiger's Z-test were used to identify group differences in multivariate factors related to caregiver burden in two generational groups. Baby boomers and post baby boomers experienced caregiver burden to a similar degree. Caregiving-related factors are more likely to increase burden of care than sociodemographics in both groups. Caregiving without choice and spending longer hours on caregiving tasks were common factors that increased the burden in both generational groups (all p values baby boomer caregivers reported additional challenges, such as unemployment during caregiving, the dual responsibility of both adult and child care, and a family relationship with the care recipient. Due to the aging population of baby boomers, post baby boomers encounter different challenges related to caregiving burden, which is often considered an additional workload in their life course. Current policy and program tailored to baby boomers should be re-designed to meet the different needs of emerging caregivers

Alzheimer's aggression: influences on caregiver coping and resilience.

Science.gov (United States)

Wilks, Scott E; Little, Kristina G; Gough, Heather R; Spurlock, Wanda J

2011-04-01

This study assessed impact of Alzheimer's patients' aggressive behavior (AD aggression) on caregiver coping strategies (task-, emotion-, and avoidance-focused) and caregiver resilience, and examined whether coping strategy moderated the AD aggression-caregiver resilience relationship. Informal caregivers across Louisiana (N = 419) completed surveys with measures of demographics, AD aggression, caregiver coping strategies, and caregiver resilience. Task-focused coping positively related to resilience. Aggression negatively predicted caregiver resilience. Emotion- and avoidance-focused coping strategies separately interacted with aggression and increased its negative relationship to caregiver resilience. Task-focused coping showed no moderation. Implications for social work professionals are discussed.

Economic expenditures associated with instrumental caregiving roles of adult siblings of persons with severe mental illness.

Science.gov (United States)

Lohrer, Steven P; Lukens, Ellen P; Thorning, Helle

2007-04-01

Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

Science.gov (United States)

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

Death with dignity from the perspective of the surviving family: a survey study among family caregivers of deceased older adults.

Science.gov (United States)

van Gennip, Isis E; Pasman, H Roeline W; Kaspers, Pam J; Oosterveld-Vlug, Mariska G; Willems, Dick L; Deeg, Dorly J H; Onwuteaka-Philipsen, Bregje D

2013-07-01

Death with dignity has been identified as important both to patients and their surviving family. While research results have been published on what patients themselves believe may affect the dignity of their deaths, little is known about what family caregivers consider to be a dignified death. (1) To assess the prevalence of death with dignity in older adults from the perspective of family caregivers, (2) to determine factors that diminish dignity during the dying phase according to family caregivers, and (3) to identify physical, psychosocial, and care factors associated with death with dignity. A survey study with a self-administered questionnaire. Family caregivers of 163 deceased older (>55 years of age) adults ("patients") who had participated in the Longitudinal Aging Study Amsterdam. Of the family caregivers, 69% reported that their relative had died with dignity. Factors associated with a dignified death in a multivariate regression model were patients feeling peaceful and ready to die, absence of anxiety and depressive mood, presence of fatigue, and a clear explanation by the physician of treatment options during the final months of life. The physical and psychosocial condition of the patient in combination with care factors contributed to death with dignity from the perspective of the family caregiver. The patient's state of mind during the last phase of life and clear communication on the part of the physician both seem to be of particular importance.

Family caregiving in schizophrenia: domains and distress

NARCIS (Netherlands)

Schene, A. H.; van Wijngaarden, B.; Koeter, M. W.

1998-01-01

This article focuses on (1) the dimensionality of the caregiving concept; (2) the relation between the identified caregiving dimensions and characteristics of the patient, the caregiver, and their relationship; and (3) the relation between caregiving dimensions and caregiver distress. Findings are

The mediating effect of caregiver burden on the caregivers' quality of life.

Science.gov (United States)

Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

Relationship between first treatment contact and supernatural beliefs in caregivers of patients with schizophrenia.

Science.gov (United States)

Grover, S; Nebhinani, N; Chakrabarti, S; Shah, R; Avasthi, A

2014-06-01

OBJECTIVE. To explore the relationship between attribution of symptoms to supernatural beliefs and first treatment contact in caregivers of patients with schizophrenia attending a tertiary care hospital located in North India. METHODS. A total of 122 caregivers (aged ≥ 18 years, staying with patient ≥ 1 year and involved in patients' care) of consecutive patients with diagnosis of schizophrenia (according to the ICD-10) were evaluated for their supernatural beliefs and first treatment contact. RESULTS. The first treatment contact was a government or private psychiatrist in slightly more than half (53.3%) of the patients, while it was faith healers in 23.8% of the patients. Around three quarters (74.6%) of the caregivers attributed patients' symptoms to ≥ 1 supernatural belief (like sorcery / witchcraft, ghosts, spirit intrusion, divine wrath, planetary influences, evil spirits, and bad deeds in previous life) and more than half (57.4%) of the caregivers attributed patients' symptoms to > 1 supernatural belief. It was observed that those who contacted faith healers for their patients' treatment had significantly higher attribution of the symptoms to supernatural causes. CONCLUSIONS. Supernatural beliefs were common in caregivers of patients with schizophrenia and the majority attributed their patients' symptoms to these beliefs. It signifies an urgent need for mental health literacy in India.

The effectiveness of dyadic interventions for people with dementia and their caregivers.

Science.gov (United States)

Moon, Heehyul; Adams, Kathryn Betts

2013-11-01

The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.

Widening the Generational Circle: Family Caregivers.

Science.gov (United States)

Smith, Bert Kruger

This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

Science.gov (United States)

Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

2018-05-21

This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

Emotion recognition in mild cognitive impairment: relationship to psychosocial disability and caregiver burden.

Science.gov (United States)

McCade, Donna; Savage, Greg; Guastella, Adam; Hickie, Ian B; Lewis, Simon J G; Naismith, Sharon L

2013-09-01

Impaired emotion recognition in dementia is associated with increased patient agitation, behavior management difficulties, and caregiver burden. Emerging evidence supports the presence of very early emotion recognition difficulties in mild cognitive impairment (MCI); however, the relationship between these impairments and psychosocial measures is not yet explored. Emotion recognition abilities of 27 patients with nonamnestic MCI (naMCI), 29 patients with amnestic MCI (aMCI), and 22 control participants were assessed. Self-report measures assessed patient functional disability, while informants rated the degree of burden they experienced. Difficulties in recognizing anger was evident in the amnestic subtype. Although both the patient groups reported greater social functioning disability, compared with the controls, a relationship between social dysfunction and anger recognition was evident only for patients with naMCI. A significant association was found between burden and anger recognition in patients with aMCI. Impaired emotion recognition abilities impact MCI subtypes differentially. Interventions targeted at patients with MCI, and caregivers are warranted.

Leisure activities, caregiving demands and catecholamine levels in dementia caregivers.

Science.gov (United States)

Chattillion, Elizabeth A; Mausbach, Brent T; Roepke, Susan K; von Känel, Roland; Mills, Paul J; Dimsdale, Joel E; Allison, Matthew; Ziegler, Michael G; Patterson, Thomas L; Ancoli-Israel, Sonia; Grant, Igor

2012-01-01

This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (n = 107; mean age = 73.95 ± 8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = 0.41; p = 0.005) and EPI (β = 0.44; p = 0.003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = -0.08; p = 0.57) or EPI (β = 0.23; p = 0.12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers.

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

OpenAIRE

Paulson, Daniel; Lichtenberg, Peter A.

2011-01-01

The present research investigates differences between primary informal caregivers who were in the care recipient’s immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were ...

The Baby Boomers' Intergenerational Relationships

Science.gov (United States)

Fingerman, Karen L.; Pillemer, Karl A.; Silverstein, Merril; Suitor, J. Jill

2012-01-01

Purpose: As Baby Boomers enter late life, relationships with family members gain importance. This review article highlights two aspects of their intergenerational relationships: (a) caregiving for aging parents and (b) interactions with adult children in the context of changing marital dynamics. Design and Methods: The researchers describe three…

Correlates of caregiver burden among family caregivers of older Korean Americans.

Science.gov (United States)

Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Transactional processes in the development of adult personality disorder symptoms.

Science.gov (United States)

Carlson, Elizabeth A; Ruiz, Sarah K

2016-08-01

The development of adult personality disorder symptoms, including transactional processes of relationship representational and behavioral experience from infancy to early adolescence, was examined using longitudinal data from a risk sample (N = 162). Significant preliminary correlations were found between early caregiving experience and adult personality disorder symptoms and between representational and behavioral indices across time and adult symptomatology. Significant correlations were also found among diverse representational assessments (e.g., interview, drawing, and projective narrative) and between concurrent representational and observational measures of relationship functioning. Path models were analyzed to investigate the combined relations of caregiving experience in infancy; relationship representation and experience in early childhood, middle childhood, and early adolescence; and personality disorder symptoms in adulthood. The hypothesized model representing interactive contributions of representational and behavioral experience represented the data significantly better than competing models representing noninteractive contributions. Representational and behavioral indicators mediated the link between early caregiving quality and personality disorder symptoms. The findings extend previous studies of normative development and support an organizational developmental view that early relationship experiences contribute to socioemotional maladaptation as well as adaptation through the progressive transaction of mutually informing expectations and experience.

Psychological Trauma and LGBT Caregivers: A Conceptual Framework to Guide Practice.

Science.gov (United States)

Glaesser, Richard S; Patel, Bina R

2016-01-01

LGBT adults face unique risk factors such as social isolation, discrimination, and victimization, and occasionally th ey engage in detrimental behaviors like high alcohol and drug use and risky sexual activity that negatively impacts psychological/physical health. These risks can affect their overall health and stress the relationship with an older caregiver/recipient-partner following exposure to acute medical event. The experience of an acute medical event among a LGBT caregiving partner can result in psychological trauma. In this article the authors present a conceptual framework involving stress process theory, life course theory, and family systems perspective to understand the effect of stressors on LGBT caregiving partners. Implications for social work practice include assessing, coordinating care, counseling and negotiating services at micro level, engaging family-centered approaches to support positive transition to caregiving role at mezzo level, and advocating for policy and cultural shifts to supports and diminish stigma of this group.

An Exploratory Study Examining Risk Communication among Adolescent Children, Their Incarcerated Mothers, and Their Caregivers.

Science.gov (United States)

Robillard, Alyssa G; Holliday, Rhonda C; DeHart, Dana D; Lewis, Kaleea; Rutherford, Yamisha; Amutah, Ndidi N

2016-01-01

Adolescent children of incarcerated mothers (ACIM) are typically left in the care of adults (primary caregivers) who play a crucial role in children's care and guidance, as well as in the facilitation of contact and communication with incarcerated mothers. The purpose of this study was to explore the nature of relationships and communication among adolescent children of incarcerated mothers, primary caregivers, and incarcerated mothers using pilot data. Semi-structured individual interviews were conducted with youth aged 12-17 (n=7) and caregivers (n=6) recruited through a non-profit organization working with incarcerated mothers and their children. Incarcerated mothers and primary caregivers represent an important family unit for ACIMs and may play a role in preventing risk behavior. A conceptual framework is offered for further consideration of mother and caregiver communication with youth and youth risk.

Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships.

Science.gov (United States)

Bastawrous, Marina; Gignac, Monique A; Kapral, Moira K; Cameron, Jill I

2015-06-01

To qualitatively explore daughters' experiences with and response to holding multiple roles while providing post-stroke care to a parent. Qualitative study using a descriptive approach. Semi-structured interviewing was used. Interviews were recorded, transcribed and analyzed to develop themes. General community of a metropolitan city. Twenty-three adult daughters caring for a community-dwelling parent who had suffered a stroke. Not applicable. Not applicable. Role overload is a salient issue for daughter caregivers. This overload is best captured by the analogy of "juggling" multiple role demands and responsibilities. Two key themes suggest that role overload resulting from parent care affects daughters': 1) valued relationships (e.g. challenges develop in their relationship with children and partner); and 2) ability to participate in valued activities (e.g. reduced involvement in leisure activities and restricted employment). Future support efforts should help daughters manage the caregiving role in light of other responsibilities. This can mitigate overload-related strain in valued relationships and decreased participation in valued activities, thereby contributing to better health and well-being for daughter caregivers. © The Author(s) 2014.

Fatigue in family caregivers of adult intensive care unit survivors.

Science.gov (United States)

Choi, JiYeon; Tate, Judith A; Hoffman, Leslie A; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P; Given, Barbara A; Sherwood, Paula R

2014-09-01

Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Live-In Versus Live-Out Home Care in Israel: Satisfaction With Services and Caregivers' Outcomes.

Science.gov (United States)

Ayalon, Liat; Green, Ohad

2015-08-01

The present study provides a preliminary examination of the relationship between the type of home care services (live-in vs. live-out; i.e., round the clock vs. several hours per week), the caregiver's satisfaction with services, and the caregiver's burden, distress, well-being, and subjective health status within the conceptual framework of caregiving outcomes proposed by Yates and colleagues (Yates, M. E., Tennstedt, S., & Chang, B. H. [1999]. Contributors to and mediators of psychological well-being for informal caregivers. Journal of Gerontology: Psychological Sciences, 54, P12 -P22. doi:10.1093/geronb/54B.1.P12). A random stratified sample of family caregivers of older adults more than the age of 70 who receive live-in (442) or live-out (244) home care services through the financial assistance of the National Insurance institute of Israel was selected. A path analysis was conducted. Satisfaction with services was higher among caregivers under the live-in home care arrangement and positively related to well-being. Among caregivers, live-in home care was directly associated with higher levels of subjective health and indirectly associated with better well-being via satisfaction with services. The present study emphasizes the potential benefits of live-in home care services for caregivers of older adults who suffer from high levels of impairment and the importance of assessing satisfaction with services as a predictor of caregivers' outcomes. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness.

Science.gov (United States)

Dionne-Odom, J Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A; Rocque, Gabrielle B; Azuero, Andres; Acemgil, Aras; Martin, Michelle Y; Astin, Meka; Ejem, Deborah; Kvale, Elizabeth; Heaton, Karen; Pisu, Maria; Partridge, Edward E; Bakitas, Marie A

2017-08-01

Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes 1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

The influence of culture on the experiences of Korean, Korean American, and Caucasian-American family caregivers of frail older adults: a literature review.

Science.gov (United States)

Kong, Eun-Hi

2007-03-01

The purpose of this review is to explore cultural influences on the experiences of Korean, Korean American, and Caucasian American family caregivers caring for frail older adults in terms of the selection of a primary caregiver, caregiving motivation, support/help-seeking, and negative emotional responses(depression and burden). Seven electronic databases were searched to retrieve studies from 1966 to 2005. Thirty-two studies were identified. This review supported cultural influences on the selection of primary caregiver, caregiving motivation, and support/help-seeking among the three caregiver groups. In Korean caregivers, the major primary caregivers were daughters-in-law while among Korean American and Caucasian American caregivers, the major primary caregivers were daughters or spouses. As a major caregiving motivation, Caucasian American caregivers reported filial affection while Korean caregivers and Korean American caregivers reported filial obligation. Korean caregivers reported higher extended family support, while Caucasian American caregivers reported higher utilization of formal support. Korean caregivers showed the highest levels of depression followed by Korean American caregivers and Caucasian American caregivers. In order to develop culturally appropriate interventions and policies, more research is needed to further explain these differences among the three groups, especially regarding support/help-seeking and negative emotional responses.

A Review of Ethnicity, Culture, and Acculturation Among Asian Caregivers of Older Adults (2000-2012

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Christina E. Miyawaki

2015-02-01

Full Text Available This review identified domains of care experiences among studies of Chinese, Filipino, Japanese, Korean, and Vietnamese caregivers in the United States and Canada between 2000 and 2012. Using a narrative approach, 46 peer-reviewed journal articles were found through electronic databases and references. Considering caregivers’ assimilation to host countries, attention was given to their culture, socioeconomic resources, immigrant status, filial responsibility, generation, and acculturation. Three primary domains were identified across subgroups. The caregivers’ experiences domain was a strong sense of filial responsibility and its varied effects on caregiving experience; in the cultural values domain, reciprocity, and familism. In the acculturation domain, caregivers’ generations influenced their experiences. Because our society is rapidly changing demographically and culturally, studies of older adults and their caregivers that are not only inclusive of all racial/ethnic groups but also sensitive to specific racial/ethnic and cultural subgroup differences are necessary to inform policy and practice.

Adult informal caregivers reporting financial burden in Hawaii, Kansas, and Washington: Results from the 2007 Behavioral Risk Factor Surveillance System.

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Kusano, Claudia T; Bouldin, Erin D; Anderson, Lynda A; McGuire, Lisa C; Salvail, Florentina R; Simmons, Katrina Wynkoop; Andresen, Elena M

2011-10-01

Given the unpaid nature of the work, informal caregiving can create a financial burden for caregivers. Little has been done to identify specific predictors of experiencing financial burden. This study investigated demographic and health factors comparing caregivers who reported having or not having financial burden. Data are derived from adult caregivers (N = 3,317) as part of the 2007 Behavioral Risk Factor Surveillance System in Hawaii, Kansas, and Washington. The adjusted odds ratios for reporting a financial burden were estimated for demographic and other risk factors. Caregivers who reported a financial burden were younger, had lower incomes, were more likely to be current smokers, have had a stroke, and rate their health as fair or poor compared to caregivers who did not report a financial burden. Caregivers who were younger (ages 18-34), resided with care recipients, spent 20-39 hours per week providing care, and reported having a disability were at a statistically significantly higher odds of reporting a financial burden. Given the current economic difficulties faced by many Americans, further insights into the perceived financial burdens experienced by informal caregivers as well as linkages to policy and programs designed to support caregivers are critical for public health professionals to address the expanding needs in states and communities. Published by Elsevier Inc.

Family Conflict as a Mediator of Caregiver Strain

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Scharlach, Andrew; Li, Wei; Dalvi, Tapashi B.

2006-01-01

The present study used structural equation modeling to examine the potential mediating effect of family conflict on caregiver strain in a randomly drawn household sample of 650 adults with primary care responsibility for an adult age 50 or older with a mental disability. Caregiver strain was directly influenced by the conflict, disagreements, and…

Self- Efficacy and Caregiver Strain in Alzheimer\\'s Caregivers

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Farahnaz Mohamadi Shahbalaghi

2006-10-01

Full Text Available This study with a co relational design has conducted to determine relationship between caregiving strain and self-efficacy in family caregiver of patient with Alzheimer. Accessible sample of the study consisted of 81 family caregivers that all of them were member of Iranian Alzheimer Association. Data was gathered by demographic, self-efficacy and care giving strain questioners. Findings showed the most of the subjects were female (%60, spouse of care giving recipient (56%, married (64%, reside in same household (55%, 49% under high school education, 45% of them haven't taken formal courses about the care of the patients, 53% of them were satisfied about providing of care, 36% reported bad health status. The most important caring needs consisted education for better care providing. the Mean of self-efficacy was 66/96 (29-106 and strain 39/43 (17-65. There were not any relations between strain and self-efficacy with demographic variables. There was positive significant Pearson correlation (r=0/539, p=O/ 01 between self-efficacy and strain. Findings indicated that self-efficacy and care giving strain are subjective and individualized concepts. Care giving to elderly patients is a stressful event but moderate co-relationship shows that caregivers apprise the stress of care giving as a constructive and controllable manner.

The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.

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Torabi Chafjiri, Razieh; Navabi, Nasrin; Shamsalinia, Abbas; Ghaffari, Fatemeh

2017-01-01

Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson's correlation coefficient at a significance level of 0.05. The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was relationship was observed in this study between the mean score of spiritual attitude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and emotional dimensions. Providing strategies for improving spirituality, such as teaching spiritual self-care, can improve their burden. Given that such strategies are psychologically approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate

The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia.

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Yoon, Kyung Hee; Moon, Yoo Sun; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil; Lee, Sang Soo; Kim, Do Hoon

2018-01-01

This study explored whether religiosity/spirituality has a protective role against negative caregiving outcomes, in a large multicenter nationwide sample of caregivers of patients with dementia in South Korea. Additionally, this study was the first to examine whether religiosity/spirituality could affect caregiving outcomes according to the various religious affiliations of caregivers. The study was conducted on a sample of 476 caregivers of patients with dementia participated in the Clinical Research Center for Dementia of South Korea (CREDOS). We examined the moderating effect of each of the three dimensions of religiosity/spirituality (organizational religious activity, ORA; non-organizational religious activity, NORA; intrinsic religiosity, IR) on the relationship between activities of daily living (ADL) of patients with dementia and caregiving burden and depressive symptoms of caregivers, using a series of hierarchical regression analyses. In addition, these analyses were conducted according to the religious affiliations of the caregivers. ORA, NORA, and IR of religiosity/spirituality alleviated the effect of ADL of patients on caregiving burden. ORA and IR moderated the relationship between ADL of patients and depressive symptoms of caregivers. These moderating effects of religiosity on caregiving outcomes were different according to various religious groups. We have identified religiosity/spirituality as a protective factor for caregivers of patients with dementia. The sub-dimensions of religiosity as moderators were different by religious affiliations of caregivers. Further studies are needed to investigate the specific religiosity-related factors which could positively impact the mental health of the caregivers of patients with dementia by religions.

Longitudinal Relationship of Low Leisure Satisfaction but not Depressive Symptoms With Systemic Low-Grade Inflammation in Dementia Caregivers

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2014-01-01

Objectives. This study aimed to further elucidate the biobehavioral mechanisms linking dementia caregiving with an increased cardiovascular disease risk. We hypothesized that both elevated depressive symptoms and a behavioral correlate of depression, low leisure satisfaction, are associated with systemic inflammation. Method. We studied 121 elderly Alzheimer’s disease caregivers who underwent 4 annual assessments for depressive symptoms, leisure satisfaction, and circulating levels of inflammatory markers. We used mixed-regression analyses controlling for sociodemographic and health-relevant covariates to examine longitudinal relationships between constructs of interest. Results. There were inverse relationships between total leisure satisfaction and tumor necrosis factor-α (TNF-α; p = .047), interleukin-8 (IL-8; p leisure activities was related to higher levels of TNF-α (p = .045), IL-8 (p leisure activities was related only to higher IL-8 levels (p = .023). Depressive symptoms were not associated with any inflammatory marker (all p values > .17). Depressive symptoms did not mediate the relationship between leisure satisfaction and inflammation. Discussion. Lower satisfaction with leisure activities is related to higher low-grade systemic inflammation. This knowledge may provide a promising way of improving cardiovascular health in dementia caregivers through behavioral activation treatments targeting low leisure satisfaction. PMID:23650246

Children of Incarcerated Mothers and Their Caregivers: Factors Affecting the Quality of Their Relationship

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Mackintosh, Virginia H.; Myers, Barbara J.; Kennon, Suzanne S.

2006-01-01

We examined the quality of the relationship between children of incarcerated mothers and their kinship caregivers, to investigate whether perceived levels of warmth and acceptance were related to assessments of the children's behaviors. The sample consisted of 69 children (6 to 12 years) with currently incarcerated mothers who attended a…

Caregiver reports of patient-initiated violence in psychosis.

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Onwumere, Juliana; Grice, Sarah; Garety, Philippa; Bebbington, Paul; Dunn, Graham; Freeman, Daniel; Fowler, David; Kuipers, Elizabeth

2014-07-01

Aggressive behaviour in psychosis is not uncommon. Community provision for people with psychosis has left informal caregivers to take on a greater role in their care. However, few studies have explored links between patient-initiated violence in mental health caregiving relationships and caregiver functioning. Our study investigated caregiver reports of aggressive acts committed by their relative with psychosis and their links to caregiver appraisals of the caregiving relationship and caregiver outcomes. Caregivers of patients with a recent relapse of psychosis, recruited to a psychological therapy trial, completed the audiotaped Camberwell Family Interview at baseline. This semi-structured interview includes questions on the quality of the relationship between caregiver and patient, and patient history of violence. Seventy-two transcripts of interviews were assessed for reports of patient-initiated violence. One-half of the caregiver sample (52.9%) reported an incident of patient-initiated violence during their interview; 62.2% of these involved violence toward themselves, and 24.3% toward property. Reports of patient violence were associated with caregiver ratings of hostility expressed toward patients, lower self-esteem, and emotion-focused coping. People caring on their own were more likely to report incidents of patient violence. Younger patients, males, and inpatients were more frequently identified as having a history of this kind of violence. Our findings suggested that caregiver reports of patient-initiated violence in psychosis are not uncommon. Mental health staff need to be aware of the risks of such violence for caregivers of people with psychosis, and consider appropriate procedures for minimizing it.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

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LaValley, Susan A; Gage-Bouchard, Elizabeth A

2018-04-01

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

[Gift giving and the ethics of the caregiver].

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Grassin, Marc

2014-12-01

Modern societies establish relationships on a contract basis, but the caregiver relationship invariably involves the notion of a gift. Caring engages the giving / receiving / giving back circle of reciprocity. The caregiving relationship requires a gift ethic which gives meaning to the nurse/patient contract.

Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination

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Wafa eTrad

2015-09-01

Full Text Available IntroductionThis study aimed to assess psychological distress (PD as scored by the Distress Thermometer (DT in adult primary brain tumor (PBT patients and caregivers in a clinic setting, and ascertain if any high risk sub-groups for PD exist. Material and MethodsFrom May 2012 to August 2013, n=96 patients and n=32 caregivers (CG underwent DT screening at diagnosis, and a differing cohort of n=12 patients and n=14 caregivers at first recurrence. Groups were described by diagnosis (high grade, low grade and benign, and English versus non-English speaking. Those with DT score≥4 met caseness criteria for referral to psycho-oncology services. One-way ANOVA tests were conducted to test for between group differences where appropriate.ResultsAt diagnosis and first recurrence, 37.5% and 75.0% (respectively of patients had DT scores above the cut-off for distress. At diagnosis, 78.1% of caregivers met caseness criteria for distress. All caregivers at recurrence met distress criterion. Patients with high grade glioma had significantly higher scores than those with a benign tumor. For patients at diagnosis, non-English speaking participants did not report significantly higher DT scores than English speaking participants.DiscussionPsychological distress is particularly elevated in caregivers, and in patients with high grade glioma at diagnosis. Effective PD screening, triage and referral by skilled care coordinators is vital to enable timely needs assessment, psychological support and effective intervention.

Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers.

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DePasquale, Nicole; Bangerter, Lauren R; Williams, Jessica; Almeida, David M

2016-12-01

This study examines how certified nursing assistants (CNAs) balancing family caregiving roles-child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)-utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The Views of Clients with Mild Intellectual Disabilities regarding Their Working Relationships with Caregivers

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Roeden, John M.; Maaskant, Marian A.; Curfs, Leopold M. G.

2011-01-01

Background: Research studies into the effect of therapies have shown that a good relationship between the client and his caregiver is a key factor in a positive treatment outcome. Methods: The nominal group technique (NGT) has been used in this study to discover what clients with intellectual disabilities feel contributes to a successful working…

Risk factors of dependency of Chilean older adults and consequences on informal caregiving

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María Consuelo CHEIX DIEGUEZ

2015-12-01

Full Text Available  Based on the 2009 National Survey of Elderly Dependency we characterize older people who are dependent in Chile, and we compute multivariate logistic regression models to assess the factors associated with dependency. In addition to age and the presence of diseases, there are other factors that are associated with increased prevalence of dependence, such as educational level, quality of family relationships and conducting activities such as physical exercise and reading. We also characterize and describe the level of well-being of the informal caregivers of the dependent persons. Stress informal caregiver is expressed both by an increase in depressive feelings and overload, as well as by a deterioration of physical health, who also tend to be women, older, low educational levels, intensifying further vulnerability context of this group.

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors.

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Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

2017-01-01

In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.

Validation of a model of family caregiver communication types and related caregiver outcomes.

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Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

Familial and Contextual Influences on Children's Prosocial Behavior: South African Caregivers as Adult Protective Shields in Enhancing Child Mental Health.

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Parchment, Tyrone M; Small, Latoya; Osuji, Hadiza; McKay, Mary; Bhana, Arvin

2016-03-01

The mental health of children is too frequently overlooked in resource scarce low and middle-income countries. South Africa represents one of many country contexts struggling to meet the mental health needs of large numbers of young people. Family caregivers have been identified as potential protective influences on child mental health, even for those children being reared with high exposure to poverty. This paper explores contextual influences on South African caregiver's social-emotional health living in communities impacted by poverty and food insecurity as they attempt to support their children's prosocial skills and behavior. Structural Equation Modeling (SEM) was employed to explore the relationship between neighborhood social cohesion and caregiver report of child's prosocial behavior as mediated by the caregiver's mental health ( n =478). Results indicated that the more caregivers experience their communities as socially cohesive, the better their social-emotional well-being, thus positively related to their reports of children's prosocial behavior. Furthermore, when there is a male head of household, caregivers reported better social-emotional well-being in comparison to female headed of household. The more food secure caregivers also were likely to report better general health. South African community characteristics and caregivers, in particular male caregivers, are integral to child and caregiver mental health. Future research should examine the impact of interventions that mobilize community and caregiver supports for children's prosocial behavior and mental health.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

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Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Developmental and ethnic issues experienced by emerging adult African American women related to developing a mature love relationship.

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Tyson, Sheryl Y

2012-01-01

This qualitative study explored perspectives of emerging adult African American women on the development of mature love relationships. Inductive analysis of focus group interviews, conducted with a purposive sample of 31 African American women, yielded themes related to relationship goals and characteristics, and interpersonal and societal challenges to finding the right partner and developing a mature love relationship. Core categories that emerged from analysis of the discussions were (1) age and relationship goal differences within the emerging adult group, (2) mature love relationship goals and characteristics, (3) interpersonal obstacles to finding the right partner, and (4) societal obstacles to finding the right partner. Two approaches-black womanist/feminist thought (Collins, 2000 ; Walker, 1983 ) and relationship maturity theory (Paul & White, 1990 )-were then combined to explain the influence of historic and contemporary interpersonal and societal factors on developmental and ethnic issues that challenge positive gender identity formation, hasten intimacy maturity, and hinder the development of mature love relationships among emerging adult African American women. For these women, premature responsibility, especially early caregiver burden, was related to the early development of intimacy capacity and the desire for a mature love relationship, to be protected, and to have someone to help carry the load. Interracial dating, negative stereotypic images of African American women, and even positive images of enduring black love relationships posed difficult challenges to positive identity formation and intimacy maturity. A primary challenge was to counteract negative stereotypic images, so that they could develop their own self-identities as women and as relationship partners.

Concerns about aging and caregiving among middle-aged and older lesbian and gay adults.

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Czaja, Sara J; Sabbag, Samir; Lee, Chin Chin; Schulz, Richard; Lang, Samantha; Vlahovic, Tatiana; Jaret, Adrienne; Thurston, Catherine

2016-11-01

Despite the increasing number of lesbian and gay older adults, research geared towards health and well-being of this population is limited. Many lesbian and gay seniors experience health disparities and are at risk for poor health outcomes. The aims of this study were to gather in-depth information on the concerns of lesbian and gay elders with respect to aging and care needs. The sample included 124 gay men and lesbian women aged 50+ years. Data were gathered via focus groups and questionnaires. The focus groups addressed: (1) concerns about aging in the LGBT community, (2) barriers to needed support and services, (3) concerns about caregiving and (4) needed programs for lesbian and gay seniors. Concerns expressed about aging included: lack of financial security, lack of family or social support, fears about the lack of someone to provide needed care, and discrimination in healthcare or service communities. Participants also indicated concerns about being alone and vulnerable and a need for resources and support programs, specifically for lesbian and gay older adults and for lesbian and gay caregivers. These findings suggest needed areas of support and programs for older gay men and lesbian women. They also suggest that healthcare professionals might need more training regarding the particular needs and concerns of this community.

Exploring the relationship between physical health, depressive symptoms, and depression diagnoses in Hispanic dementia caregivers.

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Cucciare, Michael A; Gray, Heather; Azar, Armin; Jimenez, Daniel; Gallagher-Thompson, Dolores

2010-04-01

The present study examined the relationship between self-reported physical health, depressive symptoms, and the occurrence of depression diagnosis in Hispanic female dementia caregivers. Participants were 89 Hispanic female dementia caregivers. This study used a cross-sectional design. Baseline depression and physical health data were collected from participants enrolled in the 'Reducing Stress in Hispanic Anglo Dementia Caregivers' study sponsored by the National Institute on Aging. Physical health was assessed using the Medical Outcome Study Short Form-36 (SF-36), a one-item self-report health rating, body mass index, and the presence or history of self-reported physical illness. Depressive symptoms were assessed using the Center for Epidemiologic Studies-Depression Scale (CES-D). The occurrence of depression diagnosis was assessed using the Clinical Interview for DSM-IV Axis I Disorders (SCID). Multiple linear and logistic regression analysis was used to examine the extent to which indices of physical health and depressive symptoms accounted for variance in participants' depressive symptoms and depressive diagnoses. Self-reported indices of health (e.g., SF-36) accounted for a significant portion of variance in both CES-D scores and SCID diagnoses. Caregivers who reported worsened health tended to report increased symptoms of depression on the CES-D and increased likelihood of an SCID diagnosis of a depressive disorder. Self-reported health indices are helpful in identifying Hispanic dementia caregivers at risk for clinical levels of depression.

Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

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Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

2015-08-01

Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia. © The Author(s) 2015.

Characteristics of Elderly and Other Vulnerable Adult Victims of Homicide by a Caregiver: National Violent Death Reporting System--17 U.S. States, 2003-2007

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Karch, Debra; Nunn, Kelly Cole

2011-01-01

Homicides of dependent elderly and nonelderly adults by their caregivers violate trust and have long-term consequences for families. A better understanding of the characteristics of homicide by caregivers may provide insights that can inform prevention efforts. Data collected in the National Violent Death Reporting System (NVDRS) between 2003 and…

Religious Involvement and Adaptation in Female Family Caregivers.

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Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay

2016-03-01

To examine the relationship between religious involvement (RI) and adaptation of women caring for family members with severe physical or neurological disability. Two-site cross-sectional study. Community. A convenience sample of 251 caregivers was recruited. RI and caregiver adaptation (assessed by perceived stress, caregiver burden, and depressive symptoms) were measured using standard scales, along with caregiver characteristics, social support, and health behaviors. Bivariate and multivariate analyses were conducted to identify relationships and mediating and moderating factors. Religious involvement (RI) was associated with better caregiver adaptation independent of age, race, education, caregiver health, care recipient's health, social support, and health behaviors (B = -0.09, standard error = 0.04, t = -2.08, P = .04). This association was strongest in caregivers aged 58-75 and spouses and for perceived stress in blacks. Religious involvement (RI) in female caregivers is associated with better caregiver adaptation, especially for those who are older, spouses of the care recipients, and blacks. These results are relevant to the development of future interventions that provide support to family caregivers. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective.

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Williams, Allison; Sethi, Bharati; Duggleby, Wendy; Ploeg, Jenny; Markle-Reid, Maureen; Peacock, Shelley; Ghosh, Sunita

2016-03-02

A little-studied issue in the provision of care at home by informal caregivers is the increase in older adult patients with chronic illness, and more specifically, multiple chronic conditions (MCC). We know little about the caregiving experience for this population, particularly as it is affected by social location, which refers to either a group's or individual's place/location in society at a given time, based on their intersecting demographics (age, gender, education, race, immigration status, geography, etc.). We have yet to fully comprehend the combined influence of these intersecting axes on caregivers' health and wellbeing, and attempt to do this by using an intersectionality approach in answering the following research question: How does social location influence the experience of family caregivers of older adults with MCC? The data presented herein is a thematic analysis of a qualitative sub-set of a large two-province study conducted using a repeated-measures embedded mixed method design. A survey sub-set of 20 survey participants per province (n = 40 total) were invited to participate in a semi-structured interview. In the first stage of data analysis, Charmaz's (2006) Constructivist Grounded Theory Method (CGTM) was used to develop initial codes, focused codes, categories and descriptive themes. In the second and the third stages of analysis, intersectionality was used to develop final analytical themes. The following four themes describe the overall study findings: (1) Caregiving Trajectory, where three caregiving phases were identified; (2) Work, Family, and Caregiving, where the impact of caregiving was discussed on other areas of caregivers' lives; (3) Personal and Structural Determinants of Caregiving, where caregiving sustainability and coping were deliberated, and; (4) Finding Meaning/Self in Caregiving, where meaning-making was highlighted. The intersectionality approach presented a number of axes of diversity as comparatively more important

A Bright Side to the Work-Family Interface: Husbands' Support as a Resource in Double-and-Triple-Duty Caregiving Wives' Work Lives.

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DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Berkman, Lisa F; Cabot, Thomas D

2017-06-16

This study examined how women who combine long-term care employment with unpaid, informal caregiving roles for children (double-duty-child caregivers), older adults (double-duty-elder caregivers), and both children and older adults (triple-duty caregivers) differed from their workplace-only caregiving counterparts on workplace factors related to job retention (i.e., job satisfaction and turnover intentions) and performance (i.e., perceived obligation to work while sick and emotional exhaustion). The moderating effects of perceived spouse support were also examined. Regression analyses were conducted on survey data from 546 married, heterosexual women employed in U.S.-based nursing homes. Compared to workplace-only caregivers, double-duty-elder and triple-duty caregivers reported more emotional exhaustion. Double-duty-child caregivers reported lower turnover intentions and both double-and-triple-duty caregivers felt less obligated to work while sick when perceiving greater support from husbands. Results indicate that double-and-triple-duty caregiving women's job retention and obligation to work while sick may depend on perceived spouse support, highlighting the important role husbands play in their wives' professional lives. Findings also lend support to the emerging literature on marriage-to-work positive spillover, and suggest that long-term care organizations should target marital relationships in family-friendly initiatives to retain and engage double-and-triple-duty caregiving employees. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Imagining the Future: Perspectives Among Youth and Caregivers in the Trans Youth Family Study

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Katz-Wise, Sabra L.; Budge, Stephanie L.; Orovecz, Joe J.; Nguyen, Bradford; Nava-Coulter, Brett; Thomson, Katharine

2016-01-01

Future perspectives of transgender youth and their caregivers may be shaped by knowledge of discrimination and adverse mental health among transgender adults. Qualitative data from the Trans Youth Family Study were used to examine how transgender and gender nonconforming (TGN) youth and their caregivers imagine the youth's future. A community-based sample of 16 families (16 TGN youth, ages 7-18 years, and 29 caregivers) was recruited from two regions in the United States. Participants completed in-person qualitative interviews and surveys. Interview transcripts were analyzed using grounded theory methodology for coding procedures. Analyses yielded 104 higher order themes across 45 interviews, with eight prominent themes: comparing experiences with others, gender affirming hormones, gender affirming surgery, gender norms, questioning whether the youth is really transgender, expectations for romantic relationships, uncertainty about the future, and worries about physical and emotional safety. A conceptual model of future perspectives in TGN youth and caregivers is presented and clinical implications are discussed. PMID:28068129

The Anxiety Level of Caregivers of Neurological Patients with Dysphagia.

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Serel Arslan, Selen; Demir, Numan; Karaduman, A Ayşe

2017-08-01

We aimed to investigate anxiety level of caregivers of neurological patients with dysphagia, and the relationship of patient-related factors to anxiety level of dysphagia caregivers. A total of 103 adult neurological patients with dysphagia (study group), 30 without dysphagia (control group), and their primary caregivers were included. Types of feeding, condition of dependency in eating and drinking, dysphagia duration, and history of previous dysphagia treatment were recorded for study group. In study group, the Turkish version of the Eating Assessment Tool-10 (T-EAT-10) was used to determine dysphagia symptom severity. Penetration and aspiration severity was determined with the penetration-aspiration scale (PAS). The Spielberger State-Trait Anxiety Inventory (STAI) that has two subscales including state anxiety (S-STAI) and trait anxiety (T-STAI) was used to determine anxiety level of caregivers. There was no difference between groups in terms of age, gender, weight, and height. The mean S-STAI was 42.56 ± 10.10 for the study group and 29.20 ± 6.64 for the control group (p dysphagia treatment (p = 0.01, r = 0.25). No correlation was found between STAI (in terms of both S-STAI and T-STAI) and T-EAT-10, PAS, types of feeding, condition of dependency in eating and drinking, dysphagia duration (p > 0.05). Caregivers of neurological patients with dysphagia have greater anxiety level than caregivers of neurological patients without dysphagia.

The role of attitudes and culture in family caregiving for older adults.

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Anngela-Cole, Linda; Hilton, Jeanne M

2009-01-01

This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.

Factors associated with family caregiver dissatisfaction with acute hospital care of older cognitively impaired relatives.

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Whittamore, Kathy H; Goldberg, Sarah E; Bradshaw, Lucy E; Harwood, Rowan H

2014-12-01

To identify patient and caregiver characteristics associated with caregiver dissatisfaction with hospital care of cognitively impaired elderly adults. Secondary analysis of data from a randomized controlled trial. An 1,800-bed general hospital in England providing the only emergency medical services in its area. Cognitively impaired individuals aged 65 and older randomly assigned to a specialist unit or standard geriatric or internal medical wards (N = 600) and related caregivers (N = 488). Patient and caregiver health status was measured at baseline, including delirium, cognitive impairment, behavioral and psychological symptoms, activities of daily living, and caregiver strain. Caregiver satisfaction with quality of care was ascertained after hospital discharge or death. Four hundred sixty-two caregivers completed satisfaction questionnaires. Regardless of assignment, 54% of caregivers were dissatisfied with some aspects of care, but overall 87% were satisfied with care. The main areas of dissatisfaction were communication, discharge planning, and medical management. Dissatisfaction was associated with high levels of patient behavioral and psychological symptoms on admission, caregiver strain and poor psychological well-being at admission, a diagnosis of delirium, and the relationship between the caregiver and the patient. There was less dissatisfaction from caregivers of patients managed on the specialist Medical and Mental Health Unit than those on standard wards, after controlling for multiple factors. Dissatisfaction was associated with patient behavioral and psychological symptoms and caregiver strain but was not immutable to efforts to improve care. © 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.

Sleep Duration and the Cortisol Awakening Response in Dementia Caregivers Utilizing Adult Day Services

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Leggett, Amanda N.; Liu, Yin; Klein, Laura Cousino; Zarit, Steven H.

2015-01-01

Objective Sleep complaints are common among caregivers and are associated with detriments in mental and physical health. Cortisol, a biomarker of the stress process, may link sleep with subsequent health changes in caregivers. The current study examines whether sleep duration is directly associated with the cortisol awakening response (CAR), or if it is moderated by Adult Day Services (ADS) use, an intervention found previously to influence daily CAR by reducing stressor exposure. Methods Associations were examined in caregivers (N=158) of individuals with dementia (IWD) on days when IWDs attended ADS and days when IWDs did not attend ADS. Data were gathered over 8 consecutive days. Caregivers were primarily female (87.3%) with a mean age of 61.59. A multi-level growth curve model tested the association of an interaction of today's ADS use and last night's sleep duration with today's CAR as the outcome. Results The interaction between ADS use and within-person sleep duration was significant such that when an individual sleeps longer than their average but does not use ADS, they have a smaller or blunted CAR. On the other hand when an individual sleeps longer than their average and uses ADS, they have a higher but nonsignificant CAR. Sleeping shorter than usual was associated with a dynamic rise regardless of ADS use. Conclusions Findings indicate that ADS use moderates the association between sleep duration and CAR such that longer than average sleep is associated with blunted, dysregulated cortisol patterns only on non-ADS days. PMID:26348500

Effects of Adult Day Care on Daily Stress of Caregivers: A Within-Person Approach

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Kim, Kyungmin; Femia, Elia E.; Almeida, David M.; Savla, Jyoti; Molenaar, Peter C. M.

2011-01-01

Objectives. This article examined exposure to and appraisal of care-related stressors associated with use of adult day services (ADS) by family caregivers of individuals with dementia. Methods. Using a within-person withdrawal design (A-B-A-B), we compared caregivers’ exposure to and appraisal of behavior problems on days their relative attended and did not attend ADS. Participants were 121 family caregivers enrolling a relative with dementia in an ADS program. Daily assessments were obtained prior to the person's attending ADS for the first time and after 1 and 2 months of attendance on days the person attended and did not attend ADS. Results. Total exposure to stressors and stress appraisals decreased significantly over time on ADS days compared with non-ADS days. Most of this difference was accounted by the time the person with dementia was away from the caregiver, but there were also significant reductions in behavioral problems during the evening and improved sleep immediately following ADS use. Discussion. ADS use lowered caregivers’ exposure to stressors and may improve behavior and sleep for people with dementia on days they have ADS. The study highlights how a within-person design can identify the effects of an intermittent intervention, such as ADS. PMID:21642593

A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial.

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Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent

2013-12-01

The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.

Acceptance of Smartphone in Enhancing Patient-Caregivers Relationship

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Wan Khairuzzaman Wan Ismail

2012-09-01

Full Text Available Patients may take more initiative to give more attention to their health as well as foster closer relationship with the caregivers and this has been made possible through smartphone. This paper investigates the perceived usefulness of smartphone among healthcare personnel in a private hospital setting. The study has identified elements which have had impact on individual decision to use smartphones using Technology Acceptance Model (TAM. Questionnaires were distributed to 57 respondents including medical doctors, nurses and head of department of a hospital. The analysis shows that the younger generations were more ‘trendy’ in owning a Smartphone. The study indicates that females reported better acceptance of smartphone use in their works. Healthcare industry will be more patient-centric instead of doctor-centric, hence, it is important for healthcare providers to provide services in line with the customers’ requirement without jeopardizing patient safety and lives.

Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review.

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Guay, Cassioppée; Auger, Claudine; Demers, Louise; Mortenson, W Ben; Miller, William C; Gélinas-Bronsard, Dominique; Ahmed, Sara

2017-09-19

When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions. This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought. A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed. A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and

Informal caregiving and intimate relationships: the experiences of spouses of UK military personnel.

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Thandi, Gursimran; Oram, S; Verey, A; Greenberg, N; Fear, N T

2017-08-01

Currently, there is no research available on the experiences of spouses providing informal care to wounded, injured or sick (WIS) UK military personnel. The aim of this study was to fill this gap by investigating the relationship experiences of non-military partners caring for WIS UK military personnel. Spouses of WIS military personnel (n=25) completed telephone interviews with the research team. The data were transcribed and analysed using thematic analysis. The transcripts were cross-coded and checked for inter-rater reliability. Six major themes were identified: (1) communication between couples, (2) adverse family environment, (3) reintegration, (4) intimacy, (5) financial uncertainty and (6) transition from partner to caregiver. Partners caring for injured/ill military personnel appear to be at risk of experiencing personal distress caused by impaired relationship functioning, which may lead to diminished physical and mental well-being. Partners of WIS military personnel experience significant levels of distress and burden associated with caregiving in the form of arguments with the military partner, problems in reintegration and a lack of physical and emotional intimacy. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Attachment and caregiving relationships in families affected by parental incarceration

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Shlafer, Rebecca J.; Poehlmann, Julie

2011-01-01

This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver–child and incarcerated parent–child relationships, contact with incarcerated parents, and children’s behavior problems. Although some children viewed their incarcerated parents as positive attachment figures, other children reported negative feelings toward or no relationship with incarcerated parents. In addition, our assessments of children nine years old and older revealed that having no contact with the incarcerated parent was associated with children reporting more feelings of alienation toward that parent compared to children who had contact. Children’s behavior problems were a primary concern, often occurring in a relational context or in reaction to social stigma associated with parental imprisonment. PMID:20582847

Barriers to nutrition education for older adults, and nutrition and aging training opportunities for educators, healthcare providers,volunteers and caregivers.

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Meck Higgins, Mary; Barkley, Mary Clarke

2004-01-01

Literature citations of barriers to nutrition education found in those who teach and care for older adults, as well as within older adults themselves, are discussed. No attempt was made to compare educational barriers for learners of varying ages. These obstacles need to be addressed in order for nutrition to be taught or learned effectively so that nutrition practices and health improve. Barriers for healthcare professionals to providing nutrition education include misconceptions and stereotypes about older adults and about their nutritional concerns; lack of attention to and lack of funding for older adult educational programs; and difficulties recruiting older learners. Hindrances for older adults in responding to nutrition education can be categorized as attitudinal, motivational, environmental, and related to low literacy and poverty. Published examples of opportunities for education and training about nutrition and aging that are in place for health educators, healthcare providers, volunteers and caregivers regarding nutrition and aging are discussed. Suggestions are presented regarding future efforts to minimize educational barriers and to provide training for healthcare professionals, volunteers and caregivers. New research is needed in this field of study in order to realize the potential quality of life benefits and reduced healthcare costs associated with providing effective nutrition education to older adults. This is one of a series of reviews of recent literature on nutrition education for older adults.

The impact of individual Cognitive Stimulation Therapy (iCST on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial.

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Martin Orrell

2017-03-01

Full Text Available Cognitive stimulation therapy (CST is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST program in (i improving cognition and quality of life (QoL for the person with dementia and (ii mental and physical health (well-being for the caregiver.A single-blind, pragmatic randomised controlled trial (RCT was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs. Participants were randomly assigned to iCST (75, 30-min sessions or treatment as usual (TAU control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog] and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD] for the person with dementia and general health status (Short Form-12 health survey [SF-12] for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D] for the caregiver. Intention to treat (ITT analyses were conducted. At the post-test (26 wk, there were no differences between the iCST and TAU groups in the outcomes of cognition (mean

Kinship Ties: Attachment Relationships that Promote Resilience in African American Adult Children of Alcoholics

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J. Camille Hall

2007-05-01

Full Text Available For many African Americans, the extended family has been the source of strength, resilience, and survival. Although changes in African American families, like changes in all families in the United States that have diluted the importance of kinship ties, many African Americans continue to place a high value on extended family members. Children of Africans and communities of African descent traditionally interact with multiple caregivers, consisting of kin, and fictive kin.Utilizing both attachment theory and risk and resilience literature, this paper discusses ways to better understand the resilient nature of African American families and how multiple attachment relationships assist at-risk African American children, specifically adult children of alcoholics (ACOAs.

Concept Analysis: Alzheimer's Caregiver Stress.

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Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Caserta, Michael

2016-01-01

The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer's disease and related dementias. Currently, there are more than 15 million unpaid caregivers for persons suffering from Alzheimer's disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. The paper incorporates the modified method of Wilson's concept analysis procedure to analyze the concept of caregiver stress. A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. © 2014 Wiley Periodicals, Inc.

The balance of give and take in caregiver-partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

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McPherson, Christine J; Wilson, Keith G; Chyurlia, Livia; Leclerc, Charles

2010-05-01

We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.

Beyond Strain: Personal Strengths and Mental Health of Mexican and Argentinean Dementia Caregivers.

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Sutter, Megan; Perrin, Paul B; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

2016-07-01

Life expectancy is increasing in Latin America resulting in the need for more family caregivers for older adults with dementia. The purpose of the current study was to examine the relationships between personal strengths (optimism, sense of coherence [SOC], and resilience) and the mental health of dementia caregivers from Latin America. Primary family dementia caregivers (n = 127) were identified via convenience sampling at the Instituto de Neurociencias de San Lucas, Argentina, and CETYS University, in Baja California, Mexico and completed measures of these constructs. Personal strengths explained between 32% and 50% of the variance in caregiver mental health. In a series of hierarchical multiple regressions, more manageability (β = -.38, p = .001), general resilience (β = -.24, p = .012), and social competence (β = -.21, p = .034) were uniquely associated with lower depression. Greater comprehensibility (β = -.28, p = .008) was uniquely associated with decreased burden, and manageability was marginally related (β = -.21, p< .10). Greater optimism (β = .37, p< .001) and manageability (β = .27, p = .004) were uniquely associated with increased life satisfaction. The personal strengths of caregivers in Latin America may be particularly important for their mental health because of the culturally imbedded sense of duty toward older family members. Incorporating strengths-based approaches into research on caregiver interventions in regions where caregiving is a highly culturally valued role such as Latin America may have the potential to improve the mental health of dementia caregivers. © The Author(s) 2015.

Unattractive infant faces elicit negative affect from adults.

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Schein, Stevie S; Langlois, Judith H

2015-02-01

We examined the relationship between infant attractiveness and adult affect by investigating whether differing levels of infant facial attractiveness elicit facial muscle movement correlated with positive and negative affect from adults (N=87) using electromyography. Unattractive infant faces evoked significantly more corrugator supercilii and levator labii superioris movement (physiological correlates of negative affect) than attractive infant faces. These results suggest that unattractive infants may be at risk for negative affective responses from adults, though the relationship between those responses and caregiving behavior remains elusive. Copyright © 2015 Elsevier Inc. All rights reserved.

Projecting social support needs of informal caregivers in Malaysia.

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Abu Bakar, Siti Hajar; Weatherley, Richard; Omar, Noralina; Abdullah, Fatimah; Mohamad Aun, Nur Saadah

2014-03-01

This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers. © 2013 John Wiley & Sons Ltd.

Reciprocity, Elder Satisfaction, and Caregiver Stress and Burden: The Exchange of Aid in the Family Caregiving Relationship.

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Dwyer, Jeffrey W.; And Others

1994-01-01

Examined how older mother's reciprocation of assistance provided by caregiving daughter simultaneously influences satisfaction of mother and stress/burden of caregiver in 135 mother-daughter dyads. Results indicated that reciprocity did not directly or indirectly affect mother's satisfaction but did significantly reduce stress/burden of daughters.…

Stressors and life goals of caregivers of individuals with disabilities.

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Raver, Sharon A; Michalek, Anne P M; Gillespie, Amy M

2011-01-01

Caregivers of individuals with disabilities can experience stress as they manage caregiving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed.

The Impact of Family Functioning on Caregiver Burden among Caregivers of Veterans with Congestive Heart Failure

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Moore, Crystal Dea

2010-01-01

A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…

Social support as a mediator variable of the relationship between depression and life satisfaction in a sample of Saudi caregivers of patients with Alzheimer's disease.

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Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed

2017-02-01

Caring for someone with Alzheimer's disease (AD) is very challenging. Social support may play a crucial role in helping caregivers to adapt better to their caregiving role. The aim of this study is to explore the role of social support as a moderator variable of the relationship between depression and life satisfaction in caregivers for patients with AD in Saudi Arabia. In this cross-sectional study, 122 caregivers for patients with AD completed questionnaires assessing informal social support, depressive symptoms, and general life satisfaction. The demographic characteristics showed that 79% (n = 96) of caregivers were females and between the ages of 20 and 50. Higher levels of social support positively correlated with reported higher levels of life satisfaction (r = 0.483, p Depression was negatively correlated with social support (r = -0.418, p Social support was found to be a partial mediator variable, mediating approximately 23.05% of the total effect of depression on life satisfaction (Sobel = -3.065, p = 0.002). Informal social support can act as a mediator variable in the relationship of depression and life satisfaction in caregivers of AD patients. Improving the informal social support networks may help in coping with caregiving burden and better quality of life.

Relationship between wellness and sociodemographic characteristics of caregivers of people with cancer

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William Tiago de Oliveira

Full Text Available Objective.To investigate the association between wellness and sociodemographic characteristics of caregivers of people with cancer. Methods. This was a cross-sectional study conducted in Maringá, Paraná, Brazil, with 96 caregivers. Data were collected between July 2011 and February 2012. A global wellness assessment scale was used to measure wellness and data on sociodemographic characteristics were gathered using a complementary form. Results. The characteristics associated with reduced wellness among caregivers of people with cancer were: being separated, being a mother, having a higher education degree, being employed, being the sole caregiver, having a family income of up to one minimum wage and presenting health problems. Conclusion. Some demographic characteristics are associated with loss of wellness among these caregivers. Nurses must take this information into account when formulating strategies to improve the wellness of caregivers, considering their context.

Motor performance in Prader-Willi syndrome patients and its potential influence on caregiver's quality of life.

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Chiu, Valeria Jia-Yi; Tsai, Li-Ping; Wei, Jang-Ting; Tzeng, I-Shiang; Wu, Hsin-Chi

2017-01-01

�= 0.031), as assessed using the SF-36 questionnaire. The timed up-and-go test was positively correlated with the social relationship domain ( r s 0.831, P  = 0.021), as assessed using the WHOQOL-BREF questionnaire. The parenting stress index showed no association with the PWS patient's physical activities. All adults with PWS showed decreased upper and lower limb strength and functional mobility when compared to healthy adults. Some of their motor performance might have negative effects on their primary family members in terms of social participation and physical and emotional role limitations. Future research should explore the relationship between physical performances, psychological difficulties of PWS and caregiver's QOL.

Patterns and predictors of patient and caregiver engagement in heart failure care: a multi-level dyadic study.

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Lee, Christopher S; Vellone, Ercole; Lyons, Karen S; Cocchieri, Antonello; Bidwell, Julie T; D'Agostino, Fabio; Hiatt, Shirin O; Alvaro, Rosaria; Buck, Harleah G; Riegel, Barbara

2015-02-01

Heart failure is a burdensome clinical syndrome, and patients and their caregivers are responsible for the vast majority of heart failure care. This study aimed to characterize naturally occurring archetypes of patient-caregiver dyads with respect to patient and caregiver contributions to heart failure self-care, and to identify patient-, caregiver- and dyadic-level determinants thereof. Dyadic analysis of cross-sectional data on patients and their caregivers. Outpatient heart failure clinics in 28 Italian provinces. 509 Italian heart failure patients and their primary caregivers. Multilevel and mixture modeling were used to generate dyadic averages and incongruence in patient and caregiver contributions to heart failure self-care and identify common dyadic archetypes, respectively. Three distinct archetypes were observed. 22.4% of dyads were labeled as novice and complementary because patients and caregivers contributed to different aspects of heart failure self-care that was generally poor; these dyads were predominantly older adults with less severe heart failure and their adult child caregivers. 56.4% of dyads were labeled as inconsistent and compensatory because caregivers reported greater contributions to the areas of self-care most insufficient on the part of the patients; patients in these dyads had the highest prevalence of hospitalizations for heart failure in the past year and the fewest limitations to performing activities of daily living independently. Finally, 21.2% of dyads were labeled as expert and collaborative because of high contributions to all aspects of heart failure self-care, the best relationship quality and lowest caregiver strain compared with the other archetypes; patients in this archetype were likely the sickest because they also had the worst heart failure-related quality of life. Three distinct archetypes of dyadic contributions to heart failure care were observed that represent a gradient in the level of contributions to self

Sleep in caregivers: what we know and what we need to learn.

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McCurry, Susan M; Song, Yeonsu; Martin, Jennifer L

2015-11-01

The number of informal caregivers providing assistance to adults is increasing commensurate with our aging society. Sleep disturbances are prevalent in caregivers and associated with negative physical, medical, and functional outcomes. Here, we describe the predisposing, precipitating, and perpetuating factors contributing to the development of sleep problems in caregivers, and discuss three understudied caregiving populations that have clinical importance and unique circumstances influencing sleep quality and health. There is clear evidence supporting the interaction between sleep loss, caregiving stress, and vulnerability to chronic disease. Telehealth and telemedicine sleep interventions for caregivers combined with assistive technologies targeting care-receivers have potential to be more individualized, affordable, and widely accessible than traditional in-person insomnia treatment approaches. Limited data exist describing the etiology and treatment of sleep problems in caregivers of veterans, medical patients newly discharged from the hospital, and developmentally disabled adults. There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

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Henriksson, Anette; Årestedt, Kristofer

2013-07-01

Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

The mediating effects of coping strategies on the relationship between secondary traumatic stress and burnout in professional caregivers in the UAE.

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Hamid, Abdalla A R M; Musa, Saif A

2017-02-01

Professional caregivers dealing with traumatized victims or mental health clients are at increased risk for developing the same symptoms as persons who are exposed directly to the trauma. This research was aimed at examining the relationship between secondary traumatic stress, burnout and coping strategies in 502 professional caregivers who work in schools, hospitals, charity institutes and welfare centers in the United Arab Emirates (UAE). A further aim was to test the mediating effect of coping on the relationship between burnout and secondary traumatic stress. Measures used in this study were the Professional Quality of Life Questionnaire (ProQOL), The General Health Questionnaire (GHQ-28), The Maslach Burnout Inventory: Human Services Survey (MBI-HSS) and Endler and Parker's Coping Inventory. Task-focused coping, personal accomplishment and compassion satisfaction were negatively associated with secondary traumatic stress. Burnout, emotion-focused and distraction coping were positively related to secondary traumatic stress. Coping partially mediated the relationship between burnout and secondary traumatic stress. There were also significant gender differences in depersonalization and distraction coping. Efforts need to focus on improvement of caregivers' work environments, enhancing their coping skills and professional development.

Relationship between Humor and Subjective Well-Being with regard to Mediating Role of Resilience in Caregivers of Patients with Spinal Injury

Directory of Open Access Journals (Sweden)

M. Abbasi

2017-04-01

Full Text Available Aims: Family members are the main components of the care system for injured spinal cord patients. Taking care of such patients is a tense responsibility. The purpose of this study was to investigate the relationship between humor and subjective well-being with regard to the mediating role of resilience in caregivers of patients with spinal cord injury. Instruments & Methods: In this descriptive-correlational study, 219 caregivers of spinal cord injured patients referred to Borna Scientific-Sport Institute in Isfahan in 2016 were selected using available sampling. Data were collected using Subjective Well-Being Scale (SWBS, Resilience Scale and Sense of Humor Questionnaire (SHQ. Data analysis was performed by Amos 18 software, using Structural Equation Modeling (SEM and Bootstrap test. Finding: Correlation between humor and resilience with subjective well-being was significant (p<0.001. The proposed model was good-fitting model (p<0.05. There was also a significant indirect relationship between humor and subjective well-being through resilience (β=0.22; p<0.006. Conclusion: Psychological resilience in relationship between humor and subjective well-being as mediator plays an important role in improving the psychological state of caregivers of patients with spinal cord injury.

Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

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Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

2016-03-01

We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

The need to know caregiver perspectives toward using smart home technology.

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Giger, Jarod T; Markward, Martha

2011-01-01

This article reviews the literature on adults with serious mental illness, their caregivers, and smart home technology. The article provides compelling evidence for social workers to undertake research aimed at investigating caregivers' perceptions toward using smart home technology for care of adult family members or friends with a serious mental illness. Empirical support for using smart home technologies with adults with serious mental illness is provided, and recommendations for future social work research are offered.

Caregiver Life Satisfaction: Relationship to Youth Symptom Severity through Treatment

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Athay, M. Michele

2012-01-01

This study utilized the Satisfaction with Life Scale to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383). Specifically, this study assessed how caregiver life satisfaction relates to youth symptom severity throughout treatment. Hierarchical linear modeling with a time-varying covariate was used…

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

Science.gov (United States)

Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

2018-03-01

Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

Family caregivers' health in connection with providing care.

Science.gov (United States)

Erlingsson, Christen L; Magnusson, Lennart; Hanson, Elizabeth

2012-05-01

Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration-and a main interpretation and conceptual model of Swedish family caregivers' health-caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers' beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers' beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers' health.

Caregiver Coaching Strategies for Early Intervention Providers: Moving toward Operational Definitions

Science.gov (United States)

Friedman, Mollie; Woods, Juliann; Salisbury, Christine

2012-01-01

Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver-child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined,…

The relationship between health-related quality of life and social networks among Japanese family caregivers for people with disabilities.

Science.gov (United States)

Arai, Hirokazu; Nagatsuka, Miwa; Hirai, Kei

2008-10-01

The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 +/- 13.34) were valid for statistical analyses (the available response rate was 19.15%). A significant difference in HRQOL was identified between family caregivers and non-family caregivers. Further, in males (N = 101), the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144), it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

Science.gov (United States)

Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J

2013-01-01

Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive

Intentions of College Students to Serve as Informal Caregivers for Their Older Relatives: Theory of Planned Behavior Approach

Science.gov (United States)

Joshi, Gungeet; Gezan, Salvador; Delisle, Tony; Stopka, Christine; Pigg, Morgan; Tillman, Mark

2015-01-01

As the older adult population increases, the healthcare system is experiencing a shortage of professional health care providers and caregivers. Consequently, the role of family to serve as caregivers will expand to care for older relatives at home. Thus, a larger proportion of adult children will become caregivers, including young adults enrolled…

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

OpenAIRE

Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke HF; Cuijpers, Pim

2013-01-01

Background: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently kno...

Caregiver Burden, Quality Of Life And Vulnerability Towards Psychopathology In Caregivers Of Patients With Dementia/alzheimer's Disease

International Nuclear Information System (INIS)

Dawood, S.

2016-01-01

Objective: To identify caregivers' burden, evaluate quality of life in them; and predict anxiety and depression in caregivers of patients with Alzheimer's disease (AD). Study Design: Cross-sectional study. Place and Duration of Study: Neurology and Psychiatry Department of Lahore General Hospital (LGH), from January to December, 2013. Methodology: A purposive sample of 60 caregivers, who had been taking care of patients with AD for more than one year, were recruited from the study centre. The Zarit Burden Interview was used to assess caregiver burden. The brief version of World Health Organization Quality of Life Scale to assess quality of life and anxiety and depression subscales of symptom checklist-revised were administered to assess caregivers' vulnerability towards psychopathology. Results: There were 6 males and 54 females caregivers with mean age of 37.60 ± 14.87 years. The burden of caregiving had negative relationship (-0.57; -0.50; -0.48; and -0.50, respectively) with physical, psychological, social, and environmental domains of quality of life. Neither caregiver burden nor quality of life predicted for anxiety and depression in the caregivers. Conclusion: Caregiver burden may impair quality of life of caregivers but results imply the need to identify the interpersonal and intrapersonal characteristics of caregivers that buffered the adverse effects of caregiver burden and impaired the quality of life on psychological well being of the patients with AD. (author)

HIV/AIDS and older adults in Cameroon: Emerging issues and ...

African Journals Online (AJOL)

Perpetua Lum Tanyi

2018-02-06

Feb 6, 2018 ... ... social policy are discussed. Keywords: HIV/AIDS, older adults, African family, caregiving, Cameroon ...... and treatment that may be spread out over the full period of illness. ..... anxiety, relationships, grief, loss and addictions.

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial

Science.gov (United States)

Leung, Phuong; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Spector, Aimee; Roberts, Steven; de Waal, Hugo; Orgeta, Vasiliki

2017-01-01

Background Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and findings A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups

Guardians of health: the dimensions of elder caregiving among women in a Mexico City neighborhood.

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Mendez-Luck, Carolyn A; Kennedy, David P; Wallace, Steven P

2009-01-01

Little is known about the family care of older adults in Mexico and the role of women in this process. To begin to fill this knowledge gap, this paper describes how a small sample of low-income women in one Mexico City neighborhood conceptualized the caregiver role and identified the forms of assistance they gave to their older relatives on a daily basis. A grounded theory approach was used to collect and analyze the data. Forty-one semi-structured qualitative interviews were conducted with female caregivers. The age of participants was between 19 and 83 years, and care recipients between 56 and 92 years. The relationship of caregiver to care recipient was wife, daughter, daughter-in-law, grand-daughter, sibling, and other relative. The mean length of time providing care was 5 years. Most participants were not employed outside the home, and the median monthly household income was 2000 pesos. We found that caregiving was a life-changing event, with 27 of 41 participants viewing themselves as guardians. Caregivers' emphasis was on care recipients' emotional needs in order to provide "the most precious gift" of "time and attention." Two forms of assistance were 'keeping company' and 'watching out' as safeguards against poor health or further decline in health. These findings increase the cultural understanding of caregiving in Mexico. Further research is needed to test the caregiving concepts identified in this study.

Anger and health in dementia caregivers: exploring the mediation effect of optimism.

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López, J; Romero-Moreno, R; Márquez-González, M; Losada, A

2015-04-01

Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood. The aim of this study was to explore the potential mediating role of optimism in the relationship between anger and caregivers' physical health. Dementia caregivers (n = 108) were interviewed and filled out instruments assessing their anger (reaction), optimism and health (vitality). A mediational model was tested to determine whether optimism partially mediated the relationship between anger and vitality. Angry reaction was negatively associated with optimism and vitality; optimism was positively associated with vitality. Finally, the relationship between angry reaction and vitality decreased when optimism was entered simultaneously. A non-parametric bootstrap approach confirmed that optimism significantly mediated some of the relationship between angry reaction and vitality. These findings suggest that low optimism may help explain the association between caregivers' anger and reduced sense of vitality. The results provide a specific target for intervention with caregivers. Copyright © 2013 John Wiley & Sons, Ltd.

Daily Stressors and Adult Day Service Use by Family Caregivers: Effects on Depressive Symptoms, Positive Mood and DHEA-S

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Zarit, Steven H.; Whetzel, Courtney A.; Kim, Kyungmin; Femia, Elia E.; Almeida, David M.; Rovine, Michael J.; Klein, Laura Cousino

2014-01-01

Objectives This study examines effects of daily use of adult day services (ADS) programs by caregivers of individuals with dementia (IWD) on a salivary biomarker of stress reactivity, dehydroepiandrosterone-sulfate (DHEA-S), and whether these effects on DHEA-S are associated with daily variability in positive mood and depressive symptoms. Design We used a daily diary design of 8 consecutive days with alternation of intervention (ADS) and non-intervention days to evaluate within- and between-person effects of the intervention. Setting Caregivers were interviewed daily by telephone at home. Participants 151 family caregivers of IWD who were using ADS. Measurements Saliva samples were collected from caregivers 5 times a day for 8 consecutive days and were assayed for DHEA-S. Daily telephone interviews assessed daily stressors and mood. Results DHEA-S levels were significantly higher on days following ADS use. Daily DHEA-S levels covaried significantly with daily positive mood, but not depressive symptoms. Conclusions These results demonstrate an association of ADS use by family caregivers and higher DHEA-S levels on the next day. Prior research has found that higher DHEA-S levels are protective against the physiological damaging effects of stressor exposure and may reduce risks of illness. Regular use of ADS may help reduce depletion of DHEA-S and allow the body to mount a protective and restorative response to the physiological demands of caregiving. To our knowledge, this is the first study to examine DHEA-S levels across the day in connection with an intervention that affected daily exposure to stressors. PMID:24566240

Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study.

Science.gov (United States)

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace

2013-05-01

To report the moderating effects of work-related conditions and interactive family-care-giving variables, including mutuality and preparedness, on caregiver role strain and mental health for family caregivers of patients with dementia. Few studies have examined the interrelationships among caregivers' working conditions, care-giving dynamics and caregiver well-being. Cross-sectional, correlational study. Data were collected by self-completed questionnaires from 176 primary family caregivers of patients with dementia in Taiwan from May 2005-January 2006. Caregiver role strain and mental health were analysed by multiple regressions using a hierarchical method to enter independent variables and two- and three-way interaction terms after controlling for caregiver age and gender, employment status, and work flexibility and the simple effect of each independent variable. More preparedness was associated with less role strain for family caregivers with less work/care-giving conflict. More care-giving demand was associated with poorer mental health only for caregivers with low work/care-giving conflict and with average and low preparedness, but not high preparedness. For family caregivers with less work/care-giving conflict, more preparedness decreased role strain and maintained mental health even when care-giving demand was high. These results provide a knowledge base for understanding complex family caregiver phenomena and serve as a guide for developing interventions. Future studies with longitudinal follow-ups are suggested to explore actual causal relationships. © 2012 Blackwell Publishing Ltd.

Distress in cancer patients and their caregivers and association with the caregivers' perception of dyadic communication.

Science.gov (United States)

Haun, Markus W; Sklenarova, Halina; Brechtel, Anette; Herzog, Wolfgang; Hartmann, Mechthild

2014-01-01

Discrepancies within cancer-affected couples can disrupt security within the dyadic relationship during cancer treatment. This study investigated the patients' and caregivers' distress and associations between the caregivers' perception of the patients' degree of open communication and their distress. In a cross-sectional survey, 189 pairs of cancer patients (31% gastrointestinal, 34% lung, 35% urological cancers) and their partners were assessed for distress (QSC-R10), depression and anxiety (PHQ-2/GAD-2). The caregivers also reported their perception of the patients' degree of disclosure regarding cancer-relevant topics (CCAT-F Disclosure subscale), caregiver strain (CSI), and unmet needs (SCNS-P&C). Prevalences of clinically significant distress were calculated. Associations were calculated between the caregivers' and the patients' ratings and between the caregivers' distress and their perception of the patients' degree of disclosure. 33% of the caregivers and 25% of the patients exhibited significant anxiety, with a tendency towards a higher frequency in the caregivers (p = 0.10). The prevalence of depression was lower but equally high in caregivers and patients. The caregivers' perceived non-disclosure by the patients was primarily associated with their anxiety (r = 0.31), disease-specific distress (r = 0.32), and psychological/emotional needs (r = 0.35). The identification of caregivers reporting problems in communicating with patients should be pursued in clinical practice as this might indicate that caregivers are particularly burdened. © 2014 S. Karger GmbH, Freiburg.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

Directory of Open Access Journals (Sweden)

Barbara Gomes

Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure

Neuro-oncology family caregivers are at risk for systemic inflammation.

Science.gov (United States)

Sherwood, Paula R; Price, Thomas J; Weimer, Jason; Ren, Dianxu; Donovan, Heidi S; Given, Charles W; Given, Barbara A; Schulz, Richard; Prince, Jennifer; Bender, Catherine; Boele, Florien W; Marsland, Anna L

2016-05-01

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.

Double- and Triple-Duty Caregiving Men: An Examination of Subjective Stress and Perceived Schedule Control.

Science.gov (United States)

DePasquale, Nicole; Zarit, Steven H; Mogle, Jacqueline; Moen, Phyllis; Hammer, Leslie B; Almeida, David M

2018-04-01

Based on the stress process model of family caregiving, this study examined subjective stress appraisals and perceived schedule control among men employed in the long-term care industry (workplace-only caregivers) who concurrently occupied unpaid family caregiving roles for children (double-duty child caregivers), older adults (double-duty elder caregivers), and both children and older adults (triple-duty caregivers). Survey responses from 123 men working in nursing home facilities in the United States were analyzed using multiple linear regression models. Results indicated that workplace-only and double- and triple-duty caregivers' appraised primary stress similarly. However, several differences emerged with respect to secondary role strains, specifically work-family conflict, emotional exhaustion, and turnover intentions. Schedule control also constituted a stress buffer for double- and triple-duty caregivers, particularly among double-duty elder caregivers. These findings contribute to the scarce literature on double- and triple-duty caregiving men and have practical implications for recruitment and retention strategies in the health care industry.

[Ressignification of life of caregivers of elderly patients with cancer].

Science.gov (United States)

dos Anjos, Anna Cláudia Yokoyama; Zago, Márcia Maria Fontão

2014-01-01

The study aimed to analyze the process of becoming a caregiver of elderly patients with cancer, in chemotherapy, in the home context. This is an exploratory study with theoretical and methodological orientation of interpretative anthropology and ethnographic case study. Data were collected from January to September 2009, with four caregivers through semi-structured interviews, observation and consultation records. With data analysis were built four units of meaning. In this paper 'we are focusing the thematic unity "The ressignification of caregiver's life", composed by positive aspects of caregiving activities and of helping to overcome difficulties, such as union, solidarity, opportunity for reapproximation. The difficulties were more evident, especially being unprepared to care at home, which led to changes in the caregiver's familiar and social relationships, resulting in impairment of physical, emotional and social aspects. The nurse, as an agent of care, must provide adequate qualification to the caregivers, helping them in coping with the disease and improving the patient-caregiver-service relationship.

Caregiver Sensitivity, Contingent Social Responsiveness, and Secure Infant Attachment

Science.gov (United States)

Dunst, Carl J.; Kassow, Danielle Z.

2008-01-01

Findings from two research syntheses of the relationship between caregiver sensitivity and secure infant attachment and one research synthesis of factors associated with increased caregiver use of a sensitive interactional style are presented. The main focus of analysis was the extent to which different measures of caregiver contingent social…

Self-transcendence and family caregivers of adults with dementia.

Science.gov (United States)

Acton, G J; Wright, K B

2000-06-01

Research has documented that caring for a family member with dementia is stressful and burdensome. However, difficult life experiences such as fear, loss, and grief may help persons move beyond a concern for self toward a larger perspective and concern for others. Both positive and negative experiences can promote positive movement toward growth and development. This movement has been described as self-transcendence, or the ability to look beyond the self and present difficulties, to extend concern to others, and to find personal meaning and wholeness in the context of life-changing events. The family caregiving experience with its inherent difficulties might provide the impetus for such a movement toward self-transcendence. The purpose of this article is to examine the concept of self-transcendence, explore its linkages to the caregiving experience, and suggest potential strategies to assist family caregivers to achieve self-transcendence.

Facilitating out-of-home caregiving through health information technology: survey of informal caregivers' current practices, interests, and perceived barriers.

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Zulman, Donna M; Piette, John D; Jenchura, Emily C; Asch, Steven M; Rosland, Ann-Marie

2013-07-10

Many patients with chronic conditions are supported by out-of-home informal caregivers-family members, friends, and other individuals who provide care and support without pay-who, if armed with effective consumer health information technology, could inexpensively facilitate their care. We sought to understand caregivers' use of, interest in, and perceived barriers to health information technology for out-of-home caregiving. We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers' technology use for caregiving. Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients' health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving. Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers' interest

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism

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Marsack, Christina N.; Samuel, Preethy S.

2017-01-01

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden…

The relationship between health-related quality of life and social networks among Japanese family caregivers for people with disabilities

Directory of Open Access Journals (Sweden)

Nagatsuka Miwa

2008-10-01

Full Text Available Abstract Aims The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. Methods The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 ± 13.34 were valid for statistical analyses (the available response rate was 19.15%. Results A significant difference in HRQOL was identified between family caregivers and non-family caregivers. Further, in males (N = 101, the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144, it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. Conclusion It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks.

The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

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Torabi Chafjiri R

2017-03-01

Full Text Available Razieh Torabi Chafjiri,1 Nasrin Navabi,2 Abbas Shamsalinia,2 Fatemeh Ghaffari2 1Gilan University of Medical Sciences, Rudsar Shahid Ansari Hospital, Rudsar, Gilan, Iran; 2Ramsar Nursing Care Research Center, School of Nursing and Midwifery, Babol University of Medical Sciences, Babol, Mazandaran, Iran Introduction: Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.Methods: This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson’s correlation coefficient at a significance level of 0.05.Results: The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was <5 years in 84.4% of the participants, while its mean was 4.2±2.5 years. The mean score of spiritual attitude was 108.77±6.20. The majority of the participants (49.3% had moderate and relatively favorable spiritual attitude (a score of 72–120, 27.8% had high or favorable spiritual attitude; 8.7% had mild burden, 54.4% had moderate burden

Invisible Care: Friend and Partner Care Among Older Lesbian, Gay, Bisexual, and Transgender (LGBT) Adults.

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Shiu, Chengshi; Muraco, Anna; Fredriksen-Goldsen, Karen

2016-01-01

Lesbian, gay, bisexual, and transgender (LGBT) older adult caregivers may encounter obstacles in obtaining health and aging services due to discrimination in service and legal systems. The caregiving relationships in LGBT communities also differ from the general population in that friends are providing a large portion of informal care. This article examines how the relational context of caregiving relates to caregiving demands and resources, which in turn, influence perceived stress and depressive symptomatology among older LGBT caregivers. Using data from the National Health, Aging, and Sexuality Study: Caring and Aging with Pride, this study examines 451 participants who are providing caregiving to partners and friends. Structural equation modeling was applied to estimate the associations among the caregiver-care recipient relationship and caregiving demands, resources, perceived stress, and depressive symptomatology. On average, as compared with those caring for partners, those who provided care to friends reported experiencing lower levels of caregiving demands and lower levels of social support. The lower caregiving demands correlated positively with both lower perceived stress and less severe depressive symptomatology; however, the lower levels of social support were related to higher perceived stress and higher depressive symptomatology. Caregiving provided by friends, which has long been under recognized, plays an important role in the LGBT community. Because lower levels of caregiving demands are offset by less social support, LGBT friend-caregivers experience similar levels of perceived stress and depressive symptomatology to those providing care to spouses and partners. Policy and service reforms are needed to better acknowledge the continuum of informal caregiving relationships.

Cultural Differences in Young Adults' Perceptions of the Probability of Future Family Life Events.

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Speirs, Calandra; Huang, Vivian; Konnert, Candace

2017-09-01

Most young adults are exposed to family caregiving; however, little is known about their perceptions of their future caregiving activities such as the probability of becoming a caregiver for their parents or providing assistance in relocating to a nursing home. This study examined the perceived probability of these events among 182 young adults and the following predictors of their probability ratings: gender, ethnicity, work or volunteer experience, experiences with caregiving and nursing homes, expectations about these transitions, and filial piety. Results indicated that Asian or South Asian participants rated the probability of being a caregiver as significantly higher than Caucasian participants, and the probability of placing a parent in a nursing home as significantly lower. Filial piety was the strongest predictor of the probability of these life events, and it mediated the relationship between ethnicity and probability ratings. These findings indicate the significant role of filial piety in shaping perceptions of future life events.

Satisfaction with Life of Schizophrenia Outpatients and Their Caregivers: Differences between Patients with and without Self-Reported Sleep Complaints

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Afonso, Pedro; Cañas, Fernando; Bobes, Julio; Bernardo Fernandez, Ivan; Guzman, Carlos

2013-01-01

Patients with schizophrenia often present sleep complaints, but its relationship with general satisfaction with life (SWL) and burden for caregivers has been understudied. We aimed to assess the differences in SWL between patients with and without self-reported sleep disturbances and that of their caregivers. In a noninterventional study, 811 schizophrenia adult outpatients were screened for their subjective perception of having (or not) sleep disturbances and evaluated with the Brief Psychiatric Rating Scale (BPRS) and the Pittsburgh Sleep Quality Index (PSQI). Patients self-reporting sleep disturbances were significantly more symptomatic (P < 0.001), presented significantly worse family support (P = 0.0236), and self-reported worse SWL in all domains. Caregivers of patients with schizophrenia self-reporting sleep disturbances also reported worse SWL in all domains, as compared to caregivers of patients without subjective sleep disturbances. Patient and caregivers' SWL was significantly correlated to patients' quality of sleep (P < 0.0001 for all domains). Patient' and caregivers' SWL was negatively affected by patients' poor quality of sleep. We found that patients self-reporting sleep disturbances showed greater symptom severity, worse quality of sleep, worse SWL, and less caregiver support. SWL was also worse for caregivers of patients with schizophrenia reporting sleep disturbances. PMID:24288609

Perceptions among primary caregivers about the etiology of delirium ...

African Journals Online (AJOL)

Objective: To study caregivers' perceptions about the cause of delirium and their distress caused by symptoms of delirium. Method: Adult caregivers of patients with delirium, who gave consent, were asked about their perceptions of the cause of delirium. Patients were assessed for delirium by using the delirium rating ...

Older Caregiving Parents: Division of Household Labor, Marital Satisfaction, and Caregiver Burden

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Essex, Elizabeth Lehr; Hong, Jinkuk

2005-01-01

Based on a sample of 126 families, this study investigated how division of household labor is related to marital satisfaction and caregiving burden among older married parents caring for adult children with intellectual disabilities. For mothers, greater spousal participation in household work and satisfaction with the division of labor were…

Concept Analysis: Alzheimer’s Caregiver Stress

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Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Honor’s, BA; Caserta, Michael

2015-01-01

AIM The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias. BACKGROUND Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. PMID:24787468

Caregiver experiences and perceptions of stroke | Thomas | Health ...

African Journals Online (AJOL)

Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available.

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors

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Tretteteig S

2017-12-01

Full Text Available Signe Tretteteig,1,2 Solfrid Vatne,3 Anne Marie Mork Rokstad1,3 1Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 2Faculty of Medicine, University of Oslo; Oslo, Norway; 3Faculty of Health Sciences and Social Care, Molde University College, Molde, Norway Background: In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. “Meaning-focused coping” describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers’ positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers’ experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers’ experiences and motivation in their caregiving role is explored. Methods: A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Findings: Family caregivers’ roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their “relationship-oriented coping” and experience of meaning. Conclusion: Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers’ own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase

Impact of Behavioral Symptoms in Dementia Patients on Depression in Daughter and Daughter-in-Law Caregivers.

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Lee, Juwon; Sohn, Bo Kyung; Lee, Hyunjoo; Seong, Sujeong; Park, Soowon; Lee, Jun-Young

2017-01-01

One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Ninety-five daughter (n = 47) and daughter-in-law (n = 48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress.

Accuracy of Caregiver Proxy Reports of Home Care Service Use.

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Chappell, Neena L; Kadlec, Helena

2016-12-01

Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.

Guided participation in cultural activity by toddlers and caregivers.

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Rogoff, B; Mistry, J; Göncü, A; Mosier, C

1993-01-01

In this Monograph, we examine how toddlers and their caregivers from four cultural communities collaborate in shared activities. We focus both on similarities across communities in processes of guided participation--structuring children's participation and bridging between their understanding and that of their caregivers--and on differences in how guided participation occurs. We examine the idea that a key cultural difference entails who is responsible for learning--whether adults take this responsibility by structuring teaching situations or whether children take responsibility for learning through observation and through participating in adult activities with caregivers' support. We speculate that these two patterns relate to cultural variation in the segregation of children from adult activities of their community and in emphasis on formal schooling. The four communities of our study vary along these lines as well as in other ways: a Mayan Indian town in Guatemala, a middle-class urban group in the United States, a tribal village in India, and a middle-class urban neighborhood in Turkey. In each community, we visited the families of 14 toddlers (aged 12-24 months) for an interview that was focused on child-rearing practices, which included observations of caregivers helping the toddlers operate novel objects spontaneously during adult activities. Results are based on systematic analysis of patterns of communication and attention in each family in each community, combining the tools of ethnographic description, graphic analysis, and statistics.(ABSTRACT TRUNCATED AT 250 WORDS)

The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden.

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Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia

Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.

Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

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Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S

2016-10-01

In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

NARCIS (Netherlands)

Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

2008-01-01

AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

NARCIS (Netherlands)

Zegwaard, M.I.; Aartsen, M.J.; Grypdonck, M.H.F.; Cuijpers, P.

2013-01-01

Background: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds

Caregiving process and caregiver burden: Conceptual models to guide research and practice

Directory of Open Access Journals (Sweden)

Brehaut Jamie

2004-01-01

Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Caregiving process and caregiver burden: Conceptual models to guide research and practice

Science.gov (United States)

Raina, Parminder; O'Donnell, Maureen; Schwellnus, Heidi; Rosenbaum, Peter; King, Gillian; Brehaut, Jamie; Russell, Dianne; Swinton, Marilyn; King, Susanne; Wong, Micheline; Walter, Stephen D; Wood, Ellen

2004-01-01

Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area. PMID:14723791

Effectiveness of case management among older adults with early symptoms of dementia and their primary informal caregivers: A randomized clinical trial

NARCIS (Netherlands)

Jansen, A.P.D.; van Hout, H.P.J.; Nijpels, G.; Rijmen, F.; Dröes, R.M.; Pot, A.M.; Schellevis, F.G.; Stalman, W.A.B.; van Marwijk, H.W.J.

2011-01-01

Background: It is believed that timely recognition and diagnosis of dementia is a pre-condition for improving care for both older adults with dementia and their informal caregivers. However, diagnosing dementia often occurs late in the disease. This means that a significant number of patients with

Caregiver roles in families affected by Huntington's disease

DEFF Research Database (Denmark)

Røthing, Merete; Malterud, Kirsti; Frich, Jan C

2013-01-01

AIM: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family. METHODOLOGY: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide...... for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family. CONCLUSIONS......: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how...

The relationship between family resiliency factors and caregiver-perceived duration of untreated psychosis in persons with first-episode psychosis.

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Mo'tamedi, Hadi; Rezaiemaram, Peyman; Aguilar-Vafaie, Maria E; Tavallaie, Abaas; Azimian, Mojtaba; Shemshadi, Hashem

2014-11-30

Although the family has an important role in the early detection and intervention of first-episode psychosis (FEP), there are few findings reporting associations between family strengths and early treatment-seeking experiences. This study aimed to investigate, within the framework of the resiliency model of family stress, adjustment, and adaptation, the association between family coping strategies, resource management factors and duration of untreated psychosis (DUP) in Iranian families with one adult child with FEP. Hundred and seven individuals referred to three medical centers in Tehran and diagnosed with FEP participated in this study. Caregiver-perceived DUP was measured via semi-structured interviews administered to primary caregivers. They also completed two questionnaires regarding family resources of stress management and family coping strategies. Data analysis indicated that the Family Inventory of Resources of Management (FIRM) total scale score did not significantly explain the variance of caregiver-perceived DUP, but one of the FIRM subscales, the Extended Family Social Support, and the Family Crisis-Oriented Personal Evaluation scale (F-COPES) total score and one its subscales, the Acquiring Social Support, explained a significant amount of the variance of caregiver-perceived DUP. The results suggest that higher family resiliency, especially social support, facilitates the family's appropriate adaptive reaction (i.e., treatment-seeking), with the consequent decrease of DUP. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Patient and caregiver congruence: the importance of dyads in heart failure care.

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Retrum, Jessica H; Nowels, Carolyn T; Bekelman, David B

2013-01-01

Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning. The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence. Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach. Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles. Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be

Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions.

Science.gov (United States)

Duggleby, Wendy; Williams, Allison; Ghosh, Sunita; Moquin, Heather; Ploeg, Jenny; Markle-Reid, Maureen; Peacock, Shelley

2016-05-27

The majority of care for older adults with multiple chronic conditions (MCC) is provided by family (including friends) caregivers. Although caregivers have reported positive benefits to caregiving they also experience decreases in their physical and mental health. As there is a critical need for supportive interventions for this population, it is important to know what influences the health of family caregivers of persons with MCC. This research examined relationships among the changes from baseline to 6 months in health related quality of life (SF12v2) of family caregivers caring for older adults with multiple chronic conditions and the following factors: a) demographic variables, b) gender identity [Bem Sex Role Inventory (BSRI)] c) changes in general self-efficacy [General Self Efficacy Scale (GSES) (baseline to 6 months) and d)) changes in caregiver burden [Zarit Burden Inventory (ZBI)] baseline to 6 months. Specific hypothesis were based on a conceptual framework generated from a literature review. This is a secondary analysis of a study of 194 family caregivers who were recruited from two Canadian provinces Alberta and Ontario. Data were collected in-person, by telephone, by Skype or by mail at two time periods spaced 6 months apart. The sample size for this secondary analysis was n = 185, as 9 participants had dropped out of the study at 6 months. Changes in the scores between the two time periods were calculated for SF12v2 physical component score (PCS) and mental component score (MCS) and the other main variables. Generalized Linear Modeling was then used to determine factors associated with changes in HRQL. Participants who had significantly positive increases in their MCS (baseline to 6 months) reported lower burden (ZBI, p gender identity (which incorporates assertive and instrumental approaches to caregiving), and confidence in the ability to deal with difficult situations was positively related to improvement in mental health for caregivers of

Psychometrics of the AAN Caregiver Driving Safety Questionnaire and contributors to caregiver concern about driving safety in older adults.

Science.gov (United States)

Carvalho, Janessa O; Springate, Beth; Bernier, Rachel A; Davis, Jennifer

2018-03-01

ABSTRACTBackground:The American Academy of Neurology (AAN) updated their practice parameters in the evaluation of driving risk in dementia and developed a Caregiver Driving Safety Questionnaire, detailed in their original manuscript (Iverson Gronseth, Reger, Classen, Dubinsky, & Rizzo, 2010). They described four factors associated with decreased driving ability in dementia patients: history of crashes or citations, informant-reported concerns, reduced mileage, and aggressive driving. An informant-reported AAN Caregiver Driving Safety Questionnaire was designed with these elements, and the current study was the first to explore the factor structure of this questionnaire. Additionally, we examined associations between these factors and cognitive and behavioral measures in patients with mild cognitive impairment or early Alzheimer's disease and their informants. Exploratory factor analysis revealed a four-component structure, consistent with the theory behind the AAN scale composition. These four factor scores also were significantly associated with performance on cognitive screening instruments and informant reported behavioral dysfunction. Regressions revealed that behavioral dysfunction predicted caregiver concerns about driving safety beyond objective patient cognitive dysfunction. In this first known quantitative exploration of the scale, our results support continued use of this scale in office driving safety assessments. Additionally, patient behavioral changes predicted caregiver concerns about driving safety over and above cognitive status, which suggests that caregivers may benefit from psychoeducation about cognitive factors that may negatively impact driving safety.

Five-Factor Personality Traits and Subjective Health Among Caregivers: The Role of Caregiver Strain and Self-Efficacy

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Löckenhoff, Corinna E.; Duberstein, Paul R.; Friedman, Bruce; Costa, Paul T.

2011-01-01

This study examined the association among caregivers’ five-factor personality traits and subjective health with particular emphasis on the role of two theoretically implicated mediators: multi-domain self-efficacy and caregiver strain. The sample comprised 536 informal caregivers (mean age = 62.9 years, SD = 19.9, 72% female, 98% White) of community-dwelling older adults with multiple functional impairments. Both physical health and mental health were negatively associated with neuroticism and positively associated with extraversion and conscientiousness. Agreeableness and openness were associated with better subjective mental health and physical health, respectively. Multiple mediation analyses indicated that self-efficacy mediated all observed associations between personality and subjective health, whereas caregiver strain selectively mediated the associations of neuroticism and agreeableness with mental health. PMID:21417534

Personhood-Based Dementia Care: Using the Familial Caregiver as a Bridging Model for Professional Caregivers

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Michael Gabriel Fetterolf

2015-05-01

Full Text Available With biomedicine at the forefront of our culture's understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer's disease in nursing homes or long-term care facilities that do not always regard the sufferers' well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer's sufferer. Furthermore, through the modeling of professional caregiving strategies, I show how one might form meaningful relationships in long-term care facilities, and likewise provide the aging and afflicted person with forms of healing.

“They laugh when I sing”: perceived effects of caregiver social ...

African Journals Online (AJOL)

Objective: Social support provided to caregivers of children has been shown to be protective for caregiver health, parenting and child psychosocial outcomes. However, little work in Southern Africa provides insight on the relationship between caregiver social support and child wellbeing. This report discusses exploratory ...

'They don't understand…you cut yourself in order to live.' Interpretative repertoires jointly constructing interactions between adult women who self-harm and professional caregivers.

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Lindgren, Britt-Marie; Oster, Inger; Aström, Sture; Hällgren Graneheim, Ulla

2011-01-01

The aim of the study was to illuminate interpretative repertoires that jointly construct the interaction between adult women who self-harm and professional caregivers in psychiatric inpatient care. Participant observations and informal interviews were conducted among six women who self-harm and their professional caregivers in two psychiatric inpatient wards, and analysed using the concept of interpretative repertoires from the discipline of discursive psychology. The analysis revealed four interpretative repertoires that jointly constructed the interaction. The professional caregivers used a "fostering repertoire" and a "supportive repertoire" and the women who self-harmed used a "victim repertoire" and an "expert repertoire." The women and the caregivers were positioned and positioned themselves and people around them within and among these interpretative repertoires to make sense of their experiences of the interaction. It was necessary to consider each woman's own life chances and knowledge about herself and her needs. The participants made it clear that it was essential for them to be met with respect as individuals. Professional caregivers need to work in partnership with individuals who self-harm-experts by profession collaborating with experts by experience. Caregivers need to look beyond behavioural symptoms and recognise each individual's possibilities for agency.

Antecedents and consequences of caregiving structure on young mothers and their infants.

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Arnold, Anna; Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace

2011-10-01

This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother's report of herself as a caregiver and her selection of the baby's father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby's father. While mother's self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.

Caregiving burden in foreign domestic workers caring for frail older adults in Singapore.

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Ha, Ngoc Huong Lien; Chong, Mei Sian; Choo, Robin Wai Munn; Tam, Wai Jia; Yap, Philip Lin Kiat

2018-03-21

Although foreign domestic workers (FDWs) play a significant role in caring for frail seniors in Singapore and are vulnerable to caregiving burden, there has been little research conducted hitherto. We explored caregiver burden and its determinants in this study. FDWs (N = 221, M age = 32.3, SD = 6.23) recruited from a hospital geriatric unit completed the Zarit Burden Interview (ZBI) administered in English, Bahasa Melayu, or Burmese. Univariate and multivariate regression were employed to investigate factors influencing caregiving burden in FDWs. Majority were Indonesians (60.0%), married (57.5%) with children (62.4%), with secondary-level education (59.7%), and providing care for >1 year (79.9%). Importantly, 25.1% reported physical health problems and 23.1% encountered language difficulties with employers. Univariate analysis revealed three significant factors associated with caregiving burden: nationality (p Indonesian and Burmese counterparts. The study highlights caregiver burden in FDWs and potential ways to alleviate it by empowering FDWs with dementia-specific caregiving skills, providing language training opportunities, and supporting particular FDW ethnic groups with more emotional and practical help.

Relationships between adult siblings

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Nives Ličen

2006-12-01

Full Text Available The author presents learning in private relationships between adult siblings. A concept of a family as microculture is presented, which is a source for giving explanation for random and opportunist learning. The author has used a biographic method of research. Using thematic life stories, which she has familiarized herself with through thematicalbiographical interviews is a basis to establish which events have served for learning in relationships between siblings.

Benefit finding for Chinese family caregivers of community-dwelling stroke survivors: A cross-sectional study.

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Mei, Yongxia; Wilson, Susan; Lin, Beilei; Li, Yingshuang; Zhang, Zhenxiang

2018-04-01

To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well-being (anxiety and depression) in Chinese family caregivers of community-dwelling stroke survivors. Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well-being in Chinese family caregivers are not well known. This study was a cross-sectional correlational design. Caregivers (n = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face-to-face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well-being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well-being of caregivers using process in spss 21.0. Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well-being of caregivers. This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety

Reducing the distance in distance-caregiving by technology innovation

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Lazelle E Benefield

2007-07-01

Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders

Child-rearing practices of primary caregivers of children with sickle cell disease: the perspective of professionals and caregivers.

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Noll, R B; McKellop, J M; Vannatta, K; Kalinyak, K

1998-04-01

To obtain caregiver and medical professional opinions regarding the child-rearing practices of caregivers of children with sickle cell diseases (SCD). We obtained self-reports of parenting practices from 48 caregivers of children with SCD and 48 caregivers of matched classroom comparison peers using the Child-Rearing Practices Report (CRPR). CRPR ratings were also obtained from 12 experts in pediatric SCD regarding their predictions of how a parent of a child with SCD would respond. The experts predicted differences in protectiveness, discipline, and excessive worry. Objective interim and lifetime illness severity scores were obtained for the children with SCD. Caregivers showed similarity between the two groups, disagreement with the experts, and minimal relationship to illness severity. Experts who work with children with chronic illnesses such as SCD seem to have stereotyped ideas that do not correspond with parental reports of their child-rearing practices, suggesting the need for careful clinical evaluations.

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy.

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Holroyd-Leduc, Jayna; Resin, Joyce; Ashley, Lisa; Barwich, Doris; Elliott, Jacobi; Huras, Paul; Légaré, France; Mahoney, Megan; Maybee, Alies; McNeil, Heather; Pullman, Daryl; Sawatzky, Richard; Stolee, Paul; Muscedere, John

2016-01-01

The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care. Older adults are the fastest growing segment of Canada's population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

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Orfila, Francesc; Coma-Solé, Montserrat; Cabanas, Marta; Cegri-Lombardo, Francisco; Moleras-Serra, Anna; Pujol-Ribera, Enriqueta

2018-01-22

The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). Prevalence of risk of abuse is

Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes.

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Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C

2014-08-01

Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.

Latent Fairness in Adults' Relationship-Based Moral Judgments.

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Hao, Jian; Liu, Yanchun; Li, Jiafeng

2015-01-01

Can adults make fair moral judgments when individuals with whom they have different relationships are involved? The present study explored the fairness of adults' relationship-based moral judgments in two respects by performing three experiments involving 999 participants. In Experiment 1, 65 adults were asked to decide whether to harm a specific person to save five strangers in the footbridge and trolley dilemmas in a within-subject design. The lone potential victim was a relative, a best friend, a person they disliked, a criminal or a stranger. Adults' genetic relatedness to, familiarity with and affective relatedness to the lone potential victims varied. The results indicated that adults made different moral judgments involving the lone potential victims with whom they had different relationships. In Experiment 2, 306 adults responded to the footbridge and trolley dilemmas involving five types of lone potential victims in a within-subject design, and the extent to which they were familiar with and affectively related to the lone potential victim was measured. The results generally replicated those of Experiment 1. In addition, for close individuals, adults' moral judgments were less deontological relative to their familiarity with or positive affect toward these individuals. For individuals they were not close to, adults made deontological choices to a larger extent relative to their unfamiliarity with or negative affect toward these individuals. Moreover, for familiar individuals, the extent to which adults made deontological moral judgments more closely approximated the extent to which they were familiar with the individual. The adults' deontological moral judgments involving unfamiliar individuals more closely approximated their affective relatedness to the individuals. In Experiment 3, 628 adults were asked to make moral judgments with the type of lone potential victim as the between-subject variable. The results generally replicated those of the previous

Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease

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Iavarone A

2014-07-01

Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the ­State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored

Does caregiver well-being predict stroke survivor depressive symptoms? A mediation analysis.

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Grant, Joan S; Clay, Olivio J; Keltner, Norman L; Haley, William E; Wadley, Virginia G; Perkins, Martinique M; Roth, David L

2013-01-01

Studies suggest that family caregiver well-being (ie, depressive symptoms and life satisfaction) may affect stroke survivor depressive symptoms. We used mediation analysis to assess whether caregiver well-being might be a factor explaining stroke survivor depressive symptoms, after controlling for demographic factors and stroke survivor impairments and problems. Caregiver/stroke participant dyads (N = 146) completed measures of stroke survivor impairments and problems and depressive symptoms and caregiver depressive symptoms and life satisfaction. Mediation analysis was used to examine whether caregiver well-being mediated the relationship between stroke survivor impairments and problems and stroke survivor depressive symptoms. As expected, more stroke survivor problems and impairments were associated with higher levels of stroke survivor depressive symptoms (P mediated by caregiver life satisfaction (29.29%) and caregiver depressive symptoms (32.95%). Although these measures combined to account for 40.50% of the relationship between survivor problems and impairments and depressive symptoms, the direct effect remained significant. Findings indicate that stroke survivor impairments and problems may affect family caregivers and stroke survivors and a high level of caregiver distress may result in poorer outcomes for stroke survivors. Results highlight the likely importance of intervening with both stroke survivors and family caregivers to optimize recovery after stroke.

Satisfaction with Life of Schizophrenia Outpatients and Their Caregivers: Differences between Patients with and without Self-Reported Sleep Complaints

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Sofia Brissos

2013-01-01

Full Text Available Patients with schizophrenia often present sleep complaints, but its relationship with general satisfaction with life (SWL and burden for caregivers has been understudied. We aimed to assess the differences in SWL between patients with and without self-reported sleep disturbances and that of their caregivers. In a noninterventional study, 811 schizophrenia adult outpatients were screened for their subjective perception of having (or not sleep disturbances and evaluated with the Brief Psychiatric Rating Scale (BPRS and the Pittsburgh Sleep Quality Index (PSQI. Patients self-reporting sleep disturbances were significantly more symptomatic (P<0.001, presented significantly worse family support (P=0.0236, and self-reported worse SWL in all domains. Caregivers of patients with schizophrenia self-reporting sleep disturbances also reported worse SWL in all domains, as compared to caregivers of patients without subjective sleep disturbances. Patient and caregivers’ SWL was significantly correlated to patients’ quality of sleep (P<0.0001 for all domains. Patient’ and caregivers’ SWL was negatively affected by patients’ poor quality of sleep. We found that patients self-reporting sleep disturbances showed greater symptom severity, worse quality of sleep, worse SWL, and less caregiver support. SWL was also worse for caregivers of patients with schizophrenia reporting sleep disturbances.

The applicability of the decisional conflict scale in nursing home placement decision among Chinese family caregivers: A mixed methods approach

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Yu-Ping Chang

2017-12-01

Full Text Available This study aimed to 1 examine relationships between uncertainty, perceived information, personal values, social support, and filial obligation among Chinese family caregivers faced with nursing home placement of an older adult family member with dementia; and 2 describe the applicability of the Decisional Conflict Scale in nursing home placement decision making among Chinese family caregivers through the integration of quantitative and qualitative data. We used a mixed-methods approach. Quantitative data analysis consisted of descriptive and correlational statistics. We utilized a thematic analysis for the qualitative data. Data transformation and data comparison techniques were used to combine qualitative and quantitative data. Thirty Chinese family caregivers living in Taiwan caring for an older adult with dementia participated in this study. We found a significant association among the quantitative findings, which indicated that perceived information, personal values, social support, and filial obligation, and nursing home placement decisional conflict. Mixed-method data analysis additionally revealed that conflicting differences existed between the traditional role of Chinese family collective decision making and the contemporary role of single family member surrogate decision making. Although the Decisional Conflict Scale can be utilized when exploring nursing home placement for an older adult with dementia among Chinese family caregivers, applicability issues existed regarding cultural beliefs and values related to filial piety and family collectivism. Findings strongly support the need for researchers to consider cultural beliefs and values when selecting tools that assess health-related decision making across cultures. Further research is needed to explore the role culture plays in nursing home decision making.

Mediational Model of Multiple Sclerosis Impairments, Family Needs, and Caregiver Mental Health in Guadalajara, Mexico

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Melody N. Mickens

2018-01-01

Full Text Available Individuals with multiple sclerosis (MS, especially those living in Latin America, often require assistance from family caregivers throughout the duration of the disease. Previous research suggests that family caregivers may experience positive and negative outcomes from providing care to individuals with MS, but few studies have examined the unmet needs of individuals providing care to family members with MS and how these unmet needs may mediate the relationship between MS symptoms and caregiver mental health. The current study examined the relationships among MS impairments (functional, neurological, cognitive, behavioral, and emotional, unmet family needs (household, informational, financial, social support, and health, and caregiver mental health (satisfaction with life, anxiety, burden, and depression in a sample of 81 MS caregivers from Guadalajara, Mexico. A structural equation model demonstrated the mediational effect of unmet family needs on the relationship between MS impairments and caregiver mental health. These findings suggest that intervention research on MS caregivers in Latin America may consider focusing on caregiver mental health problems by addressing unmet family needs and teaching caregivers ways to manage the impairments of the individual with MS.

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

OpenAIRE

Christian J. Hendriksz MD; Christine Lavery; Mahmut Coker MD; Sema Kalkan Ucar MD; Mohit Jain PhD; Lisa Bell PhD; Christina Lampe MD

2014-01-01

This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with fami...

Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia

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Zahid Muhammad A

2010-09-01

Full Text Available Abstract Background Although the burden experienced by families of people with schizophrenia has long been recognized as one of the most important consequences of the disorder, there are no reports from the Arab world. Following the example of the five - nation European (EPSILON study, we explored the following research question: How does the relationship between domains of caregiving (as in the Involvement Evaluation Questionnaire - IEQ-EU and caregiver psychic distress on the one hand, and caregiver's/patient's socio-demographics, clinical features and indices of quality of care, on the other hand, compare with the pattern in the literature? Method Consecutive family caregivers of outpatients with schizophrenia were interviewed with the IEQ-EU. Patients were interviewed with measures of needs for care, service satisfaction, quality of life (QOL and psychopathology. Results There were 121 caregivers (66.1% men, aged 39.8. The IEQ domain scores (total: 46.9; tension: 13.4; supervision: 7.9; worrying: 12.9; and urging: 16.4 were in the middle of the range for the EU data. In regression analyses, higher burden subscale scores were variously associated with caregiver lower level of education, patient's female gender and younger age, as well as patient's lower subjective QOL and needs for hospital care, and not involving the patient in outdoor activities. Disruptive behavior was the greatest determinant of global rating of burden. Conclusion Our results indicate that, despite differences in service set-up and culture, the IEQ-EU can be used in Kuwait as it has been used in the western world, to describe the pattern of scores on the dimensions of caregiving. Differences with the international data reflect peculiarities of culture and type of service. Despite generous national social welfare provisions, experience of burden was the norm and was significantly associated with patient's disruptive behavior. The results underscore the need for provision

Examining the relationship between health-related quality of life in individuals with spinal cord injury and the mental health of their caregivers in Colombia, South America.

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Coleman, Jennifer A; Harper, Leia A; Perrin, Paul B; Olivera, Silvia L; Perdomo, Jose L; Arango, Jose A; Arango-Lasprilla, Juan C

2013-12-01

Although considerable research has been carried out on family caregivers of individuals with various types of disabilities, spinal cord injury (SCI) caregivers have received considerably less attention in terms of research, especially in regions such as Latin America. This study examined the relationship between health-related quality of life (HRQOL) in individuals with SCI and their family caregiver's mental health in Neiva, Colombia. Thirty-four individuals with SCI and their primary caregivers (34 dyads; n=68) from the Foundation for the Integral Development of People with Disabilities in Neiva, Colombia, were included in this study. Individuals with SCI completed eight subscales of the SF-36 that assessed HRQOL. Five aspects of caregiver mental health were assessed, including burden (Zarit Burden Interview), satisfaction with life (Satisfaction with Life Scale), depression (Patient Health Questionnaire-9), self-esteem (Rosenberg Self-Esteem Scale), and anxiety (State Trait Anxiety Inventory). A series of multiple regressions uncovered strong associations among the HRQOL of individuals with SCI and various aspects of caregiver mental health. In these regressions, patient physical functioning and pain were independently related to caregiver burden; patient pain and general health were independently related to caregiver satisfaction with life; and patient pain was independently related to caregiver anxiety. HRQOL in individuals with SCI was robustly related to their caregiver's mental health, suggesting that the two sets of variables are closely linked. These findings suggest that caregiver mental health should be a central part of SCI rehabilitation interventions, especially in Latin America.

Relationship Churning, Physical Violence, and Verbal Abuse in Young Adult Relationships

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Halpern-Meekin, Sarah; Manning, Wendy D.; Giordano, Peggy C.; Longmore, Monica A.

2013-01-01

Young adults' romantic relationships are often unstable, commonly including breakup--reconcile patterns. From the developmental perspective of emerging adulthood exploration, such relationship "churning" is expected; however, minor conflicts are more common in churning relationships. Using data from the Toledo Adolescent Relationships…

Jealousy and relationship satisfaction among Indonesian dating adults.

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Himawan, Karel K

2017-12-01

This study aimed to explore the link between jealousy and relationship satisfaction among dating adults in Indonesia. A survey of 150 adults showed that, while the overall level of jealousy was not significantly correlated with relationship satisfaction, correlations exist between relationship satisfaction and certain aspects of jealousy. © 2017 The Institute of Psychology, Chinese Academy of Sciences and John Wiley & Sons Australia, Ltd.

Burden and Expressed Emotion of Caregivers in Cases of Adult Substance Use Disorder with and Without Attention Deficit/Hyperactivity Disorder or Autism Spectrum Disorder

NARCIS (Netherlands)

Kronenberg, Linda M.; Goossens, Peter J. J.; van Busschbach, Jooske T.; van Achterberg, Theo; van den Brink, Wim

Objective To identify and compare caregiver burden and expressed emotion (EE) in adult substance use disorder (SUD) patients with and without co-occurring attention deficit/hyperactivity disorder (ADHD) or autism spectrum disorder (ASD). To examine possible differences in correlations between

Delirium and the Family Caregiver: The Need for Evidence-based Education Interventions.

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Carbone, Meredith K; Gugliucci, Marilyn R

2015-06-01

Delirium, an acute confusional state, is experienced by many older adults. Although there is substantial research on risk factors and etiology, we hypothesized that there is a dearth of information on educating the family caregivers of delirious older patients. A date-specific (2000-2013) literature review of articles, written in English, was conducted in several major databases using keyword searches. This systematic review focused on 2 objectives: (1) investigate published studies on the impact of delirium on the family regarding caring for a loved one; and (2) determine if there are interventions that have provided family caregivers with education and/or coping skills to recognize and/or manage delirium. A systematic elimination provided outcomes that met both objectives. Thirty articles addressed impact on family caregivers (objective 1); only 7 addressed caregiver education regarding the delirious state of a loved one (objective 2). Few studies consider the impact of delirium on family caregivers and even fewer studies focus on how to manage delirium in loved ones. With increased risks to older adult patients, high cost of care, and the preventable nature of delirium, family caregiver education may be an important tactic to improve outcomes for both patient and caregiver. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caregiver information search behavior for alternative transportation.

Science.gov (United States)

2013-08-01

Numerous factors contribute to cessation of driving, ranging from a decline in cognitive : capability to a decrease in overall physical health. When driving cessation occurs, : responsibility often falls on adult child caregivers to extend the person...

Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

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Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2017-06-20

To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

Caregiver Burden in Alcohol Dependence Syndrome

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Ramanujam Vaishnavi

2017-01-01

Full Text Available Background. Alcoholism is a major threat to the individual as well as the society and the maximum burden of the illness is borne by the family. Aim. The study is aimed at assessing the pattern of burden on the caregivers of alcohol dependent patients and at assessing the relationship between the severity of dependence and the burden on caregivers. Settings and Design. Cross-sectional descriptive study conducted in the Department of Psychiatry, Sri Ramachandra Medical College and Research Institute. Materials and Methods. A cross-sectional assessment was done in 200 patients with alcohol dependence and their caregivers. The severity of dependence and the pattern of burden on caregivers were assessed. Statistical Analysis. The data thus collected was analyzed using SPSS version 20. Results. The study demonstrates that caregivers of alcohol dependent patients reported significant objective burden and subjective burden. Furthermore, the severity of alcohol dependence and the domains of burden such as financial burden, disruption of family interaction, and disruption of family routine activities were positively correlated with high level of significance. Conclusion. The current study has illustrated that all the caregivers experienced significant amount of burden which has to be addressed for better treatment outcome of the patients.

Reflective analysis of the self-care ability of home caregivers

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Sheila Cristina Clementino de Oliveira

2017-03-01

Full Text Available Objective: The constant dedication of the caregivers put their health at risk, especially for those whose care is provided only for themselves, which makes them overwhelmed. The daily burden of chores and care of the patient ends up compromising self-care and general health. This study aimed to reflect on the self-care ability of home caregivers. Methods: The methodology was descriptive through a qualitative approach that used the subjectivity of observers in the daily dynamics of dependent patients caregivers. Results and Discussion: The results showed that 40% of caregivers reported good family relationships and gratitude in the realization of care; 60% reported conflicts in relationship and sometimes overload and obligation. Most caregivers reported having difficulties in performing all care, because do not have someone to share the tasks with, which hinders the realization of self-care. Caregivers reported lack of availability for leisure — a common condition in the act of caring —, and, when they do it, feel uncomfortable, as they are doing something wrong leaving the bedridden who requires care, which leads to physical and emotional exhaustion. Conclusion: It follows that the act of care is to give yourself in favor of the other, is to change the entire life expectancy because of the other, so it is extremely important the awareness of informal caregivers in relation to self-care.

Supporting Adults With Alzheimer's Disease and Related Major Neurocognitive Disorders and Their Caregivers: Effective Occupational Therapy Interventions.

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Smallfield, Stacy

Occupational therapy practitioners play a significant role in supporting adults with Alzheimer's disease and related major neurocognitive disorders, as well as their caregivers, through all phases of the disease process. This editorial highlights the systematic reviews completed in collaboration with the American Occupational Therapy Association's Evidence-Based Practice Project that summarize the evidence for the effectiveness of interventions within the scope of occupational therapy practice for this population. Readers are encouraged to translate and integrate this updated knowledge into everyday practice. Copyright © 2017 by the American Occupational Therapy Association, Inc.

The crucial role of the micro caregiving environment: Factors associated with attachment styles in alternative care in Chile.

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Garcia Quiroga, Manuela; Hamilton-Giachritsis, Catherine

2017-08-01

The distribution of attachment styles has been shown to differ between groups of children living with their parents and children placed in alternative care (AC), defined as residential or foster. However, this is the first study in Latin America to explore possible factors affecting the quality of attachment in children living in both residential and foster care. Two groups of children (N=57) were compared: one group living in Residential Homes (RC) and the other in Foster Care (FC) in Chile. Children's, caregivers' and structural factors (e.g., child: caregiver ratios) and their links with attachment styles were investigated. The micro caregiving environment (i.e., the specific individual child caregiver relationship), especially the caregivers' engagement, sensitivity, disciplinary control and affection, as well as some structural factors (i.e., child: caregiver ratios), were linked to attachment security in children. Specifically, better emotional caregiving and lower child-caregiver ratios were associated with higher rates of secure attachment. The association between quality of care (as measured by the HOME inventory) and attachment styles seems to be influenced by caregiver relationships (as measured by CCSERSS). Caregiver relationship factors (i.e., affection, engagement and sensitivity) directly impact the quality of the attachment children establish with them while living in AC. However, the relationships that caregivers establish with children under their care can be facilitated by good quality structural factors, particularly child-caregiver ratios. Copyright © 2017 Elsevier Ltd. All rights reserved.

Quality of life in caregivers of ADHD children and Diabetes patients

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Maria Conceição do Rosario

2016-07-01

Full Text Available Introduction: Studies have shown that the presence of ADHD causes great impairment in academic, social and professional activities, as well as in the quality of life (QoL of its patients. Similarly, the impact caused by other chronic disorders, such as diabetes, in the patient´s QoL has been emphasized in many studies. Despite its relevance, no study has yet investigated whether ADHD caregivers and diabetic patients would have similar QoL impairment. Objectives: This study was conducted in order to compare the QoL scores among ADHD caregivers and diabetic patients. Methods: We evaluated 63 caregivers of ADHD children treated at the Child and Adolescent Psychiatric Unit at the Federal University of São Paulo (UPIA-UNIFESP and 52 adult diabetic patients. Subjects were assessed with the World Health Organization quality of Life-Breef Version (WHOQOL-BREEF, the Beck and Hamilton depression scales, and the Adult Self-Report Scale. Results: When compared to the Brazilian normative data, ADHD caregivers had significantly lower scores in the social relations and environment WHOQOL domains. ADHD caregivers and diabetic patients had similar impairment in all WHOQOL domains, except for the physical domain. Conclusion: ADHD affects the QoL of the patient’s caregiver, with similar impairment when compared to the QoL of diabetic patients. These results emphasize the need for assessing QoL of the caregivers as part of the treatment strategies. They also emphasize the need for future studies with larger sample sizes comparing how the Qol is impacted in different chronic disorders.

Quality of Life in Caregivers of ADHD Children and Diabetes Patients.

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Andrade, Elisa Meirelles; Geha, Laysa Minella; Duran, Paula; Suwwan, Raphael; Machado, Felipe; do Rosário, Maria Conceição

2016-01-01

Studies have shown that the presence of attention-deficit hyperactivity disorder (ADHD) causes great impairment in academic, social, and professional activities as well as in the quality of life (QoL) of its patients. Similarly, the impact caused by other chronic disorders, such as diabetes, in the patient's QoL has been emphasized in many studies. Despite its relevance, no study has yet investigated whether ADHD caregivers and diabetic patients would have similar QoL impairment. This study was conducted in order to compare the QoL scores among ADHD caregivers and diabetic patients. We evaluated 63 caregivers of ADHD children treated at the Child and Adolescent Psychiatric Unit at the Federal University of São Paulo (UPIA-UNIFESP) and 52 adult diabetic patients. Subjects were assessed with the World Health Organization quality of Life-Bref Version (WHOQOL-BREF), the Beck and Hamilton depression scales, and the Adult Self-Report Scale. When compared to the Brazilian normative data, ADHD caregivers had significantly lower scores in the social relations and environment WHOQOL domains. ADHD caregivers and diabetic patients had similar impairment in all WHOQOL domains except for the physical domain. ADHD affects the QoL of the patient's caregiver, with similar impairment, when compared to the QoL of diabetic patients. These results emphasize the need for assessing QoL of the caregivers as part of the treatment strategies. They also emphasize the need for future studies with larger sample sizes comparing how the QOL is impacted in different chronic disorders.

Rural women caregivers in Canada.

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Crosato, Kay E; Leipert, Beverly

2006-01-01

Informal caregiving within rural contexts in Canada is increasing. This is due in part to a number of factors related to the restructuring of the Canadian health care system, the regionalization of services to urban locations, the increased population of people 65 years and older, and the desire of this population to age within their rural homes. Most often, the informal caregiving role is assumed by rural women. Women tend to fall into the role of informal caregiver to elders because of the many societal and gender expectations and values that are present within the rural culture. The purpose of this literature review is to identify the context in which women provide care for an elder in rural Canada. Illustrating these issues will help to uncover challenges and barriers rural women face when providing care and highlight recommendations and implications for rural women caregivers and nurses employed within rural settings. Many rural women share similar caregiving experiences as urban informal caregivers, but rural women are faced with additional challenges in providing quality care for an elder. Rural women caregivers are faced with such issues as limited access to adequate and appropriate healthcare services, culturally incongruent health care, geographical distance from regionalized centers and health services, transportation challenges, and social/geographical isolation. In addition to these issues, many rural women are faced with the multiple role demands that attend being a wife, mother, caregiver and employee. The pile up of these factors leaves rural women caregivers susceptible to additional stresses and burn out, with limited resources on which to depend. Through reviewing pertinent literature, appropriate implications and recommendations can be made that may assist rural women caregivers and rural nurses. Nurses working within rural communities are in ideal settings to work collaboratively in building supportive relationships with rural women in order to

Held to ransom: Parents of self-harming adults describe their lived experience of professional care and caregivers

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Britt-Marie Lindgren

2010-09-01

Full Text Available The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents’ narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in ‘limit situations’ comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being ‘broken’, being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters’ recovery.

Held to ransom: Parents of self-harming adults describe their lived experience of professional care and caregivers.

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Lindgren, Britt-Marie; Aström, Sture; Graneheim, Ulla Hällgren

2010-09-24

The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.

The Complexities of Family Caregiving at Work: A Mixed-Methods Study.

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Gaugler, Joseph E; Pestka, Deborah L; Davila, Heather; Sales, Rebecca; Owen, Greg; Baumgartner, Sarah A; Shook, Rocky; Cunningham, Jane; Kenney, Maureen

2018-01-01

The current project examined the impact of caregiving and caregiving-work conflict on employees' well-being. A sequential explanatory mixed-methods design (QUAN→qual) was utilized, and a total of 880 employees from a large health-care plan employer completed an online survey. Forty-five caregivers who completed the survey also participated in one of the five focus groups held 1 to 2 months later. Employed caregivers were significantly ( p < .05) more likely to indicate poorer physical and mental health than noncaregivers; among caregivers ( n = 370), caregiving-work conflict emerged as the most significant predictor of well-being and fully mediated the empirical relationship between burden and well-being. The focus group findings complemented the quantitative results; many of the challenges employed caregivers experience stem from their ability or inability to effectively balance their employment and caregiving roles. The results suggest the need to focus on caregiving-work conflict when constructing new or translating existing evidence-based caregiver interventions.

Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer's Patients.

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Ho, Lap; Bloom, Patricia A; Vega, Joan G; Yemul, Shrishailam; Zhao, Wei; Ward, Libby; Savage, Evan; Rooney, Robert; Patel, Divyen H; Pasinetti, Giulio Maria

2016-06-01

Caregiving for a dementia patient is associated with increased risk of psychological and physical health problems. We investigated whether a mindfulness-based stress reduction (MBSR) training course for caregivers that closely models the MBSR curriculum originally established by the Center of Mindfulness at the University of Massachusetts may improve the psychological resilience of non-professional caregivers of Alzheimer's disease patients. Twenty adult non-professional caregivers of dementia patients participated in an 8-week MBSR training course. Caregiver stress, depression, burden, grief, and gene expression profiles of blood mononuclear cells were assessed at baseline and following MBSR. MBSR training significantly improved the psychological resilience of some of the caregivers. We identified predictive biomarkers whose expression is associated with the likelihood of caregivers to benefit from MBSR, and biomarkers whose expression is associated with MBSR psychological benefits. Our biomarker studies provide insight into the mechanisms of health benefits of MBSR and a basis for developing a personalized medicine approach for applying MBSR for promoting psychological and cognitive resilience in caregivers of dementia patients.

Effects of home-based long-term care services on caregiver health according to age.

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Chen, Ming-Chun; Kao, Chi-Wen; Chiu, Yu-Lung; Lin, Tzu-Ying; Tsai, Yu-Ting; Jian, Yi-Ting Zhang; Tzeng, Ya-Mei; Lin, Fu-Gong; Hwang, Shu-Ling; Li, Shan-Ru; Kao, Senyeong

2017-10-23

Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age. This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good). The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%-100% and higher care recipient health. The

What do long-distance caregivers do? : judgment of propositions and the epistemics of long-distance family relationships

OpenAIRE

中川, 敦; Atsushi, NAKAGAWA

2015-01-01

This study clarifies what long-distance caregivers do. To this end, I conducted a conversation analysis of video data of a care conference in which a long-distance caregiver participated. When a professional caregiver proposes a care plan to a long-distance caregiver, he/she substitutes technical terms with laymen terms for easy understanding, indicating his/her orientation that a long-distance caregiver is not a professional. However, if the caregiver laughs or averts his/her eyes during the...