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Sample records for alleviate caregiver burden

  1. Treatment of Late-Life Depression Alleviates Caregiver Burden

    PubMed Central

    Martire, Lynn M.; Schulz, Richard; Reynolds, Charles F.; Karp, Jordan F.; Gildengers, Ariel G.; Whyte, Ellen M.

    2010-01-01

    Objectives To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression. Design Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone. Setting Primary care and university late-life mental health research clinic. Participants Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N = 244 dyads). Measurements Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression. Results Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β = −0.22, P =.001) and a trend toward lower general burden (β = − 0.08, P =.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76) = 4.27, P =.04). Conclusion Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects. PMID:19943833

  2. THE ASSESSMENT OF CAREGIVER BURDEN IN CAREGIVERS OF HEMODIALYSIS PATIENTS

    PubMed Central

    Mashayekhi, Fatemeh; Pilevarzadeh, Motahareh; Rafati, Foozieh

    2015-01-01

    Background: Chronic renal failure is among the chronic disease which due to persistence of the disease and long treatment process has various effects on the physiological, psychological, functional ability, lifestyle changes, and independence status of the patient and his family. This may result in the burden feeling in caregivers. According to the importance of the subject, this study is to assess the level of caregiver burden in caregivers of hemodialysis patients. Methods: This is a cross-sectional analytical descriptive study that was conducted in 2014 on the caregivers of hemodialysis patients. Research instruments were consisted of two parts: demographic data check list and caregiver burden questionnaire. Data were analyzed by SPSS statistical software and Pearson correlation coefficient tests. A p value of less than 0.05 was considered statistically significant. Results: In this study, 72.5% of caregivers reported moderate to severe levels of caregiver burden. A significant relationship was observed between gender of the patient with caregiver burden score of (p=0.031) and type of the income with caregiver burden score of (p=0.000). Caregivers of male patients and patients with inadequate income had a higher caregiver burden score. Conclusions: Our results showed that more than half of the caregivers of hemodialysis patients had moderate to severe levels of caregiver burden, therefore it is worthy that health officials and nurses pay special attention to this issue by communicating with these patients and their caregivers. PMID:26622201

  3. The changes in caregiver burden following nursing home placement.

    PubMed

    Yeh, Shu-hui; Johnson, Mary Ann; Wang, Shan-Tair

    2002-08-01

    This longitudinal study explored changes in perceived burden among Taiwanese family caregivers (n=77) from nursing home placement of an elder to four months postadmission. Higher burden at placement was related to the level of dependence of the care recipients (p=0.004), or caregiver's poor health (p<0.01). After nursing home placement for four months, global burden decreased (p<0.01) contributed primarily by lessened burden in three sub-scales: lack of family support, impact of schedule and impact of health. Burden scores on caregiver esteem and impact of finances were not decreased after placement. Duration of caregiving was the only demographic factor predicting change in global burden (p<0.001). Changes in impact on finances, and impact on health were, respectively, predicted by the perceived health (p=0.005), and religious preference (p=0.01). These results provide valuable information to healthcare providers for an understanding of the changes of caregiving burden after nursing home placement and the correlates of these changes, which may help devise an appropriate policy for alleviating the caregiver's burden. PMID:12100870

  4. Depression and caregiver burden among rural elder caregivers.

    PubMed

    Butler, Sandra S; Turner, Winston; Kaye, Lenard W; Ruffin, Leah; Downey, Roberta

    2005-01-01

    Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.

  5. Caregiver burden among nocturnal home hemodialysis patients.

    PubMed

    Rioux, Jean-Philippe; Narayanan, Ranjit; Chan, Christopher T

    2012-04-01

    Recent studies have suggested improvements in quality of life (QOL) in patients on quotidian dialysis compared with conventional hemodialysis. Few studies have focused on the burden and QOL in caregivers of patients with end-stage renal disease (ESRD) on nocturnal home hemodialysis (NHD). We aim to assess the caregivers' burden, QOL, and depressive symptoms and to compare these parameters with their patients' counterparts. Cross-sectional surveys were sent to 61 prevalent NHD patients and their caregivers. Surveys assessed demographics, general self-perceived health using the 12-Item Short Form Health Survey (SF-12) and the presence of depression using the Beck Depression Inventory. Subjective burden on caregivers was assessed by the Caregiver Burden scale and was compared with perceived burden by the patients. Thirty-six patients and 31 caregivers completed the survey. The majority of caregivers were female (66%), spouse (81%) with no comorbid illness (72%). Their mean age was 51 ± 11 years. Patients were mostly male (64%) with a median ESRD vintage of 60 months (interquartile range [IQR], 18-136 months) and a mean age of 52 ± 10 years. Compared to caregivers, patients had lower perceived physical health score but had similar mental health score. Depression criteria were present in 47% of patients and 25% of caregivers. Total global burden perceived by either caregivers or patients is relatively low. Although there is a relatively low global burden perceived by caregivers and patients undergoing NHD, a significant proportion of both groups fulfilled criteria for depression. Further innovative approaches are needed to support caregivers and patients performing NHD to reduce the intrusion of caring for a chronic illness and the risk of developing depression. PMID:22304491

  6. Caregiver Burden in Fragile X Families.

    PubMed

    Iosif, Ana-Maria; Sciolla, Andres F; Brahmbhatt, Khyati; Seritan, Andreea L

    2013-02-01

    Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.

  7. Understanding Social Support Burden Among Family Caregivers

    PubMed Central

    Washington, Karla; Demiris, George; Parker Oliver, Debra; Shaunfield, Sara

    2014-01-01

    Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered. PMID:24345081

  8. Correlates of Caregiver Burden among Family Members of Patients with Schizophrenia in Lagos, Nigeria

    PubMed Central

    Adeosun, Increase Ibukun

    2013-01-01

    Family members of patients with schizophrenia have enormous roles in the care of their patients, which could negatively impact their well being. Development of interventions targeted at alleviating the burden of informal care giving is hinged on the recognition of the factors associated with the various dimensions of burden. This study determined the correlates of caregiver burden among family members of patients with schizophrenia in Lagos, Nigeria. The study instruments included the Zarit burden interview (ZBI) and the positive and negative syndrome scale for schizophrenia (PANSS). Exploratory factor analysis of the ZBI produced a five-factor structure with “financial/physical strain”, “time/dependence strain”, “emotional strain”, “uncertainty”, and “self-criticism” domains. On multiple regression analyses, total PANSS scores, poor social support, and lower educational levels of caregivers were predictive of higher burden scores on the “financial/physical strain”, “time/dependence”, and “emotional strain” domains. Longer duration of illness, shorter patient-caregiver contact time, and being a female caregiver were predictive of higher burden scores on the “uncertainty”, “self-criticism”, and “emotional strain” domains, respectively. There is need for interventions to alleviate the burden on caregivers of patients with schizophrenia in Nigeria. These strategies must include comprehensive social support and improve access to services for patients and their caregivers. PMID:24222848

  9. Correlates of Caregiver Burden among Family Members of Patients with Schizophrenia in Lagos, Nigeria.

    PubMed

    Adeosun, Increase Ibukun

    2013-01-01

    Family members of patients with schizophrenia have enormous roles in the care of their patients, which could negatively impact their well being. Development of interventions targeted at alleviating the burden of informal care giving is hinged on the recognition of the factors associated with the various dimensions of burden. This study determined the correlates of caregiver burden among family members of patients with schizophrenia in Lagos, Nigeria. The study instruments included the Zarit burden interview (ZBI) and the positive and negative syndrome scale for schizophrenia (PANSS). Exploratory factor analysis of the ZBI produced a five-factor structure with "financial/physical strain", "time/dependence strain", "emotional strain", "uncertainty", and "self-criticism" domains. On multiple regression analyses, total PANSS scores, poor social support, and lower educational levels of caregivers were predictive of higher burden scores on the "financial/physical strain", "time/dependence", and "emotional strain" domains. Longer duration of illness, shorter patient-caregiver contact time, and being a female caregiver were predictive of higher burden scores on the "uncertainty", "self-criticism", and "emotional strain" domains, respectively. There is need for interventions to alleviate the burden on caregivers of patients with schizophrenia in Nigeria. These strategies must include comprehensive social support and improve access to services for patients and their caregivers.

  10. Caregiver Burden: Looking Beyond the Unidimensional Total Score.

    PubMed

    Lau, Sabrina; Chong, Mei Sian; Ali, Noorhazlina; Chan, Mark; Chua, Kia Chong; Lim, Wee Shiong

    2015-01-01

    The Zarit Burden Interview allows caregiver burden to be interpreted from a total score. However, recent studies propose a multidimensional Zarit Burden Interview model. This study aims to determine the agreement between unidimensional (UD) and multidimensional (MD) classification of burden, and differences in predictors among identified groups. We studied 165 dyads of dementia patients and primary caregivers. Caregivers were dichotomized into low-burden and high-burden groups based upon: (1) UD score using quartile cutoffs; and (2) MD model via exploratory cluster analysis. We compared UD versus MD 2×2 classification of burden using κ statistics. Caregivers not showing agreement by either definition were classified as "intermediate" burden. We performed binary logistic regression to ascertain differences in predictive factors. The 2 models showed moderate agreement (κ=0.72, P<0.01), yielding 104 low, 20 intermediate (UD "low burden"/MD "high burden"), and 41 high-burden caregivers. Neuropsychiatric symptoms [odds ratio (OR)=1.27, P=0.003], coresidence (OR=6.32, P=0.040), and decreased caregiving hours (OR=0.99, P=0.018) were associated with intermediate burden, whereas neuropsychiatric symptoms (OR=1.21, P=0.001) and adult children caregivers (OR=2.80, P=0.055) were associated with high burden. Our results highlight the differences between UD and MD classification of caregiver burden. Future studies should explore the significance of the noncongruent intermediate group and its predictors.

  11. Age, gender, kinship and caregiver burden in amyotrophic lateral sclerosis.

    PubMed

    Tramonti, Francesco; Bongioanni, Paolo; Leotta, Rebecca; Puppi, Irene; Rossi, Bruno

    2015-01-01

    Amyotrophic lateral sclerosis is a neurodegenerative disease that affects the motor neurons and causes progressive physical impairment. Also, other functions, such as breathing, swallowing and speech are compromised, and the loss of independence makes caregiver burden extremely high. The present study aimed at evaluating the differences in the caregiver burden due to age, gender and kinship. Women reported a higher physical and social burden than men, and partners scored higher in several dimensions of the caregiver burden when compared to sons and daughters. With respect to adult child caregivers, daughters reported higher levels of developmental burden than sons. Age has a significant impact on the caregiver burden, especially for the time dedicated to assistance and physical burden; disease severity is significantly related to the physical burden as well, and also with the developmental burden. PMID:24588639

  12. Burden and quality of life of caregivers for hemodialysis patients.

    PubMed

    Belasco, Angelica G; Sesso, Ricardo

    2002-04-01

    The aim of this study is to describe the characteristics of caregivers of chronic hemodialysis patients, assess their perceived burden and health-related quality of life, and investigate factors influencing this burden. We studied 100 hemodialysis patients and their respective primary caregivers for more than 4 months, measuring quality of life by the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Subjective burden on caregivers was assessed by the Caregiver Burden scale (score range, 1 to 4; higher values indicate a greater effect). The majority of caregivers were women (84%), married (66%), with a mean age of 46 +/- 2 (SE) years, and of low socioeconomic level. Their main types of relationship with patients were wives (38%) and sons or daughters (27%). Caregiver Mental Health and Vitality were the most affected emotional dimensions on the SF-36 (mean scores, 64.4 +/- 1.8 and 66.6 +/- 1.7, respectively). Mean score of total burden experienced was 2.07 +/- 0.05. Multiple regression analysis showed that independent and significant predictors of burden were Mental Health of the caregiver (R2 = 24%), Vitality of the patient (R2 = 10%), type of relationship of the caregiver (female spouse) (R2 = 5%), and Pain of the caregiver (R2 = 3%). Caregivers of hemodialysis patients may experience a significant burden and an adverse effect on their quality of life. Emotional aspects of caregivers (particularly female spouses) and patients are important predictors of burden. Social support and psychological interventions should be considered to improve caregiver life and patient outcomes. PMID:11920347

  13. Impact of mental health and caregiver burden on family caregivers' physical health.

    PubMed

    Chang, Hsing-Yi; Chiou, Chii-Jun; Chen, Nain-Sen

    2010-01-01

    Caregivers providing care to chronically ill family members at home are potentially at risk for caregiver burden and declining physical and psychological health. This study aims to understand how family caregivers' mental health and caregiver burden affects physical health simultaneously, controlling for factors such as age, education level, caring hours per day, and emotional, functional, and physical support systems used by caregivers. We recruited 388 caregivers from Kaohsiung and Pingtong region in Taiwan. Caregivers had to be 18 years or older and spend most of their time taking care of an ill family member at home. Mental health was assessed by the 12-item Chinese Health Questionnaire (CHQ-12) and burden was measured using a modified scale for caregiver's burden. Health status was assessed by self-perceived health (SPH), illness symptoms and the number of diagnosed chronic diseases. A high number of hours per day of caregiving was associated with low emotional support and SPH, poor mental health and high burden. Higher emotional support was associated with better mental health and fewer illness symptoms. Higher physical support was associated with poorer mental health, higher burden, a greater number of illness symptoms and chronic diseases, and a lower SPH score. Hours per day of caregiving, and use of emotional, functional, and physical support were associated with mental health, and the hours per day of caregiving and use of physical support were predictors of burden. Mental health and burden were significantly associated with caregivers' health problems simultaneously. Our results show the important influence of mental health on caregivers' physical health. Interventions for caregivers need to target health in a holistic way.

  14. Study of factors determining caregiver burden among primary caregivers of patients with intracranial tumors

    PubMed Central

    Dhandapani, Manju; Gupta, Sandhya; Dhandapani, Sivashanmugam; Kaur, Prabhjot; Samra, Kanwaljit; Sharma, Kirti; Dolma, Kunchok; Mohanty, Manju; Singla, Navneet; Gupta, Sunil K.

    2015-01-01

    Background: Caregivers of patients with intracranial tumors handle physical, cognitive, and behavioral impairments of patients. The purpose of this study was to assess the magnitude of burden experienced by primary caregivers of patients operated for intracranial tumors and evaluate factors influencing it. Methods: Descriptive cross-sectional design was used to assess home-care burden experienced by primary caregivers of patients operated for intracranial tumors. Using purposive sampling, 70 patient-caregiver pairs were enrolled. Modified caregiver strain index (MCSI) was used to assess the caregiver burden. Mini mental status examination (MMSE), Katz index of independence in activities of daily living (ADL), and neuropsychiatric inventory questionnaire (NPI-Q) were used to assess the status of patients. Results: Of 70 caregivers, 45 had mild, and 22 had moderate MCSI burden. A number of behavioral changes in NPI-Q had a significant correlation with MCSI burden (P < 0.001), whereas MMSE and Katz-ADL of patients did not show significant relation with caregiver burden. In NPI-Q, irritability, agitation, anxiety, depression, and sleep disturbances had a significant impact on MCSI. Among caregiver factors, unemployment, low per capita income, time spent, inability to meet household needs, quitting the job, and health problems had a significant impact on MCSI. In separate multivariate analyses, irritability component (P = 0.004) among behavioral changes of patients and caregivers’ inability to meet household needs (P < 0.001) had a significant association with caregiver burden independent of other factors. Conclusions: Behavioral changes in patients (especially irritability) and financial constraints had a significant independent impact on the burden experienced by primary caregivers of patients operated for intracranial tumors. Identifying and managing, these are essential for reducing caregiver burden. PMID:26543669

  15. Statistical Modeling of Caregiver Burden and Distress among Informal Caregivers of Individuals with Amyotrophic Lateral Sclerosis, Alzheimer's Disease, and Cancer

    ERIC Educational Resources Information Center

    Cumming, John McClure

    2011-01-01

    Caregiver burden and distress have been associated with informal caregivers. Research findings on the specific aspects of the caregiving role that influence burden are mixed. Factors such as amount of time per day giving care and specific characteristics about the disease progression have been linked to caregiver burden and distress. Other…

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

    ERIC Educational Resources Information Center

    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,…

  17. The impact of elder health, caregiver involvement, and global stress on two dimensions of caregiver burden.

    PubMed

    Miller, B; McFall, S; Montgomery, A

    1991-01-01

    This study examined the simultaneous effects of an elder's health, caregiver involvement, and stress on caregiver burden, addressing the questions: (a) What are the direct and indirect effects of level of elder's impairment, caregiver involvement, and stress on personal and interpersonal burden? (b) How do these relationships differ between spouse and adult-child caregivers? Data were from the 1982 National Long Term Care Survey. Results using linear structural relations analysis showed the effect of a frail elder's health and functioning on personal and interpersonal burden is mediated by task involvement and perceived global stress. Contrary to expectation, there were few differences in the direct effect of each dimension of health, functional limitations, cognitive status, and global health rating on each dimension of burden. Although the results suggested mean differences between spouse and adult child caregivers on key variables, there were no differences by family relationship in the system of relationships that comprise the process linking health and burden.

  18. “Sometimes It's Difficult to Have a Normal Life”: Results from a Qualitative Study Exploring Caregiver Burden in Schizophrenia

    PubMed Central

    Rofail, Diana; Abetz-Webb, Linda; Zarit, Steven H.; Berardo, Carmen Galani

    2014-01-01

    Objectives. As a disease typified by early onset and chronic disease course, caring for a person with schizophrenia may have a significant impact on caregivers' lives. This study aimed to investigate the subjective experiences of caregivers of people with schizophrenia as a means of understanding “caregiver burden” in this population. Methods. Face-to-face qualitative interviews were conducted with a diverse sample of 19 US-English speaking caregivers of people with schizophrenia (who were at least moderately ill). Interview transcripts were analyzed using grounded theory methods and findings used to inform the development of a preliminary conceptual model outlining caregivers' experiences. Results. Findings support assertions that people with schizophrenia were largely dependent upon caregivers for the provision of care and caregivers subsequently reported lacking time for themselves and their other responsibilities (e.g., family and work). Caregiver burden frequently manifested as detriments in physical (e.g., fatigue, sickness) and emotional well-being (e.g., depression and anxiety). Conclusions. Caring for a person with schizophrenia has a significant impact on the lives of informal (unpaid) caregivers and alleviating caregiver burden is critical for managing individual and societal costs. Future research should concentrate on establishing reliable and valid means of assessing burden among caregivers of persons with schizophrenia to inform the development and evaluation of interventions for reducing this burden. PMID:24864209

  19. [Burden on caregivers of elderly victims of cerebrovascular accident].

    PubMed

    Pereira, Roberta Amorim; dos Santos, Emanuella Barros; Fhon, Jack Roberto Silva; Marques, Sueli; Rodrigues, Rosalina Aparecida Partezani

    2013-02-01

    The aim was to assess the burden on caregivers of elderly victims of cerebrovascular accident (CVA) and to correlate it with care hours, the elderly people's age and functional independence. This cross-sectional study counted the participation of 62 elderly individuals with CVA and their caregivers. The instrument used contained socio-demographic and economic variables, the Mini-Mental Status Examination, the Functional Independence Measure (FIM) and the Zarit Scale. The possible correlations between the Zarit scale scores and the other variables were assessed using Pearson's Correlation Coefficient. Most caregivers were adults, children of the victims, married, and female. The mean Zarit score was 34.92(15.8). The FIM showed a negative correlation with caregiver burden, but no correlation with age and number of care hours. The burden on most of the caregivers ranged from moderate to severe and seems to be related to the level of functional independency of the elderly.

  20. Family Stigma and Caregiver Burden in Alzheimer's Disease

    ERIC Educational Resources Information Center

    Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

    2012-01-01

    Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…

  1. Burden among male Alzheimer's caregivers: effects of distinct coping strategies.

    PubMed

    Geiger, Jennifer R; Wilks, Scott E; Lovelace, Lauren L; Chen, Zibei; Spivey, Christina A

    2015-05-01

    Focusing on the understudied, increasing population of male Alzheimer's disease (AD) caregivers, the purpose of this study was to identify their likelihood of utilizing 3 coping strategies (task focused, emotion focused, and avoidance focused) and to examine the effects of each coping strategy on caregiving burden. Data were collected from 138 male AD caregivers in southern United States, including geographically proportional representation of African Americans in the sample. Stepwise regression revealed effects of each coping strategy on caregiving burden, controlling for demographics. The sample reported high burden. Task focused was the highest reported coping strategy. Yet, regression models indicated no significant effect of task-focused coping on burden outcomes. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden. Implications suggest that emotion- and avoidance-focused coping among male AD caregivers may be maladaptive, that is, reinforcing burden. Male AD caregivers may benefit from more task-focused coping, such as planning and active problem solving. PMID:25267930

  2. Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings.

    PubMed

    Hirakawa, Yoshihisa; Kuzuya, Masafumi; Enoki, Hiromi; Hasegawa, Jun; Iguch, Akihisa

    2008-01-01

    Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers' and dependents' characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan. PMID:17767968

  3. Caregiver burden, dementia, and elder abuse in South Korea.

    PubMed

    Lee, Minhong; Kolomer, Stacey R

    2005-01-01

    The purpose of this study is to identify characteristics that would increase the likelihood that a Korean older adult with dementia being cared for by a family caregiver is at risk of being abused. This analysis was based on a sample of 481 primary family caregivers from the data of Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Multiple regression analysis was used to examine predictors among the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment, functional ability, caregiver burden, and social support for the degree of elder abuse. The degree of elder abuse was significantly associated with caregiver burden, mental impairment, dependency of daily living of care recipient, and use of formal services. PMID:16611617

  4. [The current perspectives regarding the burden on mental health caregivers].

    PubMed

    Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio

    2012-04-01

    A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers.

  5. A Dimensional Analysis of Caregiver Burden among Spouses and Adult Children

    ERIC Educational Resources Information Center

    Savundranayagam, Marie Y.; Montgomery, Rhonda J. V.; Kosloski, Karl

    2011-01-01

    Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses…

  6. The burden of schizophrenia on caregivers: a review.

    PubMed

    Awad, A George; Voruganti, Lakshmi N P

    2008-01-01

    Schizophrenia is a disabling, chronic psychiatric disorder that poses numerous challenges in its management and consequences. It extols a significant cost to the patient in terms of personal suffering, on the caregiver as a result of the shift of burden of care from hospital to families, and on society at large in terms of significant direct and indirect costs that include frequent hospitalizations and the need for long-term psychosocial and economic support, as well as life-time lost productivity. 'Burden of care' is a complex construct that challenges simple definition, and is frequently criticized for being broad and generally negative. Frequently, burden of care is more defined by its impacts and consequences on caregivers. In addition to the emotional, psychological, physical and economic impact, the concept of 'burden of care' involves subtle but distressing notions such as shame, embarrassment, feelings of guilt and self-blame. The early conceptualization of 'burden of care' into two distinct components (objective and subjective) has guided research efforts until the present time. Objective burden of care is meant to indicate its effects on the household such as taking care of daily tasks, whereas subjective burden indicates the extent to which the caregivers perceive the burden of care. Research contributions in later years (1980s to the present) have added more depth to understanding of the construct of burden of care by exploring important determinants and factors that likely contribute or mediate the caregiver's perception of burden of care. Several studies examined the role of gender, and reported that relatives of male patients with schizophrenia frequently experience more social dysfunction and disabilities than those of female patients. Similarly, a number of other studies documented the contribution of ethnicity and cultural issues to subjective burden of care. Although there is no complete agreement on whether a specific cluster of psychotic

  7. Chinese Caregiving Burden and the Future Burden of Elder Care in Life-Course Perspective

    ERIC Educational Resources Information Center

    Zhan, Heying Jenny

    2002-01-01

    This article uses the life course perspective to combine micro- and macro-levels of analysis of caregiving burdens experienced by Chinese baby-boom cohort and then explores their elder care prospects. Based on survey interviews during 1997 and 1998 with 110 caregivers providing care to dependent parents or parents-in-law, this study finds that…

  8. Burden on Family Caregivers Caring for Patients with Schizophrenia

    PubMed Central

    Shamsaei, Farshid; Cheraghi, Fatemeh; Bashirian, Saied

    2015-01-01

    Objective: The aim of this study ‎was to determine the prevalence ‎of the burden reported by family ‎caregivers of Patients with ‎schizophrenia.‎ Methods: This cross sectional ‎study involved face-to-face ‎interviews with family caregivers ‎of patients with schizophrenia. ‎Using convenience sampling, ‎‎225 caregivers were selected ‎from Farshchian psychiatry ‎Hospital in Hamadan, Iran from ‎July to September 2012. ‎Measures included patients and ‎caregivers’ demographic ‎variables and caregivers’ burden ‎using the Zarit Burden Interview ‎‎(ZBI). Data were analyzed by ‎SPSS-18 with Pearson ‎correlation and t-test.‎ Results: Using the ZBI, we found ‎that 7.6% of the caregivers ‎experienced “no to low” burden, ‎‎23.5% “mild to moderate”, 41.8% ‎‎“moderate to severe” and 27.1% ‎‎“severe” burden. The mean ‎average score of the responses ‎to ZBI was 51.73 (SD: ± 18.23). ‎The level of burden experienced ‎was significantly associated with ‎age, gender, and educational ‎level, relation to care recipient, ‎caregiving duration and duration ‎of schizophrenia illness.‎ Conclusion: ‎ ‏ ‏Mental health ‎professionals need to develop ‎more innovative programs for ‎families of schizophrenic ‎patients. Furthermore, as a ‎replacement for supporting the ‎families and easing their ‎burdens, it may be more ‎effective to include them in the ‎health care team by assigning ‎specific tasks and providing the ‎required resources to them to ‎perform such tasks. ‎ PMID:27006669

  9. Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia

    PubMed Central

    Srivastava, Garima; Tripathi, Rakesh Kumar; Tiwari, Sarvada Chandra; Singh, Bhupinder; Tripathi, Shailendra Mohan

    2016-01-01

    Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL). Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate's correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of expectation (P < 0.05). Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL. PMID:27114625

  10. Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics.

    PubMed

    Möller-Leimkühler, Anne Maria; Wiesheu, Andreas

    2012-03-01

    The aim of the present study is to identify the relative contribution of patient and caregiver characteristics in a sample of primary carers of patients with chronic mental disorders living in the community. As carers were recruited from caregiver organizations, mainly mothers of an adult child suffering from schizophrenia participated in the study (n = 102). Within a comprehensive transactional stress model, burden was assessed with respect to objective and subjective burden, cognitive-emotional well-being, psychological distress and subjective quality of life. Primary stressors include illness-related characteristics of the patient, and a number of personal dispositions and resources of the caregivers were included as potential moderating variables. Multiple regression analyses were separately calculated for each dimension of burden. Interaction of carers' expressed emotion and external locus of control with the patient's problem with family communication as well as perceived social support was most predictive for objective and subjective burden, whereas carers' neuroticism appeared as the most relevant predictor of their well-being, psychological distress and subjective quality of life. Among the patients' variables, regular employment contributed significantly to reduce carers' distress and enhance their well-being. As the sample was recruited from caregiver organizations, a selection bias has to be taken into account. To reduce caregiver burden, especially mothers' burden, the patients' occupational abilities should be strongly enhanced at an early stage. Family interventions should improve dysfunctional interactions, enhance the carers' social activities and focus more intensely on the carers' own dispositions. PMID:21538092

  11. Neuropsychiatric Symptoms and Executive Functioning in Patients with Mild Cognitive Impairment: Relationship to Caregiver Burden

    PubMed Central

    Ryan, Kelly A.; Weldon, Anne; Persad, Carol; Heidebrink, Judith L.; Barbas, Nancy; Giordani, Bruno

    2013-01-01

    Background Caregivers of patients with mild cognitive impairment (MCI) need similar levels of support services as Alzheimer’s disease (AD) caregivers, but it is unclear if this translates to increased caregiver burden. Methods 135 participants and their caregivers (40 MCI, 55 AD and 40 normal controls, NC) completed questionnaires, and the patients were administered neuropsychological tests. Results The MCI caregivers reported significantly more overall caregiving burden than the NC, but less than the AD. They showed similar levels of emotional, physical and social burden as the AD caregivers. Among the MCI caregivers, the neuropsychiatric symptoms and executive functioning of the patients were related to a greater burden, and the caregivers with a greater burden reported lower life satisfaction and social support, and a greater need for support services. Conclusion These results indicate that MCI caregivers are at increased risk for caregiver stress, and they require enhanced assistance and/or education in caring for their loved ones. PMID:23128102

  12. Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer’s Disease

    PubMed Central

    Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

    2015-01-01

    Objectives To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer’s disease (AD). Methods We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients’ Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers’ level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. Results A lower level of cognitive function in patients (r = −0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = −0.23, p<0.001), family function (r = −0.17, p = 0.015) and caregiving experience (r = −0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0

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

    PubMed Central

    Kahn, Phoebe V.; Wishart, Heather A.; Randolph, Jennifer S.; Santulli, Robert B.

    2016-01-01

    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. PMID:26941795

  14. Caregiver burden among Iranian heart failure family caregivers: A descriptive, exploratory, qualitative study

    PubMed Central

    Bahrami, Masoud; Etemadifar, Shahram; Shahriari, Mohsen; Farsani, Alireza Khosravi

    2014-01-01

    Background: Living with patients of chronic diseases such as heart failure (HF) is a difficult situation for the caregivers. This study explored the Iranian family caregivers’ burden of caregiving for patients with HF. Materials and Methods: Eighteen family caregivers of the HF patients from two governmental medical training centers in Isfahan, Iran were recruited using purposive sampling. Data were collected through face-to-face semi-structured interviews. Each interview was transcribed verbatim and was thematically analyzed concurrently. Results: Four major themes emerged from the analysis of the transcripts: Lack of care-related knowledge, physical exhaustion, psychosocial exhaustion, and lack of support. Family caregivers believed that they have little knowledge about the patients’ disease, drugs, and how to perform caregiving roles. They experienced negative physical and psychosocial consequences of full-time and highly extended caregiving roles, such as musculoskeletal disorder, fatigue, and sleep disturbance, and a high level of anxiety, stress, and social isolation. Caregivers believed that they receive little familial and organizational support on the emotional and financial dimensions of caregiving. Conclusions: The findings of this study can be used by healthcare providers, especially nurses, to provide more effective social, informational, and professional support for family caregivers. PMID:24554961

  15. The Latina Caregiver Burden Scale: Assessing the Factor Structure for Rapid Clinical Assessment

    ERIC Educational Resources Information Center

    Land, Helen; Guada, Joseph

    2011-01-01

    The study of caregiver burden is important for those faced with chronic illnesses such as AIDS as caregivers are the first line of care provision, sustaining care recipients in the home. Because perception of burden may vary across caregiver cultural groups, accurate measurement of burden is crucial to offer culturally sensitive services for those…

  16. Spousal caregivers' burden: impact of care recipient health problems and mental status.

    PubMed

    Browning, J S; Schwirian, P M

    1994-03-01

    1. Caregiver burden is a three-dimensional concept. It reflects the impact of caregiving on interpersonal relationships; expressions of caregiver anxiety; and the personal impact of the caregiver role. 2. In the study presented, mental impairment had the most significant negative impact on caregiver burden overall, as well as on each of the three components of burden--regardless of an impaired elder's physical problems. 3. Nursing strategies to improve the care of frail elders and their caregivers include the development and implementation of a sensitive discharge assessment and plan; articulation between the hospital-based and community-based nurses; and assessment of the caregiver-care receiver dyad.

  17. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada.

    PubMed

    Guerriere, Denise; Husain, Amna; Zagorski, Brandon; Marshall, Denise; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; Burns, Sheri; Brooks, Heather; Coyte, Peter C

    2016-07-01

    Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have

  18. The Mood Disorder Burden Index: a scale for assessing the burden of caregivers to adults with unipolar or bipolar disorder.

    PubMed

    Martire, Lynn M; Hinrichsen, Gregory A; Morse, Jennifer Q; Reynolds, Charles F; Gildengers, Ariel G; Mulsant, Benoit H; Schulz, Richard; Frank, Ellen; Kupfer, David J

    2009-06-30

    We present a brief measure of caregiver burden, the Mood Disorder Burden Index (MDBI), for use with family members and close friends of adults with major depressive disorder (MDD) or bipolar disorder (BD). The MDBI assesses burden in three core domains (patients' mood symptoms, caregivers' worry about the future, and caregivers' interpersonal difficulties with the patient) and includes an optional module that assesses caregiver burden associated with patients' pharmacotherapy or psychotherapy. The MDBI was administered to caregivers of older individuals (i.e., 58 years and older) with MDD (n=123) or BD (n=38) who were receiving treatment through a research study. Analyses indicated evidence of convergent and discriminant validity of the new measure well as internal consistency within both caregiver groups. It will be important for future research to administer the MDBI to caregivers of middle-aged and older patients as well as those receiving treatment through inpatient settings or community outpatient clinics.

  19. Health Care Utilization Among Homebound Elders: Does Caregiver Burden Play a Role?

    PubMed Central

    Reckrey, Jennifer M.; DeCherrie, Linda V.; Kelley, Amy S.; Ornstein, Katherine

    2014-01-01

    Objectives To describe informal caregiver and patient characteristics associated with high caregiver burden in homebound elders and to examine associations between high caregiver burden and patient health care utilization at the practice level. Method We used a cross-sectional and prospective cohort design to study 214 caregiver-patient dyads in a home-based primary care program. Results Informal caregivers with the highest burden were more likely to help with more activities of daily living and instrumental activities of daily living and spend >40 hr/week in caregiving. Patients whose caregivers experienced the highest burden were more likely to be non-White males without 24-hr paid homecare. There were no significant independent associations between high burden and high calls, high visits, or social work involvement. Discussion In this medically complex and highly dependent population, further study of how families and other caregivers impact health care utilization is needed. PMID:23922332

  20. Patient's Loss of Empathy Is Associated With Caregiver Burden.

    PubMed

    Pomponi, Massimiliano; Ricciardi, Lucia; La Torre, Giuseppe; Fusco, Domenico; Morabito, Bruno; Ricciardi, Diego; Di Gioia, Annamaria; Bernabei, Roberto; Bentivoglio, Anna Rita

    2016-09-01

    Patients benefit from the presence of empathic caregivers (CGs). In this regard, empathy toward the patient is one of the clinical targets for improving patient outcomes. However, relatively little is known about the impact of patients' empathic responses on the CGs' burden. Among people living with Parkinson's disease (PwP), care partners play a major role. This study involved 28 spouse-patient couples. Empathy, stress burden, and mood disorders (such as anxiety and depression) were assessed over a 6-month period, before and after the reported intervention. Our observation points out that the improvement of patient empathy is necessary for a significant burden reduction among spouses caring for PwP. PMID:27570901

  1. Caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS.

    PubMed

    Baker, S; Sudit, M; Litwak, E

    1998-01-01

    The incidence of HIV/AIDS among minority women has been reported in record numbers in inner cities. In considering the shift toward community-based care, these minority women living with HIV/AIDS (MWLWHA) are receiving care from informal caregivers in their communities. As caregivers strive to meet the needs of these women, understanding the impact on these caregivers of providing support is critical. In this qualitative study, caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS were studied. Thirty-one caregivers were interviewed. Data analyses included the constant comparative method consistent with the grounded theory approach. Two caregiver groups emerged, male companion and relative/girlfriend caregivers. All caregivers reported the emotional burden of not revealing the HIV/AIDS diagnoses. Relative/girlfriend caregivers had similar burdens related to the children of the women; their social networks, health and finances. Maintaining a physical exercise regimen and a spiritual focus were coping strategies use by all caregivers. Implications and recommendations are discussed.

  2. Caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS.

    PubMed

    Baker, S; Sudit, M; Litwak, E

    1998-01-01

    The incidence of HIV/AIDS among minority women has been reported in record numbers in inner cities. In considering the shift toward community-based care, these minority women living with HIV/AIDS (MWLWHA) are receiving care from informal caregivers in their communities. As caregivers strive to meet the needs of these women, understanding the impact on these caregivers of providing support is critical. In this qualitative study, caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS were studied. Thirty-one caregivers were interviewed. Data analyses included the constant comparative method consistent with the grounded theory approach. Two caregiver groups emerged, male companion and relative/girlfriend caregivers. All caregivers reported the emotional burden of not revealing the HIV/AIDS diagnoses. Relative/girlfriend caregivers had similar burdens related to the children of the women; their social networks, health and finances. Maintaining a physical exercise regimen and a spiritual focus were coping strategies use by all caregivers. Implications and recommendations are discussed. PMID:9677867

  3. Quality of life of caregivers with relatives suffering from mental illness in Hong Kong: roles of caregiver characteristics, caregiving burdens, and satisfaction with psychiatric services

    PubMed Central

    2012-01-01

    Background The study attempted to explore the quality of life (QoL) of Chinese caregivers with mentally ill relatives. It also aimed to examine the differential roles of caregiving burdens, caregiver characteristics, and satisfaction with psychiatric services in caregivers' QoL. Methods 276 caregivers with relatives attending community psychiatric facilities in Hong Kong were invited to fill out a questionnaire. One sample t-tests were conducted to compare the results of this study with that of other Chinese populations in Hong Kong, Taiwan, and mainland China. A hierarchical regression analysis was performed to examine the relative influence of different factors on caregivers' QoL. Results Our sample of caregivers had significantly lower QoL scores than other Chinese populations. Results also suggest that Chinese caregivers who had chronic illness, younger in age, a lower education level, experienced more difficulties in handling negative symptoms, and were more dissatisfied with mental health services had poorer quality of life. Indeed, caregiver characteristics displayed a much stronger association with caregivers' QoL than did caregiving burdens and satisfaction with psychiatric services. Conclusions This study supports the strong association of caregiver characteristics and the QoL of caregivers and establishes the nature of the relationship between satisfaction with mental health services and caregiver QoL. Implications for future research and practice are discussed. PMID:22289443

  4. Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Calabar, Nigeria

    PubMed Central

    Akpan-Idiok, Paulina Ackley; Anarado, Agnes Nonye

    2014-01-01

    Introduction Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar. Methods The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data collected were analysed using descriptive and chi-square statistics with the help of SPSS 18.0 and PAS 19.0 softwares. Results The results indicated that the caregivers were in their youthful and active economic age, dominated by females, Christians, spouses, partners and parents. The burden levels experienced by the caregivers were as follows: severe (46.2%), moderate (36.2%) and trivial of no burden (17.6%). The forms of burden experienced were physical (43.4%), psychological (43.3%), financial (41.1%) and social (46.7%), quite frequently and nearly always. Psychological and social forms of burden had the highest weighted score of 228 in terms of magnitude of burden. The result further showed that there was a significant (P = 0.001) and inverse association between caregivers’ burden and the care receivers’ functional ability. The level of burden also increased significantly (P = 0.000) with the duration of care, while there was also a significant (P = 0.01) relationship between caregivers’ experience of burden and their desire to continue caregiving. Conclusion Caregiving role can be enhanced by provision of interventions such as formal education programme on cancer caregiving, oncology, home services along side with transmural care. PMID:25419297

  5. Eldercare and Work-Role Conflict: Toward an Understanding of Gender Differences in Caregiver Burden.

    ERIC Educational Resources Information Center

    Kramer, Betty J.; Kipnis, Stuart

    1995-01-01

    Investigates gender differences in caregiving tasks, role strains, and resources to account for greater female strain among a probability sample of employed, nonspousal caregivers. After controlling for known sociodemographic dissimilarities in predicting burden, the effect of gender decreased at each step when caregiver tasks, work role strains,…

  6. Take up the caregiver's burden: stories of care for urban African American elders with dementia.

    PubMed

    Fox, K; Hinton, W L; Levkoff, S

    1999-12-01

    This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course.

  7. Take up the caregiver's burden: stories of care for urban African American elders with dementia.

    PubMed

    Fox, K; Hinton, W L; Levkoff, S

    1999-12-01

    This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course. PMID:10647946

  8. A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale Intellectual Disability

    ERIC Educational Resources Information Center

    McCallion, P.; McCarron, M.; Force, L. T.

    2005-01-01

    It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…

  9. Informal caregiving to persons with AIDS in the United States: caregiver burden among central cities residents eighteen to forty-nine years old.

    PubMed

    Turner, H A; Catania, J A

    1997-02-01

    Characteristics and caregiving experiences of friends and family members caring for people with AIDS (PWAs) were examined. Based on a probability sample of informal AIDS caregivers ages 18-49 living in central cities of the United States (n = 260), analyses were conducted to (a) identify the sociodemographic characteristics of young central city caregivers; and (b) examine the effects of caregiver characteristics (relationship to PWA, gender, race/ethnicity, income, sexual orientation, HIV status, perceived susceptibility), and level of objective caregiving demands, on subjective caregiver burden. Results indicate that the largest group of caregivers in this age category are male friends of the PWA--a group not typically found among caregivers to persons with other types of illnesses. In general, gay or bisexual caregivers, caregivers who have traditional family ties to the PWA, men relative to women, and lower income caregivers, report the greatest burden. While level of caregiving demands represents the most influential predictor of caregiver burden, white and male caregivers experience greater burden, independent of level of involvement and other caregiver characteristics. Receiving instrumental support with caregiving buffers the impact of high objective demands on subjective burden.

  10. Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain

    PubMed Central

    Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos

    2014-01-01

    Objectives: To evaluate the profile of family caregivers of Alzheimer’s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters) with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24%) of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%), were treated with psychotropic drugs (68%), and interacted with the pharmacist (92%). Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer’s patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer’s disease management to caregivers to ease the burden of care. PMID:26131040

  11. Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea.

    PubMed

    Lim, Young Mi; Son, Gwi-Ryung; Song, Jun-Ah; Beattie, Elizabeth

    2008-08-01

    The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering Scale-Community Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted.

  12. Burden, interdependence, ethnicity, and mental health in caregivers of patients with schizophrenia.

    PubMed

    Suro, Giulia; Weisman de Mamani, Amy G

    2013-06-01

    Caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health. Using a sample of 176 caregivers of patients with schizophrenia, the present study examined how two components of burden (objective and subjective) interacted with interdependence and ethnicity to influence relatives' overall mental health. In line with study hypotheses, and with the stress-appraisal-coping model developed by Lazurus and Folkman (1984), we found that subjective burden mediated the relationship between objective burden and mental health. In other words, subjective appraisals of caregiving appeared to partially underlie the association between the concrete costs of caregiving and psychological outcomes in schizophrenia caregivers. Also as hypothesized, we found that interdependence, or the perceived interconnectedness of individuals within a group, moderated the relationship between objective burden and subjective burden. In other words, when levels of interdependence were high, the objective components of burden appeared to have a weaker relationship with subjective burden. When interdependence was low, on the other hand, objective burden was more likely to be associated with subjective burden. This finding suggests that helping caregivers to value harmony and connection with others over individual self-interests may reduce the likelihood that objective stressors (which are often inevitable in schizophrenia) will result in subjective distress. On the basis of prior research, we also tested several hypotheses regarding the role of ethnicity and its association with burden, interdependence, and mental health. However, contrary to expectations, no ethnic patterns were observed. PMID:23763688

  13. Behavioral Symptoms in Motor Neuron Disease and Their Negative Impact on Caregiver Burden

    PubMed Central

    Cui, Bo; Cui, Li-Ying; Liu, Ming-Sheng; Li, Xiao-Guang; Ma, Jun-Fang; Fang, Jia; Ding, Qing-Yun

    2015-01-01

    Background: The spectrum of abnormal behaviors in amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) has been described, but its practical meaning, namely its impact on caregiver burden, has not been clearly documented in Chinese population. This study aimed to assess the distribution of abnormal behaviors in Chinese population, and to analyze the relationship between behavior changes and caregiver burden. Methods: Sixty-five patients with ALS/MND have been consecutively enrolled into registry platform of Peking Union Medical College Hospital. An investigation was performed to these patients and their caregivers using the revised ALS function rating scale, Frontal Behavioral Inventory-ALS version, the Frontal Assessment Battery, and the Caregiver Burden Inventory. Results: Twenty-eight (43.1%) patients displayed abnormal behaviors of varying degrees, with one fulfilling the diagnostic criteria of frontotemporal lobe degeneration. Irritability, logopenia, and inflexibility ranked top 3 of abnormal behavior list. Correlation analysis revealed that the degree of behavioral change and frontal cognitive status were significantly associated with caregiver burden, with more extensive impact from disinhibitive behaviors. Analysis of covariance analysis showed that after associated factors were corrected, caregivers of patients with moderate to severe behavior change reported significantly heavier developmental burden, physical burden, and total burden than those with no behavioral change. Conclusions: Neurobehavioral symptoms could present in around 40% of Chinese patients with ALS/MND, and the distribution of these behaviors was also unique. Besides, abnormal behaviors were highly related to caregivers’ burden. PMID:26315075

  14. Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives.

    PubMed

    Williams, Phoebe D; Williams, Kirstin A; Williams, Arthur R

    2014-03-01

    Pediatric cancer diagnoses affect the entire family: parents, well siblings, the ill child, and others. The objective of this study was to review nursing studies on parental caregiving of children with cancer, family impact, and costs. The study used inclusion/exclusion criteria and family systems theory, self/dependent-care, and symptom management (monitoring, alleviation) concepts. Regarding "levels of evidence," 3 studies were Level II; 7 were Level IV; 7 were Level VI; 1 review was Level V and the second was Level I. Of 19 studies: 11 were qualitative; 4, quantitative; 2 were mixed methods. Content analysis themes were: Parental caregiving and family impact, economic burden. Conclusions were that (a) qualitative studies are predominant; findings supported quantitative findings; (b) quantitative nursing studies are less common: found one longitudinal, randomized controlled trial (RCT) focused on outcomes of an intervention for well siblings and parents, implemented by Clinical Nurse Specialists, CNSs; (c) few quantitative studies with large samples were found, especially ones with theoretical models of the family system and measures of illness impact on families; and (d) "mixed methods" longitudinal nursing research is illustrated. There is a need for "evidence-based" practice (EBP) nursing studies of interventions focused on parent education/support/assistance; respite care, and increasing family/well sibling knowledge/other information on the child's illness. PMID:24261317

  15. Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.

    PubMed

    Martinez-Martin, Pablo; Arroyo, Susana; Rojo-Abuin, Jose Manuel; Rodriguez-Blazquez, Carmen; Frades, Belen; de Pedro Cuesta, Jesus

    2008-09-15

    The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL.

  16. Burden Among Caregivers of Children Living with Human Immunodeficiency Virus in North India

    PubMed Central

    Chauhan, Ramesh Chand; Rai, Sanjay Kumar; Kant, Shashi; Lodha, Rakesh; Kumar, Nand; Singh, Neelima

    2016-01-01

    Background: Due to wider access to and free antiretroviral therapy (ART) program, the number of children dying due to acquired immune deficiency syndrome (AIDS)-related causes has declined and the nature and duration of human immunodeficiency virus (HIV)/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA) places a significant additional burden on the caregivers. Aims: This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India. Materials and Methods: A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS). Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied. Results: Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9%) of the caregivers. Nearly two-third of them (65.4%) reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients’ behavior, and caregivers’ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility. Conclusions: Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as caregivers did

  17. Caregiving responsibilities and burden among older people by HIV status and other determinants in Uganda.

    PubMed

    Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties

    2013-01-01

    Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self

  18. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden

    PubMed Central

    Sharma, Manoj Kumar

    2016-01-01

    Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents’ distress and enabling them to handle the dysfunction in users. PMID:27114629

  19. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

    PubMed

    Sharma, Manoj Kumar

    2016-01-01

    Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users. PMID:27114629

  20. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

    PubMed

    Sharma, Manoj Kumar

    2016-01-01

    Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.

  1. Family caregivers' burden, quality of life, and health following patients' renal transplantation.

    PubMed

    Wicks, M N; Milstead, E J; Hathaway, D K; Cetingok, M

    1998-09-01

    Improved quality of life and physical functioning among renal transplant recipients have been documented; however, little of the literature has addressed the effects of transplantation on family caregivers. The purpose of this exploratory descriptive study was to characterize the level of subjective burden, quality of life, and self-rated health of caregivers who assist family members prior to transplantation as well as at 6 months following. The study sample included 19 caregivers of 19 renal transplant recipients. In general, caregiver burden, quality of life, and self-rated health did not improve following patients' transplants. In addition, 9 of 19 family caregivers reported increased burden. Because much of healthcare is family-based and greater reliance on family support seems inevitable, further studies are needed to examine the impact of transplantation on the family as well as the impact of the family on patients' posttransplant outcomes. PMID:9866547

  2. The heterogeneity in financial and time burden of caregiving to children with chronic conditions.

    PubMed

    Zan, Hua; Scharff, Robert L

    2015-03-01

    We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 National Health Interview Survey and 2004-2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children's chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families' savings and employment decisions.

  3. A pilot study examining the awareness, attitude, and burden of informal caregivers of patients with dementia.

    PubMed

    Qadir, Farah; Gulzar, Wajiha; Haqqani, Sabahat; Khalid, Amna

    2013-01-01

    Pakistan is 1 of 5 countries with the highest projected increase in prevalence of dementia in the Asia Pacific region (Access Economic, 2006), where there is a lack of structured support network for caregivers in general and for dementia caregivers in specific. The caregivers and other related individuals predominantly rely on traditional familial support for caregiving. This approach places immense burdens on the familial caregivers (Shaji, 2009). In Pakistan, there is paucity of research evidence on care of patients with dementia and the needs of caregivers dealing with such patients. This study explores awareness among caregivers, their attitudes toward family members suffering from dementia, and their experience of burden. In-depth interviews were conducted with 12 caregivers of patients diagnosed with dementia in Rawalpindi/Islamabad Pakistan. There was a considerable lack of awareness about dementia as an illness among the caregivers. They reported a conflict between emotional and religious commitments to nurture older adult relatives and their experience of psychological, physical, and economic burden, resulting in occasional episodes of carelessness and violence toward them. The study indicated that women, particularly those who were employed outside of the home, reported higher levels of stress. It is suggested that support from extended family in all forms was perceived as a concrete form of stress relief by the primary caregiver. The findings of this study indicate that the social and financial burden of dementia on families of caregivers in Pakistan may be exacerbated if they do not have support. This indicates a need for multipronged intervention from both government and nongovernment organizations, as well as the community, to develop programs for caregivers that are nested within the cultural context of filial piety in Pakistan. These strategies should also be gender sensitive, giving priority to more at-risk groups. PMID:24579270

  4. Correlates of depression and burden for informal caregivers of patients in a geriatrics referral clinic.

    PubMed

    Drinka, T J; Smith, J C; Drinka, P J

    1987-06-01

    Caregiver burden has been associated with patient dementia. In this study we tested the hypothesis that caregiver burden and depression are related to patient cognitive impairment. We analyzed records of 127 elderly male patients from a Veterans hospital geriatrics referral clinic. The patients and their informal caregivers had been referred to the clinic because the complexity and multiplicity of their problems were beyond the treatment capability of other clinics. There was a high prevalence of dementia (73%) and depression (69%) in these patients according to Diagnostic and Statistical Manual (DSM-III) criteria. Quantitative measures of patient dementia and dependency in activities of daily living were not statistically associated with measures of caregiver depression or burden. In contrast, measures of patient depression were significantly correlated with measures of caregiver depression and burden. We hypothesize that caregivers of chronically ill, elderly men cope better with physical and cognitive incapacity than with affective symptoms. Because caregiver support is the most important factor in maintaining a disabled elder in the community, we suggest evaluating patients and caregivers for depression as part of standard practice in geriatric clinical settings. PMID:3553288

  5. Caregiver Burden after Receiving a Diagnosis of an Autism Spectrum Disorder

    ERIC Educational Resources Information Center

    Stuart, Melissa; McGrew, John H.

    2009-01-01

    The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…

  6. [Association between the functional capacity of dependent elderly people and the burden of family caregivers].

    PubMed

    Fuhrmann, Ana Cláudia; Becker Kottwitz Bierhals, Carla Cristiane; dos Santos, Naiana Oliveira; Paskulin, Lisiane Manganelli Girardi

    2015-03-01

    The aim of this study was to characterize dependent elderly people and their main family caregivers and the association between functional capacity of the elderly and the burden of caregivers. This cross-sectional study was conducted with 112 elderly people and caregivers connected to a primary care service in Porto Alegre, Brazil. The applied instruments related to care and socioeconomic variables were Physical and Instrumental Activities of Daily Living (PADL and IADL) and the Burden Interview. The Spearman correlation coefficient was also used. Average age of the elderly individuals in this study was 81.41 years, while the average score for PADL was 10.36 and 6.25 for IADL. Of the 112 elderly individuals, 71.4% had severe dependence. Among caregivers, 75% were women, 61.6% were the sons or daughters with an average age of 57.98 and an average burden of 29.53, which is equivalent to moderate burden. Results revealed a significant correlation between functional capacity of the elderly and caregiver burden. It was verified that the higher the dependence of elderly people, the greater the burden of caregivers.

  7. Factor Analysis of the 12-Item Zarit Burden Interview in Caregivers of Persons Diagnosed With Dementia.

    PubMed

    Branger, Camille; O'Connell, Megan E; Morgan, Debra Gail

    2016-05-01

    The Zarit Burden Interview (ZBI) is commonly used to measure dementia caregiver burden, but its factor structure is unclear. A two-factor structure for the 12-item ZBI, "personal strain" and "role strain," has been shown, but recent data suggest that an additional factor of "guilt" is embedded in the "role strain" items. The 12-item ZBI administered to 194 informal rural and urban caregivers of persons diagnosed with dementia was analyzed using exploratory factor analysis. A two-factor structure, with item loadings consistent with previously conceptualized constructs of "personal strain" and "role strain," was found. Moreover, this factor structure was invariant to caregiver subgroups. When the predictive value of these factors was explored, only "personal strain" was important in predicting caregiver psychological distress, measured with the Brief Symptom Inventory. However, "role strain," which included the hypothesized "guilt" items, did not appear to be an important predictor of caregiver distress. PMID:24652929

  8. Responsibility and burden from the perspective of seniors’ family caregivers: a qualitative study in Shanghai, China

    PubMed Central

    Zeng, Li; Zhu, Xiaoping; Meng, Xianmei; Mao, Yafen; Wu, Qian; Shi, Yan; Zhou, Lanshu

    2014-01-01

    Objectives: This study aimed to explore the experience of seniors’ family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. Materials and methods: An exploratory, descriptive, qualitative design was used and a semi-structure interview was conducted. A convenience sample of 11 participants in two community service centers in Shanghai was recruited. Data saturation guided the size of the sample. The Colaizzi method of empirical phenomenology was used for interviewing and analyzing data obtained from 11 caregivers. Results: Three major themes were found: It is a hard work; It is my responsibility; Social support is not enough. Conclusion: The findings of the study are practical and helpful for health care providers to develop appropriate caregiver support services, to balance the responsibility and burden of caregivers, and to consider the factors influencing the utility of support services. PMID:25126186

  9. Patients on the waiting list for liver transplantation: caregiver burden and stress.

    PubMed

    Miyazaki, Eliane Tiemi; Dos Santos, Randolfo; Miyazaki, M Cristina; Domingos, Neide M; Felicio, Hellen C; Rocha, Marcia F; Arroyo, Paulo C; Duca, William J; Silva, Renato F; Silva, Rita C M A

    2010-10-01

    Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semistructured interview, the Caregiver Burden Scale, the Inventário de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient's Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers.

  10. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting.

    PubMed Central

    Ohaeri, Jude U.; Shokunbi, Wuraola A.

    2002-01-01

    In Nigeria, with a high prevalence of sickle cell disease (SCD), families bear most of the burden of care for patients with this chronically disabling illness, because there are no national social welfare provisions. To assess the severity of indices of psychosocial burden among relatives of 24 SCD patients in crisis, in comparison with relatives of 57 SCD patients in stable condition. Cross-sectional study, using a burden instrument and Goldberg's General Health Questionnaire. Objective burden indices were significantly higher for SCD in crisis. The financial burden of SCD in crisis was significantly higher than the burden of disruption of family routines. 57.9% of all caregivers experienced little or no difficulty coping with SCD. Relatives with higher educational and occupational attainments (compared with those with lower attainments) experienced significantly lesser financial burden, disruption of family routines, and psychological distress. Compared with a similar study of cancer patients, relatives of patients in SCD crisis perceived similar financial, family routine burdens and psychological distress scores. Compared with US and UK reports, our caregivers were predominantly married and reflected the national range of socioeconomic groups. Global rating of burden was significantly predicted by disruption of family routines and higher age of caregivers. The psychosocial burden of SCD can be significantly reduced by controlling the frequency and duration of crises, as well as providing adequate information and socioeconomic support to families. Hematology staff should be sensitive to the psychosocial dimensions of SCD. PMID:12510705

  11. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting.

    PubMed

    Ohaeri, Jude U; Shokunbi, Wuraola A

    2002-12-01

    In Nigeria, with a high prevalence of sickle cell disease (SCD), families bear most of the burden of care for patients with this chronically disabling illness, because there are no national social welfare provisions. To assess the severity of indices of psychosocial burden among relatives of 24 SCD patients in crisis, in comparison with relatives of 57 SCD patients in stable condition. Cross-sectional study, using a burden instrument and Goldberg's General Health Questionnaire. Objective burden indices were significantly higher for SCD in crisis. The financial burden of SCD in crisis was significantly higher than the burden of disruption of family routines. 57.9% of all caregivers experienced little or no difficulty coping with SCD. Relatives with higher educational and occupational attainments (compared with those with lower attainments) experienced significantly lesser financial burden, disruption of family routines, and psychological distress. Compared with a similar study of cancer patients, relatives of patients in SCD crisis perceived similar financial, family routine burdens and psychological distress scores. Compared with US and UK reports, our caregivers were predominantly married and reflected the national range of socioeconomic groups. Global rating of burden was significantly predicted by disruption of family routines and higher age of caregivers. The psychosocial burden of SCD can be significantly reduced by controlling the frequency and duration of crises, as well as providing adequate information and socioeconomic support to families. Hematology staff should be sensitive to the psychosocial dimensions of SCD. PMID:12510705

  12. Influence of family dynamics on burden among family caregivers in aging Japan

    PubMed Central

    Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

    2016-01-01

    Background. Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. Objective. To examine the influence of family dynamics on burden experienced by family caregivers. Methods. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, <2; intermediate, 2 to <5; worst, ≥5. The mean differences in burden index of caregivers (BIC-11) between the three groups were estimated by linear regression model with adjustment for care receiver’s activity of daily living and cognitive function. Results. Mean age of caregivers was 63.2 years (with 40.7% aged ≥ 65 years). BIC-11 scores were higher in the worst IF-Long group (adjusted mean difference: 4.4, 95% confidence interval: 1.2 to 7.5) than in the best IF-Long group. We also detected a positive trend between IF-Long score and BIC-11 score (P-value for trend <0.01). Conclusion. Our findings indicate that family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver’s degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. PMID:27450988

  13. Burden and depression in primary caregivers of persons with visual impairment

    PubMed Central

    Khare, Shubhank; Rohatgi, Jolly; Bhatia, Manjeet Singh; Dhaliwal, Upreet

    2016-01-01

    Context: Caregivers who assist persons with visual impairment often neglect their needs, resulting in burden and depression. Rehabilitation efforts, directed to the disabled, seldom target the caregiver. Aim: To assess burden and depression in persons caring for blind individuals. Settings and Design: This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. Materials and Methods: Institutional Ethical Board approval was obtained and written informed consent too was obtained from the participants involved in this study. Persons with best-corrected vision <20/200 in the better eye, and their primary caregivers, were recruited. We recorded demography, other illness/disability, household income, relationship with disabled person, and caregiver burden (Caregiver Burden Scale) and depression (Centre for Epidemiologic Studies Depression Scale). Statistical Analysis: Statistical analysis was carried out using SPSS version 20 (Released 2011. Armonk, NY: IBM Corp.); range, average, and standard deviation were determined for age, burden, and depression. The association between burden and depression was determined using Pearson's correlation; the relationship between degree of disability and caregiver burden and depression was determined using unpaired t-test; using multiple linear regression, factors were found to be statistically significant; significance was taken at P < 0.05. Results: Twenty-seven (53.0%) men and 24 (47.0%) women had visual impairment. Most caregivers (n = 40; 81.6%) were first-degree relatives or a spouse; 32 (65%) had schooling <5 years; and 29 (59%) were unemployed. Depression ranged from 21 to 52 (average 43.2 ± 5.71); it correlated with degree of disability (P = 0.012), household income (r = −0.320; P = 0.025), and burden (r = 0.616; P < 0.001). Burden ranged from 30 to 73 (average 54.5 ± 6.73) and correlated with degree of disability (P = 0.006). On multiple linear regression

  14. Caring for a demented elderly person--burden and burnout among caregiving relatives.

    PubMed

    Almberg, B; Grafström, M; Winblad, B

    1997-01-01

    Fifty-two family caregivers for demented elderly people were investigated for burden and burnout experiences. A structured burden questionnaire and the Burnout Measure were used. Burnout is described in relation to the caregiver's gender, age, family relationship and the demented person's living place. Older wives and daughters were the most likely to report burnout in their lives. Some siblings and daughters-in-law also risked developing burnout. Regression analysis showed that limitation in social life, poor health and a lack of positive outlook on caring were the most important independent variables explaining variance in burnout among caregivers. There was no difference in burnout experiences between caregivers having their demented elderly person living at home and those having them in an institution.

  15. Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men.

    PubMed

    Stewart, Norma J; Morgan, Debra G; Karunanayake, Chandima P; Wickenhauser, Joseph P; Cammer, Allison; Minish, Duane; O'Connell, Megan E; Hayduk, Leslie A

    2016-02-01

    Forecasts of increasing prevalence of dementia in rural settings, coupled with reliance on family caregiver support, indicate that a greater understanding of caregiver distress in these contexts is necessary. The purpose of this study was to examine family caregiver burden and severity of distress on the day that a family member was diagnosed with dementia at a memory clinic that serves a rural population. Participants in this retrospective study were 231 primary family caregivers of a rural community-dwelling person with dementia. On the diagnostic day, women reported more burden and severity of distress than men and spouses reported more severity of distress than adult children. A structural equation model was not supported for the entire sample, but was supported for women caregivers only (n = 161). Caregiver distress related to dementia-specific behaviors explained both global distress and burden. Patients' functional decline was related to caregiver burden.

  16. Concepts of burden in giving care to older relatives: A study of female caregivers in a Mexico City neighborhood

    PubMed Central

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

    2010-01-01

    Objectives This study examined how women in a Mexico City suburb conceptualized the construct of burden within the context of giving care to older relatives. Methods Data were collected on forty-one women through semi-structured interviews regarding their caregiving experiences to elderly relatives. Phenomenological principles were used to analyze meanings and understandings of caregiving experiences. Results Burden was a multi-dimensional construct that referred to specific situations that made caregivers feel emotionally or physical “heavy.” Burden also referred to “being a burden” by being in the way, making things difficult, or being a ‘weight’ on caregivers' shoulders. However, women in this study also viewed burden as a positive sacrifice that involved love, initiative, and good will. Discussion This study is an important first step in defining the ways in which caregiving is positively and negatively meaningful for Mexican caregivers and their families. Our findings offer an additional dimension of caregiver burden to broaden our understanding and measurement of the construct. The development of culturally appropriate instruments to measure caregiving burden in Mexico is necessary to provide an empirical foundation for policy recommendations that address the growing need for institutional support of caregivers. Moreover, our findings suggest that researchers studying caregiving in Mexico should think about how burden is measured on existing instruments before adapting them for widespread use. PMID:18324460

  17. Predictors of Alzheimer's Disease Caregiver Depression and Burden: What Noncaregiving Adults Can Learn from Active Caregivers

    ERIC Educational Resources Information Center

    Hayslip, Bert, Jr.; Han, GiBaeg; Anderson, Cristina L.

    2008-01-01

    This study examined similarities and differences between active caregivers (adult children and spouses whose family member had Alzheimer's disease) and not-as-yet caregiving adults (adult children and spouses whose family members are older, but do not as yet suffer from Alzheimer's disease). The objective was to determine what factors predict…

  18. Factors Associated with Family Caregivers' Burden and Depression in Korea

    ERIC Educational Resources Information Center

    Yoon, Hyunsook

    2003-01-01

    This study determines the relative effects of functional impairment, cognitive impairment, and duration of care of the elderly on caregivers' depression, and identifies the factors that influence this relationship. The variables were entered individually, based on a logical order in the path modeling. For mediators, the order of three types of…

  19. Burden and Depression among Caregivers of Visually Impaired Patients in a Canadian Population

    PubMed Central

    Khan, Zainab; Braich, Puneet S.; Rahim, Karim; Rayat, Jaspreet S.; Xing, Lin; Iqbal, Munir; Mohamed, Karim; Sharma, Sanjay; Almeida, David

    2016-01-01

    Purpose/Background. This study reports the degree of burden and the proportion at risk for depression among individuals who provide care to visually impaired patients. Study Design. This is clinic-based, cross-sectional survey in a tertiary care hospital. Methods. Caregivers were considered unpaid family members for patients whose sole impairment was visual. Patients were stratified by vision in their better seeing eye into two groups: Group 1 had visual acuity between 6/18 and 6/60 and Group 2 were those who had 6/60 or worse. Burden was evaluated by the Burden Index of Caregivers and the prevalence of being at risk for depression was determined by the Center for Epidemiologic Studies Depression scale. Results. 236 caregivers of 236 patients were included. Total mean BIC scores were higher in Group 2. Female caregivers, caregivers providing greater hours of care, and caregivers of patients who have not completed vision rehabilitation programs are at higher risk for depression. PMID:27051859

  20. Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia.

    PubMed

    Anum, Jawaria; Dasti, Rabia

    2016-06-01

    The research determined the relationship of caregiving burden, spirituality and psychological well-being of parents of Pakistani thalassemic patients in a crosssectional research design. The sociodemographic form, Montgomery-Borgatta burden measure (Montgomery et al. in Who should care for the elderly? An east-west value divide. World Scientific, River Edge, pp 27-54, 2000), Multidimensional Measure of Islamic Spirituality (Dasti and Sitwat in J Muslim Ment Health 8(2):47-67, 2014. doi: 10.3998/jmmh.10381607.0008.204 ) and Ryff Scale of Psychological Well-being (Ryff in J Pers Soc Psychol 57(6):1069-1081, 1989. doi: 10.1037/0022-3514.57.6.1069 ) were administered on a sample of 80 parents (32 fathers and 48 mothers) recruited from different Thalassemic Centers of Lahore city, Pakistan. Data were analyzed through correlation and mediational analyses. Results indicated that the caregiver burden was negatively correlated with the psychological well-being and the domains of spirituality, while the psychological well-being and spirituality were positively correlated. We identified that the caregiver burden has direct effect on the psychological well-being of the parents and it influences the psychological well-being through the pathway of the two domains of spirituality, i.e., self-discipline and meanness-generosity. These results highlighted the role of spirituality upon the psychological well-being of caregivers, which could be utilized to prevent pathological influences (such as hard feelings, hopelessness, depressed mood, anxiety, and relationship problems) of caregiver burden and enhance psychological well-being through spiritual counseling. Caregivers can work on their well-being and burden by disciplining their lives and forgoing hard feelings toward others.

  1. Impact of living with bipolar patients: Making sense of caregivers' burden.

    PubMed

    Pompili, Maurizio; Harnic, Désirée; Gonda, Xenia; Forte, Alberto; Dominici, Giovanni; Innamorati, Marco; Fountoulakis, Konstantinos N; Serafini, Gianluca; Sher, Leo; Janiri, Luigi; Rihmer, Zoltan; Amore, Mario; Girardi, Paolo

    2014-03-22

    The aim of the present review was to examine objective and subjective burdens in primary caregivers (usually family members) of patients with bipolar disorder (BD) and to list which symptoms of the patients are considered more burdensome by the caregivers. In order to provide a critical review about caregiver's burden in patients with bipolar disorder, we performed a detailed PubMed, BioMedCentral, ISI Web of Science, PsycINFO, Elsevier Science Direct and Cochrane Library search to identify all papers and book chapters in English published during the period between 1963 and November 2011. The highest levels of distress were caused by the patient's behavior and the patient's role dysfunction (work, education and social relationships). Furthermore, the caregiving role compromises other social roles occupied by the caregiver, becoming part of the heavy social cost of bipolar affective disorder. There is a need to better understand caregivers' views and personal perceptions of the stresses and demands arising from caring for someone with BD in order to develop practical appropriate interventions and to improve the training of caregivers.

  2. An analysis of caregiver burden of patients with hemodialysis and peritoneal dialysis.

    PubMed

    Cantekin, Işın; Kavurmacı, Mehtap; Tan, Mehtap

    2016-01-01

    Since caregivers have roles and responsibilities in all phases from the diagnosis of the disease to discharge and homecare, their care burdens increase. The problems experienced by caregivers, whose care burden increase and accordingly whose life quality is deteriorated, complicate the treatment-receiving patient's adaptation to the disease. This study was performed to determine the burden to primary caregivers of patients undergoing dialysis. This descriptive study was conducted with the family caregivers of 114 patients from Erzurum Ataturk University's Medical Faculty Nephrology Department: 54 were relatives of patients receiving hemodialysis and 60 were relatives of patients receiving peritoneal dialysis during August to December 2014. The percentage of the patients with low levels of caregiver burden is 13% in the hemodialysis group, while it is 35% in the peritoneal dialysis group. These findings are statistically significant. To conclude, chronic diseases affect not only patients, but also their relatives who care for them. Nursing care needs to include both patients and their relatives and support them. It is hoped that this study will guide nursing care in this direction.

  3. Burden, coping and needs for support of caregivers for patients with a bipolar disorder: a systematic review.

    PubMed

    van der Voort, T Y G; Goossens, P J J; van der Bijl, J J

    2007-10-01

    This study was aimed to highlight the factors which influence experienced burden, coping and needs for support of caregivers for patients with a bipolar disorder. Research articles meeting content and methodological quality criteria from January 1995 through October 2005 were reviewed. High objective and subjective burden is experienced by these caregivers. Subjective burden is extremely influenced by illness beliefs. High burden is associated more with severity of symptoms (than diagnosis), difficulties in the relationship with patient, lack of support and stigma. Coping is influenced by appraisal and burden. Different phases in the process of caregiving require different coping mechanisms. Little research is available on effectiveness of coping mechanisms and needs for support. Suggestions are nevertheless found in the literature for professional support. Caregivers of patients with a bipolar disorder experience high burden and try to cope in different ways. Little research is available on coping styles and needs for support. However, recommendations can be made to increase support for these caregivers.

  4. The Association of Satisfaction and Perceived Burden With Anxiety and Depression in Primary Caregivers of Dependent Elderly Relatives.

    PubMed

    del-Pino-Casado, Rafael; Palomino-Moral, Pedro A; Frías-Osuna, Antonio

    2015-10-01

    Some researchers have viewed caregiver burden and satisfaction as two ends of the same continuum rather than as independent aspects of the caregiving experience. We conducted a cross-sectional study of primary caregivers of dependent elderly relatives in Spain (N = 200; probabilistic sample), to determine whether satisfaction and perceived burden coexisted in caregivers, and whether these variables, considered separately and in combination, were associated with anxiety and depression, while controlling for objective aspects of care recipients' needs. Data on satisfaction with care, perceived burden, objective burden, anxiety, and depression were gathered in 2013 by interviews in caregivers' homes. Descriptive, bivariate, and multivariate analyses were performed. Of the 200 primary caregivers, 12.5% reported both high satisfaction with care and high perceived burden. Anxiety and depression levels were lower in caregivers with high satisfaction and low perceived burden than in those with low satisfaction and high burden or with high satisfaction and high burden. Our findings support the following conclusions: (1) Satisfaction may be experienced despite the presence of stressful factors; (2) the combination of high satisfaction and low burden might have protective effects on anxiety and depression in caregivers.

  5. Effects of Frequent Hemodialysis on Perceived Caregiver Burden in the Frequent Hemodialysis Network Trials

    PubMed Central

    Larive, Brett; Hall, Yoshio; Kimmel, Paul L.; Kliger, Alan S.; Levin, Nathan; Kurella Tamura, Manjula; Chertow, Glenn M.

    2014-01-01

    Background and objectives Patients receiving hemodialysis often perceive their caregivers are overburdened. We hypothesize that increasing hemodialysis frequency would result in higher patient perceptions of burden on their unpaid caregivers. Design, setting, participants, & measurements In two separate trials, 245 patients were randomized to receive in-center daily hemodialysis (6 days/week) or conventional hemodialysis (3 days/week) while 87 patients were randomized to receive home nocturnal hemodialysis (6 nights/week) or home conventional hemodialysis for 12 months. Changes in overall mean scores over time in the 10-question Cousineau perceived burden scale were compared. Results In total, 173 of 245 (70%) and 80 of 87 (92%) randomized patients in the Daily and Nocturnal Trials, respectively, reported having an unpaid caregiver at baseline or during follow-up. Relative to in-center conventional dialysis, the 12-month change in mean perceived burden score with in-center daily hemodialysis was −2.1 (95% confidence interval, −9.4 to +5.3; P=0.58). Relative to home conventional dialysis, the 12-month change in mean perceived burden score with home nocturnal dialysis was +6.1 (95% confidence interval, −0.8 to +13.1; P=0.08). After multiple imputation for missing data in the Nocturnal Trial, the relative difference between home nocturnal and home conventional hemodialysis was +9.4 (95% confidence interval, +0.55 to +18.3; P=0.04). In the Nocturnal Trial, changes in perceived burden were inversely correlated with adherence to dialysis treatments (Pearson r=−0.35; P=0.02). Conclusion Relative to conventional hemodialysis, in-center daily hemodialysis did not result in higher perceptions of caregiver burden. There was a trend to higher perceived caregiver burden among patients randomized to home nocturnal hemodialysis. These findings may have implications for the adoption of and adherence to frequent nocturnal hemodialysis. PMID:24721892

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

    PubMed Central

    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

  7. Effectiveness of Problem-Focused Coping Strategies on the Burden on Caregivers of Hemodialysis Patients

    PubMed Central

    Ghane, Golnar; Ashghali Farahani, Mansoureh; Seyedfatemi, Naima; Haghani, Hamid

    2016-01-01

    Background Studies have shown that family caregivers of hemodialysis patients experience high levels of burden. However, these caregivers are often neglected, and no studies are available on the effectiveness of coping strategies on the burden of care among these caregivers. Objectives This study aimed to examine the effectiveness of problem-focused coping strategies (communication skills, anger management, and deep breathing) on the burden on caregivers of hemodialysis patients. Patients and Methods A randomized controlled clinical trial was conducted on 76 family caregivers of hemodialysis patients referred to Shahid Hasheminejad hemodialysis center in Tehran, Iran. The subjects were equally allocated into two groups of 38. Through a coin-tossing method, caregivers of patients who referred on even or odd days of the week were randomly assigned into the intervention group or the control group, respectively. The intervention group received four training sessions on problem-focused coping strategies, but the control group did not receive any intervention. Both groups answered the caregiver’s burnout inventory at the start and six weeks after the last educational session. Descriptive statistics, chi-square, Fisher’s exact test, independent-samples t-test, and Mann-Whitney U test were used to analyze the data. Results The majority of caregivers (54%) were in the age range of 35 - 55 years, female (68.4%), and married (70%). No significant difference was found between the baseline mean caregivers’ burden scores of the intervention and control groups (88.56 ± 11.74 vs. 84.97 ± 15.13, P = 0.308). However, the mean caregivers’ burden in the intervention group decreased, and the two groups were significantly different at the end of the study (58.77 ± 6.64 vs. 87.84 ± 11.74, P < 0.001). Conclusions The current study showed the effectiveness of problem-focused coping strategies on reducing the burden on caregivers of hemodialysis patients. Authorities and

  8. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    ERIC Educational Resources Information Center

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

  9. Modeling the Social Determinants of Caregiver Burden among Families of Children with Developmental Disabilities

    ERIC Educational Resources Information Center

    McManus, Beth M.; Carle, Adam; Acevedo-Garcia, Dolores; Ganz, Michael; Hauser-Cram, Penny; McCormick, Marie

    2011-01-01

    This study described predictors of caregiver burden among parents of children with developmental disabilities. The sample, obtained from the 2005-2006 National Survey of Children With Special Health Care Needs, included 12,225 children, aged 5 to 17 years, with a developmental disability. Structural equation modeling assessed the relationships…

  10. [Caregiver burden in relatives of persons with schizophrenia: an overview of measure instruments].

    PubMed

    Reine, G; Lancon, C; Simeoni, M C; Duplan, S; Auquier, P

    2003-01-01

    The high prevalence and chronic evolution of schizophrenia are responsible for a major social cost. The adverse consequences of such psychiatric disorders for relatives have been studied since the early 1950s, when psychiatric institutions began discharging patients into the community. According to Treudley (1946) "burden on the family" refers to the consequences for those in close contact with a severely disturbed psychiatric patient. Grad and Sainsbury (1963) and Hoenig and Hamilton (1966) developed the first burden scales for caregivers of severely mentally ill patients, and a number of authors further developed instruments trying to distinguish between "objective" and "subjective" burden. Objective burden concerns the patient's symptoms, behaviour and socio-demographic characteristics, but also the changes in household routine, family or social relations, work, leisure time, physical health.... Subjective burden is the mental health and subjective distress among family members. While the first authors referred to those problems which are deemed to be related to, or caused by the patient, Platt et al. (1983) tried to distinguish between the occurrence of a problem, its alleged aetiology, and the perceived distress, when developing the SBAS questionnaire. These authors also proposed separate evaluations of behavioral disturbance and social performance by relatives, and a report of extra-disease stressors in family life. The SBAS is actually the most complete, but also complex instrument for evaluating burden in caregivers. Since 1967 Pasamanick and others proposed questionnaires for burden evaluation in relatives of schizophrenic patients. Relatives may be included in specific psychoeducational programs, but few of these programs have been evaluated in terms of caregiver burden. The theoretical approach in schizophrenia was not different from that one adopted in mentally ill population. Some instruments were validated first in a mentally ill group and then

  11. Heroes of health care: a window on caregiver burden.

    PubMed

    1994-08-01

    On Wednesday, March 23, 51 older Americans came to Washington, DC, to deliver their unique messages concerning the need for long-term care and a health care system responsive to the needs of older Americans. HealthRIGHT, a coalition created to capture Americans' views on the health care system and what needs to be done to improve it, orchestrated the event. In an extraordinary briefing session in the Rayburn House Office Building, First Lady Hillary Rodham Clinton was present with congressional leaders to hear these stories. Several of the witnesses focused on Alzheimer's patients or their caregivers. CARING is pleased to include their stories here, as testimony to the major effect this terrible disease can have on a family.

  12. Heroes of health care: a window on caregiver burden.

    PubMed

    1994-08-01

    On Wednesday, March 23, 51 older Americans came to Washington, DC, to deliver their unique messages concerning the need for long-term care and a health care system responsive to the needs of older Americans. HealthRIGHT, a coalition created to capture Americans' views on the health care system and what needs to be done to improve it, orchestrated the event. In an extraordinary briefing session in the Rayburn House Office Building, First Lady Hillary Rodham Clinton was present with congressional leaders to hear these stories. Several of the witnesses focused on Alzheimer's patients or their caregivers. CARING is pleased to include their stories here, as testimony to the major effect this terrible disease can have on a family. PMID:10171929

  13. Easing the Burden of Caregiving: The Impact of Consumer Direction on Primary Informal Caregivers in Arkansas

    ERIC Educational Resources Information Center

    Foster, Leslie; Brown, Randall; Phillips, Barbara; Carlson, Barbara Lepidus

    2005-01-01

    Purpose: We assess the effect of consumer-directed care on the emotional, physical, and financial well-being of the primary informal caregivers of the Medicaid beneficiaries who voluntarily joined Arkansas's Cash and Counseling demonstration. Design and Methods: The demonstration randomly assigned beneficiaries to a program in which they could…

  14. The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers

    ERIC Educational Resources Information Center

    Holley, Caitlin K.; Mast, Benjamin T.

    2009-01-01

    Purpose: Interest in anticipatory grief (AG) has typically focused on terminal diseases such as cancer. However, the issues involved in AG are unique in the context of dementia due to the progressive deterioration of both cognitive and physical abilities. The current study investigated the nature of AG in a sample of dementia caregivers and…

  15. Ancillary benefits for caregivers of children with asthma participating in an environmental intervention study to alleviate asthma symptoms.

    PubMed

    Clougherty, Jane E; Kubzansky, Laura D; Spengler, John D; Levy, Jonathan I

    2009-03-01

    Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers' lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers' quality of life related to their child's asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child's AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children's AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers. PMID:19184446

  16. Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

    PubMed Central

    Bayen, E.; Papeix, C.; Pradat-Diehl, P.; Lubetzki, C.; Joël, M. E.

    2015-01-01

    Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs). Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)). Results. ICs (N = 99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas coresidency and IC's female gender correlated with objective burden only and IC's poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score. Conclusion. Evaluation of MS disability course and IC's personal situation is crucial to understand the burden process and to implement adequate interventions in MS. PMID:26078487

  17. Theory of mind impairment in patients with behavioural variant fronto-temporal dementia (bv-FTD) increases caregiver burden

    PubMed Central

    Brioschi Guevara, Andrea; Knutson, Kristine M.; Wassermann, Eric M.; Pulaski, Sarah; Grafman, Jordan; Krueger, Frank

    2015-01-01

    Background: Theory of mind (ToM), the capacity to infer the intention, beliefs and emotional states of others, is frequently impaired in behavioural variant fronto-temporal dementia patients (bv-FTDp); however, its impact on caregiver burden is unexplored. Setting: National Institute of Neurological Disorders and Stroke, National Institutes of Health. Subjects: bv-FTDp (n = 28), a subgroup of their caregivers (n = 20) and healthy controls (n = 32). Methods: we applied a faux-pas (FP) task as a ToM measure in bv-FTDp and healthy controls and the Zarit Burden Interview as a measure of burden in patients' caregivers. Patients underwent structural MRI; we used voxel-based morphometry to examine relationships between regional atrophy and ToM impairment and caregiver burden. Results: FP task performance was impaired in bv-FTDp and negatively associated with caregiver burden. Atrophy was found in areas involved in ToM. Caregiver burden increased with greater atrophy in left lateral premotor cortex, a region associated in animal models with the presence of mirror neurons, possibly involved in empathy. Conclusion: ToM impairment in bv-FTDp is associated with increased caregiver burden. PMID:26025914

  18. Confirmatory Factor Analysis of a Brief Version of the Zarit Burden Interview in Black and White Dementia Caregivers

    ERIC Educational Resources Information Center

    Flynn Longmire, Crystal V.; Knight, Bob G.

    2011-01-01

    Purpose of the study: Although the Zarit Burden Interview (ZBI) is one of the most extensively used measures in research for caregiver burden, few researchers have examined its factor structure. Furthermore, though the ZBI has also been used in cross-group comparisons of burden, there have not been studies of whether or not it measures burden…

  19. Ancillary Benefits for Caregivers of Children with Asthma Participating in an Environmental Intervention Study to Alleviate Asthma Symptoms

    PubMed Central

    Kubzansky, Laura D.; Spengler, John D.; Levy, Jonathan I.

    2009-01-01

    Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers’ lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers’ quality of life related to their child’s asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child’s AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children’s AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers PMID:19184446

  20. Caregivers of Demented Elders: The Impact of Adult Day Care Service on Reducing Perceived Degree of Burden.

    ERIC Educational Resources Information Center

    Eddowes, Jeannette Rickner

    The New Jersey State Department of Health, Gerontology Program, awarded grants to 32 adult day care centers statewide for the provision of specialized service for victims of Alzheimer's disease and related disorders and their caregivers. The primary goals of the programs were to reduce caregiver burden through providing social supports and to…

  1. The Effect of a Support and Education Program on Stress and Burden among Family Caregivers to Frail Elderly Persons.

    ERIC Educational Resources Information Center

    Greene, Vernon L.; Monahan, Deborah J.

    1989-01-01

    Studied effects on family caregivers (N=208) of frail elderly persons of eight-week professionally guided caregiver support group program to reduce anxiety, depression, and sense of burden. Found significant reductions immediately after intervention and continued but weaker effects four months later. (Author/CM)

  2. Declining Patient Functioning and Caregiver Burden/Health: The Minnesota Stroke Survey-Quality of Life after Stroke Study

    ERIC Educational Resources Information Center

    Nelson, Melissa M.; Smith, Maureen A.; Martinson, Brian C.; Kind, Amy; Luepker, Russell V.

    2008-01-01

    Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, then caregiver burden and health may be influenced more by worsening in patient functioning than by static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and…

  3. Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study

    PubMed Central

    2013-01-01

    Background The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens. The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. Methods A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. Results A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less

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

    PubMed

    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.

  5. The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

    PubMed Central

    da Silva, Luiz Bernardino Lima; Ivo, Maria Lúcia; de Souza, Albert Schiaveto; Pontes, Elenir Rose Jardim Cury; Pinto, Alexandra Maria Almeida Carvalho; de Araujo, Olinda Maria Rodrigues

    2012-01-01

    Objective To assess the burden and quality of life of caregivers of patients with sickle cell anemia taking hydroxyurea versus those of patients not taking hydroxyurea. Methods A cross-sectional study was performed of caregivers of outpatients with sickle cell anemia in two public hospitals in Campo Grande, MS, from January through June 2010. The World Health Organization Quality of Life-BREF Scale and the Caregiver Burden Scale were used. Results Of the 37 caregivers in this study, 81.1% were women, 73.0% were mothers, 59.5% were married, 54.1%were mulattos, 48.6% were housewives, 54.1% had family incomes of up to one minimum wage and 75.7% had onlycompleted elementary education. The mean duration of care provided (time after diagnosis) was 16.08 ± 9.88 yearsand 89.2% reported that they provided 24-hour care. Regarding health, 27.0% of study participants reported having physical and 13.5% emotional problems. There were no significant relationships between these variables either with the different domains or the total score of the WHOQOL-BREF comparing caregivers of patients taking hydroxyurea versusthose of patients not taking hydroxyurea. There was a moderate negative linear correlation between the WHOQOL-BREF and the Caregiver Burden Scale scores (linear correlation test of Pearson: p-value = 0.003, r = -0.477). The burden of caregivers of patients who did not take hydroxyurea was significantly higher than those of patients who took the medication in terms of general tension, disappointment, environment and total score (student t-test: p-value < 0.05). Conclusion In the perception of the caregiver, looking after sickle cell anemia patients represents a moderate negative burden. PMID:23049439

  6. Use of psychotropic medications by caregivers of elderly patients with dementia: is this a sign of caregiver burden?

    PubMed

    Camargos, Einstein Francisco; Souza, Andrea Brígida; Nascimento, Aline Silva; Morais-E-Silva, Alessandra Cicari; Quintas, Juliana Lima; Louzada, Luciana Lilian; Medeiros-Souza, Patricia

    2012-03-01

    This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63%) were caregivers of patients with dementia and 115 (37%) were caregivers of patients without dementia. Forty-four caregivers (14.1%) were taking psychotropic drugs (benzodiazepines or antidepressants), and this usage was more frequent among caregivers of patients with dementia (p<0.01). Twenty-two caregivers of patients with dementia (11.4%) had used sleeping pills after beginning care, compared with only five (4.3%) caregivers of patients without dementia (p<0.01). In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants) more frequently than the ones of patients without dementia. PMID:22392108

  7. Caregiver Burden as People with Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder Transition into Adolescence and Adulthood in the United Kingdom

    ERIC Educational Resources Information Center

    Cadman, Tim; Eklund, Hanna; Howley, Deirdre; Hayward, Hannah; Clarke, Hanna; Findon, James; Xenitidis, Kiriakos; Murphy, Declan; Asherson, Philip; Glaser, Karen

    2012-01-01

    Objective: There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into…

  8. Adjustment Difficulties and Caregiving Burdens Faced by College Students with a Parent with Bipolar or Depressive Disorders

    ERIC Educational Resources Information Center

    Crandall, Erin K.; Ruggero, Camilo J.; Bain, Kathleen; Kilmer, Jared

    2014-01-01

    College campuses often host students who come from families where one or more parent has been affected by a bipolar or depressive disorder. The present study sought to determine whether these students face unique challenges in college, including increased adjustment difficulties as well as greater caregiving burden associated with their…

  9. The Burden of Aging: A Theoretical Framework for Understanding the Shifting Balance of Caregiving and Care Receiving as Cohorts Age.

    ERIC Educational Resources Information Center

    Uhlenberg, Peter

    1996-01-01

    Develops a theoretical framework that explicates factors determining the level of care given and care received by cohorts moving through different stages of later life. Specifies four proximate determinants of caregiving and three proximate determinants of care receiving. Focuses on social changes that could reduce the burden of aging. (RJM)

  10. Drug treatment of Alzheimer's disease. Effects on caregiver burden and patient quality of life.

    PubMed

    Hollister, L; Gruber, N

    1996-01-01

    Alzheimer's disease is a devastating illness that will become more common as the population ages. Although clinical diagnosis of the illness is not certain without histological examination of the brain, and misdiagnosis may occur, broad working criteria to help diagnose the likely presence of Alzheimer's disease are available. Thoughtful clinical evaluation improves diagnostic accuracy, and appropriately diagnosed patients are critical for involvement in research into new antidementia agents. Essential to the discovery of new drugs is careful measurement of illness response. A variety of scales--some aimed at patients, others at their caregivers, and yet others for clinicians--assess Alzheimer's disease severity, progression, symptom response, and quality of life. Of note, patient response is not the only measurement of treatment benefit today. Growing interest is also being placed on tracking the possible amelioration of caregiver 'burden'. This burden refers to the psychological, physical, and material costs of providing care for an Alzheimer's patient over long periods of time. A number of scales and questionnaires have been developed and are occasionally used. Many drugs have been tried in Alzheimer's disease, but very few have produced any benefit, and this is often modest. Ergoloid mesylates, initially thought to be effective, are now considered of little value. The cholinomimetic drugs, especially the acetylcholinesterase inhibitor tacrine, have provided a very modest benefit, slowing the progression of the illness for a number of months. No cognitive improvement has been noted with the various nootropic agents such as piracetam. Early studies with levacecarnine (acetyl-L-carnitine), a substance that facilitates the use of fatty acids, memantidine, the dimethyl derivative of amantidine, and the calcium channel blocker nimodipine, have shown some promise, but require larger, more rigorous studies. As mentioned above, documenting effects in individual patients

  11. Caregiving burden and uplifts: a contradiction or a protective partnership for the quality of life of parents and their children with asthma?

    PubMed

    Silva, Neuza; Carona, Carlos; Crespo, Carla; Canavarro, Maria Cristina

    2015-04-01

    Parental caregiving in the context of pediatric chronic conditions is a multifaceted experience that encompasses negative (burdens) and positive dimensions (uplifts), which may support risk and protective processes that influence family adaptation. This study aimed to examine the caregiving experience of parents caring for a child with asthma and the moderating role of caregiving uplifts on the associations between caregiving burden and quality of life (QoL) of parents and their children. Participants were 180 dyads of children/adolescents with asthma between 8 and 18 years of age and one of their parents. The parents reported on caregiving burden and uplifts and on their QoL, and the children/adolescents completed a self-report measure of generic QoL. Results showed that although parents of children with intermittent asthma and parents of younger children presented higher levels of caregiving burden, noncontrolled asthma was the only clinical variable representing a significant risk factor for decreased QoL in children. Significant negative and positive associations were found between burden dimensions and QoL and between caregiving uplifts and QoL, respectively, in parents and children. Additionally, caregiving uplifts moderated the negative link between relationship burden and parents' QoL. These results suggest that, far from being contradictory, caregiving uplifts may co-occur with high levels of burden and may constitute a protective factor against the deleterious effect of the caregiving burden on parents' QoL and a resource that directly contributes to children's QoL. This risk-resistance approach to family caregiving may contribute to operationalizing strength-based interventions in the context of pediatric asthma.

  12. Life situations and the care burden for stroke patients and their informal caregivers in a prospective cohort study

    PubMed Central

    Borgquist, Lars; Svärdsudd, Kurt

    2015-01-01

    Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ≥65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high. PMID:26074171

  13. Caregivers for Dementia Patients: Complex Determinants of Well-Being and Burden.

    ERIC Educational Resources Information Center

    Gwyther, Lisa P.; George, Linda K.

    1986-01-01

    This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)

  14. Differences in Rate of Cognitive Decline and Caregiver Burden between Alzheimer’s Disease and Vascular Dementia: a Retrospective Study

    PubMed Central

    Pilon, Marie-Hélène; Poulin, Stéphane; Fortin, Marie-Pierre; Houde, Michèle; Verret, Louis; Bouchard, Rémi W.; Laforce, Robert

    2016-01-01

    Few studies have explored the rate of cognitive decline and caregiver burden within the context of a specialized memory clinic. When this was done, the focus was largely on functional decline related to Alzheimer’s disease (AD). Our goal was to compare the longitudinal decline of AD patients to those with Vascular Dementia (VaD) on Mini-Mental State Examination (MMSE). We further explored the differential impact on caregiver burden. We retrospectively studied 237 charts from patients seen at our Memory Clinic between 2006 and 2012. The data was collected over 17 years. Cohorts were formed by excluding conditions other than AD and VaD, and including patients who had been assessed at least twice with the MMSE (AD: n = 83; mean age: 67.7 yo; VaD: n = 32; mean age: 73.3yo). A small group of 36 caregivers was surveyed by phone to explore caregiver burden. Results indicated that the natural history of MMSE changes in AD patients differed significantly from that of patients with VaD (F = 10.41, p<0.0014), with AD patients showing more cognitive decline over time. Sadness, stress/anxiety, fatigue, and sleep disorders were reported as the main preoccupations by caregivers and its impact was rated as ‘severe’ in 50% of cases. Altogether, this study provides further insight into the natural history of cognitive decline in AD and VaD. Future studies should explore the progression of dementing disorders in larger cohorts using prospective methodological designs. PMID:27747317

  15. Cross-national differences in the prevalence and correlates of burden among older family caregivers in the WHO World Mental Health (WMH) Surveys

    PubMed Central

    Shahly, V.; Chatterji, S.; Gruber, M. J.; Al-Hamzawi, A.; Alonso, J.; Andrade, L. H.; Angermeyer, M. C.; Bruffaerts, R.; Bunting, B.; Caldas-de-Almeida, J. M.; de Girolamo, G.; de Jonge, P.; Florescu, S.; Gureje, O.; Haro, J. M.; Hinkov, H. R.; Hu, C.; Karam, E. G.; Lépine, J.-P.; Levinson, D.; Medina-Mora, M. E.; Posada-Villa, J.; Sampson, N. A.; Trivedi, J.K.; Viana, M. C.; Kessler, R. C.

    2014-01-01

    Background Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiologic research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Methods Cross-sectional community surveys in 20 countries asked 13,892 respondents ages 50+ about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly-defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status, and type of condition. Results Among the 26.9-42.5% respondents in high, upper-middle, and low/lower-middle income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours/week given any was 16.6-23.6 (169.9-205.8 hours/week/100 people ages 50+). Burden in low/lower-middle income countries was 2-3-fold higher than in higher income countries, with financial burden given any averaging 14.3% of median family income in high, 17.7% in upper-middle, and 39.8% in low/lower-middle income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Conclusions Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low/lower-middle income countries. PMID:22877824

  16. Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore.

    PubMed

    Tay, Kay Chai Peter; Seow, Chuen Chai Dennis; Xiao, Chunxiang; Lee, Hui Min Julian; Chiu, Helen F K; Chan, Sally Wai-Chi

    2016-03-01

    Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale - Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.

  17. Caring for the brain tumor patient: Family caregiver burden and unmet needs

    PubMed Central

    Schubart, Jane R.; Kinzie, Mable B.; Farace, Elana

    2008-01-01

    The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers. PMID:17993635

  18. The effect of a culturally-informed therapy on self-conscious emotions and burden in caregivers of patients with schizophrenia: A randomized clinical trial

    PubMed Central

    Weisman de Mamani, Amy; Suro, Giulia

    2015-01-01

    Objective Caring for a family member with schizophrenia often results in high degrees of self-conscious emotions (shame and guilt/self -blame), burden, and other serious mental health consequences. Research suggests that ethnic and cultural factors strongly influence the manner in which family members respond to mental illness. Research further indicates that certain cultural practices and values (spirituality, collectivism) may assist family members in coping with the self-conscious emotions and burden associated with caregiving. With this in mind, we have developed a family focused, culturally-informed treatment for schizophrenia (CIT-S). Method Using a sample of 113 caregivers of patients with schizophrenia (60% Hispanic, 28.2% Caucasian, 8% African American and 3.8% “Other”), we assessed the ability of CIT-S to reduce self-conscious emotions and caregiver burden above and beyond a three-session psychoeducation (PSY-ED) control condition. We further examined whether self-conscious emotions mediated the relationship between treatment type and caregiver burden. Results In line with expectations, CIT-S was found to outperform PSY-ED in reducing guilt/self-blame and caregiver burden. Furthermore, consistent with hypotheses, reductions in guilt/self-blame were found to mediate the changes observed between treatment type and caregiver burden. While caregivers in both treatment groups demonstrated significant post treatment reductions in shame, CIT-S was not found to outperform PSY-ED in reducing levels of this construct. Conclusions Results suggest that caregivers of patients with schizophrenia may respond well to a treatment that specifically taps in to their cultural beliefs, values, and behaviors in helping them cope with schizophrenia in a loved one. Study implications and future directions are discussed. PMID:26654115

  19. The relief of a caregiver's burden through guided imagery, role-playing, humor, and paradoxical intervention.

    PubMed

    Yip, Kam-Shing

    2003-01-01

    Caregiving by relatives to a person with mental illness is demanding and overwhelming. This paper describes how to use guided imagery, role-playing, humor, and paradoxical intervention to help the wife of a man with mental illness in easing her worry, anxiety, and frustration engendered by caregiving. The intervention made the wife feel normal and relaxed in facing the "symptoms" of her husband's mental illness. It also revived the wife's patience, hope, and strength in the process of rehabilitation.

  20. Stress and Burden among Caregivers of Patients with Lewy Body Dementia

    ERIC Educational Resources Information Center

    Leggett, Amanda N.; Zarit, Steven; Taylor, Angela; Galvin, James E.

    2011-01-01

    Purpose: Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared with other types of dementia. Prominent difficulties include motor impairment, activities of daily living (ADLs) disability, recurrent behavioral and emotional problems (BEPs), and diagnostic difficulties. These…

  1. Canada's Compassionate Care Benefit: Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

    PubMed Central

    2011-01-01

    Background An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. Methods As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Results Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. Conclusions This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to

  2. Similarities amid the Difference: Caregiving Burden and Adaptation Outcomes in Dyads of Parents and Their Children with and without Cerebral Palsy

    ERIC Educational Resources Information Center

    Carona, C.; Crespo, C.; Canavarro, M. C.

    2013-01-01

    This study had two main objectives: first, to examine the direct and indirect effects, via social support, of caregiving burden on the adaptation outcomes of children/adolescents with cerebral palsy and their parents; and second, to assess the invariance of such models in clinical vs. healthy subsamples. Participants were 210 dyads of…

  3. Self-Efficacy Is Associated with Less Burden and More Gains from Behavioral Problems of Alzheimer's Disease in Hong Kong Chinese Caregivers

    ERIC Educational Resources Information Center

    Cheng, Sheung-Tak; Lam, Linda C. W.; Kwok, Timothy; Ng, Natalie S. S.; Fung, Ada W. T.

    2013-01-01

    Purpose: To test the effects of different self-efficacy beliefs on caregiver appraisals and depressive symptoms. We hypothesized that self-efficacy has a direct effect on depression while moderating the effects of behavioral problems on both negative (i.e., burden) and positive (i.e., uplifting) appraisals. Design and Methods: Ninety-nine Chinese…

  4. Informal hospice caregiver pain management concerns: A qualitative study

    PubMed Central

    Kelley, Marjorie; Demiris, George; Nguyen, Huong; Oliver, Debra P; Wittenberg-Lyles, Elaine

    2014-01-01

    Background Informal, unpaid, family caregivers provide much hospice care in the United States. These caregivers suffer physically, psychologically, emotionally, and socially from the burden of caring. The most often identified area of caregiver burden is the management of end-of-life pain. However, little empirical evidence exists of effective interventions to help caregivers manage end-of-life pain, and issues surrounding caregiver pain management remain vague and undefined. Understanding these concerns will inform the design of effective caregiver interventions. Aim The purpose of this study was to describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients. Design A content analysis of secondary data, namely, recordings of caregiver interviews, was conducted to describe pain management issues. These interviews were part of a larger clinical trial. Setting/participants Multiple sessions with 29 informal caregivers, of patients dying of cancer, were audio-recorded. Subjects were purposively selected from two hospice programs in the Northwestern United States. Caregivers of noncancer patients were excluded from the study sample. Results A framework of six major themes with subordinate subthemes was developed through a literature review and peer review. The framework was used to organize the content of 87 caregiver interviews. The six major themes identified in the analysis included Caregiver-Centric Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Communication and Teamwork Issues, Organizational Skill Issues, and Patient-Centric Issues. Conclusion This analysis clearly articulated and classified caregiver issues surrounding pain management. Future hospice research may benefit from the use of this analysis and framework in the development of tools to alleviate this major cause of caregiver burden. PMID:23612959

  5. A Disproportionate Burden of Care: Gender Differences in Mental Health, Health-Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers

    PubMed Central

    Perrin, Paul B.; Panyavin, Ivan; Morlett Paredes, Alejandra; Aguayo, Adriana; Macias, Miguel Angel; Rabago, Brenda; Picot, Sandra J. Fulton; Arango-Lasprilla, Juan Carlos

    2015-01-01

    Background. Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p = 0.006), HRQOL (p < 0.001), and social support (p < 0.001). This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p = 0.018) and for nearly three times as many months (66.31 versus 24.30, p = 0.002). Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning. PMID:26538818

  6. Feed First, Ask Questions Later: Alleviating and Understanding Caregiver Food Insecurity in an Urban Children’s Hospital

    PubMed Central

    Thorngren, Daniel; Lindau, Stacy Tessler

    2015-01-01

    Objectives. We estimated the prevalence of caregiver hospital food insecurity (defined as not getting enough to eat during a child’s hospitalization), examined associations between food insecurity and barriers to food access, and propose a conceptual framework to inform remedies to this problem. Methods. We conducted a cross-sectional study of 200 caregivers of hospitalized children in Chicago, Illinois (June through December 2011). A self-administered questionnaire assessed sociodemographic characteristics, barriers to food, and caregiver hospital food insecurity. Results. Caregiver hospital food insecurity was prevalent (32%). Caregivers who were aged 18 to 34 years, Black or African American, unpartnered, and with less education were more likely to experience hospital food insecurity. Not having enough money to buy food at the hospital, lack of reliable transportation, and lack of knowledge of where to get food at the hospital were associated with hospital food insecurity. The proposed conceptual framework posits a bidirectional relationship between food insecurity and health, emphasizing the interdependencies between caregiver food insecurity and patient outcomes. Conclusions. Strategies are needed to identify and feed caregivers and to eradicate food insecurity in homes of children with serious illness. PMID:26066937

  7. The Zarit Caregiver Burden Interview Short Form (ZBI-12) in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version

    PubMed Central

    Rajabi-Mashhadi, Mohammad T; Mashhadinejad, Hosein; Ebrahimzadeh, Mohammad H; Golhasani-Keshtan, Farideh; Ebrahimi, Hanieh; Zarei, Zahra

    2015-01-01

    Background: To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12) in the Iranian population. Methods: After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran- Iraq war (1980-88) veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing. In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Results: Generally, the internal consistency of the questionnaire was found to be strong (Cronbach's alpha 0.77). Intercorrelation matrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03),General Health (P=0.034),Social Functional (0.037), Mental Health (0.023) and Q3 with Physical Function (P=0.001),Viltality (0.002), Socil Function (0.001). Conclusions: Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury. PMID:25692171

  8. Psychosocial functioning among HIV-affected youth and their caregivers in Haiti: implications for family-focused service provision in high HIV burden settings.

    PubMed

    Smith Fawzi, Mary C; Eustache, Eddy; Oswald, Catherine; Surkan, Pamela; Louis, Ermaze; Scanlan, Fiona; Wong, Richard; Li, Michelle; Mukherjee, Joia

    2010-03-01

    The study is an analysis of baseline data from a pilot psychosocial support intervention for HIV-affected youth and their caregivers in Haiti. Six sites in Haiti's Central Department affiliated with Partners In Health/Zanmi Lasante (PIH/ZL) and the Haitian Ministry of Health were included. Participants were recruited from a list of HIV-positive patients receiving care at PIH/ZL. The baseline questionnaire was administered from February 2006 to January 2007 with HIV-affected youth (n = 492), ages 10-17, and their caregivers (n = 330). According to findings at baseline, the youth reported high levels of anxiety, including constant fidgeting (86%), restlessness (83%), and worrying a lot (56%). Their parents/caregivers also reported a high level of depressive symptoms, such as low energy (73%), feeling everything is an effort (71%), and sadness (69%). Parents' depressive symptoms were positively associated with their children's psychological symptoms (odds ratio [OR] =1.6-2.4) and psychosocial functioning (OR =1.6 according to parental report). The significant levels of anxiety and depression observed among HIV-affected youth and their caregivers suggest that psychosocial interventions are needed among HIV-affected families in central Haiti and other high HIV burden areas. The results suggest that a family-focused approach to service provision may be beneficial, possibly improving quality of life, as well as psychosocial and physical health-related outcomes among HIV-affected youth and their caregivers, particularly HIV-positive parents. PMID:20214482

  9. Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

    PubMed

    Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G

    2016-07-01

    Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

  10. Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

    PubMed

    Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G

    2016-07-01

    Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865

  11. Variation in Socio-Economic Burden for Caring of Children with Autism Spectrum Disorder in Oman: Caregiver Perspectives

    ERIC Educational Resources Information Center

    Al-Farsi, Yahya M.; Waly, Mostafa I.; Al-Sharbati, Marwan M.; Al-Shafaee, Mohamed; Al-Farsi, Omar; Al-Fahdi, Samiya; Ouhtit, Allal; Al-Khaduri, Maha; Al-Adawi, Samir

    2013-01-01

    A cross-sectional study was conducted to investigate whether caregiver's variations in socioeconomic status (SES) has direct bearing on challenges of nurturing children with autism spectrum disorder (ASD) in Oman. A cadre of caregivers (n = 150) from two types of SES (low-income and middle-high income) were compared based on four domains: (1)…

  12. Effects of an Automated Telephone Support System on Caregiver Burden and Anxiety: Findings from the REACH for TLC Intervention Study

    ERIC Educational Resources Information Center

    Mahoney, Diane Feeney; Tarlow, Barbara J.; Jones, Richard N.

    2003-01-01

    Purpose: We determine the main outcome effects of a 12-month computer-mediated automated interactive voice response (IVR) intervention designed to assist family caregivers managing persons with disruptive behaviors related to Alzheimer's disease (AD). Design and Methods: We conducted a randomized controlled study of 100 caregivers, 51 in the usual…

  13. [The dementia patient caregiver].

    PubMed

    Bagnati, Pablo M

    2010-01-01

    Dementia results in an important economic, social and personal burden. To care for a patient with dementia can be a trascendent learning experience. At the same time, the caregiver's role can become strenuous physical and mental work. This article reviews the importance of assessing the caregiver from the moment of diagnostic work up, the stages the caregiver goes through in the disease evolution, and the "Caregiver syndrome" where the caregiver can become the "second victim" of dementia.

  14. Caregiver Objective Burden and Assessments of Patient-Centered, Family-Focused Care for Frail Elderly Veterans

    ERIC Educational Resources Information Center

    Rose, Julia Hannum; Bowman, Karen F.; O'Toole, Elizabeth E.; Abbott, Katherine; Love, Thomas E.; Thomas, Charles; Dawson, Neal V.

    2007-01-01

    Purpose: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to…

  15. Measuring the burden of pediatric burn injury for parents and caregivers: informed burn center staff can help to lighten the load.

    PubMed

    Rimmer, Ruth Brubaker; Bay, R Curt; Alam, Now Bahar; Sadler, Ian J; Richey, Karen J; Foster, Kevin N; Caruso, Daniel M; Rosenberg, David

    2015-01-01

    This study sought to identify which commonly experienced burn-related issues parents/caregivers of burn-injured youth deemed most stressful, difficult, and disruptive during their child's initial acute burn care hospitalization, and following the child's discharge. Parents completed an 11-item survey, asking them to rate the difficulty of items regarding their child's burn injury. The scale was created by burn doctors, nurses, and psychologists with an average of 10.5 (SD ± 4.8) years of experience. Items selected were among common parental problems reported in the burn literature. Respondents included 69 parents/caregivers of previously hospitalized, burn-injured youth. The majority were mothers, n = 51 (74%), and n = 34 (49%) were Caucasian. The most represented age group was 37 to 45 years, n = 31 (45%). Children were on average, 6.04 years out from their initial injury. All parents reported their child's pain as the most difficult part of the injury, n = 69 (100%). The second most common issue was the child's first hospital stay. The other two items found to be "very hard" or "pretty hard" were the time spent away from their other children, and feelings of hopelessness in being unable to fix everything for their child. In this study, key parental problems occurred during the child's initial hospitalization. Burn staff cannot alleviate all problems, however, staff education regarding distressing problems faced by parents, as well as possible solutions, can be made available.

  16. What else should we know about experiencing COPD? A narrative review in search of patients’ psychological burden alleviation

    PubMed Central

    Rzadkiewicz, Marta; Bråtas, Ola; Espnes, Geir Arild

    2016-01-01

    The present paper is a narrative review focusing on the psychological impact, identification of protective factors, and interventions minimizing the psychological burdens of chronic obstructive pulmonary disease (COPD). The research reviews studies on neurocognitive functions, personality, emotional problems, and health-related quality of life. This is done with regard to resources as well as activities enabling or enhancing a patient’s adaptation. PubMed and PsychArticles databases were searched for relevant medical (eg, CODP, emphysema), psychopathology (eg, depression), and psychological (eg, personality) keywords, followed by hand search. After application of the inclusion and exclusion criteria, the search resulted in 82 articles and book chapters. The choice was based on evidence accepted by evidence-based medicine, although at different levels of strength. Psychological experiencing of COPD appears to be very unequally represented with scientific research on emotional problems and functioning decrease significantly outnumbering those addressing resources or effective interventions. As our initial literature search called for an urgent need for further exploration, we have carefully pointed out numerous areas where the knowledge on how to protect or restore psychological well-being among COPD patients should be broadened.

  17. What else should we know about experiencing COPD? A narrative review in search of patients’ psychological burden alleviation

    PubMed Central

    Rzadkiewicz, Marta; Bråtas, Ola; Espnes, Geir Arild

    2016-01-01

    The present paper is a narrative review focusing on the psychological impact, identification of protective factors, and interventions minimizing the psychological burdens of chronic obstructive pulmonary disease (COPD). The research reviews studies on neurocognitive functions, personality, emotional problems, and health-related quality of life. This is done with regard to resources as well as activities enabling or enhancing a patient’s adaptation. PubMed and PsychArticles databases were searched for relevant medical (eg, CODP, emphysema), psychopathology (eg, depression), and psychological (eg, personality) keywords, followed by hand search. After application of the inclusion and exclusion criteria, the search resulted in 82 articles and book chapters. The choice was based on evidence accepted by evidence-based medicine, although at different levels of strength. Psychological experiencing of COPD appears to be very unequally represented with scientific research on emotional problems and functioning decrease significantly outnumbering those addressing resources or effective interventions. As our initial literature search called for an urgent need for further exploration, we have carefully pointed out numerous areas where the knowledge on how to protect or restore psychological well-being among COPD patients should be broadened. PMID:27695316

  18. Caregiving: Predicting At-Risk Status

    ERIC Educational Resources Information Center

    Chappell, Neena L.; Dujela, Carren

    2008-01-01

    Despite the focus on burden of caregiving in gerontological research, studies have shown that few caregivers are overly burdened. This article compares predictors of role-specific burden and two quality-of-life measures among caregivers experiencing heavy care demands to assess role-impact on each. The study included 92 community-based caregivers…

  19. Assessing Impact on Family Caregivers to Alzheimer's Disease Patients.

    ERIC Educational Resources Information Center

    Talkington-Boyer, Shannon; Snyder, Douglas K.

    1994-01-01

    Examined impact of caregiving among 110 caregivers to aging family member with Alzheimer's disease. Family caregivers' appraisals along dimensions of subjective burden, negative impact, caregiving satisfaction, and caregiver mastery were correlated with extent of memory and behavior problems of patient and caregivers' coping style, locus of…

  20. Depression and socio-economical burden are more common in primary caregivers of patients who are not aware of their cancer: TURQUOISE Study by the Palliative Care Working Committee of the Turkish Oncology Group (TOG).

    PubMed

    Tanriverdi, O; Yavuzsen, T; Turhal, S; Kilic, D; Yalcin, S; Ozkan, A; Uzunoglu, S; Uysal-Sonmez, O; Akman, T; Aktas, B; Ulger, S; Babacan, T; Komurcu, S; Yaren, A; Cay-Senler, F

    2016-05-01

    In this study, we aimed to determine the personal, social and economic burden and the frequency of depression, as well as in caregivers of cancer patients who are being treated with chemotherapy in Turkey. The study is designed as a cross-sectional survey study using a 5-point Likert-type response scale, and the last part of the questionnaire includes the Beck Depression Inventory. The depression rate was found to be 64% (n = 476) among all subjects (n = 968), with 91% of those with depression demonstrating signs of mild depression. In this study, a significant difference was found between the presence of depression and age (young), sex (female), educational level (high), economic status (low), financial loss during treatment, patient's lack of knowledge about his/her diagnosis, metastatic disease and short survival time. In addition, 64% of all subjects had concerns of getting cancer, and 44% of all subjects had feelings of anger/rage against other people. In a multivariate regression analysis, the patient's lack of knowledge of the diagnosis was the independent risk factor. In conclusion, depression incidence and burden rate increased among cancer caregivers, and care burden was highly associated with depression. Accordingly, approaches to reducing the psycho-social effects of cancer should focus intensively on both the patients and their caregivers in Turkey. PMID:25828949

  1. Depression and socio-economical burden are more common in primary caregivers of patients who are not aware of their cancer: TURQUOISE Study by the Palliative Care Working Committee of the Turkish Oncology Group (TOG).

    PubMed

    Tanriverdi, O; Yavuzsen, T; Turhal, S; Kilic, D; Yalcin, S; Ozkan, A; Uzunoglu, S; Uysal-Sonmez, O; Akman, T; Aktas, B; Ulger, S; Babacan, T; Komurcu, S; Yaren, A; Cay-Senler, F

    2016-05-01

    In this study, we aimed to determine the personal, social and economic burden and the frequency of depression, as well as in caregivers of cancer patients who are being treated with chemotherapy in Turkey. The study is designed as a cross-sectional survey study using a 5-point Likert-type response scale, and the last part of the questionnaire includes the Beck Depression Inventory. The depression rate was found to be 64% (n = 476) among all subjects (n = 968), with 91% of those with depression demonstrating signs of mild depression. In this study, a significant difference was found between the presence of depression and age (young), sex (female), educational level (high), economic status (low), financial loss during treatment, patient's lack of knowledge about his/her diagnosis, metastatic disease and short survival time. In addition, 64% of all subjects had concerns of getting cancer, and 44% of all subjects had feelings of anger/rage against other people. In a multivariate regression analysis, the patient's lack of knowledge of the diagnosis was the independent risk factor. In conclusion, depression incidence and burden rate increased among cancer caregivers, and care burden was highly associated with depression. Accordingly, approaches to reducing the psycho-social effects of cancer should focus intensively on both the patients and their caregivers in Turkey.

  2. Caregiver Well-Being

    PubMed Central

    Dujela, Carren; Smith, André

    2015-01-01

    We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem. PMID:25651586

  3. The cancer caregiving experience of caregivers of Mexican ancestry.

    PubMed

    Juarez, Gloria; Branin, Joan J; Rosales, Monica

    2014-01-01

    The act of providing care may be the same in all ethnic groups, but the way caregiving is defined by family members is influenced by cultural values and beliefs. This study describes the caregiving experience and challenges of caregivers of Mexican ancestry. Qualitative interviews of 20 family caregivers and thematic analysis of transcribed audiotapes identified four themes that characterized their caregiving experience. These themes include an emphasis on family values, a strong commitment to care, difficulties dealing with everyday life realities, and a reliance on spirituality, all of which added to the meaningfulness and burden of caregiving. Further investigation within a cultural context is warranted in the development of interventions and programs to better assist caregivers in coping with the challenges of providing cancer care.

  4. Caregivers--Who Copes How?

    ERIC Educational Resources Information Center

    Chappell, Neena L.; Dujela, Carren

    2009-01-01

    Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies…

  5. Caregiver Depression

    MedlinePlus

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  6. The Effects of Caregiving on the Family.

    ERIC Educational Resources Information Center

    Bailey, Eric J.; Young, Rosalie F.

    The topic of caregiving was investigated with respect to the burden experienced by primary caregivers of older persons who had recently suffered a myocardial infarction. Structured interviews were completed with 104 primary care providers who were part of a larger National Institute on Aging funded survey. The caregivers were of both sexes and…

  7. Caregiver Assessment

    ERIC Educational Resources Information Center

    Feinberg, Lynn

    2008-01-01

    Assessment is a critical step in determining appropriate support services. This article discusses "caregiver assessment," a systematic process of gathering information to describe a caregiving situation. Caregiver assessment identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the…

  8. Health Update: Health Concerns for Caregivers.

    ERIC Educational Resources Information Center

    Aronson, Susan S.

    1987-01-01

    Discusses job-related health problems, such as infectious diseases and job stress, that are of concern to child caregivers in child care settings. Ways that these problems can be alleviated and/or medically treated are also discussed. (BB)

  9. Caring for the caregiver.

    PubMed

    Levy, Mitchell M

    2004-07-01

    There are certainly many coping behaviors that may assist ICU caregivers in the process of caring for themselves. Staff support groups,regular interdisciplinary meetings to discuss difficult cases,and bringing trained personnel into the intensive care unit (ICU)environment to offer staff training in communication and conflict resolution skills have been suggested as methods for alleviating caregiver stress. Combining these as well as other tools with a deeper look at the caregiver-patient relationship are important building blocks for creating a sane, healthy environment in the ICU. Over the next years, as the population ages, and as technologic advances continue, the critical care units will play an even more prominent role in health care. Given the threat posed by the severe nursing shortage, it becomes apparent that, to prepare for this increased need for critical care services, efforts must be directed to identify the sources of distress for ICU caregivers and develop focused training programs that alleviate the inevitably strains and pressures that arise in the process of compassionate caring for the critically ill. PMID:15183218

  10. Caregiver Stress

    MedlinePlus

    ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Pew Research ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Return to ...

  11. Caregiving Statistics

    MedlinePlus

    ... more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental ... caregiving families. In every state and DC the poverty rate is higher among families with members with ...

  12. Family caregiving for adults with schizophrenia and diabetes mellitus.

    PubMed

    El-Mallakh, Peggy; Yates, Brittany Evans; Adkins, Sarah

    2013-08-01

    Diabetes mellitus (DM) is common among those with schizophrenia, but little is known about family members' roles in the care of relatives who have both schizophrenia and DM. The purpose of this descriptive correlational study was to examine DM knowledge and caregiver burden among 27 family caregivers of people with schizophrenia and DM. Findings indicate that DM knowledge was low. Objective caregiver burden was highest for providing assistance with daily living activities. Subjective burden was highest for preventing the care recipient from keeping people awake at night and dealing with the care recipient's non-adherence to DM care. Family caregivers are in need of education and support in the caregiving role.

  13. Utility of the Life Course Perspective in Research With Mexican American Caregivers of Older Adults

    PubMed Central

    Evans, Bronwynne C.; Crogan, Neva; FNGNA; Belyea, Michael; Coon, David

    2013-01-01

    Research on caregiving of elders in Mexican American families is urgently needed. We know little about family caregivers, family transitions in relation to the caregiving role, reciprocal impact of caregivers and care recipients on one another, adaptive strategies, positive benefits of caregiving (caregiver gain), specific caregiving burdens, or supportive interventions for family caregiving. Theory derivation using the concepts and structure of life course perspective provides a way to fill the knowledge gaps concerning Mexican American caregiving families, taking into account their ethnic status as an important Hispanic subgroup and the unique cultural and contextual factors that mark their caregiving experiences. PMID:18845694

  14. The physical costs of AIDS caregiving.

    PubMed

    Leblanc, A J; London, A S; Aneshensel, C S

    1997-09-01

    Informal care has become an increasingly important element in the delivery of health and social services to people living with HIV disease or AIDS (PWAs), yet the provision of such care does not come without costs to the caregiver. Instead, caregiving imposes burdens that may compromise caregiver health. Common ailments among AIDS caregivers were examined with two waves of data from a diverse sample of informal care providers in Los Angeles and San Francisco (N = 642). Symptoms of poor physical health are markedly present among AIDS caregivers and are significantly associated with care-related demands and stressors. This stress and health relationship varies significantly between caregivers who are HIV seropositive and those who are seronegative. Care-related effects are more direct among seronegative caregivers who are perhaps less overwhelmed with the maintenance of their own health. For all caregivers studied, level of depression and prior physical health are strong correlates of these physical ailments. Implications of these results are discussed.

  15. Support Group Counseling for Caregivers of Alzheimer's Disease Patients.

    ERIC Educational Resources Information Center

    Hinkle, J. Scott

    1991-01-01

    Describes Alzheimer's disease and the burdens that caregivers encounter in dealing with Alzheimer's patients. Presents information concerning support group counseling for caregivers, their particular needs, and special family issues. Emphasizes that relationships between caregivers and support group counselors are crucial to successful…

  16. The burden of Alzheimer's disease.

    PubMed

    Burns, Alistair

    2000-07-01

    Alzheimer's disease (AD) imposes a severe burden upon patients and their carers. In particular, family carers of AD patients face extreme hardship and distress that represents a major but often hidden burden on healthcare systems. Carers often experience clinically significant alterations in physical and mental health, particularly depression. A number of individual features of the dementia syndrome that are known to be particularly burdensome to carers include the degree of cognitive impairment, amount of help required with activities of daily living, personality changes and the presence of psychiatric symptoms and behavioural disturbances. The neuropsychiatric features of AD patients can adversely impact the relationship between the patient and caregiver generating feelings of strain, burden and social isolation. Individual characteristics of the caregiver including personality, gender, degree of formal and informal support and physical and mental health, as well as attributional style ('coping style') and expressed emotion (critical or hostile attitudes), also dictate carer burden. As informal caregivers play such a crucial role in the care of AD patients, appropriate management strategies that incorporate interventions which address the specific burdens of the individual caregiver are essential. Reducing the burden of care can be achieved by the combination of a number of individual and general measures, including education, respite and emotion-focused interventions. These measures, accompanied by non-pharmacological strategies, are extremely important in the total care of the AD patient, with the emphasis on maintaining people in the community as long as possible.

  17. Stigma associated with Ghanaian caregivers of AIDS patients.

    PubMed

    Mwinituo, Prudence P; Mill, Judy E

    2006-06-01

    This study explores the experiences of informal caregivers of AIDS patients in Accra, the capital city of Ghana. Fifteen interviews were completed in 2002 with 11 informal caregivers, including wives, mothers, boyfriends, daughters, sons and brothers of AIDS patients. Three major themes emerge in the analysis of the interviews with caregivers: stigma, caregiver burden, and caregiver commitment. In this article, the authors focus on the theme of stigma by documenting its presence and highlighting its impact on caregiving activities. Caregivers go to great effort to not only "hide" their patients but also their care giving activities, resulting in the social isolation of both patients and their caregivers. Many caregivers live in secrecy, not sharing their family member's diagnosis with extended family members. As a result, they receive limited support from the extended family. Stigma results in negative attitudes of neighbors, relatives, and health care workers toward caregivers and their patients.

  18. The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

    PubMed Central

    Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

    2009-01-01

    The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

  19. Effects of the situational context and interactional process on the quality of family caregiving.

    PubMed

    Phillips, L R; Morrison, E; Steffl, B; Chae, Y M; Cromwell, S L; Russell, C K

    1995-06-01

    A staged theoretical model designed to explain the quality of elder caring by family members was tested. The model posits how the situational context, interactional process, and caregiving burden perceived by the caregiver affect the quality of elder caring. The purpose was to determine the amount of variance explained by the interactional process beyond that explained by the situational context and caregiving burden. Data were collected from 209 elder-caregiver dyads using interviews, observations, and caregiver self-reports. The strongest predictors of caregiving burden were the caregiver's stressful negative life events (situational context) and discrepancy between past and present image of elder (interactional process). The strongest predictors of quality of elder caring were the caregiver's perception of subjective burden and a monitoring role definition on the part of the caregiver (interactional process).

  20. Caregiver’s burden in pulmonary arterial hypertension: a clinical review

    PubMed Central

    Verma, Sameer; Sayal, Abhineet; Vijayan, V. K.; Rizvi, Syed M.; Talwar, Arunabh

    2016-01-01

    Caregiver’s burden is a multidimensional phenomenon affecting care-givers physically, emotionally and socially. It is critical to examine the burden of caregivers, because of the complex responsibility they have with their partners. There are relatively few studies that have examined factors linked with psychological burden amongst caregivers of pulmonary arterial hypertension (PAH) patients. Hence, it is pertinent to develop a good understanding of these factors and develop appropriate management strategies, modified to assist PAH caregivers. PMID:27807515

  1. Medical management of frontotemporal dementias: the importance of the caregiver in symptom assessment and guidance of treatment strategies.

    PubMed

    Jicha, Gregory A

    2011-11-01

    There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, caregivers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is "hit or miss" and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD.

  2. Medical Management of Frontotemporal Dementias: The Importance of the Caregiver in Symptom Assessment and Guidance of Treatment Strategies

    PubMed Central

    2011-01-01

    There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, care-givers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is “hit or miss” and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD. PMID:21647712

  3. Project CARE: A Randomized Controlled Trial of a Behavioral Intervention Group for Alzheimer's Disease Caregivers

    ERIC Educational Resources Information Center

    Gonyea, Judith G.; O'Connor, Maureen K.; Boyle, Patricia A.

    2006-01-01

    Purpose: The neuropsychiatric symptoms associated with Alzheimer's disease are a major contributor to caregiver distress and burden. Despite recent efforts to teach caregivers skills to manage neuropsychiatric symptoms and reduce burden, there continues to be limited evidence that these strategies have helped caregivers of individuals with…

  4. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving.

    PubMed

    Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen

    2016-07-01

    Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society.

  5. Mammography screening behavior in older women caregivers.

    PubMed

    Chang, B L; Sarna, L; Carter, P A

    2001-01-01

    The purposes of this study are to explore older caregivers' mammography participation and the facilitators and barriers to mammography screening. Of the 52 older female caregivers with a mean age of 65 years (range 50-90) interviewed by telephone, 80.8% had had a mammogram within 12 months. Significant facilitators included health care provider recommendation and beliefs in the efficacy of treatment. Significant barriers included health care providers' failure to recommend mammograms, caregiver procrastination, fear of pain, and lack of symptoms. Caregivers with higher burden reported less frequent self- and provider-conducted breast examinations.

  6. Caregiving is not a disease: moving from reactive to proactive supports for family caregivers across the healthcare system.

    PubMed

    Giosa, Justine; Holyoke, Paul

    2014-01-01

    Saint Elizabeth partnered directly with family caregivers in a study to develop promising practices and indicators of effective caregiver education and support. Researchers heard that caregivers want and need proactive supports to help them thrive and equip them with tools and resources to protect their capacity to care and prevent distress; however, the current system of support is heavily focused on a reactive, medical approach to managing and treating caregiver "burden." Saint Elizabeth is dedicated to promoting a philosophical shift in thinking about caregiver education and support and is actively re-designing support services to reflect what caregivers say they need. PMID:25591608

  7. Psychometric Properties of the Caregiver Strain Questionnaire (CGSQ) among Caregivers of Children with Autism

    ERIC Educational Resources Information Center

    Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Tworek, Cindy; Patrick, Julie H.; Becker-Cottrill, Barbara

    2012-01-01

    The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…

  8. Psychosocial condition of family caregivers of patients with chronic obstructive pulmonary disease in Hong Kong.

    PubMed

    Lee, E; Lum, C M; Xiang, Y T; Ungvari, G S; Tang, W K

    2010-12-01

    OBJECTIVES. Chronic obstructive pulmonary disease is associated with physical and psychological burdens. Although there is research about health-related quality of life (HRQOL) of such patients, less is known about the psychosocial condition of their family caregivers. The objectives of this study were to examine the HRQOL and the burden of chronic obstructive pulmonary disease patient caregivers, and to identify associated relevant factors. METHODS. A total of 81 eligible caregivers completed a caregiver survey on HRQOL (Short Form-36 Questionnaire), caregiving burden (Cumulative Illness Rating Scale, CIRS) and other biopsychosocial factors. Descriptive statistics, correlations, and multiple linear regression models were used to analyse data. RESULTS. The caregiver's Mental Component Summary measure of the Short Form-36 was associated with each caregiver's total CIRS scores, the anxiety subscale of the Hospital Anxiety and Depression Scale, and the Lubben Social Network Scale. The caregiver's Physical Component Summary measure was associated with the patient's disability allowance, the caregiver's total CIRS score, and the Barthel Index score. Caregivers' Caregiving Burden Scale scores were associated with their Geriatric Depression Scale total score and the need to take care of other family members. CONCLUSIONS. This study demonstrates that depressive and anxiety symptoms are associated with caregivers' burden and HRQOL. Further studies on evaluating interventions on caregivers' HRQOL and burden should take mood symptoms into consideration. PMID:22348927

  9. Rural Stroke Caregivers: A Qualitative Study of the Positive and Negative Response to the Caregiver Role.

    PubMed

    Johnson, P D

    1998-01-01

    Caregivers are often referred to as the "hidden patients." Rarely has caregiving research focused on the positive aspects of caregiving. The purpose of this study was to investigate the lived experiences of caregivers of stroke survivors who have been in the caregiver role for at least 6 months poststroke. The conceptual framework was based on a combination of Lazarus' stress and coping theory and Weiner's attribution theory. A qualitative cross-sectional design was employed. It involved a sample of 10 caregivers from a rural county in Wyoming. A total of 24 categories were identified and five themes emerged: (1) a sense of loyalty; (2) acceptance; (3) a sense of "feeling good"; (4) satisfaction is associated with helping others; and (5) burden is associated with lifestyle change. Participants in this study reported several positive outcomes as well as some negative outcomes in regard to their role as caregivers.

  10. Coping with Caregiving: Take Care of Yourself While Caring for Others

    MedlinePlus

    ... can also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent ... of online caregiving resources. References: The Burden of Health Care Costs for Patients with Dementia in the Last 5 ...

  11. Dignity Therapy for People with Motor Neuron Disease and Their Family Caregivers: A Feasibility Study

    PubMed Central

    Chochinov, Harvey M.; Kristjanson, Linda J.

    2015-01-01

    Abstract Background: There are calls to explore psychological interventions to reduce distress in patients with motor neuron disease (MND) and their family caregivers. Dignity therapy is a short-term psychotherapy intervention shown to alleviate distress for people with life-limiting illnesses. Objectives: To assess the acceptability, feasibility, and effectiveness of dignity therapy to reduce distress in people with MND and their family caregivers. Methods: The study used a repeated-measures design pre- and post-intervention. Acceptability and feasibility were assessed using participants' ratings of the helpfulness of the intervention across several domains and time and resources required. Effectiveness measures for patients included: dignity-related distress, hopefulness, and spiritual well-being; and those for family caregivers included burden, hopefulness, anxiety, and depression. Results: Twenty-seven patients and 18 family caregivers completed the intervention. Dignity therapy was well accepted, including those patients who required assisted communication devices. The feasibility may be limited in small or not well-resourced services. There were no significant differences in all outcome measures for both groups. However, the high satisfaction and endorsement of dignity therapy by patients suggests it has influenced various important aspects of end-of-life experience. Family caregivers overwhelmingly agreed that the dignity therapy document is and will continue to be a source of comfort to them and they would recommend dignity therapy to others in the same situation. Conclusions: This is the first dignity therapy study to focus on MND and on home-based caregiving. Results established the importance of narrative and generativity for patients with MND and may open the door for other neurodegenerative conditions. PMID:25314244

  12. Educational Support Group in Changing Caregivers' Psychological Elder Abuse Behavior toward Caring for Institutionalized Elders

    ERIC Educational Resources Information Center

    Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti

    2009-01-01

    Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…

  13. Personality Type as a Determinant of Caregiver Distress: Preliminary Findings Using the Weinberger Assessment Inventory.

    ERIC Educational Resources Information Center

    Rose, Jonathon M.; And Others

    This study explored personality characteristics of female help-seeking caregivers. Female caregivers (N=45) of elderly demented relatives were actively recruited through mass media and special interest groups to participate in a psychoeducational class to alleviate the frustrations of caregiving and increase life satisfaction. The Weinberger…

  14. Objective and subjective burden in relatives of patients with schizophrenia and its influence on care relationships in Chile.

    PubMed

    Caqueo-Urízar, Alejandra; Urzúa, Alfonso; Jamett, Patricio Rojas; Irarrazaval, Matias

    2016-03-30

    This study examined the burden on family members of patients with schizophrenia in a Chilean community. Sixty-five caregivers underwent the Subjective and Objective Family Burden Interview. The results showed moderate to high levels of subjective burden and low levels of support from others in providing care. Burden and containment of disturbed behaviour were correlated with worse relationships between patients and caregivers, with the latter spending less time working outside the home. The assessed sample showed a similar pattern of burden to that of caregivers from developed countries; however, the extent of the burden tended to be higher in Chilean caregivers. PMID:26809366

  15. Objective and subjective burden in relatives of patients with schizophrenia and its influence on care relationships in Chile.

    PubMed

    Caqueo-Urízar, Alejandra; Urzúa, Alfonso; Jamett, Patricio Rojas; Irarrazaval, Matias

    2016-03-30

    This study examined the burden on family members of patients with schizophrenia in a Chilean community. Sixty-five caregivers underwent the Subjective and Objective Family Burden Interview. The results showed moderate to high levels of subjective burden and low levels of support from others in providing care. Burden and containment of disturbed behaviour were correlated with worse relationships between patients and caregivers, with the latter spending less time working outside the home. The assessed sample showed a similar pattern of burden to that of caregivers from developed countries; however, the extent of the burden tended to be higher in Chilean caregivers.

  16. Physical activity in caregivers: What are the psychological benefits?

    PubMed

    Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola

    2014-01-01

    Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small sample sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers. PMID:24798641

  17. Family Caregivers.

    ERIC Educational Resources Information Center

    Frazier, Billie H.

    This document contains a brief bibliography of peer-reviewed literature, with abstracts, on family caregiving. It is one of 12 bibliographies on aging prepared by the National Agricultural Library for its "Pathfinders" series of publications. Topics covered by the other 11 bibliographies include aging parents, adult children, dementia and…

  18. What informal caregivers actually do: the caregiving skills of partners of men with AIDS.

    PubMed

    Wrubel, J; Folkman, S

    1997-12-01

    This study draws on the narrative accounts of caregiving events provided by 100 HIV-negative and HIV-positive partners of men with AIDS during their partners' illness. The narratives contain rich detail about the wide range of skills that these men developed over the course of their caregiving. These skills, which go beyond the kinds of assistance with daily activities that normally comprise caregiving assessments, pertain to the provision of emotional support, hands-on care, clinical care, high tech nursing and health care advocacy. Because these narratives depict caregiving in its naturally occurring context, it is also possible to describe ways in which the context of caregiving, including the partners' relationship, the clinical course of the illness and changes in the meaning of the illness, influence the development of these caregiving skills. Finally, the narratives provide insight not only into the burdens of care, but also into its often overlooked positive aspects.

  19. Both patient and caregiver gender impact depressive symptoms among organ transplant caregivers: who is at risk and why?

    PubMed

    Holtzman, Susan; Abbey, Susan E; Singer, Lianne G; Ross, Heather J; Stewart, Donna E

    2011-07-01

    This study investigated the impact of patient and caregiver gender on caregiver depressive symptoms. Caregivers' use of relationship-focused coping and dimensions of caregiver burden were examined as potential mediators of gender differences in depressive symptoms. Ninety-three organ transplant candidates and their caregivers completed written questionnaires (N = 186). Females providing care to male patients reported significantly higher depressive symptoms than the other caregivers in our sample. Multiple mediation analyses revealed that less support from family members and a greater negative health impact of caregiving helped explain these gender differences. Women caring for men were also perceived as more overprotective, but this did not explain gender differences in depression. Results highlight the benefits of a contextual, dyadic approach to studying caregiver distress. PMID:21421644

  20. Development and testing of a measure of perceived caregiver rewards in adults.

    PubMed

    Picot, S J; Youngblut, J; Zeller, R

    1997-01-01

    Assessment of the rewards of caregiving is pertinent to a holistic view of the caregiving experience and design of health promotion interventions for caregivers. Few measures of caregiver positive appraisals exist. This paper describes the development and pilot testing of the Picot Caregiver Rewards Scale (PCRS) for adult caregivers. Derived from the choice and social exchange theory, caregiver interviews, and literature, 25 items compose the scale. Psychometric testings of the PCRS were conducted in a nonrandom sample of 83 Black female caregivers and a random sample of 256 Black and White female and male caregivers. Alphas of .83 and .88 demonstrated acceptable internal consistency of the revised 16-item PCRS. Construct validity was demonstrated by support of hypothesized relationships with caregiving demands, palliative coping, depression, and caregiver burden, as well as confirmatory factor analysis. Further psychometric study of the PCRS is recommended.

  1. Health-related quality of life for caregivers of patients with Alzheimer disease.

    PubMed

    Markowitz, Jeffrey S; Gutterman, Elane M; Sadik, Kay; Papadopoulos, George

    2003-01-01

    We investigated the relationship of caregivers' health-related quality of life (HRQOL) to the burden of caring for patients with Alzheimer disease (AD) and resource utilization. Caregiver HRQOL was assessed using the SF-12 Mental and Physical Summary scores. Compared with a normative, age-adjusted sample, the 2477 caregivers had lower mental and physical scores (for the latter, only those <54 years of age). Increased caregiver mental functioning was associated with caregiver support and perceived quality of patient medical care, fewer hours of caregiving, and fewer patient behavioral symptoms. The burden of caregiving has substantial effects on HRQOL. Interventions that improve AD status and reduce caregiving hours have the potential to improve caregivers' HRQOL.

  2. Appraisal and Coping: Moderators or Mediators of Stress in Alzheimer's Disease Caregivers?

    ERIC Educational Resources Information Center

    Morano, Carmen Louis

    2003-01-01

    This study focused on one question: Do caregiver responses--emotion-focused coping, problem-focused coping, appraisal of burden, and appraisal of satisfaction--mediate or moderate the effects of caregiving stress on psychological well-being? Findings indicate that development of interventions that focus on how caregivers appraise their situation,…

  3. Impact of a multicomponent support services program on informal caregivers of adults aging with disabilities.

    PubMed

    LaVela, Sherri L; Johnson, Brenda W; Miskevics, Scott; Weaver, Frances M

    2012-01-01

    A multicomponent support services program was implemented for veterans aging with disabilities and their informal caregivers (n = 42 dyads). Caregiver outcomes (satisfaction, physical and mental health status, burden, and benefits) were evaluated before and after program use. Caregivers reported significant improvements in mental health post-program. Caregivers who provided care to individuals with impaired physical health experienced meaningful improvements in burden after the support services were rendered. Supporting caregiver health status through such programs is vital to preserve noninstitutional long-term care for persons aging with disabilities, particularly when care is provided over many years to an individual with physical impairments.

  4. Ethnic Differences in Caregiver Quality of Life in Pediatric Asthma

    PubMed Central

    Everhart, Robin S.; Mitchell, Daphne Koinis; McQuaid, Elizabeth L.; Kopel, Sheryl; Seifer, Ronald; Canino, Glorisa; Fritz, Gregory

    2012-01-01

    Objective The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican and Dominican) and non-Latino White (NLW) caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity. Method Seven-hundred and eighty-seven children with asthma (7–16 years of age) and their primary caregivers participated. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures. Results Ethnic and site differences were found on total QOL scores (ΔF(1, 783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than RI Latino and NLW caregivers; RI Latino caregivers reported significantly worse QOL scores than NLW caregivers. In RI Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with 1 or more ED visits. Conclusion Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than NLW caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader, contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma. PMID:23027132

  5. Cancer patients caregivers comfort.

    PubMed

    de Araújo Lamino, Daniela; Turrini, Ruth Natalia Teresa; Kolcaba, Katharine

    2014-04-01

    Cross-sectional study, carried out at the outpatient clinic of an oncology hospital. Data were collected from 88 caregivers of cancer patients using the Caregiver General Comfort Questionnaire (GCQ) to assess the caregivers' comfort. The caregivers' GCQ score mean was 203.9; better comfort scores was associated with age, care time and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients' physical and environmental comfort and to caregivers' spirituality. 203.9; better comfort scores were associated with age of the caregiver and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients' physical and environmental comfort and to caregivers' spirituality. Caregivers, who didn't have a paid job or leisure's activities showed a worse GCQ. The GCQ scale can help to identify factors that interfere in caregivers' comfort, as well as needs that can be modified through health professionals' interventions.

  6. Work Productivity and Health of Informal Caregivers of Persons With Advanced Cancer

    PubMed Central

    Daly, Barbara J.; Douglas, Sara L.; Lipson, Amy R.

    2015-01-01

    The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. PMID:21953274

  7. The Contribution of Attachment to Burden in Adult Children of Institutionalized Parents with Dementia.

    ERIC Educational Resources Information Center

    Crispi, Esther Loring; And Others

    1997-01-01

    Studied 108 adults to investigate the impact of adult attachment to parents, perceived disease severity, and caregiving behaviors, moderated by perceived caregiving adequacy. Results indicate that attachment style and the trait aspect of attachment predicted both aspects of caregiver burden. Attachment preoccupation predicted psychologic…

  8. Factors Affecting Burden of South Koreans Providing Care to Disabled Older Family Members

    ERIC Educational Resources Information Center

    Lee, Minhong; Yoon, Eunkyung; Kropf, Nancy P.

    2007-01-01

    This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1,000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care…

  9. You Are Not Alone: PARISH NURSES BRIDGE CHALLENGES FOR FAMILY CAREGIVERS.

    PubMed

    Grebeldinger, Teresa A; Buckley, Kathleen M

    2016-01-01

    In 2015, there were 43.5 million informal, unpaid caregivers in the United States. Caregivers reported a moderate to high level of burden of care, including performing medical and nursing tasks they were not trained to do. A study of family caregiver experiences with parish/faith community nurses reveals four key ways parish nurses support caregivers and offers important implications for parish nurse preparation and practice.

  10. Cancer Family Caregivers: A New Direction for Interventions

    PubMed Central

    Bakitas, Marie

    2012-01-01

    Abstract Background Descriptive studies of cancer family caregivers demonstrate role-related psychosocial and physical burden; however, little is known about which factors contribute to or obviate burden. Systematic reviews of caregiver intervention studies demonstrate mixed results, perhaps because some caregiver needs are still unknown and not adequately addressed. The purpose of our study was to explore the lived experience of being a caregiver for an adult with lung or colon cancer, so as to guide the development of future intervention studies. Method Using phenomenologic methods, open-ended interviews were conducted at a chemotherapy clinic, New Haven, CT with 135 caregivers to adults with lung or colon cancer. Interviews were audio-recorded and transcribed. Thematic analysis was conducted with transcripts coded, reviewed, and recoded multiple times. The final 69 codes were reduced to 13 code clusters (thematic categories) distributed among 4 themes. Results Four inter-related themes emerged: 1) becoming a caregiver; 2) new and altered relationships; 3) personal responses to caregiving and 4) antecedents and social context. Caregivers describe hearing the cancer diagnosis as “life-changing”. The cancer creates the context for the caregiver's relationships (with the patient, self, others, and the healthcare system), and cognitive, behavioral, affective, and spiritual responses. The caregiver's antecedent experiences and social support network form the foundation for their perceptions of the diagnosis, relationships, and personal responses. Conclusion This study implicates several intervention components to be developed and tested as favorably supporting caregivers, namely, reinforcing positive aspects of caregiving, cultivating open communication, and acknowledging the prior experiences and social foundation of the caregiver's life that can be supportive or burdensome. PMID:22612407

  11. Informal caregivers of patients with COPD: Home Sweet Home?

    PubMed

    Nakken, Nienke; Janssen, Daisy J A; van den Bogaart, Esther H A; Wouters, Emiel F M; Franssen, Frits M E; Vercoulen, Jan H; Spruit, Martijn A

    2015-09-01

    The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status. PMID:26324811

  12. Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

    PubMed

    Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

    2016-06-01

    Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

  13. The societal burden of osteoporosis.

    PubMed

    Becker, David J; Kilgore, Meredith L; Morrisey, Michael A

    2010-06-01

    Osteoporosis currently affects 10 million Americans and is responsible for more than 1.5 million fractures annually. The financial burden of osteoporosis is substantial, with annual direct medical costs estimated at 17 to 20 billion dollars. Most of these costs are related to the acute and rehabilitative care following osteoporotic fractures, particularly hip fractures. The societal burden of osteoporosis includes these direct medical costs and the monetary (eg, caregiver time) and nonmonetary costs of poor health. The aging of the US population is expected to increase the prevalence of osteoporosis and the number of osteoporotic fractures. Growth of the older adult population will pose significant challenges to Medicare and Medicaid, which bear most of the cost of osteoporosis. Efforts to address the looming financial burden must focus on reducing the prevalence of osteoporosis and the incidence of costly fragility fractures. PMID:20425518

  14. Emergence of Yalom's therapeutic factors in a peer-led, asynchronous, online support group for family caregivers.

    PubMed

    Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R

    2014-01-01

    Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants' responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group. PMID:24350748

  15. Emergence of Yalom's therapeutic factors in a peer-led, asynchronous, online support group for family caregivers.

    PubMed

    Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R

    2014-01-01

    Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants' responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group.

  16. Caregivers’ burden in patients with COPD

    PubMed Central

    Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro

    2015-01-01

    Objective Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. Methods We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. Results A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. Conclusion The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions. PMID:25709429

  17. Stress of AIDS caregiving: a preliminary overview of the issues.

    PubMed

    Pearlin, L I; Semple, S; Turner, H

    1988-01-01

    This paper describes the stressors experienced by lovers and friends who were caregivers to AIDS patients and the social supports and coping strategies they drew on in efforts to mediate stress. From exploratory, intensive interviews with San Francisco men who provided care in their homes or those of the patients, three types of stressor were identified. One involves exigencies within the caregiver role itself, such as the demands and burdens encountered in housekeeping and nursing activities and in the management of financial and legal affairs. A second type of stressor involves the uncertainties caregivers experience concerning their own future, uncertainties that arise from the fact that homosexual caregivers are often exposed to the same set of health risk factors as the patients. Third, being a caregiver can create stressful problems in other roles. Thus, the demands of caregiving can disrupt multiple areas of life--occupational, economic, and social. Once disrupted, these become independent sources of stress. Formal and informal support systems appear to be important resources in sustaining caregivers and allowing them to continue in this role. In addition to support systems, a variety of coping strategies that may also help caregivers to sustain themselves have been identified. These strategies fall into three classes: those that function to minimize the physical and management demands of caregiving; cognitive and perceptual devices that reduce the level of threat the situation holds for the caregiver; and behaviors and practices that keep tensions and anxieties within manageable bounds.

  18. Interpersonal Effects of Suffering in Older Adult Caregiving Relationships

    PubMed Central

    Monin, Joan K.; Schulz, Richard

    2009-01-01

    Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, we first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, we propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. We then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, we provide directions for future research to deepen our understanding of interpersonal phenomena among older adults, and we discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients. PMID:19739924

  19. The experience of caregivers of people living with serious mental disorders: a study from rural Ghana

    PubMed Central

    Ae-Ngibise, Kenneth Ayuurebobi; Doku, Victor Christian Korley; Asante, Kwaku Poku; Owusu-Agyei, Seth

    2015-01-01

    Background Families and friends who give care to people with mental disorders (MDs) are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons with MDs. PMID:25967587

  20. The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

    ERIC Educational Resources Information Center

    Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia

    2008-01-01

    An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to…

  1. A trial of dementia caregiver telephone support.

    PubMed

    Martindale-Adams, Jennifer; Nichols, Linda O; Burns, Robert; Graney, Marshall J; Zuber, Jeffrey

    2013-12-01

    The purpose of this study was to determine if telephone support groups for dementia caregivers have an effect on bother with patient behaviours, burden, depression, and general well-being. The randomized controlled trial compared telephone support groups (15 groups of 5 or 6 caregivers) with control groups (print materials). Groups met 14 times over 1 year. The 1-hour sessions included content on education, coping skills, and support. Data were collected at baseline and at 6 and 12 months. The sample comprised 154 caregivers, 77 per arm, providing care to veterans with dementia or a veteran caregiver. Bother was found to differ significantly at baseline. There were no significant treatment effect differences between study arms. Participants anecdotally reported improvement. It was concluded that telephone support groups are an efficient way to interact with caregivers. Further research should test different models of care. Interventions that are targeted to specific needs or occur frequently may provide better support for caregivers of individuals with a worsening condition.

  2. Self-reported impact of caregiving on voluntary home-based caregivers in Mutale Municipality, South Africa

    PubMed Central

    Netshandama, Vhonani O.; Mudau, Makondelela J.

    2016-01-01

    Background The establishment of home-based care (HBC) programmes in developing countries has resulted in a shift of burden from hospitals to communities where palliative care is provided by voluntary home-based caregivers. Aim The study investigated the impact of caregiving on voluntary home-based caregivers. Setting The study was conducted at HBC organisations located in Mutale Municipality of Limpopo Province, South Africa. Methods A quantitative cross-sectional descriptive survey design was applied to investigate the impact of caregiving on voluntary home-based caregivers. The sample was comprised of (N = 190) home-based caregivers. Home-based caregivers provide care to people in need of care in their homes, such as orphans, the elderly and those suffering from chronic illnesses such as tuberculosis, HIV and/or AIDS, cancer and stroke. Self-administered questionnaires were used to collect data which were analysed descriptively using the Statistical Package for the Social Sciences software, Version 20. Results The results showed that 101 (53.2%) participants were worried about their financial security because they were not registered as workers, whilst 74 (39.0%) participants were always worried about getting infection from their clients because they often do not have protective equipment. Conclusion Voluntary home-based caregivers have an important role in the provision of palliative care to people in their own homes, and therefore, the negative caregiving impact on the lives of caregivers may compromise the provision of quality palliative care. PMID:27380854

  3. Caregiver Action Network

    MedlinePlus

    ... MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across ...

  4. Family Caregiver Alliance

    MedlinePlus

    ... A Complex Web: Family Caregiving and Healthcare [Editor's note: This blog was originally posted on the the Atlas of Caregiving website on June ... 2016 Taking Care of SoMEone Else November 14, 2016 Grupo ...

  5. Caregivers program. Final rule.

    PubMed

    2015-01-01

    The Department of Veterans Affairs (VA) adopts, with changes, the interim final rule concerning VA's Program of Comprehensive Assistance for Family Caregivers. VA administers this program to provide certain medical, travel, training, and financial benefits to caregivers of certain veterans and servicemembers who were seriously injured during service on or after September 11, 2001. Also addressed in this rulemaking is the Program of General Caregiver Support Services that provides support services to caregivers of veterans from all eras who are enrolled in the VA health care system. Specifically, changes in this final rule include a requirement that Veterans be notified in writing should a Family Caregiver request revocation (to no longer be a Family Caregiver), an extension of the application timeframe from 30 days to 45 days for a Family Caregiver, and a change in the stipend calculation to ensure that Primary Family Caregivers do not experience unexpected decreases in stipend amounts from year to year. PMID:25581943

  6. Family Burden of Demented and Depressed Elderly Psychiatric Inpatients.

    ERIC Educational Resources Information Center

    Liptzin, Benjamin; And Others

    1988-01-01

    Found no significant differences in burden for relatives of demented and depressed patients admitted to geriatric psychiatry inpatient unit. Although at follow-up depressed patients were more improved than demented patients, their caregivers did not experience any greater decrease in burden. Families of depressed patients may require as much…

  7. Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work.

    PubMed

    van Campen, Cretien; de Boer, Alice H; Iedema, Jurjen

    2013-03-01

    Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

  8. The Sociocultural Context of Caregiving Experiences for Vietnamese Dementia Family Caregivers

    PubMed Central

    Nguyen, Kim Hanh; Dao, To Nhu; Vu, Phuoc; Arean, Patricia; Hinton, Ladson

    2015-01-01

    The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer’s Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population. PMID:26617956

  9. Transitions in Spousal Caregiving.

    ERIC Educational Resources Information Center

    Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin

    2003-01-01

    Describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health…

  10. Caregiving and Ethnicity.

    ERIC Educational Resources Information Center

    Glicksman, Allen

    This research examined the relationship between ethnicity and the psychological status and behavior of Jewish and non-Jewish caregivers in relation to the impaired elderly. It was hypothesized that Jewish caregivers would make significantly more use of formal services than non-Jewish (usually Christian) caregivers. Two separate data sets were…

  11. Assessing the quality of life among caregivers of patients with gliomas

    PubMed Central

    Minaya Flores, Patricia; Berbis, Julie; Chinot,, Olivier; Auquier, Pascal

    2014-01-01

    Background The aim of the study was to analyze the impact of gliomas in caregivers' quality of life (QoL) and to compare this specific population to other oncology caregivers and the normative population in order to find differences and understand which aspects of QoL are more impacted. Methods The sample was composed of caregivers of patients with gliomas from the Neuro-Oncology Department of Timone University Hospital of Marseilles, France. Control caregivers were selected from different oncology departments and were matched with caregivers of patients with brain cancer on age, sex, and relationship with the patients. We used the specific CareGiver Oncology Quality of Life questionnaire (CarGOQoL) to assess the impact of cancer and its treatment on caregivers' QoL. Caregivers also completed the Short Form 36 (SF36) for comparison with the French normative sample. Results The study sample included 50 caregivers of patients with gliomas, aged 30–77 years, 28% of whom were men. When comparing specific CarGOQoL scores with those of the control caregivers, brain cancer caregivers had significantly lower scores for the burden and leisure time dimensions, with an effect size of 0.4. No significant differences between cases and controls were observed with SF36. Conclusion Caregivers of patients with gliomas showed increased burden scores and lower scores for the leisure time dimension. This could be explained by their unique care situation, in which patients become more limited physically and cognitively. PMID:26034632

  12. Religious Coping in Caregivers of Family Members With Dementia.

    PubMed

    Rathier, Lucille A; Davis, Jennifer Duncan; Papandonatos, George D; Grover, Christine; Tremont, Geoffrey

    2015-12-01

    The degree of depression experienced by caregivers of individuals with dementia was examined in relation to religious coping strategies, religious practice, and spirituality in the framework of the stress and coping model. Caregivers of 191 persons with dementia completed the Religious Coping Scale, self-report measures of religious practices and spirituality, burden, and depression. There was no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression. Certain types of religious coping strategies had a direct effect on depression. Higher levels of religious coping working with God were associated with decreased depression, whereas higher levels of religious coping working through God were associated with increased depression. Higher burden, lower overall caregiver health rating, and worse reactions to memory and behavior problems were associated with higher levels of depression. Frequency of prayer and the importance of spirituality were weakly associated with lower levels of depression.

  13. Latino caregiver experiences with asthma health communication.

    PubMed

    Riera, Antonio; Ocasio, Agueda; Tiyyagura, Gunjan; Krumeich, Lauren; Ragins, Kyle; Thomas, Anita; Trevino, Sandra; Vaca, Federico E

    2015-01-01

    In this article, we analyze qualitative data from a purposeful sample of limited English proficiency (LEP) asthma health caregivers. We used ethnically concordant, semistructured, in-depth Spanish-language interviews and a follow-up focus group to explore issues related to communication during pediatric asthma encounters in medical settings. Inductive coding of Spanish transcripts by a bilingual research team was performed until thematic saturation was reached. Several key findings emerged. LEP caregivers encountered significant asthma burdens related to emotional stress, observed physical changes, and communication barriers. Language-discordant communication and the use of ad hoc interpreters were common. This finding is complex, and was influenced by perceptions of interpreter availability, delays in care, feelings of mistrust toward others, and individual emotional responses. Language-concordant education and suitable action plans were valued and desired. We discuss a revealing depiction of the LEP caregiver experience with asthma health communication and recommend areas for further inquiry. PMID:25185159

  14. Family-based therapy for dementia caregivers: clinical observations

    PubMed Central

    MITRANI, V. B.; CZAJA, S. J.

    2008-01-01

    Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

  15. Gender differences in caregiving among family - caregivers of people with mental illnesses

    PubMed Central

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  16. Gender differences in caregiving among family - caregivers of people with mental illnesses.

    PubMed

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-03-22

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  17. Cognitive stimulation by caregivers for people with dementia.

    PubMed

    Milders, Maarten; Bell, Stephen; Lorimer, Angus; MacEwan, Tom; McBain, Alison

    2013-01-01

    Cognitive stimulation (CS) is a psychological intervention for people with dementia aimed at maintaining cognitive functioning. CS provided by caregivers would allow long-term maintenance without greatly increasing demands on health services, but raises questions concerning treatment fidelity and acceptability, which were investigated in this study. Caregivers of home-living people with dementia were trained to provide CS activities to their relative with dementia. Recordings of intervention sessions and analysis of training manuals suggested adequate delivery of the intervention. Dyads continued with the activities after caregiver training had stopped. In addition, presentation of the activities without supervision from a health care professional had no detrimental effect on well-being in the caregiver or the person with dementia. The majority of caregivers indicated that, even though they experienced some burden from doing the activities with their relative, they themselves had also benefited from the intervention and intended to continue with some of the activities.

  18. Psychological Distress of Caregivers: The Mediator Effect of Caregiving Appraisal.

    ERIC Educational Resources Information Center

    Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.

    1998-01-01

    Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…

  19. [Night of the Alzheimer's patient: the nightmare of the caregiver via the caregivers'guides].

    PubMed

    Ostrowski, Madeleine; Mietkiewicz, Marie-Claude

    2015-06-01

    Care for Alzheimers' patients is quite a burden on the caregivers. Guides have been devoted to improve their knowledge about the disease and to help to provide the best care for the patient. A recent study on the reluctance of caregivers'spouses to seek external help, shows that none of 31 spouses had read a caregiver's guide. The aim of this study was to assess if caregiver's guides would help caregivers to deal with sleep/wake disorders. Amongst the 46 French guides, published between 1988 and 2013, thirty three raised the subject of the night sleep with more or less details. In these guides sleep disturbances are considered either as a symptom to be monitored or a natural aging process to be supported. We made a survey of the content of the caregiver's guides, of their goals and why they have been designed to. Then we analyze how the night sleep issue is dealt with in the guides, and eventually we consider the place to be granted to the patient in the management of his/her sleep disturbances.

  20. Cybersupport: empowering asthma caregivers.

    PubMed

    Sullivan, Claire E

    2008-01-01

    In the United States, an estimated 6.5 million children have asthma (Akinbami, 2005). Due to the chronic and unpredictable nature of asthma, the condition places excessive demands on the primary caregiver. The complexity of asthma management has required parents to take increased responsibility for the assessment and treatment of their child's asthma (Dickinson & Dignam, 2002). Many families are turning to the Internet for information and support. The purpose of this study was to gain insight into the "lived" experiences of an online asthma caregivers support group. Archived messages posted to an online discussion list were analyzed using phenomenological thematic analysis. Five themes emerged providing insight into the meaning of caregiving and the provision of social support. Online support narratives provide a unique way to gain insight and understanding of the experiences of mother's enacting the caregiver role. Understanding the everyday lives of asthma caregivers can help nurses and other health care providers better meet caregiver needs.

  1. Family caregivers and care manager support under long-term care insurance in rural Japan.

    PubMed

    Yamada, Miho; Hagihara, Akihito; Nobutomo, Koichi

    2009-01-01

    Care managers are expected to coordinate care services for the elderly and to function as a source of social support under the Long-term Care Insurance programme in Japan. Thus far, however, little attention has been paid to the social support function of the care manager. To clarify the role of care manager support, we evaluated how care manager support ('social talk,' 'information giving' and 'reassurance') affects the burden of family caregivers categorised by caregiver gender and living arrangement. The interaction between 'information giving' and 'memory and behaviour problems' had a negative effect on 'social activity' among females living with elderly relatives (p < 0.05). 'Information giving' had a direct negative effect on caregiver burden among males living with elderly relatives (p < 0.05). Although 'social talk' had a moderating effect on caregiver burden (p < 0.05), the interaction between 'social talk' and 'memory and behaviour problems' had a negative impact on caregiver burden among females living with elderly relatives (p < 0.05). These results indicate that care manager support is only effective for female caregivers living with elderly relatives, and is ineffective or works poorly for female caregivers living separately and male caregivers living with elderly relatives. We concluded that the social support function of care managers would be improved by ensuring that they have adequate time for each case, and the skills to assess psychosocial needs. To achieve these goals, it is necessary to improve the work environment and introduce systematic training for psychosocial needs assessment.

  2. The Role of Family Functioning in the Stress Process of Dementia Caregivers: A Structural Family Framework

    ERIC Educational Resources Information Center

    Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose

    2006-01-01

    Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…

  3. Improving Doctor/Caregiver Communication

    MedlinePlus

    ... Month Friend: Living Independently Group Improving Doctor/ Caregiver Communications Helpful Ideas for Family Caregivers From NFCA There is much to be gained by improving communications between family caregivers and health care professionals, especially ...

  4. Caregiver- and Patient-Directed Interventions for Dementia

    PubMed Central

    2008-01-01

    other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia. It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions. Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside. Description of Interventions The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends. Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural

  5. The role of attachment in current and future parent caregiving.

    PubMed

    Karantzas, Gery C; Evans, Lynette; Foddy, Margaret

    2010-09-01

    Few studies have investigated how attachment bonds between older parents and their adult children influence adult children's provision of care and older parents' seeking of support from kin. The aim of this study was to investigate how the attachment orientations of adult children (N = 119) and older parents (N = 148) predict family caregiving and perceptions of carer burden. Across both samples (that were unrelated), attachment dimensions were associated with current and future caregiving and care receiving and perceptions of carer burden, even when accounting for demographic variables, parental dependence and filial obligation. Specifically, attachment avoidance was associated negatively with adult children's future care of parents and positively with burden. In contrast, attachment anxiety was positively associated with older parents' seeking current support, perceptions of carer burden, and intentions to seek future support. PMID:20595205

  6. Educational support group in changing caregivers' psychological elder abuse behavior toward caring for institutionalized elders.

    PubMed

    Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti

    2009-08-01

    Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's psychological abusive behavior, reducing work stress and promoting knowledge of geriatric care-giving among a group of caregivers. A quasi-experimental design using a case control pre-post test approach was conducted. A total of 100 participants completed the study with 50 caregivers in each group. The research instruments included the Caregiver Psychological Elder Abuse Behavior Scale (CPEAB), the Work Stressors Inventory (WSI), and the Knowledge of Gerontology Nursing Scale (KGNS). The results showed that the intervention had significant effects in alleviating caregiver psychological abuse behavior and increasing care-giving knowledge in the experimental group (p = .048; .018). However, the intervention had no measurable effect on work stress (p = .66). Findings have important implications for education and programming for facility administers and long-term care policy makers when planning quality improvement for elderly care.

  7. Perceived needs of African-American caregivers of elders with dementia.

    PubMed

    Lampley-Dallas, V T; Mold, J W; Flori, D E

    2001-02-01

    To assess the perceived needs of African-American caregivers and their expectations of the health care system, perceived level of success and satisfaction in meeting their needs, and their level of distress, we convened two focus groups at a local church in Oklahoma City, OK to discuss three questions. Responses were qualitatively analyzed for common themes. The groups comprised 13 African-American caregivers of demented elders. All participants completed a demographic form, the Zarit Burden Interview, and the Depression Scale. We found that African-American caregivers are frustrated with health care and service providers. The main differences of this group compared with other caregivers were their perceptions of racism and the absence of an available local support group. This information can serve to guide future studies in developing ways to increase caregiver satisfaction, decrease caregiver stress, and increase patient quality of life for this subgroup of caregivers.

  8. The meanings caregivers ascribe to dementia-related changes in care recipients: a meta-ethnography.

    PubMed

    Lindauer, Allison; Harvath, Theresa A

    2015-01-01

    The number of individuals with dementia is increasing dramatically around the world, and because of this growth, an increase in the number of caregivers has occurred as well. Caregiving is often associated with negative outcomes (e.g., burden, depression, impaired physical health). These problems persist although much effort has been put into understanding caregiver strain. Some work has addressed the meanings caregivers ascribe to dementia-related changes, which may provide a better understanding of caregiver health and well-being. Most of this work is qualitative, but no synthesis of the literature addressing caregiver meanings of dementia-related changes has been found. The purpose of the current meta-ethnographic synthesis is to explore and interpret the literature addressing the meanings that caregivers give to dementia-related changes in their care recipients. An interpretation that incorporates findings in relation to elder mistreatment is offered. Implications for nursing care and research are discussed.

  9. Concordance of Race or Ethnicity of Interventionists and Caregivers of Dementia Patients: Relationship to Attrition and Treatment Outcomes in the REACH Study

    ERIC Educational Resources Information Center

    McGinnis, Kathleen A.; Schulz, Richard; Stone, Roslyn A.; Klinger, Julie; Mercurio, Rocco

    2006-01-01

    Purpose: We assess the effects of racial or ethnic concordance between caregivers and interventionists on caregiver attrition, change in depression, and change in burden in a multisite randomized clinical trial. Design and Methods: Family caregivers of patients with Alzheimer's disease were randomized to intervention or control groups at six sites…

  10. Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

    PubMed

    Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A

    2016-01-01

    The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.

  11. Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

    PubMed

    Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A

    2016-01-01

    The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. PMID:26782869

  12. A Randomized Trial of a CAM Therapy for Stress Reduction in American Indian and Alaskan Native Family Caregivers

    ERIC Educational Resources Information Center

    Korn, Leslie; Logsdon, Rebecca G.; Polissar, Nayak L.; Gomez-Beloz, Alfredo; Waters, Tiffany; Ryser, Rudolph

    2009-01-01

    Purpose: Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems, little is known about how caregiving stress may be alleviated among underserved ethnic minority populations. The purpose of this study was to compare a complementary and…

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

    PubMed

    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. PMID:22475406

  14. Long Distance Caregiving

    MedlinePlus

    ... life, working women with their own major family responsibilities remain our primary caregivers, more and more men are becoming caregivers. However, anyone anywhere can give care—regardless of gender, income, age, social status, and employment. No matter how great the ...

  15. Influencing Support for Caregivers

    ERIC Educational Resources Information Center

    Raphael, Carol; Cornwell, Jennifer Lin

    2008-01-01

    This article describes the challenges faced by providers in integrating and effectively using caregivers and suggests longer-range public policy approaches to address these challenges and spur system changes that respond to caregivers' needs and help them manage the demands placed upon them. A policy agenda for incorporating and supporting…

  16. The Contribution of a “Supportive Community” Program for Older Persons in Israel to Their Offspring Who Are Primary Caregivers

    PubMed Central

    Even-Zohar, Ahuva

    2015-01-01

    The “supportive community” programs in Israel provide a basket of services for older persons living in their own homes. This study examined the differences between caregiver burden and quality of life of 55 offspring who were the primary caregivers of their older parents who were members of a supportive community, compared to 64 offspring whose parents were nonmembers. The findings showed that the role stress factor of caregiving burden was lower, and the psychological health domain of quality of life was higher among offspring whose parents were members of supportive communities. Some of the predictor variables of burden were income status of caregiver, sharing with others in caregiving, and membership of the parent in a supportive community. The primary predictor variable of the quality of life was caregiving burden. The practical conclusion of this study is to further develop and market supportive community programs in various communities. PMID:26346881

  17. Improving caregivers' well-being by using technology to manage nighttime activity in persons with dementia.

    PubMed

    Spring, Heather J; Rowe, Meredeth A; Kelly, Annette

    2009-01-01

    This article reports the qualitative arm of a mixed-methods study designed to test an in-home nighttime monitoring system (NMS) that tracks the nighttime activity of persons with dementia. Fourteen caregiver interviews were analyzed using grounded theory/full conceptual description methods to determine the issues associated with providing care at night and to explore the benefits of using the NMS. Caregivers not using the NMS experienced sleep disruption, overwhelming worry, and loss of personal space, leading to decreased energy and changes in mood. When the NMS was used, caregivers reported improved "peace of mind." The fear and uncertainty associated with worry was alleviated by reliable alerts regarding the whereabouts of the person with dementia. Some caregivers were able to better balance needs for personal space with needs to remain in contact with the person with dementia. Generally, caregivers reported improved quality of sleep, although some caregivers reported more awakenings due to the system alerts. PMID:20077992

  18. Family Caregiving or Caregiving Alone: Who Helps the Helper?

    ERIC Educational Resources Information Center

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and…

  19. The Needs of Others: Gender and Sleep Interruptions for Caregivers

    ERIC Educational Resources Information Center

    Burgard, Sarah A.

    2011-01-01

    Received wisdom, some sociological theory and a handful of qualitative studies suggest that the "night shift" of caregiving work that interrupts sleep is a burden borne disproportionately by women. However, there is no broadly representative evidence to substantiate claims about who takes the night shift in contemporary American households.…

  20. Causes of elder abuse: caregiver stress versus problem relatives.

    PubMed

    Pillemer, K; Finkelhor, D

    1989-04-01

    Elderly abuse victims and a nonabused control group were compared to test the widely accepted proposition that such abuse results from the burden and stress placed on those caring for infirm and dependent elderly people. The study found substantially more support for the idea that abuse is associated with personality problems of the caregiver. PMID:2712152

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

    PubMed

    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.

  2. Identifying the needs of brain tumor patients and their caregivers.

    PubMed

    Parvataneni, Rupa; Polley, Mei-Yin; Freeman, Teresa; Lamborn, Kathleen; Prados, Michael; Butowski, Nicholas; Liu, Raymond; Clarke, Jennifer; Page, Margaretta; Rabbitt, Jane; Fedoroff, Anne; Clow, Emelia; Hsieh, Emily; Kivett, Valerie; Deboer, Rebecca; Chang, Susan

    2011-09-01

    The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process.

  3. Religious Involvement and Telomere Length in Women Family Caregivers.

    PubMed

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

    2016-01-01

    Telomere length (TL) is an indicator of cellular aging associated with longevity and psychosocial stress. We examine here the relationship between religious involvement and TL in 251 stressed female family caregivers recruited into a 2-site study. Religious involvement, perceived stress, caregiver burden, depressive symptoms, and social support were measured and correlated with TL in whole blood leukocytes. Results indicated a U-shaped relationship between religiosity and TL. Those scoring in the lowest 10% on religiosity tended to have the longest telomeres (5743 bp ± 367 vs. 5595 ± 383, p = 0.069). However, among the 90% of caregivers who were at least somewhat religious, religiosity was significantly and positively related to TL after controlling for covariates (B = 1.74, SE = 0.82, p = 0.034). Whereas nonreligious caregivers have relatively long telomeres, we found a positive relationship between religiosity and TL among those who are at least somewhat religious.

  4. Adapters, strugglers, and case managers: a typology of spouse caregivers.

    PubMed

    Davis, Linda Lindsey; Chestnutt, Deborah; Molloy, Margory; Deshefy-Longhi, Tess; Shim, Bomin; Gilliss, Catherine L

    2014-11-01

    Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer's or Parkinson's disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case managers' interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver's management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed.

  5. A telephone intervention for dementia caregivers: background, design, and baseline characteristics.

    PubMed

    Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D; Grover, Christine; Ott, Brian R; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

    2013-11-01

    Family caregivers of individuals with dementia are at heightened risk for emotional and mental health problems. Many caregivers do not seek assistance or become isolated in their caregiving role. Multi-component interventions have demonstrated efficacy for reducing emotional distress and burden, although these approaches are potentially costly and are not widely accessible. In response to these issues, we developed the Family Intervention: Telephone Tracking - Caregiver (FITT-C), which is an entirely telephone-based psychosocial intervention. The purpose of this paper is to describe the study design, methodology, and baseline data for the trial. This study uses a randomized controlled trial design to examine the efficacy of the FITT-C to reduce depressive symptoms and burden in distressed dementia caregivers. All participants (n=250) received a packet of educational materials and were randomly assigned to receive 6 months of the FITT-C intervention or non-directive telephone support. The FITT-C intervention was designed to reduce distress in caregivers and is based on the McMaster Model of Family Functioning, transition theory, and Lazarus and Folkman's Stress and Coping Models. The primary dependent variables were depressive symptoms (Centers for Epidemiological Studies - Depression) and burden (Zarit Burden Interview, Revised Memory and Behavior Problems Checklist - Reaction). Secondary outcome measures included family functioning, self-efficacy, and health-related quality of life. Results of the study will provide important data about the efficacy of a telephone-based approach to reduce distress in dementia caregivers.

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

    PubMed Central

    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

  7. Group caregiver language checklist.

    PubMed

    Pearson, M E; Shelton, D; Pearson, A A; Miller, M

    1992-01-01

    Because young children with language disabilities frequently are placed in group-care settings, there is a need to make judgments concerning the language environment of those settings. The GCLC is offered as one procedure for assessment of the language environment provided by the caregiver(s) in a group setting. The assessment provides information that may assist in matching the environment to a particular child's needs and may provide a basis for assisting caregivers in improving the language environment and addressing a child's needs. The authors welcome comments from the readers.

  8. Coping among the caregivers of patients with schizophrenia

    PubMed Central

    Grover, Sandeep; Pradyumna; Chakrabarti, Subho

    2015-01-01

    Coping is understood as the process of managing external or internal demands that are considered as taxing or exceeding the resources of the person. There is no formal classification of coping strategies, and these are understood as adaptive versus maladaptive and problem focuses versus emotion-focused. Understanding the commonly used coping strategies in a particular group of subjects can provide valuable insights for designing interventions to reduce the stress. In this review, we look at the literature which is available with regards to the coping strategies used by the caregivers of patients with schizophrenia. Findings suggest that caregivers of patients with schizophrenia use mixed type of coping mechanisms to deal with the stress of caregiving. The coping strategies are shown to have association with variables such as caregiver burden, caregiving experience, expressed emotions, social support, psychological morbidity in the caregivers, quality of life of caregivers and psychopathology in patients. One of the major limitations of the literature is that there is a lot of variability in the assessment instruments used across different studies to assess coping. PMID:26257476

  9. Caregiver Health and Wellness

    MedlinePlus

    ... content was developed with general underwriting support from Nature Made®. ... Caregiver stress fact sheet by U.S. Department of Health and Human Services, Office on Women’s Health ( April 10, 2012, ...

  10. Caregivers and Serious Illness

    MedlinePlus

    ... index. aspx National Respite Locator Information on respite services in your community http: / / archrespite. org/ respitelocator Healthfinder.gov Basic tips and strategies for caregivers http: / / www. healthfinder. gov/ HealthTopics/ Category/ ...

  11. [The system of informal caregiving as inequality].

    PubMed

    García-Calvente, María del Mar; Mateo-Rodríguez, Inmaculada; Eguiguren, Ana P

    2004-05-01

    In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.

  12. Upping the ante: relative caregivers' perceptions of changes in child welfare policies.

    PubMed

    O'Brien, P; Massat, C R; Gleeson, J P

    2001-01-01

    Thirty-five caregivers of related children who were in the custody of the child welfare system were interviewed individually or in focus groups as the state child welfare system implemented new federal and state policies encouraging these caregivers to adopt or assume guardianship of the children in their care. Interviews were transcribed and analyzed using qualitative methods. Issues of concern included emergency entrance into caregiving; the simultaneous satisfaction and burden of caregiving; obstacles to caregiving, adoption, or guardianship; complex changes in family dynamics following placement of children; sources of support; and caution regarding adoption or guardianship. The caregivers also offered recommendations for the child welfare system. Policy, practice, and research implications are discussed.

  13. Clinical effectiveness of a skills training intervention for caregivers in improving patient and caregiver health following in-patient treatment for severe anorexia nervosa: pragmatic randomised controlled trial

    PubMed Central

    Hibbs, Rebecca; Magill, Nicholas; Goddard, Elizabeth; Rhind, Charlotte; Raenker, Simone; Macdonald, Pamela; Todd, Gill; Arcelus, Jon; Morgan, John; Beecham, Jennifer; Schmidt, Ulrike; Landau, Sabine

    2015-01-01

    Background Families express a need for information to support people with severe anorexia nervosa. Aims To examine the impact of the addition of a skills training intervention for caregivers (Experienced Caregivers Helping Others, ECHO) to standard care. Method Patients over the age of 12 (mean age 26 years, duration 72 months illness) with a primary diagnosis of anorexia nervosa and their caregivers were recruited from 15 in-patient services in the UK. Families were randomised to ECHO (a book, DVDs and five coaching sessions per caregiver) or treatment as usual. Patient (n=178) and caregiver (n=268) outcomes were measured at discharge and 6 and 12 months after discharge. Results Patients with caregivers in the ECHO group had reduced eating disorder psychopathology (EDE-Q) and improved quality of life (WHO-Quol; both effects small) and reduced in-patient bed days (7–12 months post-discharge). Caregivers in the ECHO group had reduced burden (Eating Disorder Symptom Impact Scale, EDSIS), expressed emotion (Family Questionnaire, FQ) and time spent caregiving at 6 months but these effects were diminished at 12 months. Conclusions Small but sustained improvements in symptoms and bed use are seen in the intervention group. Moreover, caregivers were less burdened and spent less time providing care. Caregivers had most benefit at 6 months suggesting that booster sessions, perhaps jointly with the patients, may be needed to maintain the effect. Sharing skills and information with caregivers may be an effective way to improve outcomes. This randomised controlled trial (RCT) was registered with Current Controlled Trials ISRCTN06149665. Declaration of interest J.T. is a co-author of the book used in the ECHO intervention and receives royalties. Copyright and usage © The Royal College of Psychiatrists 2015. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) licence.

  14. The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

    PubMed

    Gonçalves-Pereira, Manuel; Zarit, Steven H

    2014-01-01

    The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings.

  15. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials.

    PubMed

    Northouse, Laurel L; Katapodi, Maria C; Song, Lixin; Zhang, Lingling; Mood, Darlene W

    2010-01-01

    Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta-analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self-efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research-tested interventions to help caregivers and patients cope effectively and maintain their quality of life.

  16. Does social support impact depression in caregivers of adults ageing with spinal cord injuries?

    PubMed Central

    Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard

    2013-01-01

    Objective The objective of this study was to examine the role of social support in predicting depression in caregivers of adults aging with spinal cord injuries (SCI). Design Cross-sectional secondary data analyses were conducted for this study. Setting Participants were recruited from multiple community locations in Pittsburgh, PA and Miami, FL. Subjects Community-dwelling caregivers of aging adults with SCI (N=173) were interviewed as part of a multisite randomized clinical trial. Main measures The Center for Epidemiological Studies Depression Scale measured caregiver depression symptom levels. A hierarchical multiple regression analysis examined the effect of social support (social integration, received social support, and negative social interactions) on depressive symptoms levels for the caregivers of adults aging with SCI, controlling for demographic characteristics and caregiving characteristics. Results Caregivers were, on average, 53 years old (SD=15) and care-recipients were 55 years old (SD=13). Average Center for Epidemiological Studies Depression Scale scores indicated that sixty-nine (40%) caregivers had significant depressive symptoms (mean 8.69, SD=5.5). Negative social interactions (β̂ =.27, P<.01) and social integration (β̂ =−.25, P<.01) were significant independent predictors of depressive symptom levels in caregivers of adults aging with SCI. Conclusions Findings demonstrate that negative social interactions and social integration are associated with burden in caregivers of adults aging with SCI. Negative social interactions and social integration should be investigated in assessments and interventions intended to target caregiver depressive symptom levels. PMID:23117350

  17. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review 1

    PubMed Central

    Macedo, Eliza Cristina; da Silva, Leila Rangel; Paiva, Mirian Santos; Ramos, Maria Natália Pereira

    2015-01-01

    Abstract Objective: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. Method: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. Results: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden. PMID:26444180

  18. [Immigrant caregivers: characteristics of the care provided to dependent elders].

    PubMed

    Galiana-Gómez de Cádiz, Maria José; de la Cuesta-Benjumea, Carmen; Donet-Montagut, Teresa

    2008-01-01

    In Spain, care in dependency has traditionally fallen to family members but this situation is changing. The existence of a model based on the family's contribution used to enable dependent elders to remain at home; however, social changes such as the crisis of the informal caregiving system, which has been extensively discussed in the literature is leading to the collapse of this situation. In an attempt to respond to this crisis, society has resorted to contracting immigrant women to carry out family care. Responsibility and caregiving is thus transferred to these women and is financially remunerated. Thus, family caregiving of the elderly provided by immigrants is presented as an important resource for care. The care of dependent elderly individuals is often the only opportunity for immigrant women who arrive in Spain in search of better conditions to become incorporated into the labor market. The dispersion of studies on immigrant care highlights the invisibility of this phenomenon. Based on a literature review, the present study highlights the situation of the family care provided by immigrant women and outlines the characteristics of this type of care. The relationship between caregiving and the conditions in which this care takes place is described. Given their situation, immigrant caregivers have a heavy burden of care and limited respite from caregiving responsibilities.

  19. Recalled attributes of parents with Alzheimer's disease: relevance for caregiving

    PubMed Central

    Chiriboga, David A.; Jang, Yuri; Molinari, Victor; Kim, Giyeon; Ko, Jung Eun

    2014-01-01

    Health psychology has long been involved in studies of factors that lead to more effective caregiving. Drawing on the theory of distributive justice, the underlying hypothesis of this paper was that perceptions of what a demented parent was like, prior to becoming ill, influence an adult child caregiver's provision of care, as well as the caregiver's own well-being. A secondary question dealt with the nature of retrospective ratings by caregiver informants. The sample consisted of triads of two adult children (N = 385) and a parent (N = 201) diagnosed with Alzheimer's disease, although in a few instances only one adult child was interviewed. Both retrospective and current ratings of the parent were made by caregivers, who were administered a semantic differential instrument twice over a 10-month period. Comparison of ratings from first and second interview waves suggested that perceptions of what a parent was like, prior to the onset of dementia, were more stable over time than perceptions of what the parent was currently like, at each interview. Ratings of premorbid attributes were more strongly related to ratings of the present for those parents who displayed the least evidence of cognitive decline. Regression analyses supported the hypothesized relationship between adult children's perceptions and both provision of care and well-being variables. Results have implications for projections of caregiver burden and for placement into long-term care. PMID:25750833

  20. R. I. Caregivers. Caring: A Training Program for Family Caregivers.

    ERIC Educational Resources Information Center

    Rhode Island State Dept. of Elderly Affairs, Providence.

    This document presents a training manual to help caregivers who provide care to older family members and friends at home. The program, which offers a practical approach to caregiving and a realistic view of the aging process, is intended to clarify the problems confronting caregivers of older people, serve as a basic source manual for training…

  1. Family Caregiving. A Manual for Caregivers of Older Adults.

    ERIC Educational Resources Information Center

    Mehrotra, Chandra, Ed.; And Others

    This manual provides caregivers with practical knowledge and suggestions that could be of help to them in this important role. Chapter 1 gives an overview of the volume and tells how to use it. Chapter 2 identifies who caregivers are, what they do, and what changes have taken place in their lives since they became caregivers. Chapter 3 begins with…

  2. Stress Relief for the Caregiver

    MedlinePlus

    ... you can take a break from your caregiving responsibilities to enjoy time alone or with friends. Visit ... respite, by allowing another individual to assume caregiving responsibilities for a limited period of time. It gives ...

  3. Mexican American intergenerational caregiving model.

    PubMed

    Escandón, Socorro

    2006-08-01

    This study employed grounded theory to formulate a conceptual model of intergenerational caregiving among Mexican American families. The sample consisted of 10 Mexican American caregivers of various generations older than 21 who provided at least one intermittent service (without pay at least once a month) to an elder, related through consanguinal or acquired kinship ties. The inductively generated theory of role acceptance is composed of four phases: (a) introduction--early caregiving experiences, (b) role reconciliation, (c) role imprint, and (d) providing or projecting care. This model can be used to study varied generations of Mexican American caregivers. It also provides a framework for comparison with other groups of caregivers. The results can help in designing nursing interventions to support caregivers based on understanding the issues, to create and design systems that address the varying and ever-changing needs of informal caregivers, and to assist in the formulation of policy that supports Mexican American caregivers.

  4. Caregiving: A Qualitative Concept Analysis

    ERIC Educational Resources Information Center

    Hermanns, Melinda; Mastel-Smith, Beth

    2012-01-01

    A common definition of caregiving does not exist. In an attempt to define the concept of caregiving, the authors used a hybrid qualitative model of concept development to analyze caregiving. The model consists of three phases: (a) theoretical, (b) fieldwork, and (c) analytical. The theoretical phase involves conducting an interdisciplinary…

  5. 76 FR 26147 - Caregivers Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-05

    ... for a caregiver. It would not be rational to decouple the concepts such that, for example, a veteran... of the eligible veteran's and caregiver's physical and emotional states, observing for signs of abuse... offered to Primary and Secondary Family Caregivers to include individual and group therapy, counseling...

  6. Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study.

    PubMed

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

    2015-09-01

    Family members in families with severe chronic disease play important roles in care-giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community-based healthcare. The sample represents experiences from care-giving in all stages of the disease. We conducted semi-structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross-case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care-giving.

  7. Family caregiving or caregiving alone: who helps the helper?

    PubMed

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and responsibilities involving not only the caregiver who was the target respondent in this research, but also others identified as helpers in the provision of care. The data for this study are derived from the Work and Eldercare Research group of CARNET: The Canadian Aging Research Network. Secondary analysis of CARNET data focuses on data collected from 250 individuals with significant caregiving responsibilities for at least one older person. Findings extend Kahn & Antonucci's convoys of social support model (1981) and Cantor's model of social care (1991) by disentangling some of the dimensions of helping and caregiving, such as the distinction between direct and assistive help.

  8. Eldercare at Home: Caregiving

    MedlinePlus

    ... fill up all your time. This will then increase your stress and reduce your ability to give good care. Pay attention to positive ... If you do, caregiving can wear you out, increase your stress, and interfere with your ability to give good care at home. Support groups ...

  9. Care for the caregiver.

    PubMed

    Lynch, Bridget

    2002-09-01

    The issue of caring for the midwife caregiver is a complex issue when viewed within a global context. While national health-care systems vary significantly, midwives around the world are affected by the policies of economic globalisation. Caring for the caregiver must take place within the notion of a worldwide community of midwives, where caring for the caregiver is seen as caring for each other. In this address I examine the issue of caring for the caregiver from four perspectives: global, professional, workplace and personal. As midwives living and working in stressful environments, we are called upon to examine the ways in which we may be contributing to the systems that create the stresses. From the capabilities available to us through the International Confederation of Midwives to apply political pressure to global policies, to individual workplace conditions, midwives can affect change. By exploring alternative models and attitudes and challenging the status quo, we can apply our midwifery skills of caring to each other.

  10. Adapters, Strugglers, and Case Managers: A Typology of Spouse Caregivers

    PubMed Central

    Davis, Linda Lindsey; Chestnutt, Deborah; Molloy, Margory; Deshefy-Longhi, Tess; Shim, Bomin; Gilliss, Catherine L.

    2015-01-01

    Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer’s or Parkinson’s disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case Managers’ interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver’s management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed. PMID:25189535

  11. Spousal caregiving for stroke survivors.

    PubMed

    Coombs, Ursula Eileen

    2007-04-01

    Caregiving for a spouse who has survived a stroke has multidimensional implications for both the partner and the spousal caregiver. A phenomenological study was conducted to examine the experiences of spousal caregivers for stroke survivors. Eight spouses who met the inclusion criteria participated in the study. van Manen's (1997) approach was used to examine the spousal caregivers' experiences. Data were collected through audiotapes from semistructured interviews. The interviews were transcribed to form textual descriptions of the caregivers' experiences. Six interrelated themes emerged through data analysis: experiencing a profound sense of loss, adjusting to a new relationship with a spouse, taking on new responsibilities, feeling the demands of caregiving, having to depend on the support of others, and maintaining hope and optimism. This study contributes to healthcare providers' understanding and knowledge of spousal caregivers for stroke survivors, and supports the need for continued research in this area. PMID:17477226

  12. Neuroticism, coping strategies, and negative well-being among caregivers.

    PubMed

    Patrick, J H; Hayden, J M

    1999-06-01

    Neuroticism was incorporated into a model for predicting the well-being of family caregivers. Using data from 596 women with an adult child with a chronic disability, the model hypothesizes direct effects of neuroticism on a caregiver's perceptions of the stressor, on her wishful-escapism and problem-focused coping, and on psychological well-being. Results indicate that neuroticism exerts direct and indirect effects on negative well-being. Results also indicate that stressors have direct effects on both wishful-escapism coping and problem-focused coping. Burden had direct effects on negative psychological well-being. Diagnosis influences the model by having direct effects on stressors and wishful-escapism coping but not on problem-focused coping or burden. Inclusion of individual level variables, such as neuroticism, results in a substantial amount of explained variance in negative well-being.

  13. Health-Related Quality of Life in Caregivers of Individuals with Traumatic Brain Injury: Development of a Conceptual Model

    PubMed Central

    Carlozzi, Noelle E.; Kratz, Anna L.; Sander, Angelle; Chiaravalloti, Nancy D.; Brickell, Tracey; Lange, Rael; Hahn, Elizabeth A.; Austin, Amy; Miner, Jennifer A.; Tulsky, David S.

    2014-01-01

    Objective To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and propose an integrated conceptual framework based on this information. Design Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL. Setting Focus groups were conducted at three rehabilitation centers across the United States (Michigan, New Jersey, and Texas). Participants 55 caregivers of individuals with moderate-to-severe TBI Interventions Not Applicable. Main Outcome Measures Not Applicable. Results Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments); other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc.), and caregiver strain (burden, stress, feeling overwhelmed, etc.). Conclusion Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group. PMID:25239281

  14. Effects of Support on the Attitude of the Primary Caregiver of a Child with Down Syndrome.

    ERIC Educational Resources Information Center

    Heritage, Jeannette G.; And Others

    Parents of children with mental or physical handicaps often experience overwhelming feelings of stress and anxiety. Research indicates that support for the primary caregiver can help alleviate some stressors involved in raising a child with a handicap. This study examined how level of support affects feelings of satisfaction the primary caregiver…

  15. Individuals with developmental disabilities and their caregivers.

    PubMed

    McCallion, Philip; Nickle, Tara

    2008-01-01

    Adults with Developmental Disabilities (DD) are experiencing increased longevity and the projected number of older persons with DD is expected to double by 2020. As a result, concerns have been raised that agencies and professional staff are ill-prepared to address the increased needs of an older population with lifelong disabilities. The caregiving life of familis of person with DD now spans multiple decades and is increasingly a feature of advanced age for parents and grandparents, and of old age for siblings. Problem behaviors, onset or poor management of mental health concerns and inadequate planning for their aging years are the biggest barriers to successful aging for persons with developmental disabilities. However, psychosocial interventions have the potential to alleviate these barriers and promote positive aging for older persons with developmental disabilities. The evidence for the effectiveness of such interventions will be examined within this article.

  16. [Caring friends and neighbors as informal caregivers of older adults: A comparison with offspring].

    PubMed

    Egging, S; de Boer, A H; Stevens, N L

    2011-12-01

    This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.

  17. Coping and caregiving experience of parents of children and adolescents with type-1 diabetes: An exploratory study

    PubMed Central

    Grover, Sandeep; Bhadada, Sanjay; Kate, Natasha; Sarkar, Siddharth; Bhansali, Anil; Avasthi, Ajit; Sharma, Sunil; Goel, Rashi

    2016-01-01

    Aims: To assess the coping strategies and the relationship of coping with subjective burden and positive caregiving consequences as perceived by the caregivers of children and adolescents with Type-1 diabetes. Design: Cross-sectional assessment. Setting: Outpatient of Endocrinology Department. Participants: Forty-one parents of children and adolescents with Type-1 diabetes Main Outcome Measure: Ways of coping checklist (WCC), involvement evaluation questionnaire (IEQ) and scale for assessment of positive aspects of caregiving experience (scale for positive aspects of caregiving experience) to study the coping, burden and positive aspects of caregiving respectively. Results: On WCC, the highest score was obtained for seeking social support, followed by planful problem-solving. More frequent use of coping strategies of confrontation and escape-avoidance was associated with significantly higher score on the tension domain of IEQ. Those who more frequently used problem-solving and distancing had significantly higher scores on worrying-urging-I domain of IEQ. supervision domain of IEQ was associated with more frequent use of confrontation, self-control, social support, escape-avoidance and positive reappraisal. More frequent use of distancing and problem-solving were associated with lower caregiving personal gains. More frequent use of problem-solving was associated with higher caregiver satisfaction and lower scores in the domain of self-esteem and social aspects of caring. Conclusion: Caregivers of patients with Type-1 diabetes predominantly use adaptive coping strategies. Higher use of certain coping strategies is associated with negative and positive caregiving consequences. PMID:26955574

  18. Buffet Load Alleviation

    NASA Technical Reports Server (NTRS)

    Ryall, T. G.; Moses, R. W.; Hopkins, M. A.; Henderson, D.; Zimcik, D. G.; Nitzsche, F.

    2004-01-01

    High performance aircraft are, by their very nature, often required to undergo maneuvers involving high angles of attack. Under these conditions unsteady vortices emanating from the wing and the fuselage will impinge on the twin fins (required for directional stability) causing excessive buffet loads, in some circumstances, to be applied to the aircraft. These loads result in oscillatory stresses, which may cause significant amounts of fatigue damage. Active control is a possible solution to this important problem. A full-scale test was carried out on an F/A-18 fuselage and fins using piezoceramic actuators to control the vibrations. Buffet loads were simulated using very powerful electromagnetic shakers. The first phase of this test was concerned with the open loop system identification whereas the second stage involved implementing linear time invariant control laws. This paper looks at some of the problems encountered as well as the corresponding solutions and some results. It is expected that flight trials of a similar control system to alleviate buffet will occur as early as 2001.

  19. Family caregiver versus nursing assessments of elderly self-care abilities.

    PubMed

    Biggs, A J

    1990-08-01

    An assessment guide to be used by family caregivers would provide positive reinforcement oriented to what elderly family members can do in caring for themselves. Findings from this study indicate that there is an acceptable level of agreement between assessments of elderly self-care by family caregivers of dependent elderly and nursing assessments of the same self-care abilities. By actively involving family caregivers in the assessment of self-care abilities of their dependent elderly, family integrity and functioning may also be enhanced and families may feel more competent and less burdened as they provide assistance to elderly family members.

  20. The burden of allergic rhinitis.

    PubMed

    Nathan, Robert A

    2007-01-01

    Although formerly regarded as a nuisance disease, allergic rhinitis (AR) has a considerable effect on quality of life and can have significant consequences if left untreated. The total burden of this disease lies not only in impaired physical and social functioning but also in a financial burden made greater when considering evidence that AR is a possible causal factor in comorbid diseases such as asthma or sinusitis. Compared with matched controls, patients with AR have an approximate twofold increase in medication costs and 1.8-fold the number of visits to health practitioners. Hidden direct costs include the treatment of comorbid asthma, chronic sinusitis, otitis media, upper respiratory infection, and nasal polyposis. Nasal congestion, the most prominent symptom in AR, is associated with sleep-disordered breathing, a condition that can have a profound effect on mental health, including increased psychiatric disorders, depression, anxiety, and alcohol abuse. Furthermore, sleep-disordered breathing in childhood and adolescence is associated with increased disorders of learning performance, behavior, and attention. In the United States, AR results in 3.5 million lost workdays and 2 million lost schooldays annually. Patients struggle to alleviate their misery, frequently self-adjusting their treatment regimen of over-the-counter and prescription medications because of lack of efficacy, deterioration of efficacy, lack of 24-hour relief, and bothersome side effects. Ironically, health care providers overestimate patient satisfaction with therapy. Therefore, improvement in patient-practitioner communication may enhance patient adherence with prescribed regimens. PMID:17390749

  1. Patient/Caregiver influences for declining participation in supportive oncology trials.

    PubMed

    Buss, Mary K; DuBenske, Lori L; Dinauer, Susan; Gustafson, David H; McTavish, Fiona; Cleary, James F

    2008-04-01

    Enrolling adequate numbers of subjects to research projects that focus on the supportive needs of patients and caregivers is difficult, and this difficulty significantly impedes investigation of this important research area. We report reasons that patients or their informal caregivers declined to participate in one of two randomized, longitudinal clinical trials testing the Comprehensive Health Enhancement Support System (CHESS), a Web-based information and support scheme for people with advanced cancer and their primary informal caregivers. Patients were asked why they declined participation in these trials; their responses then were recorded and coded into themes. The leading reasons included factors related to using a computer (eg, lack of familiarity with using this technology, access to other resources), being attended to by a caregiver (eg, poor caregiver health, caregiver burden, patient doing well and not needing a caregiver), taking part in a study (eg, survey burden, privacy concerns, wording of the consent form), dealing with personal issues (eg, time commitment, timing of study, feelings of being overwhelmed, and coping styles), and lack of interest. By using eligibility criteria that largely parallel those for studies of chemotherapeutic regimens, this research project highlighted reasons why subjects decline participation in clinical trials. This information was specific to supportive care trials; it may help researchers plan recruitment strategies and enrollment targets.

  2. Patterns of Caregiving of Cuban, Other Hispanic, Caribbean Black, and White Elders in South Florida

    PubMed Central

    Buckwalter, Kathleen C.; Newman, Frederick L.; Mauro, Ana C.

    2013-01-01

    Caregivers in Miami, Florida (185 Cubans, 108 other Hispanics, 229 non-Hispanic Whites, and 73 Caribbean Blacks) were described and compared along demographic and health variables, cultural attitudes, and caregiving behaviors. Participants were recruited at random through Home Health Services (61 %) and convenience sampling in the community (39 %), and interviewed at their home. Standardized instruments and measures constructed for this study were pretested. Multivariate analyses showed that the ethnic groups differed in age, education, income, and number of persons giving care, while caregiver health and patient functioning were similar. Controlling for demographics, differences in cultural variables were small. The sense of obligation, emotional attachment, openness about who should give care, spirituality, use of family help or community services were comparable in all groups. Commitment to caregiving was high, driven mainly by patient needs. Cubans had the greatest family stability, and worked the hardest, with the lowest sense of burden. Caribbean Black caregivers lived in bigger families, were youngest, and their patients had the lowest cognitive status. Burden was felt most by White caregivers who were older than the others. Professionals need to understand complex belief systems and behavior patterns to assist caregivers in mobilizing appropriate resources. PMID:23636833

  3. Alzheimer caregiver stress: basal natural killer cell activity, pituitary-adrenal cortical function, and sympathetic tone.

    PubMed

    Irwin, M; Hauger, R; Patterson, T L; Semple, S; Ziegler, M; Grant, I

    1997-01-01

    The association between Alzheimer caregiving and natural killer (NK) cell activity and basal plasma levels of adrenocorticotropic hormone (ACTH), cortisol, beta-endorphin, prolactin, epinephrine, norepinephrine, and neuropeptide Y was determined in 100 spousal Alzheimer caregivers and 33 age- and gender-comparable control volunteers upon intake into a study of the psychological and physiologic impact of caregiving. The relationship between these physiologic measures and individual characteristics such as age, gender, medical status, severity of stress, severity of depressive symptoms, and caregiver burden was tested. In addition, the association between NK activity and alterations of the neuroendocrine measures was investigated. As compared to controls, the Alzheimer caregivers had similar levels of NK activity and of basal plasma neuroendocrine hormones and sympathetic measures. While older age and male gender status were associated with increased levels of ACTH, neither medical caseness, severity of life stress, nor severity of depressive symptoms was associated with alterations in any of the multiple physiologic domains. Classification of Alzheimer caregiver burden identified caregivers who were mismatched in terms of the amount of care they were required to provide and the amount of respite time received. The mismatched caregivers had significantly higher basal plasma ACTH but no change in other physiological measures, as compared to non-mismatched caregivers. NK activity was negatively correlated with plasma levels of neuropeptide Y but not with any of the other neuroendocrine measures. Based on this cross-sectional evaluation of NK activity and neuroendocrine and sympathetic measures, we conclude that most Alzheimer caregivers do not show evidence of altered basal physiology.

  4. Online support for employed informal caregivers: psychosocial outcomes.

    PubMed

    Klemm, Paula R; Hayes, Evelyn R; Diefenbeck, Cynthia A; Milcarek, Barry

    2014-01-01

    The overall objectives of this project were to evaluate whether psychosocial outcomes in employed family caregivers of people with chronic disease, who participate in online support, differ from nonactive participants and whether psychosocial outcomes differ based on the format of online group support. A randomized longitudinal design comparing two types of online support groups and nonactive participants, on the basis of three principal measures, was utilized. Eighty-six self-reported family caregivers of people with chronic disease, who spoke English and had Internet access, took part in the study. Subjects were randomly assigned to professionally facilitated/psychoeducational or moderated/peer-directed online support groups for a period of 12 weeks. The setting was a password-protected Web page housed on a university server. Independent variables were type of online support groups and level of participation; the dependent variables were depressive symptoms, caregiver burden, and caregiver quality of life. There were significant differences in depressive symptoms and quality of life among nonactive participants and either of the two intervention groups, but not between the two intervention groups. Results suggest that professionally facilitated/psychoeducational and moderated/peer-directed online support groups help reduce depressive symptoms and improve quality of life for those who actively participate and that both types of online support groups provided similar benefits. Men and minorities should be targeted in future caregiver research.

  5. Online support for employed informal caregivers: psychosocial outcomes.

    PubMed

    Klemm, Paula R; Hayes, Evelyn R; Diefenbeck, Cynthia A; Milcarek, Barry

    2014-01-01

    The overall objectives of this project were to evaluate whether psychosocial outcomes in employed family caregivers of people with chronic disease, who participate in online support, differ from nonactive participants and whether psychosocial outcomes differ based on the format of online group support. A randomized longitudinal design comparing two types of online support groups and nonactive participants, on the basis of three principal measures, was utilized. Eighty-six self-reported family caregivers of people with chronic disease, who spoke English and had Internet access, took part in the study. Subjects were randomly assigned to professionally facilitated/psychoeducational or moderated/peer-directed online support groups for a period of 12 weeks. The setting was a password-protected Web page housed on a university server. Independent variables were type of online support groups and level of participation; the dependent variables were depressive symptoms, caregiver burden, and caregiver quality of life. There were significant differences in depressive symptoms and quality of life among nonactive participants and either of the two intervention groups, but not between the two intervention groups. Results suggest that professionally facilitated/psychoeducational and moderated/peer-directed online support groups help reduce depressive symptoms and improve quality of life for those who actively participate and that both types of online support groups provided similar benefits. Men and minorities should be targeted in future caregiver research. PMID:24284908

  6. Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol

    PubMed Central

    2014-01-01

    Background Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver. Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. Methods/design Design: Controlled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Study area: Primary Health Care network (9 PHCTs). Study participants: Primary informal caregivers of patients receiving home health care from participating PHCTs. Sample: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. Intervention: a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Control: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request. Data analysis Dependent variables: Caregiver burden (short-form Zarit test), caregivers’ social support (Medical Outcomes Study), and

  7. The caregiving experience among Hispanic caregivers of dementia patients.

    PubMed

    Mier, Nelda

    2007-01-01

    This research reviewed studies that investigated factors influencing the caregiving experience among informal Hispanic caregivers of dementia patients. This review identified 24 journal articles published between 1985 and 2003. Variables studied were depression and social support. In addition, methodological issues were detected such as sampling bias and multiple measurements. This review concluded that there is a need for an extensive, in depth research of the caregiving experience among Hispanics and further research needs are discussed.

  8. "I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

    ERIC Educational Resources Information Center

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and navigating…

  9. Ethical Dimensions and Filial Caregiving

    PubMed Central

    McCarty, Ellen F.; Hendricks, Constance S.; Hendricks, Denisha L.; McCarty, Kathleen M.

    2013-01-01

    The elderly are growing rapidly today as life expectancy increases. As this longevity has increased, so has the need for filial caregivers. While much has been written about caregiving stress, little has been written regarding the ethical dimensions of filial responsibility and daughter and son caregivers’ perceptions of responsibility and moral demands. This paper will address the concept of family caregiving and contextual family characteristics. Family characteristics will expand awareness of the interrelationship value between the nature of the prior filial relationship, image of caregiving, and ethical views that underscore acceptance of the filial obligation. An explanation of both the interview process and selected measurements that speak to ethical perspective, sense of caregiving image, and expectations of filial caregiving will also be addressed. Therefore, the purpose of this paper is to elucidate how adult children may be helped in an anticipatory and proactive manner as more and more adult children take on parent care for longer durations of time. PMID:23459516

  10. The Male Face of Caregiving: A Scoping Review of Men Caring for a Person With Dementia.

    PubMed

    Robinson, Carole A; Bottorff, Joan L; Pesut, Barbara; Oliffe, John L; Tomlinson, Jamie

    2014-09-01

    The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men's experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men's caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men's caregiver research to men's health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners. PMID:24414033

  11. Financial Burden of Pediatric Cancer for Patients and Their Families

    PubMed Central

    Warner, Echo L.; Kirchhoff, Anne C.; Nam, Gina E.; Fluchel, Mark

    2015-01-01

    Purpose: Cancer treatment may cause financial stress for pediatric oncology patients and their families. We evaluated pediatric cancer caregivers' perceived financial burden related to socioeconomic factors (eg, parental employment) and health care use factors (eg, unexpected hospitalizations). Methods: A single-site, cross-sectional survey of primary caretakers of patients with childhood cancer was performed from July 2010 to July 2012. Eligible patients were treated at a pediatric cancer hospital, diagnosed at age ≤ 21 years and were ≤ 5 years from diagnosis (N = 254). Financial burden was rated on a visual analog scale of 0 to 100. Multivariable linear regression models were used to calculate coefficients and 95% CIs of financial burden by time since diagnosis. Results: Mean age at diagnosis was 6.8 years (SD = 5.5 years), and average time since diagnosis was 1.6 years (SD = 1.4 years). The most common diagnosis was leukemia (41.9%). When adjusted for sex, age at diagnosis, insurance status, and rural residence, caregivers whose child was 1 to 5 years from diagnosis with ≥ 5 unexpected hospitalizations experienced 24.9 (95% CI, 9.1 to 40.7; P < .01) points higher financial burden than those with no unexpected hospitalizations. In addition, when compared with families without employment disruptions, families of children 1 to 5 years from diagnosis in which a caregiver had quit or changed jobs reported 13.4 (95% CI, 3.2 to 23.6; P = .01) points higher financial burden. Conclusions: Efforts to reduce unexpected hospitalizations and employment disruptions by providing more comprehensive supportive care for pediatric patients with cancer could help ease families' financial burden. PMID:25316026

  12. Predicting Desire for Institutional Placement Among Racially Diverse Dementia Family Caregivers: The Role of Quality of Care

    PubMed Central

    Sun, Fei

    2013-01-01

    Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers’ quality of care, which encompasses caregivers’ exemplary care (EC) behaviors and caregivers’ potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. Design and Methods: A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer’s Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Results: Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Implications: Caregivers’ perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers. PMID:22961466

  13. Family Caregivers' Motives for Helping Scale derived from motivation-to-help theory.

    PubMed

    Smith, C E; Kleinbeck, S V; Boyle, D; Kochinda, C; Parker, S

    2001-01-01

    The literature does not contain a measure of family caregivers' motives for helping provide daily complex home care. Such a measure will permit nurses to assess and provide interventions specific to each caregiver's motivation for helping. The purpose of this study was to apply Batson's empirically derived helping pathway theory to the measurement of caregiver motives for helping and develop a short form that does not add to the burden of caregiving. A Principal Components factor analysis (N = 93) of Family Caregivers' Motives for Helping Scale is used. Criterion-related validity is ascertained using a triangulated, independent validation procedure with qualitative data from a subsample (N = 41). Subsample subjects' interview data were categorized, based on Batson's theoretical pathway definitions, by coders blinded to caregiver Motives for Helping Scale scores. Three of Batson's four helping pathways (reward seeking, altruism, and punishment-avoidance) were extracted during factor analysis. This three-factor solution explained 66.6% of the variance and was confirmed by a 97% agreement between three of Batson's pathways and caregivers' helping motive score. The content analyses of the descriptive interview data also coincide with the 3-factor solution. The scale items representing Batson's fourth helping pathway, distress reaction, were not retained due to cross loading. The Family Caregivers' Motives for Helping Scale accurately measures three of four theoretically derived motivations for helping another. The scale should be reanalyzed in a larger sample of caregivers. Aligning nursing interventions to caregiver motives for helping can provide reinforcement for caregivers and potentially enhance home care outcomes.

  14. Caring for the Caregivers: Patterns of Organizational Caregiving.

    ERIC Educational Resources Information Center

    Kahn, William A.

    1993-01-01

    Offers a system-level perspective on job burnout among human service workers, focusing on their internal networks of caregiving relationships. Defines and illustrates five recurring caregiving patterns characterizing agency members' relationships, ranging from supervisor support to mutual withdrawal between supervisors and subordinates. Discusses…

  15. The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach.

    PubMed

    Santin, O; Treanor, C; Mills, M; Donnelly, M

    2014-05-01

    This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well-being [36-item short-form health survey (SF-36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision-making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer-specific information may alleviate difficulties and improve health and well-being. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

  16. Information and Resources for Caregivers: Sickle Cell Disease

    MedlinePlus

    ... Decisions Find Help Caregiver Stress NYC Services National Resources Specific Illness E- Newsletter What's New Beth Israel ... Advance Directives Frequently Asked Questions Caregiver Guides Caregiver Resource Directory Asian Family Caregiver Handbook Asian Family Caregiver ...

  17. Consumption of Drugs and Nonpharmacological Therapies in Caregivers of Patients with Alzheimer's Disease: A Case-Control Study in Madrid

    PubMed Central

    Martín-García, Raquel; Martín-Avila, Guillermo; la Rubia-Marcos, María De; Maroto-Rodríguez, Raquel; Ortega-Angulo, Celia; Carreras Rodriguez, María Teresa; Abad Santos, Francisco; Gago Veiga, Ana Beatriz

    2016-01-01

    Background Dementia is a neurodegenerative disease whose prevalence is rising, and the need for assistance to patients becomes indispensable. The different types of dementia and their treatments have been widely studied; however, the health status of caregivers also requires our attention. Objective The aim of our research was to evaluate whether caregivers of patients with dementia consume more medications than the general population, indicating underlying pathologies. Methods A total of 91 caregivers of dementia patients were interviewed and their answers were compared with those from a control group of 48 people, taking into account demographic data, characteristics of patients and caregivers, pharmacological and nonpharmacological treatments and burden. Results Caregivers showed a significantly higher consumption of anxiolytics, antidepressants and antiplatelets (22.3, 13.2 and 11%, respectively) than the control group (14.6, 0 and 0%, respectively). Moreover, 45.1% of the caregivers used nonpharmacological therapies compared with 6.2% of the control group. There was a tendency to take more medications in those caregivers suffering from burden and those who had to take care of patients with behavioral changes. Conclusion Caregivers of dementia patients need more pharmacological and nonpharmacological therapies. They are a risk group that needs better care from the health system. PMID:27065471

  18. Childhood Obesity: The Caregiver's Role.

    ERIC Educational Resources Information Center

    Haschke, Bernadette

    2003-01-01

    Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)

  19. Emotional Availability: Foster Caregiving Experience

    ERIC Educational Resources Information Center

    Nelson, Dean R.

    2012-01-01

    The purpose of the study was to investigate if the emotional availability of caregivers is explanatory for successful adolescent foster care placement--from initial placement of an adolescent to age eighteen or emancipation from foster care, as mandated by the state of Colorado. Emotional availability of foster caregivers and the phenomenon's…

  20. Resurgence of Infant Caregiving Responses

    ERIC Educational Resources Information Center

    Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.

    2009-01-01

    Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…

  1. Rising Burden of Obesity in Asia

    PubMed Central

    Ramachandran, Ambady; Snehalatha, Chamukuttan

    2010-01-01

    Overweight and obesity have reached epidemic proportions in many Asian countries. These countries also face a grave burden of obesity-related disorders such as diabetes, hypertension, and cardiovascular diseases, which develop at a younger age than in Western populations. These disorders are also manifested in childhood. The major causative factors are related to the lifestyle changes occurring due to rapid socioeconomic transition. Asian populations show several differences in genetic factors when compared with the white population, and they also have lower cut points for environmental risk factors. National programmes targeting public awareness, education and improved structural facilities to facilitate healthy lifestyle are the keys to alleviate the economic and health care burden of the obesity-related disorders. PMID:20871654

  2. The feasibility of a telephone coaching program on heart failure home management for family caregivers

    PubMed Central

    Piamjariyakul, Ubolrat; Smith, Carol E.; Russell, Christy; Werkowitch, Marilyn; Elyachar, Andrea

    2012-01-01

    Objectives To test the feasibility of delivery and evaluate the helpfulness of a coaching heart failure (HF) home management program for family caregivers. Background The few available studies on providing instruction for family caregivers are limited in content for managing HF home care and guidance for program implementation. Method This pilot study employed a mixed methods design. The measures of caregiver burden, confidence, and preparedness were compared at baseline and 3 months post-intervention. Descriptive statistics were used to summarize program costs and demographic data. Content analysis research methods were used to evaluate program feasibility and helpfulness. Results Caregiver (n=10) burden scores were significantly reduced and raw scores of confidence and preparedness for HF home management improved 3 months after the intervention. Content analyses of nurse and caregiver post-intervention data found caregivers rated the program as helpful and described how they initiated HF management skills based on the program. Conclusion The program was feasible to implement. These results suggest the coaching program should be further tested with a larger sample size to evaluate its efficacy. PMID:23116654

  3. Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis.

    PubMed

    Watermeyer, Tamlyn J; Brown, Richard G; Sidle, Katie C L; Oliver, David J; Allen, Christopher; Karlsson, Joanna; Ellis, Cathy; Shaw, Christopher E; Al-Chalabi, Ammar; Goldstein, Laura H

    2015-01-01

    Up to 50% of patients with amyotrophic lateral sclerosis (ALS) show mild to moderate cognitive-behavioural change alongside their progressive functional impairment. This study examines the relative impact of patients' disease symptoms, behavioural change and current executive function and social cognition abilities on psychosocial outcomes in spouse caregivers of people with ALS. Thirty-five spouse caregivers rated their own levels of depression and anxiety, subjective burden and marital satisfaction. Caregivers also rated their partner's everyday behaviour. The patients were assessed for disease severity and cognitive function, with composite scores derived for executive function and social cognition. Regression analyses revealed that caregiver burden was predicted by the severity of patients' limb involvement and behavioural problems. Depression was predicted by patients' limb involvement, while behavioural problems and patient age predicted caregiver anxiety. Current marital satisfaction was predicted by patient behavioural problems beyond the level of pre-illness marital satisfaction. In conclusion, the study highlights the potential impact of ALS patients' functional impairment and behavioural change on ALS caregivers' psychosocial functioning. Clinical communication with ALS families should emphasise both physical and psychological challenges presented by the disease.

  4. Caregiver Mental Health and Potentially Harmful Caregiving Behavior: The Central Role of Caregiver Anger

    ERIC Educational Resources Information Center

    MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.

    2010-01-01

    Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…

  5. Care for the cancer caregiver: A systematic review

    PubMed Central

    APPLEBAUM, ALLISON J.; BREITBART, WILLIAM

    2016-01-01

    Objective Informal caregivers (ICs) are relatives, friends, and partners who have a significant relationship with and provide assistance (i.e., physical, emotional) to a patient with a life-threatening, incurable illness. The multidimensional burden that results from providing care to a patient with cancer is well documented, and as a result, a growing number of psychosocial interventions have been developed specifically to address this burden. The purpose of the present study was to characterize the state of the science of psychosocial interventions for informal cancer caregivers. Method A comprehensive systematic review of interventions for cancer caregivers was conducted via an electronic literature search of publications between 1980 and January 13, 2011. A final sample of 49 interventions was reviewed in detail. Results The interventions, which varied in terms of modality and patient population, fell into the following eight categories: psychoeducation, problem-solving/skills building interventions, supportive therapy, family/couples therapy, cognitive-behavioral therapy, interpersonal therapy, complementary and alternative medicine interventions, and existential therapy. Benefits and disadvantages of each of the categories are discussed, with special attention given to studies that produced null findings. Significance of results Beyond specific techniques, structured, goal-oriented, and time-limited interventions that are integrative appear to be the most feasible and offer the greatest benefits for ICs of cancer patients. Future studies are needed to examine the specific benefits and challenges of delivering interventions in alternative modalities (Internet, Skype) so that the needs of a greater number of ICs may be addressed. PMID:23046977

  6. Needs of caregivers of the patients with dementia.

    PubMed

    Rosa, E; Lussignoli, G; Sabbatini, F; Chiappa, A; Di Cesare, S; Lamanna, L; Zanetti, O

    2010-01-01

    This study was conducted to isolate the needs families express both for medical and psychological care, and for educational and social support in 112 caregivers of patients affected by moderate to severe dementia (mini mental state examination=MMSE score: 9+/-7) consecutively recruited at our Memory Clinic, to develop approaches as individualized as possible. The medical needs caregivers express are mainly relative to a better knowledge of the disease (78%) and the exact diagnosis (65%); the education-related needs are mainly relative to the acquisition of communicational skills (83%) and the optimal handling of cognitive (77%) and behavioral disorders (81%); the psychological ones mainly concern the area of assistance induced emotional stress management (37%) and the elaboration of feelings such as anxiety, rage and guilt (49%). Variance analysis shows a correlation between emotional caregivers' needs and the subjective and objective burdens they carry. Despite the attention to the role families play in caring for patients with a diagnoses of moderate to severe dementia, caregivers still express low levels of illness-consciousness and high levels of psychological discomfort. A lot more ought to be done in order to provide better information about the disease, about appropriate cognitive and behavioral disorder management skills, and about viable psychological support.

  7. First-time primary caregivers' experience of caring for young adults with first-episode psychosis.

    PubMed

    McCann, Terence V; Lubman, Dan I; Clark, Eileen

    2011-03-01

    Becoming a career is associated with physical, emotional, and financial hardship, with caregivers often experiencing a maelstrom of emotions as they struggle to understand what has happened to their loved one. While the burden of caring for young people with first-episode psychosis (FEP) has been well documented, much less is known about how carers develop the strength and resilience to continue caring. This qualitative study aimed to understand the experience of 20 first-time primary caregivers of young adults with FEP. Most caregivers were female (85%, n = 17) and parents (85%, n = 17). The average length of involvement as a caregiver at an FEP service was 14.5 months. Six main themes were identified in the data, highlighting the carers' experience in supporting young adults with FEP. Caregiving is a burdensome responsibility and is characterized as a roller coaster and unpredictable experience. Caregivers often feel responsible for the young person's illness; however, eventually most come to terms with the changes that have occurred in the young person with FEP. As a consequence of the illness, the relationship between caregiver and care recipient frequently becomes closer and deeper, although it is important that they both maintain hope for the future. These findings provide important insights into the experiences of first-time caregivers of young people with FEP, with direct implications for improving the information and support given to caregivers by FEP services, as well as the development of interventions that effectively address the unique challenges caregivers face following the onset of FEP. PMID:19679716

  8. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial.

    PubMed

    Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele

    2016-05-01

    Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention. PMID:26311735

  9. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial.

    PubMed

    Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele

    2016-05-01

    Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention.

  10. Evaluation of a group cognitive-behavioral dementia caregiver intervention in Latin America.

    PubMed

    Arango-Lasprilla, Juan Carlos; Panyavin, Ivan; Merchán, Edna Johanna Herrera; Perrin, Paul B; Arroyo-Anlló, Eva M; Snipes, Daniel J; Arabia, Jaqueline

    2014-09-01

    Research has identified unique cultural factors contributing to dementia caregiving in Latin America but very few caregiver interventions have been systematically piloted and evaluated in this region. The purpose of this study was to examine the effectiveness of a group cognitive-behavioral intervention in improving the mental health of dementia caregivers from Cali, Colombia. Sixty-nine caregivers of individuals with dementia were randomly assigned to the cognitive-behavioral intervention or an educational control condition, both spanning 8 weeks. Compared to controls, the treatment group showed higher satisfaction with life and lower depression and burden over the posttest and 3-month follow-ups although there was no effect of the condition on participants' stress levels.

  11. Quality of life in caregivers of patients with schizophrenia: A literature review

    PubMed Central

    Caqueo-Urízar, Alejandra; Gutiérrez-Maldonado, José; Miranda-Castillo, Claudia

    2009-01-01

    Background A couple of decades ago, hospitals or psychiatric institutions were in charge of caring for patients with schizophrenia; however, nowadays this role is performed by one or more patient's relatives. Evidence shows that informal caregivers experience negative changes in their quality of life (QOL). The aim of this study is to review the main factors associated with the QOL of caregivers of people with schizophrenia. Methods A search through databases from journals published last decade between 1998 and 2008 was performed. In accordance with the inclusion criteria, titles and abstracts of citations obtained from the search were examined independently by two authors and irrelevant articles discarded. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Where differences of opinion rose they were resolved by discussion. Out of the 258 references, 37 were included in the review. Studies which assessed factors associated with caregivers of people with schizophrenia's quality of life were included and the information summarized. Results Evidence suggest that physical, emotional and economic distress affect negatively caregiver's QOL as a result of a number of unfulfilled needs such as, restoration of patient functioning in family and social roles, economic burden, lack of spare time, among other factors. Conclusion Decreased QOL may be associated with caregivers' burden, lack of social support, course of the disease and family relationships problems. In addition, in developing countries, QOL is affected by caregivers' economic burden. High quality research is needed in order to identify factors associated with QOL over time and testing the efficacy of interventions aiming to improve QOL in caregivers of patients with schizophrenia. PMID:19747384

  12. Depressive symptoms and diurnal salivary cortisol patterns among female caregivers of stroke survivors.

    PubMed

    Saban, Karen L; Mathews, Herbert L; Bryant, Fred B; O'Brien, Timothy E; Janusek, Linda Witek

    2012-10-01

    Informal caregivers of stroke survivors experience elevated chronic stress and are at risk of developing depressive symptoms. The cumulative effects of chronic stress can increase allostatic load and dysregulate biological processes, thus increasing risk of stress-related disease. Stress-induced alterations in the pattern of cortisol secretion vary with respect to stressor onset, intensity, and chronicity. Little is known about the psychoendocrine response to stress in female caregivers of stroke survivors. The purpose of this study was to examine perceived stress, caregiver burden, and the association between caregiver depressive symptoms and diurnal cortisol in 45 females caring for a significant other who experienced a stroke within the past year. Women completed the Center for Epidemiologic Studies Depression Scale (CES-D) and collected saliva for cortisol upon awakening, 30 min postawakening, noon, and bedtime for 2 consecutive days. Results revealed that women had high levels of perceived stress and caregiver burden. In women with CES-D scores ≥ 16, salivary cortisol levels were significantly lower across the day relative to women with CES-D scores < 16. This difference persisted after adjusting for age, number of caregiving hours per week, perceived social support, and quality of sleep. Younger age was associated with more depressive symptoms as well as lower levels of cortisol at awakening and 30 min postawakening. Results demonstrate that the burden of caregiving increases risk of depressive symptoms and hypocortisolism across the day. Hypocortisolism may contribute to increased risk of depressive symptoms as a result of the loss of glucocorticoid attenuation of stress-induced inflammation.

  13. Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers

    ERIC Educational Resources Information Center

    Sodowsky, Karen

    2012-01-01

    This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were…

  14. Health Behaviors among Baby Boomer Informal Caregivers

    ERIC Educational Resources Information Center

    Hoffman, Geoffrey J.; Lee, Jihey; Mendez-Luck, Carolyn A.

    2012-01-01

    Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and…

  15. A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: Effects on distress

    PubMed Central

    Laudenslager, Mark L.; Simoneau, Teri L.; Kilbourn, Kristin; Natvig, Crystal; Philips, Sam; Spradley, Janet; Benitez, Patrick; McSweeney, Peter; Mikulich-Gilbertson, Susan K.

    2015-01-01

    Caregivers of patients receiving allogeneic hematopoietic stem cell transplants (Allo-HSCT) serve a pivotal role in patient care but experience high stress, anxiety, and depression as a result. We theorized that a stress management adapted for Allo-HSCT caregivers would reduce distress compared to treatment as usual (TAU). From 267 consecutive caregivers of Allo-HSCT patients approached, 148 (mean=53.5 years, 75.7% female) were randomized to either psychosocial intervention (n=74) or TAU (n=74). Eight 1-on-1 stress management sessions delivered across the 100 day post-transplant period focused on understanding stress, changing role(s) as caregiver, cognitive behavioral stress management, pacing respiration, and identifying social support. Primary outcomes included perceived stress (psychological) and salivary cortisol awakening response (CAR) (physiological). Randomized groups were not statistically different at baseline. Mixed models analysis of covariance (intent-to-treat) showed that intervention was associated with significantly lower caregiver stress 3 months post-transplant (Mean=20.0, CI95=17.9-22.0) compared to TAU (Mean=23.0, CI95=21.0-25.0) with an effect size (ES) of 0.39 (p=0.039). Secondary psychological outcomes, including depression and anxiety, were significantly reduced with ESs of 0.46 and 0.66 respectively. Caregiver CAR did not differ from non-caregiving controls at baseline and was unchanged by intervention. Despite significant caregiving burden, this psychosocial intervention significantly mitigated distress in Allo-HSCT caregivers. PMID:25961767

  16. Exploring Spirituality in Family Caregivers of Patients With Primary Malignant Brain Tumors Across the Disease Trajectory

    PubMed Central

    Newberry, Alyssa G.; Jean Choi, Chien-Wen; Donovan, Heidi S.; Schulz, Richard; Bender, Catherine; Given, Barbara; Sherwood, Paula

    2013-01-01

    Purpose/Objectives To determine whether the perceived level of spirituality in family caregivers of patients with primary malignant brain tumors (PMBTs) changes across the disease trajectory. Design Ongoing descriptive, longitudinal study. Setting Southwestern Pennsylvania. Sample 50 family caregivers of patients with PMBT. Methods Caregivers and care recipients were recruited at time of diagnosis. Participants were interviewed at two subse-quent time points, four and eight months following diagnosis. Main Research Variables Care recipients’ symptoms, neuro-psychologic status, and physical function, as well as caregiver social support. Findings Results showed no significant difference in spirituality scores reported at baseline and eight months (p = 0.8), suggesting that spirituality may be a stable trait across the disease trajectory. Conclusions Spirituality remains relatively stable along the course of the disease trajectory. Reports of caregiver depressive symptoms and anxiety were lower when paired with higher reports of spirituality. Implications for Nursing Clinicians can better identify caregivers at risk for negative outcomes by identifying those who report lower levels of spirituality. Future interventions should focus on the development and implementation of interventions that provide protective buffers such as increased social support. Knowledge Translation Spirituality is a relatively stable trait. High levels of spirituality can serve as a protective buffer from negative mental health outcomes. Caregivers with low levels of spirituality may be at risk for greater levels of burden, anxiety, and stress. PMID:23615145

  17. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables.

    PubMed

    Werner, Shirli; Shulman, Cory

    2013-11-01

    Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers' internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers' self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities. PMID:24055712

  18. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

    PubMed

    Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

    2015-01-01

    A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation

  19. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

    PubMed

    Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

    2015-01-01

    A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation

  20. How Do Family Caregivers of Older People Give Up Caregiving?

    PubMed Central

    Mortazavi, Hamed; Peyrovi, Hamid; Joolaee, Soodabeh

    2015-01-01

    Background Population aging has social, economic and political consequences. Most family caregivers prefer to care for their family member older person with chronic disease at home. Despite traditional culture within Iranian families, in some cases, hospitalization of the elderly in nursing home is inevitable, and this affects the old person and his/her family. The aim of this study was to explain how Iranian family cargivers give up caring their older person with chronic condition at home. Methods A grounded theory approach was used to conduct the study. The study setting included four nursing homes under the auspices of Iran Welfare Organization. Fourteen participants were recruited through purposive sampling. Data were collected from December 2010 to March 2011 by Semi-structured interviews lasting about 17 to 95 minutes (average 52 minutes). Constant comparative analysis was used to analyze the data. Results Three main categories appeared at the end of the analysis: “going out of the road of usual life”, “challenge of meeting older person, family and caregivers care needs”, and “the appearance of inconstancy in the family”. They explained exclusively how family caregivers of old people give up caregiving. Conclusion Health care providers are recommended to become familiar with challenges of family caregivers in taking care of older person with chronic disease at home, and then organize their supportive and consulting actions according to family situations in order to improve the life quality of older person and family caregivers. PMID:26171407

  1. Burden of pediatric hepatitis C.

    PubMed

    El-Shabrawi, Mortada Hassan; Kamal, Naglaa Mohamed

    2013-11-28

    Hepatitis C virus (HCV) is a major health burden infecting 170-210 million people worldwide. Additional 3-4 millions are newly-infected annually. Prevalence of pediatric infection varies from 0.05%-0.36% in the United States and Europe; up to 1.8%-5.8% in some developing countries. The highest prevalence occurs in Egypt, sub-Saharan Africa, Amazon basin and Mongolia. HCV has been present in some populations for several centuries, notably genotypes 1 and 2 in West Africa. Parenteral anti-schistosomal therapy practiced in the 1960s until the early 1980s had spread HCV infection throughout Egypt. Parenteral acquisition of HCV remains a major route for infection among Egyptian children. Insufficient screening of transfusions, unsterilized injection equipment and re-used needles and syringes continue to be major routes of HCV transmission in developing countries, whereas vertical transmission and adolescent high-risk behaviors (e.g., injection drug abuse) are the major routes in developed countries. The risk of vertical transmission from an infected mother to her unborn/newborn infant is approximately 5%. Early stages of HCV infection in children do not lead to marked impairment in the quality of life nor to cognitive, behavioral or emotional dysfunction; however, caregiver stress and family system strain may occur. HCV slowly progresses to serious complications as cirrhosis (1%-2%) and hepatocellular carcinoma (HCC) especially in the presence of risk factors as hemolytic anemias, obesity, treated malignancy, and concomitant human immune deficiency and/or hepatitis B virus co-infection. HCV vaccine remains elusive to date. Understanding the immune mechanisms in patients who successfully cleared the infection is essential for vaccine development. The pediatric standard of care treatment consists of pegylated interferon-α 2a or b plus ribavirin for 24-48 wk. The new oral direct acting antivirals, approved for adults, need further evaluation in children. Sustained

  2. Burden of pediatric hepatitis C

    PubMed Central

    El-Shabrawi, Mortada Hassan; Kamal, Naglaa Mohamed

    2013-01-01

    Hepatitis C virus (HCV) is a major health burden infecting 170-210 million people worldwide. Additional 3-4 millions are newly-infected annually. Prevalence of pediatric infection varies from 0.05%-0.36% in the United States and Europe; up to 1.8%-5.8% in some developing countries. The highest prevalence occurs in Egypt, sub-Saharan Africa, Amazon basin and Mongolia. HCV has been present in some populations for several centuries, notably genotypes 1 and 2 in West Africa. Parenteral anti-schistosomal therapy practiced in the 1960s until the early 1980s had spread HCV infection throughout Egypt. Parenteral acquisition of HCV remains a major route for infection among Egyptian children. Insufficient screening of transfusions, unsterilized injection equipment and re-used needles and syringes continue to be major routes of HCV transmission in developing countries, whereas vertical transmission and adolescent high-risk behaviors (e.g., injection drug abuse) are the major routes in developed countries. The risk of vertical transmission from an infected mother to her unborn/newborn infant is approximately 5%. Early stages of HCV infection in children do not lead to marked impairment in the quality of life nor to cognitive, behavioral or emotional dysfunction; however, caregiver stress and family system strain may occur. HCV slowly progresses to serious complications as cirrhosis (1%-2%) and hepatocellular carcinoma (HCC) especially in the presence of risk factors as hemolytic anemias, obesity, treated malignancy, and concomitant human immune deficiency and/or hepatitis B virus co-infection. HCV vaccine remains elusive to date. Understanding the immune mechanisms in patients who successfully cleared the infection is essential for vaccine development. The pediatric standard of care treatment consists of pegylated interferon-α 2a or b plus ribavirin for 24-48 wk. The new oral direct acting antivirals, approved for adults, need further evaluation in children. Sustained

  3. What Are the Caregiver's Rights?

    MedlinePlus

    ... Lifestyle + Risk Reduction Caregiving What Are the Caregiver’s Rights? Caring for someone you love after a heart ... to forget to take care of yourself. These rights will help you remember that you have a ...

  4. The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia.

    PubMed

    Sanders, Sara; Ott, Carol H; Kelber, Sheryl T; Noonan, Patricia

    2008-01-01

    An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimer's disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support. PMID:18958942

  5. Helping Dementia Caregivers Through Technology.

    PubMed

    Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret

    2016-04-01

    It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies.

  6. Helping Dementia Caregivers Through Technology.

    PubMed

    Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret

    2016-04-01

    It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies. PMID:27023296

  7. Entry and re-entry into informal care-giving over a 3-year prospective study among older people in Nairobi slums, Kenya.

    PubMed

    Chepngeno-Langat, Gloria

    2014-09-01

    This paper analyses data from a 3-year prospective study to understand the factors associated with becoming a caregiver to a person with a chronic illness and examines the dynamics among caregivers over time. A total of 1485 participants were drawn from a study conducted in the slums of Nairobi, Kenya. Two waves of data collected in 2006 for the baseline and a follow-up in 2009 were used. Information on the demographic, self-reported health and socioeconomic characteristics such as education, sources of livelihood and employment status was used. Age was a significant factor in becoming a caregiver, but there were no significant differences by gender or marital status. New caregivers and those with more than one care-giving episode had a higher socioeconomic position than non-caregivers. Caregivers also had poorer health compared with non-caregivers, highlighting the association between being a caregiver and negative health outcomes. Additionally, having cared for someone with a HIV-related illness compared with other chronic conditions increased the likelihood of subsequently caring for another person in need of long-term care. This may be due to the heterosexual mode of HIV transmission in sub-Saharan Africa, hence clustering of infection within family or married couples. This finding draws attention to the need to provide timely interventions to caregivers for people with HIV-related illness who are likely to end up providing care to multiple care recipients. Furthermore, there is a need to enhance the indispensable contribution of informal caregivers through incorporating their role within the continuum of care for effective HIV and AIDS management. Overall, informal caregivers to persons with chronic illnesses perform the tasks of care-giving without any formal support from health or social services. Therefore, it is crucial to initiate policies and programmes to ease the burden of care that is borne by informal caregivers.

  8. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups

    PubMed Central

    Aoun, Samar M.; Deas, Kathleen; Howting, Denise; Lee, Gabriel

    2015-01-01

    A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the

  9. Caregiver Depression and Youth Disruptive Behavior Difficulties

    PubMed Central

    Gopalan, Geetha; Dean-Assael, Kara; Klingenstein, Kathryn; Chacko, Anil; McKay, Mary M.

    2011-01-01

    This study examines the rates of depressive symptoms and service use among caregivers whose children receive treatment for disruptive behavior disorders. Descriptive analyses examined preliminary baseline data from the Family Groups for Urban Youth with Disruptive Behaviors study for 212 caregivers to determine rates of caregiver depressive symptoms and lifetime mental health service use. Findings indicate that caregivers manifest substantially higher rates of depressive symptoms compared to national norms. Of those caregivers with clinically significant depressive symptoms, less than half reported ever receiving mental health services. Findings suggest that greater attention should be paid to identifying and treating caregiver depression among children receiving treatment for disruptive behavior disorders. PMID:21278845

  10. Death representation of caregivers in hospice.

    PubMed

    Andruccioli, Jessica; Russo, Maria Maffia; Bruschi, Angela; Pedrabissi, Luigi; Sarti, Donatella; Monterubbianesi, Maria Cristina; Rossi, Sabina; Rocconi, Sabina; Raffaeli, William

    2012-11-01

    In this study, we investigated caregiver's death representation in hospice. The results presented here are a further analysis of the data collected in our previous study, concerning the evaluation of the caregiver in hospice. The data analysis of 24 caregivers of patients hospitalized in Rimini Hospice (Italy) underlined that caregivers avoiding death representation of the patient admitted to hospice had fewer protective factors (52.3%) and more risk factors (47.7%) than caregivers nonavoiding (66.5% and 33.5%, respectively). Caregivers avoiding death representation, moreover, experienced a greater distress (58%) than those nonavoiding (42%). PMID:22241459

  11. Framing the Public Health of Caregiving

    PubMed Central

    Talley, Ronda C.; Crews, John E.

    2007-01-01

    Caregiving has only recently been acknowledged by the nation as an important topic for millions of Americans. A psychological or sociological approach to care-giving services has been most often applied, with little attention to the population-based public health outcomes of caregivers. We conceptualize caregiving as an emerging public health issue involving complex and fluctuating roles. We contend that caregiving must be considered in the context of life span needs that vary according to the ages, developmental levels, mental health needs, and physical health demands of both caregivers and care recipients. PMID:17194871

  12. Attitudes and burden in relatives of patients with schizophrenia in a middle income country

    PubMed Central

    2011-01-01

    Background Most studies of family attitudes and burden have been conducted in developed countries. Thus it is important to test the generalizability of this research in other contexts where social conditions and extended family involvement may be different. The aim of this study was to assess the relationship between the attitudes of caregivers and the burden they experience in such a context, namely Arica, a town located in the northernmost region of Chile, close to the border with Peru and Bolivia. Methods We assessed attitudes towards schizophrenia (including affective, cognitive and behavioural components) and burden (including subjective distress, rejection and competence) in 41 main caregivers of patients with schizophrenia, all of whom were users of Public Mental Health Services in Arica. Results Attitude measures differed significantly according to socio-demographic variables, with parents (mainly mothers) exhibiting a more negative attitude towards the environment than the rest of the family (t = 4.04; p = 0.000).This was also the case for caregivers with a low educational level (t = 3.27; p < 0.003), for the oldest caregivers (r = 0.546; p = 0.000) and for those who had spent more time with the patient (r = 0.377; p = 0.015). Although attitudes had significant association with burden, their explanatory power was modest (R2 = .104, F = 4,55; p = .039). Conclusions Similar to finding developed countries, the current study revealed a positive and significant relationship between the attitudes of caregivers and their burden. These findings emphasize the need to support the families of patients with schizophrenia in this social context. PMID:21943329

  13. Factors that influence state policies for caregivers of patients with chronic kidney disease and how to impact them.

    PubMed

    Schrauf, Christine M

    2011-01-01

    When individuals with chronic kidney disease require ongoing assistance with activities of daily living and disease management, the consistent care provided by family caregivers often averts the need for institutional placement These caregivers may experience physical and mental burden when supports are not in place to provide occasional help and relief In some states, public programs have been developed to provide assistance to family caregivers, such as respite care, caregiver training, and tax credits. However, policies among the states are not consistent. This study identified factors that have influenced the development of family caregiver-friendly policies and programs in two study states, Connecticut and New Jersey. The case study method used in this research utilized data from informant interviews, document review, and observation of select meetings and hearings to identify 11 factors or themes that impacted public policy development benefiting family caregivers. Two primary factors, state fiscal environment/philosophy and advocacy, were found to be critical to the policymaking process. Based on these findings, specific measures are described that nephrology nurses can take to help influence adoption of policies benefiting caregivers. In addition, information to help caregivers access available programs through agencies, organizations, and informational Web sites is identified. PMID:22032000

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

    PubMed Central

    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

  15. Impact of a Community Based Implementation of REACH II Program for Caregivers of Alzheimer's Patients

    PubMed Central

    Lykens, Kristine; Moayad, Neda; Biswas, Swati; Reyes-Ortiz, Carlos; Singh, Karan P.

    2014-01-01

    Background In 2009 an estimated 5.3 million people in the United States were afflicted with Alzheimer's disease, a degenerative form of dementia. The impact of this disease is not limited to the patient but also has significant impact on the lives and health of their family caregivers. The Resources for Enhancing Alzheimer's Caregiver Health (REACH II) program was developed and tested in clinical studies. The REACH II program is now being delivered by community agencies in several locations. This study examines the impact of the REACH II program on caregiver lives and health in a city in north Texas. Study design Family caregivers of Alzheimer's patients were assessed using an instrument covering the multi-item domains of Caregiver Burden, Depression, Self-Care, and Social Support upon enrollment in the program and at the completion of the 6 month intervention. The domain scores were analyzed using a multivariate paired t-test and Bonferroni confidence interval for the differences in pre- and post-service domain scores. Results A total of 494 families were enrolled in the program during the period January 1, 2011 through June 30, 2012. Of these families 177 completed the 6 month program and have pre – and post service domain scores. The median age for the caregivers was 62 years. The domain scores for Depression and Caregiver Burden demonstrated statistically significant improvements upon program completion. Conclusion The REACH II intervention was successfully implemented by a community agency with comparable impacts to those of the clinical trial warranting wider scale implementation. PMID:24586664

  16. Are informal caregivers important in AIDS care?

    PubMed

    Decarlo, P; Folkman, S

    1997-01-01

    Informal caregivers of people with AIDS provide practical help and nursing care at home. They are often the lovers, spouses, friends, or family of someone with AIDS and are not professional care providers. They provide essential care, saving society considerable expense. Caregivers provide practical support such as shopping, housekeeping, and transportation to clinics, as well as basic assistance such as help with bathing, going to the bathroom, and feeding. As symptoms worsen, caregivers are also likely to adopt the more clinical roles of keeping track of medications, giving injections, inserting catheters, and cleaning wounds. Caregivers also often assess medical and mental conditions, being the first to notice changes in health and to decide when to seek help. Caregivers, however, can suffer considerable care-related stress, leading to numbness, compassion fatigue, or burnout. Caregivers may also fear social rejection, loss of job and/or housing and may therefore hide their caregiving status from family, friends, and co-workers. For women with HIV, being responsible for children at home may make it difficult or impossible to obtain caregiving support for themselves. Helping caregivers benefits both the caregiver and the patient. Professional clinicians can include the caregiver in the triad of care comprised of the doctor, caregiver, and patient. Participating in support groups can also help caregivers.

  17. Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

    PubMed

    Phillips, Charles D

    2016-01-01

    A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete.

  18. Coping strategies and socio-demographic characteristics among Jordanian caregivers of patients receiving hemodialysis.

    PubMed

    Alnazly, Eman

    2016-01-01

    Individuals who care for family members receiving chronic hemodialysis (HD) are likely to experience burdens that may adversely impact their patients. Effective coping strategies are shaped by various factors, including sociodemographic characteristics. To assess the relationship between caregivers and their patients, we studied 225 family-member caregivers of chronic HD patients through answering the Ways of Coping Questionnaire-Revised. Sociodemographic data, including caregiver age, gender, educational level, relationship to the patients, length of care time and weekly hours of caregiving were analyzed using the t-test, analysis of variance and least-significant difference post hoc test. Of the eight coping strategies investigated, seven were significantly related to at least one of the analyzed sociodemographic variables; these were confrontive coping, distancing, self-controlling, seeking social support, accepting responsibility, planful problem solving and positive reappraisal. The findings of the present study may be useful for administering dialysis by nurses for identifying coping strategies among caregivers and for establishing plans of care that would promote coping strategies in relation to the caregiver's sociodemographic characteristics.

  19. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    PubMed

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.

  20. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    PubMed

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia. PMID:25935206

  1. Parental caregivers of children with developmental disabilities mount a poor antibody response to pneumococcal vaccination.

    PubMed

    Gallagher, Stephen; Phillips, Anna C; Drayson, Mark T; Carroll, Douglas

    2009-03-01

    In older populations, caregiving for a spouse with dementia has been associated with a poor antibody response to vaccination. The present study examined whether younger caregivers, specifically the parents of children with developmental disabilities, would also show a diminished antibody response to vaccination. At baseline assessment, 30 parents of children with developmental disabilities and 29 parents of typically developing children completed standard measures of depression, perceived stress, social support, caregiver burden, and child problem behaviours. They also provided a blood sample and were then vaccinated with a pneumococcal polysaccharide vaccine. Further blood samples were taken at 1- and 6-month follow-ups. Caregivers mounted a poorer antibody response to vaccination than control parents at both follow-ups. This effect withstood adjustment for a number of possible confounders and appeared to be, at least in part, mediated by child problem behaviours. The negative impact of caregiving on antibody response to vaccination is not restricted to older spousal caregivers, but is also evident in younger parents caring for children with developmental disabilities. The behavioural characteristics of the care recipients may be a key consideration in whether or not immunity is compromised in this context.

  2. Female caregivers of stroke survivors: coping and adapting to a life that once was.

    PubMed

    Saban, Karen L; Hogan, Nancy S

    2012-02-01

    Despite the prevalence of women caring for stroke survivors, relatively little research has focused specifically on the experience and needs of informal female caregivers of stroke survivors. Therefore, the purpose of this study was to describe the experience of female caregivers who care for an adult family member who has experienced a stroke within the previous year using a qualitative methodology. A sample of 46 female caregivers of stroke survivors completed a demographic form and responded to open-ended written questions exploring their experiences as caregivers and how they coped with changes in their lives during the first year after the stroke. Four concepts emerged from the data: losing the life that once was, coping with daily burdens, creating a new normal, and interacting with healthcare providers. Findings suggest that female caregivers of stroke survivors grieve the life that they once shared with the stroke survivor and struggle to cope with multiple family and work demands while trying their best to interact with healthcare providers to attain the best possible care for their loved ones. Recognizing the unique challenges of female caregivers of stroke survivors may help nurses provide better support and resources to meet their needs.

  3. Coping strategies and socio-demographic characteristics among Jordanian caregivers of patients receiving hemodialysis.

    PubMed

    Alnazly, Eman

    2016-01-01

    Individuals who care for family members receiving chronic hemodialysis (HD) are likely to experience burdens that may adversely impact their patients. Effective coping strategies are shaped by various factors, including sociodemographic characteristics. To assess the relationship between caregivers and their patients, we studied 225 family-member caregivers of chronic HD patients through answering the Ways of Coping Questionnaire-Revised. Sociodemographic data, including caregiver age, gender, educational level, relationship to the patients, length of care time and weekly hours of caregiving were analyzed using the t-test, analysis of variance and least-significant difference post hoc test. Of the eight coping strategies investigated, seven were significantly related to at least one of the analyzed sociodemographic variables; these were confrontive coping, distancing, self-controlling, seeking social support, accepting responsibility, planful problem solving and positive reappraisal. The findings of the present study may be useful for administering dialysis by nurses for identifying coping strategies among caregivers and for establishing plans of care that would promote coping strategies in relation to the caregiver's sociodemographic characteristics. PMID:26787574

  4. Dental Care Every Day: A Caregiver's Guide

    MedlinePlus

    ... Every Day: A Caregiver's Guide Dental Care Every Day: A Caregiver's Guide Main Content Getting Started Three ... regularly. Back to Top Step 1. Brush Every Day Angle the brush at the gumline and brush ...

  5. Caregiving and Sibling Relationships: Challenges and Opportunities

    MedlinePlus

    ... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...

  6. Hands-On Skills for Caregivers

    MedlinePlus

    ... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...

  7. Caregivers - Multiple Languages: MedlinePlus

    MedlinePlus

    ... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Caregivers URL of this page: https://medlineplus.gov/languages/caregivers.html Other topics A-Z A B ...

  8. Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

    ERIC Educational Resources Information Center

    Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

    2008-01-01

    Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

  9. Informal caregiving for cancer patients.

    PubMed

    Romito, Francesca; Goldzweig, Gil; Cormio, Claudia; Hagedoorn, Mariët; Andersen, Barbara L

    2013-06-01

    According to the recent worldwide estimation by the GLOBOCAN project, in total, 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008. The worldwide number of cancer survivors within 5 years of diagnosis has been estimated at be almost 28.8 million. Informal caregivers, such as family members and close friends, provide essential support to cancer patients. The authors of this report provide an overview of issues in the study of informal caregivers for cancer patients and long-term survivors in the United States and Europe, characterizing the caregivers commonly studied; the resources currently available to them; and their unmet needs, their psychosocial outcomes, and the psychosocial interventions tailored to their special circumstances. A broad overview of the state of research and knowledge, both in Europe and the United States, and observations on the directions for future research are provided.

  10. Informal Caregiving for Cancer Patients

    PubMed Central

    Romito, Francesca; Goldzweig, Gil; Cormio, Claudia; Hagedoorn, Mariët; Andersen, Barbara L.

    2013-01-01

    According to the recent worldwide estimation by the GLOBOCAN project, in total, 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008. The worldwide number of cancer survivors within 5 years of diagnosis has been estimated at be almost 28.8 million. Informal caregivers, such as family members and close friends, provide essential support to cancer patients. The authors of this report provide an overview of issues in the study of informal caregivers for cancer patients and long-term survivors in the United States and Europe, characterizing the caregivers commonly studied; the resources currently available to them; and their unmet needs, their psychosocial outcomes, and the psychosocial interventions tailored to their special circumstances. A broad overview of the state of research and knowledge, both in Europe and the United States, and observations on the directions for future research are provided. PMID:23695928

  11. Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation.

    PubMed

    Bevans, Margaret F; Ross, Alyson; Wehrlen, Leslie; Klagholz, Stephen D; Yang, Li; Childs, Richard; Flynn, Sharon L; Remaley, Alan T; Krumlauf, Michael; Reger, Robert N; Wallen, Gwenyth R; Shamburek, Robert; Pacak, Karel

    2016-01-01

    There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p < 0.001) with effect sizes (ES) ranging from 1.37 to 1.80 and they did not change over time (p > 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted. PMID

  12. Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation.

    PubMed

    Bevans, Margaret F; Ross, Alyson; Wehrlen, Leslie; Klagholz, Stephen D; Yang, Li; Childs, Richard; Flynn, Sharon L; Remaley, Alan T; Krumlauf, Michael; Reger, Robert N; Wallen, Gwenyth R; Shamburek, Robert; Pacak, Karel

    2016-01-01

    There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p < 0.001) with effect sizes (ES) ranging from 1.37 to 1.80 and they did not change over time (p > 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted.

  13. Impact of home care management on the involvement of informal caregivers by formal caregivers.

    PubMed

    van Wieringen, Marieke; Broese van Groenou, Marjolein I; Groenewegen, Peter

    2015-01-01

    This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.

  14. Global economic burden of schizophrenia: a systematic review

    PubMed Central

    Chong, Huey Yi; Teoh, Siew Li; Wu, David Bin-Chia; Kotirum, Surachai; Chiou, Chiun-Fang; Chaiyakunapruk, Nathorn

    2016-01-01

    Background Schizophrenia is one of the top 25 leading causes of disability worldwide in 2013. Despite its low prevalence, its health, social, and economic burden has been tremendous, not only for patients but also for families, caregivers, and the wider society. The magnitude of disease burden investigated in an economic burden study is an important source to policymakers in decision making. This study aims to systematically identify studies focusing on the economic burden of schizophrenia, describe the methods and data sources used, and summarize the findings of economic burden of schizophrenia. Methods A systematic review was performed for economic burden studies in schizophrenia using four electronic databases (Medline, EMBASE, PsycINFO, and EconLit) from inception to August 31, 2014. Results A total of 56 articles were included in this review. More than 80% of the studies were conducted in high-income countries. Most studies had undertaken a retrospective- and prevalence-based study design. The bottom-up approach was commonly employed to determine cost, while human capital method was used for indirect cost estimation. Database and literature were the most commonly used data sources in cost estimation in high-income countries, while chart review and interview were the main data sources in low and middle-income countries. Annual costs for the schizophrenia population in the country ranged from US$94 million to US$102 billion. Indirect costs contributed to 50%–85% of the total costs associated with schizophrenia. The economic burden of schizophrenia was estimated to range from 0.02% to 1.65% of the gross domestic product. Conclusion The enormous economic burden in schizophrenia is suggestive of the inadequate provision of health care services to these patients. An informed decision is achievable with the increasing recognition among public and policymakers that schizophrenia is burdensome. This results in better resource allocation and the development of policy

  15. Taking care of one's own: justice and family caregiving.

    PubMed

    Jecker, Nancy S

    2002-01-01

    This paper asks whether adult children have a duty of justice to act as caregivers for their frail, elderly parents. I begin (Sections I. and II.) by locating the historical reasons why relationships within families were not thought to raise issues of justice. I argue that these reasons are misguided. The paper next presents specific examples showing the relevance of justice to family relationships. I point out that in the United States today, the burden of caregiving for dependent parents falls disproportionately on women (Sections III. and IV.). The paper goes on to use Rawls' theoretical tool of the veil of ignorance to argue that caring for parents should not be linked to a person's sex and more generally, that there is no duty of justice to assume the role of caregiver for dependent parents (Sections V.). Although justice does not provide the moral foundations for parent care, I show that it nonetheless places important limits on the instinct to care. I conclude that the voice of justice should be audible, and is intrinsically present, within families.

  16. Supporting family caregivers at the end of life: "they don't know what they don't know".

    PubMed

    Rabow, Michael W; Hauser, Joshua M; Adams, Jocelia

    2004-01-28

    Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

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

    PubMed Central

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

    2015-01-01

    Background. 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. Methods. 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. Results. 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). Conclusions. 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. PMID:25878033

  18. Organizing and Leading Caregiver Support Groups.

    ERIC Educational Resources Information Center

    Scharlach, Andrew E.

    This guide was designed to help individuals interested in developing caregiver support groups. It begins with an overview of the caregiving situation, identifying stresses associated with caregiving and factors which have been shown to moderate stress. Purposes of a support group are discussed; differences between support and therapy groups are…

  19. Family Caregiver Identity: A Literature Review

    ERIC Educational Resources Information Center

    Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

    2015-01-01

    Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…

  20. Changes in Adult Child Caregiver Networks

    ERIC Educational Resources Information Center

    Szinovacz, Maximiliane E.; Davey, Adam

    2007-01-01

    Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…

  1. Caregiver Health and Safety, Beginnings Workshop.

    ERIC Educational Resources Information Center

    Aronson, Susan S.; Rafanello, Donna; Wortman, Alicia M.; Buffin, Lilli-ann; Albrecht, Kay

    2001-01-01

    Presents five articles on health and safety of caregivers: (1) "Taking Care of Caregivers: Wellness for Every Body" (Aronson); (2) "Caregiver Mental Health" (Aronson); (3) "Show and Tell: Modeling Healthy Behaviors and Attitudes" (Rafanello); (4) "Preventing Work-Related Musculoskeletal Injuries" (Wortman); and (5) "It Is No Small Thing" (Buffin).…

  2. Medically Complex Home Care and Caregiver Strain

    ERIC Educational Resources Information Center

    Moorman, Sara M.; Macdonald, Cameron

    2013-01-01

    Purpose of the study: To examine (a) whether the content of caregiving tasks (i.e., nursing vs. personal care) contributes to variation in caregivers' strain and (b) whether the level of complexity of nursing tasks contributes to variation in strain among caregivers providing help with such tasks. Design and methods: The data came from the Cash…

  3. Family Caregivers: Psychosocial Impacts and Clinical Needs

    ERIC Educational Resources Information Center

    Daire, Andrew P.; Torres, Jennifer; Edwards, Nivischi N.

    2009-01-01

    The authors describe how 3 groups of family caregivers (spouses, daughters, and sons) are affected by the caregiving role. In addition, clinical considerations and interventions for mental health professionals working with these different groups of family caregivers are discussed. A clinical case example is also presented. (Contains 2 tables.)

  4. Association of depressive symptomatology with receipt of informal caregiving among older American Indians: The Native Elder Care Study

    PubMed Central

    Goins, R. Turner

    2014-01-01

    Objectives Our study objectives were to identify the primary sources of informal caregiving and to examine the association of depressive symptomatology with receipt of informal caregiving among a sample of community-dwelling older American Indians. Design We conducted a cross-sectional study of older American Indians. Participants Community-dwelling adults aged ≥55 years who are members of a federally recognized American Indian tribe in the Southeast U.S. Measurements We collected information on the participant’s primary caregiver, number of informal care hours received in the past week, depressive symptomatology, demographic characteristics, physical health status, and assistance need. Results Daughters, spouses, and sons were the most common informal primary caregivers with distinct differences by sex of those receiving care. Compared to participants with lower levels, those with a high level of depressive symptomatology received substantially greater hours of informal care (33.4 vs. 11.5 hours per week). Conclusions Older American Indians with higher levels of depressive symptomatology received more informal caregiving than those with lower depressive symptomatology. The burden of caregiving of older adults is primarily shouldered by spouses and children with those who care for older adults with depressive symptomatology likely experiencing an even greater burden of care. PMID:24801609

  5. Caring for Children With Tuberous Sclerosis Complex: What Is the Physical and Mental Health Impact on Caregivers?

    PubMed

    Rentz, Anne M; Skalicky, Anne M; Pashos, Chris L; Liu, Zhimei; Magestro, Matthew; Pelletier, Corey L; Prestifilippo, Judith A; Nakagawa, JoAnne; Frost, Michael D; Dunn, David W; Wheless, James W

    2015-10-01

    Disease burden associated with tuberous sclerosis complex, a genetic disorder characterized by benign tumor growth including lesions in multiple organs, puts tremendous demands on families. This analysis examines the physical and mental health burden of tuberous sclerosis complex caregivers in the United States. An institutional review board-approved web-based survey of tuberous sclerosis complex caregivers collected information; descriptive analyses were conducted on age-based subgroups. A total of 275 caregivers of tuberous sclerosis complex patients responded. Mean patient age ≤ 18 years was 6.9 (±4.4) and 42.3 (±18.2) for patients >18 years of age. Caregivers reported multiple tuberous sclerosis complex manifestations and high health care utilization for patients. Caregivers spending more time on doctor visits or researching tuberous sclerosis complex had lower physical and mental health-related quality of life scores and more depressive symptoms. Tuberous sclerosis complex caregivers had significantly lower physical and mental health-related quality of life scores and more depressive symptomatology compared to US healthy adult population norms.

  6. Translation of a Dementia Caregiver Intervention for Delivery in Homecare as a Reimbursable Medicare Service: Outcomes and Lessons Learned

    ERIC Educational Resources Information Center

    Gitlin, Laura N.; Jacobs, Mimi; Earland, Tracey Vause

    2010-01-01

    Purpose: Families of dementia patients receiving skilled homecare do not receive supportive services. We evaluated whether a proven intervention, Environmental Skill-building Program (ESP), which reduces caregiver burden and enhances skills managing patient functioning, can be integrated into homecare practices of occupational therapists (OTs) and…

  7. [Grieving among relatives and caregivers].

    PubMed

    Pascual, Angel María; Santamaría, Juan Luis

    2009-11-01

    This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur.

  8. [Alzheimer's disease, caregiving and frailty].

    PubMed

    de Peretti, Eva; Villars, Hélène

    2015-01-01

    Caring for a person with Alzheimer's disease often sees the elderly carer at risk of succumbing to frailty. The chronic stress which comes with this caregiving can lead to physical and emotional exhaustion, for which the physiological reserves of the ageing person may be insufficient. The concept of frailty may help to improve the understanding of this vulnerability.

  9. Pediatric Disability and Caregiver Separation

    ERIC Educational Resources Information Center

    McCoyd, Judith L. M.; Akincigil, Ayse; Paek, Eun Kwang

    2010-01-01

    The evidence that the birth of a child with a disability leads to divorce or separation is equivocal, with the majority of recent research suggesting that such a birth and childrearing may be stressful, but not necessarily toxic, to the caregiver relationship. Such research has been limited by small sample sizes and nonrepresentative samples and…

  10. Everyday Exercise for Healthy Caregivers

    ERIC Educational Resources Information Center

    Sull, Theresa M.

    2005-01-01

    Caring for young children is physically and emotionally demanding, but both parents and teachers experience great satisfaction when they help children develop in healthy ways. Wise caregivers know that they must keep themselves healthy as well, by including exercise in their daily routine. A trip to the gym does not always fit into a schedule…

  11. Socioeconomic burden of hereditary angioedema: results from the hereditary angioedema burden of illness study in Europe

    PubMed Central

    2014-01-01

    Background Hereditary angioedema (HAE) due to C1 inhibitor deficiency is a rare but serious and potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The study objective was to characterize direct and indirect resource utilization associated with HAE from the patient perspective in Europe. Methods The study was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE via a cross-sectional survey of HAE patients, including direct and indirect resource utilization during and between attacks for patients and their caregivers over the past 6 months. A regression model examined predictors of medical resource utilization. Results Overall, 164 patients had an attack in the past 6 months and were included in the analysis. The most significant predictor of medical resource utilization was the severity of the last attack (OR 2.6; p < 0.001). Among patients who sought medical care during the last attack (23%), more than half utilized the emergency department. The last attack prevented patients from their normal activities an average of 4–12 hours. Patient and caregiver absenteeism increased with attack severity and frequency. Among patients who were working or in school (n = 120), 72 provided work/school absenteeism data, resulting in an estimated 20 days missing from work/school on average per year; 51% (n = 84) indicated that HAE has hindered their career/educational advancement. Conclusion HAE poses a considerable burden on patients and their families in terms of direct medical costs and indirect costs related to lost productivity. This burden is substantial at the time of attacks and in between attacks. PMID:24996814

  12. Navigating patients and caregivers through the course of Alzheimer's disease.

    PubMed

    Aupperle, Peter M

    2006-01-01

    Alzheimer's disease (AD) prevalence rates in the United States are expected to triple over the next 50 years, a consequence of the overall aging of the U.S. population. Because of the profound and far-reaching impact of AD, this projected increase in prevalence is expected to pose a tremendous challenge. Alzheimer's disease results in the cognitive and functional deterioration of the affected patient, and behavioral disturbances frequently accompany the disease. Furthermore, because of its progressive and debilitating nature, AD takes a dramatic emotional, physical, and financial toll on the patient's primary caregiver. Nonetheless, despite the burden experienced by both patients and caregivers, strategies for minimizing the negative consequences of AD are well characterized. Central to the successful management of AD is the prompt and accurate diagnosis of the disease, with current guidelines calling for a 2-tiered approach in which patients first undergo screening using a brief cognitive assessment tool, followed by a comprehensive battery of physical, psychological, and neurologic tests if signs of possible cognitive impairment are evident upon screening. Once a conclusive diagnosis of AD has been made, the development of a disease management approach targeting the needs of the patient and his or her caregiver becomes a primary concern. Pharmacologic interventions may play an important role in such approaches, as agents such as cholinesterase inhibitors and the N-methyl-D-aspartate receptor antagonist memantine have been associated with favorable outcomes for patients and caregivers alike. However, in addition to the therapeutic benefits of these agents, associated side effects and potential drug-drug interactions must also factor into decisions regarding the pharmacologic treatment of AD.

  13. Anger expression and natural killer cell activity in family caregivers participating in a physical activity trial.

    PubMed

    Wilcox, S; King, A C; Vitaliano, P P; Brassington, G S

    2000-07-01

    Associations between psychological functioning and natural killer cell activity (NKA) were examined in 23 older (62.2 ± 7.5 years) family caregivers randomized to a moderate intensity four-month exercise program or to a wait-list control condition. At baseline, although NKA was related to anger-control (r = -.42; trend p < .06) and anger-out (r = .50; p < .03), it was not related to depression, anxiety, perceived stress, or caregiver burden. After controlling for baseline NKA, changes in anger-control explained 14 percent of the variance in NKA four months later. Decreases in anger-control predicted increases in NKA. Group assignment (exercise vs control) was unrelated to changes in NKA over the four-month period; however, the study was not powered to detect this effect. These results are consistent with reported relationships of anger expression with other physiological measures, and extend the importance of anger expression to immune functioning in older family caregivers.

  14. “It just consumes your life”: Quality of Life for Informal Caregivers of Diverse Older Adults with Late-Life Disability

    PubMed Central

    Thai, Julie N.; Barnhart, Caroline E.; Cagle, John; Smith, Alexander K.

    2015-01-01

    Objective for the study Our objective was to generate hypotheses about factors affecting QoL assessments for informal caregivers of diverse older adults 65+ with late-life disability. Results Overall, 52% of caregivers experienced a decline in QoL. Factors affecting caregivers’ QoL were grouped into 4 domains: social, emotional, physical and financial. Factors associated with decreased QoL were less time for self, competing financial demands, and the physical and emotional impact of the patient’s illness. Factors associated with no change in QoL were minimal caregiving responsibilities, a sense of filial duty, and QoL being consistently poor over time. Factors associated with improved QoL were perceived rewards in caregiving, receiving institutional help, and increased experience. Chinese caregivers were more likely to cite filial duty as their motivator for continued caregiving than were Caucasian caregivers. Conclusion Informal caregivers take on a huge burden in enabling older adults to age in the community. These caregivers need more support in maintaining their QoL. PMID:25948041

  15. Family caregiver challenges in dementia care in Australia and China: a critical perspective

    PubMed Central

    2014-01-01

    Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like

  16. Are there sex differences in emotional and biological responses in spousal caregivers of patients with Alzheimer's disease?

    PubMed

    Thompson, Russel L; Lewis, Sharon L; Murphy, Margaret R; Hale, Jennifer M; Blackwell, Paula H; Acton, Gayle J; Clough, Dorothy H; Patrick, Graham J; Bonner, Peter N

    2004-04-01

    The purpose of this study was to compare emotional and biological responses of men and women who are spousal caregivers of patients with Alzheimer's disease (AD). Quality-of-life measurements, bioinstrumentation data, and immunophenotype assessments were obtained from female and male spousal caregivers of patients with AD. Spousal caregivers (women, n = 45 with average age 69.7; men, n = 16 with average age 71.4 years) completed questionnaires that assessed psychosocial variables. Blood was drawn and lymphocyte subsets (including natural killer [NK] cell number) were determined using flow cytometry. The degree of relaxation was determined measuring muscle tension (EMG) in the frontalis and trapezius muscles, skin conductance, skin temperature, and heart rate. Male spousal caregivers, as compared to female spousal caregivers, had significantly lower levels of stress, depression, caregiver burden (subjective), anxiety, anger-hostility, and somatic symptoms and higher levels of mental health, sense of coherence, NK cell number, and social and physical functioning. There were no statistically significant differences between the 2 groups in social support, coping resources, or T, T suppressor, or activated T cells. Women had more T helper cells and fewer NK cells than men. Men had fewer manifestations of a physiological stress response, as indicated by bioinstrumentation parameters. Unique sex-specific issues need to be considered when strategies are implemented to assist the increasing number of caregivers as our society ages.

  17. Caregivers' attentional bias to pain: does it affect caregiver accuracy in detecting patient pain behaviors?

    PubMed

    Mohammadi, Somayyeh; Dehghani, Mohsen; Khatibi, Ali; Sanderman, Robbert; Hagedoorn, Mariët

    2015-01-01

    Attentional bias to pain among family caregivers of patients with pain may enhance the detection of pain behaviors in patients. However, both relatively high and low levels of attentional bias may increase disagreement between patients and caregivers in reporting pain behaviors. This study aims to provide further evidence for the presence of attentional bias to pain among family caregivers, to examine the association between caregivers' attentional bias to pain and detecting pain behaviors, and test whether caregivers' attentional bias to pain is curvilinearly related to patient and caregiver disagreement in reporting pain behaviors. The sample consisted of 96 caregivers, 94 patients with chronic pain, and 42 control participants. Caregivers and controls completed a dot-probe task assessing attention to painful and happy stimuli. Both patients and caregivers completed a checklist assessing patients' pain behavior. Although caregivers did not respond faster to pain congruent than pain incongruent trials, caregiver responses were slower in pain incongruent trials compared with happy incongruent trials. Caregivers showed more bias toward pain faces than happy faces, whereas control participants showed more bias toward happy faces than pain faces. Importantly, caregivers' attentional bias to pain was significantly positively associated with reporting pain behaviors in patients above and beyond pain severity. It is reassuring that attentional bias to pain was not related to disagreement between patients and caregivers in reporting pain behaviors. In other words, attentional bias does not seem to cause overestimation of pain signals.

  18. The caregiving bind: concealing the demands of informal care can undermine the caregiving identity.

    PubMed

    Moore, Helen; Gillespie, Alex

    2014-09-01

    Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The 'caregiving bind' is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition. PMID:24996218

  19. Worldwide burden of diabetes

    PubMed Central

    Bhutani, Jaikrit; Bhutani, Sukriti

    2014-01-01

    Diabetes is a pandemic of major public health importance cannot be disputed. While the IDF data does emphasis the importance of diabetes as a global public health problem, it does not place in perspective the ranking of diabetes as compared to other diseases and illnesses. The GBD data highlight this fact in multiple ways. The disease and its complications or comorbid conditions rank high in the list of risk factors, and causes of death. This communication describes the global burden of diabetes especially south-east Asia and the statistical sequelae of the disease. PMID:25364686

  20. Burnout and Psychiatric Distress in Local Caregivers Two Years After the 2011 Great East Japan Earthquake and Fukushima Nuclear Radiation Disaster.

    PubMed

    Fujitani, Kenji; Carroll, Matt; Yanagisawa, Robert; Katz, Craig

    2016-01-01

    The 2011 Great East Japan Earthquake precipitated a triple disaster of earthquake, tsunami and nuclear radiation disaster. To quantify the prevalence of burnout and psychiatric distress in local healthcare providers (caregivers) more than 2 years after the disaster, this study surveyed caregivers from affected areas through interviews about topics of concerns and two questionnaires: Maslach Burnout Inventory and General Health Questionnaire. Concerns listed by respondents were primarily radiation related: additional stress, concern for children, concern for local food, and sleep difficulties. We found significant number of caregivers to have signs of emotional exhaustion, low personal accomplishment, and psychological distress. Our findings suggest that local caregivers are experiencing substantial mental health burdens, which have unfortunately remained static from the year prior, even 2 years after the fact. Therefore, long term psychological support and improvement in caregiver work conditions are essential to maintain sustainable care in rebuilding disaster stricken areas.

  1. [Informal caregivers of elderly people in South Tyrol. A qualitative assessment of home care situation].

    PubMed

    Ausserhofer, Dietmar; Mantovan, Franco; Innerhofer, Esther; Götsch, Ingrid; Ploner, Elfriede; Them, Christa

    2009-11-01

    Within the framework of a pilot project in the sanitary district of Bruneck (sanitary establishment of South Tyrol), the concept of care management is being investigated both practically and scientifically for informal caregivers of elderly people in need of care since 2009 the results of the qualitative assessment of the homecare situation. The assessment before the intervention will form the basis for further design and implementation of individual stress-reducing and supportive offers for the informal caregivers. Using a semi structured interview guideline twelve problem-centered interviews with informal caregivers were conducted and analysed according to Mayring's content analysis technique (2007). Informal caregivers are exposed to burdens in social, physical and mental areas. Own resources, family ties and support reduce stress and burdens caused by the homecare situation. The need of individual and continuous support of families and implications for further measures of care management can be deduced from the results. There is a need of support in the areas coping strategies, empowerment and direct stress reduction with regard to the homecare situation through education, training, counselling and the interconnection of social and health services.

  2. Perceived stigma of patients with severe mental illness in Hong Kong: relationships with patients' psychosocial conditions and attitudes of family caregivers and health professionals.

    PubMed

    Chien, Wai-Tong; Yeung, Frederick K K; Chan, Alan H L

    2014-03-01

    This descriptive survey investigated the level of perceived stigma among Chinese patients with severe mental illness (SMI) and its relationships with patients' psychosocial conditions and family caregivers' and mental health professionals' attitudes toward SMI in Hong Kong. A clustered, random sample of 311 patients and their family caregivers and 73 Chinese professionals participated. The patients reported a high level of withdrawal/secrecy and the professionals perceived a low to moderate level of stereotype/restriction to their patients. Families' expressed emotion and caregiving burden could increase patients' perceived stigma. Strategies in de-stigmatization of mental illness have been discussed, particularly from family-based approach.

  3. Psychological distress, perceived stigma, and coping among caregivers of patients with schizophrenia

    PubMed Central

    Ong, Hui Chien; Ibrahim, Norhayati; Wahab, Suzaily

    2016-01-01

    Nowadays, family members are gradually taking on the role of full-time caregivers for patients suffering from schizophrenia. The increasing burden and tasks of caretaking can cause them psychological distress such as depression or anxiety. The aim of this study was to measure the correlation between perceived stigma and coping, and psychological distress as well as determine the predictors of psychological distress among the caregivers. Results showed that 31.5% of the caregivers experienced psychological distress. “Community rejection” was found to be positively associated with psychological distress. In case of coping subscales, psychological distress had a positive correlation with substance use, use of emotional support, behavioral disengagement, venting, and self-blame, while it was negatively correlated with “positive reframing”. Behavioral disengagement was the best predictor of psychological distress among caregivers of patients with schizophrenia, followed by positive reframing, use of emotional support, self-blame, and venting. Health practitioners can use adaptive coping strategies instead of maladaptive for caregivers to help ease their distress and prevent further deterioration of psychological disorders. PMID:27574475

  4. Psychological distress, perceived stigma, and coping among caregivers of patients with schizophrenia.

    PubMed

    Ong, Hui Chien; Ibrahim, Norhayati; Wahab, Suzaily

    2016-01-01

    Nowadays, family members are gradually taking on the role of full-time caregivers for patients suffering from schizophrenia. The increasing burden and tasks of caretaking can cause them psychological distress such as depression or anxiety. The aim of this study was to measure the correlation between perceived stigma and coping, and psychological distress as well as determine the predictors of psychological distress among the caregivers. Results showed that 31.5% of the caregivers experienced psychological distress. "Community rejection" was found to be positively associated with psychological distress. In case of coping subscales, psychological distress had a positive correlation with substance use, use of emotional support, behavioral disengagement, venting, and self-blame, while it was negatively correlated with "positive reframing". Behavioral disengagement was the best predictor of psychological distress among caregivers of patients with schizophrenia, followed by positive reframing, use of emotional support, self-blame, and venting. Health practitioners can use adaptive coping strategies instead of maladaptive for caregivers to help ease their distress and prevent further deterioration of psychological disorders. PMID:27574475

  5. Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China.

    PubMed

    Cui, J; Song, L J; Zhou, L J; Meng, H; Zhao, J J

    2014-07-01

    It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was 'knowledge about the disease and treatment' (4.37), and that with the lowest score named 'support on funeral' (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.

  6. [Can the new technologies of telemedicine applied to health help the caregiver?].

    PubMed

    Bernocchi, P; Comini, L; Rocchi, S; Bruletti, G; Scalvini, S

    2008-01-01

    During the last few years about the chronic patient assistance the tendency is to privilege the home care model, favouring the permanence of the patient in the familiar nucleus. This determines an always greater involvement in term of time and responsibility of the caregiver that is of the person who takes cure of the patient one worrying itself to answer to its physical needs, psychical and social. The burden of the family caregiver is in the consisting majority of the cases rather. The caregiver is therefore, with full rights, the other protagonist of the disease and it must be necessarily integrated in the assistance plan. The increase of the age associated to an increase of the prevalence of chronic pathologies, determines the necessity to plan new interventions on the territory. In chronic patients alternative assistance models, using telemedicine, seem to be effectives improving both clinical aspects and quality of the life. A new area of interest is delineated therefore that, through the new technologies of the ICT must define been involved the single roles of the operating ones in the participation program. The telemedicine seems to be a useful instrument in order to support patient and caregiver in facing the disease and reducing stress. In our model of domiciliary telesurveillance the patient, the caregiver, the family and all the sanitary figures are been involved. This model integrating the service dedicated to chronic pathology with telepsychology at home seems to give good result even if ulterior studies, above all in the long term, are need.

  7. Nursing support of family caregivers.

    PubMed

    Brackley, M H; Meadows, R F

    1989-01-01

    The relationship between caregiver and elder is a unique one. It cannot be compared to a mother-infant dyad; there is no role reversal. Family caregiving is undertaken out of a sense of filial obligation on the family's part coupled with the needs of the elderly person. The relationship that emerges is based on the dependency of one adult on another and is functional for the family and for society at large. We need families to continue to care for their elderly members at home and families need us to insure their survival. We must constantly be aware that care needs increase over the years, whereas family resources do not. Nursing by its very nature is tied to insuring that families are given the guidance and assistance with which to meet these needs. PMID:2789693

  8. Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program.

    PubMed

    Frey, P; Stinson, T; Siston, A; Knight, S J; Ferdman, E; Traynor, A; O'Gara, K; Rademaker, A; Bennett, C; Winter, J N

    2002-12-01

    Our goal was to compare direct and indirect medical costs and quality of life associated with inpatient vs outpatient autologous hematopoietic stem cell transplantation (AuHSCT). Twenty-one sequential outpatients and 26 inpatients were enrolled on this prospective trial. All candidates for AuHSCT were screened for eligibility for outpatient transplantation. Patients with either breast cancer or hematologic malignancy, insurance coverage for the outpatient procedure, one to three caregivers available to provide 24 h coverage, and no significant comorbidities were eligible to participate. Patients without caregivers or insurance coverage for outpatient transplant were accrued to the study in a consecutive manner as inpatient controls, based on willingness to participate in the quality of life portion of the study and to permit review of their hospital and billing records. Approximately half of all 139 prospective outpatient candidates were ineligible because they lacked a caregiver. Most commonly, the patient without a caregiver was single or widowed or their family and friends were needed to provide childcare. Most caregivers were college educated from families with incomes greater than US dollars 80000. Indirect costs to the caregivers totaled a median of US dollars 2520 (range US dollars 684-US dollars 4508), with the majority attributed to lost 'opportunity costs'. Overall, there were significant differences in the total costs of treatment for inpatient vs outpatient AuHSCT (US dollars 40985 vs US dollars 29210, P < 0.01)). In general, no significant differences were detected between inpatient and outpatient scores on quality of life measures. Although significant cost savings were associated with outpatient transplantation, this approach was applicable to only half of our otherwise eligible candidates because of a lack of caregivers. The financial burden associated with the caretaking role may underlie this finding.

  9. Caregivers' Distress: Youth with Attention-Deficit/Hyperactivity Disorder and Comorbid Disorders Assessed via Telemental Health

    PubMed Central

    Violette, Heather; Stoep, Ann Vander; Grover, Sarah; Myers, Kathleen

    2013-01-01

    Abstract Objective This article evaluates the additive effects of children's comorbid conditions with attention-deficit/hyperactivity disorder (ADHD) in relation to caregivers' distress, in a clinical trial conducted through telemental health (TMH). Methods The Children's ADHD Telemental Health Treatment Study (CATTS) is examining the effectiveness of treatment delivered via TMH for children with ADHD who are living in underserved communities. The CATTS trial recruited 223 children (μ=9.53±2.06 years) and their caregivers. Diagnoses of ADHD and comorbid oppositional defiant disorder (ODD) and anxiety disorders (ADs) were established with the Child Behavior Checklist and the Computerized Diagnostic Interview Schedule for Children. We took advantage of rich baseline data from the CATTS trial to investigate associations between caregivers' distress and children's comorbid mental health conditions. Caregivers' distress was assessed with the Patient Health Questionnaire-9, Parenting Stress Index, and Caregiver Strain Questionnaire. ANOVAs were used to compare children with ADHD alone with children having one comorbid condition (ODD or ADs) and children having two comorbid conditions (ODD and ADs). Results Three quarters (75.3%) of participants met criteria for ODD and/or AD comorbid with ADHD: 24.7% had neither comorbidity; 47.5% had ODD or AD; and 27.8% had both ODD and AD comorbidities. The parents of children with multiple comorbid conditions experienced the highest levels of depression, stress, and burden of care. Conclusions The CATTS sample that was recruited from underserved communities provided evidence of additive effects of child psychiatric comorbidities with caregivers' distress, echoing earlier findings from the Multi-modal Treatment of ADHD (MTA) study that was conducted with a metropolitan sample of youth. Results indicate that caregivers' distress should be addressed in developing treatment models for children with ADHD. Clinical Trials Registry http

  10. Autonomous caregiver following robotic wheelchair

    NASA Astrophysics Data System (ADS)

    Ratnam, E. Venkata; Sivaramalingam, Sethurajan; Vignesh, A. Sri; Vasanth, Elanthendral; Joans, S. Mary

    2011-12-01

    In the last decade, a variety of robotic/intelligent wheelchairs have been proposed to meet the need in aging society. Their main research topics are autonomous functions such as moving toward some goals while avoiding obstacles, or user-friendly interfaces. Although it is desirable for wheelchair users to go out alone, caregivers often accompany them. Therefore we have to consider not only autonomous functions and user interfaces but also how to reduce caregivers' load and support their activities in a communication aspect. From this point of view, we have proposed a robotic wheelchair moving with a caregiver side by side based on the MATLAB process. In this project we discussing about robotic wheel chair to follow a caregiver by using a microcontroller, Ultrasonic sensor, keypad, Motor drivers to operate robot. Using camera interfaced with the DM6437 (Davinci Code Processor) image is captured. The captured image are then processed by using image processing technique, the processed image are then converted into voltage levels through MAX 232 level converter and given it to the microcontroller unit serially and ultrasonic sensor to detect the obstacle in front of robot. In this robot we have mode selection switch Automatic and Manual control of robot, we use ultrasonic sensor in automatic mode to find obstacle, in Manual mode to use the keypad to operate wheel chair. In the microcontroller unit, c language coding is predefined, according to this coding the robot which connected to it was controlled. Robot which has several motors is activated by using the motor drivers. Motor drivers are nothing but a switch which ON/OFF the motor according to the control given by the microcontroller unit.

  11. The Relationship between Mastery and Depression among Japanese Family Caregivers

    ERIC Educational Resources Information Center

    Schreiner, Andrea S.; Morimoto, Tomoko

    2003-01-01

    The present study examined the relationship between caregiver mastery and depressive symptoms among family stroke caregivers in western Japan (N = 100). Family caregivers were identified from a sample of rehabilitation hospitals; participation rate was 100 percent for all eligible caregivers. Care-givers with high mastery were found to have…

  12. The burden of childhood tuberculosis: a public health perspective.

    PubMed

    Marais, B J; Obihara, C C; Warren, R M; Schaaf, H S; Gie, R P; Donald, P R

    2005-12-01

    The burden of childhood tuberculosis (TB) reflects recent transmission within a community and the level of TB control achieved within the adult (maintenance host) population. Children contribute little to the maintenance of the TB epidemic, but they may suffer severe TB-related morbidity and mortality. This review describes the main determinants of the burden of childhood TB within a particular community. Basic infectious disease principles identify the community, and not the individual, as the central entity that sustains an epidemic. The prevalence of TB is determined by the community's exposure to Mycobacterium tuberculosis, and their vulnerability to developing disease following exposure. The main variables that influence both exposure and vulnerability are discussed. Multiple variables are linked to poverty, and it is their cumulative effect, rather than the exact degree of poverty, that seems most important. Diligent contact tracing and the use of preventive chemotherapy will reduce the TB-related suffering of children. The burden of childhood TB, however, is a reflection of our ability to control the epidemic; this remains the ultimate challenge. Current efforts to control the TB epidemic aim to reduce transmission by treating sputum smear-positive adults, while very little emphasis is placed on reducing the vulnerability of high-burden communities. Successful control of the epidemic is the most effective way to reduce the burden of childhood TB, but this will require a holistic approach that acknowledges the importance of sustainable poverty alleviation. PMID:16466051

  13. Assessing the Experience of Medically Ill Youth Participating in Psychological Research: Benefit, Burden, or Both?

    PubMed Central

    Wiener, L; Battles, H; Zadeh, S; Pao, M

    2014-01-01

    Few data exist pertaining to the perceived burdens or benefits of medically ill children participating in psychological research studies, particularly in outpatient pediatric settings. As part of a larger study that involved completing self-report questionnaires, this study assessed whether participation was burdensome and/or beneficial to 271 children undergoing treatment for cancer, NF1, sickle cell, HIV, primary immune deficiencies, and Li Fraumeni and to their caregivers. The majority of patients (83%) and their caregivers (93%) did not find participating burdensome. Moreover, the majority of patients (85%) and caregivers (95%) found at least some benefit to participation, including finding it helpful to be asked about issues that affect their life and feeling good about helping others. The data suggest that resistance to psychological research based on the belief that such research is intrusive and potentially harmful overestimates the negative aspects and potentially impedes progress studying positive psychosocial outcomes in outpatient pediatric research. PMID:26783591

  14. Harnessing motivation to alleviate neglect.

    PubMed

    Russell, Charlotte; Li, Korina; Malhotra, Paresh A

    2013-01-01

    The syndrome of spatial neglect results from the combination of a number of deficits in attention, with patients demonstrating both spatially lateralized and non-lateralized impairments. Previous reports have hinted that there may be a motivational component to neglect and that modulating this might alleviate some of the debilitating symptoms. Additionally, recent work on the effects of reward on attention in healthy participants has revealed improvements across a number of paradigms. As the primary deficit in neglect has been associated with attention, this evidence for reward's effects is potentially important. However, until very recently there have been few empirical studies addressing this potential therapeutic avenue. Here we review the growing body of evidence that attentional impairments in neglect can be reduced by motivation, for example in the form of preferred music or anticipated monetary reward, and discuss the implications of this for treatments for these patients. Crucially these effects of positive motivation are not observed in all patients with neglect, suggesting that the consequences of motivation may relate to individual lesion anatomy. Given the key role of dopaminergic systems in motivational processes, we suggest that motivational stimulation might act as a surrogate for dopaminergic stimulation. In addition, we consider the relationship between clinical post stroke apathy and lack of response to motivation.

  15. Harnessing Motivation to Alleviate Neglect

    PubMed Central

    Russell, Charlotte; Li, Korina; Malhotra, Paresh A.

    2013-01-01

    The syndrome of spatial neglect results from the combination of a number of deficits in attention, with patients demonstrating both spatially lateralized and non-lateralized impairments. Previous reports have hinted that there may be a motivational component to neglect and that modulating this might alleviate some of the debilitating symptoms. Additionally, recent work on the effects of reward on attention in healthy participants has revealed improvements across a number of paradigms. As the primary deficit in neglect has been associated with attention, this evidence for reward’s effects is potentially important. However, until very recently there have been few empirical studies addressing this potential therapeutic avenue. Here we review the growing body of evidence that attentional impairments in neglect can be reduced by motivation, for example in the form of preferred music or anticipated monetary reward, and discuss the implications of this for treatments for these patients. Crucially these effects of positive motivation are not observed in all patients with neglect, suggesting that the consequences of motivation may relate to individual lesion anatomy. Given the key role of dopaminergic systems in motivational processes, we suggest that motivational stimulation might act as a surrogate for dopaminergic stimulation. In addition, we consider the relationship between clinical post stroke apathy and lack of response to motivation. PMID:23761744

  16. Registered Nurses’ Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study

    PubMed Central

    2016-01-01

    Introduction Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes. Aims The aims of this study are to explore registered nurses’ perceptions about the situation of family caregivers to patients with heart failure, and registered nurses’ interventions, in order to improve family caregivers’ situation. Methods The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis. Results Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area “Family caregivers' situation” includes two categories: “To be unburdened” and “To comprehend the heart failure condition and its consequences”. The content area “Interventions to improve family caregivers' situation” includes two categories: “Individualized support and information” and “Bridging contact”. Conclusions Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care

  17. Caring for Caregivers: Bridging the Care Gap.

    PubMed

    Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Morton-Chang, Frances

    2015-01-01

    While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question, "how should we refer to caregivers," pushes us to acknowledge the diversity of caregiver characteristics, contexts and roles. The second, "how should we understand the caregiver 'problem'," reminds us that although often thought of as an individual matter, caregiving is a public policy issue requiring broader systems thinking and approaches. The third, "what should we do about it," draws attention to the importance of building and strengthening social networks to support caregivers and bridge a "growing care gap." We offer the example of Japan which, as part of its national dementia care policy, is now encouraging the development of inter-generational dementia-friendly communities. PMID:26960243

  18. Occupational segregation, gender essentialism and male primacy as major barriers to equity in HIV/AIDS caregiving: Findings from Lesotho

    PubMed Central

    2011-01-01

    Background Gender segregation of occupations, which typically assigns caring/nurturing jobs to women and technical/managerial jobs to men, has been recognized as a major source of inequality worldwide with implications for the development of robust health workforces. In sub-Saharan Africa, gender inequalities are particularly acute in HIV/AIDS caregiving (90% of which is provided in the home), where women and girls make up the informal (and mostly unpaid) workforce. Men's and boy's entry into HIV/AIDS caregiving in greater numbers would both increase the equity and sustainability of national and community-level HIV/AIDS caregiving and mitigate health workforce shortages, but notions of gender essentialism and male primacy make this far from inevitable. In 2008 the Capacity Project partnered with the Lesotho Ministry of Health and Social Welfare in a study of the gender dynamics of HIV/AIDS caregiving in three districts of Lesotho to account for men's absence in HIV/AIDS caregiving and investigate ways in which they might be recruited into the community and home-based care (CHBC) workforce. Methods The study used qualitative methods, including 25 key informant interviews with village chiefs, nurse clinicians, and hospital administrators and 31 focus group discussions with community health workers, community members, ex-miners, and HIV-positive men and women. Results Study participants uniformly perceived a need to increase the number of CHBC providers to deal with the heavy workload from increasing numbers of patients and insufficient new entries. HIV/AIDS caregiving is a gender-segregated job, at the core of which lie stereotypes and beliefs about the appropriate work of men and women. This results in an inequitable, unsustainable burden on women and girls. Strategies are analyzed for their potential effectiveness in increasing equity in caregiving. Conclusions HIV/AIDS and human resources stakeholders must address occupational segregation and the underlying gender

  19. Can Earth Sciences Help Alleviate Global Poverty?

    NASA Astrophysics Data System (ADS)

    Mutter, J. C.

    2004-12-01

    essential and could hold the key to making gains toward alleviating the burden of global poverty.

  20. Rural and Urban Caregivers for Older Adults in Poland: Perceptions of Positive and Negative Impact of Caregiving

    ERIC Educational Resources Information Center

    Bien, Barbara; Wojszel, Beata; Sikorska-Simmons, Elzbieta

    2007-01-01

    This study examines rural-urban differences in informal caregivers' perceptions of caregiving. The study's theoretical framework is based on the two-factor model of caregiving, which views caregiving as having both positive and negative impact. Data were collected in personal interviews with 126 rural and 127 urban caregivers in the Bialystok…

  1. Modes of independence while informal caregiving.

    PubMed

    Tellioğlu, Hilda; Hensely-Schinkinger, Susanne; Pinatti De Carvalho, Aparecido Fabiano

    2015-01-01

    This paper is about understanding and conceptualizing the notion of independence in the context of caregiving. Based on the current studies and on our ethnographic and design research in an AAL project (TOPIC) we introduce a model of independence consisting of four dimensions: action, finance, decision, and emotion. These interrelated dimensions are described and discussed in the setting of informal caregiving. Some additional examples are shown to illustrate how to reduce the dependence of informal caregivers before concluding the paper. PMID:26294578

  2. Economic Burden of Schizophrenia in South Korea

    PubMed Central

    Chang, Sung Man; Cho, Seong-Jin; Jeon, Hong Jin; Hahm, Bong-Jin; Lee, Hyo Jung; Park, Jong-Ik

    2008-01-01

    This study estimates the treated prevalence of schizophrenia and the annual costs associated with the illness in Korea in 2005, from a societal perspective. Annual direct healthcare costs associated with schizophrenia were estimated from National Health Insurance and Medical Aid records. Annual direct non-healthcare costs were estimated for incarceration, transport, community mental health centers, and institutions related to schizophrenia. Annual indirect costs were estimated for the following components of productivity loss due to illness: unemployment, reduced productivity, premature mortality, and caregivers' productivity loss using a human capital approach based on market wages. All costs were adjusted to 2005 levels using the healthcare component of the Consumer Price Index. The treated prevalence of schizophrenia in 2005 was 0.4% of the Korean population. The overall cost of schizophrenia was estimated to be $ 3,174.8 million (3,251.0 billion Won), which included a direct healthcare cost of $ 418.7 million (428.6 billion Won). Total direct non-healthcare costs were estimated to be $ 121 million (123.9 billion Won), and total indirect costs were estimated at $ 2,635.1 million (2,698.3 billion Won). Unemployment was identified as the largest component of overall cost. These findings demonstrate that schizophrenia is not rare, and that represents a substantial economic burden. PMID:18436996

  3. Neuroticism and Longitudinal Change in Caregiver Depression: Impact of a Spouse-Caregiver Intervention Program

    ERIC Educational Resources Information Center

    Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.

    2004-01-01

    Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced…

  4. Cortisol Levels of Caregivers in Child Care Centers as Related to the Quality of their Caregiving

    ERIC Educational Resources Information Center

    de Schipper, Elles J.; Riksen-Walraven, J. Marianne; Geurts, Sabine A. E.; de Weerth, Carolina

    2009-01-01

    The present study examined whether stress in professional caregivers--as reflected in salivary cortisol levels--is related to the quality of their caregiving behavior. The 221 professional female caregivers in 64 child care centers were observed in three different situations and saliva samples were taken three times during the morning. Results…

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

    ERIC Educational Resources Information Center

    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. Understanding…

  6. End-of-Life Caregiver's Perspectives on Their Role: Generative Caregiving

    ERIC Educational Resources Information Center

    Phillips, Linda R.; Reed, Pamela G.

    2010-01-01

    Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

  7. Parent-Caregiver Relationships among Beginning Caregivers in Canada: A Quantitative Study

    ERIC Educational Resources Information Center

    Cantin, Gilles; Plante, Isabelle; Coutu, Sylvain; Brunson, Liesette

    2012-01-01

    Despite the importance of establishing meaningful parent-caregiver relationships, little is known about these dyadic relationships among beginning caregivers, who often feel insufficiently prepared to build successful alliances with parents. The present study examined the congruence between parents' and beginning caregivers' perceptions of their…

  8. Mental Trauma Experienced by Caregivers of patients with Diffuse Axonal Injury or Severe Traumatic Brain Injury

    PubMed Central

    Syed Hassan, Syed Tajuddin; Jamaludin, Husna; Abd Raman, Rosna; Mohd Riji, Haliza; Wan Fei, Khaw

    2013-01-01

    Context As with care giving and rehabilitation in chronic illnesses, the concern with traumatic brain injury (TBI), particularly with diffuse axonal injury (DAI), is that the caregivers are so overwhelmingly involved in caring and rehabilitation of the victim that in the process they become traumatized themselves. This review intends to shed light on the hidden and silent trauma sustained by the caregivers of severe brain injury survivors. Motor vehicle accident (MVA) is the highest contributor of TBI or DAI. The essence of trauma is the infliction of pain and suffering and having to bear the pain (i.e. by the TBI survivor) and the burden of having to take care and manage and rehabilitate the TBI survivor (i.e. by the TBI caregiver). Moreover many caregivers are not trained for their care giving task, thus compounding the stress of care giving and rehabilitating patients. Most research on TBI including DAI, focus on the survivors and not on the caregivers. TBI injury and its effects and impacts remain the core question of most studies, which are largely based on the quantitative approach. Evidence Acquisition Qualitative research can better assess human sufferings such as in the case of DAI trauma. While quantitative research can measure many psychometric parameters to assess some aspects of trauma conditions, qualitative research is able to fully reveal the meaning, ramification and experience of TBI trauma. Both care giving and rehabilitation are overwhelmingly demanding; hence , they may complicate the caregivers’ stress. However, some positive outcomes also exist. Results Caregivers involved in caring and rehabilitation of TBI victims may become mentally traumatized. Posttraumatic recovery of the TBI survivor can enhance the entire family’s closeness and bonding as well as improve the mental status of the caregiver. Conclusions A long-term longitudinal study encompassing integrated research is needed to fully understand the traumatic experiences of

  9. Coping with stigma by association and family burden among family members of people with mental illness.

    PubMed

    van der Sanden, Remko L M; Stutterheim, Sarah E; Pryor, John B; Kok, Gerjo; Bos, Arjan E R

    2014-10-01

    In this study, we explored stigma by association, family burden, and their impact on the family members of people with mental illness. We also studied the ways in which family members coped with these phenomena. We conducted semistructured interviews with 23 immediate family members of people with mental illness. Participants reported various experiences of stigma by association and family burden. Social exclusion, being blamed, not being taken seriously, time-consuming caregiving activities, and exhaustion appeared to be the predominant forms of stigma by association and family burden experienced by the participants. The participants used problem-focused and emotion-focused coping strategies, separately or simultaneously, to cope with the negative impact of stigma by association and family burden. The results suggest that family members should have access to services to address these problems. Social, instrumental, and emotional support should be given to family members by community members and mental health professionals.

  10. Family Caregivers in Cancer (PDQ®)—Patient Version

    Cancer.gov

    Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.

  11. Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries

    PubMed Central

    2010-01-01

    with years of formal education. Conclusions The caregiver-child relationship is central to a child's development. OAC already face stigma as a result of their orphaned or abandoned status; the addition of HIV-related stigma represents a double burden for these children. Further research on the prevalence of HIV-related acceptance and stigma among caregivers and implications of such stigma for child development will be critical as the policy community responds to the global HIV/AIDS orphan crisis. PMID:20723246

  12. From burden to spritual growth: Korean students' experience in a spiritual care practicum.

    PubMed

    So, Woi Sook; Shin, Hye Sook

    2011-01-01

    Little is known about how students learn spiritual caregiving. A phenomenological study was conducted to examine the experience of Korean nursing students in a spiritual care practicum. Interviews with 12 students were analyzed and organized into 40 themes, 17 theme clusters, and five categories describing their experience in the practicum. Students initially experienced burdens and helplessness,followed by improvement of coping skills, self-reflection, and spiritual growth.

  13. Living longer with adult high-grade glioma: setting a research agenda for patients and their caregivers.

    PubMed

    Russell, Bethany; Collins, Anna; Dally, Michael; Dowling, Anthony; Gold, Michelle; Murphy, Michael; Philip, Jennifer

    2014-10-01

    The long-term survival of patients with adult high-grade glioma (HGG) remains poor, but for those who do live longer functional status and neurocognitive ability may be influenced by residual or recurrent tumour, or treatment-related complications. The aim of this review was to examine the current literature regarding the quality of life and experience of patients living longer with adult HGG and their caregivers, with a view to understanding the burden of treatment on patient abilities and deficits over time. Medline, PsychINFO and CINAHL databases were searched for the core concept of HGG in combination with an aspect of quality of long-term survival. Key findings of the 12 included studies were identified and synthesised thematically. There is a paucity of dedicated studies which have investigated the experiences of this cohort. The strength of existing literature is limited by the systematic exclusion of the poorest functioning patients and the under-representation of caregiver perspectives. Discrepancies in how patients view their quality of life were highlighted, despite consistent findings of significant physical and functional impairment. This review confirmed the presence of important differences between patient and caregiver views regarding patient abilities following treatment. Caregiver burden was found to be high, due to multiple dynamic and relentless stressors. The true experience of patients living longer with adult HGG and their caregivers remains unclear, particularly for patients with poorer neurocognitive and functional outcomes. Further research is required to clarify and replicate findings, explore discrepancies between patient and caregiver views, and to specifically investigate how caregiver needs and experiences may evolve over time. PMID:24980038

  14. Sharing the Preservation Burden

    SciTech Connect

    Giaretta, D.

    2008-07-01

    Preserving digitally encoded information which is not just to be rendered, as a document, but which must processed, like data, is even harder than one might think, because understandability of the information which is encoded in the digital object(s) is what is required. Information about Nuclear Waste will include both documents as well as data. Moreover one must be able to understand the relationship between the many individual pieces of information. Furthermore the volume of information involved will require us to allow automated processing of such information. Preserving the ability to understand and process digitally encoded information over long periods of time is especially hard when so many things will change, including hardware, software, environment and the tacit and implicit knowledge that people have. Since we cannot predict these changes this cannot be just a one-off action; continued effort is required. However it seems reasonable to say that no organization, project or person can ever say for certain that their ability to provide this effort is going to last forever. What can be done? Can anything be guaranteed? Probably not guaranteed - but at least one can try to reduce the risk of losing the information. We argue that if no single organization, project or person can guarantee funding or effort (or even interest), then somehow we must share the 'preservation load', and this is more than a simple chain of preservation consisting of handing on the collection of bits from one holder to the next. Clearly the bits must be passed on (but may be transformed along the way), however something more is required - because of the need to maintain understandability, not just access. This paper describes the tools, techniques and infrastructure components which the CASPAR project is producing to help in sharing the preservation burden. In summary: CASPAR is attempting to use OAIS concepts rigorously and to the fullest extent possible, supplementing these where

  15. Burden sharing or burden shifting Armaments cooperation within NATO

    SciTech Connect

    Smith, R.W.

    1993-01-01

    This study has explored the nature of decision-making under conditions of conflicting political and economic imperatives. The participants want the cooperative program to succeed. They also want to bear the least burden necessary for success by shifting it to others. The concepts of burden sharing and burden shifting have been explored in the context of armaments cooperation through analysis of six armaments cooperation cases. The cases ranged from the NATO Sea Sparrow Missile System to the 155MM Autonomous Precision Guided Missile. Ideal models of burden sharing and burden shifting were developed to aid the analysis. The resultant theoretical framework of armaments cooperation within the NATO alliance has been used to explain success or lack of success in cooperative programs. Each case study addressed the categories of: Political Environment, Program Inception, Management Structure, and Results. Comparative analysis between programs was facilitated by using similar criteria for success or failure throughout. Each of the hypotheses making up the ideal models for burden sharing and burden shifting were examined considering the individual cases. An assessment of validity was made. Comparative analysis of selected case pairs facilitated isolation of factors that may have contributed to different results. These assessments were combined and formed the basis for the final conclusions on each hypothesis and their respective importance. This study adds to the theoretical understanding of alliance politics by examining in depth these concepts. It also supports future efforts to understand alliance politics by providing a framework for examining and testing deductively derived propositions against experience.

  16. Quality of life of caregivers and patients on peritoneal dialysis.

    PubMed

    Fan, Stanley Lin-Sun; Sathick, Insara; McKitty, Khadija; Punzalan, Sally

    2008-05-01

    Peritoneal dialysis is the archetypal home-based therapy and is often favoured by patients. However, as patients with end-stage renal failure become more elderly, with more co-morbidity, their dependence on carers to provide physical, emotional and logistical support increases. The effect of this chronic burden has not been systematically studied. We have prospectively studied patients with end-stage renal failure starting peritoneal dialysis and their carers over a 1-year period. We selected a cohort of caregivers that are actively involved with the care of their partners' dialysis. Quality of Life (QoL) assessed by SF-36 questionnaires showed the patients and carers had impairment of QoL at the start of dialysis. As expected, the baseline QoL Physical Component Scores highly correlated with co-morbidity and assessment of functional capacity. Scores of all QoL domains improved after 1 year and this reached statistical significance for social functioning for both patients and carers. When we compared carers of highly dependent patients (required to perform daily dialysis) with carers of less dependent patients, we noted that the former had a statistically significant worsening of their mental health but other parameters were not different. We have shown that despite increasing the burden for caregivers, with careful selection, education and support, we did not adversely impact on the QoL of carers whilst there was some evidence of improvement, especially in social functioning. This gives reassurance that establishing dependent patients on PD is compatible with a holistic approach to the patients and their families. PMID:18182410

  17. Young Children's Knowledge of Parental Caregiving Behaviors.

    ERIC Educational Resources Information Center

    Eder, Rebecca A.

    Preschool children's knowledge of adult caregiving behaviors was examined with a sample of 14 middle-class, Caucasian boys and girls between the ages of 24 and 27 months. Each child's caregiving behavior in a laboratory environment containing dolls, toy animals, and toy objects, while accompanied by his or her mother, was recorded independently by…

  18. Routines. Infant/Toddler Caregiving: A Guide.

    ERIC Educational Resources Information Center

    Gonzalez-Mena, Janet

    Intended for use in conjunction with videos illustrating key concepts and caregiving techniques, this guide focuses on how the daily routines of caring for infants and toddlers can become opportunities for promoting the child's learning and development and for deepening the relationship between child and caregiver. Special attention is given to…

  19. Cognitive and Socioemotional Caregiving in Developing Countries

    ERIC Educational Resources Information Center

    Bornstein, Marc H.; Putnick, Diane L.

    2012-01-01

    Enriching caregiving practices foster the course and outcome of child development. This study examined 2 developmentally significant domains of positive caregiving--cognitive and socioemotional--in more than 127,000 families with under-5 year children from 28 developing countries. Mothers varied widely in cognitive and socioemotional caregiving…

  20. Caregiving as a Family Network Event.

    ERIC Educational Resources Information Center

    Mellins, Claude A.; And Others

    Caregiving studies often focus on the impaired elder who is the care receiver and the one family member who is perceived as the primary caregiver. Such studies fail to consider all members of the family, whether or not they are involved in providing care. This study was conducted to explore the effects of an elder's health-related dependency on…

  1. Adopting the Caregiver Role: A Family Legacy.

    ERIC Educational Resources Information Center

    Piercy, Kathleen W.; Chapman, Jeffery G.

    2001-01-01

    A qualitative study was done to investigate how adult children become caregivers to older parents with functional impairments and what roles their own children adopt in their family's care arrangement. Interviews revealed five influences on children and grandchildren's adoption of caregiver roles: expectations; family rules; religious training;…

  2. Caregivers with Visual Impairments: A Preliminary Study

    ERIC Educational Resources Information Center

    Fuhr, Patti; Martinez, Bethany; Williams, Michael

    2008-01-01

    Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, "informal caregivers" are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the…

  3. Behavioral and Psychosocial Interventions for Family Caregivers

    ERIC Educational Resources Information Center

    Zarit, Steven; Femia, Elia

    2008-01-01

    Gerontologic research in the past 40 years has shown that caring for an older, disabled person affects the health and well-being of the caregiver. This important contribution led to a wide range of programs and services designed to buffer caregivers from the effects of stressors. Many of these programs have been quite innovative. Although…

  4. Predictors of Depressive Symptoms among Foster Caregivers

    ERIC Educational Resources Information Center

    Cole, Susan A.; Eamon, Mary Keegan

    2007-01-01

    Objectives: The main purposes of this study were to determine (1) the prevalence of depressive symptoms among foster caregivers, (2) the social-demographics, risk factors, and social support predicting depressive symptoms, and (3) whether social support buffered the effects of the risk factors in the Illinois Foster Caregivers Study. Method:…

  5. Concept Analysis: Alzheimer’s Caregiver Stress

    PubMed Central

    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

  6. Early Interventionists' Perspectives on Teaching Caregivers

    ERIC Educational Resources Information Center

    Sawyer, Brook E.; Campbell, Philippa H.

    2012-01-01

    Relatively little is known about the role of early interventionists as teachers of caregivers. The current study was conducted to better understand interventionists' perspectives about teaching caregivers. A national sample of 1,525 multidisciplinary interventionists completed an online questionnaire, which elicited information about…

  7. Vivekananda Yoga Program for Patients with Advanced Lung Cancer and their Family Caregivers

    PubMed Central

    Milbury, Kathrin; Mallaiah, Smitha; Lopez, Gabriel; Liao, Zhongxing; Yang, Chunyi; Carmack, Cindy; Chaoul, Alejandro; Spelman, Amy; Cohen, Lorenzo

    2015-01-01

    BACKGROUND Although yoga practice may improve quality of life (QOL) in cancer patients, feasibility in patients with lung cancer is largely unknown. Moreover, previous research has excluded patients’ family caregivers. Because caregivers are vulnerable to caregiver burden, a dyadic approach targeting QOL in both patient and caregiver may be particularly beneficial. Thus, the purpose of this study was to establish the feasibility of a couple-based Vivekananda Yoga (VKC) intervention in lung cancer patients and caregivers. Vivekananda Yoga may be suitable for a dyadic approach and address the multifaceted needs (e.g., emotional, physical, spiritual, and social) common among families coping with lung cancer. METHOD In this single-arm feasibility trial, patients with lung cancer undergoing radiotherapy and their caregivers participated in a 15-session VKC program focused on the interconnectedness of the dyad. The program consisted of four main components: 1) joint loosening with breath synchronization; 2) postures (asanas) and a deep relaxation technique; 3) breath energization (pranayama) with sound resonance; and 4) meditation. We assessed pre/post-intervention levels of fatigue (BFI), sleep disturbances (PSQI), psychological distress (BSI), overall mental and physical QOL (SF-36), spirituality (FACT-Sp) and relational closeness. We also tracked feasibility data, and participants completed program evaluations. RESULTS We approached 28 eligible dyads of which 15 (53%) consented and 9 (60%) completed the intervention. No adverse events were reported. Patients (mean age: 73 years, 63% female, all stage III) and caregivers (mean age: 62 years, 38% female, 63% spouses) completed a mean of 10 sessions (range: 4–14) and 95.5% of them rated the program as very useful. Paired t-tests revealed a significant increase in patients’ mental health (d=.84, P=.04) and a significant decrease in caregivers’ sleep disturbances (d=1.44, P=.02). Although not statistically

  8. Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

    PubMed

    Miyawaki, Christina E

    2016-03-01

    This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

  9. Hypertension burden in Luxembourg

    PubMed Central

    Ruiz-Castell, Maria; Kandala, Ngianga-Bakwin; Kuemmerle, Andrea; Schritz, Anna; Barré, Jessica; Delagardelle, Charles; Krippler, Serge; Schmit, Jean-Claude; Stranges, Saverio

    2016-01-01

    Abstract Hypertension is a modifiable risk factor for cardiovascular disease, but it remains the main cause of death in Luxembourg. We aimed to estimate the current prevalence of hypertension, associated risk factors, and its geographic variation in Luxembourg. Cross-sectional, population-based data on 1497 randomly selected Luxembourg residents aged 25 to 64 years were collected as part of the European Health Examination Survey from 2013 to 2015. Hypertension was defined as systolic/diastolic blood pressure ≥140/90 mm Hg, self-report of a physician diagnosis or on antihypertensive medication. Standard and Bayesian regressions were used to examine associations between hypertension and covariates, and also geographic distribution of hypertension across the country. Nearly 31% of Luxembourg residents were hypertensive, and over 70% of those were either unaware of their condition or not adequately controlled. The likelihood of hypertension was lower in men more physically active (odds ratio [95% credible region] 0.6 [0.4, 0.9]) and consuming alcohol daily (0.3 [0.1, 0.8]), and higher in men with a poor health perception (1.6 [1.0, 2.7]) and in women experiencing depressive symptoms (1.8 [1.3, 2.7]). There were geographic variations in hypertension prevalence across cantons and municipalities. The highest odds ratio was observed in the most industrialized region (South-West) (1.2 [0.9, 1.6]) with a positive effect at 90% credible region. In Luxembourg, the vast majority of people with hypertension are either unaware of their condition or not adequately controlled, which constitutes a major, neglected public health challenge. There are geographic variations in hypertension prevalence in Luxembourg, hence the role of individual and regional risk factors along with public health initiatives to reduce disease burden should be considered. PMID:27603374

  10. Family caregivers and limitations in social activities.

    PubMed

    Miller, B; Montgomery, A

    1990-03-01

    Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers. PMID:2180010

  11. Family caregivers and limitations in social activities.

    PubMed

    Miller, B; Montgomery, A

    1990-03-01

    Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers.

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

    PubMed

    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.

  13. Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia

    PubMed Central

    Tsai, Chia-Fen; Lee, Yao-Tung; Lee, Wei-Ju; Hwang, Jen-Ping; Wang, Shuu-Jiun; Fuh, Jong-Ling

    2015-01-01

    Background Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors. Methods A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies–Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia. Results The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4–31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2–87.2, P = 0.005) preferences. Conclusion The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy. PMID:26230958

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

    PubMed Central

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

    2015-01-01

    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 HF dyads manage the patient’s care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (i.e., daily adherence and symptom monitoring) and management (i.e., appropriate recognition & response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients were 76.2 (SD=10.7) years, a slight majority (56.9%) was male, while caregivers were 57.4 (SD=14.6) years, and fewer than 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. Several significant individual and dyadic determinants of self-care maintenance and self-care management were identified, including 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 maximize outcomes. PMID:26355702

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

    PubMed

    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. PMID:26355702

  16. Caregiving

    MedlinePlus

    ... can help make life better for people with Parkinson's General Gift Tribute Gift Moving Day ® Team Hope ... can help make life better for people with Parkinson's General Gift Tribute Gift Moving Day ® Team Hope ...

  17. Caregiving

    MedlinePlus

    ... Medicare card Report fraud & abuse File a complaint Identity theft: protect yourself Phone numbers & websites Privacy practices ... items? Get Medicare forms Publications Information in other languages Phone numbers & websites Helpful Links Site Map Site ...

  18. Caregivers

    MedlinePlus

    ... day, 7 days a week. If you're caring for someone with mental problems like Alzheimer's disease it can be especially difficult. Support groups can help. Dept. of Health and Human Services Office on Women's Health

  19. “I wouldn’t look at it as stress”: Conceptualizations of Caregiver Stress among Low-Income Families of Children with Asthma

    PubMed Central

    Sampson, Natalie R.; Parker, Edith A.; Cheezum, Rebecca R.; Lewis, Toby C.; O’Toole, Ashley; Zuniga, Adriana; Patton, Jean; Robbins, Thomas G.; Keirns, Carla C.

    2014-01-01

    Low-income caregivers of children with asthma experience multiple stressors, likely worsening family health. As part of Community Action Against Asthma’s community-based participatory research partnership, researchers conducted 40 qualitative semi-structured interviews and quantitative surveys with low-income caregivers of children with asthma in Detroit, Michigan. Participants described daily childhood asthma experiences and completed scales including the Peds Quality of Life Family Impact Module and Zarit Burden Caregiver Scale. Quantitative scale findings suggested participants are moderately stressed or affected by their child’s illness. While there was some accordance between qualitative and quantitative findings, qualitative findings additionally captured many relevant life stressors, seemingly overlooked or conflated in scale responses. Many participants described asthma as part of childrearing, rather than as a stressor or burden. Findings encourage improvement of clinical, psychometric assessments used to measure and address stressors that shape health for many families with children with asthma. PMID:23377734

  20. "I wouldn't look at it as stress": conceptualizations of caregiver stress among low-income families of children with asthma.

    PubMed

    Sampson, Natalie R; Parker, Edith A; Cheezum, Rebecca R; Lewis, Toby C; O'Toole, Ashley; Zuniga, Adriana; Patton, Jean; Robbins, Thomas G; Keirns, Carla C

    2013-02-01

    Low-income caregivers of children with asthma experience multiple stressors, likely worsening family health. As part of Community Action Against Asthma's community-based participatory research partnership, researchers conducted 40 qualitative semi-structured interviews and quantitative surveys with low-income caregivers of children with asthma in Detroit, Michigan. Participants described daily childhood asthma experiences and completed scales including the Peds Quality of Life Family Impact Module and Zarit Burden Caregiver Scale. Quantitative scale findings suggested participants are moderately stressed or affected by their child's illness. While there was some accordance between qualitative and quantitative findings, qualitative findings additionally captured many relevant life stressors, seemingly overlooked or conflated in scale responses. Many participants described asthma as part of childrearing, rather than as a stressor or burden. Findings encourage improvement of clinical, psychometric assessments used to measure and address stressors that shape health for many families with children with asthma. PMID:23377734

  1. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal

    PubMed Central

    Marinova-Schmidt, Velislava; Setzer, Manuela; Kondylakis, Haridimos; Griebel, Lena; Sedlmayr, Martin; Graessel, Elmar; Maler, Juan Manuel; Kirn, Stefan; Kolominsky-Rabas, Peter L

    2016-01-01

    Background The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. Objective The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. Methods The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. Results A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. Conclusions Our study provides insight into the different user perspectives

  2. Cost and Predictors of Care-Seeking Behaviors Among Caregivers of Febrile Children-Uganda, 2009.

    PubMed

    Menon, Manoj P; Njau, Joseph D; McFarland, Deborah A

    2016-04-01

    Fever is a major cause of morbidity and mortality among children under 5 years of age in resource-limited countries. Although prevention and treatment of febrile illnesses have improved, the costs--both financial and nonfinancial--remain barriers to care. Using data from the 2009 Uganda Malaria Indicator Survey, we describe the costs associated with the care of a febrile child and assess predictors of care-seeking behavior. Over 80% of caregivers sought care for their febrile child, however less than half did so on either the day of or the day after the development of fever. The odds of seeking care decreased with each additional month of the child's age. Caregivers living in rural areas were more likely to seek care, however were less likely to seek care promptly. Caregivers with at least a primary school education and those familiar with the protective effect of bed nets and the need to seek care promptly were more likely to seek care. Despite government assistance, the majority of caregivers did incur costs (mean 13,173 Ugandan shilling; $6.84 U.S. dollars) associated with medical care. Continued efforts targeting barriers to seeking care, including the economic burden, are necessary. PMID:26880780

  3. Older patients’ perceived burdens of their health problems: a cross-sectional analysis in 74 German general practices

    PubMed Central

    Junius-Walker, Ulrike; Wiese, Birgitt; Klaaßen-Mielke, Renate; Theile, Gudrun; Müller, Christiane Annette; Hummers-Pradier, Eva

    2015-01-01

    Background Older patients often experience the burden of multiple health problems. Physicians need to consider them to arrive at a holistic treatment plan. Yet, it has not been systematically investigated as to which personal burdens ensue from certain health conditions. Objective The objective of this study is to examine older patients’ perceived burden of their health problems. Patients and methods The study presents a cross-sectional analysis in 74 German general practices; 836 patients, 72 years and older (mean 79±4.4), rated the burden of each health problem disclosed by a comprehensive geriatric assessment. Patients rated each burden using three components: importance, emotional impact, and impact on daily activities. Cluster analyses were performed to define patterns in the rating of these components of burden. In a multilevel logistic regression analysis, independent factors that predict high and low burden were explored. Results Patients had a median of eleven health problems and rated the burden of altogether 8,900 health problems. Four clusters provided a good clustering structure. Two clusters describe a high burden, and a further two, a low burden. Patients attributed a high burden to social and psychological health problems (especially being a caregiver: odds ratio [OR] 10.4, 95% confidence interval [CI] 4.4–24.4), to specific symptoms (eg, claudication: OR 2.3, 95% CI 1.3–4.0; pain: OR 2.3, 95% CI 1.6–3.1), and physical disabilities. Patients rated a comparatively low burden for most of their medical findings, for cognitive impairment, and lifestyle issues (eg, hypertension: OR 0.2, 95% CI 0.2–0.3). Conclusion The patients experienced a relatively greater burden for physical disabilities, mood, or social issues than for diseases themselves. Physicians should interpret these burdens in the individual context and consider them in their treatment planning. PMID:26124648

  4. The information transfer and knowledge acquisition geographies of family caregivers: an analysis of Canada's Compassionate Care Benefit.

    PubMed

    Crooks, Valorie A; Williams, Allison; Stajduhar, Kelli I; Allan, Diane E; Cohen, S Robin

    2007-09-01

    The authors explore an underdeveloped area of health geography by examining information transfer and knowledge acquisition for a health-related social program. Specifically, they discuss the findings of a small-scale utilization-focused evaluation of Canada's Compassionate Care Benefit (CCB). The CCB allows workers who are eligible for employment insurance to leave work to care for family members at end-of-life. Using the findings of 25 interviews with family caregivers, the authors explore their geographies of information transfer and knowledge acquisition. First, however, they introduce their respondent group and provide an overview of their socio-spatial lives as family caregivers. They then examine 3 specific thematic findings: awareness of the CCB, access to information related to the CCB, and the application process. The authors discuss the implications of the findings for the information needs and burdens of family caregivers and for Canadian nursing practice. They also consider directions for future CCB research. PMID:17970459

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

    PubMed Central

    Pinquart, Martin; Sörensen, Silvia

    2015-01-01

    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 psychological distress among spouses are explained mostly—but not completely—by higher levels of care provision. Few differences emerge between children and children-in-law, but children-in-law perceive the relationship with the care recipient as less positive and they report fewer uplifts of caregiving. PMID:21417538

  6. Male caregivers' use of formal support.

    PubMed

    Coe, M; Neufeld, A

    1999-08-01

    The purpose of this study was to explore male caregivers' perceptions of formal support. The men were caregivers of adults with cognitive impairment. The study involved secondary analysis of interview data on perceptions of support that had not been previously analyzed from the perspective of formal support. Techniques of data analysis used in grounded theory were applied to 62 guided interactive interviews conducted with 24 male caregivers during a period of 18 months. The men experienced a process of making concessions for care in the following four sequential stages: resisting, giving in, opening the door, and making the match. Personal barriers deterred the caregivers from seeking help, and once the caregivers engaged formal help the influence of characteristics of the health care system and individual staff members had both enabling and disabling effects. For caregivers whose use of formal support involved admitting their relative to a long-term care facility, the phase of making the match was followed by redesigning their caregiver role. PMID:11512171

  7. Improving policies for caregiver respite services.

    PubMed

    Rose, Miriam S; Noelker, Linda S; Kagan, Jill

    2015-04-01

    This paper provides a template for the decade ahead regarding the delivery, supply, and funding of caregiver respite services. Policy changes are needed to address these issues as concerns about our country's ability to meet future caregiving needs are growing along with our aging population. Federal initiatives and state-level policies and programs affecting respite are reviewed and directions for policy advancement are highlighted. Much more work is needed to educate caregivers and the general public about the necessity for respite beginning early in the caregiving career to prevent burnout and other adverse effects. Because it is unlikely that there will be a sufficient number of direct-care workers to replace unpaid caregivers, improved policies are needed to ensure that their situation is sustainable through increased availability of high-quality respite and other services vital to caregiver health and well-being. Among the 2015 White House Conference on Aging's priorities in the next decade, policies on long-term services and supports will require focused attention on family caregivers and the direct-care workforce to strengthen their ability to give care now and support their own physical, emotional, and financial needs in the future. PMID:26035607

  8. HIV / AIDS: An Unequal Burden

    MedlinePlus

    ... Navigation Bar Home Current Issue Past Issues HIV / AIDS HIV / AIDS: An Unequal Burden Past Issues / Summer 2009 Table ... Victoria Cargill talks to students about HIV and AIDS at the opening of a National Library of ...

  9. Caregiving, Marriage and Work Related Issues as Differentiated by Gender.

    ERIC Educational Resources Information Center

    Pastorello, Thomas; And Others

    A recently published national profile of caregivers of the frail elderly suggests potentially negative consequences of caregiving for work and employment for as many as one-third of the employed caregivers in a large 1983 sample. The study was undertaken to explore a comprehensive set of issues on informal caregiving and to determine the extent to…

  10. Combining Employment and Caregiving: An Intricate Juggling Act.

    ERIC Educational Resources Information Center

    Guberman, Nancy; Maheu, Pierre

    1999-01-01

    The process that allows family caregivers to combine employment and elder care was examined in interviews with 25 caregivers. The effects of elder care on employment are the result of the degree to which caregivers manage to maintain balance between different life spheres: personal and social life, family life, caregiving, and employment. (53…

  11. Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

    ERIC Educational Resources Information Center

    Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

  12. The FDP Faculty Burden Survey

    PubMed Central

    Rockwell, Sara

    2010-01-01

    To better understand the administrative burdens placed on faculty who perform research, the Faculty Standing Committee of the Federal Demonstration Partnership (FDP) invited 23,325 full-time faculty members who were Principal Investigators (PI) or Co-Principal Investigators (Co-PI) on active federally funded research grants to participate in a web-based survey that contained questions on the nature, size, and impact of the administrative tasks associated with their research projects. The responses of the 6,081 faculty respondents show that the administrative burden on faculty is very significant: 42% of the time spent by an average PI on a federally funded research project was reported to be expended on administrative tasks related to that project rather than on research. This administrative burden does not stem from one or a few exceptionally onerous tasks, but instead reflects the cumulative effect of the many administrative burdens imposed by different funding agencies, different offices within agencies, auditing and accrediting agencies, and academic institutions. The lack of institutional assistance contributes to the administrative workload of the faculty. Many burdens are remarkably constant across funding agencies, universities, disciplines, and faculty subgroups. The report documents the negative effect reported for these administrative burdens on the productivity of researchers, the careers of young faculty members, and the training of students. PMID:20563268

  13. Improving outcomes for caregivers through treatment of young people affected by war: a randomized controlled trial in Sierra Leone

    PubMed Central

    Salhi, Carmel; Hann, Katrina; Kellie, Jim; Kamara, Alimamy; Salomon, Joshua A; Kim, Jane J; Betancourt, Theresa S

    2015-01-01

    Abstract Objective To measure the benefits to household caregivers of a psychotherapeutic intervention for adolescents and young adults living in a war-affected area. Methods Between July 2012 and July 2013, we carried out a randomized controlled trial of the Youth Readiness Intervention – a cognitive–behavioural intervention for war-affected young people who exhibit depressive and anxiety symptoms and conduct problems – in Freetown, Sierra Leone. Overall, 436 participants aged 15–24 years were randomized to receive the intervention (n = 222) or care as usual (n = 214). Household caregivers for the participants in the intervention arm (n = 101) or control arm (n = 103) were interviewed during a baseline survey and again, if available (n = 155), 12 weeks later in a follow-up survey. We used a burden assessment scale to evaluate the burden of care placed on caregivers in terms of emotional distress and functional impairment. The caregivers’ mental health – i.e. internalizing, externalizing and prosocial behaviour – was evaluated using the Oxford Measure of Psychosocial Adjustment. Difference-in-differences multiple regression analyses were used, within an intention-to-treat framework, to estimate the treatment effects. Findings Compared with the caregivers of participants of the control group, the caregivers of participants of the intervention group reported greater reductions in emotional distress (scale difference: 0.252; 95% confidence interval, CI: 0.026–0.4782) and greater improvements in prosocial behaviour (scale difference: 0.249; 95% CI: 0.012–0.486) between the two surveys. Conclusion A psychotherapeutic intervention for war-affected young people can improve the mental health of their caregivers. PMID:26668435

  14. Caregiver-fabricated illness in a child.

    PubMed

    Koetting, Cathy

    2015-01-01

    In October 2004, a case of caregiver-fabricated illness in a child was identified in a children's hospital in the Midwest. This case report begins with a discussion and explanation of the various nomenclatures that have been used by the healthcare community such as Munchausen syndrome by proxy, factitious disorder by proxy, medical child abuse, and caregiver-fabricated illness in a child. A discussion of case facts is then presented, which includes key concepts that nurses should know regarding a diagnosis of caregiver-fabricated illness in a child and the interventions that should be taken. PMID:25900681

  15. Confidentiality and the family as caregiver.

    PubMed

    Petrila, J P; Sadoff, R L

    1992-02-01

    Many families provide mentally ill relatives with a residence and other support. Although professionals increasingly acknowledge the importance of the supportive role families play, families continue to report that they receive too little information from professionals about the patient, particularly when the family acts as caregiver. The authors suggest that mental health professionals' views about confidentiality may prevent them from providing information to families and urge professionals to rethink the issue of confidentiality and its application to families acting as caregivers. The authors conclude that certain information about a patient can--and should--be shared with families who are in a caregiver role without violating clinical, legal, or ethical principles.

  16. Perceptions of familial caregivers of elder adults.

    PubMed

    Sayles-Cross, S

    1993-01-01

    This study investigated perceptions of 139 familial caregivers of elder adults to answer the question "Is there a significant relationship between appraisal, social distance and the cost of caring for an elder family member?" The cost of caring was analyzed in five dimensions (personal-social restrictions, physical-emotional health, value, care recipient as provocateur and economic cost). Caregivers reported concern for their well-being, feelings of disgust/anger, high social distance and coping by accepting and holding back. Not only were significant relationships found, but caregivers emerged as an at-risk population.

  17. Caregiving in Dementia and its Impact on Psychological Functioning and Health-Related Quality of Life: Findings from a Colombian Sample.

    PubMed

    Moreno, Jhon Alexander; Nicholls, Elizabeth; Ojeda, Natalia; De los Reyes-Aragón, Carlos José; Rivera, Diego; Arango-Lasprilla, Juan Carlos

    2015-12-01

    Existing published studies about health-related quality of life (HRQOL) in caregivers of dementia patients living in Latin American countries are very limited. However, cultural aspects, personal values, and social structure may affect the way caregivers experience their role in different societies. The current study investigated the relationship between HRQOL and psychological factors using a cross-sectional design. The sample consisted of 102 informal caregivers of patients with dementia from Bogotá, Colombia, South America. Measures included the Patient Health Questionnaire (PHQ-9) for depression, the Satisfaction with Life Scale (SWLS), the Zarit Burden Interview, and the Short Health Questionnaire (SF36) for HRQOL. Canonical correlations revealed that there was a significant relationship between caregivers' mental health and HRQOL, such that caregivers with better satisfaction with life and less symptoms of depression had more vitality and better general health. There is a strong relationship between mental health and health-related quality of life in Colombian caregivers of dementia patients living in their country of origin. Specific aspects of mental health, including satisfaction with life and depression, need to be addressed in order to improve caregivers' quality of life. Given that mental health care resources may be scarce in Latin American countries, culturally appropriate interventions should focus on preventing/treating depression and promote life satisfaction, as a way to improve their quality of life.

  18. Caregiving in Dementia and its Impact on Psychological Functioning and Health-Related Quality of Life: Findings from a Colombian Sample.

    PubMed

    Moreno, Jhon Alexander; Nicholls, Elizabeth; Ojeda, Natalia; De los Reyes-Aragón, Carlos José; Rivera, Diego; Arango-Lasprilla, Juan Carlos

    2015-12-01

    Existing published studies about health-related quality of life (HRQOL) in caregivers of dementia patients living in Latin American countries are very limited. However, cultural aspects, personal values, and social structure may affect the way caregivers experience their role in different societies. The current study investigated the relationship between HRQOL and psychological factors using a cross-sectional design. The sample consisted of 102 informal caregivers of patients with dementia from Bogotá, Colombia, South America. Measures included the Patient Health Questionnaire (PHQ-9) for depression, the Satisfaction with Life Scale (SWLS), the Zarit Burden Interview, and the Short Health Questionnaire (SF36) for HRQOL. Canonical correlations revealed that there was a significant relationship between caregivers' mental health and HRQOL, such that caregivers with better satisfaction with life and less symptoms of depression had more vitality and better general health. There is a strong relationship between mental health and health-related quality of life in Colombian caregivers of dementia patients living in their country of origin. Specific aspects of mental health, including satisfaction with life and depression, need to be addressed in order to improve caregivers' quality of life. Given that mental health care resources may be scarce in Latin American countries, culturally appropriate interventions should focus on preventing/treating depression and promote life satisfaction, as a way to improve their quality of life. PMID:26290365

  19. Typical and atypical dementia family caregivers: systematic and objective comparisons.

    PubMed

    Nichols, Linda O; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy. PMID:21391405

  20. Characteristics of Depressed Caregivers of Veterans With Dementia.

    PubMed

    Bejjani, Carla; Snow, A Lynn; Judge, Katherine S; Bass, David M; Morgan, Robert O; Wilson, Nancy; Walder, Annette; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E

    2015-11-01

    This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention.

  1. PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol

    PubMed Central

    2012-01-01

    Background The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best placed to offer support to family caregivers and to recognise and respond to the burden of care giving on family members. The aim of this project is to develop a best practice model for engaging with and supporting family caregivers. Findings The project is framed as an exploratory trial for a subsequent implementation study, covering phases 0, I and II of the MRC (Medical Research Council) framework for development, design and evaluation of complex interventions. The project is a multi-method procedure and has two phases. In the first phase, which has already been completed, we used a reflective practice procedure where general practice teams were asked about how they currently deal with family caregivers. In the second phase, a participatory action research approach aims to improve identification and response to when support is necessary for family caregivers. Ten participating general practice teams each enrol 40 eligible patients and their family caregiver, to identify structures and tools feasible for use in their practice. Standardised self-reported questionnaires (Burden Scale for Family Caregivers and Quality of Life Questionnaire Core 15 Palliative) are being applied at study inclusion (prior to or during the implementation period) and after 6 and 12 months to explore implementation effects. Qualitative assessment of general practice teams’ experiences will be triangulated with the quantitative evaluation of the implementation. Discussion This two-step approach, which is appropriate to primary palliative care in the German health care context, will enable general practice teams to develop feasible, acceptable and successful strategies for the implementation of

  2. Family burden of schizophrenic patients and the welfare system; the case of Cyprus

    PubMed Central

    2013-01-01

    Background The shift from asylum to community care for mental health patients has burdened the providers of primary health care and, more than all, families. As a result, numerous studies [Soc Psychiatry Psychiatr Epidemiol 31:345–348, 1995, J Health Socisl Behav 36:138–150, 1995] have focused on the burden of care experienced by family members living with individuals with severe mental disorders. This kind of provision, also extols a significant cost to the society at large in terms of significant direct and indirect costs. A cost that may be even higher in times of severe socio-economic crisis. Methodology This study, firstly, aims to examine the burden that the family members experience by caring for individuals with schizophrenia and the identification of the parameters, in a micro and macro level, that affect family burden. Secondly, this study aims to investigate whether the welfare state will be fit to help vulnerable groups as the one studied, especially during economic crisis periods when austerity measures are being implemented into welfare systems. For data collection purposes this study employed the Involvement Evaluation Questionnaire [Schizophr Bull 1998, 24(4):609–618]. The sample consisted of caregivers either living in rural or urban areas of the district of Nicosia, the capital of the Republic of Cyprus. These people were attending regular meetings with their allocated Community Psychiatric Nurses (CPN) in Community Mental Health Centres (CMHC). Results Analysis of covariance (ANCOVA) was applied with the tension, the supervision, the worry, and the encouragement entering as dependent factors. In each case, participant’s age, gender, marital status, income, number of people living in the same house with the participant, degree of relationship between the caregiver and the person suffering from severe mental disorder, the age of the relative, and the gender of the relative, were entered as independent factors. Four ANCOVAs were performed

  3. Personality and Perceived Health in Spousal Caregivers of Patients with Lung Cancer: The Roles of Neuroticism and Extraversion.

    PubMed

    Hoerger, Michael; Coletta, Maria; Sörensen, Silvia; Chapman, Benjamin P; Kaukeinen, Kim; Tu, Xin; Duberstein, Paul R

    2016-01-01

    Purpose. Family members' responsibilities for patients with cancer have increased dramatically over the past decade and will likely continue to rise. Given that caregiving is associated with declines in self-care, there is a need for research on caregivers' perceptions of their own health. The purpose of this study was to examine whether personality is associated with four self-report perceived health items from the SF-36. Methods. The sample consisted of 114 spouses of lung cancer patients who completed cross-sectional measures as part of a larger cohort study on adjustment to the diagnosis and treatment of lung cancer. Predictors of interest were Neuroticism and Extraversion scores from the NEO-FFI. Covariates were age, gender, conscientiousness, depressive symptoms, and objective illness burden. Results. Multivariate analyses revealed that caregivers with higher Extraversion scores were less likely to respond affirmatively to the item "I expect my health to get worse" (OR = 0.90, p < 0.05). Neuroticism was associated with poorer perceived health (ORs from 1.11 to 1.12, p's < 0.05). Conclusions. The present cross-sectional findings suggest that personality is associated with responses to SF-36 perceived health items beyond what can be accounted for by objective illness burden and other covariates. The potential overestimation of health among extraverted caregivers may have implications for their health outcomes. PMID:27144023

  4. Personality and Perceived Health in Spousal Caregivers of Patients with Lung Cancer: The Roles of Neuroticism and Extraversion

    PubMed Central

    Hoerger, Michael; Coletta, Maria; Sörensen, Silvia; Chapman, Benjamin P.; Kaukeinen, Kim; Tu, Xin; Duberstein, Paul R.

    2016-01-01

    Purpose. Family members' responsibilities for patients with cancer have increased dramatically over the past decade and will likely continue to rise. Given that caregiving is associated with declines in self-care, there is a need for research on caregivers' perceptions of their own health. The purpose of this study was to examine whether personality is associated with four self-report perceived health items from the SF-36. Methods. The sample consisted of 114 spouses of lung cancer patients who completed cross-sectional measures as part of a larger cohort study on adjustment to the diagnosis and treatment of lung cancer. Predictors of interest were Neuroticism and Extraversion scores from the NEO-FFI. Covariates were age, gender, conscientiousness, depressive symptoms, and objective illness burden. Results. Multivariate analyses revealed that caregivers with higher Extraversion scores were less likely to respond affirmatively to the item “I expect my health to get worse” (OR = 0.90, p < 0.05). Neuroticism was associated with poorer perceived health (ORs from 1.11 to 1.12, p's < 0.05). Conclusions. The present cross-sectional findings suggest that personality is associated with responses to SF-36 perceived health items beyond what can be accounted for by objective illness burden and other covariates. The potential overestimation of health among extraverted caregivers may have implications for their health outcomes. PMID:27144023

  5. Psychological morbidity and autonomic reactivity to emotional stimulus in parental cancer: a study with adult children caregivers.

    PubMed

    Teixeira, R J; Pereira, M G

    2014-01-01

    Literature suggests that parental cancer can provoke aversive emotional arousal in adult children, who may perceive caregiving as a traumatic experience. Limited research has been conducted on emotional and physiological impact of family caregiving for cancer patients undergoing chemotherapy. The aim of the present study was to examine psychological and physiological responses in parental cancer's caregivers. Two matched groups of adult children, with 78 participants each (parental cancer vs. control), completed psychological measures of distress, post-traumatic stress disorder (PTSD) symptoms, and burden. Additionally, each participant visualised standardised pictures with different emotional valences, while cardiovascular (heart rate) and electrodermal responses (skin conductance) were recorded. Between-group analysis showed significant differences on all psychological variables, and on skin conductance for all types of pictures. However, for the heart rate responses, differences were found only for pictures with unpleasant emotional arousal. In the parental cancer group, the heart rate peak response stood out as a predictor of PTSD symptoms, after controlling for distress and burden. This study highlights the important role of psychophysiological measures of family caregiving in oncology. Physiological responses may explain a higher prevalence of PTSD symptoms. Therefore, biofeedback combined with targeted psychosocial interventions for relaxation could be of great clinical value for this population.

  6. Caregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving

    PubMed Central

    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. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Methods: Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver–care recipient (CR) dyads was videotaped during typical interactions. Results: Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. Implications: The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver–CR dyads. PMID:21335422

  7. Extent and pattern of burden of care and its associated factors among Eritrean families of persons living with schizophrenia: a cross-sectional study

    PubMed Central

    Hidru, Tesfaldet Habtemariam; Osman, Mohammed Hamid; Lolokote, Sainyugu; Li, Xiaofeng

    2016-01-01

    Purpose To assess the caregiving burden and its associated factors among Eritrean families of persons living with schizophrenia. Methods A cross-sectional study was conducted for 146 caregivers with their respective known patients with schizophrenia of Saint Mary's Neuropsychiatric National Referral Hospital (SMNNRH). Data were collected using Pai and Kapur's Family Burden Interview Schedule (FBIS), the Positive and Negative Syndrome Scale (PANSS) and self-prepared sociodemographic sheet. Data were analysed using SPSS V.21. Descriptive statistics, independent t-tests, one-way analysis of variance (ANOVA) and multiple regression analysis was employed to analyse the data. Results In this study, 84 (57.5%) were males and 62 (42.5%) were females. The mean age was 33.96+10.37 (median=31) for the patients and 46.76+13.96 (median=48) for the caregivers. Total mean objective score was 29.47+6.67. Family caregivers who were single (F=3.224, p<0.005, effect size (ES)=0.064), had educational level at elementary (F=5.647 p=0.001, ES=0.11), had low monthly income (t=7.727, p<0.001, ES=0.01) and were dissatisfied with family support (t=2.889, p<0.01, ES=0.01) experienced greater burden relative to the counterparts. Caregiver's age (β=0.156; p<0.05), duration of caregiving (β=0.131; p<0.05), monthly household family income (β=−0.298; p<0.001), history of self-injury (β=0.151; p=0.05), positive scale (β=0.344; p<0.001), negative scale (β=0.278; p<0.001) and general psychopathological scale (β=0.146; p<0.01) emerged as significant predictors of objective burden. Conclusions Family caregivers of a person living with schizophrenia experience a significant burden of care. Our findings highlight that there is a need of strengthening social and psychological support to reduce the caregiving burden. PMID:27683516

  8. Caregivers' Guide to Medications and Aging

    MedlinePlus

    ... content Search form Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants ... Family Caregiver Alliance by Kathleen A. Cameron, R.Ph., M.P.H., Executive Director, American Society of ...

  9. Cognitive and Socioemotional Caregiving in Developing Countries

    PubMed Central

    Bornstein, Marc H.; Putnick, Diane L.

    2011-01-01

    Enriching caregiving practices foster the course and outcome of child development. We studied two developmentally significant domains of positive caregiving -- cognitive and socioemotional -- in more than 127,000 families with under-5 year children from 28 developing countries. Mothers varied widely in cognitive and socioemotional caregiving and engaged in more socioemotional than cognitive activities. More than half of mothers played with their children and took them outside, but only a third or fewer read books and told stories to their children. The GDP of countries related to caregiving after controlling for life expectancy and education. The majority of mothers report that they do not leave their under-5s alone. Policy and intervention recommendations are elaborated. PMID:22277006

  10. Medicare and Caregivers: Planning for Medical Care

    MedlinePlus

    ... turn Javascript on. Medicare and Caregivers Planning for Medical Care If you find that an older relative ... friend needs your help to deal with a medical condition, there are a number of steps you ...

  11. Alzheimer's Caregivers - Multiple Languages: MedlinePlus

    MedlinePlus

    ... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Alzheimer's Caregivers URL of this page: https://medlineplus.gov/languages/alzheimerscaregivers.html Other topics A-Z A B ...

  12. Medicare and Caregivers: Illness and Hospitilization

    MedlinePlus

    ... version of this page please turn Javascript on. Medicare and Caregivers Illness and Hospitalization Facing a chronic ... and give you Medicare-covered services. When Does Medicare Cover Hospital Care? If a person needs to ...

  13. Perceptions of Burden in Patients With Late-Stage Cancer and Their Caregivers

    ClinicalTrials.gov

    2015-05-27

    Brain and Central Nervous System Tumors; Chronic Myeloproliferative Disorders; Depression; Leukemia; Lymphoma; Multiple Myeloma and Plasma Cell Neoplasm; Myelodysplastic Syndromes; Myelodysplastic/Myeloproliferative Neoplasms; Psychosocial Effects of Cancer and Its Treatment; Unspecified Adult Solid Tumor, Protocol Specific

  14. Family Caregivers and Consumer Health Information Technology.

    PubMed

    Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L

    2016-01-01

    Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.

  15. African-American caregivers' breast health behavior.

    PubMed

    Inoue, Megumi; Pickard, Joseph G; Welch-Saleeby, Patricia; Johnson, Sharon

    2009-10-01

    This study utilizes a stress and coping framework which includes cognitive appraisal, personal and environmental resources, coping and stress to examine factors related to African-American caregivers' breast cancer screenings, including mammograms, clinical examinations and self-examinations. Using data from the Black Rural and Urban Caregivers Mental Health and Functioning Study, we performed separate logistic regressions for each type of breast cancer screening. Results reveal that having a regular doctor checkup (coping), care recipients having a cancer diagnosis (cognitive appraisal, and living in urban areas (environment resources) are associated with receiving a mammogram. Having greater income, having at least a high school degree (both personal resources) and having a regular doctor checkup (coping) are associated with receiving a clinical examination. Increased caregiver strain (stress), being 40 years old or older, social support (coping) and living in rural areas are associated with performing a self-examination. Targeting African-American caregivers, particularly in rural areas, for increased education on the importance of receiving breast cancer screenings is crucial to addressing health disparities. Making resources available, encouraging caregivers to get a clinical examination and a mammogram and directing public education toward caregivers are important points of intervention.

  16. Depressive symptoms amongst asthmatic children's caregivers.

    PubMed

    Szabó, Alexandra; Mezei, Györgyi; Kovári, Eva; Cserháti, Endre

    2010-06-01

    We wanted to find out, whether the number of depressive symptoms is higher amongst asthmatic children's caregivers, compared to international data, to the Hungarian population average, and to parents of children with chronic renal disease. Are these depressive symptoms connected to the children's psychological status, asthma severity or current asthma symptoms? One-hundred and eight, 7- to 17-yr-old asthmatic children were enrolled, who have been treated at the Semmelweis University, First Department of Pediatrics. Children were suffering from asthma for at least 1 yr, with a median of 8 yr (1-16 yr), they started to develop asthmatic symptoms between the age of 0.5-14 yr (median: 3 yr). We also identified 27 children with chronic renal diseases and their caregivers, who functioned as a control group. Children were asked to complete the Hungarian-validated versions of the Child Depression Inventory, the Spielberger State Anxiety Inventory for Children and the Juniper Pediatric Asthma Quality of Life Questionnaire. Asthma severity and current symptoms were also documented, 56% had no symptoms on the preceding week. Caregivers were asked to complete the Hungarian versions of the Beck Depression Inventory (BDI) short form, the Spielberger Anxiety Inventory and the Juniper Pediatric Asthma Caregivers' Quality of Life Questionnaire. Caregivers of asthmatic children had significantly more depressive symptoms (7.73 +/- 6.69 s.d.) than the age-specific normal population (p < 0.01). Caregivers of renal patients also experience more depressive symptoms (9.61 +/- 7.43 s.d.) than their healthy peers, but difference between the two chronic diseases' group did not prove to be significant. Asthmatic children's caregivers who scored more points on the BDI than the population average suffer from more anxiety symptoms, but their quality of life is not worse than the caregivers' with less depressive points. Depressive symptoms were neither connected to the children's psychological

  17. Gust alleviation - Criteria and control laws

    NASA Technical Reports Server (NTRS)

    Rynaski, E. G.

    1979-01-01

    The relationships between criteria specified for aircraft gust alleviation and the form of the control laws that result from the criteria are considered. Open-loop gust alleviation based on the linearized, small perturbation equations of aircraft motion is discussed, and an approximate solution of the open-loop control law is presented for the case in which the number of degrees of freedom of the aircraft exceeds the rank of the control effectiveness matrix. Excessive actuator lag is compensated for by taking into account actuator dynamics in the equations of motion, resulting in the specification of a general load network. Criteria for gust alleviation when output motions are gust alleviated and the closed-loop control law derived from them are examined and linear optimal control law is derived. Comparisons of the control laws reveal that the effectiveness of an open-loop control law is greatest at low aircraft frequencies but deteriorates as the natural frequency of the actuators is approached, while closed-loop methods are found to be more effective at higher frequencies.

  18. Alleviation of Communication Apprehension: An Individualized Approach.

    ERIC Educational Resources Information Center

    Watson, Arden K.

    Communication apprehension (CA) affects from 15% to 20% of the college population, indicating inherent problems of negative cognitive appraisal, conditioned anxiety, or skills deficits. Use of an individualized approach to the alleviation of CA has been shown to increase students' class interaction and to improve their verbal skills. During an…

  19. Burden of Proof in Bioethics.

    PubMed

    Koplin, Julian J; Selgelid, Michael J

    2015-11-01

    A common strategy in bioethics is to posit a prima facie case in favour of one policy, and to then claim that the burden of proof (that this policy should be rejected) falls on those with opposing views. If the burden of proof is not met, it is claimed, then the policy in question should be accepted. This article illustrates, and critically evaluates, examples of this strategy in debates about the sale of organs by living donors, human enhancement, and the precautionary principle. We highlight general problems with this style of argument, and particular problems with its use in specific cases. We conclude that the burden ultimately falls on decision-makers (i.e. policy-makers) to choose the policy supported by the best reasons.

  20. Non-pharmacological interventions for caregivers of patients with schizophrenia: A meta-analysis.

    PubMed

    Chen, Li-Fen; Liu, Jia; Zhang, Jing; Lu, Xiao-Qin

    2016-01-30

    It has been estimated that about 50-80% of patients with schizophrenia live with or closely contact with their caregivers, and rely on them for housing, and emotional and financial supports. Caregiving experience is usually described as stressful for their caregivers. Non-pharmacological interventions seem to be beneficial to improving life quality. However, there is still no meta-analysis focused on this topic to give an overview.We searched the electronic databases includingPubMed, EMBASE, CINAHL, Cochrane Library and China National Knowledge Infrastructure, respectively from the beginning of database to July 2015 for all the randomized controlled trialsevaluating the caregiver interventions. Continuous data were expressed mean differences (MD) with 95% confidential intervals (CIs). Standardized mean difference was planned to express, if different scales were used to measure the same outcome. We pooled the results using a random-effect model.As a result, nine studies met the inclusion criteria, comprising 608 randomized participants. In which, 321 participants were in interventional group, while 287 participants were in control group. Concerning the care burden, there was significant difference found between non-pharmacological interventions and control groups (n=290, MD -2.10, 95% CI -3.46 to -0.74, P=0.002; level of heterogeneity τ(2)=1.81, χ(2)=62.13, df=3, P<0.00001, I(2)=95%). However, no differences were found in family support, family functioning and satisfaction. Of note, our meta-analysis demonstrated the efficacy of non-pharmacological interventions for caregivers of schizophrenia, and supported the application in the clinical practice. However, all the conclusions should be explained cautiously and further confirmation is required by well-designed trials with large sample.

  1. Turnabout. White Man's Burden and the Black Man's Burden.

    ERIC Educational Resources Information Center

    Beck, Bernard

    1996-01-01

    Examines the movie "White Man's Burden" and, by its reversing of social ideologies and stereotypes, the questions arising from it about race relations in America. The author addresses the movie's shortcomings in dealing with race relations in part because it leaves intact ideologies and moralities based on class without defining sociological or…

  2. BURDEN FALLS ROADLESS AREA, ILLINOIS.

    USGS Publications Warehouse

    Klasner, John S.; Thompson, Robert M.

    1984-01-01

    The Burden Falls Roadless Area lies in the Shawnee National Forest of southern Illinois, about 5 mi west of the western edge of the Illinois-Kentucky fluorspar district. Geologic mapping and geochemical surveys indicate that the area has little promise for the occurrence of fluorspar and associated minerals; other special studies also indicate little promise for oil and gas and construction materials. Traces of gold and silver were detected in some geochemical samples but follow-up studies indicate little promise for the occurrence of resources of these metals within the Burden Falls Roadless Area.

  3. Relationships Between Caregiver Violence Exposure, Caregiver Depression, and Youth Behavioral Health Among Homeless Families

    PubMed Central

    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 trauma exposure among homeless families, in order to better serve the needs of this vulnerable population. The objective of this study is to explore the relationships between caregiver exposure to violence, caregiver depression, and youth depression and behavioral problems among homeless families. Preliminary findings indicate that among this sample of homeless families, caregiver violence exposure has statistically significant relationships with both youth behavioral problems and youth depression symptoms, as mediated by caregiver depression. These findings indicate that youth behavioral health is associated with caregiver mental health, which, in turn, is associated with caregiver trauma exposure. This highlights the importance of taking into account adult mental health while treating youth externalizing and internalizing behaviors and ensuring that caregivers, too, have access to adequate treatment and supports. Furthermore, this treatment should be trauma informed, given the link between trauma and mental health. PMID:26420978

  4. The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program

    ERIC Educational Resources Information Center

    Hepburn, Kenneth W.; Lewis, Marsha; Sherman, Carey Wexler; Tornatore, Jane

    2003-01-01

    Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the…

  5. Children's Attachment Relationships with Day Care Caregivers: Associations with Positive Caregiving and the Child's Temperament

    ERIC Educational Resources Information Center

    De Schipper, J. Clasien; Tavecchio, Louis W. C.; Van IJzendoorn, Marinus H.

    2008-01-01

    In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamentally irritable children compared to less…

  6. The cost of caregiving: endocrine and immune implications in elderly and non elderly caregivers.

    PubMed

    Lovell, Brian; Wetherell, Mark A

    2011-05-01

    This review will provide an overview of literature that has linked caregiver stress with development and progression of disease, via interactions between the hypothalamic-pituitary-adrenal (HPA) axis and immune systems. The link between caregiver stress and dysregulation of key physiologic mediators has, in the main, focussed on elderly caregivers of spouses with degenerative illness, i.e., dementia. In these populations, aberrations of both endocrinological and immunologic mediators have been demonstrated. However, as a function of their advancing age, elderly populations experience natural dysregulation of the HPA axis and decline of immunologic efficacy. More recently, research has begun to assess whether caregiver stress exacts a similar physiologic toll on non elderly caregivers, i.e., parents of medically fragile children. Dysregulation of endocrinological and immunologic mediators have been observed in both populations, however, more consistently so in the elderly. The authors suggest that, by considering specific characteristics of the care recipient, i.e., type of impairment, and concomitant changes in the caregiving experience, i.e., caregiving intensity, as well as the role of dyadic support, researchers might be better poised to explain discrepant physiologic findings between elderly and non elderly caregivers and reconcile similar physiologic inconsistencies between different, non elderly populations.

  7. Counselors as Caregivers: The Validation of the Counselor Caregiving Questionnaire (CCQ)

    ERIC Educational Resources Information Center

    Fitch, Jenelle C.

    2008-01-01

    This research is a validation study of the Counselor Caregiving Questionnaire (CCQ). Doctoral-level students (N = 188) in clinical and counseling psychology training programs completed the following questionnaires: (a) Counselor Caregiving Questionnaire (Fitch & Pistole, 2006), (b) Relationship Questionnaire (Bartholomew & Horowitz, 1991), (c)…

  8. Demographic and socio-economic influences on community-based care and caregivers of people with dementia in China

    PubMed Central

    Lang, Linda; Clifford, Angela; Chen, Yang; Han, Thang S

    2016-01-01

    Background Dementia is a major public health challenge and China has the largest population with dementia in the world. However, dementia care and caregivers for Chinese are less investigated. Objectives and design To evaluate demographic and socio-economic influences on dementia care, management patterns and caregiver burden in a household community-dwelling-based survey, using participants’ care receipts and Zarit scale. Setting and participants Rural and urban communities across six provinces of China comprising 4837 residents aged ≥60 years, in whom 398 had dementia and 1312 non-dementia diseases. Results People with dementia were less likely to receive care if they were living in rural compared to urban areas (Odd ratio (OR) = 0.20; 95%CI: 0.10–0.41), having education level below compared to above secondary school (OR = 0.24; 95%CI: 0.08–0.70), manual labourer compared to non-manual workers (OR = 0.27; 95%CI: 0.13–0.55), having personal annual income below RMB 10,000 yuan (£1000) compared to above (OR = 0.37; 95%CI: 0.13–0.74) or having four or more than compared to less four children (OR = 0.52; 95%CI: 0.27–1.00). Caregivers for dementia compared with those for non-dementia diseases were younger and more likely to be patients’ children or children in-law, had lower education and spent more caring time. Caregiver burden increased with low education, cutback on work and caring for patients who were younger or living in rural areas, and this caregiver burden was three-fold greater than that for non-dementia diseases. Conclusions There are a number of inequalities in dementia care and caregiver burden in China. Reducing the socio-economic gap and increasing education may improve community care for people with dementia and preserve caregivers’ well-being. PMID:27478589

  9. A Randomized Controlled Trial of Clinician-Supported Problem-Solving Bibliotherapy for Family Caregivers of People With First-Episode Psychosis

    PubMed Central

    Chien, Wai Tong; Thompson, David R.; Lubman, Dan I.; McCann, Terence V.

    2016-01-01

    Family interventions for first-episode psychosis (FEP) are an integral component of treatment, with positive effects mainly on patients’ mental state and relapse rate. However, comparatively little attention has been paid to the effects of family interventions on caregivers’ stress coping and well-being, especially in non-Western countries. We aimed to test the effects of a 5-month clinician-supported problem-solving bibliotherapy (CSPSB) for Chinese family caregivers of people with FEP in improving family burden and carers’ problem-solving and caregiving experience, and in reducing psychotic symptoms and duration of re-hospitalizations, compared with those only received usual outpatient family support (UOFS). A randomized controlled trial was conducted across 2 early psychosis clinics in Hong Kong, where there might be inadequate usual family support services for FEP patients. A total of 116 caregivers were randomly selected, and after baseline measurement, randomly assigned to the CSPSB or UOFS. They were also assessed at 1-week and 6- and 12-month post-intervention. Intention-to-treat analyses were applied and indicated that the CSPSB group reported significantly greater improvements in family burden and caregiving experience, and reductions in severity of psychotic symptoms and duration of re-hospitalizations, than the UOFS group at 6- and 12-month follow-up. CSPSB produces moderate long-term benefits to caregivers and FEP patients, and is a low-cost adjunct to UOFS. PMID:27147450

  10. Does becoming an ADL spousal caregiver increase the caregiver's depressive symptoms?

    PubMed

    Dunkle, Ruth E; Feld, Sheila; Lehning, Amanda J; Kim, Hyunjee; Shen, Huei-Wern; Kim, Min Hee

    2014-11-01

    This study investigated whether transitioning into the role of activities of daily living (ADL) spousal caregiver is associated with increased depressive symptoms for older husbands and wives among a sample of coresiding community-dwelling older couples. Using data from the Health and Retirement Study, we estimated a two-level linear model to examine the association between change in caregiver status and respondents' depressive symptoms at follow-up, controlling for other factors identified in Pearlin's stress process model (PSPM). Results indicate that both husbands and wives who become ADL caregivers have more follow-up depressive symptoms than noncaregivers. Furthermore, wives continuing as caregivers have more follow-up depressive symptoms than wives who do not provide care. Finally, the physical health of the spousal caregiver is related to depressive symptoms at follow-up. We conclude with policy and practice implications of these three main findings. PMID:25651543

  11. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors.

    PubMed

    Bakas, Tamilyn; Burgener, Sandy C

    2002-01-01

    Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus' theory of stress and coping. Predictors of emotional distress (R(2) =.48, p <.001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R(2) =.25, p <.001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R(2) =.45, p <.001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.

  12. Common ground on object use associates with caregivers' gesturese.

    PubMed

    Dimitrova, Nevena; Moro, Christiane

    2013-12-01

    Caregivers modify their communication when interacting with infants, and these modifications have been related to children's language development. However, the factors influencing caregivers' modification of gestures are understudied. This study examined whether infants' object knowledge, considered as common ground shared with the caregiver, relates to caregivers' gesturese. Six caregiver-infant dyads were videotaped every two months for 15 min in their homes, from child age 8-to-16 months, while they played with two separate objects (i.e. toys). Results indicated that the changes in infants' object knowledge were paralleled by associated changes in caregivers' gestures: parents increased both the amount and the complexity of their gestures.

  13. Monetising the provision of informal long-term care by elderly people: estimates for European out-of-home caregivers based on the well-being valuation method.

    PubMed

    Schneider, Ulrike; Kleindienst, Julia

    2016-09-01

    Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the 'shadow value' of informal care, an imputed value for the non-market activity. We use data from the 2006-2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non-co-resident caregivers. To estimate net costs, we follow the subjective well-being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time-intensive out-of-home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care-giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them. PMID:25939856

  14. Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and well-being.

    PubMed

    McConaghy, Ronelle; Caltabiano, Marie Louise

    2005-06-01

    This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well-being of carers of persons with dementia. Forty-two carers aged between 21 and 88 years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross-sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)-12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well-being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

  15. The Last Days of Life: Symptom Burden and Impact on Nutrition and Hydration in Cancer Patients

    PubMed Central

    Hui, David; Dev, Rony; Bruera, Eduardo

    2016-01-01

    Purpose of review We will review the symptom burden in cancer patients in the last days of life, its impact on nutrition and hydration, and the role of artificial nutrition and hydration in patients with days of life expectancy. Recent findings In the last days of life, cancer patients often experience progressive functional decline and worsening symptom burden. Many symptoms such as anorexia-cachexia, dysphagia and delirium could impair oral intake. These, coupled with refractory cachexia, contribute to persistent weight loss and decreased quality of life. Furthermore, the inability to eat/drink and body image changes can result in emotional distress for patients and caregivers. Clinicians caring for these individuals need to ensure longitudinal communication about goals of care, education about the natural process of dying, optimization of symptom management, and provide appropriate emotional support for patients and caregivers. There is a lack of evidence to support that artificial nutrition and hydration can improve outcomes in the last days of life. Artificial nutrition is not recommended because of its invasive nature, while artificial hydration may be considered on a case-by-case basis. Summary This review highlights the need to conduct further research on symptom burden, nutrition and hydration in the last days of life. PMID:26509860

  16. Caregiver-mediated intervention can improve physical functional recovery of patients with chronic stroke: a randomized controlled trial.

    PubMed

    Wang, Tzu-Chi; Tsai, Alan C; Wang, Jiun-Yi; Lin, Yu-Te; Lin, Ko-Long; Chen, Jiun Jiang; Lin, Bei Yi; Lin, Tai Ching

    2015-01-01

    Background and Purpose. Patients with chronic stroke may benefit from continuing rehabilitation training after hospital discharge. This study examined whether caregiver-mediated, home-based intervention (CHI) could improve physical functioning and social participation in these patients. Methods. A single-blind, randomized, controlled 12-week trial conducted with 51 patients from 3 hospitals in Taiwan who had chronic stroke (>6 months; Brunnstrom recovery stages III-V). Patients and their caregivers in the intervention arm (n = 25) were given weekly personalized CHI trainings designed by a physical therapist. Patients in the control arm (n = 26) received visits from the therapist without intervention. All were evaluated for physical recovery through the Stroke Impact Scale, Berg Balance Scale, 10-Meter Walk Test, 6-Minute Walk Test, and Barthel Index at baseline and endpoint. Caregivers were evaluated with the Caregiver Burden Scale. Results were analyzed through Mann-Whitney U test. Results. CHI significantly improved scores of the Stroke Impact Scale: strength (control vs intervention, respectively: 1.4 vs 15.5; P = .002), mobility (-0.5 vs 13.7; P < .001), composite physical (-0.7 vs 11.2; P < .001), and general recovery domain (0.2 vs 17.4; P < .001). CHI also significantly improved free-walking velocity (-1.4 vs 7.5 cm/s; P = .006), 6-minute walk distance (-10.5 vs 15.8 m; P = .003), Berg Balance Scale score (-0.8 vs 4.5; P = .006), and Barthel Index score (0.6 vs 7.2; P = .008). CHI did not significantly increase caregiver burden at endpoint. Conclusion. CHI can improve physical functional recovery and, possibly, social participation in patients with chronic stroke.

  17. Aerodynamic side-force alleviator means

    NASA Technical Reports Server (NTRS)

    Rao, D. M. (Inventor)

    1980-01-01

    An apparatus for alleviating high angle of attack side force on slender pointed cylindrical forebodies such as fighter aircraft, missiles and the like is described. A symmetrical pair of helical separation trips was employed to disrupt the leeside vortices normally attained. The symmetrical pair of trips starts at either a common point or at space points on the upper surface of the forebody and extends along separate helical paths along the circumference of the forebody.

  18. Gust Alleviation Using Direct Gust Measurement

    NASA Technical Reports Server (NTRS)

    Hoppe, Sven Marco

    2000-01-01

    The increasing competition in the market of civil aircraft leads to operating efficiency and passenger comfort being very important sales arguments. Continuous developments in jet propulsion technology helped to reduce energy consumption, as well as noise and vibrations due to the engines. The main problem with respect to ride comfort is, however, the transmittance of accelerations and jerkiness imposed by atmospheric turbulence from the wings to the fuselage. This 'gust' is also a design constraint: Light airplane structures help to save, energy, but are more critical to resist the loads imposed by turbulence. For both reasons, efficient gust alleviation is necessary to improve the performance of modern aircraft. Gust can be seen as a change in the angle of attack or as an additional varying vertical component of the headwind. The effect of gust can be very strong, since the same aerodynamic forces that keep the airplane flying are involved. Event though the frequency range of those changes is quite low, it is impossible for the pilot to alleviate gust manually. Besides, most of the time during the flight, the, autopilot maintains course and the attitude of flight. Certainly, most autopilots should be capable of damping the roughest parts of turbulence, but they are unable to provide satisfactory results in that field. A promising extension should be the application of subsidiary, control, where the inner (faster) control loop alleviates turbulence and the outer (slower) loop controls the attitude of flight. Besides the mentioned ride comfort, another reason for gust alleviation with respect to the fuselage is the sensibility of electrical devices to vibration and high values of acceleration. Many modern airplane designs--especially inherently instable military aircraft--are highly dependent on avionics. The lifetime and the reliability of these systems is thus essential.

  19. The Economic Burden Attributable to a Child’s Inpatient Admission for Diarrheal Disease in Rwanda

    PubMed Central

    Ngabo, Fidele; Mvundura, Mercy; Gazley, Lauren; Gatera, Maurice; Rugambwa, Celse; Kayonga, Eugene; Tuyishime, Yvette; Niyibaho, Jeanne; Mwenda, Jason M.; Donnen, Philippe; Lepage, Philippe; Binagwaho, Agnes; Atherly, Deborah

    2016-01-01

    Background Diarrhea is one of the leading causes of childhood morbidity and mortality. Hospitalization for diarrhea can pose a significant burden to health systems and households. The objective of this study was to estimate the economic burden attributable to hospitalization for diarrhea among children less than five years old in Rwanda. These data can be used by decision-makers to assess the impact of interventions that reduce diarrhea morbidity, including rotavirus vaccine introduction. Methods This was a prospective costing study where medical records and hospital bills for children admitted with diarrhea at three hospitals were collected to estimate resource use and costs. Hospital length of stay was calculated from medical records. Costs incurred during the hospitalization were abstracted from the hospital bills. Interviews with the child’s caregivers provided data to estimate household costs which included transport costs and lost income. The portion of medical costs borne by insurance and household were reported separately. Annual economic burden before and after rotavirus vaccine introduction was estimated by multiplying the reported number of diarrhea hospitalizations in public health centers and district hospitals by the estimated economic burden per hospitalization. All costs are presented in 2014 US$. Results Costs for 203 children were analyzed. Approximately 93% of the children had health insurance coverage. Average hospital length of stay was 5.3 ± 3.9 days. Average medical costs for each child for the illness resulting in a hospitalization were $44.22 ± $23.74 and the total economic burden was $101, of which 65% was borne by the household. For households in the lowest income quintile, the household costs were 110% of their monthly income. The annual economic burden to Rwanda attributable to diarrhea hospitalizations ranged from $1.3 million to $1.7 million before rotavirus vaccine introduction. Conclusion Households often bear the largest share

  20. Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

    PubMed

    Branger, Camille; Burton, Rachel; O'Connell, Megan E; Stewart, Norma; Morgan, Debra

    2016-07-01

    Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. PMID:24951255