Quality of Life among Primary Caregivers of Women with Breast Cancer: A Review

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Jawad Ghaleb Obaidi

2013-04-01

Full Text Available Background: Cancer diagnosis has a significant impact not only on women, but also on their Primary caregivers. Understanding the effects of a breast cancer diagnosis on physical and mental health outcomes in caregivers is important because these variables are key components of quality of life. Quality of life is a multi-dimensionalconstruct measuring overall enjoyment of life. This study intends to describe the impact of caring for women with breast cancer on the quality of life among their primary caregivers.Method: We conducted a comprehensive search in PubMed, MEDLINE andCINAHL. In addition, we used the web search engine “Google” for abstracts from 2007 to 2012. A total of eight studies were reviewed that met the following inclusion criteria: adult women with breast cancer, research conducted in English. Studies ranged from 2007-2011. The total sample size in the eight studies on adult caregivers totaled 789 participants. The average age of participants in all of the studies was 49.55 years.There were seven studies that had a quantitative focus,which mainly used a questionnaire and survey to estimate quality of life among primary caregivers. The qualitative approach included in-depth interviews and a focus group.Results: Accumulating evidence has supported the concept that cancer affects not only the patients but also their primary caregiver's quality of life.They face multiple challenges in caring for women with breast cancer, including physical, emotional, social, and financial stress that affects the caregiver's quality of life.Conclusion: Breast cancer diagnosis not only affects the patient's quality of life, but in parallel, also affects the quality of life of the primary caregiver. Thus more focus should be placed on providing moral and social support, and educational resources to improve the level of the caretaker's quality of life.

Association between Primary Caregiver Education and Cognitive and Language Development of Preterm Neonates.

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Asztalos, Elizabeth V; Church, Paige T; Riley, Patricia; Fajardo, Carlos; Shah, Prakesh S

2017-03-01

Objective  This study aims to explore the association between primary caregiver education and cognitive and language composite scores of the Bayley Scales of Infant and Toddler Development, 3rd ed. (Bayley-III) in preterm infants at 18 to 21 months corrected age. Design  An observational study was performed on preterm infants born before 29 weeks' gestation between 2010 and 2011. Primary caregivers were categorized by their highest education level and cognitive and language composite scores of the Bayley-III were compared among infants between these groups with adjustment for perinatal and neonatal factors. Results  In total, 1,525 infants/caregivers were included in the multivariate analysis. Compared with those with less than a high school education, infants with primary caregivers who received partial college/specialized training displayed higher cognitive (adjusted difference [AD]: 4.6, 95% confidence interval [CI]: 1.8-7.4) and language scores (AD: 4.0, 95% CI: 0.8-7.1); infants with primary caregivers with university graduate education or above also demonstrated higher cognitive (AD: 6.4, 95% CI: 2.6-10.1) and language scores (AD: 9.9, 95% CI: 5.7-14.1). Conclusion  Higher levels of education of the primary caregiver were associated with increased cognitive and language composite scores at 18 to 21 months corrected age in preterm infants. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Caregivers' satisfaction and supervision of primary health care ...

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Caregivers' satisfaction and supervision of primary health care services in Nnewi, ... made in the reduction of childhood health indicators in the previous decade, ... supervision of PHCs should also improve the quality of child health services.

Psychological distress of female caregivers of significant others with cancer

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Tony Cassidy

2015-12-01

Full Text Available This study explored the role of time since diagnosis and whether the care recipient was a child, a parent, or a spouse, on caregiver’s perceptions of the caring role, with a group of 269 female cancer caregivers. Questionnaire measures were used to explore psychological and social resources and psychological distress. Analysis of variance and hierarchical multiple regression were used and identified significant effects of time since diagnosis and care recipient. This study concludes that a more tailored approach to understanding the needs of caregivers is required particularly in terms of time since diagnosis and care recipient, in order to provide more effective support.

Family functioning and depression in primary caregivers of stroke patients in China

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Yuan-li Guo; Yan-jin Liu

2015-01-01

Objective: To determine the relationship between family functioning and depression in primary caregivers of stroke survivors in China. Design: Baseline cross-sectional data from an intervention study for stroke survivors and their families were used. Setting: Neurology inpatient service of a large urban hospital. Participants: Stroke survivors (n = 180), each with a primary caregiver, were enrolled in this study. The mean age of stroke survivors was 65.60 years, and the mean age of p...

Cultural significance of primary teeth for caregivers in Northeast Brazil.

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Nations, Marilyn K; Calvasina, Paola Gondim; Martin, Michele N; Dias, Hilma Fontenele

2008-04-01

This anthropological study critically evaluates Brazilian caregivers' symbolic production and significance of their malnourished offspring's primary teeth, as well as their own, and describes popular dental practices. From January to June 2004, ethnographic interviews of 27 poor, low-literacy mothers were conducted at a public Malnutrition Treatment Center in Fortaleza, Ceará State. Participant observation of clinical pathways and home environments supplemented the data. Content analysis was performed. Results confirm that primary teeth are imbued with cultural significance in Northeast Brazil. Mothers examine mouths, perceive signs of decay, associate primary with permanent tooth healthiness, identify ethnodental illnesses, seek assistance, and perform rituals with exfoliated teeth. The mother's motivation to care for primary teeth is sparked by her memories of past toothache and attempts to avoid stigma and discrimination. Social determinants, not mothers' beliefs or behaviors, are the most critical obstacles to effective dental care. Legitimizing lay knowledge and empowering caregivers and children can improve oral health in Northeast Brazil.

Factors Related to Perceived Needs of Primary Caregivers of Patients with Schizophrenia

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Ling-Ling Yeh

2008-08-01

Conclusion: Four clusters of caregivers' perceived needs were identified and found to be related to psychopathologic and demographic factors. These data are of value in designing appropriate community psychiatric programs to improve the quality of care and enhance the capacity of primary caregivers to care for patients.

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

DEFF Research Database (Denmark)

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

2014-01-01

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

Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers.

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Adams, Deana; Dahdah, Marie

2016-06-27

Qualitative research methods allowed the investigator to contribute to the development of new theories and to examine change in processes over time, which added rich detail to existing knowledge of the use of coping and adaptive strategies by traumatic brain injury survivors and their primary caregivers (Ponsford, Sloan, & Snow, 2013). The advantages of phenomenological study were that it allows flexibility to explore and understand meanings attached by people to well-studied concepts such as coping, resiliency, and adaptation or compensation. Phenomenological study was sensitive to contextual factors. It also permitted the study of in-depth dynamics of coping and adaptive strategies of TBI survivors and primary caregivers, while understanding the social and psychological implications of the phenomenon. To explore the needs and deficits of adult traumatic brain injury (TBI) survivors and primary caregivers; and to identify their self-initiated coping and adaptive strategies. Significant to this study was the development of coping and adaptive strategies by the participants after their discharge from inpatient and rehabilitation treatment. The compensatory skills taught in treatment settings did not transfer to the home environment. Therefore, these strategies developed independently from previous treatment recommendations contributed to the development of theory related to rehabilitation and counseling. Distinctive to this study was the similarity of coping and adaptive strategies developed from both mild and severe traumatic brain injury survivors. This study consisted of eleven with TBI and six primary caregivers (N = 17), who participated in a series of semi-structured interviews aimed at discovering the coping and adaptive strategies utilized in dealing with the effects of brain injury. A Qualitative Phenomenological design was employed. Patience and understanding, support, and professional help were identified by TBI survivors and caregivers as being their

Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome.

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Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L

1999-10-01

Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.

Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.

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Hsiao, Chiu-Yueh

2010-12-01

The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.

[Association between anxiety and coping strategies employed by primary caregivers of bedridden patients].

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Cedillo-Torres, Arianna Gabriela; Grijalva, María Guadalupe; Santaella-Hidalgo, Guadalupe B; Cuevas-Abad, Martha; González Pedraza-Avilés, Alberto

2015-01-01

The primary caregiver faces a set of problems derived from the responsibility to provide care to his patient; this leads to the creation of complex psychological responses that act as a mechanism known as cognitive and behavioral coping. The objective was to determine if there was a correlation between the level of anxiety and the coping strategies used by primary caregivers of bedridden patients. Transversal, descriptive and correlational study. Beck Anxiety Inventory and the Coping Strategies Inventory were used. We used Spearman's rank correlation coefficient, a significance level of 0.05 and the statistical program SPSS, version 15. We included 60 primary caregivers. The most common score for anxiety was moderate (28 %). The most frequently used strategy was problem solving (average = 14.7). By relating the level of anxiety and coping strategies a significant correlation was obtained with problem solving: r = 0.260; self-criticism, r = 0.425; wishful thinking, r = 0.412; and social withdrawal, r = 0.453. The anxiety has an impact on the way caregivers cope; most of the population who have moderate to severe anxiety use desadaptive strategies focused on emotion.

Gender Differences in Caregiving at End of Life: Implications for Hospice Teams.

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Washington, Karla T; Pike, Kenneth C; Demiris, George; Parker Oliver, Debra; Albright, David L; Lewis, Alexandria M

2015-12-01

Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.

[Coping and subjective burden in primary caregivers of dependent elderly relatives in Andalusia, Spain].

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Pérez-Cruz, Margarita; Muñoz-Martínez, M Ángeles; Parra-Anguita, Laura; Del-Pino-Casado, Rafael

To analyse the relationship between the type of coping and subjective burden in caregivers of dependent elderly relatives in Andalusia (Spain). Cross-sectional study. Primary Health Care (autonomous community of Andalusia, Spain). A convenience sample of 198 primary caregivers of dependent elderly relatives. Coping (Brief COPE), subjective burden (caregiver stress index), objective burden (functional capacity [Barthel Index], cognitive impairment [Pfeiffer Test], behavioural problems of the care recipient [Neuropsychiatric Inventory], and caregivers' dedication to caring), gender and kinship. Most caregivers were women (89.4%), daughters of the care recipient (57.1%), and shared home with him/her (69.7%). On controlling for objective burden, gender and kinship, it was found that subjective burden was positively associated with dysfunctional coping (β=0.28; P<.001) and negatively with emotion-focused coping (β=-0.25; P=.001), while no association was found with problem-focused coping. Dysfunctional coping may be a risk factor for subjective burden, and emotion-focused coping may be a protective factor for that subjective burden regardless of the objective burden, and gender and kinship of the caregivers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Anxiety and depressive symptoms in primary caregivers of patients with severe depression. A snapshot from a military mental health care facility

International Nuclear Information System (INIS)

Javed, M.; Ayaz, S.B.; Ullah, A.; Matee, S.

2015-01-01

This study aimed at determining the frequency and severity of anxiety and depressive symptoms in primary caregivers of severely depressed patients and evaluate the impact of demographic factors. Methodology: It was a cross-sectional study conducted in the out-patient as well as the in-patient setting of Armed Forces institute of Mental Health, Rawalpindi, from September 2009 to May 2012. Through non-probability purposive sampling, primary caregivers of patients diagnosed with severe depression by consultant psychiatrists were included and scored by resident psychiatrists on Revised Beck Depression Inventory (BDI-II) and Beck Anxiety Inventory (BAI). Results: Of 316 caregivers (mean age: 37.75 ± 12.26 years), majority (52.8%) were females, married (70.6%), employed (58.5%), earned < Rs. 5,000 per month (40.5%) and literate from grade 1-5 (21.8%). Most of them were mothers (25.3%) of the patients and were the caregivers for less than one year (43.4%). The mean total BDI-II score was 17.29 ± 13.94.It was significantly high in subjects belonging to age group of < 44 years. The mean total BAI score was 14.44 ± 11.56 and it was not significantly related to any demographic factor. Conclusion: Caregivers of severely depressed patients suffered considerable levels of anxiety and depressive symptoms. Younger caregivers were at higher risk of developing depressive symptoms but the age did not significantly affect development of anxiety. Gender, marital status, employment status, monthly income, relationship with the patient, ethnicity based on provinces, educational level and duration of care giving did not appear to be significantly related to the development of anxiety or depressive symptoms in our sample. (author)

Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer

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2013-01-01

Background This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges. Methods Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’ Results The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure. Conclusions This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers. PMID:24341372

[The resilience and health status of primary caregivers of schizophrenia patients].

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Fan, Ya-Chi; Chen, Mei-Bih; Lin, Kuan-Chia; Bai, Ya-Mei; Wei, Shiow-Jing

2014-12-01

Resilience has been shown to have a positive effect on health status. However, little research has been conducted on the impact of resilience on the health of primary caregivers of schizophrenia patients. This study investigated the correlations between resilience and the health status of caregivers of schizophrenia patients. A cross-sectional, descriptive research design was used. Data collection was conducted using a set of questionnaires that included a demographic datasheet, the SOC-13 (Sense of Coherence), the DASS-21 (Depression Anxiety Stress Scales), and the SF-36 (short form). Seventy caregivers of schizophrenia patients were enrolled as participants at the psychiatric inpatient department of a medical center. SPSS 17.0 and SAS.9.2 statistical software packages were used to conduct descriptive analysis, the Sobel test, and Tobit model analysis. (1) The mean QOL (quality of life) scale score was 67.46 (SD = 17.74). Nearly one-fifth (18.6%) of caregivers were classified in the low to high depression range; 17.1% were classified in the low to high anxiety level; and 10% were classified in low to high stress level. (2) Duration of the caring period correlated negatively with caregiver QOL; having a concomitant disease significantly impacted QOL and resilience; and number of patient hospitalization days correlated negatively with level of caregiver anxiety. (3) The numbers of incidents of patient violence and patient suicide attempts correlated negatively with caregiver resilience and QOL. (4) Resilience was a mediator between care-giver demographic data and QOL. (5) Caregiver resilience was a predictor of QOL, depression, anxiety, and stress. The findings of the present study increase our understanding of the impact of resilience on the health status of caregivers of schizophrenia patients. The authors hope these finding may be referenced in the development of resilience-based nursing caring models in the future.

Gender Differences in Dementia Spousal Caregiving

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Minna Maria Pöysti

2012-01-01

Full Text Available The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE, clinical dementia rating scale (CDR, neuropsychiatric inventory (NPI, cornell depression scale and charlson comorbidity index (CCI were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P<0.001, and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P=0.048; MMSE14.0 versus 17.7, P<0.001. However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P<0.001. Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.

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

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

2014-02-01

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

Co-creating healthful eating behaviors with very young children: The impact of information overload on primary caregivers.

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Norton, Julie L; Raciti, Maria M

2017-01-01

Primary caregivers of very young children are subject to excessive and often disparate information regarding the instilling of healthful eating behaviors. Our study focuses on the integration of the operant resources of primary caregivers (i.e., their knowledge and modeling skills) and that of their very young children (i.e., their self-regulation of energy intake and food preferences) to co-create healthful eating behaviors as a measure to curb overweight and obesity in adulthood. Our two-stage qualitative study makes original contributions demonstrating that primary caregivers' efforts to co-create healthful eating behaviors with their very young children are adversely affected by information overload.

Pediatric caregiver attitudes toward email communication: survey in an urban primary care setting.

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Dudas, Robert Arthur; Crocetti, Michael

2013-10-23

Overall usage of email communication between patients and physicians continues to increase, due in part to expanding the adoption of electronic health records and patient portals. Unequal access and acceptance of these technologies has the potential to exacerbate disparities in care. Little is known about the attitudes of pediatric caregivers with regard to their acceptance of email as a means to communicate with their health care providers. We conducted a survey to assess pediatric caregiver access to and attitudes toward the use of electronic communication modalities to communicate with health care providers in an urban pediatric primary care clinic. Participants were pediatric caregivers recruited from an urban pediatric primary care clinic in Baltimore, Maryland, who completed a 35-item questionnaire in this cross-sectional study. Of the 229 caregivers who completed the survey (91.2% response rate), 171 (74.6%) reported that they use email to communicate with others. Of the email users, 145 respondents (86.3%) stated that they would like to email doctors, although only 18 (10.7%) actually do so. Among email users, African-American caregivers were much less likely to support the expanded use of email communication with health care providers (adjusted OR 0.34, 95% CI 0.14-0.82) as were those with annual incomes less than US $30,000 (adjusted OR 0.26, 95% CI 0.09-0.74). Caregivers of children have access to email and many would be interested in communicating with health care providers. However, African-Americans and those in lower socioeconomic groups were much less likely to have positive attitudes toward email.

Double Bind: Primary Caregivers of Children with Special Health Care Needs and Their Access to Leave Benefits

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Chung, Paul J.; Garfield, Craig F.; Elliott, Marc N.; Vestal, Katherine D.; Klein, David J.; Schuster, Mark A.

2013-01-01

Objective Family leave benefits are a critical tool allowing parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). Methods We conducted telephone interviews with three successive cohorts of employed parents of CSHCN, randomly sampled from a California children’s hospital. At Wave 1 (November 2003 to January 2004) we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006) we conducted 396 parent interviews. At Wave 3 (November 2007 to December 2008) we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses, using wave indicators and sample weights. Results Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs. 82%, Ppaid leave outside of sick leave/vacation (41% vs. 51%, Pleave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child’s illness and to report being unable to miss work when they needed to. Conclusions Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve health for CSHCN and their families. PMID:23477748

Parenting characteristics of female caregivers of children affected by chronic endocrine conditions: a comparison between disorders of sex development and type 1 diabetes mellitus.

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Kirk, Katherine D; Fedele, David A; Wolfe-Christensen, Cortney; Phillips, Timothy M; Mazur, Tom; Mullins, Larry L; Chernausek, Steven D; Wisniewski, Amy B

2011-12-01

Rearing a child with a chronic illness is stressful and can potentially affect parenting style, which may result in poorer outcomes for children. The purpose of this study was to compare parenting characteristics of female caregivers rearing children with a disorder of sex development (DSD) to female caregivers rearing children with type 1 diabetes mellitus (T1DM). Caregivers of both groups were matched according to age and compared on measures of stress and parenting practices. Both groups demonstrated significant levels of stress and negative parenting practices. Children with T1DM and male children with non-life-threatening DSD were perceived as more vulnerable by their caregivers. Better understanding of parenting experiences of female caregivers rearing children with DSD, particularly male children, will facilitate the development of individualized interventions to ameliorate negative parenting practices and stress, with the long-term goal of improved health outcomes for their children. Copyright © 2011 Elsevier Inc. All rights reserved.

Evaluation of the Quality of Life of Female Family Caregivers of Patients with Breast Cancer in Iran (2013

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Masoumeh Hashemian

2017-01-01

Full Text Available Background & aim: Family caregivers of cancer patients are at a high risk of physical, psychological and emotional problems, which could adversely affect their quality of life. This study aimed to evaluate the quality of life of the female caregivers of breast cancer patients in Sabzevar, Iran. Methods: This cross-sectional study was conducted on 105 participants in Sabzevar, Iran in 2013. Subjects were selected via purposive sampling, and required data were collected using the Caregiver Quality of Life Index-Cancer (CQOLC scale, which was completed by the family caregivers of breast cancer patients through interviews. Data analysis was performed in SPSS version 20 using independent t-test, analysis of variance, Pearson’s correlation-coefficient, and stepwise multiple regression analysis. Results: Mean age of the participants was 36.9±10.9 years, and total mean score of quality of life was 55.48±10.87. The highest score was observed in the subscale of “lifestyle disruption” (mean: 66.14±17.31, while the lowest score belonged to the subscale of “emotional/mental burden” (mean: 49.43±18.49. Total mean score of quality of life in the sisters of breast cancer patients was 4.678 units higher compared to the caregivers who were the daughter of the patients. Moreover, total mean score of quality of life in breast cancer patients with no insurance was 5.457 scores lower compared to those with insurance. Conclusion: According to the results of this study, emotional and psychological needs of the female caregivers of patients with breast cancer (as informal caregivers must be considered in developing related educational programs for the formal caregivers of these patients, especially mental health nurses.

Access to leave benefits for primary caregivers of children with special health care needs: a double bind.

Science.gov (United States)

Chung, Paul J; Garfield, Craig F; Elliott, Marc N; Vestal, Katherine D; Klein, David J; Schuster, Mark A

2013-01-01

Family leave benefits are a key tool that allow parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). We conducted telephone interviews with 3 successive cohorts of employed parents of CSHCN, randomly sampled from a California children's hospital. At Wave 1 (November 2003 to January 2004), we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006), we conducted 396 parent interviews. At Wave 3 (November 2007 to January 2008), we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses by using wave indicators and sample weights. Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs 82%, P paid leave outside of sick leave/vacation (41% vs 51%, P Leave Act benefits (28% vs 44%, P leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child's illness and to report being unable to miss work when they needed to. Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve the circumstances of CSHCN and their families. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Child-rearing practices of primary caregivers of HIV-infected children: An integrative review of the literature.

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Klunklin, Pimpaporn; Harrigan, Rosanne C

2002-08-01

The number of human immunodeficiency virus (HIV)-infected children has increased because of the HIV and acquired immunodeficiency syndrome epidemic. Yet little is known about the child-rearing practices of these children's primary caregivers. The purpose of this article is to describe what is known about the child-rearing practices of primary caregivers of HIV-infected children. The review covers a 10-year period from 1990 to 2000. Three electronic bibliographic databases (MEDLINE, CINAHL, and AIDSLINE) were explored. Key words used were HIV-positive children, caregivers, and child-rearing. A total of 50 papers were examined. Using the Matrix Method, each paper was evaluated according to five frames of reference: journal, purpose, sample, method, and findings. Content analysis was used to identity salient themes. Themes that emerged were: caregiver, child, and interactions or child-rearing practices. These findings affirm the parent-child interaction model generated by Kathryn E. Barnard and support this framework as a tool for investigating the relationships between these children and their caregivers. Copyright 2002, Elsevier Science (USA). All rights reserved.

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

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Phoebe V. Kahn

2016-01-01

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

[Family caregiver issues: gender, privacy, and public policy perspectives].

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Lee, I; Chou, Fan-Hao; Chen, Chung-Hey

2011-04-01

Due to the phenomenon of Taiwan'saging population has made, long-term care has become an issue of increasingly emphasized importance. According to the statistics, the family takes responsibility for most long-term care duties and more than 70% of primary family caregivers are female. In the past, because of gender-based divisions of labor and gender role expectations made, it was taken for granted that females would be the socially preferred family caregivers. Those men who devoting in themselves to such work were regarded as a rare precious. As such, family care signified entailed different life experiences for males and females. Over the years, amendments to the civil code have recognized family care contributions, and the allowance for caregivers underlines that care responsibilities have shifted away from the family to society. Traditional gender divisions of labor today are significantly more blurred; family structures have become smaller in size; female labor in the workplace has increased; and ten-year long-term care plans and long-term care insurance have been successively implemented. These transformations will make labor outsourcing more and more popular and transform family care from a private problem to a pubic policy issue. In the future, family caregivers require consideration and support on a sustained basis. It is also important to improve and monitor the quality of care services. Nurses, the major professional members of long-term care teams, should be concerned over the issue of family care while providing nursing care. They should include family caregivers in the care plan so that they can make sure that patients receive comprehensive and constant care in order to enhance the overall quality of nursing care.

Burden and depression in primary caregivers of persons with visual impairment

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Shubhank Khare

2016-01-01

Full Text Available 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

Emotional hyperreactivity in response to childhood abuse by primary caregivers in patients with borderline personality disorder.

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Lobbestael, Jill; Arntz, Arnoud

2015-09-01

One of the core postulated features of borderline personality disorder (BPD) is extreme emotional reactivity to a wide array of evocative stimuli. Findings from previous experimental research however are mixed, and some theories suggest specificity of hyper emotional responses, as being related to abuse, rejection and abandonment only. The current experiment examines the specificity of emotional hyperreactivity in BPD. The impact of four film clips (BPD-specific: childhood abuse by primary caregivers; BPD-nonspecific: peer bullying; positive; and neutral) on self-reported emotional affect was assessed in three female groups; BPD-patients (n = 24), cluster C personality disorder patients (n = 17) and non-patient controls (n = 23). Results showed that compared to the neutral film clip, BPD-patients reacted with more overall negative affect following the childhood abuse clip, and with more anger following the peer bullying clip than the two other groups. The current study was restricted to assessment of the impact of evocative stimuli on self-reported emotions, and the order in which the film clips were presented to the participants was fixed. Results suggest that BPD-patients only react generally excessively emotional to stimuli related to childhood abuse by primary caregivers, and with excessive anger to peer-bullying stimuli. These findings are thus not in line with the core idea of general emotional hyperreactvity in BPD. Copyright © 2015 Elsevier Ltd. All rights reserved.

Breadwinning Moms, Caregiving Dads: Double Standard in Social Judgments of Gender Norm Violators

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Gaunt, Ruth

2013-01-01

This study explores the role of gender ideologies in moderating social judgments of gender norm violators. Three hundred and eleven participants evaluated a male or a female target who was either a primary breadwinner or a primary caregiver. Attributions of personal traits, moral emotions, and marital emotions were examined. Results showed that…

Cultural significance of primary teeth for caregivers in Northeast Brazil

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Nations,Marilyn K; Calvasina,Paola Gondim; Martin,Michele N; Dias,Hilma Fontenele

2008-01-01

This anthropological study critically evaluates Brazilian caregivers' symbolic production and significance of their malnourished offspring's primary teeth, as well as their own, and describes popular dental practices. From January to June 2004, ethnographic interviews of 27 poor, low-literacy mothers were conducted at a public Malnutrition Treatment Center in Fortaleza, Ceará State. Participant observation of clinical pathways and home environments supplemented the data. Content analysis was ...

Determinants of depression in primary caregivers of disabled older relatives: a path analysis

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Rafael del -Pino-Casado

2017-11-01

Full Text Available Abstract Background Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives. Methods Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200 was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression. Results Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure and an internal obligation (beliefs of obligation; (b our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

The effect of the support program on the resilience of female family caregivers of stroke patients: Randomized controlled trial.

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İnci, Fadime Hatice; Temel, Ayla Bayik

2016-11-01

The purpose of the study was to determine the effect of a support program on the resilience of female family caregivers of stroke patients. This is a randomized controlled trial. The sample consisted 70 female family caregivers (34 experimental, 36 control group). Data were collected three times (pretest-posttest, follow-up test). Data were collected using the demographical data form, the Family Index of Regenerativity and Adaptation-General. A significant difference was determined between the experimental and control group's follow-up test scores for relative and friend support, social support and family-coping coherence. A significant difference was determined between the experimental group's mean pretest, posttest and follow-up test scores in terms of family strain, relative and friend support, social support, family coping-coherence, family hardiness and family distress. These results suggest that the Support Program contributes to the improvement of the components of resilience of family caregivers of stroke patients. Copyright © 2016 Elsevier Inc. All rights reserved.

Self-characterizations of adult female informal caregivers: gender identity and the bearing of burden.

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Kramer, Maeona K

2005-01-01

Gender identity is a powerful aspect of self that shapes values, attitudes, and conduct. Family caregivers, particularly women, tend to forgo institutionalization of care recipients even when care demands are overwhelming. The reluctance of women to relinquish care raises questions about the relationship between gender identity and the bearing of burden. To illuminate the relationship between gender and burden, 36 adult women caring for highly dependent adults were asked to describe the nature of "self"; that is, how they characterized themselves as a person. Results were tabulated and critically examined in relation to stereotypical gender traits, as well as social and political processes that create gender dichotomies. Overall, self-characterizations indicated caregivers had internalized stereotypical female gender traits that support and facilitate the enduring of burden.

The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review.

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Lynch, J; Cahalan, R

2017-11-01

Literature review. To provide a detailed review of the literature regarding the impact of spinal cord injury (SCI) on the quality of life (QOL) of family members who have become the primary caregiver and to highlight potential interventions available. Appropriate databases were searched for relevant peer-reviewed studies. Twenty-five studies (four qualitative and 21 quantitative) were identified which investigated the role that family members play in caring for people with SCI and the impact it has on their QOL. Depression, anxiety, physical symptoms and reduced satisfaction with life in primary family caregivers of patients with SCI were commonly reported across the literature. Isolation, loss of identity and role changes were also regularly reported as negative outcomes of caregiving for someone with an SCI. A range of interventions (including family training, problem-solving training and support groups) have been shown to have benefits for family caregivers' QOL. SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on increasing patient/family education and access to support groups, is recommended.

Typologies of Caregiving Families: Family Congruence and Individual Well-Being.

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Pruchno, Rachel A.; And Others

1997-01-01

Used data from 252 female primary caregivers, their husbands, and children to create family typologies based on the extent of similarities among reports of elder behaviors. Results indicate that families characterized by high agreement and those characterized by low agreement significantly differed from one another. Other findings are reported.…

What cancer means to the patients and their primary caregivers in the family-accounted Korean context: A dyadic interpretation.

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Jeong, Ansuk; An, Ji Yeong; Park, Jong Hyock; Park, Keeho

2017-11-01

When cancer hits a family, the entire family members start to adapt to the new status. This study aimed to investigate the main issue of the family with cancer patient and their way of solving it. In-depth interviews were conducted as a qualitative research. Thirty-three participants described their experience either as cancer patients or as family caregivers. Guided by the grounded theory, we identified the main concern of the families being primary caregiver selection. The primary caregiver was determined by the conditions of the patient and the family, but the primary caregiver accepted his/her role believing no alternative was plausible in the family. The processes of the entire family have change since cancer showed their "adapting living," which was identified as the core variable. On the basis of the current study's limitations, suggestions were made for future studies in which cultural attributes are distinguished from the medical system attributes. Copyright © 2016 John Wiley & Sons, Ltd.

Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

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Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

2017-12-01

To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases

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Hui-Yu Fan

2016-12-01

Full Text Available Rare diseases by definition do not occur often and it is difficult to provide palliative care for those affected due to the lack of information and treatment for those rare diseases. The families of those with rare diseases bear a heavy burden and have a harder time than even the families of disabled people. This research’s goal is to provide the families of those with rare diseases with information on how to provide care for their family members. The study uses the qualitative research method of semi-structured interview. We interviewed 10 rare disease children and adolescents’ primary caregivers. The results of the study indicated that if no one suffers from the rare diseases in their family, primary caregivers are not aware of the rare disease information. After their initial diagnosis, the caregivers will want to know how to best care for their family member, from how best to provide supportive care to providing physical therapy, in order to improve their quality of life and prognosis. When they discover their child’s disease is incurable, primary caregivers need information about social welfare and their child’s future. The main source of medical care information is provided by hospitals and patient-support organizations. Regarding information behavior, primary caregivers employ the information which they obtain and they either check the information they obtain with a professional authority, multiple sources, or compare it with patient experience to validate if the information is accurate or not. Finally, primary caregivers are glad to share what they find with other families that have children with a rare disease. They may use different ways of sharing information such as the Internet or face to face. [Article content in Chinese

Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support.

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Wang, Kai-Wei K; Lin, Hung-Ching; Lee, Chin-Ting; Lee, Kuo-Sheng

2016-07-01

To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support. Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation. The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index. The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used. A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need. To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. © 2016 John Wiley & Sons Ltd.

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

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Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

2008-04-15

This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.

The experience of being a grandmother who is the primary caregiver for her HIV-positive grandchild.

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Caliandro, G; Hughes, C

1998-01-01

The number of grandparents assuming care for their grandchildren is increasing, and this affects grandparents both positively and negatively. The current study builds on an earlier study of the effects of social support, stress, and level of illness on caregiving of children with acquired immune deficiency syndrome (AIDS) that identified both positive and negative effects of caregiving. To identify the lived experience of African American and Latino grandmothers as the primary caregivers for their grandchildren who are human immunodeficiency virus (HIV)-infected or have AIDS and to identify the similarities and differences between the two groups. Using Van Manen's method for hermeneutical phenomenological research, the lived experiences of 10 African American and Latino grandmothers who were the primary caregivers for their HIV-positive grandchildren were investigated. Additionally, the similarities and differences between the two groups were studied. Four themes identified were (a) upholding the primacy of the family, (b) living in the child-centered present, (c) being strong as mature women, and (d) living within a constricting environment. Twelve subthemes expanded and clarified the meaning of these themes. Although there were differences related to family structure and cultural backgrounds, the grandmothers were more alike than different.

Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers.

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Eriksson, Henrik; Sandberg, Jonas; Hellström, Ingrid

2013-05-01

In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia. One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective. Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective. The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed. Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns. Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers. © 2012 Blackwell

[Validation of the abbreviated Zarit scales for measuring burden syndrome in the primary caregiver of an elderly patient].

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Vélez Lopera, Johana María; Berbesí Fernández, Dedsy; Cardona Arango, Doris; Segura Cardona, Angela; Ordóñez Molina, Jaime

2012-07-01

To determine which abbreviated Zarit Scale (ZS) better evaluates the burden of the caregiver of an elderly patient in Medellin, Colombia. Validation study. Primary Care setting in the city of Medellin. Primary caregiver of dependent elderly patients over 65 years old. Sensitivity, specificity, positive predictive value, and negative predictive value for the different abbreviated Zarit scales, plus performing a reliability analysis using the Cronbach Alpha coefficient. The abbreviated scales obtained a sensitivity of between 36.84 and 81.58%, specificity between 95.99 and 100%, positive predictive values between 71.05 and 100%, and negative predictive values of between 91.64 and 97.42%. The scale that better determined caregiver burden in Primary Care was the Bedard Screening scale, with a sensitivity of 81.58%, a specificity of 96.35% and positive and negative predictive values of 75.61% and 97.42%, respectively. Copyright © 2010 Elsevier España, S.L. All rights reserved.

The responsibility continuum: never primary, coresident and caregiver--heterogeneity in the African-American grandmother experience.

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Lee, Rosalyn D; Ensminger, Margaret E; LaVeist, Thomas A

2005-01-01

This article examines diversity among 542 African-American grandmothers from the Woodlawn Longitudinal Study. Women were categorized on the basis of their household composition, degree of care provided to grandchildren, and status of primary caregiver to grandchildren during lifetime. Overall, 67.7% of the sample engaged in parenting and exchange behaviors at high or moderate levels. Twenty-seven percent of the sample coresided with and provided care to grandchildren, 28% did not coreside but had been primary caregivers in the past, and 45% did not coreside and had never been primarily responsible for a grandchild. Heterogeneity was found among seven grandmother types on economic measures, life events, and grandchild characteristics. Grandmothers with earlier primary responsibility and those currently in homes of three or more generations were associated with poor outcomes. Policy and practice can be informed by additional research on status, context, and timing of assumption of responsibilities for grandchildren.

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

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Paulson, Daniel; Lichtenberg, Peter A.

2011-01-01

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

The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities.

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Huus, K; Dada, S; Bornman, J; Lygnegård, F

2016-11-01

Besides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive - particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities. A descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas. The majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas. Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them. © 2016 John Wiley & Sons Ltd.

Emotional and social perception of main caregiver in a rural health district

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Fabiola Yonte Huete

2012-03-01

Full Text Available Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. Results: The age of dependent patient immobilized is rising particulary in women, with mental deterioration and dementia as principal diseases. The most of main caregivers are women, married women and daughters of dependent patient immobilized patients, with primary studies, in the middle age. They work almost the complete day in patient care, having less than two hour for themselves. The lack of money is the principal need felt it. The most of caregivers suffer mild to moderate stress and higher anxiety levels than general population, especially in females. Caregiver perceived quality of life is lower than general population too. Conclusions: To know the profile of dependent patient immobilized patient´s caregiver and the factors perceived burden caregiver´s, it is important developing interventions and plans to improve their quality of life related to health in order to reduce the syndrome of main caregiver.

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography.

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Pindus, Dominika M; Mullis, Ricky; Lim, Lisa; Wellwood, Ian; Rundell, A Viona; Abd Aziz, Noor Azah; Mant, Jonathan

2018-01-01

To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services. Systematic review and meta-ethnography. Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015). Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services. A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria. 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke. Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems. Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not

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

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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…

Avaliação do estresse psicológico do cuidador primário do paciente com artrite idiopática juvenil Evaluation of psychological stress in primary caregivers of patients with juvenile idiopathic arthritis

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Vivian Iwamoto

2008-02-01

Full Text Available OBJETIVO: Avaliar o estresse psicológico do cuidador do paciente pediátrico com artrite idiopática juvenil (AIJ. MÉTODOS: Estudo observacional analítico transversal não controlado de 40 cuidadores de pacientes com AIJ, que foram avaliados pelo questionário Caregiver Burden Scale. Esta escala analisa cinco domínios do estresse: tensão geral, isolamento, decepção, envolvimento emocional e estresse causado por barreiras impostas pelo meio ambiente, graduando-os de 1 a 4. Os dados obtidos foram submetidos a análise estatística. RESULTADOS: Os cuidadores de pacientes com AIJ são principalmente do sexo feminino (87,5%, casados (92,1% e com parentesco direto com o paciente (90%. O grau de estresse é maior nos cuidadores de pacientes com AIJ forma poliarticular (p = 0,006, nos solteiros (p = 0,019 e naqueles do sexo feminino (p = 0,017. A dimensão analisada na qual se observou maior nível de estresse foi a de dificuldades relacionadas com o meio ambiente. CONCLUSÃO: Mulheres casadas e com parentesco direto com o paciente são os maiores cuidadores do paciente de AIJ. Cuidado com pacientes de forma poliarticular causa mais estresse do que o de pacientes de forma oligoarticular. Barreiras impostas pelo meio ambiente são responsáveis pelo maior índice de estresse nestes cuidadores.OBJECTIVE: To assess psychological stress in primary caregivers of juvenile idiopathic arthritis (JIA pediatric patients. METHODS: Uncontrolled cross-sectional analytical study of 40 caregivers of JIA patients. Caregivers were evaluated using the Caregiver Burden Scale, which analyzes five domains of stress on a scale of 1 to 4: general strain, isolation, disappointment, emotional involvement and strain caused by environmental barriers. The data were subjected to statistical analysis. RESULTS: Caregivers of JIA patients were mainly female (87.5%, married (92.1% and close relatives (90%. Stress levels were higher in caregivers of polyarticular JIA patients (p

An analysis of caregiver profile and its impact on employment situation: primary caregivers of patients of Alzheimer´s and other dementias in the South Western of Spain

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Manuel, Ruiz-Adame Reina

2015-12-01

Full Text Available The aim of this paper is to analyse the main demographic and socio-economic conditions of the primary caregivers of Alzheimer's and dementia sufferers, and their relationship to the employment situation of the caregiver. Material and Methods: Empirical analysis of the data obtained from surveys of 694 primary caregivers of Alzheimer's and dementia sufferers through the Andalusian Associations of Relatives of Alzheimer’s Patients. The sampling procedure was selective non-probabilistic sampling. The SPSS 19 statistical software package was used to process the data. The verification of the hypothesis of independence of variables was performed using the chi square test under the usual parameters. Results: The employment rate of working-age caregivers is much lower than that of the general population, especially in older women with low levels of education who live with the patient. The data revealed that caregiving which takes place in the home represents the main restriction preventing access to the labour market, i.e. living with the patient is an additional handicap, and an even greater one for women. Conclusions: Those who care for dementia patients have greater limitations in accessing the labour market than the rest of the population, and this limitation is significantly greater when care is provided in the home. As such, health and social policy, with a view towards encouraging employment, needs to take into account the option of boosting available resources outside of family care.

Caregiver burden among relatives of patients with schizophrenia in Katsina, Nigeria

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Abdulkareem Jika Yusuf

2009-06-01

Full Text Available Objective: Caring for patients’ with schizophrenia leads to an enormous burden on the caregivers. However, the magnitude of this problem remains largely unknown in Sub-Saharan Africa. The objective of this study was to determine the burden of care giving among relatives of patients with schizophrenia. Materials and method: A total of 129 primary care-givers of patients with schizophrenia attending out-patient clinic of Katsina state Psychiatric Hospital were interviewed using a socio-demographic data collection sheet and Zarith Burden Interview (ZBI. Data obtained was analysed using Statistical Package for Social Sciences version 13. Results: The mean age of the respondents was 45.07±8.91. Majority of the caregivers are females. High level of burden was found in 47.3% of the respondents. The level of burden experienced was significantly associated with place of residence and family size. Conclusion: Schizophrenia is associated with high level of caregiver burden and effort should be made at alleviating this burden for better out come in both the patients and caregivers.

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

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Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

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

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Penning, Margaret J; Wu, Zheng

2016-12-01

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

Physical disability contributes to caregiver stress in dementia caregivers.

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Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

2005-03-01

Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers

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Yi Eng J

2011-06-01

Full Text Available Abstract Background Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. Methods A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS assessed the stress level due to life events. Results The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36, 61.32 (15.52, 62.77 (17.33, 64.02 (14.86 consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. Conclusion Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL.

Resilience Modulators and Overburden in Major Caregivers of Advanced Cancer Patients

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Anay González Guerra

2017-03-01

Full Text Available Foundation: the caregiver plays an important role in helping and supporting a patient with cancer, but at the same time has the emotional and work burden which this work presupposes. Objective: to determine the resilience modulating factors and the degree of burden in major caregivers of advanced cancer patients. Method: a descriptive study was developed at the Area III Policlinic Cienfuegos during the period from December 2012 to March 2013. The universe was constituted by 25 primary caregivers of patients in an advanced stage of the disease. The studied variables were: sex, age, scholarship, occupation, marital status, kinship, time to patient care, self-esteem, optimism, emotional intelligence, and burden. The techniques used were: questionnaire and test of emotional intelligence, Coopersmith self-esteem inventory, caregiver burden scale by Zarit. Results: ages between 51 and 72 years predominated 48 %, 88 % were female, 40 % had elementary school level and 48 % were married, 72 % were housewives, 44 % were patients spouses, 52 % less than a year of care giving. 60 % had an intense burden, 48 % low level of self-esteem and an intense burden. 58.3 % of caregivers with low emotional intelligence had an intense burden. Conclusion: resilience modulators, self-esteem and emotional intelligence determine the level of burden suffered by major caregivers of advanced cancer patients.

Maternal Models of Risk: Links between Substance Use and Risky Sexual Behavior in African American Female Caregivers and Daughters

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Brakefield, Tiffany; Wilson, Helen; Donenberg, Geri

2012-01-01

African American (AA) adolescent girls are at heightened risk for HIV and sexually transmitted infections (STIs), and thus knowledge of factors related to risky sexual behavior in this population is crucial. Using Social Learning Theory (Bandura, 1977), this paper examines pathways from female caregivers' risky sexual behavior and substance use to…

Explanatory models and distress in primary caregivers of patients with acute psychotic presentations: A study from South India.

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Joy, Deepa S; Manoranjitham, S D; Samuel, P; Jacob, K S

2017-11-01

Emotional distress among caregivers of people with mental illness is common, changes overtime and requires appropriate coping strategies to prevent long-term disability. Explanatory models, which underpin understanding of disease and illness, are crucial to coping. To study the association of explanatory models and distress among caregivers of people with acute psychotic illness. A total of 60 consecutive patients and their primary caregivers who presented to the Department of Psychiatry, Christian Medical College, Vellore, were recruited for the study. Positive and Negative Syndrome Scale (PANSS), Short Explanatory Model Interview (SEMI) and the General Health Questionnaire-12 (GHQ-12) were used to assess severity of psychosis, explanatory models of illness and emotional distress. Standard bivariate and multivariable statistics were employed. Majority of the caregivers simultaneously held multiple models of illness, which included medical and non-medical perspectives. The GHQ-12 score were significantly lower in people who held multiple explanatory models of illness when compared to the caregivers who believed single explanations. Explanatory models affect coping in caregivers of patients with acute psychotic presentations. There is a need to have a broad-based approach to recovery and care.

Fighting the odds: strategies of female caregivers of disabled children in Zimbabwe

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van der Mark, E.J.; Verrest, H.

2014-01-01

Caregivers of disabled children face numerous challenges in meeting their child’s needs. Research on Zimbabwean caregivers of disabled children is limited. Yet the difficult socio-economic, political and institutional context is expected to complicate the caregiving task. This article examines the

Projecting the effects of long-term care policy on the labor market participation of primary informal family caregivers of elderly with disability: insights from a dynamic simulation model.

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Ansah, John P; Matchar, David B; Malhotra, Rahul; Love, Sean R; Liu, Chang; Do, Young

2016-03-23

Using Singapore as a case study, this paper aims to understand the effects of the current long-term care policy and various alternative policy options on the labor market participation of primary informal family caregivers of elderly with disability. A model of the long-term care system in Singapore was developed using System Dynamics methodology. Under the current long-term care policy, by 2030, 6.9 percent of primary informal family caregivers (0.34 percent of the domestic labor supply) are expected to withdraw from the labor market. Alternative policy options reduce primary informal family caregiver labor market withdrawal; however, the number of workers required to scale up long-term care services is greater than the number of caregivers who can be expected to return to the labor market. Policymakers may face a dilemma between admitting more foreign workers to provide long-term care services and depending on primary informal family caregivers.

Service Users' and Caregivers' Perspectives on Continuity of Care in Out-of-Hours Primary Care.

LENUS (Irish Health Repository)

Gallagher, Niamh

2012-12-20

Modernization policies in primary care, such as the introduction of out-of-hours general practice cooperatives, signify a marked departure from many service users\\' traditional experiences of continuity of care. We report on a case study of accounts of service users with chronic conditions and their caregivers of continuity of care in an out-of-hours general practice cooperative in Ireland. Using Strauss and colleagues\\' Chronic Illness Trajectory Framework, we explored users\\' and caregivers\\' experiences of continuity in this context. Whereas those dealing with "routine trajectories" were largely satisfied with their experiences, those dealing with "problematic trajectories" (characterized by the presence of, for example, multimorbidity and complex care regimes) had considerable concerns about continuity of experiences in this service. Results highlight that modernization policies that have given rise to out-of-hours cooperatives have had a differential impact on service users with chronic conditions and their caregivers, with serious consequences for those who have "problematic" trajectories.

Prevalence and correlates of psychiatric morbidity among caregivers ...

African Journals Online (AJOL)

The caregivers were administered a sociodemographic questionnaire, GHQ-12, Zarit Burden interview, and the Columbia Impairment Scale. Results: Most caregivers observed in this study were females (80.5%) with mothers of the patients accounting for 78% of all the caregivers. A higher percentage of the patients were ...

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

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

2017-09-01

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

Conditioned to eat while watching television? Low-income caregivers' perspectives on the role of snacking and television viewing among pre-schoolers.

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Blaine, Rachel E; Fisher, Jennifer Orlet; Blake, Christine E; Orloski, Alexandria; Younginer, Nicholas; Bruton, Yasmeen; Ganter, Claudia; Rimm, Eric B; Geller, Alan C; Davison, Kirsten K

2016-06-01

Although television (TV) viewing is frequently paired with snacking among young children, little is known about the environment in which caregivers promote this behaviour. We describe low-income pre-schoolers' snacking and TV viewing habits as reported by their primary caregivers, including social/physical snacking contexts, types of snacks and caregiver rationales for offering snacks. These findings may support the development of effective messages to promote healthy child snacking. Semi-structured interviews assessed caregiver conceptualizations of pre-schoolers' snacks, purpose of snacks, snack context and snack frequency. Interviews occurred in Boston, Massachusetts and Philadelphia, Pennsylvania, USA. Forty-seven low-income multi-ethnic primary caregivers of children aged 3-5 years (92 % female, 32 % Hispanic/Latino, 34 % African American) described their child's snacking in the context of TV viewing. TV viewing and child snacking themes were described consistently across racial/ethnic groups. Caregivers described snacks offered during TV viewing as largely unhealthy. Labels for TV snacks indicated non-nutritive purposes, such as 'time out', 'enjoyment' or 'quiet.' Caregivers' primary reasons for providing snacks included child's expectations, behaviour management (e.g. to occupy child) and social time (e.g. family bonding). Some caregivers used TV to distract picky children to eat more food. Child snacking and TV viewing were contextually paired by providing child-sized furniture ('TV table') specifically for snacking. Low-income caregivers facilitate pre-schoolers' snacking and TV viewing, which are described as routine, positive and useful for non-nutritive purposes. Messages to caregivers should encourage 'snack-free' TV viewing, healthy snack options and guidance for managing children's behaviour without snacks or TV.

Multimedia material about velopharynx and primary palatoplasty for orientation of caregivers of children with cleft lip and palate.

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Costa, Tarcila Lima da; Souza, Olivia Mesquita Vieira de; Carneiro, Homero Aferri; Chiquito Netto, Cristianne; Pegoraro-Krook, Maria Inês; Dutka, Jeniffer de Cássia Rillo

2016-01-01

The objective of this study was to describe the process of elaboration and evaluation of multimedia material for caregivers about velopharynx, speech, and primary palatoplasty in babies with cleft lip and palate. The elaboration of the material involved an interdisciplinary relationship between the fields of Speech Language Pathology and Audiology, Dentistry and Arts. The definition and execution of the following activities were based on the principles of art education involving the following: characterization of audience, characterization of content, identification and elaboration of illustrations, characterization of educational approach, elaboration of text and narratives, definition of audiovisual sequence, and video preparation. The material was evaluated with the participation of 41 caregivers of patients with cleft lip and palate involving the comparison between acquired knowledge using an evaluation script applied before and after presenting the material. An increase was observed in correct responses regarding the role of velopharynx and the importance of primary palatoplasty for speech. The multimedia was effective in optimizing the knowledge of caregivers, suggesting the importance of such material during orientation.

Gender roles, marital intimacy, and nomination of spouse as primary caregiver.

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Allen, S M; Goldscheider, F; Ciambrone, D A

1999-04-01

Using data from a sample of married men and women undergoing treatment for cancer, we tested two potential hypotheses for the unequal representation of husbands and wives as spousal caregivers, including societal gender role norms and emotional closeness in the marital relationship. Multivariate analyses support both hypotheses; wives are only one third as likely as husbands to select their spouses as caregivers, and spouses who name their mates as confidants are three times more likely than those who do not to also name them as caregivers. We conclude that although gender role norms are key to caregiver selection, the intimacy inherent in the caregiving role renders an emotionally close marriage an important criterion to the selection of spouse as caregiver.

Female Leadership Dilemmas in Primary Schools: A Case Study of ...

African Journals Online (AJOL)

Female Leadership Dilemmas in Primary Schools: A Case Study of Primary Schools in Harare Province in Zimbabwe. ... Zimbabwe Journal of Educational Research ... The study sought to explore dilemmas faced by female school leaders in primary schools in Kambuzuma, Warren Park and Kuwadzana areas of Harare ...

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

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Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

Caregivers' Cortisol Levels and Perceived Stress in Home-Based and Center-Based Childcare

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Groeneveld, Marleen G.; Vermeer, Harriet J.; van IJzendoorn, Marinus H.; Linting, Marielle

2012-01-01

The current study examined professional caregivers' perceived and physiological stress, and associations with the quality of care they provide. Participants were 55 female caregivers from childcare homes and 46 female caregivers from childcare centers in the Netherlands. In both types of settings, equivalent measures and procedures were used. On…

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

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Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

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

African Journals Online (AJOL)

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

Validity and reliability of Turkish Caregiver Burden Scale among family caregivers of haemodialysis patients.

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Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. In Turkey, there is a need for a multi-dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. A methodological study. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward-backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach's alpha and item-total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36-Item Short Form Health Survey (SF-36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Cronbach's alpha and item-total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale's five-factor solution. The confirmatory factor analysis five-factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43-0·81. By means of divergent validity, all sub-dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF-36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used

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

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Wafa eTrad

2015-09-01

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

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

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

1998-04-01

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

Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

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Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

2015-01-01

The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

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

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Henriksson, Anette; Årestedt, Kristofer

2013-07-01

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

Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol

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Pérez-Arechaederra Diana

2010-09-01

Full Text Available Abstract Background Although Primary Health Care (PHC Teams are used to deal with prevention and treatment of sanitary problems in adults with chronic diseases, they usually have a lack of experience in development of psychotherapeutic interventions. However, these interventions are the ones that achieve better results to reduce symptomatology and improve emotional state of caregivers. The study aims to evaluate the effectiveness of an intervention of psychotherapy in improving the mental health and Quality of life of caregivers. This intervention is based on theoretical approaches to care adjusted to cognitive theory, in order to be applied in primary health care centres. Methods/Design This is multicentre clinical trials study, randomized in two parallel groups, carry out in two PHC, Study population: 150 caregivers will be included by consecutive sampling and they will be randomized the half to experimental group and the other half to control group. They provide mostly all the assistance to care-dependent familiars receiving attention in PHC Centers. Measurements: Each caregiver will be evaluated on a personal interview. The caregivers' assessment protocol: 1 Assessment of different socio-demographic related to care, and caregiver's personal situation. 2Care-dependent individuals will also be assessed by Barthel Index and Pfeiffer Questionnaire (SPMSQ. 3Change in caregivers will be the principal measure: family function (Family APGAR Questionnaire, burden short questionnaire (Short Zarit Burden Interview, quality of life (Ruiz & Baca: 1993 Questionnaire, the Duke-UNK Functional Social Support Questionnaire, the General Health Questionnaire-12, and changes in Dysfunctional Thoughts about caring. 4 Intervention implementation measures will also be assessed. Intervention: A psychotherapeutic intervention will be 8 sessions of 90 minutes in groups. This intervention has been initially developed for family caregivers of patients with dementia

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

International Nuclear Information System (INIS)

Dawood, S.

2016-01-01

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

Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study.

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

2012-01-01

To explore first-time primary caregivers' experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians. Design.  Qualitative interpretative phenomenological analysis. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data. Two competing themes were identified in the data, highlighting caregivers' contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs' concerns and young people's requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers' commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for

Informal caregiving burden and perceived social support in an acute stroke care facility.

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Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana

2018-04-05

Providing informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria. Ethical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants' level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers' and stroke survivors' socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05. The prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = - 0.295). Informal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities

Primary Caregivers Satisfaction and its Related Factors in Home Health Care Services

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Shu-Ping Wei

2011-06-01

Conclusion: This study showed that the overall perceived performance is higher than expectation for home health care service provided. The primary caregiver who was older than 30 years, who had lower education level, and other than siblings showed higher satisfaction. The four items that need improving included “home health care nurses will provide detailed description of services,” “home health care nurses will provide knowledge of illness,” “home health care nurses can complete the promised tasks,” and “home health care nurses will actively inquire patient’s conditions and needs.”

Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central-Southern Andes.

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Caqueo-Urízar, Alejandra; Breslau, Joshua; Gilman, Stephen E

2015-02-01

The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical-religious. The sample comprised 253 patients (n=117 Aymara, and n=136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient's primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and non-Aymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia. Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI)=0.05, 0.62) than non-Aymara caregivers. Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical-religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment. © The Author(s) 2014.

Self-esteem mediates the relationship between volunteering and depression for African American caregivers.

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Shen, Huei-Wern; Pickard, Joseph G; Johnson, Sharon D

2013-01-01

Research on the influence of volunteering on mental health outcomes has not placed enough focus on African American female caregivers who are at risk for adverse outcomes such as depression. This study addresses this gap by examining the mechanism through which volunteering might influence depressive symptoms using data collected from 521 African American female caregivers of older adults. Regression results indicate that although volunteering is inversely associated with depressive symptoms, self-esteem mediates this relationship. Findings suggest inclusion in volunteering for African American female caregivers may be relevant to promotion of their mental well-being.

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India.

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Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul

In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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

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Farahnaz Mohamadi Shahbalaghi

2006-10-01

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

Randomized controlled trial of caregiver training for HIV-infected child neurodevelopment and caregiver well being.

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Bass, Judith K; Opoka, Robert; Familiar, Itziar; Nakasujja, Noeline; Sikorskii, Alla; Awadu, Jorem; Givon, Deborah; Shohet, Cilly; Murray, Sarah M; Augustinavicius, Jura; Mendelson, Tamar; Boivin, Michael

2017-08-24

HIV infection places children at neurodevelopmental risk; for young children in poverty, risk is compounded by compromised caregiving quality. The mediational intervention for sensitizing caregivers (MISC) program trained caregivers on fostering daily interactions with young children. We hypothesized that MISC could enhance neurodevelopment of rural Ugandan HIV-infected children and improve mental health outcomes of their caregivers, which might mediate improved caregiving quality. A randomized trial of HIV-infected young children (ages 2-5 years) and their female caregivers; cluster randomization was to MISC or a nutrition curriculum. A total of 18 geographic clusters in rural Uganda. Children and caregivers were evaluated at baseline, 6 months, 1 year, and 1-year post-training. Mullen Scales of Early Learning, the Color-Object Association Test for memory, the Early Childhood Vigilance Test of attention, and the Behavior Rating Inventory of Executive Function for the children. Caregivers completed measures of depression and anxiety symptoms and daily functioning. MISC had a significant impact on postintervention receptive language (adjusted mean difference = 3.13, 95% confidence interval 0.08, 6.18) that persisted at 1-year follow-up. MISC caregivers reported significantly less functional impairment postprogram (adjusted mean difference = -0.15, 95% confidence interval -0.28, -0.01). Other outcomes were NS. Both intervention conditions resulted in improvements in the study children over time. MISC showed additional impacts on child language and caregiver well-being. Future directions that include assessing the extent enhanced language development resulting from improved caregiving may better prepare impoverished children for school.

Predictors of Depressive Symptoms in Primary Caregivers of Young Children with or at Risk for Developmental Delay

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Feldman, M.; McDonald, L.; Serbin, L.; Stack, D.; Secco, M. L.; Yu, C. T.

2007-01-01

Background: Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child,…

Family caregivers of patients with frontotemporal dementia: An integrative review.

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Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

2016-03-01

The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique

Feasibility of a patient-driven approach to recruiting older adults, caregivers, and clinicians for provider-patient communication research.

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Lingler, Jennifer H; Martire, Lynn M; Hunsaker, Amanda E; Greene, Michele G; Dew, Mary Amanda; Schulz, Richard

2009-07-01

This report describes the implementation of a novel, patient-driven approach to recruitment for a study of interpersonal communication in a primary care setting involving persons with Alzheimer's disease (AD), their family caregivers, and their primary care providers (PCPs). Patients and caregivers were centrally recruited from a university-based memory clinic, followed by the recruitment of patient's individual PCPs. Recruitment tracking, naturalistic observation, and survey methods were used to evaluate recruitment success. About half of the patients and caregivers (n = 54; 51%) and most of the PCPs (n = 31; 76%) who we approached agreed to an audiorecording of the patient's next PCP visit. Characteristics of patient, caregiver, and PCP participants were compared to those of nonparticipants. Patient characteristics did not differ by participation status. Caregivers who volunteered for the study were more likely to be female and married than were those who declined to participate. Compared to nonparticipants, PCPs who agreed to the study were appraised slightly more favorably by patients' caregivers on a measure of satisfaction with care on the day of the visit. The vast majority of participating PCPs (95%) reported that the study had little or no impact on the flow of routine clinical operations. Findings support the feasibility of a patient-driven approach to recruitment for studies involving multiple linked participants. Our discussion highlights possible advantages of such an approach, including the potential to empower patient participants while achieving maximum variability within the pool of clinician participants.

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

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Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

2014-01-01

Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

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

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López-Ortega, Mariana; García-Peña, Carmen; Granados-García, Víctor; García-González, José Juan; Pérez-Zepeda, Mario Ulises

2013-02-08

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. 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. 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 overall economic burden to

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

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Van Houtven Courtney

2011-11-01

Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient

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

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Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

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

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

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Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia

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

Pediatric SCI/D caregiver mental health and family dynamics in Colombia, South America.

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Doyle, Sarah T; Perrin, Paul B; Nicholls, Elizabeth; Olivera, Silvia Leonor; Quintero, Lorena Medina; Otálvaro, Nadezda Yulieth Méndez; Arango-Lasprilla, Juan Carlos

2016-01-01

This study examined the connections between family dynamics and the mental health of caregivers of youth with spinal cord injuries/disorders (SCI/D) caregivers from Colombia, South America. It was hypothesized that lower family functioning would be associated with poorer caregiver mental health. A cross-sectional study of self-report data collected from caregivers through the Hospital Universatario Hernando Moncaleano Perdomo in Neiva, Colombia. Thirty caregivers of children with SCI/D from Nevia, Colombia who were a primary caregiver for ≥3 months, providing care for an individual who was ≥6 months post-injury/diagnosis, familiar with the patient's history, and without neurological or psychiatric conditions. Caregivers' average age was 41.30 years (SD = 10.98), and 90% were female. Caregivers completed Spanish versions of instruments assessing their own mental health and family dynamics. Family dynamics explained 43.2% of the variance in caregiver burden and 50.1% of the variance in satisfaction with life, although family dynamics were not significantly associated with caregiver depression in the overall analysis. Family satisfaction was the only family dynamics variable to yield a significant unique association with any index of caregiver mental health (satisfaction with life). If similar findings emerge in future intervention research, interventions for pediatric SCI/D caregivers in Colombia and other similar global regions could benefit from including techniques to improve family dynamics, especially family satisfaction, given the strong potentially reciprocal connection between these dynamics and caregiver mental health. The degree of disability resulting from SCI/D can vary greatly depending on the severity and level of the lesion, though permanent impairment is often present that profoundly impacts both physical and psychological functioning. Very little is known about the impact of pediatric SCI/D in developing countries, despite the high rates of

Effects of primary caregiver participation in vestibular rehabilitation for unilateral neglect patients with right hemispheric stroke: a randomized controlled trial

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Dai CY

2013-04-01

Full Text Available Chin-Ying Dai,1,2 Yu-Hui Huang,3,4 Li-Wei Chou,5,6 Shiao-Chi Wu,7 Ray-Yau Wang,8 Li-Chan Lin9 1School of Nursing, National Yang Ming University, Taipei, Taiwan; 2Department of Nursing, Central Taiwan University of Science and Technology, Taichung, Taiwan; 3Department of Physical Medicine and Rehabilitation, Chung Shan Medical University Hospital, Taichung, Taiwan; 4School of Medicine, Chung Shan Medical University, Taichung, Taiwan; 5Department of Physical Medicine and Rehabilitation, China Medical University Hospital, Taichung, Taiwan; 6School of Chinese Medicine, College of Chinese Medicine, China Medical University, Taichung, Taiwan; 7Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan; 8Department of Physical Therapy and Assistive Technology, National Yang-Ming University, Taipei, Taiwan; 9Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan, Republic of China Introduction: The current study aims to investigate the effects of primary caregiver participation in vestibular rehabilitation (VR on improving the measures of neglect, activities of daily living (ADL, balance, and falls of unilateral neglect (UN patients. Methods: This study is a single-blind randomized controlled trial. Both experimental (n = 24 and control groups (n = 24 received conventional rehabilitation. The experimental group undertook VR for a month. During the first and second weeks, a registered nurse trained the experimental group in VR. The primary caregivers in the experimental group supervised and guided their patients in VR during the third and fourth weeks. The outcome measures were neglect, ADL, balance, and falls. Results: The two groups of UN patients showed a significant improvement in neglect, ADL, and balance over time. Based on the generalized estimating equations model, an interaction was observed between groups and times. Significant interactions were observed between the VR group

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

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

2013-05-01

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

"Mi Bebé y Yo": A Primary Care Group for Latina/o Infants and Their Spanish-Speaking Caregivers

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Margolis, Kate L.; Dunn, Dena M.; Herbst, Rachel Becker; Bunik, Maya; Buchholz, Melissa; Martinez, Dailyn; Talmi, Ayelet

2015-01-01

Culturally informed health interventions for linguistic minorities are crucial in promoting optimal child development. "Mi Bebé y Yo" is a primary care group for Spanish-speaking, Latina/o caregivers and their babies during their first year. Group visits occur in conjunction with well-baby checks and are designed to support families with…

A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention.

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Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J

2013-05-01

(1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

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

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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.

Feasibility of a patient-driven approach to recruiting older adults, caregivers, and clinicians for provider–patient communication research

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Lingler, Jennifer H.; Martire, Lynn M.; Hunsaker, Amanda E.; Greene, Michele G.; Dew, Mary Amanda; Schulz, Richard

2009-01-01

Purpose This report describes the implementation of a novel, patient-driven approach to recruitment for a study of interpersonal communication in a primary care setting involving persons with Alzheimer’s disease (AD), their family caregivers, and their primary care providers (PCPs). Data sources Patients and caregivers were centrally recruited from a university-based memory clinic, followed by the recruitment of patient’s individual PCPs. Recruitment tracking, naturalistic observation, and survey methods were used to evaluate recruitment success. Conclusions About half of the patients and caregivers (n = 54; 51%) and most of the PCPs (n = 31; 76%) who we approached agreed to an audiorecording of the patient’s next PCP visit. Characteristics of patient, caregiver, and PCP participants were compared to those of nonparticipants. Patient characteristics did not differ by participation status. Caregivers who volunteered for the study were more likely to be female and married than were those who declined to participate. Compared to nonparticipants, PCPs who agreed to the study were appraised slightly more favorably by patients’ caregivers on a measure of satisfaction with care on the day of the visit. The vast majority of participating PCPs (95%) reported that the study had little or no impact on the flow of routine clinical operations. Implications for research Findings support the feasibility of a patient-driven approach to recruitment for studies involving multiple linked participants. Our discussion highlights possible advantages of such an approach, including the potential to empower patient participants while achieving maximum variability within the pool of clinician participants. PMID:19594656

Mental health and parenting characteristics of caregivers of children with spina bifida.

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Malm-Buatsi, Elizabeth; Aston, Christopher E; Ryan, Jamie; Tao, Yeun; Palmer, Blake W; Kropp, Bradley P; Klein, Jake; Wisniewski, Amy B; Frimberger, Dominic

2015-04-01

Within the chronic medical illness literature, associations exist between caring for an affected child and parent mental health. The few studies examining both mothers and fathers provide mixed results. The purpose of this study is to examine associations between caregiver anxiety, depression, and parenting variables in caregivers of youth with SB as these relate to marital status, age, education, household income, work status, and child's severity of SB. The aim of this study is to examine associations between anxiety, depression, and parenting variables in caregivers of youth with spina bifida and how they relate to demographic and disease variables. Exploratory analyses examined the relationship between participation in support activities and depressive and anxious symptomatology and parenting characteristics. Eighty-four primary caregivers (49 mothers) of 51 youth with spina bifida completed measures of depressive and anxious symptomology, parenting stress, parent overprotection, and perceived child vulnerability. There were differences between mothers and fathers on several parenting characteristics; however, these were related more to marital status and employment than to gender of the caretaker per se. In the 33 married/remarried couples for whom both spouses participated, stress for the mothers was correlated with stress for the fathers. This correlation was strongest in the 12 married couples in which the mother works. Higher perceived vulnerability scores were reported in parents of SB patients in the younger age group, especially preschoolers (0-4 years). Parents of children with shunts reported more anxiety, depression and perceived child vulnerability. Both male and female caregivers of younger children reported significantly higher protectiveness scores. Involvement in recreational activities with other families affected by SB was associated with more positive parenting characteristics for mothers. Stress and protectiveness were found to be positively

Validity and reliability of the Early Childhood Caries Perceptions Scale (ECCPS) to assess health beliefs related to early childhood caries prevention among primary caregivers of children under 5 years of age.

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Pisarnturakit, Pagaporn P; Shaw, Bret R; Tanasukarn, Chanuantong; Vatanasomboon, Paranee

2012-09-01

Primary caregivers' child oral health care beliefs and practices are major factors in the prevention of Early Childhood Caries (ECC). This study assessed the validity and reliability of a newly-developed scale--the Early Childhood Caries Perceptions Scale (ECCPS)--used to measure beliefs regarding ECC preventive practices among primary caregivers of young children. The ECCPS was developed based on the Health Belief Model. The construct validity and reliability of the ECCPS were examined among 254 low-socioeconomic status primary caregivers with children under five years old, recruifed from 4 Bangkok Metropolitan Administration Health Centers and a kindergarten school. Exploratory factor analysis (EFA) revealed a four-factor structure. The four factors were labeled as Perceived Susceptibility, Perceived Severity, Perceived Benefits and Perceived Barriers. Internal consistency measured by the Cronbach's coefficient alpha for those four factors were 0.897, 0.971, 0.975 and 0.789, respectively. The ECCPS demonstrated satisfactory levels of reliability and validity for assessing the health beliefs related to ECC prevention among low-socioeconomic primary caregivers.

Caregiver burden and nonachievement of healthy lifestyle behaviors among family caregivers of cardiovascular disease patients.

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Mochari-Greenberger, Heidi; Mosca, Lori

2012-01-01

To determine whether caregiver burdens are associated with lifestyle behaviors 1 year following the hospitalization of a family member with cardiovascular disease (CVD). Prospective follow-up study of National Heart Lung and Blood Institute sponsored Family Intervention Trial for Heart Health participants. Hospital-based recruitment/baseline visit with 1-year follow-up. Family members of hospitalized CVD patients (N  =  423; 67% female; 36% racial/ethnic minority; mean age 49 years). Systematic evaluation at 1 year to determine heart-healthy diet (defined as caregiver burdens (five domains: employment, financial, physical, social, and time; Caregiver Strain Questionnaire). Logistic regression adjusted for covariates. Heart-healthy diet was less frequent among caregivers citing feeling overwhelmed (odds ratio [OR]  =  .50; 95% confidence interval [CI]  =  .26-.97), sleep disturbance (OR  =  .51; 95% CI  =  .27-.96), financial strain (OR  =  .41; 95% CI  =  .20-.86), upsetting behavior (OR  =  .48; 95% CI  =  .25-.92), and/or time demands (OR  =  .47; 95% CI  =  .26-.85) as burdens. Physical activity was less frequent among caregivers reporting financial strain (OR  =  .32; 95% CI  =  .13-.81) or upsetting patient behavior (OR  =  .33; 95% CI  =  .15-.76) as burdens. The most commonly cited caregiver burdens included changes in personal plans (39%), time demands (38%), and sleep disturbance (30%). Caregiver burdens were associated with nonachievement of heart-healthy diet and physical activity behaviors among family caregivers 1 year after patient discharge. When developing heart-health promotion interventions, caregiver burden should be considered as a possible barrier to prevention among family members of CVD patients.

The factors affecting the burden of care of informal caregivers of the elderly in Tehran

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Hosein Rohani

2015-03-01

Full Text Available Background: Rapid growth of the elderly population followed by an increase in long term care will lead to a rise in the health costs of the elderly and the healthcare burden of their caregivers. This study was carried out to examine the factors affecting the burden of care for informal caregivers in order to design better interventional programs and to reduce this burden and unwanted consequences. Methods: This cross-sectional study was conducted in retirement associations of Tehran in 2012. The study population included 200 elderly and 200 caregivers. The instruments for data collection included two questionnaires about the elderly and their caregivers that were completed in a face-to-face interview. The data were analyzed by SPSS-16 software using multiple linear regression. Results: About 60% of the elderly and 34% of caregivers were female. Burden of care was low in 70%, moderate in 11.5%, and high in 18.5% of caregivers. Female caregivers were suffering 1.42 unit more burden of care than male caregivers (P= 0.027. Also, there was a significant association between the burden of care of untrained caregivers and instrumental activities of the daily living of the elderly (P< 0.001, daily activity of the elderly (P<0.001 and adequacy of wage (= 0.001. Conclusion: According to the results, being a female caregiver, daily physical activity of the elderly, instrumental activities of the daily living of the elderly, and adequacy of the wage were the most important factors in increasing the burden of care for caregivers of the elderly.

The Effects of Caregiving Resources on the Incidence of Depression over One Year in Family Caregivers of Disabled Elderly

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矢嶋, 裕樹

2007-01-01

The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...

The effects of caregiving resources on the incidence of depression over one year in family caregivers of disabled elderly

OpenAIRE

Yajima, Yuki; Tsutsui, Takako; Nakajima, Kazuo; Li, Hui-Ying; Takigawa, Tomoko; Wang, Da-Hong; Ogino, Keiki

2007-01-01

The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...

Effects of a Psychological Intervention in a Primary Health Care Center for Caregivers of Dependent Relatives: A Randomized Trial

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Rodriguez-Sanchez, Emiliano; Patino-Alonso, Maria C.; Mora-Simon, Sara; Gomez-Marcos, Manuel A.; Perez-Penaranda, Anibal; Losada-Baltar, Andres; Garcia-Ortiz, Luis

2013-01-01

Purpose: To assess, in the context of Primary Health Care (PHC), the effect of a psychological intervention in mental health among caregivers (CGs) of dependent relatives. Design and Methods: Randomized multicenter, controlled clinical trial. The 125 CGs included in the trial were receiving health care in PHC. Inclusion criteria: Identifying…

Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

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Taub Anita

2004-01-01

Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.

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

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

2016-12-01

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

Self-administered acupressure for symptom management among Chinese family caregivers with caregiver stress: a randomized, wait-list controlled trial.

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Tiwari, Agnes; Lao, Lixing; Wang, Amy Xiao-Min; Cheung, Denise Shuk Ting; So, Mike Ka Pui; Yu, Doris Sau Fung; Lum, Terry Yat Sang; Yuk Fung, Helina Yin King; Yeung, Jerry Wing Fai; Zhang, Zhang-Jin

2016-10-28

Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. This study will provide evidence for the effectiveness of self-administered acupressure in reducing stress and improving

Prevalence of Mental Health Disorders Among Caregivers of Patients With Alzheimer Disease.

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Sallim, Adnaan Bin; Sayampanathan, Andrew Arjun; Cuttilan, Amit; Chun-Man Ho, Roger

2015-12-01

The overall prevalence of mental health disorders among caregivers of patients with Alzheimer disease (AD) remains unclear. This meta-analysis aims to evaluate the prevalence of various mental health disorders among caregivers of patients with AD globally and to determine factors that predispose to development of the aforementioned, namely gender of caregiver, gender of patient, and caregiver-patient relationship. A total of 17 studies were eligible for systematic review and meta-analysis. A meta-analysis of published work was performed using the random effect model. Data analysis was done with RevMan 5.3. A total of 10,825 caregivers were assessed. The aggregate prevalence of depression among caregivers was 34.0%, anxiety at 43.6%, and use of psychotropic drugs at 27.2%. Meta-analysis revealed the odds of having of depression was 1.53 times higher in female caregivers (95% confidence interval [CI] 1.29-1.83; I(2) = 7%; Z = 4.78; P mental health disorders, particularly depression and anxiety, as compared with the general population and with their counterparts caring for patients with other illnesses. The higher prevalence is mainly observed in female caregivers, caregivers with male care-recipients, and caregivers who have a spousal relationship with care-recipients. Prevalence of anxiety was also notably higher in this cohort but more research needs to be done in this area. Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

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

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Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia

2014-03-25

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. 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). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. 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. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data

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

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

2011-01-01

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

A Pilot Trial of a Stress Management Intervention for Primary Caregivers of Children Newly Diagnosed With Cancer: Preliminary Evidence That Perceived Social Support Moderates the Psychosocial Benefit of Intervention

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Marsland, Anna L.; Long, Kristin A.; Howe, Chelsea; Thompson, Amanda L.; Tersak, Jean; Ewing, Linda J.

2013-01-01

Objectives (1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. Methods 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived str...

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

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Brehaut Jamie

2004-01-01

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

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

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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

Burden on informal caregivers of elderly cancer survivors: risk versus resilience.

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Jones, Simeon B W; Whitford, Hayley S; Bond, Melissa J

2015-01-01

This study assessed psychological morbidity and resilience, including the subjective burden of 76 caregivers of elderly cancer survivors utilizing a cross-sectional questionnaire. Participants were mainly elderly female spouses, sole-caregiving > 35 hours per week; 19.1% and 23.6% reported moderate or greater anxiety and depression, respectively. A significant regression model found depression, emotion-focused coping, and greater years since diagnosis as significant predictors of subjective caregiver burden. Thus, caregiving appears a dominant role for this group and the Brief Assessment Scale for Caregivers of the Medically Ill (BASC) appears to be an efficient screening tool for psychological morbidity in this under-supported group.

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

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

2018-01-01

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

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

NARCIS (Netherlands)

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

2008-01-01

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

Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

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Schüz, Benjamin; Czerniawski, Alana; Davie, Nicola; Miller, Lisa; Quinn, Michael G; King, Carolyn; Carr, Andrea; Elliott, Kate-Ellen J; Robinson, Andrew; Scott, Jenn L

2015-07-01

Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving. © 2015 The International Association of Applied Psychology.

Knowledge of malaria prevention among pregnant women and female caregivers of under-five children in rural southwest Nigeria

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Ayodeji M. Adebayo

2015-02-01

Full Text Available Introduction. The morbidity and mortality from malaria are still unacceptably high in the developing countries, especially among the vulnerable groups like pregnant women and under-five children, despite all control efforts. The knowledge about the preventive measures of malaria is an important preceding factor for the acceptance and use of malaria preventive measures like Insecticide Treated Nets (ITN by community members. Therefore, this study assessed the knowledge of malaria prevention among caregivers of under-five children and pregnant women in a rural community in Southwest Nigeria.Methodology. This is part of a larger malaria prevention study in rural Southwest Nigeria. A descriptive cross-sectional survey was conducted among pregnant women and caregivers of under-five children in Igbo-Ora, a rural town in Southwest Nigeria using a semi-structured, interviewer-administered questionnaire. Information was obtained on knowledge of malaria prevention, and overall composite scores were computed for knowledge of malaria prevention and ITN use. Data were analyzed using SPSS version 16. Associations between variables were tested using a Chi-square with the level of statistical significance set at 5%.Results. Of the 631 respondents, 84.9% were caregivers of under-five children and 67.7% were married. Mean age was 27.7 ± 6.3 years with 53.4% aged between 20 and 29 years. Majority (91.1% had at least primary school education and 60.2% were traders. Overall, 57.7% had poor knowledge of malaria prevention. A good proportion (83.5% were aware of the use of ITN for malaria prevention while 30.6% had poor knowledge of its use. Respondents who were younger (<30 years, had at least primary education and earn <10,000/per month had significantly poor knowledge of ITN use in malaria prevention. Majority (60.0% respondents had poor attitude regarding use of ITNs.Conclusion. This study showed that the knowledge of malaria prevention is still low among under

Providing care to relatives with mental illness: reactions and distress among primary informal caregivers.

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Chang, Sherilyn; Zhang, Yunjue; Jeyagurunathan, Anitha; Lau, Ying Wen; Sagayadevan, Vathsala; Chong, Siow Ann; Subramaniam, Mythily

2016-03-25

The responsibility of caring for relatives with mental illness often falls on the family members. It has been reported that the reactions to or consequences of providing care are what rendered the role of a caregiver challenging and hence a source of distress. This present study thus aimed to identify socio-demographic correlates of caregiving experiences using the Caregiver Reaction Assessment (CRA) and to examine the associations between reactions to caregiving and psychological distress. A total of 350 caregivers with relatives seeking outpatient care at a tertiary psychiatric hospital were recruited for this study. Distress among caregivers was assessed using the Patient Health Questionnaire (PHQ-9). The CRA was administered to measure reactions from caregiving in four domains including impact on schedule and health (ISH), impact on finance (IF), lack of family support (LFS) and caregiver esteem (CE). Participants also completed a questionnaire that asked for their socio-demographic information. Multivariable linear regression analysis was first used with domains of CRA as outcome variables and socio-demographic variables as predictors in the models. The next set of multivariable linear regression analysis tested for the association between CRA domains and distress with CRA domain scores as outcome variables and PHQ-9 score as predictor, controlling for socio-demographic variables. Socio-demographic correlates of CRA domains identified were age, education, employment, income and ethnicity. Domain scores of CRA were significantly associated with PHQ-9 score even after controlling for socio-demographic variables. A higher distress score was associated with greater impact felt in the domain of ISH (β = 0.080, P social care support in these domains may help to address caregiver distress.

EFFECTS OF REHABILITATION SERVICES ON ANXIETY, DEPRESSION, CARE-GIVING BURDEN AND PERCEIVED SOCIAL SUPPORT OF STROKE CAREGIVERS

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Ali Yavuz Karahan

2014-01-01

Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with

Caregiver and expecting caregiver support for early peanut introduction guidelines.

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Greenhawt, Matthew; Chan, Edmond S; Fleischer, David M; Hicks, Allison; Wilson, Rachel; Shaker, Marcus; Venter, Carina; Stukus, David

2018-03-07

Recent guidelines recommend early peanut introduction (EPI) beginning around 4 to 6 months of age in infants with severe eczema and/or egg allergy and around 6 months for all other infants. Caregiver preferences for such practices are unknown. We explored preferences for EPI and in-office allergy risk assessment (IRA) through a nationally representative survey of expecting (n = 1,000) and new caregivers of infants younger than 1 year (n = 1,000). Among a primarily female (99.7%), married (80.3%), and white (74.4%) sample, 29% had no or vague awareness of the new guidelines, 61% had no or minimal concern for their child developing food allergy, but 54% felt timing of food introduction has moderate to strong importance for developing food allergy. Only 31% expressed willingness for EPI before or around 6 months of age, with 40% reporting willingness to introduce peanut after 11 months of age, similar to tree nuts and seafood. However, 60% reported willingness to introduce egg before 8 months of age. A total of 51% and 56.8% were unwilling to allow IRA methods, such as skin testing and oral challenge, before 11 months of age, respectively. Odds of willingness to delay peanut introduction (odds ratio, 0.79; 95% confidence interval, 0.65-0.96) and undergo challenge (odds ratio, 0.67; 95% confidence interval, 0.54-0.82) after 6 months of age were lower among expecting caregivers. Among new and expecting caregivers, there is poor current willingness and questionable support for early allergenic solid food recommendations, including IRA before introduction. Willingness was better among expecting vs current caregivers. These trends underscore a need for broader formal implementation planning to facilitate early allergen introduction and maximize its preventive benefits. Copyright © 2018 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers.

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Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed

2014-01-01

Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.

Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties.

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Leggett, Amanda N; Polenick, Courtney A; Maust, Donovan T; Kales, Helen C

2018-03-19

Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being.

The presence of a primary male caregiver affects children's ...

African Journals Online (AJOL)

caregiver has an influence, direct or indirect, on children's language skills. Keywords: ... the presence/absence of a father figure on language development were mainly conducted in ... centres via the classroom teachers or day mothers.

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

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

2018-01-22

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

Perceived Stress in Family Caregivers of Individuals With Mental Illness.

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Masa'Deh, Rami

2017-06-01

The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.]. Copyright 2017, SLACK Incorporated.

Anxiety, stress and depression in family caregivers of the mentally ill.

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Cabral, Lídia; Duarte, João; Ferreira, Manuela; dos Santos, Carlos

2014-11-01

The current policy guidelines on mental health aim to keep the mentally ill within the community, with the development of social support, including families, hence the emergence of the role of the family caregiver. To identify socio-demographic variables influencing anxiety, depression and stress for the informal caregivers of the mentally ill; to determine the influence of family background variables on caregiver anxiety, depression and stress; to analyse the relationship between social support and caregiver overload with caregiver anxiety, depression and stress. Cross-sectional, descriptive and correlational study with 104 caregivers, mostly female (62.5%), aged between 22 and 77 years with a mean age of 52.03 years. The following were used as instruments: the Family Apgar Scale; the Satisfaction with Social Support Scale (ESSS); the Caregiver Overload Scale (ESC); the Anxiety, Depression and Stress Scales (EADS-21). We found that females have higher rates (Panxiety, depression and stress; participants with less education have more anxiety than those with higher and secondary education (P=.001); caregivers living in rural areas have higher levels of depression (P=.044) and stress (P=.041); those who perceive belonging to families with marked dysfunctions have higher levels of depression (P=.0.001) and stress (P=.000); the higher the overload, the higher the levels of anxiety (P=.002), depression and stress (P=.000). I tis necessary to develop strategies for local and community intervention to promote mental health and prevent mental illness. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

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

Directory of Open Access Journals (Sweden)

Ania Wajnberg MD

2016-09-01

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

Evaluation of primary health workers training program to provide psychoeducation to family caregivers of persons with psychotic disorder

Directory of Open Access Journals (Sweden)

Carla Raymondalexas Marchira

2016-02-01

Full Text Available ABTRACT Many persons suffering psychotic illnesses, such as schizophrenia, are largely untreated in low income countries. In these settings, most persons with severe mental illness live with their families. Thus, families play a particular critical role in determining whether a person with a psychotic illness will receive treatment and what the quality of treatment. Psychoeducation has proven to be extremely effective in helping families develop the knowledge and skills which is necessary to help their family members. Indonesia has a national policy to integrate the management of mental health problems into the primary health care system. However, in practice, such care does not implemented effectively. A preliminary study in primary health centers in two districts of Bantul and Gunung Kidul regency, Yogyakarta province, showed that there was very little or there is not any training for health care workers on diagnosis and treatment of psychotic disorder. This study was conducted to evaluate the effectiveness of the training program for health workers in three primary health centers in Yogyakarta, Indonesia, to provide psychoeducation to family caregivers for persons with psychotic disorder. A quasi-experimental study with the approach of one group pre and posttest design was performed in this study. Fortythree health workers in 3 primary health centers in Bantul and Gunung Kidul, Yogyakarta were trained every week for a month to provide psychoeducation to family caregivers who live with psychotic disorder patient. Result showed that the baseline score of knowledge of schizophrenia among health workers in 3 primary health centers in Bantul and Gunung Kidul before training were not significantly different (p=0.162. After the psychoeducation training program there were significantly different (p=0.003 of the score of knowledge of schizophrenia among health workers in 3 primary health care centers compared with before training. For conclusion, the

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

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Toyama, Hiroko; Honda, Akiko

2016-01-01

Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss. PMID:28462354

Family Conflict as a Mediator of Caregiver Strain

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

2006-01-01

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

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

OpenAIRE

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

2014-01-01

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

Mothers' Perspectives on the Development of Their Preschoolers' Dietary and Physical Activity Behaviors and Parent-Child Relationship: Implications for Pediatric Primary Care Physicians.

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Pratt, Keeley J; Van Fossen, Catherine; Cotto-Maisonet, Jennifer; Palmer, Elizabeth N; Eneli, Ihuoma

2017-07-01

The study explores female caregivers' reflections on their relationship with their child (2-5 years old) and the development of their child's dietary and physical activity behaviors. Five, 90-minute semistructured focus groups were conducted to inquire about children's growth, eating behaviors and routines, physical activity, personality, and the parent-child relationship. Nineteen female caregivers diverse in race/ethnicity, age, and educational attainment participated. Participants reported that they maintained a schedule, but needed to be flexible to accommodate daily responsibilities. Family, social factors, and day care routines were influences on their children's behaviors. The main physical activity barriers were safety and time constraints. Guidance from pediatric primary care providers aimed at supporting female caregivers to build a positive foundation in their parent-child relationship, and to adopt and model healthy diet and physical activity behaviors that are respectful of schedules and barriers should be a priority for childhood obesity prevention.

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

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

2014-01-01

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

Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

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Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

2016-03-01

To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

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

OpenAIRE

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

2016-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, 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, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55...

Caregiver's depressive symptoms and asthma control in children from an underserved community.

Science.gov (United States)

Rioseco, Andrea; Serrano, Carolina; Celedón, Juan C; Padilla, Oslando; Puschel, Klaus; Castro-Rodriguez, Jose A

2017-12-01

Caregiver's or maternal depression has been associated with increased asthma morbidity in children from prosperous nations, but little is known about this link in low and middle-income countries. To examine if caregiver's depressive symptoms are associated with poor asthma control and abnormal immune responses in school-aged children. Case-control study of 87 asthmatic children (aged 4-11 years) attending a primary care clinic in an underserved area of Santiago (Chile). Cases were children with poor asthma control (Child Asthma Control Test [cACT] asthma control (cACT ≥20 points). The Beck Depression Inventory-II (BDI) and a locally validated family health vulnerability test (SALUFAM) were used to assess caregivers' depression and family health vulnerability. Serum from participating children was assayed for IFN-γ, IL-4, IL-13, TGF-β, cortisol, and total IgE. The mean (SD) age of study participants was 8.23 (2.15 years), and 55.2% were females. Use of inhaled corticosteroids (ICS), family health vulnerability, and caregiver's depressive symptoms were significantly more common in cases than in controls (65.4% vs. 34.6%, p = 0.003; 41.3% vs. 24.8%, p = 0.07; and 39.1% vs. 19.5%, p = 0.04, respectively). There was no significant difference in the level of any serum biomarkers between groups. In a multivariate analysis, only ICS use was significantly associated with better asthma control (OR = 3.56 [1.34-9.48], p = 0.01). Presence of caregiver's depressive symptoms is associated with poor asthma control among children from an underserved community, but this association was no longer significant after accounting for ICS use.

Effects of Aerobic Training on Primary Dysmenorrhea Symptomatology in College Females.

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Israel, Richard G.; And Others

1985-01-01

This study investigated the effects of a 12-week aerobic training program on menstrual distress symptoms in college females with clinically diagnosed primary dysmenorrhea. The findings suggest that aerobic training can significantly reduce the symptoms associated with primary dysmenorrhea. (Author/MT)

[The profile of caregivers to pediatric patients with cystic fibrosis].

Science.gov (United States)

Alves, Stella Pegoraro; Bueno, Denise

2018-05-01

The scope of this study was to establish the profile of caregivers of pediatric patients diagnosed with Cystic Fibrosis (CF). It was a cross-sectional, descriptive and prospective study in which the caregivers of fibrocystic patients were interviewed during pharmaceutical consultation in a reference center of a University Hospital in southern Brazil. General information was obtained about the caregivers and about their understanding of the disease, drug consumption and dynamics of treatment at home and at school. Seventy-five caregivers were interviewed. Most of them were female, 37.3 years old on average, mothers of the patients who did not work outside the home. Seventy-one caregivers declared difficulties in drug acquisition and patient support associations were highlighted as the main alternative to avoid the interruption of treatment. Another fact observed was the overload of the caregiving process on the shoulders of only one caregiver resulting in social and economic impacts and changes to the family's daily routine. This fact emphasizes the need of intervention by a qualified multidisciplinary team to identify and alleviate difficulties, investing in interpersonal relations and administering care.

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

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Kong, Eun-Hi

2007-03-01

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

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

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

2018-01-01

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

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

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

2016-01-01

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

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

OpenAIRE

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

2017-01-01

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

Burden, resilience and coping in caregivers of patients with interstitial lung disease.

Science.gov (United States)

Shah, R J; Collard, H R; Morisset, J

Prior work has described the experience of caregiving in idiopathic pulmonary fibrosis, but the effect on caregivers in interstitial lung disease (ILD) has not been explored. Describe the burden, resilience, and health related quality of life (HRQoL) of caregivers of people with ILD. In a mixed methods study, ILD caregivers completed questionnaires and participated in focus groups. A qualitative thematic analysis of the focus group transcripts was conducted. Thirty seven caregivers completed the survey, and 15 participated in the focus groups. 65% were female; the average age was 66 (SD = 13). The mean Short Form-36 role emotional and mental health scores were 18 (SD = 4) and 46 (SD = 7). The focus groups identified 4 major themes: emotional burden, changes in relationship, coping strategies, and unmet needs of caregivers. Caregiving for patients with ILD significantly impairs HRQoL, particularly, emotional health. Increasing resources could improve the caregiving experience in ILD. Copyright © 2018 Elsevier Inc. All rights reserved.

Effects of structured group psychosocial support sessions on psychosocial wellbeing of children and their caregivers: a descriptive study.

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Humeid, Jasem

2018-02-21

Children aged 7-12 years and their caregivers participated in a series of group psychosocial support sessions, using standard manuals specifically developed for facilitating such sessions such as Children Affected by Armed Conflict and Joint Sessions. The sessions used various activities, including drawing, storytelling, folk games, and other activities, to provide participants with opportunities to express their feelings, learn and practice new coping skills, and interact with others. The aim of this study was to measure the effects of structured psychosocial support sessions on the psychosocial wellbeing of children and their caregivers in the Gaza Strip. This descriptive study involved children and female caregivers selected from six locations using a stratified sampling technique. External numerators collected data before and after the group sessions. Two interview questionnaires with questions about psychological and social status were used, one for children and one for caregivers. The caregivers' questionnaire also assessed their psychosocial knowledge. Adult participants and caregivers of participating children provided verbal consent. Data were analysed with SPSS, and a p value less than 0·05 indicated significance. 155 children (77 [50%] boys and 78 [50%] girls) and 155 female caregivers were enrolled from a population of 1720 children (50% boys and 50% girls) and 1720 female caregivers. The sessions improved psychosocial wellbeing in participants, with the average psychosocial wellbeing score increasing from 58% to 87% in children and from 69% to 84% in caregivers. Caregivers' knowledge increased from 70% to 82%. Improvement was found in the various aspects of psychosocial wellbeing. No differences were found with respect to location, sex, and age. Structured group sessions improved psychosocial wellbeing in children and caregivers and improved caregivers' knowledge. Given the design of this study, it is difficult to fully attribute these results to the

Substantial changes in mastery perceptions of dementia caregivers with the placement of a care recipient.

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Infurna, Frank J; Gerstorf, Denis; Zarit, Steven H

2013-03-01

The current study examined how a key component of caregiving stress processes, global mastery perceptions, changes with placing the care recipient in a nursing home or institution. We also explored the role of primary stressors in accounting for mastery changes with placement and whether characteristics of the caregiver and care recipient moderate reactions to placement. We applied multiphase growth curve models to prospective longitudinal data from 271 caregivers in the Caregiver Stress and Coping Study who experienced placement of their care recipient. Using a time-to/from-placement metric, we found that caregivers typically experienced declines in mastery preceding placement, followed by a significant increase within 1 year after placement and further increases thereafter. Corresponding changes in primary stressors (role overload) mediated the placement-related increase in mastery. Caregivers who reported more depressive symptoms and activities of daily living/instrumental activities of daily living dependencies of the care recipient were more likely to experience larger placement-related increases in mastery perceptions. Our findings suggest that placement alters psychological resources of caregivers and this effect is driven by corresponding changes in primary stressors. Findings also underscore the importance of examining change processes across salient life events and transitions.

Associations Between Orphan and Vulnerable Child Caregiving, Household Wealth Disparities, and Women's Overweight Status in Three Southern African Countries Participating in Demographic Health Surveys.

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Kanamori, Mariano J; Carter-Pokras, Olivia D; Madhavan, Sangeetha; Lee, Sunmin; He, Xin; Feldman, Robert H

2015-08-01

This study examines whether orphan and vulnerable children (OVC) primary caregivers are facing absolute household wealth (AWI) disparities, the association between AWI and women's overweight status, and the modifying role of OVC primary caregiving status on this relationship. Demographic Health Surveys data (2006-2007) from 20 to 49 year old women in Namibia (n = 6,305), Swaziland (n = 2,786), and Zambia (n = 4,389) were analyzed using weighted marginal means and logistic regressions. OVC primary caregivers in Namibia and Swaziland had a lower mean AWI than other women in the same country. In Zambia, OVC primary caregivers had a lower mean AWI score than non-primary caregivers living with an OVC but a higher mean AWI score than non-OVC primary caregivers. In Swaziland and Zambia, even small increases in household wealth were associated with higher odds for being overweight regardless of women's caregiving status. Only in Namibia, OVC primary caregiving modified the effect of the previous association. Among Namibian OVC primary caregivers, women who had at least medium household wealth (4 or more AWI items) were more likely to be overweight than their poorest counterparts (0 or 1 AWI items). OVC primary caregivers are facing household wealth disparities as compared to other women from their communities. Future studies/interventions should consider using population-based approaches to reach women from every household wealth level to curb overweight in Swaziland and Zambia and to focus on specific household wealth characteristics that are associated with OVC primary caregivers' overweight status in Namibia.

Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis.

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Chiang, C-Y; Lu, C-Y; Lin, Y-H; Lin, H-Y; Sun, F-K

2015-12-01

What is known on the subject? Suicide is a global mental health issue. Taking care of suicidal individuals is a substantial challenge. Most studies emphasize the suicidal individual. Few studies have emphasized the family caregivers of suicidal individuals. No study has explored the relationship between family caregivers' caring stress with suicidal attitudes and suicide care ability. What this paper adds to existing knowledge? The main results indicated that the older family caregivers tended to have a more negative attitude towards suicidal individuals. Female family caregivers' stress was higher than that of male family caregivers. A mild level of caring stress would help family caregivers have a more positive attitude towards suicidal individuals. Furthermore, a positive attitude would help family caregivers improve their caring ability. What are the implications for practice? Mental health nurses could help family caregivers, especially female family caregivers, reduce their holistic caring burden by looking for support resources and enhancing their coping strategies. Mental health nurses could help family caregivers promote positive attitudes towards suicidal relatives by understanding suicidal individuals' suffering. Suicide is a global mental health issue. Family caregivers play a key role in preventing suicide attempts. The aim of this study was to examine the relationship among stress due to the family caregiver's role, suicidal attitude of the family caregiver and suicide care ability among family caregivers. Additionally, instruments of caring stress, attitudes towards suicidal relatives and caring abilities used in the study were tested to measure construct validity. A cross-sectional correlational study was conducted with 164 family caregivers of people who are suicidal. The following three questionnaires were used: the Caring Stress Scale, the Suicidal Attitudes Scale and the Suicidal Caring Ability Scale. Structural equation modelling was performed

A multinational review of recent trends and reports in dementia caregiver burden.

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Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

2004-01-01

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

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

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Lee, Yeonjung; Tang, Fengyan

2015-06-01

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

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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Christian J. Hendriksz MD

2014-07-01

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

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

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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

The relationship between family obligation and religiosity on caregiving.

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Epps, Fayron

2014-01-01

The purpose of this study was to examine the relationship between family obligation and religiosity on the positive appraisal of caregiving among African-American, Hispanic and non-Hispanic Caucasian family caregivers of older adults. Roy's adaptation model guided formulation of the aims and study design. A cross-sectional, correlational study design was employed to examine the relationship amongst variables for the family caregiver participants. Study participants (N = 69) completed a demographic tool and four instruments the: (1) Katz index, (2) obligation scale, (3) Duke University religion index, and (4) positive appraisal of care scale. There was a significant correlation between family obligation and positive appraisal of caregiving. However, there was no relationship between the family caregiver's religiosity and positive appraisal of caregiving overall. Demographic variables were also examined to show a higher marginal mean for Hispanic primary caregivers in relation to the positive appraisal of caregiving. Future studies should consider replicating these findings in a larger sample to provide health care professionals with substantial evidence to incorporate culturally sensitive interventions aimed at promoting positive outcomes and healthy family behaviors. Copyright © 2014 Mosby, Inc. All rights reserved.

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

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Miyawaki, Christina E

2017-03-01

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

CAREGIVER'S DEPRESSIVE SYMPTOMS AND YOUNG CHILDREN'S SOCIOEMOTIONAL DEVELOPMENT DELAYS: A CROSS-SECTIONAL STUDY IN POOR RURAL AREAS OF CHINA.

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Wei, Qianwei; Zhang, Cuihong; Zhang, Jingxu; Luo, Shusheng; Wang, Xiaoli

2018-03-01

Poverty and its associated factors put people at risk for depression. The aims of this study were to describe the prevalence of depressive symptoms (DS) of primary caregivers and socioemotional development (SED) delays of young children in poor rural areas of China, and to explore the association between them. Cross-sectional data of 2,664 children aged 3 to 35 months and their primary caregivers were used for analysis. Characteristics of the child, caregiver, and family were collected through face-to-face caregiver interviews. DS were assessed by the Zung Self-Rating Depression Scale (W.W. Zung, 1965, as cited in World Health Organization, ), and SED was evaluated by the Ages and Stage Questionnaires: Social-Emotional (J. Squires, D. Bricker, & L. Potter, 1997). The χ 2 test, stratification analysis, and logistic regression analyses were used to explore the association. Among the caregivers, 40.3% (95% confidence interval [CI] [38.4, 42.1]), reported DS. Caregivers who were male, older and ethnic minorities as well as had a low level of education, a low family income, or more children were more likely to have DS. Of the children, 24.4% (95% CI [22.8, 26.0]) were recognized with SED delays. Older children displayed more delays than did younger children, but no significant differences between males and females were found. SED delays were significantly associated with mother outmigrating, male caregivers, older age, ethnic minorities, and low education or families with a single parent, low-income, and having more children. Caregivers having DS, odds ratio (OR) = 2.40, 95% CI [1.99, 2.88], was a significant predictor of increased odds of SED delays; other factors were single-parent family, OR = 1.99, 95% CI [1.37, 2.89], inadequate care, OR = 1.69, 95% CI [1.30, 2.21], physical punishment, OR = 1.61, 95% CI [1.33, 1.95], ethnic minorities, OR = 1.41, 95% CI [1.17, 1.71], and child age in months, OR = 1.03, 95% CI [1.02, 1.04], according to the logistic regression

A pilot study: pain, fatigue and stress in maternal relatives of adolescent female psychiatric inpatients assessed for juvenile primary fibromyalgia syndrome.

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Lommel, Karen; Bamford, Jaime; Jhavari, Malhar; Martin, Catherine; Crofford, Leslie

2011-01-01

This study was designed to assess the presence of pain and impaired functioning in the maternal relatives of adolescent females in an inpatient adolescent psychiatric population. We compared the relatives of adolescents who met the criteria for juvenile primary fibromyalgia syndrome (JPFS) to relatives of adolescents who did not meet the criteria for JPFS. A total of 55 biological maternal relatives of adolescent females admitted to a psychiatric unit were recruited to participate in the study. Participants completed four self-administered questionnaires: Multidimensional Fatigue Inventory, Fibromyalgia Impact Questionnaire, Medical Outcomes Survey (SF36v2), and the EPIFUND Health Survey. The maternal relatives of adolescents who met the criteria for JPFS did not score higher than the maternal relatives of adolescents who did not meet the criteria for JPFS. However, all maternal relatives consistently scored higher on self-reported measures of pain, impaired functioning, fatigue, and fibromyalgia symptoms than the average patient diagnosed with fibromyalgia or a chronic pain syndrome. Mood disorders and pain disorders share genetic risk factors and vulnerability. Future research is needed to further delineate other factors impacting the maternal caregivers' functioning. These could include stress associated with an adolescent child with psychiatric issues severe enough to warrant hospitalization.

Colorectal cancer patients' preferences for type of caregiver during survivorship care

NARCIS (Netherlands)

Wieldraaijer, T.; Duineveld, L. A. M.; Donkervoort, S. C.; Busschers, W. B.; van Weert, H. C. P. M.; Wind, J.

2018-01-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to

Usability of a Wearable Camera System for Dementia Family Caregivers

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Judith T. Matthews

2015-01-01

Full Text Available Health care providers typically rely on family caregivers (CG of persons with dementia (PWD to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86 who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.

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

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

2008-01-01

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

Sex disparities in access to caregiving in Parkinson disease.

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Dahodwala, Nabila; Shah, Krunal; He, Ying; Wu, Samuel S; Schmidt, Peter; Cubillos, Fernando; Willis, Allison W

2018-01-02

To compare access to caregiving between men and women with Parkinson disease (PD). This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver. A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders. Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed. Copyright © 2017 American Academy of Neurology.

Characteristics of female patients with primary lung cancer treated with radiotherapy

International Nuclear Information System (INIS)

Shiojima, Kazumi; Hayakawa, Kazushige; Nakayama, Yuko; Saito, Yoshihiro; Mitomo, Osamu; Katano, Susumu; Mitsuhashi, Norio; Niibe, Hideo

1993-01-01

From 1976 to 1985, 402 patients with primary lung cancer were treated with radiotherapy at our hospital. There were 75 female patients who formed the basis of our analysis. Comparing the characteristics of female and male patients, the predominant characteristics of the female patients were as follows; 1) larger proportion of the patients with adenocarcinoma, 2) higher percentage of stage 4 patients, 3) lower average age, 4) better performance status (PS), 5) lower frequency of lethal complications, and 6) higher frequency of more than two admissions. The prognosis of female patients was better than that of males. The favorable characteristics of female patients for prognosis, were lower average age, better PS, and lower frequency of lethal complications. A higher frequency of admission to hospital might be a favorable characteristics for female patients to extend survival in patients with recurrence disease. (author)

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

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

2017-08-01

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

Understanding caregivers' attitudes towards physical punishment of children: evidence from 34 low- and middle-income countries.

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Cappa, Claudia; Khan, Shane M

2011-12-01

This article presents findings on caregivers' attitudes towards physical punishment of children from 34 household surveys conducted in low- and middle-income countries in 2005 and 2006. The article analyzes the variability in attitudes by background characteristics of the respondents to examine whether various factors at the individual and family levels correlate with the caregivers' beliefs in the need for violent discipline. The article also examines to what extent attitudes influence behaviors and compares groups of respondents to see how attitudes relate to disciplinary practices across caregivers of different socio-economic backgrounds. The analysis is based on nationally representative data from 33 MICS and 1 DHS surveys. Questions on child discipline were addressed to the mother (or primary caregiver) of one randomly selected child aged 2-14 years in each household. The questionnaire asked whether any member of the household had used various violent and non-violent disciplinary practices with that child during the past month. Additionally, the interviewers asked the respondent if she believed that, in order to bring up that child properly, physical punishment was necessary. The sample included 166,635 mothers/primary caregivers. The analysis shows that, in most countries, the majority of mothers/primary caregivers did not think there was a need for physical punishment. Overall, characteristics such as household wealth and size, educational level and age, as well as place of residence were significantly associated with caregivers' attitudes. The analysis confirms that beliefs influence disciplinary practices to a large degree: in all the countries but two, children were significantly more likely to experience physical punishment if their mothers/primary caregivers thought such punishment was needed. However, large proportions of children were found to be subject to physical punishment even if their mothers/primary caregivers did not consider this method

Assessment of Health-Related Quality of Life among Primary Caregivers of Children with Autism Spectrum Disorders

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

2011-01-01

The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had…

Perceived quality of physiotherapy services among informal caregivers of children with cerebral palsy in Ibadan, Nigeria.

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Olaleye, Olubukola A; Hamzat, Talhatu K; Oloso, Modinat O

2015-01-01

Effective physiotherapy intervention for children with cerebral palsy (CP) requires that expectations of their caregivers be incorporated into treatment plans and strategies. This study explored the perceived Quality of Physiotherapy (QoP) for children with CP in Ibadan, Nigeria This cross-sectional survey explored the perceived QoP using the SERVQUAL instrument among informal caregivers of children with CP from two different healthcare facilities. Data was analysed using Mann Whiney U and Wilcoxon Signed Rank tests at p ≤ 0.05. Fifty-three informal caregivers (50 females, 3 males) of children with CP (32 males, 21 females) were surveyed. Fourth-fifths (81.13%) of the caregivers perceived the QoP service for their children as poor. The highest negative and positive ranks were in the tangible and responsiveness dimensions of the SERVQUAL respectively. The study demonstrated that caregivers of children with CP perceived the quality of physiotherapy provided for their children as poor. This poor perception is related more to the tangible dimension of care. Strategies to improve care environment for children with CP and their informal caregivers should be implemented to engender satisfaction with care.

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

Science.gov (United States)

Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

2017-07-01

Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Development of older men's caregiving roles for wives with dementia.

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Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas

2017-12-01

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices. © 2017 Nordic College of Caring Science.

Stigma towards mental illness: A hospital-based cross-sectional study among caregivers in West Bengal.

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Mukherjee, Shrabani; Mukhopadhyay, Dipta Kanti

2018-01-01

Stigma among caregivers of people with mental illness has a serious impact on the disease outcome and lives of people with mental illness as well as other family members. The objectives of this study were (i) To determine the level of self-perceived stigma toward mental illness, (ii) To measure perception to it among caregivers of people with mental illness, and (iii) To identify the factors associated with self-perceived stigma of caregivers. In this cross-sectional study, a structured interview was conducted among 200 caregivers of people with mental illness in the psychiatry outpatient department of a tertiary care hospital in West Bengal, India. Stigma and perception regarding mental illness were assessed with a validated 12-item Explanatory Model Interview Catalogue and 20-item perception scale, respectively. Information on their sociodemographic characteristics was also collected. Average stigma score (53.3 ± 13.2) was higher than 50% of maximum attainable score. Caregivers of higher age, female gender, low income, higher education, manual job, rural residence, and those who are single or widowed scored higher in stigma scale. Caregivers with female gender (P = 0.007) and rural residence (P = 0.01) were more likely to have stigma while the perception score was negatively associated (P illness and improve family life.

The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

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Ratkowski, Kristy L; Washington, Karla T; Craig, Kevin W; Albright, David L

2015-11-01

A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike. © The Author(s) 2014.

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

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

2007-04-01

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

Associations of self-reported and objectively measured sleep disturbances with depression among primary caregivers of children with disabilities

Directory of Open Access Journals (Sweden)

Orta OR

2016-06-01

Full Text Available Olivia R Orta,1 Clarita Barbosa,1 Juan Carlos Velez,2 Bizu Gelaye,1 Xiaoli Chen,1 Lee Stoner,3 Michelle A Williams,1 1Harvard T.H. Chan School of Public Health, Harvard University, Boston, MA, USA; 2Worker's Hospital, The Chilean Safety Association, Santiago, Chile; 3School of Sport and Exercise, Massey University, Wellington, New Zealand Objective: The objective of this study was to determine the association between sleep and depression using both self-reported (subjective and actigraphic (objective sleep traits. Methods: A cross-sectional study was conducted among 175 female primary caregivers of children with disabilities receiving care at a rehabilitation center in Punta Arenas, Chile. The eight-item Patient Health Questionnaire was used to ascertain participants' depression status. The Pittsburgh Sleep Quality Index was used to define subjective, or perceived, sleep quality. Wrist-worn actigraph monitors, worn for seven consecutive nights, were used to characterize objective sleep quality and disturbances. Interviewer-administered questionnaires were used to collect information on sociodemographic and lifestyle factors. Linear regression models were fit using continuous sleep parameters as the dependent variables and depression status as the independent variable. Multivariable models were adjusted for body mass index, marital status, smoking status, education level, and children's disabilities. Results: Using an eight-item Patient Health Questionnaire score ≥10, 26.3% of participants presented with depression. Depressed women were more likely to self-report overall poorer (subjective sleep compared to non-depressed women; however, differences in sleep were not consistently noted using actigraphic (objective sleep traits. Among the depressed, both sleep duration and total time in bed were significantly underestimated. In multivariable models, depression was negatively associated with sleep duration using both subjective (β=–0

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

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

2012-04-01

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

Stroke management: Informal caregivers' burdens and strians of caring for stroke survivors.

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Gbiri, Caleb Ademola; Olawale, Olajide Ayinla; Isaac, Sarah Oghenekewe

2015-04-01

Stroke survivors live with varied degrees of disabilities and cares are provided largely by the informal caregivers. This study investigated informal caregivers' burden and strains of caring for stroke patients. This study involved 157 (81 males and 76 females) informal caregivers of stroke survivors receiving care in all secondary and tertiary health institutions with physiotherapy services in Lagos State, Nigeria. Information was collected through self-administered questionnaire during clinic-hours. Data was analyzed using Spearman's Rank Correlation Coefficient. The patients' age ranged between 20 and 79 (mean=59.6 ± 14.6 years). Sixty-one had haemorrhagic stroke while 96 had ischaemic stroke. The informal caregivers' age was 39.2 ± 12.8 years (range: 17-36 years). More (60.8%) participants reported moderate objective while 79.2% had mild subjective burdens. The following factors significantly increased (Pfinancial well-beings of the informal caregivers. Caring for stroke survivors put social, emotional, health and financial burdens and strains on the informal caregivers. These burdens and strains increase with duration of stroke, intimacy, smaller number of caregivers and length of daily caregiving. Therefore, informal caregivers should be involved in the rehabilitation plan for stroke patients and their well-being should also be given adequate attention. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

Caring for seniors living with dementia means caring for their caregivers too.

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Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc

2018-01-22

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

Natural Helpers: A Study of Primary Caregivers among Migrant Women.

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Greenfield, Wilma L.

Natural helpers exist even among the most oppressed populations in this country, particularly migrant women, and recognition of their helping networks can give professional caregivers access to a resource that is often more adaptive, more efficient, and more humane than many static, impersonal, and obsolete human service bureaucracies. Migrant…

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

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Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

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

Child's autism severity: effect on West Virginia caregiver satisfaction with school services.

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Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child's autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR's from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child's autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child's Individualized Education Program(IEP) and evaluation of caregiver satisfaction with the IEP.

The psychological impact of child sexual abuse on primary caregivers

African Journals Online (AJOL)

Symptoms of psychological distress experienced by caregivers after an incident of CSA included anxiety, fear, depression, anger, insomnia, and functional impairment. About half the care givers in the study (n= 19, 55.88%) showed support and protection for their children; others (n = 15, 44.12%) were hostile toward and ...

CAREGIVER BURDEN AMONG PEOPLE CARING FOR PATIENTS WITH SCHIZOPHRENIA

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Shivani Bansal

2017-04-01

Full Text Available BACKGROUND Caregivers of patients suffering from mental illness report burden in different areas including effects on family functioning, psychological problems, financial problems and health. The aim of the study is to determine the sociodemographic profile and caregiver burden among caregivers of persons with schizophrenia and to study the effect of patients’ psychopathology on caregiver burden scale. MATERIALS AND METHODS The present study was conducted in the Psychiatry Department, Government Medical College, Amritsar. A sample size of 34 was taken who were primary caregivers (preferably parents or spouse of schizophrenia patients diagnosed using ICD10. Measures included caregiver’s demographic variables and caregiver’s burden using the Zarit burden interview and PANSS scale in patients. Statistical Analysis- Data was analysed using SPSS software version 21. RESULTS The mean age of the caregiver was 42 SD (12.16 years. The majority of the caregivers were parents, married and employed. The mean average score of the responses to Zarit burden interview was (SD=59.52 ± 20.92. Majority of the caregivers experienced severe burden (52.9%, 9 (26.4% caregivers had reported moderate burden and 6 (17.6% had reported mild burden. The mean duration of illness was 6.89 (SD=5.03 years. The level of burden experienced was significantly associated with total PANSS score, negative symptoms, positive symptoms, general psychopathology score and duration of schizophrenia illness (p=0.00. CONCLUSION There is need for psychological assistance and social support for the vulnerable caregivers to help them reduce the burden levels and employ positive coping strategies.

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

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Sorrell, Jeanne M

2014-03-01

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

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

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

2018-05-21

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

Caregivers' willingness‑to‑pay for a topical anesthetic cream for ...

African Journals Online (AJOL)

2013-09-17

Sep 17, 2013 ... Caregivers' willingness‑to‑pay (WTP) for the cream is necessary for its deployment. Objective: To .... Variables. N=188. Percentage. Gender. Male. 28. 14.9. Female. 160. 85.1 .... Table 4: Socioeconomic status discrepancies in.

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

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Tornatore, Jane B; Grant, Leslie A

2004-03-01

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

Marianismo and Caregiving Role Beliefs Among U.S.-Born and Immigrant Mexican Women.

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Mendez-Luck, Carolyn A; Anthony, Katherine P

2016-09-01

We aimed to explore how women of Mexican-origin conceptualized caregiving as a construct in terms of cultural beliefs, social norms, role functioning, and familial obligations. We examined the personal experiences of U.S-born and immigrant Mexican female caregivers to identify how these 2 groups differed in their views of the caregiver role. We conducted 1-time in-depth interviews with 44 caregivers living in Southern California. Our study was guided by marianismo, a traditional role occupied by women in the Mexican family. We analyzed data from a grounded theory approach involving the constant comparative method to refine and categorize the data. The majority of all caregivers had similar views about caregiving as an undertaking by choice, and almost all caregivers engaged in self-sacrificing actions to fulfill the marianismo role. Despite these similarities, U.S.-born and immigrant caregivers used different words to describe the same concepts or assigned different meanings to other key aspects of caregiving, suggesting that these 2 groups had different underlying motivations for caregiving and orientations to the role. Our findings highlight the complexity of language and culture in underlying caregiving concepts, making the concepts challenging to operationalize and define in a heterogeneous sample of Latinos. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Impacts of informal caregiver availability on long-term care expenditures in OECD countries.

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Yoo, Byung-Kwang; Bhattacharya, Jay; McDonald, Kathryn M; Garber, Alan M

2004-12-01

To quantify the effects of informal caregiver availability and public funding on formal long-term care (LTC) expenditures in developed countries. Secondary data were acquired for 15 Organization for Economic Cooperation and Development (OECD) countries from 1970 to 2000. Secondary data analysis, applying fixed- and random-effects models to time-series cross-sectional data. Outcome variables are inpatient or home heath LTC expenditures. Key explanatory variables are measures of the availability of informal caregivers, generosity in public funding for formal LTC, and the proportion of the elderly population in the total population. Aggregated macro data were obtained from OECD Health Data, United Nations Demographic Yearbooks, and U.S. Census Bureau International Data Base. Most of the 15 OECD countries experienced growth in LTC expenditures over the study period. The availability of a spouse caregiver, measured by male-to-female ratio among the elderly, is associated with a $28,840 (1995 U.S. dollars) annual reduction in formal LTC expenditure per additional elderly male. Availability of an adult child caregiver, measured by female labor force participation and full-time/part-time status shift, is associated with a reduction of $310 to $3,830 in LTC expenditures. These impacts on LTC expenditure vary across countries and across time within a country. The availability of an informal caregiver, particularly a spouse caregiver, is among the most important factors explaining variation in LTC expenditure growth. Long-term care policies should take into account behavioral responses: decreased public funding in LTC may lead working women to leave the labor force to provide more informal care.

Non-pharmacological interventions for caregivers of stroke survivors.

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Legg, Lynn A; Quinn, Terry J; Mahmood, Fahd; Weir, Christopher J; Tierney, Jayne; Stott, David J; Smith, Lorraine N; Langhorne, Peter

2011-10-05

A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs).  To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). We searched the Cochrane Stroke Group Trials Register (March 2011), CENTRAL (The Cochrane Library Issue 2010, Issue 4), MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) and 11 additional databases. In an effort to identify further published, unpublished and ongoing studies, we searched conference proceedings and trials registers, scanned reference lists of relevant articles and contacted authors and researchers. There were no language restrictions. We included RCTs if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. We included trials of interventions delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. We excluded studies which included stroke survivors and caregivers if the stroke survivors were the primary target of the intervention. Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. We sought original data from trialists. We categorised interventions into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. We resolved

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

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Yancura, Loriena A

2013-01-01

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

Self-Reported Work and Family Stress of Female Primary Teachers.

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Thomas, Narelle; Clarke, Valerie; Lavery, Judy

2003-01-01

Results of a self-report questionnaire indicated that female primary teachers in Australia report moderate levels of global, work, and family stress. Time and workload pressure was the major work stressor, and responsibility for child rearing the major family stressor. Work stress and home stress both impacted on each other. (EV)

Healthcare-seeking behaviour of primary caregivers for acute otitis media in children aged 6 months to Panama: results of a cross-sectional survey.

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Villarreal, Iris; Turner, Rosario; Jo, Hyejin; Park, Julie; Gemmen, Eric; Pirçon, Jean-Yves; Castrejon, Maria M; Hausdorff, William P

2017-01-05

Acute otitis media (AOM) is the most common bacterial childhood infection. However, caregivers with children having mild episodes often do not seek healthcare services, which may lead to an under-appreciation of the disease experienced by the community. The objectives of this survey were to estimate the proportion of primary caregivers who went to a healthcare facility when they suspected that their child aged 6 to Panama (March to May 2013). A 28-item paper questionnaire was administered to assess demographic data, AOM symptoms, as well as potential healthcare-seeking behaviour and factors influencing this behaviour. Potential confounding effects were individually assessed using Chi-squared or Cochran-Mantel-Haenszel tests, and all together in logistic regression models. The total number of eligible participants was 1330 (mean age 28.5 ± 8.0 years). Of these, 245 participants had at least one child whom they suspected had an AOM episode during the past 6 months. Of the 245 participants, 213 (86.9%) sought healthcare at a facility. Several factors were associated with healthcare usage: perceived severity of illness (p = 0.001), occupational status of the caregiver (p = 0.002), household income (p = 0.016) and length of time since the last suspected AOM episode (p = 0.032). When confronted with a child with obvious symptoms of AOM, the majority of caregivers reported seeking healthcare. This behaviour appeared to be associated with factors related to the severity of the illness, the length of time since the last episode, as well as with the income and occupational status of the caregivers themselves. As many episodes of AOM present with non-specific respiratory symptoms, our results apply only to caregivers who were confronted with children with an obvious symptom.

Caregiver-youth communication about sex in South Africa: the role of maternal child sexual abuse history.

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Anthony, Elizabeth R; Hipp, Tracy N; Darnell, Doyanne A; Armistead, Lisa; Cook, Sarah L; Skinner, Donald

2014-01-01

Much of the research on child sexual abuse focuses on negative outcomes. This brief report explores a potentially protective parenting behavior among black South African female caregivers with and without a child sexual abuse history. Using cross-sectional baseline data, we hypothesized that caregiver child sexual abuse history would be positively associated with caregiver-youth sex communication and this relationship would be strongest for girls. Youth whose caregiver experienced child sexual abuse were more likely to report communicating with their caregiver about sex than youth whose caregivers did not experience child sexual abuse; however, this relation did not hold for caregiver reported communication. Child sexual abuse survivors' ability and decision to discuss sex with their youth has the potential to protect youth from sexual risk and demonstrates resilience among a group rarely acknowledged for positive parenting practices.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers].

Science.gov (United States)

Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura

2016-12-01

To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. Primary, secondary and intermediate care. Osona (Barcelona). The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Health-related quality of life in caregivers of patients with Alzheimer's disease.

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Garzón-Maldonado, F J; Gutiérrez-Bedmar, M; García-Casares, N; Pérez-Errázquin, F; Gallardo-Tur, A; Martínez-Valle Torres, M D

2017-10-01

Informal caregivers of patients with Alzheimer's disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. Ninety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients' clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. At 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for 'physical function' and 'social function'. Baseline scores in our sample were lower than those of the general population. 'Vitality' is the dimension that presented the lowest scores. HRQOL in caregivers of patients with Alzheimer's disease deteriorates over time and is poorer than that of the age- and sex-matched general population. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Caregiver Depression

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... 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 ...

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

Science.gov (United States)

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

2014-10-27

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

LGBT Caregiver Concerns

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LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...

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

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

2009-01-01

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

Reconsidering the orphan problem: the emergence of male caregivers in Lesotho.

Science.gov (United States)

Block, Ellen

2016-01-01

Care for AIDS orphans in southern Africa is frequently characterized as a "crisis", where kin-based networks of care are thought to be on the edge of collapse. Yet these care networks, though strained by AIDS, are still the primary mechanisms for orphan care, in large part because of the essential role grandmothers play in responding to the needs of orphans. Ongoing demographic shifts as a result of HIV/AIDS and an increasingly feminized labor market continue to disrupt and alter networks of care for orphans and vulnerable children. This paper examines the emergence of a small but growing number of male caregivers who are responding to the needs of the extended family. While these men are still few in number, the strength of gendered ideologies of female care means that this group of men is socially, if not statistically significant. Men continue to be considered caregivers of last resort, but their care will close a small but growing gap that threatens to undermine kin-based networks of care in Lesotho and across the region. The adaptation of gender roles reinforces the strength and resilience of kinship networks even when working against deeply entrenched ideas about gendered division of domestic labor.

Paid caregiver motivation, work conditions, and falls among senior clients.

Science.gov (United States)

Lindquist, Lee A; Tam, Karen; Friesema, Elisha; Martin, Gary J

2012-01-01

The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; pmotivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Anger and Depression Management: Psychoeducational Skill Training Interventions for Women Caregivers of a Relative with Dementia

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Coon, David W.; Thompson, Larry; Steffen, Ann; Sorocco, Kristen; Gallagher-Thompson, Dolores

2003-01-01

Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a…

Caregiver psychoeducation for schizophrenia: is gender important?

LENUS (Irish Health Repository)

McWilliams, Stephen

2007-07-01

Females care for individuals with chronic illness more commonly than males and have different attitudes to illness. Additionally, they experience greater burden and reduced quality of life, when compared to their male counterparts. Since knowledge has been shown to be related to burden, we sought to determine whether there were gender differences in knowledge acquisition during a six-week caregiver psychoeducation programme (CPP).

The lived experience of caregivers of persons with heart failure: A phenomenological study.

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Petruzzo, Antonio; Paturzo, Marco; Naletto, Monica; Cohen, Marlene Z; Alvaro, Rosaria; Vellone, Ercole

2017-10-01

Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. To describe the lived experience of the caregivers of HF patients. A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Depressive symptoms in older female carers of adults with intellectual disabilities.

Science.gov (United States)

Chou, Y C; Pu, C-Y; Fu, L-Y; Kröger, T

2010-12-01

This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID). In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers. Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms. The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group. © 2010 The Authors. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd.

Stress and depression in informal caregivers of patients with bipolar affective disorder

Directory of Open Access Journals (Sweden)

Ximena Palacios-Espinosa

2009-10-01

Full Text Available This study aims to establish the stress and depression´s prevalence in informal primary caregivers of patients with bipolar affective disorder of the Clínica de Nuestra Señora de la Paz (Bogotá, Colombia. The sample consisted of 40 informal primary caregivers who were tested by several tools: a survey filter, a sociodemographic record, the Beck Depression Inventory (BDI and the Daily Stress Questionnaire. Results indicate that there is much more presence of depression than of daily stress in the sample.

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

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

2015-09-01

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

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

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

2015-05-01

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

Being concerned: caregiving for Taiwanese mothers of a child with cerebral palsy.

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Huang, Yu-Ping; Kellett, Ursula; St John, Winsome

2012-01-01

This article explores the Chinese social context and provides insight into Taiwanese mothers' challenging experiences when a disabled child is born into their families. International research indicates that barriers to maternal caregiving for a disabled child revolve around challenging relationships. Giving birth to a disabled child creates a huge challenge for mothers in Chinese society. Data were collected using in-depth interviews and journaling methods. A hermeneutic phenomenological approach, informed by the philosophical world views of Heidegger and Gadamer, provided theoretical guidance in revealing and interpreting mothers' experiences. Interviews were carried out with a purposeful sample of 15 mothers who were primary caregivers for a child aged between 0-18 years who was diagnosed with cerebral palsy and used Mandarin or Taiwanese as their primary language. Shared meanings revealed four modes of being concerned: (1) experiencing burden as a sole primary caregiver; (2) managing the challenges by balancing demands; (3) being marginalised by others; and (4) encountering limited or no professional support. Taiwanese mothers face the strain of managing barriers to caregiving in contexts in which their children are not supported or acknowledged as being important contributors to family and Chinese society at large. This study highlights how the family can be important to caregiving mothers in traditional Chinese family life. Poor support and dynamics will emerge when family members regard disability as a loss of face or a stigma. By learning from Taiwanese mothers who accommodate barriers to caregiving on a daily basis, nurses can seize the impetus to explore ways of reconceptualising nursing practice with families and people with disabilities. The aim is to explore ways that will ultimately align intentions and caring processes and foster coping and positive reward in caring, thereby creating a context that is stress reducing and therapeutic. © 2011 Blackwell

Female cancer patients and caregivers: experiences in the workplace.

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Feldman, F L

1986-01-01

Working women who have a cancer history, or who have some responsibility for the care of relatives with cancer, often face a cluster of attitudes and behaviors in their employers and co-workers to which individuals touched by other kinds of illness are not exposed. Patients and caregivers may find that others in the work environment are compassionate and helpful in many ways, but may also encounter considerable hostility and fear expressed verbally or as shunning or other attitudinal problems in the worksite. They may also be targets of overt or covert discrimination. These problems are explored using data from three recent studies on workplace experiences of white collar and blue collar workers who had recovered from cancer, and of former pediatric cancer patients.

The Kusamala Program for primary caregivers of children 6-59 months of age hospitalized with severe acute malnutrition in Malawi: study protocol for a cluster-randomized controlled trial

NARCIS (Netherlands)

Daniel, Allison I.; van den Heuvel, Meta; Voskuijl, Wieger P.; Gladstone, Melissa; Bwanali, Mike; Potani, Isabel; Bourdon, Celine; Njirammadzi, Jenala; Bandsma, Robert H. J.

2017-01-01

Background: Severe acute malnutrition (SAM) is associated with high mortality rates and impairments in growth and development in children that do survive. There are complex nutritional, health, and behavioural risk factors involving severely malnourished children and their primary caregivers,

Predictors of caregiving satisfaction in informal caregivers of people with dementia

DEFF Research Database (Denmark)

de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana

2015-01-01

Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...

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

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

2017-01-01

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

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

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

2017-12-01

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

The association between early generative concern and caregiving with friends from early to middle adolescence.

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Lawford, Heather L; Doyle, Anna-Beth; Markiewicz, Dorothy

2013-12-01

Generativity, defined as concern for future generations, is theorized to become a priority in midlife, preceded by a stage in which intimacy is the central issue. Recent research, however, has found evidence of generativity even in adolescence. This longitudinal study explored the associations between caregiving in friendships, closely related to intimacy, and early generative concern in a young adolescent sample. Given the importance of close friendships in adolescence, it was hypothesized that responsive caregiving in early adolescent friendships would predict later generative concern. Approximately 140 adolescents (56 % female, aged 14 at Time 1) completed questionnaires regarding generative concern and responsive caregiving with friends yearly across 2 years. Structural equation modeling revealed that caregiving predicted generative concern 1 year later but generative concern did not predict later caregiving. These results suggest that caregiving in close friendships plays an important role in the development of adolescents' motivation to contribute to future generations.

Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.

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Geng, Dan; Ou, RuWei; Miao, XiaoHui; Zhao, LiHong; Wei, QianQian; Chen, XuePing; Liang, Yan; Shang, HuiFang; Yang, Rong

2017-10-01

This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients

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

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

2018-04-01

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

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

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Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care.

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Mackinnon, Christopher J

2009-12-01

Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives. Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship. The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex. The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

Caregiver Confidence: Does It Predict Changes in Disability among Elderly Home Care Recipients?

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Li, Lydia W.; McLaughlin, Sara J.

2012-01-01

Purpose of the study: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional…

Assessment of Depression in Dementia Patients: Association of Caregiver Mood with Depression Ratings.

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Teri, Linda; Truax, Paula

1994-01-01

Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…

The Positive and Negative Experiences of Caregiving for Siblings of Young People with First Episode Psychosis

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Bowman, Siann; Alvarez-Jimenez, Mario; Wade, Darryl; Howie, Linsey; McGorry, Patrick

2017-01-01

Background: The impact of first episode psychosis (FEP) upon parents’ experience of caregiving has been well-documented. However, the determinants and nature of this remain poorly understood in siblings. It is hypothesized that siblings of young people with FEP are also impacted by caregiving and burden. This study aimed to characterize the experience of caregiving for siblings of young people with FEP. Method: Survey methodology was used to explore the experience of 157 siblings in the first 18 months of their brother or sister’s treatment for FEP. Participants reported on their appraisal of the negative and positive aspects of caregiving as measured by the Experience of Caregiving Inventory (ECI). Descriptive statistics were used to establish the results for the total sample as well as for gender and birth order differences. A series of multivariate regression analyses were conducted to determine the relationships between illness characteristics and siblings’ experience of caregiving. Results: Older brothers reported the lowest scores for negative experiences in caregiving and younger sisters reported the highest. Negative experiences in caregiving resulted in less warmth within the sibling relationship and impacted negatively upon quality of life. When the young person with FEP had attempted suicide and/or been physically violent, siblings experienced more caregiver burden. Multivariate analysis showed that female gender was a significant factor in explaining the impact of illness related variables on the experience of caregiving. Conclusion: Suicide attempts and a history of violence resulted in higher caregiving burden for siblings regardless of whether they lived with the young person experiencing FEP or not. Female siblings are at higher risk of negative experiences from caregiving resulting in a reduced quality of life and a changed sibling relationship. Suicide attempts and violence are indicators for intensive case management to improve outcomes for

The Positive and Negative Experiences of Caregiving for Siblings of Young People with First Episode Psychosis

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Siann Bowman

2017-05-01

Full Text Available Background: The impact of first episode psychosis (FEP upon parents’ experience of caregiving has been well-documented. However, the determinants and nature of this remain poorly understood in siblings. It is hypothesized that siblings of young people with FEP are also impacted by caregiving and burden. This study aimed to characterize the experience of caregiving for siblings of young people with FEP.Method: Survey methodology was used to explore the experience of 157 siblings in the first 18 months of their brother or sister’s treatment for FEP. Participants reported on their appraisal of the negative and positive aspects of caregiving as measured by the Experience of Caregiving Inventory (ECI. Descriptive statistics were used to establish the results for the total sample as well as for gender and birth order differences. A series of multivariate regression analyses were conducted to determine the relationships between illness characteristics and siblings’ experience of caregiving.Results: Older brothers reported the lowest scores for negative experiences in caregiving and younger sisters reported the highest. Negative experiences in caregiving resulted in less warmth within the sibling relationship and impacted negatively upon quality of life. When the young person with FEP had attempted suicide and/or been physically violent, siblings experienced more caregiver burden. Multivariate analysis showed that female gender was a significant factor in explaining the impact of illness related variables on the experience of caregiving.Conclusion: Suicide attempts and a history of violence resulted in higher caregiving burden for siblings regardless of whether they lived with the young person experiencing FEP or not. Female siblings are at higher risk of negative experiences from caregiving resulting in a reduced quality of life and a changed sibling relationship. Suicide attempts and violence are indicators for intensive case management to

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

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

2017-02-01

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

Colorectal cancer patients' preferences for type of caregiver during survivorship care.

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Wieldraaijer, T; Duineveld, L A M; Donkervoort, S C; Busschers, W B; van Weert, H C P M; Wind, J

2018-03-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to contact for symptoms during survivorship care, (2) what patient factors are associated with a preferred caregiver, and (3) whether the type of symptom is associated with a preferred caregiver. A cross-sectional study of CRC survivors at different time points. For 14 different symptoms, patients reported if they would consult a caregiver, and who they would contact if so. Patient and disease characteristics were retrieved from hospital and general practice records. Two hundred and sixty patients participated (response rate 54%) of whom the average age was 67, 54% were male. The median time after surgery was seven months (range 0-60 months). Patients were divided fairly evenly between tumour stages 1-3, 33% had received chemotherapy. Men, patients older than 65 years, and patients with chronic comorbid conditions preferred to consult their general practitioner (GP). Women, patients with stage 3 disease, and patients that had received chemotherapy preferred to consult their secondary care provider. For all symptoms, patients were more likely to consult their GP, except for (1) rectal blood loss, (2) weight loss, and (3) fear that cancer had recurred, in which case they would consult both their primary and secondary care providers. Patients appreciated all caregivers involved in survivorship care highly; with 8 out of 10 points. CRC survivors frequently consult their GP in the current situation, and for symptoms that could alarm them to a possible recurrent disease consult both their GP and secondary care provider. Patient and tumour characteristics influence patients' preferred caregiver.

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

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Karina Javalkar

2017-05-01

Full Text Available Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5, with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047, a diagnosis of attention-deficit/hyperactivity disorder (ADHD in addition to the primary medical condition (β = 0.216, p = 0.008, frequent visits with a primary care provider (PCP (β = 0.209, p = 0.026 and emergency room (ER visits (β = 0.197, p = 0.038, and lower child self-efficacy (β = −0.241, p = 0.041 were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

Nurses negotiating professional-familial care boundaries: striving for balance within double duty caregiving.

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Ward-Griffin, Catherine; Brown, Judith Belle; St-Amant, Oona; Sutherland, Nisha; Martin-Matthews, Anne; Keefe, Janice; Kerr, Mickey

2015-02-01

The purpose of this sequential, two-phase mixed-methods study was to examine the health of male and female nurses who provided care to older relatives (i.e., double duty caregivers). We explored the experiences of 32 double duty caregivers, which led to the development of an emergent grounded theory, Negotiating Professional-Familial Care Boundaries with two broad dialectical processes: professionalizing familial care and striving for balance. This article examines striving for balance, which is the process that responds to familial care expectations in the midst of available resources and reflects the health experiences of double duty caregivers. Two subprocesses of striving for balance, reaping the benefits and taking a toll, are presented in three composite vignettes, each representing specific double duty caregiving (DDC) prototypes (making it work, working to manage, living on the edge). This emergent theory extends current thinking of family caregiving that will inform the development and refinement of practices and policies relevant to DDC. © The Author(s) 2014.

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

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

2016-09-23

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

Orphan/vulnerable child caregiving moderates the association between women's autonomy and their BMI in three African countries.

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Kanamori, Mariano; Carter-Pokras, Olivia; Madhavan, Sangeetha; Feldman, Robert; He, Xin; Lee, Sunmin

2014-01-01

Enhancement of women's autonomy is a key factor for improving women's health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers' nutrition is fundamental. We investigated the association between married women's autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used the data from Demographic Health Surveys collected during 2006-2007 from 20- to 49-year-old women in Namibia (n = 2633), Swaziland (n = 1395), and Zambia (n = 2920). Analyses included logistic regression, Sobel, and Goodman tests. Our results indicated that women's educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers' BMI in Zambia (Z = 2.13, p value = 0.03). We concluded that depending on each country's contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia education has an effect on women's overweight status only among women who are caring for a child.

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis.

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Joling, Karlijn J; Windle, Gill; Dröes, Rose-Marie; Meiland, Franka; van Hout, Hein P J; MacNeil Vroomen, Janet; van de Ven, Peter M; Moniz-Cook, Esmé; Woods, Bob

2016-01-01

Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services. © 2016 The Author(s) Published by S. Karger AG, Basel.

Primary spontaneous pneumothorax in menstruating females has high recurrence

Science.gov (United States)

Mehta, Christopher K.; Stanifer, Bryan P.; Fore-Kosterski, Susan; Gillespie, Colin; Yeldandi, Anjana; Meyerson, Shari; Odell, David D.; DeCamp, Malcolm M.; Bharat, Ankit

2016-01-01

Background Primary spontaneous pneumothorax (PSP) is treated based on studies that have predominantly consisted of tall male subjects. Here we determined recurrence of PSP in average-statured menstruating women and studied prevalence of catamenial pneumothorax (CP) in this population. Methods Males and menstruating females, aged 18-55 years, without underlying lung disease or substance abuse were retrospectively studied between 2009-2015. A chest pathologist reviewed all specimens for thoracic endometriosis. Kaplan-Meier curves were constructed to determine recurrence. Results The median age of females (n=33) and males (n=183) was 33.4 and 31.6 years, respectively. In females, nine (27%) had left-sided and 24 (73%) had right-sided PSP, treated with tube thoracostomy. Recurrence occurred in 21 (64%) females with median follow up of 14 months and was treated with thoracoscopic pleurodesis. Right PSP had higher recurrence (70%) compared to left (56%, p=0.02). Four females (12%) presented with recurrent tension pneumothorax within six months. Eight (24%) patients had PSP within 72 hours of menses, meeting clinical criteria of CP. All these were placed on hormonal suppression after initial episode but went on to develop recurrence that was treated with pleurodesis. However, classic endometrial glands were not found in any biopsy specimens obtained during the thoracoscopy. In contrast to female subjects, only 8 (4.4%) average-statured males had recurrence (p<0.001) with a median follow up of 16 months. Conclusions PSP in healthy average-statured menstruating women has high recurrence compared to male counterparts. CP is a clinical diagnosis and often recurs despite hormonal suppression therapy. PMID:27345097

Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration.

Directory of Open Access Journals (Sweden)

Rishma Gohil

Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.

Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis

NARCIS (Netherlands)

Suikers, Esther; Tissing, Wim J.E.; Brinksma, Aeltsje; Roodbol, Petrie F.; Kamps, Willem A.; Stewart, Roy E.; Sanderman, Robbert; Fleer, Joke

2015-01-01

Objective This study investigated the course, predictors, and impact of caregiving stress on the functioning of primary caregivers of children with cancer during the first year after a child's cancer diagnosis. Methods Primary caregivers (N = 95, 100% mother, 86% response rate) of consecutive newly

Effects of Auricular Acupressure Therapy on Primary Dysmenorrhea for Female High School Students in South Korea.

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Cha, Nam Hyun; Sok, Sohyune R

2016-09-01

To examine the effect of auricular acupressure therapy on primary dysmenorrhea among female high school students in South Korea. A randomized controlled trial was employed. The study sample consisted of 91 female high school students, with 45 participants in the experimental group and 46 in the control group in two regions of South Korea. The average age of the participants was 16.7 years, and the average age of menarche was 12.2 years. Auricular acupressure therapy including an auricular acupressure needle on skin paper tape was applied on an ear for 3 days during periods of extreme primary dysmenorrhea. The acupoint names were Jagung, Sinmun, Gyogam, and Naebunbi. For the placebo control group, only the skin paper tape without an auricular acupressure needle was applied on the same acupoints. Measures used were the Menstrual Distress Questionnaire to assess primary dysmenorrhea, and the visual analog scale to assess abdominal and back pain of participants. There were significant differences on abdominal pain (t = 24.594, p dysmenorrhea (t = 32.187, p dysmenorrhea of female high school students in South Korea. Auricular acupressure therapy was an effective intervention for alleviating abdominal pain, back pain, and primary dysmenorrhea of female high school students in South Korea. For feasibility of the auricular acupressure therapy in practice, it is needed to train and learn the exact positions of acupoints in ear. Health providers should consider providing auricular acupressure therapy as an alternative method for reducing abdominal and back pain, and primary dysmenorrhea in female high school students in South Korea. © 2016 Sigma Theta Tau International.

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

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Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2016-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR’s from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child’s autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child’s Individualized Education Program (IEP) and evaluation of caregiver satisfaction with the IEP. PMID:25643472

HIV, STD, and hepatitis risk to primary female partners of men being released from prison.

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Grinstead, Olga A; Faigeles, Bonnie; Comfort, Megan; Seal, David; Nealey-Moore, Jill; Belcher, Lisa; Morrow, Kathleen

2005-01-01

Incarcerated men in the US are at increased risk for HIV, STDs and hepatitis, and many men leaving prison have unprotected sex with a primary female partner immediately following release from prison. This paper addresses risk to the primary female partners of men being released from prison (N = 106) by examining the prevalence of men's concurrent unprotected sex with other partners or needle sharing prior to and following release from prison (concurrent risk). Rates of concurrent risk were 46% prior to incarceration, 18% one month post release, and 24% three months post release. Multivariate analysis showed concurrent risk was significantly associated with having a female partner who had one or more HIV/STD risk factors and having a history of injection drug use. Findings demonstrate need for prevention programs for incarcerated men and their female partners.

Help for the Caregiver

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... patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain ... be caused by the cancer or the treatments. What the caregiver is expected to do Caregivers report that they ...

Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

Science.gov (United States)

Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-01-01

Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.

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Epstein-Lubow, Gary P; Beevers, Christopher G; Bishop, Duane S; Miller, Ivan W

2009-06-01

To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke. Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families. Neurology inpatient service of a large urban hospital. Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white. Not applicable. Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index). Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning. Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.

Knowledge and perception of mothers and caregivers on childhood ...

African Journals Online (AJOL)

lmboera

malaria, acquired immunodeficiency syndrome (AIDS) and tuberculosis (TB) combined ... mothers/caregivers on childhood diarrhoea focusing on three main aspects viz. .... no formal education while 37 (53%) and 11 (15.7%) had primary and ...

Experience of Dementia-related Anxiety in Middle-aged Female Caregivers for Family Members with Dementia: A Phenomenological Study

Directory of Open Access Journals (Sweden)

Jeong Sun Kim, RN, PhD

2016-06-01

Conclusions: The study provides the essential structure of the experience on dementia-related anxiety that caregivers of a family member with dementia have. The findings could help healthcare providers and researchers have better understanding of dementia-related anxiety and give more attention to the caregivers to relieve their anxiety.

CAREGIVERS' KNOWLEDGE AND HOME MANAGEMENT OF FEVER IN CHILDREN.

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Koech, P J; Onyango, F E; Jowi, C

2014-05-01

Fever is one of the most common complaints presented to the Paediatric Emergency Unit (PEU). It is a sign that there is an underlying pathologic process, the most common being infection. Many childhood illnesses are accompanied by fever, many of which are treated at home prior to presentation to hospital. Most febrile episodes are benign. Caregivers are the primary contacts to children with fever. Adequate caregivers' knowledge and proper management of fever at home leads to better management of febrile illnesses and reduces complications. To determine the caregivers' knowledge and practices regarding fever in children. A cross-sectional study. Peadiatric Emergency Unit at Kenyatta National Hospital (KNH) SUBJECTS: Two hundred and fifty caregivers of children under 12 years presenting with fever in August to October 2011 to the PEU. Three quarters of the caregivers' defined fever correctly. Their knowledge on the normal body was at 47.6%. Infection was cited as the leading cause of fever (95.2%). Brain damage (77.6%) and dehydration (65.6%) were viewed as the most common complication. Fever was treated at home by 97.2% of caregivers, most of them used medication. Fever was defined correctly by 75.2% of the study participants and a majority of them used touch to detect fever. Fever was managed at home with medications. Public Health Education should be implemented in order to enlighten caregivers on fever and advocate for the use of a clinical thermometer to monitor fever at home.

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

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

2015-01-01

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

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

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

2017-01-01

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

Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

Science.gov (United States)

Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-09-01

In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses.

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Schneider, Monica; Steele, Rose; Cadell, Susan; Hemsworth, David

2011-06-01

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately. Copyright © 2011 Elsevier Inc. All rights reserved.

The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

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Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

2018-01-01

To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 John

A pilot study of Trabajadora de salud, a lay health worker intervention for Latinas/os with traumatic brain injuries and their caregivers.

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Linton, Kristen F; Kim, Bum Jung

2018-01-01

Latinas/os with traumatic brain injuries (TBIs) and their caregivers experience worse outcomes than others. The study aimed to assess the acceptability and promise of Trabajadora de Salud on the functional abilities, hospital readmission, rehabilitation, employment, depression, somatic symptoms, and caregiver burden among Latinas/os with TBIs and their caregivers. A pre-posttest experimental pilot study was conducted. A total of eight Latina/o adult patients (50% female) with mild or moderate TBI and six of their caregivers (66.7% female) were randomized to receive Trabajadora de Salud or a telephone only control group. Trabajadora de Salud, a three-month, in-home intervention administered by bilingual lay health workers, focused on: 1) providing empathy and validation of TBI symptoms, 2) addressing basic needs, 3) goal setting, and 4) improving communication with healthcare providers. Trabajadora de Salud was widely accepted by patients, caregivers, and health professionals. The functional, depression, and somatic symptoms of the patients as well as the somatic symptoms and caregiver burden of the caregivers improved more for participants in the intervention group than the control group. Trabajadora de Salud demonstrated promise in improving outcomes of Latinas/os with TBIs and their caregivers and should be further studied. Copyright © 2017 Elsevier Inc. All rights reserved.

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

DEFF Research Database (Denmark)

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

2016-01-01

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

Changes in perceived filial obligation norms among coresident family caregivers in Japan.

Science.gov (United States)

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-10-01

Japan introduced a nationwide long-term care insurance (LTCI) system in 2000, making long-term care (LTC) a right for older adults regardless of income and family availability. To shed light on its implications for family caregiving, we investigated perceived filial obligation norms among coresident primary family caregivers before and after the policy change. Descriptive and multiple regression analyses were conducted to examine changes in perceived filial obligation norms and its subdimensions (financial, physical, and emotional support), using 2-wave panel survey data of coresident primary family caregivers (N = 611) in 1 city. The baseline survey was conducted in 1999, and a follow-up survey 2 years later. On average, perceived filial obligation norms declined (p family caregivers. In particular, physical support, which Japan's LTC reform targeted, declined significantly among daughters and daughters-in-law (p perceived filial obligation norms after the policy introduction than sons and daughters (p < .01 and p < .05, respectively), controlling for the baseline filial obligation and situational factors. Our research indicates declining roles of daughters-in-law in elder care during Japan's LTCI system implementation period. Further international efforts are needed to design and implement longitudinal studies that help promote understanding of the interplay among national LTC policies, social changes, and caregiving norms and behaviors. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America.

Psychometrics of the Zarit Burden Interview in Caregivers of Patients With Heart Failure.

Science.gov (United States)

Al-Rawashdeh, Sami Y; Lennie, Terry A; Chung, Misook L

Identification of family caregivers who are burdened by the caregiving experience is vital to prevention of poor outcomes associated with caregiving. The Zarit Burden Interview (ZBI), a well-known measure of caregiving burden in caregivers of patients with dementia, has been used without being validated in caregivers of patients with heart failure (HF). The purpose of this study is to examine the reliability and validity of the ZBI in caregivers of patients with HF. A total of 124 primary caregivers of patients with HF completed survey questionnaires. Caregiving burden was measured by the ZBI. Reliability was examined using Cronbach's α and item-total/item-item correlations. Convergent validity was examined using correlations with the Oberst Caregiving Burden Scale. Construct validity was demonstrated by exploratory factor analysis and known hypothesis testing (ie, the hypothesis of the association between caregiving burden and depressive symptoms). Cronbach's α for the ZBI was .921. The ZBI had good item-total (r = 0.395-0.764) and item-item (mean r = 0.365) correlations. Significant correlations between the ZBI and the Oberst Caregiving Burden Scale (r = 0.466 for the caregiving time subscale and 0.583 for the caregiving task difficulty subscale; P < .001 for both) supported convergent validity. Four factors were identified (ie, consequences of caregiving, patient's dependence, exhaustion with caregiving and uncertainty, and guilt and fear for the patient's future) using factor analysis, which are consistent with previous studies. Caregivers with high burden scores had significantly higher depressive symptoms than did caregivers with lower burden scores (7.0 ± 6.8 vs 3.1 ± 4.3; P < .01). The findings provide evidence that the ZBI is a reliable and valid measure for assessing burden in caregivers of patients with HF.

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

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

2012-01-01

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

Problem-solving intervention for caregivers of children with mental health problems.

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Gerkensmeyer, Janis E; Johnson, Cynthia S; Scott, Eric L; Oruche, Ukamaka M; Lindsey, Laura M; Austin, Joan K; Perkins, Susan M

2013-06-01

Building Our Solutions and Connections (BOSC) focused on enhancing problem-solving skills (PSS) of primary caregivers of children with mental health problems. Aims were determining feasibility, acceptability, and effect size (ES) estimates for depression, burden, personal control, and PSS. Caregivers were randomized to BOSC (n=30) or wait-list control (WLC) groups (n=31). Data were collected at baseline, post-intervention, and 3 and 6 months post-intervention. Three-months post-intervention, ES for burden and personal control were .07 and .08, respectively. ES for depressed caregivers for burden and personal control were 0.14 and 0.19, respectively. Evidence indicates that the intervention had desired effects. Published by Elsevier Inc.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

Science.gov (United States)

Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Caregiver Soothing Behaviors After Immunization and Infant Attachment: A Longitudinal Analysis.

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Hillgrove-Stuart, Jessica; Pillai Riddell, Rebecca; Flora, David B; Greenberg, Saul; Garfield, Hartley

2015-01-01

There were 2 primary objectives to the current study: (1) to relate caregiver behavior trajectories across immunization appointments over the first year of life to subsequent infant attachment and (2) to relate caregiver behavior trajectories within each immunization appointment over the first year of life to subsequent infant attachment. A subsample of 130 caregivers and their infants were recruited from a sample of 760 caregivers who were part of an ongoing longitudinal cohort that videotaped infants' 2-, 4-, 6-, and 12-month immunization appointments. This subsample of caregivers and their infants (n = 130) were invited to participate in an assessment of attachment when infants were between 12 and 18 months of age at the local children's hospital. Caregiver proximal soothing behaviors were the only caregiver behaviors postimmunization that were related to subsequent infant attachment. Higher frequencies of caregiver proximal soothing at 12 months were related to infants' organized attachment, whereas steeper decreases in proximal soothing across the first year were associated with disorganized infant attachment. In addition, when caregivers engaged in proximal soothing for longer after their 12 month olds' immunizations, these infants were more likely to be secure or organized in their attachment. These results provide empirical support for the ecological validity of studying infant attachment in a pediatric pain context. The pediatric "well-baby" visit may provide a potential opportunity to feasibly integrate brief infant mental health screening and intervention.

Psychosocial Challenges Associated with Caregiving in the Context of Pediatric HIV in Rural Eastern Cape

Directory of Open Access Journals (Sweden)

Antonio G. Lentoor

2017-06-01

Full Text Available BackgroundWhile survival among human immunodeficiency virus (HIV-infected children has increased due to combination antiretroviral therapy, many children remain vulnerable to the adverse effects of poverty and family disruptions as a result of the loss of one or both biological parents to acquired immunodeficiency syndrome. The aim of this qualitative study was to develop an understanding of the psychosocial challenges experienced by caregivers caring for a child with perinatally acquired HIV.MethodA series of interviews were conducted with 44 HIV-positive and -negative primary caregivers of HIV+ children. Data were analyzed through interpretative phenomenological analysis using NVivo8 software.FindingsThe findings suggest that caregiving is compromised by inadequate, financial resources and single-headed households where mainly grandparents assume the role of primary caregivers of HIV+ children. HIV remains a stigmatized illness that weakens support networks, as well as timeous and free accessibility to healthcare. This has a negative impact on the mental health of caregivers, with the majority of women in the study displaying symptoms of depression.ConclusionThe findings highlight the contextual challenges of caregiving in the presence of HIV, which impacts negatively on social ecology of the families. The need for interventions to enhance resilience and coping in families confronted with HIV is indicated.

Attachment style dimensions can affect prolonged grief risk in caregivers of terminally ill patients with cancer.

Science.gov (United States)

Lai, Carlo; Luciani, Massimiliano; Galli, Federico; Morelli, Emanuela; Cappelluti, Roberta; Penco, Italo; Aceto, Paola; Lombardo, Luigi

2015-12-01

The aim of the present study was to evaluate the predictive role of attachment dimensions on the risk of prolonged grief. Sixty caregivers of 51 terminally ill patients with cancer who had been admitted in a hospice were selected. Caregivers were interviewed using Attachment Scale Questionnaire, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, and Prolonged Grief Disorder 12 (PG-12). The consort caregivers showed higher PG-12 level compared to the sibling caregivers. Anxiety, depression, need for approval, and preoccupation with relationships levels were significantly correlated with PG-12 scores. Female gender, high levels of depression, and preoccupation with relationships significantly predicted higher levels of prolonged grief risk. © The Author(s) 2014.

Risk factors for burnout among caregivers working in nursing homes.

Science.gov (United States)

Kandelman, Nadia; Mazars, Thierry; Levy, Antonin

2018-01-01

(i) To assess the level of burnout in nursing home caregivers within a unique healthcare network in France and (ii) to evaluate potential risk factors in this population. Burnout syndrome occurs frequently among nursing home caregivers and has strong detrimental effects on the quality of health care for residents. We used an observational survey to study burnout in nursing home caregivers. The survey was used to quantify burnout level (Maslach Burnout Inventory) and potential risk factors and was implemented from October 2013-April 2014. A logistic regression was used to explore the association between burnout and its risk factors. Three hundred and sixty questionnaires were delivered to caregivers in 14 nursing homes within a unique healthcare network. The response rate was 37% (132/360), and 124/132 (94%) surveys were analysed. Caregiver burnout rate was 40% (49/124). Median age was 41 years (range, 20-70) and most caregivers were female. The most common profession (n = 54; 44%) was nurse caregiver and 90% (n = 112) had an antecedent of bullying by a resident. Risk factors identified were as follows: the presence of institutional protocols (death announcement [OR: 3.7] and pain assessment [OR: 2.8]), working in a profit-making establishment (OR: 2.6) and the antecedent of bullying by a resident (OR: 6.2). Factors most negatively associated with burnout included: practising pastimes (OR: 0.4) and working as a nurse (OR: 0.3). The only significant risk factor in the multivariate analysis was the antecedent of bullying by a resident (OR: 5.3). Several specific risk factors for burnout in nursing home caregivers were identified. In high-risk populations of healthcare professionals, screening and management of risk factors is crucial for preventing burnout. © 2017 John Wiley & Sons Ltd.

Predictors of female worker attitudes towards menstruation and the provision of help to institutionalized women with intellectual disabilities in Taiwan.

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Chou, Yueh-Ching; Lu, Zxy-yann J; Pu, Cheng-yun; Lan, Chung-Fu

2008-08-01

No previous research has examined the importance of both individual and environmental factors for predicting caregivers' menstrual attitudes. To explore the predictors of female caregivers' attitudes towards menstruation and the help they give to women with intellectual disabilities, we conducted a cross-sectional questionnaire survey which was completed by 725 female workers from 12 institutions in Taiwan. The Menstrual Attitudes Questionnaire (MAQ) and a structured questionnaire were used. Logistic regression analysis revealed that individual characteristics such as age and education were significantly associated with menstrual attitudes of female caregivers working with institutionalized women with intellectual disabilities. Furthermore, the environmental context, such as the frequency of discussions with colleagues, training in menstrual management care and the level of difficulty when giving help in menstruation management, was important for improving caregivers' menstrual attitudes. This study contributes to the existing literature by determining both individual and environmental predictors of caregivers' menstrual attitudes.

A STUDY ON CARDIOVASCULAR AUTONOMIC FUNCTIONS IN CAREGIVERS OF STROKE PATIENTS

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Ghouse Mubarak

2017-08-01

Full Text Available BACKGROUND Stroke (cerebrovascular accident is an important cause of disability in countries like India and longterm care of these bedridden patients is usually undertaken by the family members. A caregiver is a person who takes responsibility for those who cannot completely care for themselves. Taking care of a chronically ill member in the family usually causes stress to the caregiver causing disturbances in the autonomic function. Thus, the present study is undertaken to find out the effect of longterm caregiving on cardiovascular autonomic functions in a caregiver. MATERIALS AND METHODS 57 caregivers of post-stroke bedridden patients, both male and female, were included in this longitudinal study. Parasympathetic activity was assessed by observing the heart rate changes to immediate standing from lying down position, heart rate changes during deep breathing and heart rate changes during Valsalva manoeuvre. Sympathetic activity was assessed by observing blood pressure changes on immediate standing from lying down position and blood pressure changes during sustained hand grip. RESULTS The results of the present study showed statistically significant decrease in Valsalva ratio, decrease in the heart rate following deep breathing and statistically significant increase in systolic blood pressure in response to immediate standing suggestive of autonomic imbalance. CONCLUSION Our findings suggest that longterm caregiving is accompanied by dysfunction of the cardiac autonomic nervous system, and these individuals are more prone to autonomic neuropathy.

A Research Study on Secure Attachment Using the Primary Caregiving Approach

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Ebbeck, Marjory; Phoon, Dora Mei Yong; Tan-Chong, Elizabeth Chai Kim; Tan, Marilyn Ai Bee; Goh, Mandy Lian Mui

2015-01-01

A child's positive sense of well-being is central to their overall growth and development. With an increasing number of mothers in the workforce, many infants and toddlers spend much time in child care services. Hence it is crucial that caregivers provide a secure base for the child to develop secure attachment with educarers. Given multiple…

Spousal Caregiving for Partners With Dementia: A Deductive Literature Review Testing Calasanti's Gendered View of Care Work.

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Hong, Sung-Chull; Coogle, Constance L

2016-07-01

Spousal caregiving allows stressed couples to continue living in the community rather than seeking institutional solutions. Dr. Toni Calasanti has postulated that there are gender differences in the care work styles and coping strategies used by spousal caregivers dealing with dementia. While caregiving husbands tend to adopt task-oriented (masculine) approaches, caregiving wives are more likely to take an emotionally focused (feminine) orientation. These differences result in the need for varied interventions. Male caregivers tend toward a managerial approach, whereas female caregivers generally adopt a relational approach. This distinction was examined in the course of a literature review through the deductive process. It was determined that the core thesis of such a gender-based view of care work as a tiered entity threaded with masculinity/femininity remains quite plausible in contrast to models based on self-perceived gender identity of caregivers that require more exploration. Recommendations for future investigations are offered as new questions arise. © The Author(s) 2014.

Late-Stage Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Middle-State Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Early-Stage Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Family caregivers' attributions about care-recipient behaviour: does caregiver relationship satisfaction mediate the attribution-distress relationship?

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Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra

2011-09-01

The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.

Web-Based Tools for Educating Caregivers About Childhood Fever: A Randomized Controlled Trial.

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Hart, Lara; Nedadur, Rashmi; Reardon, Jaime; Sirizzotti, Natalie; Poonai, Caroline; Speechley, Kathy N; Loftus, Jay; Miller, Michael; Salvadori, Marina; Spadafora, Amanda; Poonai, Naveen

2016-10-04

Fever is a common reason for an emergency department visit and misconceptions abound. We assessed the effectiveness of an interactive Web-based module (WBM), read-only Web site (ROW), and written and verbal information (standard of care [SOC]) to educate caregivers about fever in their children. Caregivers in the emergency department were randomized to a WBM, ROW, or SOC. Primary outcome was the gain score on a novel questionnaire testing knowledge surrounding measurement and management of fever. Secondary outcome was caregiver satisfaction with the interventions. There were 77, 79, and 77 participants in the WBM, ROW, and SOC groups, respectively. With a maximum of 33 points, Web-based interventions were associated with a significant mean (SD) pretest to immediate posttest gain score of 3.5 (4.2) for WBM (P ROW > SOC (P Web-based interventions are associated with significant improvements in caregiver knowledge about fever and high caregiver satisfaction. These interventions should be used to educate caregivers pending the demonstration of improved patient-centered outcomes.

QOL in caregivers of Japanese patients with Prader-Willi syndrome with reference to age and genotype.

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Ihara, Hiroshi; Ogata, Hiroyuki; Sayama, Masayuki; Kato, Aya; Gito, Masao; Murakami, Nobuyuki; Kido, Yasuhiro; Nagai, Toshiro

2014-09-01

This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader-Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children (aged from 6 to 12 years) and 23 adolescents (aged from 13 to 19 years), including 6 children and 7 adolescents with maternal uniparental disomy (mUPD) and 16 children and 16 adolescents with deletion (DEL). The QOL of the primary family caregiver for each patient was assessed using the Japanese version of the WHOQOL-BREF. To examine the effect that age (children vs. adolescents) and genotype (DEL vs. mUPD) have on the QOL of caregivers, a two-way ANOVA was conducted, followed by the Bonferroni procedure to test the simple main effects. The two age groups and the two genotypes of PWS were used as independent variables and the total QOL of caregivers as a dependent variable. The two-way ANOVA (F(1, 41) = 6.98, P caregivers of DEL adolescents showed little difference from that with DEL children, but the QOL of caregivers for mUPD adolescents was shown to be lower than that with mUPD children along with that of caregivers with DEL adolescents. There is hence a growing tendency for the deterioration in the QOL of caregivers to manifest itself later in the patients' adolescence, found mainly with mUPD patients. © 2014 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc.

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

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

2017-01-01

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

Exploring the Link between Caregiver Affect and Adolescent Sexual Behavior: Does Neighborhood Disadvantage Matter?

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Gardner, Margo; Martin, Anne; Brooks-Gunn, Jeanne

2012-01-01

In a sample of urban youth (N = 1,070), we examined the links between primary caregiver affect (i.e., warmth and hostility) and two measures of sexual behavior in adolescence--early sexual initiation and sex with multiple partners. We also examined the extent to which neighborhood disadvantage moderated associations between caregiver affect and…

Caregivers of patients with cancer: anxiety, depression and distribution of dependency.

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Cipolletta, Sabrina; Shams, Malihe; Tonello, Fabio; Pruneddu, Alessandra

2013-01-01

Assisting a patient with cancer implies assuming a role that may fit in with the previous role of the person or that may contrast with it, thereby provoking suffering. This research explores if it is possible to identify different profiles of caregivers on the basis of different levels of anxiety and depression as well as on different ways of distributing one's own dependency. There were 50 Italian primary caregivers of patients with cancer who completed the Beck Anxiety Inventory, the Beck Depression Inventory-II, and Kelly's Dependency Grids. Cluster analysis was conducted on the indices derived from the three instruments. Three profiles were found on the basis of how the caregivers used their resources to give and to receive help. If there was congruence between the situation of giving help that the caregivers experienced and their personal role, then anxiety and depression decreased, otherwise, they increased. The implications of the balance/imbalance between the usual and the present role depended also on the typicality of the caregivers' experience, as related to their caring role. These results suggest the usefulness of planning different kinds of support for different experiences of caregiving. Copyright © 2011 John Wiley & Sons, Ltd.

The effects of caregiver and household HIV on child development: a community-based longitudinal study of young children.

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Sherr, L; Skeen, S; Hensels, I S; Tomlinson, M; Macedo, A

2016-11-01

Many studies that document child outcomes in the context of parental HIV - which has been established as a risk factor for child development - focus on older children/adolescents. Studies also concentrate on the status of the primary caregiver, not other household members who might be infected. This study examined the effects of caregiver and household HIV on child development (4-13 years) in South Africa and Malawi (2011-2014). Data were gathered from 989 children and their primary caregivers at baseline and repeated at 12-15 months follow-up (86.5% follow-up rate). Only caregivers of a single child and caregiver/child dyads without missing data were included, providing a sample of 808 dyads for analysis. Children were divided into three groups according to caregiver-reported HIV burden: having an HIV-positive primary caregiver (19.8%), having HIV in the household (14.2%) or no HIV (66%). The HIV burden was positively associated with an array of negative child outcomes, often mediated by caregiver depression levels. Family HIV burden at baseline affected child behavioural problems at follow-up indirectly through carer depression (B = 0.02; CI = 0.003, 0.06). Internalizing (B = 0.02; CI = 0.002, 0.05) and externalizing problems at follow-up (B = 0.01; CI = 0.0002, 0.03) were also indirectly affected by family HIV burden through caregiver depression. The data suggest that family HIV can affect child development, emphasizing the important role of depression in the pathway to such an effect. Community-based interventions directed at alleviating parental depression in the presence of HIV may help to interrupt the cycle of family HIV and adverse child outcomes. © 2016 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.

Family Caregiver Alliance

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... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... AiA18 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Studies show ...

Tacit definitions of informal caregiving.

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Wrubel, J; Richards, T A; Folkman, S; Acree, M C

2001-01-01

This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

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Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Feasibility of central meditation and imagery therapy for dementia caregivers.

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Jain, Felipe A; Nazarian, Nora; Lavretsky, Helen

2014-08-01

Family dementia caregivers are at high risk of depression and burnout. We assessed the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress because of caregiving responsibilities. Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality of life, and mindfulness. Changes over the study and 3 month follow-up were analyzed with non-parametric related samples tests. Correlations of feeling state changes from meditation diaries at 1 week were made with symptom changes post meditation training. Ten participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8 sessions, and turned in home practice logs of 90 ± 10% of the time. Anxiety, depression, and insomnia symptoms decreased, and mindfulness ratings improved with large effects (all p meditation practice was associated with subsequent home meditation practice, anxiety change at 8 weeks, and endpoint satisfaction with CMIT-C. Central Meditation and Imagery Therapy for Caregivers is a feasible intervention for dementia caregivers. Results suggest that this therapeutic technique can reduce symptoms of anxiety, depression, and insomnia, and increase levels of mindfulness. Early response to meditation practice predicted those with the greatest short-term benefits, and this may inform future studies of meditation. Larger controlled efficacy studies of CMIT-C for dementia caregivers are warranted. Copyright © 2014 John Wiley & Sons, Ltd.

Resilience in family caregivers of persons with acquired brain injury.

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Las Hayas, Carlota; López de Arroyabe, Elena; Calvete, Esther

2015-08-01

The authors' purpose was to develop the Questionnaire of Resilience in Caregivers of Acquired Brain Injury (QRC-ABI) and explore its psychometric properties The QRC-ABI was developed to measure the process of resilience, including resilient factors that, according to the literature, are the most relevant for caregivers. This is a cross-sectional study of Spanish primary caregivers of individuals with ABI. It included 237 caregivers (77.6% women and 21.1% men) who completed the QRC-ABI, the Posttraumatic Growth Inventory (Weiss & Berger, 2006), the World Health Organization Quality of Life-BREF (Skevington, Lotfy, O'Connell, & the WHOQOL Group, 2004) assessment, and the Positive Aspects of Caregiving (Tarlow et al., 2004) assessment. An item pool of 36 items was developed, from which 17 were finally selected based on a consensus among researchers and adequate symmetry indexes and kurtoses. Confirmatory factor analysis of the QRC-ABI confirmed a hierarchical solution in which 4 resilience dimensions were explained by a broader general resilience factor. The internal consistency of each scale was >.80. Convergent validity was supported through positive correlations of the QRC-ABI with quality of life, positive aspects of caregiving, and posttraumatic growth, and a negative correlation with perceived burden. The new QRC-ABI showed good reliability and validity. Our results are consistent with previous studies that have argued that resilient qualities are important for a healthy and positive adaptation to the challenging adversities faced by caregivers of individuals with ABI. Future interventions based on resilience should promote these factors in caregivers. (c) 2015 APA, all rights reserved).

Initial experiences of family caregivers of survivors of a traumatic brain injury

Directory of Open Access Journals (Sweden)

Mandi Broodryk

2015-08-01

Full Text Available Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI. Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI. Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI. Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

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

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

2010-04-01

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

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

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

2016-02-01

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

Primary urethral leiomyoma in a female patient: A case report and ...

African Journals Online (AJOL)

R. Sharma

www.ees.elsevier.com/afju · www.sciencedirect.com. Case report. Primary urethral leiomyoma in a female patient: A case report and review of the literature. R. Sharma. ∗. , S.K. Mitra, R.K. Dey, S. Basu, R.K. Das. Urology Department, R.G. Kar Medical College, Kolkata, India. Received 14 July 2014; received in revised form ...

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

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

2010-07-28

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

The Effects of a Family Support Program Including Respite Care on Parenting Stress and Family Quality of Life Perceived by Primary Caregivers of Children with Disabilities in Korea

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Sung, Minjung; Park, Jiyeon

2012-01-01

In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

Male caregivers of patients with breast and gynecologic cancer: experiences from caring for their spouses and partners.

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Lopez, Violeta; Copp, Gina; Molassiotis, Alexander

2012-01-01

There is considerable evidence demonstrating the negative effects of caregiving particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer. However, there is little work on male caregivers' subjective experience of caring for family members with cancer, and little is known on how caregivers experience the caring over time. The objective of the study was to explore male spouses'/partners' experience of caring for their wives/partners with breast and gynecologic cancer over a 1-year period. An exploratory longitudinal qualitative descriptive design using face-to-face interviews of 15 spouses/partners was used in this study. Content analysis of the transcribed data was conducted to extract significant categories and themes. Varying degrees of interrelated cognitive, physical, and psychological impact were experienced by caregivers that extended to 12 months. Gender-specific attitudes prevented male caregivers from supporting their own self. Male caregivers dealt with problems that arose in the caregiving congruent with their masculinity, such as minimizing disruptions, focusing on tasks, and keeping their own stress to themselves. Male caregivers as a separate group with their own needs have not received much attention in the cancer literature, and their concerns and challenges may differ from those of female caregivers. Male caregivers' concerns and challenges must be taken into consideration when planning appropriate interventions to support them in their caregiving role.

Caring for the caregivers: an investigation of factors related to well-being among parents caring for a child with Smith-Magenis syndrome.

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Foster, Rebecca H; Kozachek, Stephanie; Stern, Marilyn; Elsea, Sarah H

2010-04-01

Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.

Behavioral evidence of heterospecific bonding between the lamb and the human caregiver and mapping of associated brain network.

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Guesdon, Vanessa; Nowak, Raymond; Meurisse, Maryse; Boivin, Xavier; Cornilleau, Fabien; Chaillou, Elodie; Lévy, Frédéric

2016-09-01

While behavioral mechanisms of bonding between young mammals and humans have been explored, brain structures involved in the establishment of such processes are still unknown. The aim of the study was to identify brain regions activated by the presence of the caregiver. Since human positive interaction plays an important role in the bonding process, activation of specific brain structures by stroking was also examined. Twenty-four female lambs reared in groups of three were fed and stroked daily by a female caregiver between birth and 5-7 weeks of age. At 4 weeks, an isolation-reunion-separation test and a choice test revealed that lambs developed a strong bond with their caregiver. At 5-7 weeks of age, lambs were socially isolated for 90min. They either remained isolated or met their caregiver who stroked them, or not, at regular intervals over a 90-min period. Neuronal activation was investigated at the end of the period for maximum c-Fos expression. Reunion with the caregiver appeased similarly the lambs whether stroking was provided or not. Stroking did not activate a specific brain network compared to no stroking. In both cases, brain regions associated with olfactory, visual and tactile cue processing were activated in the presence of the caregiver, suggesting a multisensory process involved. In addition, activation of the oxytocinergic system in the hypothalamic paraventricular nucleus induced by the presence of the caregiver suggests similar neuroendocrine mechanisms involved in inter-conspecific and animal-human bonding. Copyright © 2016 Elsevier Ltd. All rights reserved.

Gendering Guilt among Dependent Family Members' Caregivers.

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Brea, Maria-Teresa; Albar, María-Jesús; Casado-Mejia, Rosa

2016-11-17

This study analyzes guilt among family caregivers of dependent patients, from a gender perspective. A qualitative design was used, conducting in-depth interviews and focus groups. Using purposive sampling, we selected 73 family caregivers and 23 health professionals (family medicine, community nursing, and social work) from the Primary Care District of Seville. The content of the information collected was analyzed in terms of the following categories: a) guilt for abandoning family and friends; b) guilt for the relationship with the dependent person; and c) guilt for placing the relative in a nursing home. To validate the findings, data sources, methodological techniques, and researchers' disciplines were all triangulated. Results indicated that women report more guilt than men for abandoning family and friends, and because of their relationship with the dependent person. However, with respect to nursing home placement, no difference was observed as a function of gender. The high incidence of caregiver guilt needs to be addressed by health professionals to avoid the emergence of other mental health issues.

Does a family meetings intervention prevent depression and anxiety in family caregivers of dementia patients? A randomized trial.

Directory of Open Access Journals (Sweden)

Karlijn J Joling

Full Text Available Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96 or usual care (n = 96 condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes, caregiver burden and quality of life (secondary outcomes. Intention-to-treat as well as per protocol analyses were performed.A substantial number of caregivers (72/192 developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38 or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10 or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49. The intervention did not reduce caregiver burden or their health related quality of life.This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

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Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; Psatisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Service Use and Satisfaction Following Acquired Brain Injury: A Preliminary Analysis of Family Caregiver Outcomes

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Degeneffe, Charles Edmund; Green, Richard; Jones, Clair

2016-01-01

Purpose: The study aimed to understand how use and satisfaction with services following discharge from an acquired brain injury (ABI) acute-care facility related to family caregiver outcomes. Methods: A correlational and descriptive study design was used. Nineteen primary family caregivers of persons recently discharged from an ABI acute-care…

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

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Arai, Hirokazu; Nagatsuka, Miwa; Hirai, Kei

2008-10-01

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

Patients with primary breast and primary female genital tract diffuse large B cell lymphoma have a high frequency of MYD88 and CD79B mutations.

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Cao, Xin-Xin; Li, Jian; Cai, Hao; Zhang, Wei; Duan, Ming-Hui; Zhou, Dao-Bin

2017-11-01

This study is to retrospectively evaluate the prevalence of MYD88 and CD79B mutations and the clinicopathologic characteristics of patients with primary diffuse large B cell lymphoma (DLBCL) of the female genital tract and breast. The characteristics, treatments, and outcomes of 19 patients diagnosed with primary DLBCL of the female genital tract and breast, who had formalin-fixed and paraffin-embedded tissues obtained from diagnostic samples diagnosed between January 2004 and June 2016, were analyzed retrospectively. Nineteen female patients (7 with primary breast and 12 with primary female genital tract DLBCL) were included in this retrospective study. Eleven patients (57.9%) carried a MYD88 mutation, including 10 with MYD8 L265P and 1 with the MYD88 L265S mutation. Seven patients (36.8%) harbored a CD79B mutation, which included two cases with CD79B Y196H, two cases with CD79B Y196N, one case with CD79B Y196D, one case with CD79B Y196F, and one case with CD79B Y196X. Four cases had both MYD88 and CD79B mutations. The clinicopathologic parameters, progression-free survival (PFS), and overall survival (OS) of the MYD88 mutation-carrying group were not significantly different from those of the MYD88 wild-type group except for higher LDH levels. Six patients received cyclophosphamide, doxorubicin, vincristine, and prednisolone (CHOP), while 13 patients received rituximab plus CHOP, and 13 patients received central nervous system prophylaxis. The median OS and PFS were 73 and 56 months, respectively. Patients with primary breast and primary female genital tract DLBCL have a high frequency of MYD88 and CD79B mutations. The presence of these mutations does not affect survival but may offer additional therapeutic options.

Compassionate Love in Individuals With Alzheimer's Disease and Their Spousal Caregivers: Associations With Caregivers' Psychological Health.

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Monin, Joan K; Schulz, Richard; Feeney, Brooke C

2015-12-01

To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms. Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Prevalence of irritable bowel syndrome in caregivers of patients with chronic diseases.

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Remes-Troche, J M; Torres-Aguilera, M; Montes-Martínez, V; Jiménez-García, V A; Roesch-Dietlen, F

2015-06-01

Caregivers are an at-risk population for psychic and physical diseases such as irritable bowel syndrome (IBS). However, it is not known whether providing care for the chronically ill patient can be considered a risk factor for developing IBS. In this study, our aim was to evaluate the prevalence of IBS according to the Rome II criteria in a group of caregivers. A cross-sectional study was conducted through an evaluation of caregivers of chronically ill patients. Subjects completed questionnaires including the Rome II Modular Questionnaire, the Hospital Anxiety and Depression Scale, the Zarit Caregiver Burden Interview (ZCBI) (an instrument for evaluating the burden experienced by caregivers), and the irritable bowel syndrome quality of life (IBS-QoL) questionnaire. Ninety-six primary caregivers (mean age was 43.6 ± 13.7 years and 87% were women) were evaluated. The mean length of time providing care was 37.6 months (3-288 months). Forty-seven caregivers (49%) presented with IBS. The caregivers with IBS had higher scores in the global ZCBI score (47 ± 8 vs 28 ± 8, p = 0.001) and on the anxiety and depression scale (p = 0.001) than those that did not have IBS. A total of 72% were diagnosed with caregiver stress syndrome; 42 of them had IBS according to the Rome II questionnaire (60% vs 18%, p = 0.001, relative risk 3.28, 95% CI: 1.4-7.4). Caregivers of chronically ill patients have a high prevalence of IBS, which is associated with depression, anxiety, and poor QoL. © 2015 John Wiley & Sons Ltd.

Association Between Caregiver Stress and Behavioral Problems in the Children of Incarcerated Fathers in Hong Kong.

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Chui, Wing Hong

2016-10-01

Objectives Caregivers of children with incarcerated parents have received little attention in the literature, though they face unique incarceration-related challenges. General caregiver research has highlighted associations between caregiver distress and children's behavioral problems, even implying that the depressive tendencies of caregivers can be 'transmitted'. The current study investigated the applicability of this notion to caregivers responsible for children of incarcerated fathers. Methods Fifty-four female caregivers of children with incarcerated parents were recruited via collaboration with a non-governmental organization. Their levels of stress and depression were measured using questionnaires, as were the behavioral problems of children under their care. The relationships between the variables were examined. Results The results firstly suggest that these caregivers are vulnerable to psychological distress, with around 57 % of them suffering from borderline to severe depression. Obtained socio-demographic characteristics were not found to have any bearing on the psychosocial functioning of caregivers or children-rather, all psychosocial variables were interlinked, and further analyses revealed that the depression of caregivers mediated the relationship between their perceived stress and internalizing/externalizing behavioral problems of the child (β = .628 and β = .468 respectively), implicating depression as a mechanism via which adversity can be transferred from a caregiver to a child. Conclusions Increasing the focus on a caregiver's mental health may be an efficacious strategy in research and practice, perhaps by providing more support for caregivers and implementing joint caregiver-child interventions to more holistically alleviate problems in families affected by parental incarceration. Limitations of the current study and further recommendations are also discussed.

Family caregiver preferences for patient decisional control among Hispanics in the United States and Latin America

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Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo

2013-01-01

Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718

Factors associated with the quality of life of subjects with Parkinson's disease and burden on their caregivers.

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Rodríguez-Violante, M; Camacho-Ordoñez, A; Cervantes-Arriaga, A; González-Latapí, P; Velázquez-Osuna, S

2015-06-01

Parkinson's disease affects the quality of life of the individual with the disease in addition to creating a burden on the caregiver. Factors related to these effects include motor and non-motor aspects of the disease, as well as traits inherent to the caregiver. We evaluated subjects with Parkinson's disease using the following instruments: Quality of Life Questionnaire PDQ-8, Movement Disorders Society Unified Parkinson's disease Rating Scale part i to iv (MDS-UPDRS), and Hoehn and Yahr staging. The Zarit Burden Inventory was used to assess all primary caregivers. Major demographic and clinical variables were also recorded. A total of 250 subjects with Parkinson's disease were included, of whom 201 had a primary caregiver. In the multivariate analysis, predictors of poor quality of life for a subject with Parkinson's disease were the MDS-UPDRS I score (β=.39, PParkinson's disease and the caregiver's perceived burden. However, the factors that determine each situation appear to be distinct. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

[Problems in the process of adapting to change among the family caregivers of elderly people with dementia].

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Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael

2016-01-01

To identify and analyse problems in adapting to change among the family caregivers of relatives with dementia. Qualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity. We obtained three main categories: 'Changing Care', 'Problems in the process of adapting to change' and 'Facilitators of the process of adapting to change'. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role. The adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role. Copyright © 2016 SESPAS. Published by Elsevier Espana. All rights reserved.

Family caregivers' views on coordination of care in Huntington's disease

DEFF Research Database (Denmark)

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

2015-01-01

BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient......'s illness may be unpredictable or not well understood by some of those involved in the treatment and care. AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. METHODS......: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross...

Conveying empathy to hospice family caregivers: team responses to caregiver empathic communication.

Science.gov (United States)

Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L

2012-10-01

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Correlations between caregiver psychiatric symptoms and offspring psychopathology in a low-resource setting

Directory of Open Access Journals (Sweden)

Camila T. Matsuzaka

2017-07-01

Full Text Available Objective: Associations between parental/caregiver depression and adverse child outcomes are well established and have been described through one or more mechanisms: child psychopathology following exposure to a depressed caregiver, child psychopathology exacerbating a caregiver’s depression, and caregiver and offspring depression sharing the same etiology. Data from low and middle-income countries is scarce. We examined correlations between common symptoms of mental disorders in caregivers and their offspring’s psychopathology in a Brazilian sample. Methods: In this cross-sectional study, adult caregivers were screened for depression during routine home visits by community health workers as part of the Brazilian Family Health Strategy. Caregivers with suspected depression were assessed using the Zung Self-Rating Depression Scale and the Self-Reporting Questionnaire (SRQ-20. Children’s symptoms were evaluated using the Strengths and Difficulties Questionnaire (SDQ. Results: The sample included 68 primary caregivers and 110 children aged 6 to 15 years. Higher caregiver scores on the SRQ-20 correlated significantly with psychiatric symptoms in offspring. Conclusion: These results substantiate our hypothesis that child psychopathology correlates with caregivers’ psychiatric symptoms. This paper adds to the growing literature on community mental health assessment and can help guide future strategies for reducing the burden of common mental disorders in caregivers and children alike in low and middle-income countries.

Disability, caregiver's dependency and patterns of access to rehabilitation care: results from a national representative study in Peru.

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Bernabe-Ortiz, Antonio; Diez-Canseco, Francisco; Vásquez, Alberto; Miranda, J Jaime

2016-01-01

To determine the prevalence of disability in Peru, explore dependency on caregiver's assistance and assess access to rehabilitation care. Data from Disability National Survey (ENEDIS), including urban and rural areas, were analyzed. Disability was defined as a permanent limitation on movement, vision, communication, hearing, learning/remembering or social relationships. Dependency was defined as the self-reported need for a caregiver to help with daily activities; and access to rehabilitation care was defined as the self-report of any therapy for disabilities. Estimates and projections were calculated using sample strata, primary sampling units and population weights, and prevalence ratios (PRs) and 95%CI were reported. From 798,308 people screened, 37,524 (5.1%; 95%CI 4.9--5.2%) had at least one disability. A total of 37,117 were included in further analysis, mean age 57.8 (SD ± 24.1) years, 52.1% women. Dependency was self-reported by 14,980 (40.5%; 95%CI: 39.2-41.9%) individuals with disabilities. A family member, usually female, was identified as a caregiver in 94.3% (95%CI: 93.3-95.3%) of dependent participants. Only 2881 (10.7%; 95%CI: 9.7-11.9%) of people with disabilities reported access to rehabilitation care. Major inequality patterns of disability burden versus access to rehabilitation care were observed by age and education level. Older age groups had higher disability burden yet lower chances of access to rehabilitation care. Conversely, the higher the education level, the lesser the overall disability burden but also the higher chances of reporting receiving care. Private healthcare insurance doubled the probability of having access to rehabilitation compared with those without insurance. Approximately 1.6 million Peruvians have at least one disability, and 40% of them require assistance with daily activities. Informal caregiving, likely female and relative-provided, is highly common. Rehabilitation care access is low and inequitable. Our results

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

Directory of Open Access Journals (Sweden)

Cheryl Kai Ting Chua

2016-11-01

Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

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Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

2016-11-15

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes.

Science.gov (United States)

Tanner, Jeremy A; Black, Betty S; Johnston, Deirdre; Hess, Edward; Leoutsakos, Jeannie-Marie; Gitlin, Laura N; Rabins, Peter V; Lyketsos, Constantine G; Samus, Quincy M

2015-04-01

To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs. Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

Determinants of medication adherence in older people with dementia from the caregivers' perspective.

Science.gov (United States)

El-Saifi, Najwan; Moyle, Wendy; Jones, Cindy; Alston-Knox, Clair

2018-05-11

ABSTRACTBackground:Adherence to treatment is a primary determinant of treatment success. Caregiver support can influence medication adherence in people with cognitive impairment. This study sought to characterize medication adherence in older people with dementia from the caregivers' perspective, and to identify influencing factors. Caregivers caring for a person with dementia and living in the community were eligible to complete the survey. Bayesian profile regression was applied to identify determinants of medication adherence measured using the Adherence to Refills and Medication Scale. Out of the 320 caregivers who participated in the survey, Bayesian profile regression on 221 participants identified two groups: Profile 1 (55 caregivers) with a mean adherence rate of 0.69 (80% Credible Interval (CrI): 0.61-0.77), and Profile 2 (166 caregivers) with a mean adherence rate of 0.80 (80% CrI: 0.77-0.84). Caregivers in Profile 1 were characterized with below data average scores for the following: cognitive functioning, commitment or intention, self-efficacy, and health knowledge, which were all above the data average in Profile 2, except for health knowledge. Caregivers in Profile 1 had a greater proportion of care recipients taking more than five medications and with late-stage dementia. Trade, technical, or vocational training was more common among the caregivers in Profile 1. Profile 2 caregivers had a better patient-provider relationship and less medical problems. Bayesian profile regression was useful in understanding caregiver factors that influence medication adherence. Tailored interventions to the determinants of medication adherence can guide the development of evidence-based interventions.

A pilot study using children's books to understand caregiver perceptions of parenting practices.

Science.gov (United States)

Bauer, Nerissa S; Hus, Anna M; Sullivan, Paula D; Szczepaniak, Dorota; Carroll, Aaron E; Downs, Stephen M

2012-06-01

To conduct a pilot study to test the feasibility and acceptability of using children's books to understand caregiver perceptions of parenting practices around common behavior challenges. A prospective 1-month pilot study was conducted in 3 community-based pediatric clinics serving lower income families living in central Indianapolis. One hundred caregivers of 4- to 7-year-old children presenting for a well-child visit chose 1 of 3 available children's books that dealt with a behavioral concern the caregiver reported having with the child. The book was read aloud to the child in the caregiver's presence by a trained research assistant and given to the families to take home. Outcomes measured were caregiver intent to change their interaction with their child after the book reading, as well as caregiver reports of changes in caregiver-child interactions at 1 month. Reading the book took an average of 3 minutes. Most (71%) caregivers reported intent to change after the book reading; two-thirds (47/71) were able to identify a specific technique or example illustrated in the story. One month later, all caregivers remembered receiving the book, and 91% reported reading the book to their child and/or sharing it with someone else. Three-fourths of caregivers (60/80) reported a change in caregiver-child interactions. The distribution of children's books with positive parenting content is a feasible and promising tool, and further study is warranted to see whether these books can serve as an effective brief intervention in pediatric primary care practice.

Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

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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…

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

Science.gov (United States)

Miyawaki, Christina E

2015-02-01

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

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

OpenAIRE

Van Houtven, Courtney Harold; Voils, Corrine I; Weinberger, Morris

2011-01-01

Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected...

Caregiving Experience and Its Relation to Perceptual Narrowing of Face Gender

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Rennels, Jennifer L.; Juvrud, Joshua; Kayl, Andrea J.; Asperholm, Martin; Gredebäck, Gustaf; Herlitz, Agneta

2017-01-01

This research examined whether infants tested longitudinally at 10, 14, and 16 months of age (N = 58) showed evidence of perceptual narrowing based on face gender (better discrimination of female than male faces) and whether changes in caregiving experience longitudinally predicted changes in infants' discrimination of male faces. To test face…

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

OpenAIRE

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressi...

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

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Polenick, Courtney A; DePasquale, Nicole

2018-01-08

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

Becoming a caregiver: attachment theory and poorly performing doctors.

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Adshead, Gwen

2010-02-01

In this paper, I review a theoretical paradigm (attachment theory) which facilitates an understanding of how human care-giving and care-eliciting behaviours develop and are maintained over the lifespan. I argue that this paradigm has particular utility in: (i) the training of doctors; (ii) understanding why some doctors and medical students experience high levels of stress, and (iii) developing interventions to help those who struggle to manage high levels of work-related stress. I carried out a review of key texts and previously published studies of attachment styles in caregivers. Large-scale epidemiological studies, using valid and reliable measures, show that insecure attachment styles are found in a proportion of normal populations of both males and females. Insecure attachment is associated with impaired stress management and subtle deficits in care-giving sensitivity. It is reasonable to assume that a proportion of students entering medical training and doctors with performance problems may have insecure attachment styles which influence how they approach their training experience and how they manage occupational stress. Attachment theory is a useful paradigm for thinking about training as a professional caregiver. Insecure early attachment experiences may be a risk factor for poor stress management in some medical students and doctors who are exposed to increasing demands as carers. These findings lead to suggestions for possible research and support interventions.

Rethinking Attachment: Fostering Positive Relationships between Infants, Toddlers and Their Primary Caregivers

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Ebbeck, Marjory; Yim, Hoi Yin Bonnie

2009-01-01

This article provides a synthesis of current theory and research in relation to attachment between infants/toddlers and their caregivers. Worldwide statistics show that there are a significant number of women working in the global labour market. In Australia, recent research also found that over 300,000 children aged 0-5 years are currently…

Characterization of the patients' caregivers on the waiting list for heart transplant at UNIFESP.

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Machado, Regimar Carla; Branco, João Nelson Rodrigues; Michel, Jeanne Liliane Marlene; Gabriel, Edmo Atique; Locali, Rafael Fagionato; Helito, Renata Almeida Barros; Buffolo, Enio

2007-01-01

To identify and describe the main caregiver of the patients on the heart transplant waiting list; to compare relevant information provided by patients and caregivers, and to classify the caregivers according to their dedication and efficiency in assisting the patient by correlating them to sociodemographic data. Descriptive study performed from October 2004 to October 2005 at UNIFESP outpatient clinics. The study sample consisted of 21 patients and their caregivers. Data were collected through a structured interview. The main caregiver was a family member (95%), usually the spouse. There were 13 women (81%) and three men (19%). Patient age ranged from 24 to 65 years (mean 44.3). Patients were married (56%); catholic (43.8%); 29% have finished elementary school; 24% have finished high school; 14% have higher education; 68.8% have a regular job; and 81.4% had their own income. All caregivers lived in the same house as the patient. Once a score was established, the caregivers were classified as: "good" - 8 (50%); "regular" - 7 (43.7%); and "bad" 1 - (6.3%). The scores were correlated with education, professional activity, and income without any significant statistical correlation. It is important to determine the instruments to recognize and describe the caregivers. The caregiver is usually a family member (spouse), female, mean age of 44.3 years; has his/her own income and, most of the time, he/she is classified as "good" or "regular", and no correlation was found with education, professional activity and income. Further studies with a larger sample should establish the relationship between the caregiver's role and the heart transplant outcomes.

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

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

2018-03-01

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

How Caregivers Make Meaning of Child Mental Health Problems: Toward Understanding Caregiver Strain and Help Seeking.

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Mayberry, Lindsay S; Heflinger, Craig Anne

Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.

Associations between child disabilities and caregiver discipline and violence in low- and middle-income countries.

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Hendricks, Charlene; Lansford, Jennifer E; Deater-Deckard, Kirby; Bornstein, Marc H

2014-01-01

Using nationally representative samples of 45,964 two- to nine-year-old children and their primary caregivers in 17 developing countries, this study examined the relations between children's cognitive, language, sensory, and motor disabilities and caregivers' use of discipline and violence. Primary caregivers reported on their child's disabilities and whether they or anyone in their household had used nonviolent discipline, psychological aggression, and physical violence toward the target child and believed that using corporal punishment is necessary. Logistic regression analyses supported the hypothesis that children with disabilities are treated more harshly than children without disabilities. The findings suggest that policies and interventions are needed to work toward the United Nations' goals of ensuring that children with disabilities are protected from abuse and violence. © 2013 The Authors. Child Development © 2013 Society for Research in Child Development, Inc.

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

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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…

Exploring caregiver burden experienced by family caregivers of patients with End-Stage Renal Disease in Nigeria

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Yemisi Okikiade Oyegbile

Full Text Available Background: Family caregivers in many African countries bear the burden of caregiving alone, with the paucity of research, especially for caregivers of End-Stage Renal Disease patients, having concealed their needs. Aim: To explore the caregiver burden of family caregivers of End-Stage Renal Disease (ESRD patients in South-West Nigeria. Design: Following a complementary mixed method data collection strategy, the quantitative data was collected using the Zarit Burden Interview questionnaire to measure the burden of caregiving. Qualitative data was thereafter obtained through in-depth, individual interviews and was analysed using content analysis. Settings: The three research settings consisted of two state hospitals and one private hospital that provide renal care in South-West Nigeria. Result: The mean burden of caregiving for the sample was 50.18 thus indicating that family caregivers experienced moderate to severe burden, which is high compared to the other studies. The participants’ experiences of caregiving revealed the following categories: total dependence, acceptance of caregiving role, competing responsibilities, financial sacrifice and “not making mistakes”. Conclusion: Understanding the extent of caregiver burden, what constitutes burden to family caregivers in low/middle-income countries, and the difficulties associated with caregiving for care-recipients with ESRD, allows appropriate strategies and interventions to be developed. Keywords: End Stage Renal Disease, Family caregivers, Caregiver burden, Complementary mixed methods, Nigeria

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

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Nagatsuka Miwa

2008-10-01

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

Caregiver burden and correlates among caregivers of children and ...

African Journals Online (AJOL)

Journal of Child and Adolescent Mental Health ... Data on socio-demographic factors, psychiatric morbidity among caregivers, and level of caregiver burden was collected using a researcher-designed socio-demographic questionnaire, Mini International Neuropsychiatric Interview, and Zarit burden interview, respectively.

The Anxiety Level of Caregivers of Neurological Patients with Dysphagia.

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

2017-08-01

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

Caregiving Appraisal in Family Caregivers of Older Adults

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Akram Farhadi

2016-04-01

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

Nurses caring for the spirit: patients with cancer and family caregiver expectations.

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Taylor, Elizabeth Johnston

2003-01-01

To determine what patients with cancer and primary family caregivers expect from nurses with regard to having their spiritual needs addressed. Descriptive, cross-sectional, qualitative study using Miles and Huberman s approach to data reduction. Outpatient and inpatient settings in a county hospital and a comprehensive cancer center, both located in a large, southwestern, metropolitan area. 28 African American and Euro-American adult patients with cancer and primary family caregivers were purposively selected to provide variation of experiences (e.g., religious backgrounds). In-depth, semistructured, tape-recorded interviews conducted by the investigator. Analysis of transcribed interviews concurrently with data collection followed a process of data concentration, data display, and conclusion drawing. Spiritual needs, spiritual care. Informants identified nursing approaches for spiritual needs, including kindness and respect; talking and listening; prayer; connecting with symmetry, authenticity, and physical presence; quality temporal nursing care; and mobilizing religious or spiritual resources. To provide spiritual care, nurses must possess requisites of a personal, relational, or professional nature. Although some patients or caregivers do not want overt forms of spiritual care, others are eager for them. Many recognize nonreligious actions or attitudes that nurses can practice to care for spiritual needs. Nurses must consider how they can address patient preconceptions and requisites for spiritual caregiving. Nurses may need to educate the public regarding their role as holistic and spiritual healthcare providers.

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

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

2015-08-01

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

Depictions of females and males in Mozambican and Victorian (Australia primary mathematics textbooks

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Adelino Evaristo Murimo

2007-10-01

Full Text Available The depiction of females and males in Mozambican Primary Mathematics textbooks for grades 6 and 7 were examined, and comparisons made with Victorian  (Australia textbooks for years 5 and 6. It was found that mathematics learning was portrayed as a  male domain in the Mozambican textbooks, reflecting what used to be the case with Australian texts of the 1970s, although there are some differences between the two countries that may be culturally based. The Victorian textbooks depicted mathematics learning as a domain for all children, and in the majority of categories examined, females and males were distributed fairly evenly. Compared to earlier reported findings, there was a general improvement in the portrayal of females in Victorian textbooks.

Caregiving and travel patterns.

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2013-06-01

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

Self-stigma among caregivers of people with mental illness: toward caregivers' empowerment.

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Girma, Eshetu; Möller-Leimkühler, Anne Maria; Dehning, Sandra; Mueller, Norbert; Tesfaye, Markos; Froeschl, Guenter

2014-01-01

In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers' self-stigma can negatively influence the patients' treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness. An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness. The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, PSelf-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, Pself-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, Pself-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers' self-stigma may negatively influence patients' treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness.

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

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

2012-01-01

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

Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

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Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

2017-07-01

For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of

Informal caregiver burden in middle-income countries Results from Memory Centers in Lima - Peru

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Nilton Custodio

Full Text Available OBJECTIVE: The aim of this study was to evaluate caregiver burden based on Zarit Burden Interview (ZBI and depression in caregivers on the Beck Depression Inventory-II (BDI-II. METHODS: Literate individuals, 18 years or older, who spoke Spanish as their native language were included. Demographic characteristics: Age, sex, education, relationship to person with dementia, length of time caregiving, other sources of help for caring, impact on the household economy, family support, and perception of impaired health; and Clinical data on care-recipients: type of dementia, time since diagnosis, treatment, and Global Deterioration Scale (GDS; the ZBI and BDI-II. Descriptive and analytical statistics were employed to assess caregiver burden and predictors of higher burden in caregivers. RESULTS: A total of 92 informal caregivers were evaluated. Regarding care-recipients, 75% were 69 years old or over, 75% had at least one year since diagnosis, 73.9% had Alzheimer's disease, 84.8% received treatment, 75% scored 5 or over on the GDS. For caregivers, 75% were 55.5 years old or over, predominantly female (81.5%, married (83.7%, the spouse of care-recipients (60.87%, had at least 10 years of education (75.0% and one year of caregiving (75%, reduced entertainment time (90.2% and self-perception of impaired health (83.7%. Median score on the ZBI was 37.5 (minimum value = 3; and maximum value = 74. The coefficient of BDI was 1.38 (p-value <0.001. CONCLUSION: This sample of Peruvian informal caregivers showed elevated ZBI values. Self-perception of worsened health, repercussion on the family economy and time caregiving were the main determinants of ZBI, although only BDI was a consistent predictor of ZBI.

Caregiver Health and Wellness

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... pain and headaches Stress and depression As a caregiver, what can I do to take care of my ... caregiving. Accept that there is a limit to what you can do as a caregiver. Recognize when you feel overwhelmed or are physically ...

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

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Corcoran, Mary A.

2011-01-01

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

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

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Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

The influence of patient, caregiver, and family factors on symptoms of anxiety and depression in children and adolescents with intractable epilepsy.

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Puka, Klajdi; Widjaja, Elysa; Smith, Mary Lou

2017-02-01

The objective was to evaluate the association of caregiver and family factors with symptoms of anxiety and depression in children and adolescents with medically refractory localization-related epilepsy (i.e., failed at least two epilepsy medications). Forty-four children (ages 6-11years) and 65 adolescents (ages 12-18years) and their parents participated in this multicentered, observational, cross-sectional study. Univariable and multivariable linear regressions were used to evaluate the influence of multiple patient, caregiver, and family characteristics on self-reported symptoms of anxiety and depression in the children and adolescents. Among children, depressive symptoms were associated with a lower proportion of life with seizures (β=.344, p=.022), caregiver depression (β=.462, p=.002), poorer family relationships (β=.384, p=.010), and poorer family mastery and social support (β=.337, p=.025); in multivariable analysis, proportion of life with epilepsy and parental depression remained significant. No significant predictors of anxiety were found among children. Among adolescents, depressive symptoms were associated with caregiver unemployment (β=.345, p=.005) and anxiety (β=.359, p=.003), low household income (β=.321, p=.012), poorer family mastery and social support (β=.334, p=.007), and greater family demands (β=.326, p=.008); in multivariable analysis, caregiver unemployment and anxiety remained significant. Greater anxiety symptoms among adolescents were associated with females (β=.320, p=.009) and caregiver depression (β=.246, p=.048) and anxiety (β=.392, p=.001) and poorer family mastery and social support (β=.247, p=.047); in multivariable analysis, female sex and caregiver anxiety remained significant. These findings highlight the central role of caregiver psychopathology, which is amenable to intervention, on children and adolescents' symptoms of anxiety and depression. Addressing caregiver psychopathology may improve children and

Effects of stress appraisal on the quality of life of adult patients with multiple myeloma and their primary family caregivers in Korea.

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La, In Seo; Yun, Eun Kyoung

2017-10-01

Modern treatment for multiple myeloma (MM) has improved disease control and prolonged survival; thus, maintenance of quality of life (QoL) is considered a great concern for MM patients and their caregivers. The purpose of this study was to identify dyadic associations between stress appraisal and the QoL of patients with MM and their caregivers in Korea. A total of 102 MM patient-caregiver dyads participated in this study. They independently reported their stress appraisal and QoL. The study was guided by a transactional model of stress and coping, and analyzed by using the actor-partner interdependence model. The results revealed good data adjustment with acceptable indices: χ 2  = 6.211 (df = 6), CFI = 0.999, TLI = 0.994, RMSEA = 0.019, and SRMR = 0.043. MM patients' QoL were significantly correlated with caregivers' QoL. The stress appraisals of patients and caregivers mutually influenced each other's QoL. The patients' illness perception and the caregivers' burden were strong predictors for their QoL. The self-efficacy of patients and caregivers was also associated with their QoL. Our findings suggest that the way patients and caregivers perceive and respond to stress plays a significant role in their QoL during the treatment experience. Interventions designed to reconstruct negative perspectives and improve self-efficacy may help both patients and caregivers to improve their QoL. Copyright © 2016 John Wiley & Sons, Ltd.

Scale for positive aspects of caregiving experience: development, reliability, and factor structure.

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Kate, N; Grover, S; Kulhara, P; Nehra, R

2012-06-01

OBJECTIVE. To develop an instrument (Scale for Positive Aspects of Caregiving Experience [SPACE]) that evaluates positive caregiving experience and assess its psychometric properties. METHODS. Available scales which assess some aspects of positive caregiving experience were reviewed and a 50-item questionnaire with a 5-point rating was constructed. In all, 203 primary caregivers of patients with severe mental disorders were asked to complete the questionnaire. Internal consistency, test-retest reliability, cross-language reliability, split-half reliability, and face validity were evaluated. Principal component factor analysis was run to assess the factorial validity of the scale. RESULTS. The scale developed as part of the study was found to have good internal consistency, test-retest reliability, cross-language reliability, split-half reliability, and face validity. Principal component factor analysis yielded a 4-factor structure, which also had good test-retest reliability and cross-language reliability. There was a strong correlation between the 4 factors obtained. CONCLUSION. The SPACE developed as part of this study has good psychometric properties.

Proinflammatory proteins in female and male patients with primary antiphospholipid syndrome: preliminary data.

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Bećarević, Mirjana; Ignjatović, Svetlana

2016-10-01

The latest classification criteria for the diagnosis of the antiphospholipid syndrome (APS, an autoimmune disease characterized by thromboses, miscarriages and presence of antiphospholipid antibodies (Abs)) emphasized that thrombotic manifestations of APS should be without any signs of an inflammatory process. However, atherosclerosis (a chronic inflammatory response to the accumulation of lipoproteins in the walls of arteries) and APS are characterized by some similar features. We evaluated whether proinflammatory proteins were associated with the features of the primary APS (PAPS). PAPS patients without obstetric complications and with impaired lipid profile were included in the study. Antiphospholipid antibodies, TNF-alpha, and apo(a) were determined by ELISA. Complement components and hsCRP were measured by immunonephelometry. Decreased C3c was observed in female patients with increased titers of IgG anti-β2gpI (χ(2) = 3.939, P = 0.047) and in male patients with increased IgM anticardiolipin Abs (χ(2) = 4.286, P = 0.038). Pulmonary emboli were associated with interleukin (IL)-6 in male (χ(2) = 6.519, P = 0.011) and in female (χ(2) = 10.405, P = 0.001) patients. Cerebrovascular insults were associated with LDL-cholesterol (P = 0.05, 95 % CI: 1.003 - 12.739) in female and with apo(a) (P = 0.016, 95 % CI: 0.000-0.003) in male patients. Older female patients had increased LDL-cholesterol levels and frequency of myocardial infarctions. Proinflammatory proteins were associated with features of primary APS. No real gender differences in regard to proinflammatory protein levels were observed. Premenopausal state of female PAPS patients confers lower cardiovascular risk.

Social network of family caregivers of disabled and dependent patients

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Cintia Hitomi Yamashita

2014-08-01

Full Text Available Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p<0,05. Few caregivers participated in activities outside the home and the average number of people they had a bond was 4,4 relatives and 3,6 friends. Caregivers who reported pain and those who had a partner had higher average number of relatives who to trust. The average number of friends was higher in the group that reported use of medication for depression. Total and per capita incomes correlated with the social network. It was found that family members are the primary caregiver’s social network.

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

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

2009-01-01

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

A new instrument to measure quality of life of heart failure family caregivers.

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Nauser, Julie A; Bakas, Tamilyn; Welch, Janet L

2011-01-01

Family caregivers of heart failure (HF) patients experience poor physical and mental health leading to poor quality of life. Although several quality-of-life measures exist, they are often too generic to capture the unique experience of this population. The purpose of this study was to evaluate the psychometric properties of the Family Caregiver Quality of Life (FAMQOL) Scale that was designed to assess the physical, psychological, social, and spiritual dimensions of quality of life among caregivers of HF patients. Psychometric testing of the FAMQOL with 100 HF family caregivers was conducted using item analysis, Cronbach α, intraclass correlation, factor analysis, and hierarchical multiple regression guided by a conceptual model. Caregivers were predominately female (89%), white, (73%), and spouses (62%). Evidence of internal consistency reliability (α=.89) was provided for the FAMQOL, with item-total correlations of 0.39 to 0.74. Two-week test-retest reliability was supported by an intraclass correlation coefficient of 0.91. Using a 1-factor solution and principal axis factoring, loadings ranged from 0.31 to 0.78, with 41% of the variance explained by the first factor (eigenvalue=6.5). With hierarchical multiple regression, 56% of the FAMQOL variance was explained by model constructs (F8,91=16.56, Pinstrument that has evidence of reliability and validity in HF family caregivers. Physical, psychological, and social well-being can be measured with 4-item subscales. The FAMQOL scale could serve as a valuable measure in research, as well as an assessment tool to identify caregivers in need of intervention.

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

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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

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

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

2016-12-01

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

Social support seeking and self-efficacy-building strategies in enhancing the emotional well-being of informal HIV/AIDS caregivers in Ibadan, Oyo state, Nigeria.

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Okeke, Bernedette Okwuchukwu

2016-01-01

This study examined the relative efficacy of social support seeking (SSS) and self-efficacy building (SEB) in the management of emotional well-being of caregivers of people suffering from HIV/AIDS. It was based at the United States President's Emergency Plan for AIDS Relief (PEPFAR) center in the University College Hospital, Ibadan, Oyo state, being the first and the largest teaching hospital in Nigeria. A 3 × 2 factorial design consisting of treatment and a control group was used. The columns have two levels of gender being male and female caregivers. One-hundred and sixty-five (165) caregivers who were taking care of people that are suffering from HIV/AIDS were purposively selected and randomly assigned to the treatment groups and control. The treatment was carried out for a period of eight weeks. Two null hypotheses were tested, both at .05 levels of significance. Data were collected with the use of standardized intruments rating scale; social support scale, general self-efficacy scale and emotional well-being scale. ANCOVA was used to establish significant treatment effects with the pretest as covariate. Even though SSS and SEB were both found to be effective in enhancing the emotional well-being of informal caregivers in this study when compared to the controls, SSS was significantly more effective than SEB in achieving this goal. Since the HIV/AIDS patients cannot be adequately cared for in the hospital settings due to severe shortages of material, personnel and time, serious efforts should be made by the three levels of the health care system viz: the primary, secondary and tertiary health care systems, to encourage the employment of the psychological management of caregivers of people suffering from HIV/AIDS. Also, the psychologists, clinical psychologists and the significant others should be encouraged to employ this psychological management in the care of HIV/AIDS informal caregivers.

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

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

2016-10-01

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

Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

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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.

An assessment of primary care attributes from the perspective of female healthcare users1

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Lima, Eliane de F?tima Almeida; Sousa, Ana In?s; Primo, C?ndida Cani?ali; Leite, Francielie Marabotti Costa; Lima, Rita de Cassia Duarte; Maciel, Ethel Leonor N?ia

2015-01-01

OBJECTIVE: this study sought to assess the quality of the Family Health Strategy (FHS) and investigated the association between primary care attributes (PCAs) and the sociodemographic characteristics of users. METHOD: a total of 215 female FHS users were interviewed for this descriptive and cross-sectional study. The Primary Care Assessment Tool (PCATool), Adult Edition was used, and the results were analyzed using Fisher's exact tests, Pearson's chi-square tests and logistic regressions. RES...

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

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