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

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

2018-01-01

Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult. A systematic search was carried out up to September 2017 in the following databases: MEDLINE (PubMed), CINAHL, EMBASE, PsycINFO), Scopus and ISI Proceedings, and a meta-analysis was performed with the results of the selected and included studies. Fifty-six studies were included in the meta-analysis, which provided 46 independent comparisons for perceived support and 16 for received support. Most of these studies were cross-sectional. There was a moderate, negative association of perceived social support on subjective burden (r = -0.36; CI 95% = -0.40, -0.32) and a very small, negative association of received support on subjective burden (r = -0.05; CI 95% = -0.095, -0.001). 1) perceived and received support are not redundant constructs, 2) the relationships between social support and subjective burden depend on whether the social support is measured as perceived or received, 3) the relationship of perceived social support with subjective burden has a bigger effect size than that of received social support, the relation between received support and subjective burden being clinically irrelevant, 4) perceived social support may be a good predictor of subjective burden. Our findings broadly support interventions promoting social support in caregivers to prevent or alleviate subjective burden, and specifically, to intervene on the promotion of perceived social support more than on the promotion of received social support when preventing or

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

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

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

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

2018-01-31

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

Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

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Mayara Barbosa Sindeaux Lima

2016-08-01

Full Text Available Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.

The moderating role of social support on depression and anxiety for gastric cancer patients and their family caregivers.

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Jeong, Ansuk; An, Ji Yeong

2017-01-01

There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers. Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively. In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients. While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.

A comparative study of care burden and social support among caregivers of persons with schizophrenia and epilepsy

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Nilufer Karim

2015-07-01

Full Text Available Background: The caregivers of persons with epilepsy and schizophrenia undergo severe emotional, physical, financial burden due to the nature, chronicity, disability, and stigma attached to the illness. Aim: To assess the burden and social support among caregivers of persons with schizophrenia and epilepsy. Method: The study was conducted at the Out Patient Department of LokopriyaGopinathBordoloi Regional Institute of Mental Health, Tezpur. It was a comparative study. Purposive sampling technique was used for selection of the sample. The sample for the current study comprised of caregivers of 30 persons with schizophrenia and 30 persons suffering from epilepsy. A semi-structured socio-demographic data sheet, the Burden Assessment Schedule (BAS, the Social Support Questionnaire, and the General Health Questionnaire were administered to the caregivers. Results: There was no significant difference reported by the caregivers in the two groups with the entire domains of BAS and perceived social support. Physical and mental health, and caregivers’ strategy domains of BAS had significant negative correlation at 0.05 levels with perceived social support. External support, support of patient, taking responsibility, and other relation domains of BAS had significant negative correlation at the 0.01 level with perceived social support. Conclusion: While the two groups had no significant difference with the entire domains of BAS and perceived social support; physical and mental health, and caregivers’ strategy had significant negative correlation with perceived social support.

Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication.

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Harvey-Knowles, Jacquelyn; Faw, Meara H

2018-04-01

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

Caregiving-specific worry, affiliate stigma, and perceived social support on psychological distress of caregivers of children with physical disability in Hong Kong.

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Ma, Gloria Y K; Mak, Winnie W S

2016-01-01

The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

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

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

2015-01-01

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

Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.

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Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara

2015-01-01

Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.

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

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Phillips, Linda R; Crist, Janice

2008-10-01

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

Loneliness, depression, and social support of patients with cancer and their caregivers.

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Şahin, Zümrüt Akgün; Tan, Mehtap

2012-04-01

Loneliness is a significant psychosocial concern for patients with cancer, and depression may be an antecedent to loneliness. To date, no studies have directly addressed the relationship of loneliness, depression, and social support among Turkish patients with cancer and their caregivers. The emotional responses that result from a cancer diagnosis vary and may include anxiety, anger, frustration, or depression. Because of the unexpected demands and emotions thrust on them, the caregivers of patients with cancer may be just as likely to experience loneliness or depression following a cancer diagnosis. As a result, this study sought to examine that relationship among a sample of 60 patients with cancer and 60 caregivers.

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.

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

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

2015-01-01

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

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

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Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed

2017-02-01

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

The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review

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Maja Lopez Hartmann

2012-08-01

Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

Resilience and social support as protective factors against abuse of patients with dementia: A study on family caregivers.

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Serra, Lídia; Contador, Israel; Fernández-Calvo, Bernardino; Ruisoto, Pablo; Jenaro, Cristina; Flores, Noelia; Ramos, Francisco; Rivera-Navarro, Jesús

2018-05-24

Scientific literature has identified different vulnerability factors associated to abuse in people with dementia (PWD), but little is known about the psychosocial protective variables against abuse. The main objective of this study is to investigate a set of caregiver and patient factors linked to abuse-related behavior of PWD. A total of 326 primary and family caregivers, residents of the Castilla and León community (Spain), were evaluated. All participants filled out a standardized protocol, which assessed the sociodemographic characteristics, patient and care-related variables, as well as the perceived burden, resilience, and social support. Abuse-related behavior was evaluated using the Caregiver Abuse Screen. Results show that the severity of cognitive impairment and behavior disorders of PWD, a greater number of caregiving hours, a worse previous relationship with the caregiver, and perceived burden are positively related with abuse. However, resilience and social support showed a negative relationship with Caregiver Abuse Screen scores, suggesting a protective effect on abuse, even after controlling the effect of a number of covariates. Indeed, resilience was the only variable that remained significant after including the effect of burden. This paper states the role of burden in abuse of PWD, while resilience and social support are abuse protective factors. These variables should be considered in future guidelines for the prevention of abuse against PWD. Copyright © 2018 John Wiley & Sons, Ltd.

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

African Journals Online (AJOL)

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

[Learning about the social support provided to the family caregiver assisting a family dependent].

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Nardi, Edileuza de Fátima Rosina; de Oliveira, Magda Lúcia Félix

2008-03-01

The elderly suffering disability caused by diseases need a network of support in order to continue feeling socially active. This study aims at characterizing the social support provided to the family caregiver who looks after an elderly dependent, in Brazil. A descriptive study with qualitative approach was conducted at the municipality of Jandaia do Sul, Paraná, Brazil. Data collection was performed through semi-structured interviews with 19 primary family caregivers. Data analysis was based on Thematic Analysis. The results show that when it comes to informal sources, the reference to grown up children was mostly used, while as formal ones Unidade Básica de Saúde, the Brazilian Basic Health Unit, and the team from Programa Saúde da Familia, Brazilian Pro-Family Health Program, were referred to. However, the image of Community Health Agent was the most mentioned. Thus, it is necessary to create support nets to integrate both formal and informal systems.

A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members.

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Dam, Alieske E H; Boots, Lizzy M M; van Boxtel, Martin P J; Verhey, Frans R J; de Vugt, Marjolein E

2017-06-13

Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks. Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes. Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance. Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers.

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Pailler, Megan E; Johnson, Teresa M; Kuszczak, Sarah; Attwood, Kristopher M; Zevon, Michael A; Griffiths, Elizabeth; Thompson, James; Wang, Eunice S; Wetzler, Meir

2016-09-01

Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.

The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS.

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Sharer, Melissa; Cluver, Lucie; Shields, Joseph J; Ahearn, Frederick

2016-03-01

Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.

Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

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Williams, Allison M; Wang, Li; Kitchen, Peter

2016-03-01

This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

An Evaluation of Behavioral Skills Training for Teaching Caregivers How to Support Social Skill Development in Their Child with Autism Spectrum Disorder.

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Hassan, Mahfuz; Simpson, Andrea; Danaher, Katey; Haesen, James; Makela, Tanya; Thomson, Kendra

2018-06-01

Limited research has explored how to best train caregivers to support their child with autism spectrum disorder (ASD) despite caregivers being well suited to promote generalization and maintenance of their child's skills in the natural environment. Children with ASD have been shown to benefit from social skill training, which is not always conducted in the natural context. This research examined the efficacy of behavioral skills training (BST) with, and without in situ training (IST), for teaching caregivers how to also use BST to support their child's context-specific social skills. Although caregivers met mastery criterion within BST sessions, their skills did not generalize to the natural environment until IST was introduced. The implications of the findings are discussed.

Apoio social na experiência do familiar cuidador Social support in the family caregiver experience

Directory of Open Access Journals (Sweden)

Ana Karina Monte Cunha Marques

2011-01-01

Full Text Available Estudo qualitativo, do tipo descritivo, objetivando conhecer a experiência de cuidar de pessoas doentes no contexto dos lares, analisando as implicações do apoio social na saúde física e emocional do familiar cuidador. Os dados foram coletados por meio da entrevista semi-estruturada junto a dezoito familiares cuidadores de pessoas com doenças crônicas. A técnica do discurso do sujeito coletivo foi utilizada para a organização dos dados. Constatou-se que todos os informantes eram do sexo feminino, com idade média de cinquenta anos, possuiam até o nível médio de escolaridade, cuidavam ininterruptamente de pessoa doente, predominando as mães com sequela de acidente vascular cerebral. Relatavam comprometimento da sua saúde relacionado ao cuidado realizado: dor na coluna, hipertensão, enxaqueca e depressão. Os discursos coletivos são sugestivos da quebra das redes sociais e da escassez de apoio, levando a pessoa a rejeitar a condição de cuidador. A sobrecarga ficou caracterizada pelo familiar cuidador perceber-se diante de inúmeras situações de enfrentamento, muitas das quais não conseguia administrar.This is a qualitative and descriptive study aiming to know the experience of taking care of sick people in the context of homes, analyzing the implications of the social support in the physical and emotional health of the family caregiver. The data had been collected by means of the semi-structured interview with 18 family caregivers of people with chronic illnesses. The technique of the Collective subject discourse was used for the organization of the data. One evidenced that all the informers were of the feminine sex, with average age of 50 years and medium instructional level. They took care uninterruptedly of sick people predominating the mothers with sequel of stroke. They reported health complications related to the care carried through: back pain, hypertension, migraine and depression. The collective speeches are

Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial.

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Dam, Alieske E H; de Vugt, Marjolein E; van Boxtel, Martin P J; Verhey, Frans R J

2017-08-29

Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T 0 ) and at 8-week (T 1 ), 16-week (T 2 ) and 42-week follow up (T 3 ). The 16-week follow-up assessment (T 2 ) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Dutch trial register, NTR6131 . Registered on 20 October 2016.

Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer's disease.

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Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying

2009-02-01

This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.

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

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

2018-04-01

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

Caregiving: The impact on emotional support for single women.

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Burnley, C S

1987-01-01

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

Linear units improve articulation between social and physical constructs: An example from caregiver parameterization for children supported by complex medical technologies

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Bezruczko, N.; Stanley, T.; Battle, M.; Latty, C.

2016-11-01

Despite broad sweeping pronouncements by international research organizations that social sciences are being integrated into global research programs, little attention has been directed toward obstacles blocking productive collaborations. In particular, social sciences routinely implement nonlinear, ordinal measures, which fundamentally inhibit integration with overarching scientific paradigms. The widely promoted general linear model in contemporary social science methods is largely based on untransformed scores and ratings, which are neither objective nor linear. This issue has historically separated physical and social sciences, which this report now asserts is unnecessary. In this research, nonlinear, subjective caregiver ratings of confidence to care for children supported by complex, medical technologies were transformed to an objective scale defined by logits (N=70). Transparent linear units from this transformation provided foundational insights into measurement properties of a social- humanistic caregiving construct, which clarified physical and social caregiver implications. Parameterized items and ratings were also subjected to multivariate hierarchical analysis, then decomposed to demonstrate theoretical coherence (R2 >.50), which provided further support for convergence of mathematical parameterization, physical expectations, and a social-humanistic construct. These results present substantial support for improving integration of social sciences with contemporary scientific research programs by emphasizing construction of common variables with objective, linear units.

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.

Apoyo social y Carga de la persona cuidadora en una Unidad de Salud Mental Infantil Social support and burden's caregiver in a children's Mental Health Unit

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José Manuel Perea-Baena

2009-09-01

Full Text Available Los cuidados parentales de hijos con trastornos mentales producen estrés y dificultades de afrontamiento en las familias. Muchos estudios han asociado la carga familiar con factores como el apoyo social y dificultades del paciente como problemas de conducta o gravedad del Trastorno. Se realizó un análisis transversal para averiguar la influencia del apoyo social, apoyo familiar y gravedad del trastorno en la sobrecarga de la persona cuidadora. De un total de 96 pacientes, han participado 83 madres y 55 padres. Los resultados muestran mayor sobrecarga en las madres, una relación negativa entre apoyo y sobrecarga y una influencia de la gravedad del trastorno en la sobrecarga.Parental care for a child with mental disorder generates stress and coping difficult. Many studies have associated burden's caregiver with factors such social support and child factor such child behaviour problems and severity of disability. This study employed a cross-sectional design to verify the influence of the social support, family support and severity of disorder in the caregiver's burden. Of a whole of 96 patients, 83 mothers and 55 parents have taken part. Results showed major burden in the mother, a negative relation between social support and burden and an influence of the severity of disorder in caregiver's burden.

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

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Paul B. Perrin

2015-01-01

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

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...

Resilience among older caregivers in rural Namibia: The role of financial status, social support and health.

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Kalomo, Eveline Ndii; Lee, Kyoung Hag; Lightfoot, Elizabeth; Freeman, Rachel

2018-04-23

Namibia has one of the highest human immunodeficiency virus (HIV) prevalence rates and one of the highest rates of orphanhood in the world, and older caregivers provide much of the care to Namibians living with HIV and acquired immune deficiency syndrome (AIDS) (UNAIDS, 2014). In this study, the authors explore how financial status, social support, and health were related to the resilience of caregivers caring for people affected by HIV and AIDS in rural northern Namibia, Africa. Data were collected through a structured interview from (N = 147) caregivers from the Zambezi region. Findings from this study show that employment and physical health were significantly associated with increased resilience in older caregivers. Our findings point to the need for employment assistance and health services to improve the resilience of caregivers caring for people living with HIV and AIDS. We conclude that there is a need for more vigorous concerted efforts from public and private sector practitioners and policy makers to create more sustained formal employment opportunities and intervention programs aimed at improving the overall health of older HIV caregivers, especially those residing in rural HIV endemic communities in developing countries.

Social Isolation among Caregivers of Court-Involved Youths: A Qualitative Investigation

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Forsbrey, April D.; Frabutt, James M.; Smith, Heather L.

2005-01-01

The authors used qualitative research methodology to examine the lives of caregivers of court-involved youths. Caregiver social isolation, including overall lack of support, lack of school support, and isolation from self, emerged as a salient theme across 7 domains. Implications for counselors are discussed, and brief descriptions of several…

Cancer Support Needs for African American Breast Cancer Survivors and Caregivers.

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Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell

2016-03-01

Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races.

An employee assistance program for caregiver support.

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Mains, Douglas A; Fairchild, Thomas J; René, Antonio A

2006-01-01

The Comprehensive Caregiver Choices Program provided support for employee caregivers of elderly people for employees at a hospital in Fort Worth, Texas. Key informant interviews and focus groups provided direction for program development and implementation. A full-time MSW and professionals with expertise in gerontology/geriatrics provided education and care coordination services to caregivers. Approximately 4% of the hospital's workforce participated in the program. Attendees evaluated educational sessions and follow-up interviews were conducted with program participants. Caregiver support programs must continue to seek innovative and creative marketing and service delivery methods to reach out and assist working caregivers in need of support.

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication.

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Gage-Bouchard, Elizabeth A; LaValley, Susan; Mollica, Michelle; Beaupin, Lynda Kwon

Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.

Taking Care of You: Support for Caregivers

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... For Parents / Taking Care of You: Support for Caregivers What's in this article? The Caregiver's Dilemma Tips for Caregivers More Tips Getting Help ... there are moments when the sheer magnitude of what you're up against is so ... not alone. The Caregiver's Dilemma When you're the caregiver of a ...

Caregiver issues and AIDS orphans: perspectives from a social worker focus group.

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Paige, C Y; Johnson, M S

1997-10-01

This study examines social workers' perceptions of the needs of families coping with acquired immunodeficiency syndrome (AIDS). This research investigates the problems of family caregivers of children orphaned by human immunodeficiency virus (HIV)-related death of their parents. A qualitative semistructured interview format was used in a focus group of 18 social workers. Four questions were designed to assess family needs and resources, as well as to evaluate the social workers' perspectives of governmental policies affecting these families. A list of four problems and two recommendations for change evolved from the focus group. Inadequate finances to house and care for the children was the primary cause for distress in these families. The major governmental policy that hindered the social workers' ability to assist families pertained to the low financial entitlement for caregivers who are related to the orphaned child. It was noted that unrelated caregivers receive substantially more money for the care of these children than family caregivers receive. Recommendations were made to change this policy and to develop guardianship laws that facilitate families' abilities to provide care to AIDS orphans. Family caregivers of AIDS orphans are bombarded with great demands and limited resources. This analysis of their situation from the social workers' perspective is a positive step toward the improvement of support services for these families. Further research should include individual qualitative interviews assessing the needs of the caregivers and AIDS orphans.

Social Networking Family of Caregivers during Hospitalization of Children.

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Menezes, Marina; Moré, Carmen Leontina Ojeda Ocampo; Barros, Luísa

2016-06-01

To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay. Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting. Data analysis showed that the most active social network was comprised of families through emotional support, material aid and services. Relations with hospital health care team and the hospital context were cited as providing support to the caregivers of the hospitalized child. The identification of social networks in the child's hospitalization course enables equip professionals working in the institution aiming at better targeting of actions and care for the family and hospitalized children. Identificar e analisar as redes significativas de suporte familiar, social e hospitalar descritas pelos familiares acompanhantes de crianças hospitalizadas de 5 a 12 anos, durante o período de internação. Estudo descritivo, exploratório e de cunho qualitativo realizado com 20 acompanhantes de crianças hospitalizadas em uma unidade hospitalar em uma cidade do Sul do Brasil, por meio de entrevistas semiestruturadas e dos Mapas de Redes sociais significativas, adaptado para o contexto hospitalar. A análise dos dados demonstrou que a rede social mais atuante foi composta por familiares, através de apoio emocional, ajuda material e de serviços. As relações com a equipe de saúde do hospital e com o contexto hospitalar foram citadas como capazes de fornecer apoio ao acompanhante da criança internada. a identificação das redes sociais no curso da hospitalização da criança possibilita instrumentalizar os profissionais que atuam na instituição objetivando um melhor direcionamento de ações e cuidados destinados à família e a

A Pilot Evaluation of the Family Caregiver Support Program

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Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.

2010-01-01

The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…

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.

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

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

2018-03-01

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

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers.

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Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip

2017-06-21

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by

Early counselling and support for patients with mild Alzheimer's disease and their caregivers: a qualitative study on outcome

DEFF Research Database (Denmark)

Sørensen, Lisbeth V; Waldorff, Frans B; Waldemar, Gunhild

2008-01-01

OBJECTIVES: The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease...... with the challenges their partner's disease involved, and they were able to face everyday life and social relations with more serenity and competence. After the intervention, both patients and caregivers sought suitable support groups they could join as a permanent activity and caregivers sought permanent counselling...... revealed that patients found support groups relevant: they found it stimulating to be with peers, it supported their self-esteem, and it supported them in finding new ways of managing everyday life and social relations. During and after the intervention, caregivers were better able to cope...

Effects of Social Support and Volunteering on Depression Among Grandparents Raising Grandchildren.

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Jang, Heejung; Tang, Fengyan

2016-10-01

Guided by a stress-buffering model, this study examined the effect of the caregiver stress on depressive symptoms, specifically the moderating effects of social support and volunteering on the relationship between stress and depressive symptoms among grandparent caregivers. The 2010 Health and Retirement Survey included a sample of 1,973 grandparent caregivers who reported their stress scores. Findings suggest that positive social support and volunteering significantly moderated the relationship between stress and depressive symptoms. In particular, the study revealed that perceived quality of relations may help grandparent caregivers cope with their ongoing stress and enlarged social interaction may buffer the increase of negative stressor outcomes. © The Author(s) 2016.

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.

The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients.

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Hudson, Peter; Aranda, Sanchia

2014-09-01

A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients

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Hudson, Peter; Aranda, Sanchia

2014-01-01

Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195

'Why did you not tell me?': perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya.

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Vreeman, Rachel C; Scanlon, Michael L; Inui, Thomas S; McAteer, Carole I; Fischer, Lydia J; McHenry, Megan S; Marete, Irene; Nyandiko, Winstone M

2015-06-01

We sought to better understand how social factors shape HIV disclosure to children from the perspective of caregivers and HIV-infected children in Kenya. We conducted a qualitative study using focus group discussions (FGDs) to gain perspectives of caregivers and children on the social environment for HIV disclosure to children in western Kenya. FGDs were held with caregivers who had disclosed the HIV status to their child and those who had not, and with HIV-infected children who knew their HIV status. FGD transcripts were translated into English, transcribed, and analyzed using constant comparison, progressive coding, and triangulation to arrive at a contextualized understanding of social factors influencing HIV disclosure. Sixty-one caregivers of HIV-infected children participated in eight FGDs, and 23 HIV-infected children participated in three FGDs. Decisions around disclosure were shaped by a complex social environment that included the caregiver-child dyad, family members, neighbors, friends, schools, churches, and media. Whether social actors demonstrated support or espoused negative beliefs influenced caregiver decisions to disclose. Caregivers reported that HIV-related stigma was prominent across these domains, including stereotypes associating HIV with sexual promiscuity, immorality, and death, which were tied to caregiver fears about disclosure. Children also recognized stigma as a barrier to disclosure, but were less specific about the social and cultural stereotypes cited by the caregivers. In this setting, caregivers and children described multiple actors who influenced disclosure, mostly due to stigmatizing beliefs about HIV. Better understanding the social factors impacting disclosure may improve the design of support services for children and caregivers.

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

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

2016-03-01

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

Acquisition of Social Support and Linguistic Characteristics of Social Media Posts About Young Adult Cancer.

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Warner, Echo L; Ellington, Lee; Kirchhoff, Anne C; Cloyes, Kristin G

2018-04-01

Social media (SM) is a burgeoning source of social support for young adults (YAs). We explored the language used to communicate about YA cancer on Instagram and for indicators of social support (i.e., number of likes and comments). Instagram posts using #youngadultcancer were randomly selected (N = 50). Text and hashtags were collected, and posts were coded for gender (female and male), treatment status (active treatment and survivorship), type of user (individual and organization), and caregiver status (yes and no). Indicators of social support, valence (e.g., positive vs. negative terms), and lexical content (e.g., emotional terms and pronouns) were measured using Yoshikoder and Linguistic Inquiry Word Count and compared by gender, treatment status, type of user, and caregiver status. Survivors' posts had more likes compared to those in active treatment (mean: 54.5 vs. 32.3, p = 0.03). Individuals' posts had more comments than those of organizations (mean: 5.3 vs. 1.2, p = 0.01). More positive (30%) than negative (13%) terms were used by survivors (p Instagram users communicate about YA cancer and whether the language they use garners social support. Studying online language use may help YA patients, caregivers, and organizations use SM to gain social support.

Hope and social support in elderly patients with cancer and their partners: an actor-partner interdependence model.

Science.gov (United States)

Goldzweig, Gil; Baider, Lea; Andritsch, Elisabeth; Rottenberg, Yakir

2016-12-01

Assess relationships between oldest-old (minimum 86 years) patients' perceived social support to their own and their spousal caregivers' hope through application of the actor-partner interdependence model (APIM). 58 dyads of patients and their spousal caregivers completed standardized self-report measures of depression, distress, hope and social support. Patients presented high distress levels. Among patients and spouses, perceived social support was positively correlated to their own level of hope (β = 0.44, p hope (β = -0.25, p hope among dyads of oldest-old patients and their spousal caregivers. Patients and caregiver seem to utilize social support to enhance hope.

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

Directory of Open Access Journals (Sweden)

Nagatsuka Miwa

2008-10-01

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

A Multilevel Framework for Increasing Social Support in Schools

Science.gov (United States)

Grapin, Sally L.; Sulkowski, Michael L.; Lazarus, Philip J.

2016-01-01

In school contexts, social support refers to the overall perception one has of feeling included and cared for in a community of peers, teachers, caregivers, and others. Social support is critical for promoting positive academic and psychosocial outcomes for students. Conversely, a lack of perceived social support may be associated with increased…

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.

Understanding How to Support Family Caregivers of Seniors with Complex Needs

Science.gov (United States)

Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

2017-01-01

Purpose of the Study The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. Design and Methods A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Results Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign. PMID:28690707

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

Directory of Open Access Journals (Sweden)

Giesbrecht Melissa

2012-11-01

Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced

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.

Family caregiver recruitment via social media: challenges, opportunities and lessons.

Science.gov (United States)

Hansen, Dana; Sheehan, Denice K; Stephenson, Pam

2017-02-02

Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

Psychological well-being of parents and family caregivers of children with hearing impairment in south India: influence of behavioural problems in children and social support.

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van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu

2014-08-01

Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.

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

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

2009-11-01

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

Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

Science.gov (United States)

Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho

2010-06-01

Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

[Social media monitoring of asthmatic children treated in a specialized program: Parents and caregivers expectations].

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Urrutia-Pereira, Marilyn; Ávila, Jennifer Bg; Cherrez-Ojeda, Ivan; Ivancevich, Juan Carlos; Solé, Dirceu

2015-01-01

Social media has been used in support of patients with asthma. However, it remains unclear what are the expectations of parents or caregivers of asthmatic patients. To evaluate the expectations of parents or caregivers of asthmatic children treated at Children's Asthma Prevention Program (PIPA), Uruguaiana, RS, in relation to the use of social media. An observational, descriptive, cross-sectional survey of parents or caregivers of children seen at Children's Asthma Prevention Program through responses to a written questionnaire on the use of new technologies and different applications to enhance information about asthma. 210 parents or caregivers (median age: 25 years; age range: 18-42 years of patients were enrolled. The mean age of their children was 7.3 years (age range: 2 to 18 years), the mean duration of asthma was 4.7 years and 65% of parents/caregivers of these children had less than eight years of schooling. Most of them (72%) had no access to the Internet via cell/mobile phones and only 18% actively used to gathered information about asthma by internet. There was high interest (87%) in receiving information via social media. Parents or caregivers of children attending the PIPA program expressed high interest in using social media. However, few use it to control their children's disease. While providing a great benefit to use social media as a mean of communication in health, the content needs to be monitored for reliability and quality. The privacy of users (doctors and patients) must be preserved and it is very important to facilitate the access to Internet.

Caregivers' support needs and factors promoting resiliency after brain injury.

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Kitter, Bryony; Sharman, Rachael

2015-01-01

This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Semi-structured interviews were conducted with caregivers (n = 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers' support needs and coping strategies. Two specific findings of interest include a negative association between severity of brain injury and caregiver's desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia's upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.

Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients.

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Jukic P, Nikolina; Gagliardi, Cristina; Fagnani, Donata; Venturini, Claudia; Orlandoni, Paolo

2017-08-01

The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". This qualitative study underlined the challenges and adaptations of

Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review.

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Oh, Juyeon; Kim, Jung A

2017-12-01

To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Scoping review. We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals

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

OpenAIRE

Fabiola Yonte Huete; María Belén Yonte Huete; Mª Teresa Meneses Jiménez

2012-01-01

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. R...

Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: a qualitative interview study.

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Blusi, Madeleine; Kristiansen, Lisbeth; Jong, Mats

2015-09-01

Many older spouse caregivers are tied to the home by their caring duties and feel isolated. The values of supporting older caregivers are well known. In rural areas with long distances and decline in essential services, attending caregiver support groups can be difficult. Using Internet-based services can provide an opportunity for rural caregivers to participate in caregiver support, regardless of geographical distances and without the need for physical presence. This study aimed to explore how Internet-based caregiver support may influence the experience of isolation among older spouse caregivers in rural areas. An intervention study where 63 older rural caregivers received an Internet-based caregiver support service. A qualitative interview study based on 31 interviews with open-ended questions, analysed using latent content analysis. Two themes represent the findings from the study: Expanding the concept of place and Developing networks. Even though participants still spent their days in the house, they experienced that daily life was being spent in a variety of places, both physically, virtually and emotionally. The Internet-based support service provided them with a tool to reconnect with family and develop new friends. Internet-based caregiver support may reduce the experience of isolation for spouse caregivers in rural areas. Nurses played a crucial part in the development, by encouraging, educating and inspiring caregivers and supporting their independence. Internet-based services ought to be an option for caregiver support in rural areas as it may reduce feelings of isolation for older spouse caregivers. © 2014 John Wiley & Sons Ltd.

Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers.

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Chan, Wallace Chi Ho; Chan, Christopher L F; Suen, Margaret

2013-11-01

Family caregivers may often experience caregiving stress and burden. To systematically assess this issue, medical social workers may need to use a brief and valid measurement in their practice. In the Hong Kong Chinese context, one additional challenge is to examine whether a measurement developed in the West is valid for Hong Kong Chinese caregivers. Thus, medical social workers in Hong Kong initiated this research study to validate the Chinese version of the Modified Caregiver Strain Index (C-M-CSI). A total of 223 Chinese caregivers of patients with various chronic illnesses were recruited for this validation study. C-M-CSI demonstrated good reliability (Cronbach's alpha coefficient = .91), concurrent validity with the Chinese version of the Caregiver Burden Inventory, and discriminant validity with the Chinese version of the Meaning in Life Questionnaire. Factor analysis yielded a single factor as the original M-CSI, which explained 49 percent of variance. Construct validity was shown by differentiating spousal and nonspousal caregivers, as well as caregivers of patients with and without behavioral problems. C-M-CSI is recommended as a brief and valid measurement that can be used by medical social workers in assessing the caregiving strain of Chinese caregivers of patients in Hong Kong.

Myocardial infarction: gender differences in coping and social support.

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Kristofferzon, Marja-Leena; Löfmark, Rurik; Carlsson, Marianne

2003-11-01

The aim of this review is to summarize current knowledge about gender differences in perceptions of coping and social support among patients who have experienced myocardial infarction. Women with coronary heart disease have physical, social and medical disadvantages compared with their male counterparts, which can influence their perception of recovery after cardiac events. No review has been found which focuses on gender differences in coping and social support in myocardial infarction patients. A computerized search was conducted using the keywords 'myocardial infarction', 'coping', 'gender differences' and 'social support'. Forty-one articles, published between 1990 and October 2002, were scrutinized. Two studies report that women used more coping strategies than men. Several qualitative studies found that women used a variety of coping strategies. Women minimized the impact of the disease, tended to delay in seeking treatment and did not want to bother others with their health problems. Household activities were important to them and aided their recovery. Men were more likely to involve their spouses in their recovery, and resuming work and keeping physically fit were important to them. Women tended to report that they had less social support up to 1 year after a myocardial infarction compared with men. They received less information about the disease and rehabilitation and experienced lack of belief in their heart problems from caregivers. Further, they received less assistance with household duties from informal caregivers. Men tended to report more support from their spouses than did women. Traditional gender-role patterns may influence the recovery of patients who have experienced myocardial infarction. Caregivers may need to be more sensitive to gender-specific needs with regard to risk profiles, social roles, and the patient's own role identity. For many women, especially older ones, household duties and family responsibilities may be an opportunity and a

Perception of human activities : a means to support connectedness between the elderly and their caregivers

NARCIS (Netherlands)

Davis, Kadian; Owusu, E.B.; Regazzoni, C.S.; Marcenaro, Lucio; Feijs, Loe; Hu, Jun; Holzinger, Andreas; Röcker, Carsten; Fred, Ana; Helfert, Markus; O'Donoghue, John; Ziefle, Martina

2015-01-01

This position paper describes a smart-phone based activity recognition system for improving social connectedness between caregivers and their elderly relatives. Sensing technologies can enable real-time monitoring to provide activity recognition in order to support health and safety among the

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

Science.gov (United States)

Milliken, Aimee; Mahoney, Ellen K; Mahoney, Kevin J; Mignosa, Kate; Rodriguez, Isabella; Cuchetti, Catherine; Inoue, Megumi

2018-05-17

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

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

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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.

The potential impact of intelligent power wheelchair use on social participation: perspectives of users, caregivers and clinicians.

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Rushton, Paula W; Kairy, Dahlia; Archambault, Philippe; Pituch, Evelina; Torkia, Caryne; El Fathi, Anas; Stone, Paula; Routhier, François; Forget, Robert; Pineau, Joelle; Gourdeau, Richard; Demers, Louise

2015-05-01

To explore power wheelchair users', caregivers' and clinicians' perspectives regarding the potential impact of intelligent power wheelchair use on social participation. Semi-structured interviews were conducted with power wheelchair users (n = 12), caregivers (n = 4) and clinicians (n = 12). An illustrative video was used to facilitate discussion. The transcribed interviews were analyzed using thematic analysis. Three main themes were identified based on the experiences of the power wheelchair users, caregivers and clinicians: (1) increased social participation opportunities, (2) changing how social participation is experienced and (3) decreased risk of accidents during social participation. Findings from this study suggest that an intelligent power wheelchair would enhance social participation in a variety of important ways, thereby providing support for continued design and development of this assistive technology. An intelligent power wheelchair has the potential to: Increase social participation opportunities by overcoming challenges associated with navigating through crowds and small spaces. Change how social participation is experienced through "normalizing" social interactions and decreasing the effort required to drive a power wheelchair. Decrease the risk of accidents during social participation by reducing the need for dangerous compensatory strategies and minimizing the impact of the physical environment.

Religious Involvement and Adaptation in Female Family Caregivers.

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

2016-03-01

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

Supporting home hospice family caregivers: Insights from different perspectives.

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Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F

2018-04-01

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Persona Development and Educational Needs to Support Informal Caregivers.

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Al Awar, Zeina; Kuziemsky, Craig

2017-01-01

Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.

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.

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.

Alzheimer's Caregiver Support Online: lessons learned, initial findings and future directions.

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Glueckauf, Robert L; Loomis, Jeffrey S

2003-01-01

Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are faced with a variety of emotional and behavioral difficulties, such as dealing with persistent, repetitive questions, managing agitation and depression, and monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, most dementia caregivers continue to receive little or no formal instruction in responding effectively to these challenges. The current paper describes the development and implementation of Alzheimer's Caregiver Support Online, a Web- and telephone-based education and support network for caregivers of individuals with progressive dementia. Lessons learned from the first two years of this state-supported initiative are discussed, followed by the findings of a Robert Wood Johnson Foundation-funded strategic marketing initiative and an initial program evaluation of AlzOnline's Positive Caregiving classes. Finally, clinical implications and future directions for program development and evaluation research are proposed.

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

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

2016-01-15

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

Support network and social support for children with special health care need

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Thaís Araújo Barbosa

2016-02-01

Full Text Available Objective: to understand and identify the support network and social support from the perspective of families of children with chronic conditions. Methods: a qualitative study, with content analysis of 134 records, followed by ten semi-structured interviews. Results: the analysis has revealed that the primary caregiver, the mother, participates in a network of limited support, only with the help of her husband, children, grandparents and the child´s godparents. They also have a social network through a multidisciplinary team, which in some cases is not effective. Conclusion: families have a deficient and limited support network and the demand for care rely only on the support of the husband, grandparents, children, and godparents. Social networking refers to the philanthropic institutions, while the aid of public service, basic health unit is basic.

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

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Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

2017-03-01

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

Burnout and reactions to social comparison information among volunteer caregivers

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Van der Zee, K.I.; Bakker, A.B.; Buunk, Abraham (Bram)

2001-01-01

The present study focused on social comparison processes among volunteer caregivers of terminally ill patients in relation to burnout. First, caregivers' (N = 80) affective reactions to a bogus interview with fellow volunteer workers who were either coping better or worse were considered. Upward

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.

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.

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

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Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

2012-01-01

Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

NARCIS (Netherlands)

Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

2012-01-01

OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

Nursing Support of Home Hospice Caregivers on the Day of Patient Death.

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Clayton, Margaret F; Hulett, Jennifer; Kaur, Kirandeep; Reblin, Maija; Wilson, Andrew; Ellington, Lee

2017-07-01

To describe nurse-caregiver communication on the day of patient death.
. A descriptive secondary analysis of 44 audio-recorded home hospice nursing visits on day of death.
. Nine hospices in Utah, Oregon, and Massachusetts.
. 42 caregiver-patient dyads, 27 hospice nurses.
. Transcripts of audio recordings were coded for supportive nursing communication and relative time spent in physical, psychosocial, and spiritual discussion.
. Tangible, emotional, informational, esteem, and networking supportive communication; nurses' self-reported communication effectiveness; caregiver religious affiliation.
. Nurses reported that their communication skills were less effective when discussing difficult topics as compared to their overall communication effectiveness. Eleven patients died before the nursing visit, 3 died during the visit, and 30 died post-visit. Nurses primarily engaged in discussions facilitating caregiver emotional, tangible, and informational support. More informational support was observed when patient death occurred during the nursing visit. Time spent in general conversation showed that physical care conversations predominated (80% of the average overall amount of conversation time), compared to lifestyle/psychosocial discussions (14%) and spiritual discussions (6%). Spiritual discussions were observed in only 7 of 44 hospice visits. Spiritual discussions, although short and infrequent, were significantly longer, on average, for caregivers without a religious affiliation.
. Nurses support caregivers on the day of patient death using multiple supportive communication strategies. Spiritual discussions are minimal.
. Communication skills programs can potentially increase self-reported communication effectiveness. Emerging acute spiritual concerns, particularly for caregivers without a previous religious affiliation, should be anticipated. Spiritual support is included in the hospice model of holistic care.

Knowledge, Attitudes and Practices of Caregivers of People with Disabilities in Processes of Social Inclusion in the Municipality Madrid, Cundinamarca

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Diana Camargo Rojas

2015-05-01

Full Text Available Introduction: The social inclusion of people with disabilities (PWD, dependent on many economic, social, political and cultural factors that affect their social development. One factor that generates greater social exclusion, corresponding to attitudinal barriers identified in the immediate environment. Objective: To identify knowledge, attitudes and practices of primary caregivers, about disability and care they provide to PcD linked to services Outpatient Gustavo Escallon Cayzedo of Santa Fe de Bogota Foundation (CAGEC, municipality of Madrid, Cundinamarca. Material and methods: Research with mixed approach, descriptive study aimed at caregivers of PcD, whom a semi-structured interview was applied. The quantitative analysis was performed using descriptive statistics and qualitative analysis was performed by generating an array of established and emerging categories. Results: economic and labor conditions affecting significantly the lives of caregivers, who spend more than 10 hours a day to care PcD, resulting in some symptoms of “caregiver syndrome” are evident. Most caregivers do not know the rights and duties of the population, and those who know they associate with the access to services. Participation is associated with assistance to certain activities, and not from his political notion. These skills relate to the practices of caregivers which are oriented on the biomedical model. Discussion: Being studied the conditions of the caregiver barriers, attitudes and support networks, observed how are you affecting your life project. Despite this, the activities of public and private entities are directed to the PcD, so the implementation of actions that promote the health of the caregiver is suggested.

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.

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.

Support groups for dementia caregivers - Predictors for utilisation and expected quality from a family caregiver's point of view: A questionnaire survey PART I*

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Luttenberger Katharina

2010-07-01

Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.

Social support as a protective factor for depression among women caring for children in HIV-endemic South Africa.

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

2015-02-01

Social support has been shown to be a protective resource for mental health among chronically ill adults and caregiver populations. However, to date no known studies have quantitatively explored the relationship between social support and depression among women caring for children in HIV-endemic Southern Africa, although they represent a high risk population for mental health conditions. Using data from a household survey with 2,199 adult female caregivers of children, living in two resource-deprived high HIV-prevalence South African communities, we conducted hierarchical logistic regression analysis with interaction terms to assess whether social support had a main effect or stress-buffering effect on depression. Findings provide evidence of stress-buffering of non-HIV-related chronic illness, but not HIV-related illness. Results reinforce the importance of social support for the mental health of chronically ill caregivers, and suggest that factors related to the specific nature of HIV/AIDS may be hindering the potential stress-buffering effects of social support among people living with the disease. Implications for future research and interventions are discussed.

Social relationships and social support among post-war youth in Northern Uganda.

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De Nutte, Leen; Okello, James; Derluyn, Ilse

2017-08-01

Although social relationships and social support are salient factors for post-war adolescents' psychosocial coping and adjustment, there is only limited information regarding war-affected adolescents' views on social support and the relationships within which social support is provided. This study therefore explored both elements among a clinical sample of 20 adolescents living in post-war Northern Uganda. Following Braun and Clarke's thematic analysis, we found a prominent role of the biological mother and other primary biological family members in the upbringing of our participants. Spiritual and material support were perceived to be the most important type of support, respectively, while the adolescents were growing up and in their current lives. These findings provide support for the perception that caregiving systems are adaptable to particular sociocultural contexts. Further, the importance of particular functions of social support could signify a potentially selective buffering effect of these functions in adverse contexts. Because of the importance of the primary biological family and the salient role of parent-child relationships in the face of adversity, future research needs to focus on this particular kind of social relationship in contexts of prolonged collective violence. © 2015 International Union of Psychological Science.

Stressors and Caregivers’ Depression: Multiple Mediators of Self-Efficacy, Social Support, and Problem-solving Skill

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

2015-01-01

Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem-solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simul...

Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

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Lara de Sa Neves Loureiro

2013-10-01

Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.

Traumatic brain injury: unmet support needs of caregivers and families in Florida.

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Christina Dillahunt-Aspillaga

Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

Reducing the distance in distance-caregiving by technology innovation

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Lazelle E Benefield

2007-07-01

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

Dementia caregivers' responses to 2 Internet-based intervention programs.

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Marziali, Elsa; Garcia, Linda J

2011-02-01

The aim of this study was to examine the impact on dementia caregivers' experienced stress and health status of 2 Internet-based intervention programs. Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group. Pre-post outcome measures focused on distress, health status, social support, and service utilization. In contrast to the Chat Group, the Video Group showed significantly greater improvement in mental health status. Also, for the Video Group, improvements in self-efficacy, neuroticism, and social support were associated with lower stress response to coping with the care recipient's cognitive impairment and decline in function. The results show that, of 2 Internet-based intervention programs for dementia caregivers, the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response.

Aspects of family caregiving as addressed in planned discussions between nurses, patients with chronic diseases and family caregivers: a qualitative content analysis.

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Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise

2017-01-01

Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital. Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital. Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness. Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approach in order to gain insight into addressed aspects of family caregiving. A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identified regarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients' social network, and included 'social network structure' and 'social network support'. One theme referred to aspects addressing coordination of care issues involving family caregiving, referred to as 'coordination of care'. During discussions nurses mostly addressed practical information on the patients' social network structure. When specific family caregiving support was addressed, information was limited and

Neighborhood Influences on Perceived Social Support Among Parents: Findings from the Project on Human Development in Chicago Neighborhoods

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Tendulkar, Shalini A.; Koenen, Karestan C.; Dunn, Erin C.; Buka, Stephen; Subramanian, S. V.

2012-01-01

Background Social support is frequently linked to positive parenting behavior. Similarly, studies increasingly show a link between neighborhood residential environment and positive parenting behavior. However, less is known about how the residential environment influences parental social support. To address this gap, we examine the relationship between neighborhood concentrated disadvantage and collective efficacy and the level and change in parental caregiver perceptions of non-familial social support. Methodology/Principal Findings The data for this study came from three data sources, the Project on Human Development in Chicago Neighborhoods (PHDCN) Study's Longitudinal Cohort Survey of caregivers and their offspring, a Community Survey of adult residents in these same neighborhoods and the 1990 Census. Social support is measured at Wave 1 and Wave 3 and neighborhood characteristics are measured at Wave 1. Multilevel linear regression models are fit. The results show that neighborhood collective efficacy is a significant (ß = .04; SE = .02; p = .03), predictor of the positive change in perceived social support over a 7 year period, however, not of the level of social support, adjusting for key compositional variables and neighborhood concentrated disadvantage. In contrast concentrated neighborhood disadvantage is not a significant predictor of either the level or change in social support. Conclusion Our finding suggests that neighborhood collective efficacy may be important for inducing the perception of support from friends in parental caregivers over time. PMID:22493683

Neighborhood influences on perceived social support among parents: findings from the project on human development in Chicago neighborhoods.

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Tendulkar, Shalini A; Koenen, Karestan C; Dunn, Erin C; Buka, Stephen; Subramanian, S V

2012-01-01

Social support is frequently linked to positive parenting behavior. Similarly, studies increasingly show a link between neighborhood residential environment and positive parenting behavior. However, less is known about how the residential environment influences parental social support. To address this gap, we examine the relationship between neighborhood concentrated disadvantage and collective efficacy and the level and change in parental caregiver perceptions of non-familial social support. The data for this study came from three data sources, the Project on Human Development in Chicago Neighborhoods (PHDCN) Study's Longitudinal Cohort Survey of caregivers and their offspring, a Community Survey of adult residents in these same neighborhoods and the 1990 Census. Social support is measured at Wave 1 and Wave 3 and neighborhood characteristics are measured at Wave 1. Multilevel linear regression models are fit. The results show that neighborhood collective efficacy is a significant (ß = .04; SE = .02; p = .03), predictor of the positive change in perceived social support over a 7 year period, however, not of the level of social support, adjusting for key compositional variables and neighborhood concentrated disadvantage. In contrast concentrated neighborhood disadvantage is not a significant predictor of either the level or change in social support. Our finding suggests that neighborhood collective efficacy may be important for inducing the perception of support from friends in parental caregivers over time.

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

Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder.

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Lerner, Debra; Chang, Hong; Rogers, William H; Benson, Carmela; Lyson, Mercedes C; Dixon, Lisa B

2018-02-01

The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

Assisting Toddlers and Caregivers during Conflict Resolutions: Interactions that Promote Socialization.

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Kovach, Beverly; Da Ros, Denise A.

1998-01-01

Examines caregiver attitudes toward toddler conflict and considers ways to facilitate conflict resolution to promote toddler growth, learning, and social development. Suggests that the ways caregivers intervene often do not promote resolution between children. Presents prevention and intervention strategies and discusses implications for practice…

Implementation of a Psychoeducational Program for Cancer Survivors and Family Caregivers at a Cancer Support Community Affiliate: A Pilot Effectiveness Study.

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Dockham, Bonnie; Schafenacker, Ann; Yoon, Hyojin; Ronis, David L; Kershaw, Trace; Titler, Marita; Northouse, Laurel

2016-01-01

Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them. This study examined the effectiveness of the FOCUS Program on cancer survivors' and their family caregivers' outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction. A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads' homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance. Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high. It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity. Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.

Issues Faced by Family Caregivers of Hospice Patients with Head and Neck Cancers.

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McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda

2015-01-01

The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.

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

African Journals Online (AJOL)

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

Neighborhood influences on perceived social support among parents: findings from the project on human development in Chicago neighborhoods.

Directory of Open Access Journals (Sweden)

Shalini A Tendulkar

Full Text Available BACKGROUND: Social support is frequently linked to positive parenting behavior. Similarly, studies increasingly show a link between neighborhood residential environment and positive parenting behavior. However, less is known about how the residential environment influences parental social support. To address this gap, we examine the relationship between neighborhood concentrated disadvantage and collective efficacy and the level and change in parental caregiver perceptions of non-familial social support. METHODOLOGY/PRINCIPAL FINDINGS: The data for this study came from three data sources, the Project on Human Development in Chicago Neighborhoods (PHDCN Study's Longitudinal Cohort Survey of caregivers and their offspring, a Community Survey of adult residents in these same neighborhoods and the 1990 Census. Social support is measured at Wave 1 and Wave 3 and neighborhood characteristics are measured at Wave 1. Multilevel linear regression models are fit. The results show that neighborhood collective efficacy is a significant (ß = .04; SE = .02; p = .03, predictor of the positive change in perceived social support over a 7 year period, however, not of the level of social support, adjusting for key compositional variables and neighborhood concentrated disadvantage. In contrast concentrated neighborhood disadvantage is not a significant predictor of either the level or change in social support. CONCLUSION: Our finding suggests that neighborhood collective efficacy may be important for inducing the perception of support from friends in parental caregivers over time.

A qualitative analysis of adolescent, caregiver, and clinician perceptions of the impact of migraines on adolescents' social functioning.

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Donovan, Elizabeth; Mehringer, Stacey; Zeltzer, Lonnie K

2013-12-01

Migraines dramatically affect adolescents' quality of life. One area of particular importance is the impact of migraines on adolescents' social functioning. To understand the impact of migraines on adolescents' social functioning from multiple informants, we performed semistructured interviews with adolescents who have migraines, their caregivers, and clinicians who treat adolescents who have migraines. Three major themes related to social functioning were identified from the adolescent interviews: The need to be alone; lack of support from siblings; and the feeling of not being understood by others. The caregiver interviews yielded three main themes related to family functioning: that plans can change quickly; that family life revolves around helping the child with the migraine; and parents' feelings of inadequacy in helping their child. There were two main themes derived from the clinician interviews related to perception of family functioning: the importance of parental involvement; and the role of adolescents' school and social lives in migraine prevention. There are a number of unmet needs among adolescents with recurrent migraine and their families. Interviews with adolescents, caregivers, and clinicians suggest a number of areas for intervention. Copyright © 2013 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

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

Accessible Support for Family Caregivers of Seniors with Chronic Conditions: From Isolation to Inclusion

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Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili

2006-01-01

Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family…

Family support and intergenerational caregiving: report from the State of the Science in Aging with Developmental Disabilities Conference.

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Heller, Tamar; Factor, Alan

2008-07-01

This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.

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

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

2014-01-01

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

Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.

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Davis, Lynne C; Sander, Angelle M; Struchen, Margaret A; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F

2009-01-01

To determine whether caregivers' medical and psychiatric histories, coping style, and social support predict global distress and perceived burden. Correlational, cohort study. A total of 114 caregivers of persons with moderate to severe traumatic brain injury, assessed 1 year postinjury. Ratings of caregivers' medical and psychiatric history; Disability Rating Scale; Ways of Coping Questionnaire; Multidimensional Scale of Perceived Social Support; Brief Symptom Inventory; and Modified Caregiver Appraisal Scale. Caregivers' medical and psychiatric histories predicted global distress, after accounting for education, sex, income, and relationship, as well as disability of the person with injury. Increased use of escape-avoidance as a coping strategy was related to increased distress. Perceived burden was predicted by disability in the person with injury, use of escape-avoidance, and perceived social support. Caregivers' preinjury functioning is more predictive of global distress, whereas the functioning of the person with injury is more predictive of injury-related burden. Caregivers' medical and psychiatric histories are important considerations when targeting interventions; global stress management strategies may be as important as assisting with injury-related issues.

Brief Report: Caregiver Strategy Implementation--Advancing Spoken Communication in Children Who Are Minimally Verbal

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Shire, Stephanie Y.; Shih, Wendy; Kasari, Connie

2018-01-01

Research has demonstrated that caregivers' use of intervention strategies can support their children's social engagement and communication. However, it is not clear to what degree caregivers must master the strategies to effectively support gains in social communication, specifically, core challenges such as joint attention language (comments).…

Gratitude and coping among familial caregivers of persons with dementia.

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Lau, Bobo Hi-Po; Cheng, Cecilia

2017-04-01

Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

Characteristics of the Social Support Networks of Maltreated Youth: Exploring the Effects of Maltreatment Experience and Foster Placement.

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Negriff, Sonya; James, Adam; Trickett, Penelope K

2015-08-01

Little is known about the social support networks of maltreated youth or how youth in foster care may compare with those who remain with their parent(s). Social network characteristics and perceived social support were examined between (1) maltreated and comparison youth, (2) maltreated youth who remained with their biological parent, those with a foster parent, or a those with a kin caregiver, and (3) youth in stable placements and those who have changed placements. Data came from a sample of 454 adolescents (241 boys, 9-13 years old at enrollment) who took part in a longitudinal study of child maltreatment. Participants completed three assessments approximately 1 year apart. Results showed that on average, maltreated adolescents named significantly fewer people in their network than comparison adolescents. At Time 2, comparison adolescents reported more same-aged friends. In the maltreatment group, youth with a foster parent reported significantly more older friends than maltreated youth with a kin caregiver. Fewer maltreated youth named a biological parent on the social support questionnaire at all three time points. More youth in kinship care described their caregiver as supportive than those in foster care. These findings indicate that despite heterogeneous placement histories, social support networks among maltreated youth were very similar.

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

Directory of Open Access Journals (Sweden)

Kenneth Ayuurebobi Ae-Ngibise

2015-05-01

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

Feelings of burden among family caregivers of people with spinal cord injury in Turkey.

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Secinti, E; Yavuz, H M; Selcuk, B

2017-08-01

The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

Traumatic brain injury: caregivers' problems and needs.

Science.gov (United States)

Hassan, S T S; Khaw, W F; Rosna, A R; Husna, J

2011-01-01

Traumatic brain injury (TBI) is an increasingly major world health problem. This short review using the most pertinent articles on TBI caregiving problems and needs highlights the pressing issues. Articles focusing on both TBI-caregivers' problems and needs are rarely found, especially for developing countries. Most TBI-caregiving is done by family members, whose altered lives portend burden and stresses which add to the overwhelming demand of caring for the TBI-survivor. Lack of information, financial inadequacy, anxiety, distress, coping deficits, poor adaptability, inadequate knowledge and skills, and a poor support system comprise the major problems. Dysfunctional communication between caregivers and care-receivers has been little researched. The major needs are focused on health and rehabilitation information, financial advice and assistance, emotional and social support, and positive psychological encouragement. In time, health information needs may be met, but not emotional support. Information on TBI caregiving problems and unmet needs is critical to all relevant healthcare stakeholders.

Social media use among patients and caregivers: a scoping review.

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Hamm, Michele P; Chisholm, Annabritt; Shulhan, Jocelyn; Milne, Andrea; Scott, Shannon D; Given, Lisa M; Hartling, Lisa

2013-05-09

To map the state of the existing literature evaluating the use of social media in patient and caregiver populations. Scoping review. Medline, CENTRAL, ERIC, PubMed, CINAHL Plus Full Text, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge and ProQuest (2000-2012). Studies reporting primary research on the use of social media (collaborative projects, blogs/microblogs, content communities, social networking sites, virtual worlds) by patients or caregivers. Two reviewers screened studies for eligibility; one reviewer extracted data from relevant studies and a second performed verification for accuracy and completeness on a 10% sample. Data were analysed to describe which social media tools are being used, by whom, for what purpose and how they are being evaluated. Two hundred eighty-four studies were included. Discussion forums were highly prevalent and constitute 66.6% of the sample. Social networking sites (14.8%) and blogs/microblogs (14.1%) were the next most commonly used tools. The intended purpose of the tool was to facilitate self-care in 77.1% of studies. While there were clusters of studies that focused on similar conditions (eg, lifestyle/weight loss (12.7%), cancer (11.3%)), there were no patterns in the objectives or tools used. A large proportion of the studies were descriptive (42.3%); however, there were also 48 (16.9%) randomised controlled trials (RCTs). Among the RCTs, 35.4% reported statistically significant results favouring the social media intervention being evaluated; however, 72.9% presented positive conclusions regarding the use of social media. There is an extensive body of literature examining the use of social media in patient and caregiver populations. Much of this work is descriptive; however, with such widespread use, evaluations of effectiveness are required. In studies that have examined effectiveness, positive conclusions are often reported, despite non

Examining spiritual support among African American and Caucasian Alzheimer's caregivers: A risk and resilience study.

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Wilks, Scott E; Spurlock, Wanda R; Brown, Sandra C; Teegen, Bettina C; Geiger, Jennifer R

2018-05-25

Research shows African Americans at greater risk of developing Alzheimer's disease (AD) compared to the Caucasian population, suggesting African American AD caregivers are rising in numbers at a greater rate than Caucasian counterparts. Over a decade ago, an article in Geriatric Nursing revealed spiritual well-being differences among these caregiver groups. The purpose of this study was a quasi-follow-up, utilizing a larger caregiver sample to test spiritual support as a moderator via a risk-and-resilience framework. Secondary data analysis from a sample of 691 AD caregivers examined data on demographics and standardized measures of spiritual support, caregiver burden, and psychological resilience. One-third of the sample reported as African American. Resilience negatively regressed, though not significantly, on caregiving burden among both groups. Spiritual support positively, significantly impacted resilience among both groups, slightly stronger among African Americans. Spiritual support did not significantly moderate risk with either group. Implications for professional healthcare practice are discussed. Copyright © 2018 Elsevier Inc. All rights reserved.

The impact of posttraumatic stress symptoms on social support and social conflict during hematopoietic stem cell transplant.

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Gerhart, James I; Asvat, Yasmin; Lillis, Teresa A; Fung, Henry; Grosse, Johanna; Hobfoll, Stevan E

2018-01-01

Social support and its relationship to psychological distress are of interest in hematopoietic stem cell transplant (HSCT) as patients are dependent on caregivers pre-, during, and posttransplant.  Although social support is critical for managing stress and trauma, posttraumatic stress symptoms (PTSS) may erode social support and evoke conflict and abandonment within the support system. This study aimed to evaluate whether PTSS were associated with lower support and social conflict in a sample of patients undergoing HSCT. Prospective relationships between PTSS, perceived social support, and social conflict were assessed in 88 participants across the first three months of HSCT (T0 Baseline; T1 +30; T2 +60; T3 +90). When individuals experienced increase above their own average levels of PTSS, they reported concurrent increase in social conflict (p social support in the following month (p = .026). Results suggest PTSS during stem cell transplantation may evoke social conflict, but over time, the support system may recalibrate to be more supportive. Patients undergoing HSCT may benefit from family and social-level interventions that specifically target the incidence of interpersonal conflict as it unfolds during the initial stages of HSCT.

Perceived social support disparities among children affected by HIV/AIDS in Ghana: a cross-sectional survey.

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Doku, Paul Narh; Dotse, John Enoch; Mensah, Kofi Akohene

2015-06-06

The study investigated whether perceived social support varied among children who have lost their parents to AIDS, those who have lost their parents to other causes, those who are living with HIV/AIDS-infected caregivers and children from intact families (comparison group). This study employed cross-sectional, quantitative survey that involved 291 children aged 10-18 years in the Lower Manya Krobo District of Ghana and examined their social support disparities. Multivariate linear regressions indicate that children living with HIV/AIDS-infected caregivers reported significantly lower levels of social support compared with AIDS-orphaned children, other-orphaned children and non-orphaned children independent of socio-demographic covariates. Children who have lost their parents to other causes and other-orphaned children reported similar levels of social support. In terms of sources of support, all children orphans and vulnerable children were more likely to draw support from friends and significant others rather than from the family. The findings indicate a need to develop interventions that can increase levels of social support for orphaned and vulnerable children within the context of HIV/AIDS in Ghana, particularly networks that include the family.

Stressors and Caregivers’ Depression: Multiple Mediators of Self-Efficacy, Social Support, and Problem-solving Skill

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

2016-01-01

Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem-solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss. PMID:26317766

[The system of informal caregiving as inequality].

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

2004-05-01

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

Online support and education for dementia caregivers: overview, utilization, and initial program evaluation.

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Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat

2004-01-01

Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.

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

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

2016-12-01

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

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

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Marsack, Christina N.; Samuel, Preethy S.

2017-01-01

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

Cancer patients and the provision of informational social support.

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Robinson, James D; Tian, Yan

2009-07-01

Research into the impact of social support on health-care patients has focused on the benefits of receiving social support. Although recipients benefit from social support, there are also potential benefits to the providers of social support that have gone relatively unexplored. The purpose of this investigation was to examine the relationship between the reception and provision of informational social support by cancer patients. Based on the work of Gouldner (1960), this investigation attempts to examine the role reciprocity plays within the social support process. The norm of reciprocity is conceptualized as a generalized moral belief rather than as a simple pattern of exchange between caregivers and care receivers. Use of reciprocity as a generalized moral belief instead of a pattern of behavioral exchange between providers and recipients of social support allows a more thorough integration theoretically and more methodical examination of the role the relationship between providers and recipients plays in this process. Specifically, this investigation employs the notion of optimal matching as part of the mechanism underlying the satisfactions derived from informational social support. The results of the logistic regression analyses suggest that reciprocity is a viable explanation of the mechanism underlying the desire to provide social support to others among cancer patients and among adults who have never been diagnosed with cancer. This relationship between the reception and the provision of informational social support remains even after controlling for age, education, gender, race, social integration, and cancer diagnosis. Implications for the social support literature are discussed.

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.

Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

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Paula W. Rushton PhD

2017-04-01

Full Text Available Objective: In this study, we aimed to describe the burden of family caregivers providing powered wheelchair-related and overall assistance and test the hypotheses that caregiver burden correlates with participation, wheelchair skills capacity, anxiety, depression, and social support. Methods: Cross-sectional study. Participants included 35 family caregivers of powered wheelchair users. Caregivers were assessed using the Power Mobility Caregiver Assistive Technology Outcome Measure, Late Life Disability Instrument, Wheelchair Skills Test Questionnaire for caregivers, Hospital Anxiety and Depression Scale, and Interpersonal Support Evaluation List–12. Results: The most burdensome powered wheelchair assistance items were providing verbal hints/directions, needing to be nearby, anxiety, and fear that user may be harmed. The most burdensome overall assistance item was feeling limited in recreational/leisure activities. Caregiver burden was significantly correlated with participation limitations, anxiety, depression, and social support. Discussion: Caregivers experience burden for wheelchair-related and overall help, especially psychological burden. Such results have implications for the type of resources required to support family caregivers.

Gender Differences in Caregiver Emotion Socialization of Low-Income Toddlers

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Chaplin, Tara M.; Casey, James; Sinha, Rajita; Mayes, Linda C.

2010-01-01

Low-income children are at elevated risk for emotion-related problems; however, little research has examined gender and emotion socialization in low-income families. The authors describe the ways in which emotion socialization may differ for low-income versus middle-income families. They also present empirical data on low-income caregivers'…

Exploring Peer Support Needs of Caregivers for Youth with Mental Illness or Addictions Concerns in Family Navigation Services.

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Markoulakis, R; Turner, M; Wicik, K; Weingust, S; Dobbin, K; Levitt, A

2017-11-16

Roles for peer support workers are increasingly recognized as a valuable component of mental health and addictions (MHA) services. In youth MHA care, caregivers are often closely involved in finding and accessing services and may also require support for themselves, yet caregiver peer support is not readily available in existing service delivery models. In order to understand the potential role and value of a caregiver peer support worker in a Family Navigation service, a descriptive qualitative study was conducted to explore the needs and potential value of a peer worker from caregiver client perspectives. Study findings indicate that a caregiver peer support worker can provide support for engaging in the caregiving role, utilize lived experience as a skill, and complement navigation support through lived experience. The discussion highlights implications for the implementation of a caregiver peer role at a family-focused service as well as implications for peer work within the MHA system.

Caregivers' burden in patients with COPD.

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

2015-01-01

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

Social media use among patients and caregivers: a scoping review

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Hamm, Michele P; Chisholm, Annabritt; Shulhan, Jocelyn; Milne, Andrea; Scott, Shannon D; Given, Lisa M; Hartling, Lisa

2013-01-01

Objective To map the state of the existing literature evaluating the use of social media in patient and caregiver populations. Design Scoping review. Data sources Medline, CENTRAL, ERIC, PubMed, CINAHL Plus Full Text, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge and ProQuest (2000–2012). Study selection Studies reporting primary research on the use of social media (collaborative projects, blogs/microblogs, content communities, social networking sites, virtual worlds) by patients or caregivers. Data extraction Two reviewers screened studies for eligibility; one reviewer extracted data from relevant studies and a second performed verification for accuracy and completeness on a 10% sample. Data were analysed to describe which social media tools are being used, by whom, for what purpose and how they are being evaluated. Results Two hundred eighty-four studies were included. Discussion forums were highly prevalent and constitute 66.6% of the sample. Social networking sites (14.8%) and blogs/microblogs (14.1%) were the next most commonly used tools. The intended purpose of the tool was to facilitate self-care in 77.1% of studies. While there were clusters of studies that focused on similar conditions (eg, lifestyle/weight loss (12.7%), cancer (11.3%)), there were no patterns in the objectives or tools used. A large proportion of the studies were descriptive (42.3%); however, there were also 48 (16.9%) randomised controlled trials (RCTs). Among the RCTs, 35.4% reported statistically significant results favouring the social media intervention being evaluated; however, 72.9% presented positive conclusions regarding the use of social media. Conclusions There is an extensive body of literature examining the use of social media in patient and caregiver populations. Much of this work is descriptive; however, with such widespread use, evaluations of effectiveness are required. In studies that have examined

Advice for Loved Ones and Caregivers

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... constitutes the most effective, supportive and beneficial care partnership for you both. ADDITIONAL RESOURCES FOR LOVED ONES AND CAREGIVERS Our community on social media has recommended the below resources. Aging Parents and ...

Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the Social Fitness Programme.

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Donkers, H W; van der Veen, D J; Vernooij-Dassen, M J; Nijhuis-van der Sanden, M W G; Graff, M J L

2017-12-01

We developed a tailor-made intervention aimed at improving social participation of people with cognitive problems and their caregivers. This programme consists of an integration of healthcare and welfare interventions: occupational therapy, physiotherapy and guidance by a welfare professional. This article describes the feasibility evaluation of this Social Fitness Programme. Feasibility in terms of acceptability, demand, implementation, practicability and limited efficacy was evaluated based on experiences from professionals (programme deliverers), people with cognitive problems and their caregivers (programme recipients). We used qualitative research methods (focus group discussions, interviews, collection of treatment records) and applied thematic analyses. The intervention was feasible according to stakeholders, and limited efficacy showed promising results. However, we found feasibility barriers. First, an acceptability barrier: discussing declined social participation was difficult, hindering recruitment. Second, a demand barrier: some people with cognitive problems lacked motivation to improve declined social participation, sometimes in contrast to their caregivers' wishes. Third, implementation and practicability barriers: shared decision-making, focusing the intervention and interdisciplinary collaboration between healthcare and welfare professionals were suboptimal during implementation. Although this intervention builds upon scientific evidence, expert opinions and stakeholder needs, implementation was challenging. Healthcare and welfare professionals need to overcome obstacles in their collaboration and focus on integrated intervention delivery. Also, they need to find ways to (empower caregivers to) motivate people with cognitive problems to participate socially. After modifying the intervention and additional training of professionals, a consecutive pilot study to assess feasibility of the research design and outcome measures is justified. Copyright �

The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death.

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Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha

2018-02-01

The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Social support is associated with blood pressure responses in parents caring for children with developmental disabilities.

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Gallagher, Stephen; Whiteley, Jenny

2012-01-01

The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls completed standard measures of perceived stress, child challenging behaviours and social support and wore an ambulatory blood pressure (BP) monitor throughout the day, for one day. Relative to controls, parents caring for children with developmental disabilities reported poorer psychosocial functioning and had a higher mean systolic BP. Of the psychosocial predictors, only social support was found to be predictive. Moreover, variations in social support accounted for some of the between group differences with the β for parental group attenuated from .42 to .34 in regression analyses. It appears that social support may influence blood pressure responses in parental caregivers. Finally, our findings underscore the importance of providing psychosocial interventions to improve the health of family caregivers. Copyright © 2012 Elsevier Ltd. All rights reserved.

Emotions, Ideas and Experiences of Caregivers of Patients With Schizophrenia About "Family to Family Support Program".

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Bademli, Kerime; Duman, Zekiye Çetinkaya

2016-06-01

"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.

Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration.

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Lefebvre, Hélène; Cloutier, Geneviève; Josée Levert, Marie

2008-07-01

Traumatic brain injury (TBI) has damaging impacts on victims and family members' lives and their long-term social integration constitutes a major challenge. The objective of the study was to document the repercussions of TBI on victims' long-term social integration (10 years post-trauma) and the contribution made by the services received from the point of view of TBI victims and family caregivers. This article examines the determinants of long-term social integration as well as the impact of TBI on family caregivers. A qualitative design was used (semi-directed interviews). The sample consisted of 22 individuals who had sustained a moderate or severe TBI and 21 family caregivers. The results show that TBI is an experience that continues to present difficulties, even 10 years after the accident, and that different barriers contribute to this difficulty: not going back to work, depressive episodes, problems in relationships and sequellae. Family caregivers must help TBI victims confront the barriers in their path. This study adopts a longitudinal perspective to help professionals determine how to intervene with TBI victims and their families. It validates the importance of having clients and family caregivers describe their reality.

Family Burden and Social Support in Mental Illness: A Comparative Study in Schizophrenia and Mood Disorders

OpenAIRE

JOSY KADAVIL THOMAS

2018-01-01

The present study was an attempt to assess and compare the global functioning of individuals affected with two major mental illnesses i.e. schizophrenia and mood disorders , social support perceived by them, and family burden and social support perceived by their caregivers. The individuals affected with schizophrenia were found to be more severely ill with a longer duration of illness, and perceived less social support as compared to those with mood disorders. The caregivers’ perceived socia...

Private prayer among Alzheimer's caregivers: mediating burden and resiliency.

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Wilks, Scott E; Vonk, M Elizabeth

2008-01-01

This study examined whether the coping method of private prayer served as a protective factor of resiliency among a sample (N = 304) of Alzheimer's caregivers. Participants in caregiver support groups completed questionnaires that assessed a number of constructs, including caregiving burden; prayer frequency; use of private prayer as a means of coping; and perceived resiliency. The sample averaged a moderate level of burden and a great extent of prayer usage. Caregiving burden had positively affected the extent of prayer usage and negatively influenced perceived resiliency. Findings from hierarchical regression analysis showed that caregiving burden and private prayer significantly influenced variation in perceived resiliency scores. Results from a regression equation series and path analysis provided support for prayer as a mediator between burden and perceived resiliency. Implications for social work practice and education are discussed.

Family caregivers in rural Uganda: the hidden reality.

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Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen

2007-01-01

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden, quality of life, and depression: A randomized controlled study.

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Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan

2016-10-01

Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.

Interventions for supporting informal caregivers of patients in the terminal phase of a disease.

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Candy, Bridget; Jones, Louise; Drake, Robyn; Leurent, Baptiste; King, Michael

2011-06-15

Patients in the terminal phase of a disease may have complex needs. It is often family and friends who play a central role in providing support, despite health professional input and regardless of whether the patient is at home or elsewhere. Such informal caring may involve considerable physical, psychological, and economic stresses. A range of supportive programmes for caregivers is being developed including psychological support and practical assistance. To assess the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness. We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 2 2010); MEDLINE (1950 to May 2010); EMBASE (1980 to May 2010); PsycINFO (1872 to May 2010); CINAHL (1937 to May 2010); National Health Service Research Register (2000 to November 2008) and Dissertation Abstracts (1716 to May 2010). We searched the reference lists of relevant studies; contacted experts; and handsearched journals. Randomised controlled trials (RCTs) of interventions to support adults who were caring for a friend or relative with a disease in the terminal phase. Interventions could include practical and emotional support and/or the facilitation of coping skills. Interventions could support caregivers indirectly via patient care. Two authors independently screened citations against the selection criteria. Data were extracted by one author and checked by another. This included extraction of any adverse effects. Risk of bias assessment was undertaken by two authors. We contacted trial authors to obtain missing information. Trial data were combined, where appropriate, on the review's primary outcomes. We included eleven RCTs involving 1836 caregiver participants. Nine interventions were delivered directly to the caregiver. Seven of these provided support in the caring role, another involved a family life review, and one

[Caregiving consequences in mental disorders--definitions and instruments of assessment].

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Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej

2010-01-01

Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.

Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries.

Science.gov (United States)

Willemse, Evi; Anthierens, Sibyl; Farfan-Portet, Maria Isabel; Schmitz, Olivier; Macq, Jean; Bastiaens, Hilde; Dilles, Tinne; Remmen, Roy

2016-07-16

Informal caregivers are essential figures for maintaining frail elderly at home. Providing informal care can affect the informal caregivers' physical and psychological health and labour market participation capabilities. They need support to prevent caregiver burden. A variety of existing support measures can help the caregiver care for the elderly at home, but with some limitations. The objective of this review was to explore the experiences of informal caregivers caring for elderly in the community with the use of supportive policy measures in Belgium and compare these to the experiences in other European countries. An empirical qualitative case study research was conducted in five European countries (Belgium, The Netherlands, Luxembourg, France and Germany). Semi-structured interviews were conducted with informal caregivers and their dependent elderly. Interview data from the different cases were analysed. In particular data from Belgium was compared to data from the cases abroad. Formal services (e.g. home care) were reported to have the largest impact on allowing the caregiver to care for the dependent elderly at home. One of the key issues in Belgium is the lack of timely access to reliable information about formal and informal services in order to proactively support the informal caregiver. Compared to the other countries, informal caregivers in Belgium expressed more difficulties in accessing support measures and navigating through the health system. In the other countries information seemed to be given more timely when home care was provided via care packages. To support the informal caregiver, who is the key person to support the frail elderly, fragmentation of information regarding supportive policy measures is an important issue of concern.

Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

Science.gov (United States)

Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

2013-11-01

We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

"Anonymous Meltdown": Content Themes Emerging in a Nonfacilitated, Peer-only, Unstructured, Asynchronous Online Support Group for Family Caregivers.

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

2017-12-01

By providing care for loved ones in the home, family caregivers save millions of dollars for our overtaxed healthcare system. Support groups can lighten the psychological burden of caregiving. Nonprofessionally facilitated (or peer) online caregiver support groups can help meet a critical need in healthcare as a low-cost resource for caregivers. Online caregiver peer support groups can promote the health and well-being of family caregivers and, by extension, the patients themselves, resulting in cost-savings for society. A better understanding of these types of groups is of critical importance, given the unrelenting pace of demographic shift in the United States. The purpose of this study was to examine content themes emerging from an unstructured, asynchronous online peer support group for family caregivers of people with chronic illness. Qualitative content analysis was used, yielding six themes: "experiencing the emotional toll," "need for catharsis/venting," "finding the silver linings," "seeking specific advice/problem solving," "realizing home is no longer a haven," and "adapting to the caregiver role." The themes reflect what emerged organically in an online support group that was not professionally facilitated or structured in any way. Heterogeneity in the relationship between caregivers and care recipients may negatively affect outcomes and requires further study.

Social Service Professionals' Perceptions of Nonoffending Caregivers in Child Sexual Abuse Cases

Science.gov (United States)

Wolfteich, Paula M.; Cline, Monica L.

2013-01-01

This study was designed to assess social service workers' perceptions of nonoffending caregivers in cases of child sexual abuse. Attributions of blame were examined by administering questionnaires to staff at local social service agencies. It was hypothesized that social service workers who worked in the field longer, were male, or had less…

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.

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.

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants.

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Dias, Rachel; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Nogueira, Marcela Moreira Lima; Torres, Bianca; Belfort, Tatiana; Dourado, Marcia Cristina Nascimento

2015-01-01

Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

Kenya’s Life Lessons through the Lived Experience of Rural Caregivers

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Amy Cappiccie

2017-11-01

Full Text Available This qualitative research study used a phenomenological lens to examine the perspectives of familial caregivers in the Laikipia Region of Kenya. Through the narrative of the caregivers’ lived experience, key factors identified included social supports, rewards of caregiving, and lessons to others. Overarching basic themes centered on food insecurity, disease, rejection, lack of support, education challenges, inadequate land ownership, the absence of male support and neglect issues. These unique perspectives can contribute towards our understanding of policy and programming needs for orphaned children and familial caregivers in rural Kenya and within the rural areas of the East African context.

Mental Health in Rural Caregivers of Persons With Dementia

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Alexandra J. Werntz

2015-12-01

Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.

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

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Casado, Banghwa; Sacco, Paul

2012-05-01

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

The experiences of family caregivers concerning their care of HIV ...

African Journals Online (AJOL)

Although government and non-government organisations have responded by ... most of Africa's orphans have been absorbed into extended family networks. ... social workers and home-based caregivers be trained on available social support.

Social capital, collective efficacy and the provision of social support services and amenities by municipalities in the Netherlands.

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Waverijn, Geeke; Groenewegen, Peter P; de Klerk, Mirjam

2017-03-01

Differential provision of local services and amenities has been proposed as a mechanism behind the relationship between social capital and health. The aim of this study was to investigate whether social capital and collective efficacy are related to the provision of social support services and amenities in Dutch municipalities, against a background of decentralisation of long-term care to municipalities. We used data on neighbourhood social capital, collective efficacy (the extent to which people are willing to work for the common good), and the provision of services and amenities in 2012. We included the services municipalities provide to support informal caregivers (e.g. respite care), individual services and support (e.g. domiciliary help), and general and collective services and amenities (e.g. lending point for wheelchairs). Data for social capital were collected between May 2011 and September 2012. Social capital was measured by focusing on contacts between neighbours. A social capital measure was estimated for 414 municipalities with ecometric measurements. A measure of collective efficacy was constructed based on information about the experienced responsibility for the liveability of the neighbourhood by residents in 2012, average charity collection returns in municipalities in 2012, voter turnout at the municipal elections in 2010 and the percentage of blood donors in 2012. We conducted Poisson regression and negative binomial regression to test our hypotheses. We found no relationship between social capital and the provision of services and amenities in municipalities. We found an interaction effect (coefficient = 3.11, 95% CI = 0.72-5.51, P = 0.011) of social capital and collective efficacy on the provision of support services for informal caregivers in rural municipalities. To gain more insight in the relationship between social capital and health, it will be important to study the relationship between social capital and differential provision of

Psychological aspects of caregivers associated with family support in the therapeutic adherence of diabetic patients

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Miriam Teresa Domínguez - Guedea

2010-03-01

Full Text Available Objective: To analyze the relationship of psychological aspects of family caregivers with the support that they offer to the diabetic patient’s adherence to treatment. The psychological aspects were: subjective well-being, attachment styles, coping strategies to problems and perceived social support. Methods: Joined in the study 29 family caregivers in a noneprobabilistic sample. Participants were contacted from three Mutual Aid Groups for diabetic and hypertensive patients in the city of Hermosillo, México. Questionnaires designed for the purposes of research were applied, as well as psychometric instruments previously validated in the cultural reference group. Results: The data showed that the psychological aspects that are statistically significant and negatively related to adherence therapy are avoidant attachment and negative affection, both associated to each other in a positive way, indicating that they occur in parallel. Avoidant attachment was positively associated with avoidant coping strategies and emotional disturbance, but negatively with secure attachment and material satisfaction. Negative affection were positively associated with emotional coping, but negatively with secure attachment and material satisfaction. Negative affect were positively associated with emotional confrontation, but negatively with positive affection, material satisfaction, emotional support and guidance support. Conclusions: More applied research in needed on the influence of family factors in achieving adherence to treatment, because so far, most work focuses more on the individual patient, disregarding the family factor.

Social hue : a subtle awareness system for connecting the elderly and their caregivers

NARCIS (Netherlands)

Davis, K.; Hu, Jun; Feijs, L.; Owusu, E.

2015-01-01

In this position paper, we propose an unobtrusive solution for improving bonding relations between the elderly and their caregivers, through the Social Hue. The Social Hue is a bidirectional application that is based on the Philips Hue light. To create social presence, activity and emotional states

Cancer Communication and Family Caregiver Quality of Life

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Elaine Wittenberg

2017-03-01

Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.

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

DEFF Research Database (Denmark)

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

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

Highly resilient coping entails better perceived health, high social support and low morning cortisol levels in parents of children with autism spectrum disorder.

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Ruiz-Robledillo, N; De Andrés-García, S; Pérez-Blasco, J; González-Bono, E; Moya-Albiol, L

2014-03-01

The negative consequences of caring for people with developmental disabilities have been widely described. However, the ability to bounce back from the stress derived from care situations has been less studied. Those caregivers who have shown this ability are considered as resilient. This study aims to evaluate the relationship between resilience and self-reported health and cortisol awakening response (CAR) in a sample of caregivers of people with autism spectrum disorders (ASD). It also aims to evaluate the role of social support as a mediator in the association between resilience and health. Caregivers with higher resilience show better perceived health, lower morning cortisol levels, and less area under the curve with respect to ground (AUCg). Social support was positively related to resilience and mediated the relationship between resilience and perceived health. This mediating effect was not found in the association between resilience and CAR. Resilience could be a protective factor that modulates the negative consequences of chronic stress in the care context. Social support could be an important variable mediating the effects of resilience on health outcomes in caregivers. All these results must be considered when implementing effective psychological programs for helping caregivers. Copyright © 2013 Elsevier Ltd. All rights reserved.

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

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

2016-03-01

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

Gender inequalities in care-giving in Canada.

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Dowler, J M; Jordan-Simpson, D A; Adams, O

1992-01-01

In Canada today, as in the past, men and women devote different amounts of time and effort to providing health care to their family and in the broader community. This paper examines "the social distinction between masculinity and femininity" in care-giving. Issues of gender inequality in care-giving have the potential to affect the formal health care system as the burden of caring will increase over the next few decades with the aging of society. This increase in need for care is occurring at a time when primary care providers--women--have additional demand on their time. Canadian society has been facing a series of social, demographic and economic shifts such as a higher divorce rate, two-income families, women's increasing professional commitments and first pregnancies at later ages, these factors may not affect women's willingness to care for others. However women may need support to provide the care. Assuming present trends, increasing need for families to care for elderly relatives may be inevitable. Perhaps society will recognize this need and provide support to those providing informal care. This could take the form of allowing individuals more time to provide care through child care leave, leave to care for parents and job-sharing. Support to those providing informal care might also be facilitated through community support services such as respite care, household maintenance, psychological support to care-givers, support groups, informal networks within a community and consideration of unconventional support methods.

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

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

2009-01-01

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

Social Support and Maternal Depression from Pregnancy to Postpartum: The Association with Positive Maternal Behaviours among Brazilian Adolescent Mothers

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Diniz, Eva; Koller, Sílvia H.; Volling, Brenda L.

2015-01-01

Adolescent motherhood is a risky situation related to poorer quality of infant caregiving. The lack of social support and increased odds for maternal depression are the main concerns. This study aimed to investigate whether maternal-foetal attachment, social support and maternal depression measured during pregnancy and after birth were associated…

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

DEFF Research Database (Denmark)

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

2015-01-01

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

Psychosocial impact of early onset dementia among caregivers.

Science.gov (United States)

Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

2015-01-01

There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

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

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Glaesser, Richard S; Patel, Bina R

2016-01-01

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

Psychometric evaluation of the shortened resilience scale among Alzheimer's caregivers.

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Wilks, Scott E

2008-01-01

The purpose of this study was to evaluate psychometric properties of the shortened Resilience Scale (15-item version RS15) among a sample of Alzheimer's caregivers. Self-reported data were collected from 229 participants at 2 Alzheimer's caregiver conferences. RS15 principal axis factoring indicated a single-dimensional solution with all items loaded. Reliability was strong. Convergent validity for the RS15 was suggested through its correlations with stress, family support, and friend support. Odds ratios showed significant likelihoods of high resilience given low stress and high social support. The results confirmed the RS15 to be a psychometrically sound measure that can be used to appraise the efficacy of adaptability among Alzheimer's caregivers.

Benefit finding and resilience in child caregivers.

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Cassidy, Tony; Giles, Melanie; McLaughlin, Marian

2014-09-01

A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. A survey design using questionnaire data collection was used with a sample of 442 children (174 boys and 268 girls) between the ages of 12 and 16. The role of benefit finding and resilience was explored within a stress and coping model of the impact of caregiving. Hierarchical multiple regression analysis (HMRA) identified resilience and benefit finding as accounting for significant amounts of variance in positive health and mediating the impact of caregiving. In regard to negative health, only benefit finding played a significant role. Young caregivers do experience benefit finding and exhibit resilience although the relationship with caregiving burden was inverse. Benefit finding seems to be related to social recognition of the caregiving role and to family support. What is already known on this subject? There is some emerging evidence that child caregivers experience some positive effects or benefits from their caring in spite of the demands of the role. However, the main focus has been on reducing negative outcomes rather than on building resilience. What this study adds? This study provides evidence that young caregivers do experience benefit finding in situations where the role demand is not overly excessive and where the role is socially recognized. © 2013 The British Psychological Society.

Social networks, social support, and burden in relationships, and mortality after breast cancer diagnosis in the Life After Breast Cancer Epidemiology (LACE) study.

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Kroenke, Candyce H; Quesenberry, Charles; Kwan, Marilyn L; Sweeney, Carol; Castillo, Adrienne; Caan, Bette J

2013-01-01

Larger social networks have been associated with lower breast cancer mortality. The authors evaluated how levels of social support and burden influenced this association. We included 2,264 women from the Life After Cancer Epidemiology study who were diagnosed with early-stage, invasive breast cancer between 1997 and 2000, and provided data on social networks (spouse or intimate partner, religious/social ties, volunteering, time socializing with friends, and number of first-degree female relatives), social support, and caregiving. 401 died during a median follow-up of 10.8 years follow-up with 215 from breast cancer. We used delayed entry Cox proportional hazards regression to evaluate associations. In multivariate-adjusted analyses, social isolation was unrelated to recurrence or breast cancer-specific mortality. However, socially isolated women had higher all-cause mortality (HR = 1.34, 95 % CI: 1.03-1.73) and mortality from other causes (HR = 1.79, 95 % CI: 1.19-2.68). Levels of social support and burden modified associations. Among those with low, but not high, levels of social support from friends and family, lack of religious/social participation (HR = 1.58, 95 % CI: 1.07-2.36, p = 0.02, p interaction = 0.01) and lack of volunteering (HR = 1.78, 95 % CI: 1.15-2.77, p = 0.01, p interaction = 0.01) predicted higher all-cause mortality. In cross-classification analyses, only women with both small networks and low levels of support (HR = 1.61, 95 % CI: 1.10-2.38) had a significantly higher risk of mortality than women with large networks and high levels of support; women with small networks and high levels of support had no higher risk of mortality (HR = 1.13, 95 % CI: 0.74-1.72). Social networks were also more important for caregivers versus noncaregivers. Larger social networks predicted better prognosis after breast cancer, but associations depended on the quality and burden of family relationships.

Assistance and Support of Primary Caregivers through an eService Platform

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Claudia I. Martínez-Alcalá

2018-02-01

Full Text Available The increasing human longevity around the world calls for new attention models in which the primary caregiver plays a crucial role as a source of care supply. However, primary caregivers’ lack of training, along with high levels of stress, depression and anxiety, can have a negative impact on both the caregiver’s health and the development of caregiving duties. Hence, the objective of the present article is to introduce the eCuidador platform, an innovative tool that seeks to provide assistance and support to primary caregivers by means of a variety of services available in the cloud with the aim of improving caregivers’ health and quality of life. Likewise, we present the results obtained from the pilot test validation, in which the evaluation of the following parameters was carried out: Usability (12, Functionality (10, Design (11, Usefulness (12 and Satisfaction (12. The participants of this pilot test were 12 primary caregivers (91.66% women.

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

Science.gov (United States)

Giger, Jarod T; Markward, Martha

2011-01-01

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

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants

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Rachel Dias

2015-03-01

Full Text Available Introduction: Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience.Objective: This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia.Methods: Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia.Results and conclusions: Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

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

Science.gov (United States)

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.

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...

Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities

Directory of Open Access Journals (Sweden)

R C Jiloha

2016-01-01

Full Text Available Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different in urban and rural settings along with different caregivers profile. This review will highlight these differences in light of their overall characteristics, and health seeking behavior. This further calls for empowering caregivers, understanding and exploring new dimensions of caregiving, and implementing holistic intervention for patients as well as caregiver′s well-being.

How Do Family Caregivers Describe Their Needs for Professional Help?

Science.gov (United States)

Yedidia, Michael J.; Tiedemann, Amy

2008-01-01

How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…

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

Science.gov (United States)

Werner, Shirli; Shulman, Cory

2013-11-01

Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers' internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers' self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities. Copyright © 2013 Elsevier Ltd. All rights reserved.

Comparison of caregiver strain in Parkinson's disease between Yamagata, Japan, and Maryland, The United States.

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Tanji, Haruko; Koyama, Shingo; Wada, Manabu; Kawanami, Toru; Kurita, Keiji; Tamiya, Gen; Saito, Naohiro; Suzuki, Kyoko; Kato, Takeo; Anderson, Karen E; Gruber-Baldini, Ann L; Fishman, Paul S; Reich, Stephen G; Weiner, William J; Shulman, Lisa M

2013-06-01

Japan and the United States (US) have different cultures of caregiving including differences in family structure and social programs that may influence caregiver strain. Differences in caregiver strain between regions in Japan and in the US have not been investigated in patient-spouse dyads in PD. To compare caregiver strain in spouses of PD patients between Yamagata, Japan and Maryland, US. Correlations between caregiver strain and patient/spousal variables are also examined. In Yamagata and Maryland, spouses of patients with PD completed questionnaires assessing caregiver strain. Patients and spouses completed scales assessing mental health, and medical co-morbidity. PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Schwab and England Activities of Daily Living Scale. Results in the two regions were compared with Chi-square and Student's t-tests. Relationships between caregiver strain and patient/spousal variables were analyzed with univariate correlations and multivariate regression. 178 Spouse-patient pairs were assessed. The level of caregiver strain in PD did not differ between Yamagata, Japan and Maryland, US despite differences in demographics and social support programs in the two regions. Yamagata spouses reported physical, time and financial constraints, while Maryland spouses reported more emotional distress. In both regions, spousal depression was a significant contributor to caregiver strain. Different approaches to reduce caregiver strain will likely be necessary in Yamagata and Maryland since the contributing factors to caregiver strain are influenced by differences in culture and social supports in each country. Copyright © 2013 Elsevier Ltd. All rights reserved.

Rural women caregivers in Canada.

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Crosato, Kay E; Leipert, Beverly

2006-01-01

Informal caregiving within rural contexts in Canada is increasing. This is due in part to a number of factors related to the restructuring of the Canadian health care system, the regionalization of services to urban locations, the increased population of people 65 years and older, and the desire of this population to age within their rural homes. Most often, the informal caregiving role is assumed by rural women. Women tend to fall into the role of informal caregiver to elders because of the many societal and gender expectations and values that are present within the rural culture. The purpose of this literature review is to identify the context in which women provide care for an elder in rural Canada. Illustrating these issues will help to uncover challenges and barriers rural women face when providing care and highlight recommendations and implications for rural women caregivers and nurses employed within rural settings. Many rural women share similar caregiving experiences as urban informal caregivers, but rural women are faced with additional challenges in providing quality care for an elder. Rural women caregivers are faced with such issues as limited access to adequate and appropriate healthcare services, culturally incongruent health care, geographical distance from regionalized centers and health services, transportation challenges, and social/geographical isolation. In addition to these issues, many rural women are faced with the multiple role demands that attend being a wife, mother, caregiver and employee. The pile up of these factors leaves rural women caregivers susceptible to additional stresses and burn out, with limited resources on which to depend. Through reviewing pertinent literature, appropriate implications and recommendations can be made that may assist rural women caregivers and rural nurses. Nurses working within rural communities are in ideal settings to work collaboratively in building supportive relationships with rural women in order to

Actor and partner effects of perceived HIV stigma on social network components among people living with HIV/AIDS and their caregivers.

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Hao, Chun; Liu, Hongjie

2015-06-01

Few studies have investigated the relationship between HIV stigma and social network components at the dyadic level. The objective of this study was to examine the actor and partner effects of perceived HIV stigma by people living with HIV/AIDS (PLWHAs) and their caregivers on social network variables at the dyadic level. An egocentric social network study was conducted among 147 dyads consisting of one PLWHA and one caregiver (294 participants) in Nanning, China. The actor-partner interdependence model (APIM) was used to analyze the relationships between perceived HIV stigma and social network components (network relations, network structures, and network functions) at the dyadic level. We found in this dyadic analysis that: (1) social network components were similar between PLWHAs and their caregivers; (2) HIV stigma perceived by PLWHAs influenced their own social network components, whereas this influence did not exist between caregivers' perceived HIV stigma and their own social network components; (3) a few significant partner effects were observed between HIV stigma and social network components among both PLWHAs and caregivers. The interrelationships between HIV stigma and social network components were complex at the dyadic level. Future interventions programs targeting HIV stigma should focus on the interpersonal relationship at the dyadic level, beyond the intrapersonal factors. © The Author(s) 2014.

Do Maternal Caregiver Perceptions of Childhood Obesity Risk Factors and Obesity Complications Predict Support for Prevention Initiatives Among African Americans?

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Alexander, Dayna S; Alfonso, Moya L; Cao, Chunhua; Wright, Alesha R

2017-07-01

Objectives African American maternal caregiver support for prevention of childhood obesity may be a factor in implementing, monitoring, and sustaining children's positive health behaviors. However, little is known about how perceptions of childhood obesity risk factors and health complications influence caregivers' support of childhood obesity prevention strategies. The objective of this study was to determine if childhood obesity risk factors and health complications were associated with maternal caregivers' support for prevention initiatives. Methods A convenience sample of maternal caregivers (N = 129, ages 22-65 years) completed the childhood obesity perceptions (COP) survey. A linear regression was conducted to determine whether perceptions about childhood obesity risk factors and subsequent health complications influenced caregivers' support for prevention strategies. Results Caregivers' perceptions of childhood obesity risk factors were moderate (M = 3.4; SD = 0.64), as were their perceptions of obesity-related health complications (M = 3.3; SD = 0.75); however, they perceived a high level of support for prevention strategies (M = 4.2; SD = 0.74). In the regression model, only health complications were significantly associated with caregiver support (β = 0.348; p obesity prevention efforts should emphasize health complications by providing education and strategies that promote self-efficacy and outcome expectations among maternal caregivers.

Psychosocial impact of early onset dementia among caregivers

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Nathália R. S. Kimura

2015-12-01

Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

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

OpenAIRE

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

2014-01-01

Background: 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. Objectives: 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 relat...

The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder

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Carolyn Dudley

2016-01-01

Full Text Available WHY IS THIS AN IMPORTANT ISSUE? An estimated 1 in 86 children are diagnosed with Autism Spectrum Disorder (ASD1 making it the most commonly diagnosed childhood neurological condition in Canada.2 The true costs of lifelong support for people living with ASD3 are often underestimated and fail to acknowledge the value of caregiver time over the lifespan. Significant gaps in publically provided support systems leave the cost burden to be picked up by families. Relying on continued family supports where community services are fragmented or unavailable is not a sustainable approach. WHAT DOES THE RESEARCH TELL US? A continuum of supports are needed Most people living with ASD need supports that range from occasional assistance with higher level tasks, like organizing appointments or banking, to those who need continuous help with daily living.4 Areas where supportive care may be needed can be categorized broadly to include: self care, home living, service co-ordination, personal organization, health and safety management, adult day opportunities/employment, transportation, advocacy and social skills. These supports are most successful when they address the individual’s uniqueness in terms of communication, social, sensory, behavioural needs and physical and/or mental health conditions. Currently there are a lack of available supports, limiting opportunities for socialization, employment and residential living resulting in reduced independence for adults with ASD.

Spousal Perceptions of Marital Stress and Support among Grandparent Caregivers: Variations by Life Stage

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Matzek, Amanda E.; Cooney, Teresa M.

2009-01-01

Few studies have examined how raising grandchildren influences the marital relationship of grandparent caregivers although half of such caregivers are married. This study used national survey data from Midlife Development in the United States (MIDUS) to contrast perceptions of spousal support and strain for grandparents who had recently provided…

Protective Factors against Distress for Caregivers of a Child with Autism Spectrum Disorder

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Lindsey, Rebecca A.; Barry, Tammy D.

2018-01-01

Caregivers of a child with autism spectrum disorder (ASD) often experience elevated distress. The current study examined potential protective factors against caregiver distress when child externalizing and internalizing behaviors are present: family resources, perceived social support, parenting efficacy, knowledge of ASD, and the agreement…

Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers.

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Pereira, Beatriz Dos Santos; Fernandes, Neimar da Silva; de Melo, Nayara Pires; Abrita, Renata; Grincenkov, Fabiane Rossi Dos Santos; Fernandes, Natália Maria da Silva

2017-04-17

Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers. This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed. Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the

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.

PA26 Unmet needs and stress among caregivers of bedridden stroke patients in north kerala - a community based study.

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Usha, K

2015-04-01

In developing countries informal care by an unpaid relative is the most prevalent form of long-term care. Being bedridden consumes the victim and the caregiver physically, psychologically, socially and financially. In developing countries, strengthening support for family caregivers is essential to sustain long term health care system. Therefore unmet needs and burdens of family caregivers, including inadequate training, respite, and access to support programs should be studied and addressed. To study unmet needs of caregivers of stroke patients in the home settings. To study physical, psychological and social stress of these caregivers. Descriptive Study setting: Four rural panchayats, where home based care is given to bed ridden patients by the palliative team of our medical college. Sampling design: Convenience sampling study population: Care givers of bedridden stroke patients tool: A semi structured questionnaire Forty caregivers participated in the study. Their mean age was 51 years. Most were wives (15, 37.5%) and daughters (14, 35%). All belonged to low socioeconomic class. Unmet needs were lack of recreation (67%), inadequate sleep (67%), total responsibility (65%), illnesses (53%) and insufficient money (67%). Severe to moderate physical, psychological and social stress was seen in 90%, 87.5% and 70% of caregivers respectively. Services to be aimed primarily at informal caregivers may be designed to increase the level of knowledge and emotional support of caregivers, provide respite, or provide financial benefits as social schemes. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

The impact of foreign caregiving on depression among older people in Taiwan: model testing.

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Chiao, Chia-Yi; Schepp, Karen G

2012-05-01

  This article is a report of a study of predicting the factors that influence depression in the older people in Taiwan. Background.  In 1991, Taiwan opened the labour market to foreign caregivers for the older people who needed long-term care. With the differences in language, culture and lifestyle between foreign caregivers and older people in Taiwan, it was hypothesized that the older people would not be able to relate to them, and therefore become depressed.   The data were collected from 116 Taiwanese older people from July to September, 2005. Path analysis using multiple regression analyses was conducted to estimate the direct and indirect effects of caregiving communication, activities of daily living, income and social support on depression among older people in Taiwan. To evaluate the hypotheses for this research, bi-variate linear regression and multiple regression analyses were used.   The results indicated that the level of activities of daily living (β = -0·201, P = 0·010), care-giving communication (β = -0·272, P = 0·002) income (β = -0·305, P = 0·000) and social support (β = -0·276, P = 0·002) were the predictors of depression in older people in Taiwan. Social support was a mediating factor for caregiving communication and depression. Furthermore, foreign caregiver care was not correlated with depression among older people in Taiwan.   The findings influence the public awareness of depression in older people, and provide the foundational information to influence the policy makers of Taiwan to evaluate the foreign caregiver policy. © 2011 The Authors. Journal of Advanced Nursing © 2011 Blackwell Publishing Ltd.

Parent Perceptions of Family Social Supports in Families With Children With Epilepsy.

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Decker, Kim A; Miller, Wendy R; Buelow, Janice M

2016-12-01

When a child is diagnosed with epilepsy, not only has the child's life been disrupted but also the family's sense of normalcy. Although there is considerable literature discussing family concerns and social support issues in families with chronically ill children, a major gap lies in the exploration of how the specifics of childhood epilepsy affect parents and family operations. The purpose of this study was to identify psychosocial care needs of parents of children with epilepsy. Utilizing the Family Systems Nursing theory as a framework, this correlation study examined the relationships among social and community support, family needs, family empowerment, and family quality of life in 29 primary caregivers of a child with epilepsy. These families felt highly supported; they had low needs and high perceptions of empowerment. There was a negative association between social supports and the total family needs survey scale and the subscales of financial support, help regarding explaining to others, and professional support. There was no association between family empowerment or quality of life with parental perceptions of social support. In general, as parental perceptions of family needs increased, perceptions of familial social supports decreased. Further research is recommended to investigate varying socioeconomic status effects in families with children with pediatric epilepsy.

Stress and Quality of Life in Urban Caregivers of Children With Poorly Controlled Asthma: A Longitudinal Analysis.

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Bellin, Melissa H; Osteen, Philip; Kub, Joan; Bollinger, Mary E; Tsoukleris, Mona; Chaikind, Laurie; Butz, Arlene M

2015-01-01

The intent of this analysis was to examine the longitudinal effects of risk and protective factors on quality of life (QOL) in caregivers of minority children with asthma. Caregivers (n = 300) reported on demographics, child asthma characteristics, daily asthma caregiving stress, general life stress, social support, and QOL. Latent growth curve modeling examined changes in QOL across 12 months as a function of stress, asthma control, and social support. Caregivers were primarily the biological mother (92%), single (71%), unemployed (55%), and living in poverty. Children were African American (96%), Medicaid eligible (92%), and had poorly controlled asthma (93%). Lower QOL was associated with higher life stress, greater asthma caregiving stress, and lower asthma control over time. Findings underscore the importance of assessing objective and subjective measures of asthma burden and daily life stress in clinical encounters with urban, low-income caregivers of children with poorly controlled asthma. Copyright © 2015 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

When LVAD Patients Die: The Caregiver's Mourning.

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Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

2016-05-01

Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.

Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis

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Shepherd-Banigan, Megan; Smith, Valerie A.; Stechuchak, Karen M.; Miller, Katherine E. M.; Hastings, Susan Nicole; Wieland, Gilbert Darryl; Olsen, Maren K.; Kabat, Margaret; Henius, Jennifer; Campbell-Kotler, Margaret; Van Houtven, Courtney Harold

2018-01-01

Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions. PMID:29591540

Similarities amid the difference: caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy.

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

2013-03-01

This study had two main objectives: first, to examine the direct and indirect effects, via social support, of caregiving burden on the adaptation outcomes of children/adolescents with cerebral palsy and their parents; and second, to assess the invariance of such models in clinical vs. healthy subsamples. Participants were 210 dyads of children/adolescents and one of their parents (total N=420), divided in 93 dyads of children/adolescents with cerebral palsy and 117 dyads of children/adolescents with no medical diagnosis. Data on caregiving burden, social support and adaptation outcomes were obtained through self-report questionnaires. Caregiving burden was linked to parents and their children's psychological maladjustment and quality of life both directly (except for children's quality of life) and indirectly through social support. Findings were invariant across clinical and healthy subsamples. Caregiving burden may influence adaptation outcomes of children/adolescents with CP and their parents both directly and via their social support perceptions. These patterns are similar to those observed in typically developing children/adolescents. Copyright © 2012 Elsevier Ltd. All rights reserved.

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…

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.

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.

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.

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.

Caregivers' requirements for in-home robotic agent for supporting community-living elderly subjects with cognitive impairment.

Science.gov (United States)

Faucounau, Véronique; Wu, Ya-Huei; Boulay, Mélodie; Maestrutti, Marina; Rigaud, Anne-Sophie

2009-01-01

Older people are an important and growing sector of the population. This demographic change raises the profile of frailty and disability within the world's population. In such conditions, many old people need aides to perform daily activities. Most of the support is given by family members who are now a new target in the therapeutic approach. With advances in technology, robotics becomes increasingly important as a means of supporting older people at home. In order to ensure appropriate technology, 30 caregivers filled out a self-administered questionnaire including questions on needs to support their proxy and requirements concerning the robotic agent's functions and modes of action. This paper points out the functions to be integrated into the robot in order to support caregivers in the care of their proxy. The results also show that caregivers have a positive attitude towards robotic agents.

A Systematic Review of Psychosocial Interventions to Cancer Caregivers

Directory of Open Access Journals (Sweden)

Fang Fu

2017-05-01

Full Text Available Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers.Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA, Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI and EBSCO, China National Knowledge Infrastructure (CNKI and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs; psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety.Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT, cognitive behavioral therapy (CBT, emotion-focused therapy (EFT, comprehensive health enhancement support system (CHESS, FOCUS programme, existential behavioral therapy (EBT, telephone interpersonal counseling (TIP-C, problem-solving intervention (COPE.Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.

Everyday life and social relations in home-living patients with mild Alzheimer's disease and their caregivers: Quantitative and qualitative analyses

DEFF Research Database (Denmark)

Sørensen, Lisbeth Villemoes

2007-01-01

and the presence of neuropsychiatric symptoms. In the second study, data were collected using semi-structured research interviews with 11 patients before their participation in the DAISY intervention programme. Grounded theory analysis of the interview data revealed that the basic social psychological problem...... with the changes they face in relation to everyday life and social relations; and 3) to identify and analyse the experience of patients and their spousal caregivers concerning the impact of an intensive psychosocial intervention programme with tailored counselling, education courses and support groups, conducted...

Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy.

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Dorant, Elisabeth; Krieger, Theresia

2017-11-28

Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

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

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Sandeep Grover

2016-01-01

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

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

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

Informing social work practice through research with parent caregivers of a child with a life-limiting illness.

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Cadell, Susan; Kennedy, Kimberly; Hemsworth, David

2012-01-01

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.

Veterans' informal caregivers in the "sandwich generation": a systematic review toward a resilience model.

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Smith-Osborne, Alexa; Felderhoff, Brandi

2014-01-01

Social work theory advanced the formulation of the construct of the sandwich generation to apply to the emerging generational cohort of caregivers, most often middle-aged women, who were caring for maturing children and aging parents simultaneously. This systematic review extends that focus by synthesizing the literature on sandwich generation caregivers for the general aging population with dementia and for veterans with dementia and polytrauma. It develops potential protective mechanisms based on empirical literature to support an intervention resilience model for social work practitioners. This theoretical model addresses adaptive coping of sandwich- generation families facing ongoing challenges related to caregiving demands.

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.

Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme

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Spreeuwenberg Peter MM

2010-06-01

Full Text Available Abstract Background This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO and the Knowledge Centre on Ageing (Vilans, instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia. Methods In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly and support needs on the other hand. Results Almost all informal caregivers (92.6% received some professional support. However, two thirds (67.4% indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law: spouses relatively often need emotional support and sons or daughters (in-law more often need information and coordination of dementia care. Conclusions Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with

The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer.

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Bahrami, Masoud; Farzi, Saba

2014-03-01

social domain of quality of life in the two groups. In the experimental group, the mean score of caring burden among the caregivers was significantly decreased compared to the control group. Results of the present study suggested that a supportive educational program can improve physical, mental, spiritual, environmental domains and overall quality of life. It can also decrease the caring burden in the family caregivers of women with breast cancer. Further studies are needed to evaluate the impact of these interventions on quality of life and caring burden in the family caregivers of women with breast cancer undergoing other cancer treatments.

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.

Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the Social Fitness Programme

NARCIS (Netherlands)

Donkers, H.W.; Veen, D.J. van der; Vernooij-Dassen, M.J.F.J.; Sanden, M.W. van der; Graff, M.J.L.

2017-01-01

OBJECTIVE: We developed a tailor-made intervention aimed at improving social participation of people with cognitive problems and their caregivers. This programme consists of an integration of healthcare and welfare interventions: occupational therapy, physiotherapy and guidance by a welfare

See and be seen: Infant-caregiver social looking during locomotor free play.

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Franchak, John M; Kretch, Kari S; Adolph, Karen E

2017-10-26

Face-to-face interaction between infants and their caregivers is a mainstay of developmental research. However, common laboratory paradigms for studying dyadic interaction oversimplify the act of looking at the partner's face by seating infants and caregivers face to face in stationary positions. In less constrained conditions when both partners are freely mobile, infants and caregivers must move their heads and bodies to look at each other. We hypothesized that face looking and mutual gaze for each member of the dyad would decrease with increased motor costs of looking. To test this hypothesis, 12-month-old crawling and walking infants and their parents wore head-mounted eye trackers to record eye movements of each member of the dyad during locomotor free play in a large toy-filled playroom. Findings revealed that increased motor costs decreased face looking and mutual gaze: Each partner looked less at the other's face when their own posture or the other's posture required more motor effort to gain visual access to the other's face. Caregivers mirrored infants' posture by spending more time down on the ground when infants were prone, perhaps to facilitate face looking. Infants looked more at toys than at their caregiver's face, but caregivers looked at their infant's face and at toys in equal amounts. Furthermore, infants looked less at toys and faces compared to studies that used stationary tasks, suggesting that the attentional demands differ in an unconstrained locomotor task. Taken together, findings indicate that ever-changing motor constraints affect real-life social looking. © 2017 John Wiley & Sons Ltd.

A remote care platform for the social support program CASSAUDEC

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Andrés Felipe Ardila Rodríguez

2016-06-01

Full Text Available The training strategies developed for the social support program bring deficits in accessibility to the chronic ill patients (EC and the CASSA-UDEC’s caretaker (CASSA-UDEC: Centre for Social Health Care at Universidad de Cundinamarca they do not have time to commute, hindering their legal relationship established by the contract. For this reason, a remote care platform (PTD was developed to support users at CASSA-UDEC improving aspects related to coverage, cost, quality, access and appropriation of information from caregivers and chronic ill patients. The design was based on gerontological constructs identifying features such as modularity, object size, usability, ergonomics, and some others, providing a friendly platform for the user with dynamic, modular and high usability content. The Platform provides a space for interaction and aid, which works as a dynamic entity in the job done by CASSA-UDEC giving support in the development of activities, expanding its coverage, access; all thanks to the benefits offered in a virtual mode.

Perceptions, attitudes and experiences of family caregivers of patients with musculoskeletal diseases: a qualitative approach.

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Alfaro, Noelia; Lázaro, Pablo; Gabriele, Giovanna; Garcia-Vicuña, Rosario; Jover, Juan Ángel; Sevilla, Jordi

2013-01-01

To determine the perceptions, attitudes and experiences among family caregivers of patients with musculoskeletal diseases (MSD). Descriptive, exploratory, qualitative study. Two discussion groups were organized with family caregivers of MSD patients, representing the caregiver profile: gender (men/women) and age (31-45 years/46-65 years); and patient profiles: MSD type (rheumatoid arthritis/ankylosing spondylitis), work status (yes or no for the variables housewife, at least 3 episodes of sick leave, patients who abandoned their work, and patients with permanent work disability). A content analysis based on the Grounded Theory was done to detect and explore emerging categories. The emerging dimensions were: alterations in daily life activities, need for caregiver support, physical and psychological impact on the caregiver, characteristics of the patient, and several aspects of care. Relevant experiences mentioned were: the diagnosis of a MSD changes the patient and their family members' life affecting work, financial, social, psychological and physical spheres, making it necessary help for basic activities of daily living. Early age at onset or severe MSDs require dedication and effort on the part of caregivers which increases with time. This leads to a great emotional overload on the caregivers, which may be modulated by the support they receive when providing care. The primary consequences for caregivers are loss of purchasing power, work problems, social isolation and emotional stress. Programs for effective at-home support need to be developed with streamlined administrative processes to quickly classify the level of disability and provide official assistance. Copyright © 2012 Elsevier España, S.L. All rights reserved.

Caregiver burden in Alzheimer's disease patients in Spain.

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Peña-Longobardo, Luz María; Oliva-Moreno, Juan

2015-01-01

Alzheimer's disease constitutes one of the leading causes of burden of disease, and it is the third leading disease in terms of economic and social costs. To analyze the burden and problems borne by informal caregivers of patients who suffer from Alzheimer's disease in Spain. We used the Survey on Disabilities, Autonomy and Dependency to obtain information on the characteristics of disabled people with Alzheimer's disease and the individuals who provide them with personal care. Additionally, statistical multivariate analyses using probit models were performed to analyze the burden placed on caregivers in terms of health, professional, and leisure/social aspects. 46% of informal caregivers suffered from health-related problems as a result of providing care, 90% had leisure-related problems, and 75% of caregivers under 65 years old admitted to suffering from problems related to their professional lives. The probability of a problem arising for an informal caregiver was positively associated with the degree of dependency of the person cared for. In the case of caring for a greatly dependent person, the probability of suffering from health-related problems was 22% higher, the probability of professional problems was 18% higher, and there was a 10% greater probability of suffering from leisure-related problems compared to non-dependents. The results show a part of the large hidden cost for society in terms of problems related to the burden lessened by the caregivers. This information should be a useful tool for designing policies focused toward supporting caregivers and improving their welfare.

Caregiving in first-episode psychosis: social characteristics associated with perceived 'burden' and associations with compulsory treatment.

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Boydell, Jane; Onwumere, Juliana; Dutta, Rina; Bhavsar, Vishal; Hill, Nathan; Morgan, Craig; Dazzan, Paola; Morgan, Kevin; Pararajan, Madonna; Kuipers, Elizabeth; Jones, Peter; Murray, Robin; Fearon, Paul

2014-05-01

High incidence of psychosis and compulsory treatment within black and minority ethnic (BME) groups in the UK remain a concern. Psychosis has an impact on families and family involvement is important in predicting compulsory treatment. We therefore aimed to report the levels and predictors of caregiver burden in first-episode psychosis, in white British, and BME groups of carers, and investigate their relevance to compulsory treatment. A total of 124 caregivers were interviewed soon after the onset of psychosis using the General Health Questionnaire, GHQ-28, the Experience of Caregiving Inventory, the Personal and Psychiatric History Schedule, and the MRC Sociodemographic Schedule. The overall level of distress as measured by GHQ-28 was high (mean 50, SD 11.4). Feelings of carer burden were also high (mean total negative score 72.5, SD 34.8), increased in men, and with carer age. Neither ethnicity nor social class nor social support was associated with distress or burden. Compulsory treatment was predicted by carer burden (as indicated by carer reports of 'problems with services' (OR 1.08; 95% CI 1.01, 1.15; P = 0.023)); this was particularly evident in the black Caribbean group of carers (OR 1.28; 95% CI 1.04, 1.57; P = 0.02) CONCLUSION: Carers of adults with first-episode psychosis experience considerable psychological distress and feelings of burden. There was a specific association between carer burden, specifically in terms of experience of services, and compulsory admission of service users, particularly in the black Caribbean group. Better ways of liaising with carers and targeted efforts to reduce carer burden at illness onset are needed. © 2013 Wiley Publishing Asia Pty Ltd.

Interpersonal Conflicts Among Family Caregivers of the Elderly: The Importance of Social Skills

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Francine Náthalie Ferraresi Rodrigues Pinto

2016-08-01

Full Text Available Abstract Caring for someone, even when this person is highly regarded, can be stressful, resulting in a decrease in the caregiver's quality of life. The aim of this study was to identify the main conflicts involved in the task of caring for an elderly relative, reported by caregivers, elderly care-recipients and professionals in the field of aging, and to identify social skills (SS considered as being important to accomplish this task, helping to minimize the conflicts in this context. We interviewed 50 caregivers of the elderly, 25 elderly care-recipients, and 25 professionals in the field of aging, who answered questions about conflicts linked to this context and about SS that are important when taking care of an elderly person. The main conflicts involved difficulties to reconcile differences of opinion, or financial issues. The SSs considered most useful included: expressing positive feelings, controlling aggressiveness, and discussing problems. It will be important to verify if caregivers who develop their SS repertoire also improve their quality of life.

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

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Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla

2018-01-01

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions

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

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

2017-06-16

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

Enhanced Psychosocial Support for Caregiver Burden for Patients With Chronic Kidney Failure Choosing Not to Be Treated by Dialysis or Transplantation: A Pilot Randomized Controlled Trial.

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Chan, Kwok Ying; Yip, Terence; Yap, Desmond Y H; Sham, Mau Kwong; Wong, Yim Chi; Lau, Vikki Wai Kee; Li, Cho Wing; Cheng, Benjamin Hon Wai; Lo, Wai Kei; Chan, Tak Mao

2016-04-01

Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. Open-label randomized controlled trial. All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. The study is limited by a relatively small sample size and short duration. Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety. Copyright © 2016 National Kidney

Memory and communication support in dementia: research-based strategies for caregivers.

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Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J

2011-03-01

Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions.

Science.gov (United States)

Corry, Margarita; While, Alison; Neenan, Kathleen; Smith, Valerie

2015-04-01

To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. The electronic databases of PubMed, CINAHL, British Nursing Index, PsycINFO, Social Science Index (January 1990-May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R-AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. © 2014 John Wiley & Sons Ltd.

Beyond stroke : Description and evaluation of an effective intervention to support family caregivers of stroke patients

NARCIS (Netherlands)

Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty

Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den

Children with medical complexity: a scoping review of interventions to support caregiver stress.

Science.gov (United States)

Edelstein, H; Schippke, J; Sheffe, S; Kingsnorth, S

2017-05-01

Caring for children with chronic and complex medical needs places extraordinary stress on parents and other family members. A scoping review was undertaken to identify and describe the full range of current interventions for reducing caregiver stress. Applying a broad definition of caregiver stress, a systematic search of three scientific databases (CINAHL, Embase and Ovid Medline), a general internet search and hand searching of key peer-reviewed articles were conducted. Inclusion criteria were as follows: (i) published in English between 2004-2016; (ii) focused on familial caregivers, defined as parents, siblings or extended family; (iii) targeted children/youth with medical complexity between the ages of 1-24 years; and (iv) described an intervention and impact on caregiver stress. Data on type of intervention, study design and methods, measures and overall findings were extracted. Forty-nine studies were included from a list of 22 339 unique titles. Six domains of interventions were found: care coordination models (n = 23); respite care (n = 8); telemedicine (n = 5); peer and emotional support (n = 6); insurance and employment benefits (n = 4); and health and related supports (n = 3). Across studies, there was a wide variety of designs, outcomes and measures used. Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple

Comparison of quality of life of Turkish cancer patients and their family caregivers.

Science.gov (United States)

Yesilbalkan, Oznur Usta; Ozkutuk, Nilay; Ardahan, Melek

2010-01-01

The purpose of this study was to compare the quality of life (QoL) of cancer patients and their family caregivers and determine associations. A total of 93 paired patients and caregivers from an outpatient chemotherapy unit of the oncology units were recruited at a large university hospital in İzmir, all completing the Quality of Life Scale (QoLS). The mean age of patients was 45.2 years, and of their family caregivers was 40.5. The results indicated that the patients perceived a poorer quality of life than their family caregivers. There was a middle and positive correlation between the social participation and work performance dimensions of patients' QoL and social participation and work performance dimension of family caregivers' QoL (r =0.273, p 0.05). Caregivers' employment status was found to have an affect on their quality of life (p ommunication skills, financial planning and distress management skills and be given spiritual support to decrease effects of cancer on their quality of life.

What do multiple sclerosis patients and their caregivers perceive as unmet needs?

Science.gov (United States)

Lorefice, Lorena; Mura, Gioia; Coni, Giulia; Fenu, Giuseppe; Sardu, Claudia; Frau, Jessica; Coghe, Giancarlo; Melis, Marta; Marrosu, Maria Giovanna; Cocco, Eleonora

2013-11-15

Multiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients. We evaluated what MS patients and caregivers perceive as unmet needs and compared patients' opinions with caregivers' opinions using a multidimensional questionnaire. The questionnaire was specifically designed for the study, taking into account different aspects of the global care perceived by patients and care givers, such as information about MS, medical treatment and rehabilitation, patients' relationships with medical staff and their psychological and social life. We administered the questionnaire to 497 patients and 206 caregivers. Results showed that the majority of participants were satisfied with medical staff but expressed a desire that staff be more forthcoming with information about MS. As for medical treatment concerns, more patients found there to be useful a multidisciplinary approach than caregivers did. Both required psychological support for patients but patients felt a greater need for it at the time of diagnosis, whereas caregivers felt it was required post-diagnosis. Both reported significant strains on patient relationships at work but no effect on other social interactions. A better understanding of MS patient needs, starting from the point of view of patients and caregivers, could have a great impact on quality of life and on management of the disease.

Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description.

Science.gov (United States)

Auer, Stefanie R; Span, Edith; Reisberg, Barry

2015-07-01

Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. © The Author(s) 2013.

Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

Science.gov (United States)

Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

2016-09-01

The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.

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

Science.gov (United States)

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

2017-08-01

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

Effects of the teach-model-coach-review instructional approach on caregiver use of language support strategies and children's expressive language skills.

Science.gov (United States)

Roberts, Megan Y; Kaiser, Ann P; Wolfe, Cathy E; Bryant, Julie D; Spidalieri, Alexandria M

2014-10-01

In this study, the authors examined the effects of the Teach-Model-Coach-Review instructional approach on caregivers' use of four enhanced milieu teaching (EMT) language support strategies and on their children's use of expressive language. Four caregiver-child dyads participated in a single-subject, multiple-baseline study. Children were between 24 and 42 months of age and had language impairment. Interventionists used the Teach-Model-Coach-Review instructional approach to teach caregivers to use matched turns, expansions, time delays, and milieu teaching prompts during 24 individualized clinic sessions. Caregiver use of each EMT language support strategy and child use of communication targets were the dependent variables. The caregivers demonstrated increases in their use of each EMT language support strategy after instruction. Generalization and maintenance of strategy use to the home was limited, indicating that teaching across routines is necessary to achieve maximal outcomes. All children demonstrated gains in their use of communication targets and in their performance on norm-referenced measures of language. The results indicate that the Teach-Model-Coach-Review instructional approach resulted in increased use of EMT language support strategies by caregivers. Caregiver use of these strategies was associated with positive changes in child language skills.

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

Directory of Open Access Journals (Sweden)

Charles D. Phillips

2016-01-01

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

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

Science.gov (United States)

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…

[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 CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer.

Science.gov (United States)

Minaya, Patricia; Baumstarck, Karine; Berbis, Julie; Goncalves, Anthony; Barlesi, Fabrice; Michel, Gérard; Salas, Sébastien; Chinot, Olivier; Grob, Jean-Jacques; Seitz, Jean François; Bladou, Franck; Clement, Audrey; Mancini, Julien; Simeoni, Marie-Claude; Auquier, Pascal

2012-04-01

The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers. A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory. The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach's alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient's characteristics. Reproducibility and sensitivity to change were found satisfactory. The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients' QoL which are key-actors in the provision of health care. Copyright © 2011 Elsevier Ltd. All rights reserved.

[Effects of Home Care Services Use by Older Adults on Family Caregiver Distress].

Science.gov (United States)

Kim, Jiyeon; Kim, Hongsoo

2016-12-01

The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.

Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis.

Science.gov (United States)

Kobiske, Karie R; Bekhet, Abir K

2018-05-01

Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Concept analysis. Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD.

Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'.

Science.gov (United States)

Donovan, Rhonda; Williams, Allison M

2015-01-01

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture. © 2014 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.

Caregiver coping with the mentally ill: a qualitative study.

Science.gov (United States)

Azman, Azlinda; Jamir Singh, Paramjit Singh; Sulaiman, Jamalludin

2017-04-01

Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members. This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members. A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview. The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members. Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers' coping skills.

Influence of Emotional Support Exchange in Marriage on Caregiving Wives' Burden and Marital Satisfaction.

Science.gov (United States)

Wright, Debra L.; Aquilino, William S.

1998-01-01

Interrelationships among elderly couples' reciprocity of emotional support, wives' experience of caregiving for husbands with disabilities, and wives' marital happiness are explored. Level of functioning and type of disability, and levels of exchange of emotional support were measured. Regression models are presented and relationships among…

Parental Adjustment to Disability, Stress Indicators and the Influence of Social Support

OpenAIRE

Felizardo, Sara; Ribeiro, Esperança; Amante, Maria João

2016-01-01

Research into families of children and young people with disability maintain that parents or caregivers seem to experience higher levels of global stress than parents of children without disabilities, thereby presenting a high risk of developing disorders in their health and quality of life. The aim of this study is to understand the differences in parental stress and social support among groups of parents whose children have different disabilities in the context of parental adjustment to dis...

Communication differences when patients and caregivers are seen separately or together.

Science.gov (United States)

Swetenham, Kate; Tieman, Jennifer; Butow, Phyllis; Currow, David

2015-11-01

Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated. A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians. Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.

Children and Caregivers' Exposure to Adverse Childhood Experiences (ACES): Association with Children's and Caregivers' Psychological Outcomes in a Therapeutic Preschool Program.

Science.gov (United States)

Ziv, Yair; Sofri, Inbar; Capps Umphlet, Kristen L; Olarte, Stephanie; Venza, Jimmy

2018-03-31

Exposure to adverse childhood experiences (ACE) has been found to have a profound negative impact on multiple child outcomes, including academic achievement, social cognition patterns, and behavioral adjustment. However, these links have yet to be examined in preschool children that are already experiencing behavior or social-emotional problems. Thus, the present study examined the links between the caregiver's and the child's exposure to ACE and multiple child and caregiver's outcomes in a sample of 30 preschool children enrolled in a Therapeutic Nursery Program (TNP). Children are typically referred to this TNP due to significant delays in their social emotional development that often result in difficulty functioning in typical childcare, home, and community settings. Analyses revealed some contradictory patterns that may be specific to this clinical sample. Children with higher exposure to ACE showed more biased social information processing patterns and their caregivers reported lower child social skills than caregivers of children with less exposure, however their inhibitory control levels were higher (better control) and staff reported that these children exhibited better social skills as well as better approaches to learning than children with less exposure. No such contradictions were found in relation to the caregiver's exposure to ACE, as it was positively associated with a number of negative child and caregiver outcomes.

Review of informal care. Discovering the primary caregiver

Directory of Open Access Journals (Sweden)

María Pilar Catalán Edo

2012-03-01

Full Text Available Introduction. The concept of informal care is complex and multidimensional. Caring involves tasks, relationships, feelings and costs. Women socialization as family welfare providers become them into “health agents” but not “health subjects”. Method. A cross-sectional study regarding the informal care situation during the last decade was performed. The profile of the caregiver and how this role had influenced in his the quality of life was analyzed. Several searches were performed at the following electronic databases: Cochrane Plus, Pubmed, OSM, ODS, RISG, IMSERSO, using the following terms: Gender identity, caregivers, inequality, and home care services. 40 articles were included. Results. The primary caregiver profile is a middle-aged woman, housewife, with low education level and ties of kinship with the person who is cared. It is the daughter who mostly takes this role, followed by the spouse. They perceive that their life is conditioned by this task. Care activity has important health implications for people who perform it, pointing out the negative impact on psychological health, which causes stress and anxiety and overload. Social support is directly related to psychological welfare, and it affects positively to their quality of life. Caring causes positive effects on the caregiver but they are rarely studied. Discussion. The landscape of care in the last ten years has changed a little. Formal services’ is minority. Studies focused exclusively on female caregivers generate biased information.

Exploration the Supportive Needs and Coping Behaviors of Daughter and Daughter in-Law Caregivers of Stroke Survivors, Shiraz-Iran: A Qualitative Content Analysis.

Science.gov (United States)

Gholamzadeh, Sakineh; Tengku Aizan, Hamid; Sharif, Farkhondeh; Hamidon, Basri; Rahimah, Ibrahim

2015-07-01

The period of hospital stay and the first month after discharge have been found to be the most problematic stages for family caregivers of stroke survivors. It is just at home that patients and caregivers actually understand the whole consequences of the stroke. The adult offspring often have more different needs and concerns than spousal caregivers. However, relatively little attention has been paid to the needs of this particular group of caregivers. Therefore, this qualitative content analysis study aimed to explore the supportive needs and coping behaviors of daughter and daughter in-law caregivers (DILs) of stroke survivors one month after the patient's discharge from the hospital in Shiraz, Southern of Iran. This is a qualitative content analysis study using semi-structured and in-depth interviews with a purposive sampling of seventeen daughter and daughter in-law caregivers. The data revealed seven major themes including information and training, financial support, home health care assistance need, self-care support need, adjusting with the cultural obligation in providing care for a parent in-law, and need for improving quality of hospital care. Also, data from the interview showed that daughter and daughter in-law caregivers mostly used emotional-oriented coping strategies, specially religiosity, to cope with their needs and problems in their care-giving role. The results of this qualitative study revealed that family caregivers have several unmet needs in their care-giving role. By providing individualized information and support, we can prepare these family caregivers to better cope with the home care needs of stroke survivors and regain control over aspects of life.

Contribution of family social support to the metabolic control of people with diabetes mellitus: A randomized controlled clinical trial.

Science.gov (United States)

Gomes, Lilian Cristiane; Coelho, Anna Claudia Martins; Gomides, Danielle Dos Santos; Foss-Freitas, Maria Cristina; Foss, Milton César; Pace, Ana Emilia

2017-08-01

This randomized controlled clinical trial aimed to evaluate the contribution of family social support to the clinical/metabolic control of people with type 2 diabetes mellitus. Diabetes mellitus is a chronic disease that requires continuous care in order for individuals to reach glycemic control, the primordial goal of treatment. Family social support is essential to the development of care skills and their maintenance. However, there are few studies that investigate the contribution of family social support to diabetes control. The study was developed between June 2011 and May 2013, and included 164 people who were randomized using simple randomization. The intervention group differed from the control group in that it included a family caregiver, who was recognized by the patient as a source of social support. The educational interventions received by people with diabetes mellitus were used as the basis of the education provided through telephone calls to patients' family members and caregivers, and their purpose was to encourage dialogue between the patients and their relatives about the topics related to diabetes. Regarding the clinical impact, the results showed that there was a greater reduction in blood pressure and glycated hemoglobin in the intervention group than in the control group, showing a positive effect on the control of the disease. Families should be incorporated into the care of people with diabetes mellitus and especially in health care programs, in particular those that can promote different forms of social support to strengthen the bond between family members. Copyright © 2017 Elsevier Inc. All rights reserved.

Maternal Caregiving Moderates the Relation between Temperamental Fear and Social Behavior with Peers

Science.gov (United States)

Penela, Elizabeth C.; Henderson, Heather A.; Hane, Amie A.; Ghera, Melissa M.; Fox, Nathan A.

2012-01-01

Temperament works in combination with a child's environment to influence early socioemotional development. We examined whether maternal caregiving behavior at infant age 9 months moderated the relation between infant temperamental fear (9 months) and observations of children's social behavior with an unfamiliar peer at age 2 in a typically…

Coping Strategies and Depression in Caregivers of Patients with ...

African Journals Online (AJOL)

Caregivers of mental patients are assumed to be of sound mental health to be ... to patients who were receiving psychological treatments for mental disorders in ... the levels of depression and anxiety and their relationship with coping strategies. ... Further investigation on the role of social support and other environmental ...

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

Science.gov (United States)

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.

Gender and socio-economic inequalities in health and living conditions among co-resident informal caregivers: a nationwide survey in Spain.

Science.gov (United States)

Abajo, María; Rodríguez-Sanz, Maica; Malmusi, Davide; Salvador, María; Borrell, Carme

2017-03-01

To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers. The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care. Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain. Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men. The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems. The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers. © 2016 John Wiley & Sons Ltd.

Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review.

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Ge, Lixia; Mordiffi, Siti Zubaidah

Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.

Predictors of dementia caregiver depressive symptoms in a population: the Cache County dementia progression study.

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Piercy, Kathleen W; Fauth, Elizabeth B; Norton, Maria C; Pfister, Roxane; Corcoran, Chris D; Rabins, Peter V; Lyketsos, Constantine; Tschanz, JoAnn T

2013-11-01

Previous research has consistently reported elevated rates of depressive symptoms in dementia caregivers, but mostly with convenience samples. This study examined rates and correlates of depression at the baseline visit of a population sample of dementia caregivers (N = 256). Using a modified version of Williams (Williams, I. C. [2005]. Emotional health of black and white dementia caregivers: A contextual examination. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 60, P287-P295) ecological contextual model, we examined 5 contexts that have contributed to dementia caregiver depression. A series of linear regressions were performed to determine correlates of depression. Rates of depressive symptoms were lower than those reported in most convenience studies. We found fewer depressive symptoms in caregivers with higher levels of education and larger social support networks, fewer health problems, greater likelihood of using problem-focused coping, and less likelihood of wishful thinking and with fewer behavioral disturbances in the persons with dementia. These results suggest that depression may be less prevalent in populations of dementia caregivers than in clinic-based samples, but that the correlates of depression are similar for both population and convenience samples. Interventions targeting individuals with small support networks, emotion-focused coping styles, poorer health, low quality of life, and those caring for persons with higher numbers of behavioral problems need development and testing.

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.

Predictors of Desire to Institutionalization in Dementia Caregivers From a Developing Country.

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Sinha, Preeti; Yohannan, Sherin; Thirumoorthy, A; Sivakumar, Palanimuthu Thangaraju

2017-08-01

Older adults with dementia have higher rates of institutionalization than those without dementia. Desire to institutionalization (DTI) is an important factor influencing the actual institutionalization but is less well studied. This cross-sectional study examines the DTI with the scale of same name developed by Morycz, in 1985, in a sample of 50 caregivers of patients with dementia in a tertiary clinical care setting in a developing country. Caregiver burden associated with personal strain (by factor analyzed Zarit Burden Interview scale), and stress perceived out of caregiving (by Perceived Stress Scale) predicted higher DTI. Besides, those who were married had lower DTI scores. The factors which didn't affect DTI were total caregiver burden, family and social support, age of patient and caregiver, education of caregiver, severity and duration of dementia, and treatment duration. These results were different from those of developed country-based DTI studies and may indicate sociocultural differences.

Family Caregivers of Adults with Intellectual and Developmental Disabilities: Outcomes Associated with U.S. Services and Supports

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Williamson, Heather J.; Perkins, Elizabeth A.

2014-01-01

Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…

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

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

2007-12-01

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

Female caregivers and stroke severity determines caregiver stress in stroke patients

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Bindu Menon

2017-01-01

Full Text Available Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] 75 according to patient's BI, according to gender (male and female CG and relation; spouses (wife, husband, daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws. Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62% were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002 than males (χ2 = 11.931, P = 0.018; wives and daughters than other relations (χ2 = 32.184, P = 0.000, (χ2 = 35.162, P = 0.019. Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic

The relationships between depression and other outcomes of chronic illness caregiving

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Jirovec Mary M

2005-02-01

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

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.

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

Needs of caregivers of cancer patients: validation of the Mexican version of the Support Person Unmet Needs Survey (SPUNS-SFM).

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Doubova, Svetlana V; Aguirre-Hernandez, Rebeca; Infante-Castañeda, Claudia; Martinez-Vega, Ingrid; Pérez-Cuevas, Ricardo

2015-10-01

The purpose of this study was to validate the Mexican version of the Support Person Unmet Needs Survey (SPUNS-SFM). A cross-sectional survey that included 826 primary caregivers of cancer patients was conducted from June to December 2013 at the Oncology Hospital of the Mexican Institute of Social Security in Mexico City. The validation procedure comprised (1) content validity through a group of experts; (2) construct validity through an exploratory factor analysis based on the polychoric correlation matrix; (3) internal consistency using Cronbach's alpha; (4) convergent validity between SPUNS-SFM and quality of life, anxiety-and-depression scales by calculating Spearman's rank correlation coefficient;( 5) discriminative validity through the Wilcoxon rank-sum test; and (6) test-retest reliability using intraclass correlation coefficient. SPUNS-SFM has 23 items with six factors accounting for 65 % of the total variance. The domains were concerns about the future, access and continuity of healthcare, information, work and finance, and personal and emotional needs. Cronbach's alpha values ranged from 0.70 to 0.88 among factors. SPUNS-SFM had moderate convergent validity compared with quality of life and depression-and-anxiety scales and good discriminative validity, revealing high needs for younger caregivers and more emotional needs for caregivers of patients with advanced cancer stages. Intraclass correlation coefficient between SPUNS-SFM measurements was 0.78. SPUNS-SFM is a valid and reliable tool to identify needs of caregivers of cancer patients.

Clinical and Demographic Variables Associated Coping and the Burden of Caregivers of Schizophrenia Patients.

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Mora-Castañeda, Belvy; Márquez-González, María; Fernández-Liria, Alberto; de la Espriella, Ricardo; Torres, Néstor; Arenas Borrero, Álvaro

To analyse of the relationship between burden of illness and coping strategies and the demographic variables of caregivers, and the demographic and clinical variables of people diagnosed with schizophrenia. Multicentre correlational cross-sectional study including 70 people diagnosed with schizophrenia, or a schizoaffective disorder, and 70 primary informal caregivers. They were evaluated using Zarit Caregiver Burden Inventory, Family Coping Strategies Questionnaire, Scale for the Assessment of Positive Symptoms, Scale for the Assessment of Negative Symptoms, and the brief Disability Assessment Scale. Burden of illness positively associated with patient impairment in occupational and social functioning, and negatively with education level. Avoidance, coercion and positive communication were positively associated with impairment in occupational and social functioning of patients. Social interest and friendships showed a positive association with the education level of caregivers. Spiritual assistance negatively correlated with impairment in social functioning and patient age, and resignation was negatively associated with length of the disorder and patient education level. Burden and dysfunctional coping strategies, such as avoidance and coercion, are associated with functional impairment of the patient. These findings suggest the need to provide support to caregivers, adjusted to the functional level of the patient, in order to prevent burden of care. Copyright © 2016 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

Family Caregiver Identity: A Literature Review

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Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

2015-01-01

Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…

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…

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

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

2017-08-01

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

The Burden of Schizophrenia on Caregivers

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Filiz Adana

2011-06-01

Full Text Available Caregivers’ burden in schizophrenia is a complex concept often with negative connotations. The concept refers to the impact of having a schizophrenia patient in the family including emotional, psychological, physical, economic distress and feelings of shame, embarrassment, guilt, and self-blame expe-rienced by the caregivers. There are objective and subjective aspects of care-givers’ burden. The objective burden refers to observed and verifiable impact of the diseased person in the family such as the patients disturbing behaviors, economic difficulties, and loss of income, restricted social activities, distressed household atmosphere, and undesirable influences on physical and mental health of the family members. The subjective burden refers to the extent of emotional distress caused by the objective burden. The data in the pertinent literature suggest an association between caregivers’ burden and sex, ethnicity, culture, caregivers’ health and quality of life, social support, and the symptomatology as presented by the patient. In order to promote mental health of schizophrenia patients along with their caregivers, the mental health workers should strive to find the means of supporting, informing, and cooperating with the family members. Psychosocial interventions designed for families and psychosocial rehabilitations programs designed for schizophrenia patients are effective means of easing caregivers’ burden.

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

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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...

Soporte social con Tecnologías de la Información y la Comunicación a cuidadores: Una experiencia en Cartagena, Colombia Suporte social com tecnologias da informação e a comunicação a cuidadores: uma experiência em Cartagena, Colômbia Social support with information technologies and communication to caregivers: An experience in Cartagena, Colombia

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Inna Elida Flórez Torres

2012-03-01

Informação e Comunicação foi efetivo nos cuidadores intervindos.Objective. To determine the effectiveness of social support through the radio and web in caregivers of the city of Cartagena, Colombia. Methodology. Semi-experimental research carried out in 2010 where 86 caregivers to whom the instrument Hilbert’s social support in chronic illness inventory was applied before and after a social support intervention through the radio and the web. ANOVA’s test was used to assess the differences in the score changes of the dimensions of the scale employed. Results. The average scores before and after the interventions were respectively by dimension: Guide: 59.6 and 81.9; personal interaction 43.3 and 51.6; Feedback 20.7 and 27.3. Social interaction: 20.6 and 25.7. For all the dimensions statistically significant differences were found in the averages. Conclusion. There is evidence in favor that social support with information technologies and communication was effective in the intervened caregivers.

Caregiver Sensitivity, Contingent Social Responsiveness, and Secure Infant Attachment

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Dunst, Carl J.; Kassow, Danielle Z.

2008-01-01

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

Optimism and benefit finding in parents of children with developmental disabilities: The role of positive reappraisal and social support.

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Slattery, Éadaoin; McMahon, Jennifer; Gallagher, Stephen

2017-06-01

Researchers have consistently documented the relationship between optimism and benefit finding; however, there is a dearth of research on the psychological mechanisms mediating their association. This cross-sectional study sought to elucidate the mediating role of positive reappraisal and social support in the optimism-benefit finding relationship in parents caring for children with developmental disabilities by testing a parallel multiple mediation model. One hundred and forty-six parents caring for children with developmental disabilities completed an online survey assessing optimism, positive reappraisal, social support and benefit finding. Optimism was not directly related to benefit finding but rather influenced it indirectly through positive reappraisal and social support. Specifically, higher levels of optimism predicted greater positive reappraisal and social support, which in turn led to greater benefit finding in parents. These results underscore the importance of targeting parents' perceptions of benefits through both positive reappraisal and social support in order to help them cope with the demands of the caregiving context. Copyright © 2017 Elsevier Ltd. All rights reserved.

Civic and legal advances in the rights of caregivers for persons with severe mental illness related disability

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Hareesh Angothu

2016-01-01

Full Text Available Caregivers for persons with disabilities are very important in the process of recovery and rehabilitation, irrespective of the cause of disability. Their services are equally important as of the health professionals. Often it is the caregivers who bear the major burden by assisting for daily needs of persons with disabilities apart from providing financial and social supports to their dependant persons with disabilities. In the process of caregiving they may have to forego their opportunities to attend work of their choice, to earn money, to progress in career, to spend satisfactory social life, and even to spend time leisurely. Yet, the informal caregiving process and the caregivers as a service provider, for persons with disabilities, have received less attention from civic societies and various state systems. However, change of paradigm of caregiving process as family responsibility to society′s collective responsibility and a stronger voice of caregiver associations has brought certain recent changes in this field. There are few governments who have recognized the importance of caregivers for their informal services and sacrifices and started providing benefits for them, thus caring for the caregivers. We review and discuss such policies and regulations which protect the rights of caregiver in this article.

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.

Death Anxiety and Quality of Life in Iranian Caregivers of Patients With Cancer.

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Soleimani, Mohammad Ali; Lehto, Rebecca H; Negarandeh, Reza; Bahrami, Nasim; Chan, Yiong Huak

Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P quality of life. Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed.

COPING SKILLS OF IRANIAN FAMILY CAREGIVERS' IN CARETAKING OF PATIENTS UNDERGOING HAEMODIALYSIS: A QUALITATIVE STUDY.

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Eslami, Ahmad Ali; Rabiei, Leili; Abedi, Heidar Ali; Shirani, Majid; Masoudi, Reza

2016-09-01

Coping skills enable caregivers to establish and maintain supportive relationships with the haemodialysis patients they care for. These skills are very important in terms of social support, promotion of mental health and social and family relations. The aim of this study is to investigate the coping skills of Iranian family caregivers as they take care of patients undergoing haemodialysis. Twenty participants were selected for the study through purposive sampling. The data gathering techniques used for the research were in-depth and unstructured interviews. The researchers used an inductive thematic analysis approach to analyse the data generated from the interviews. Four main themes emerged from the data: help-seeking skills, self-nurturing skills, time management skills and stress management skills. The focus of attention was on the stress management coping skills of the caregivers of haemodialysis patients together with their ability to cope with complex problems. Healthcare providers, by taking into account these skills and strategies of empowerment, can help other caregivers of haemodialysis patients cope with their heavy care conditions and better define their purposes in caretaking. © 2016 European Dialysis and Transplant Nurses Association/European Renal Care Association.

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.

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.

A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones.

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Garvelink, Mirjam M; Ngangue, Patrice A G; Adekpedjou, Rheda; Diouf, Ndeye T; Goh, Larissa; Blair, Louisa; Légaré, France

2016-04-01

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors. Project HOPE—The People-to-People Health Foundation, Inc.

"It still haunts me whether we did the right thing": a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers.

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Harrop, Emily; Morgan, Fiona; Byrne, Anthony; Nelson, Annmarie

2016-11-08

Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.

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.

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

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He Leow, Mabel Qi; Wai Chi Chan, Sally

from the JBI-MAStARI (Joanna Briggs Institute-Meta Analysis of Statistics Assessment and Review Instrument). Quantitative data were extracted from included papers using standardised data extraction tools from the JBI-MAStARI. Findings were presented in narrative form, as statistical pooling was not possible. Seven studies were included in the review. All the studies used a cross-sectional descriptive survey for the collection of data. Four main factors that influenced caregivers' perception of caregiving burden were identified: 1. Caregiver characteristics, 2. Patient characteristics, 3. Social support, and 4. Caregivers' personal protective resources. Caregiver characteristics, patient characteristics, social support, and attitude of caregiver towards the caregiving situation, were found to influence caregivers' perceived caregiving burden. Additional support is required for caregivers who are employed, known to have financial difficulties, caring for patient indicating symptom distress, and caring for a patient at the terminal stage (Level III). Future studies may attempt to develop a framework to identify factors that impact on caregiver burden. More studies on caregiver burden in males, caregiver burden of patients who were at the terminal stages of the various chronic illnesses should be explored.

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.

Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury.

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Farajzadeh, Ata; Akbarfahimi, Malahat; Maroufizadeh, Saman; Rostami, Hamid Reza; Kohan, Amir Hassan

2018-02-01

To investigate the psychometric properties of the Persian version of Caregiver Burden Scale (CBS) in caregivers of patients with spinal cord injury. This is a cross-sectional study. After a forward-backward translation, the CBS was administered to 110 caregivers of patients with spinal cord injury (men = 60, women = 50). Factor structure was evaluated by confirmatory factor analysis. The Internal consistency and test-retest reliability of the CBS were examined using Cronbach's α and the intraclass correlation coefficient, respectively. Construct validity was assessed by examining the relationship among CBS and the World Health Organization Quality of Life, and the Beck Depression Inventory. The results of confirmatory factor analysis provided support for a five-factor model of CBS. All subscales of CBS revealed acceptable internal consistency (0.698-0.755), except for environment subscale (0.559). The CBS showed adequate test-retest reliability for its subscales (0.745-0.900). All subscales of CBS significantly correlated with both Beck Depression Inventory and World Health Organization Quality of Life, confirming construct validity. The Persian version of the CBS is a valid and reliable measure for assessing burden of care in caregivers of patients with spinal cord injury. Implications for Rehabilitation Spinal cord injury leads to depression, high levels of stress and diminished quality of life due to the high physical, emotional, and social burdens in caregivers. Persian version of the Caregiver Burden Scale is a valid and reliable tool for assessing burden in Iranian caregivers of patients with spinal cord injury.

The psychological well-being of disability caregivers: examining the roles of family strain, family-to-work conflict, and perceived supervisor support.

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