Guided participation in cultural activity by toddlers and caregivers.

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

1993-01-01

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

Evaluation of primary caregivers' perceptions on home trampoline use.

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Singh, Supriya; Coriolano, Kamary; Davidson, Jacob; Cashin, Megan; Carey, Timothy; Bartley, Debra

2018-06-01

Trampolines are widely used by children, but trampoline injuries can be severe and may require hospital care or even surgery. This pilot study examined the effectiveness of an educational intervention on caregivers' perceptions of trampoline use and safety for their children. Primary caregivers were recruited from the orthopedic clinic at the Children's Hospital at our institution in 2015. Caregivers were asked to complete a survey at two time points, initially in clinic and one week post educational intervention. The educational intervention was a pamphlet outlining trampoline safety data. Data analysis occurred in 2016. From the 100 primary caregivers recruited, 39 caregivers owned a trampoline, and 10 had presented to the emergency department with their child for an injury related to trampoline use. After educational intervention, caregivers had higher rating of perceived danger associated with trampolines (6/10 vs. 8/10, p trampoline use (56% vs. 91%, p trampolines are dangerous (pre: 44% vs. post: 73%, p trampoline. Overall, the results of this study show that a simple educational intervention can help to increase knowledge around safe trampoline practices and increase awareness of injury. Further, this study can act as initial evidence for future studies to implement this type of intervention long-term.

Evaluation of primary caregivers' perceptions on home trampoline use

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Supriya Singh

2018-06-01

Full Text Available Trampolines are widely used by children, but trampoline injuries can be severe and may require hospital care or even surgery. This pilot study examined the effectiveness of an educational intervention on caregivers' perceptions of trampoline use and safety for their children.Primary caregivers were recruited from the orthopedic clinic at the Children's Hospital at our institution in 2015. Caregivers were asked to complete a survey at two time points, initially in clinic and one week post educational intervention. The educational intervention was a pamphlet outlining trampoline safety data. Data analysis occurred in 2016.From the 100 primary caregivers recruited, 39 caregivers owned a trampoline, and 10 had presented to the emergency department with their child for an injury related to trampoline use. After educational intervention, caregivers had higher rating of perceived danger associated with trampolines (6/10 vs. 8/10, p < 0.001. Additionally, a greater number of caregivers were more knowledgeable on the safe age of trampoline use (56% vs. 91%, p < 0.001 and safe number of jumpers (45% vs. 86%, p < 0.001. Finally, there was a 29% increase in the proportion of caregivers who at least agreed that trampolines are dangerous (pre: 44% vs. post: 73%, p < 0.001, however 50% of caregivers would still allow their child to use a trampoline.Overall, the results of this study show that a simple educational intervention can help to increase knowledge around safe trampoline practices and increase awareness of injury. Further, this study can act as initial evidence for future studies to implement this type of intervention long-term. Keywords: Pediatrics, Trampoline, Injury, Orthopedics, Children

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

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

2017-11-01

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

Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants.

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DiLauro, Michelle; Pereira, Amanda; Carr, Jennifer; Chiu, Mary; Wesson, Virginia

2015-02-20

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Tasks performed by primary caregivers and migrant live-in homecare workers in Israel

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Esther Iecovich

2011-01-01

Full Text Available The issue of migrant live-in homecare workers has been barely addressed in the gerontological literature, in spite of the increase of older persons being cared for by such persons in many Western countries. The purposes of the study are to examine the extent to which migrant live-in homecare workers substitute family caregivers or complement the care that is provided by primary caregivers, and to examine if there are differences in primary caregivers’ involvement in providing help with activities of daily living (ADL and instrumental activities of daily living (IADL before and after hiring a migrant live-in homecare worker, by caregivers’ employment status and gender. The data were drawn from a study that included 335 triads (care recipients, their primary caregivers, and their Filipina live-in homecare workers. The findings show that for the most part primary caregivers continue to play a significant role in providing care, in particular with regard to IADL tasks, even when there is a migrant live-in homecare worker. Several patterns of division of labor between the formal and informal caregivers were identified; that is, in some cases they complement each other while in other cases the migrant live-in homecare workers substitute for the care previously provided by the primary caregivers. Significant differences between male and female caregivers and between working and nonworking caregivers were found with regard to involvement in providing care before and after employment of a migrant homecare worker.

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

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

2018-01-24

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

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

Science.gov (United States)

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

2012-01-01

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

[Depression and burden on primary caregivers of elderly persons with physical dependence of the UMF 171].

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Navarro-Sandoval, Cristina; Uriostegui-Espíritu, Lizbeth Carlota; Delgado-Quiñones, Edna Gabriela; Sahagún-Cuevas, Minerva Natalia

2017-01-01

According to the National Health and Nutrition Survey of 2012, more than a quarter of older adults (26.9%) have some degree of disability, requiring a primary caregiver to perform basic activities of daily living. The aim is to determine the prevalence of depression and burden on primary caregivers of elderly persons with physical dependence. A descriptive cross-sectional study with non-probability sampling that included the primary caregivers of elderly patients with physical dependence. Barthel scale was applied as a tool to measure the level of physical dependence in elderly patients; while the primary caregivers were applied to the Beck Depression and Zarit scale for assessing the level of caregiver burden. A sample of 76 primary caregivers was calculated and descriptive statistical analysis was performed. Of the 76 primary caregivers, 55.3% were without depression, 32.9% had mild depression, and 11.8% with moderate depression. According to the Zarit scale, 40.8% had no burden, 44.7% had burden light, and 14.5% intense burden. The role of primary caregiver is a stressful task which can interfere with their family health; so our role is to provide care not only to the geriatric dependent patients, but also to their caregiver.

Burden and depression in primary caregivers of persons with visual impairment

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Shubhank Khare

2016-01-01

Full Text Available Context: Caregivers who assist persons with visual impairment often neglect their needs, resulting in burden and depression. Rehabilitation efforts, directed to the disabled, seldom target the caregiver. Aim: To assess burden and depression in persons caring for blind individuals. Settings and Design: This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. Materials and Methods : Institutional Ethical Board approval was obtained and written informed consent too was obtained from the participants involved in this study. Persons with best-corrected vision <20/200 in the better eye, and their primary caregivers, were recruited. We recorded demography, other illness/disability, household income, relationship with disabled person, and caregiver burden (Caregiver Burden Scale and depression (Centre for Epidemiologic Studies Depression Scale. Statistical Analysis: Statistical analysis was carried out using SPSS version 20 (Released 2011. Armonk, NY: IBM Corp.; range, average, and standard deviation were determined for age, burden, and depression. The association between burden and depression was determined using Pearson′s correlation; the relationship between degree of disability and caregiver burden and depression was determined using unpaired t-test; using multiple linear regression, factors were found to be statistically significant; significance was taken at P < 0.05. Results: Twenty-seven (53.0% men and 24 (47.0% women had visual impairment. Most caregivers (n = 40; 81.6% were first-degree relatives or a spouse; 32 (65% had schooling <5 years; and 29 (59% were unemployed. Depression ranged from 21 to 52 (average 43.2 ± 5.71; it correlated with degree of disability (P = 0.012, household income (r = −0.320; P = 0.025, and burden (r = 0.616; P < 0.001. Burden ranged from 30 to 73 (average 54.5 ± 6.73 and correlated with degree of disability (P = 0.006. On multiple linear

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

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

2017-03-01

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

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

African Journals Online (AJOL)

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

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

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Wafa eTrad

2015-09-01

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

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...

[22q11.2 deletion: handicap-related problems and coping strategies of primary caregivers].

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Briegel, Wolfgang; Schneider, Marco; Schwab, K Otfried

2009-11-01

To investigate handicap-related problems of children and adolescents with 22q11.2 deletion syndrome and their primary caregivers' coping strategies. Primary caregivers of 153 subjects aged 2-16 years were anonymously asked to fill out questionnaires, e.g., the Handicap Related Problems for Parents Inventory. Primary caregivers of 96 subjects (53 males, 43 females; mean age: 7;0 [2;1-16;11] years) sent back questionnaires. Patient's behaviour and discipline were the most important handicap-related problems. Significant correlations could be found between the patient's age and his/her relationship with the primary caregiver (rho=0.228; p=.029) and other family members (rho=0.293; p=.004). Compared to other parents of physically handicapped children or those with multiple handicaps, these parents did not experience increased stress. The more the coping strategies "self-fulfillment" and "intensification of partnership" were used, the lower parental stress was (p=.012, p=.025, respectively). "Focusing on the handicapped child" was positively correlated with high parental stress (p=.000). With regard to parental stress and coping strategies, primary caregivers of children and adolescents with 22q11.2 deletion do not significantly differ from other parents of physically handicapped children. As handicap-related family problems increase with the patient's age, a growing need for counseling, especially for aspects of parenting and discipline, and for treatment can be presumed.

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

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Ling-Ling Yeh

2008-08-01

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

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

DEFF Research Database (Denmark)

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

2014-01-01

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

Review of informal care. Discovering the primary caregiver

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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.

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

Science.gov (United States)

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

2016-01-01

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

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

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

2018-01-01

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

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

OpenAIRE

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

2017-01-01

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

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

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

1999-10-01

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

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

Science.gov (United States)

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

2015-01-01

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

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

Science.gov (United States)

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

2015-08-01

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

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

Science.gov (United States)

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

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

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

Science.gov (United States)

Casado, Banghwa; Sacco, Paul

2012-05-01

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

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

Science.gov (United States)

Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

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

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

Science.gov (United States)

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.

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

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Norton, Julie L; Raciti, Maria M

2017-01-01

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

Caregiver burden and vocational participation among parents of adolescents with CF.

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Neri, Luca; Lucidi, Vincenzina; Catastini, Paola; Colombo, Carla

2016-03-01

Cystic fibrosis (CF) require parents to make significant lifestyle changes to accommodate their children's treatments. We examined the impact of CF-related caregiving on parents' occupational adjustment and labor supply in terms of organizational changes, presenteeism, and absenteeism. Nineteen Italian CF referral centers joined the LINFA group. We enrolled 168 adolescents with the disease and their parents (n = 225) in a cross-sectional survey research. Patients and their parents answered a self-administered questionnaire (child: SF-12, satisfaction with life, MRC Dyspnea scale; parent: caregiver burden scale, short depression-happiness scale, self-rated health, socio-demographic factors). A pediatrician recorded clinical information (pulmonary exacerbations, CF-related complications, treatment, BMI percentile, Fev1 %). Patients mean age was 16 ± 2.6 and mean BMI percentile was 42.1 ± 29.1; 92 patients (55%) had FEV1 % > 80. Mean parents' age was 45.9 ± 5.9 years, and 59% were women; 75% of women and 24% of men reported to be the primary caregiver. Only 12% had a graduate or post-graduate degree and 56.4% were employed. Approximately 34% of parents reported short depression-happiness scale scores suggestive of clinical depression. Higher caregiving strain was associated with increased likelihood of changing job, work shift schedule, or giving up career opportunities in order to fulfill their caregiving role and increased productivity losses due to family leaves and presenteeism. Caregiving burden is a relevant and frequent issue among parents of adolescent patients with cystic fibrosis. We showed that the humanistic and vocational impact of caring for young patients with the disease is striking and demands health-care and welfare supportive actions. © 2015 Wiley Periodicals, Inc.

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....

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.

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

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

2013-01-01

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

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

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

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

2016-10-28

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

Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study.

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Jeyagurunathan, Anitha; Sagayadevan, Vathsala; Abdin, Edimansyah; Zhang, YunJue; Chang, Sherilyn; Shafie, Saleha; Rahman, Restria Fauziana Abdul; Vaingankar, Janhavi Ajit; Chong, Siow Ann; Subramaniam, Mythily

2017-05-19

This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia. A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses. The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms

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.

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

Science.gov (United States)

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

2013-01-01

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

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

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Klunklin, Pimpaporn; Harrigan, Rosanne C

2002-08-01

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

The relationship between family obligation and religiosity on caregiving.

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Epps, Fayron

2014-01-01

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

Why Latinas With Breast Cancer Select Specific Informal Caregivers to Participate With Them in Psychosocial Interventions.

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Badger, Terry; Segrin, Chris; Swiatkowski, Paulina; McNelis, Melissa; Weihs, Karen; Lopez, Ana Maria

2017-07-01

The purpose of this study is to describe the reasons 88 Latinas with breast cancer selected specific supportive others to participate in an 8-week psychosocial intervention. Participants were asked one open-ended question during the baseline assessment for a larger clinical trial: "Could you tell me more about why you selected [insert name] to participate in the study with you?" A content analysis of the responses found three thematic categories: source of informational or emotional support, concern for the informal caregiver's welfare, and special characteristics or qualities of the informal caregiver. These findings reflected both the cultural value of familism, the woman's role as caregiver to the family ( marianismo), and the man's role of provider ( machismo). Findings provide support for including the supportive person identified by the patient during a health crisis rather than the provider suggesting who that should be. Psychosocial services designed and implemented through such a cultural lens are more likely to be successful.

Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.

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Bergström, Aileen L; von Koch, Lena; Andersson, Magnus; Tham, Kerstin; Eriksson, Gunilla

2015-06-01

To explore and describe persons with stroke and their caregivers' restrictions in participation in everyday occupations, i.e. occupational gaps, 3-6 months post-stroke, in relation to life satisfaction, combined life satisfaction, care-giver burden, perceived impact of stroke, and activities of daily living. Cross-sectional study. Persons with stroke and their caregivers (105 dyads). The Occupational Gaps Questionnaire, Life Satisfaction Checklist, Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used. Correlations were analysed with Spearman's rank, and regression analyses used life satisfaction as the dependent variable. At least one person in 86% of the dyads perceived restrictions in participation, with the most common gap in travelling for pleasure. Correlations were low between the numbers of occupational gaps and life satisfaction (R = -0.33, R = -0.31); however, life satisfaction accounted for occupational gaps both for persons with stroke and for caregivers. A greater number of occupational gaps were perceived in the dyads with combined low levels of life satisfaction compared with those with combined high levels of life satisfaction. Participation in everyday occupations is related to life satisfaction even for caregivers of persons with stroke. The results of this study add to our knowledge about the stroke-caregiver dyad and will help to inform family-centred approaches within stroke rehabilitation.

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

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Tornatore, Jane B; Grant, Leslie A

2004-03-01

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

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

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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.

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.

Sex disparities in access to caregiving in Parkinson disease.

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

2018-01-02

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

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

Science.gov (United States)

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

2017-01-05

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

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

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Lynch, J; Cahalan, R

2017-11-01

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

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

Science.gov (United States)

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

2017-12-01

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

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

Directory of Open Access Journals (Sweden)

Hui-Yu Fan

2016-12-01

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

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

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

2009-07-01

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

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

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Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

2008-04-15

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

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

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Caliandro, G; Hughes, C

1998-01-01

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

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

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Hsiao, Chiu-Yueh; Tsai, Yun-Fang

2015-06-01

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help

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

Science.gov (United States)

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

2009-01-01

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

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

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

2012-07-01

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

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

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

2005-01-01

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

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

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

2017-01-01

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

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

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

2016-03-25

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

Participant and caregiver experience of the Nintendo Wii Sports™ after stroke: qualitative study of the trial of Wii™ in stroke (TWIST).

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Wingham, Jenny; Adie, Katja; Turner, David; Schofield, Christine; Pritchard, Colin

2015-03-01

To understand stroke survivors and their caregivers' experience and acceptability of using the Nintendo Wii Sports™ games (Wii™) as a home-based arm rehabilitation tool. A qualitative study within a randomized controlled trial investigating the effectiveness of using the Wii™ for arm rehabilitation. Data were analysed using thematic analysis. Participants and carers were interviewed in their homes. Eleven male and seven female participants and 10 caregivers who were taking part in the randomized controlled trial within six months of stroke. Median age 65. All participants were using the Wii™ for arm rehabilitation. Semi-structured interviews. Five themes were identified: diligence of play, perceived effectiveness, acceptability, caregiver and social support, and the set-up and administration of the Wii™. Participants appreciated the ability to maintain a social role and manage other comorbidities around the use of the Wii™. A small number of participants found the Mii characters too childlike for adult rehabilitation. The most popular game to start the rehabilitation programme was bowling. As confidence grew, tennis was the most popular, with baseball and boxing being the least popular games. Caregivers provided some practical support and encouragement to play the Wii™. The Wii™ may provide an engaging and flexible form of rehabilitation with relatively high reported usage rates in a home setting. The Wii™ was acceptable to this sample of patients and their caregivers in home-based rehabilitation of the arm following stroke. © The Author(s) 2014.

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

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Lobbestael, Jill; Arntz, Arnoud

2015-09-01

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

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

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Paulson, Daniel; Lichtenberg, Peter A.

2011-01-01

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

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

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

2015-09-01

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

The Effect of Participation in Support Groups on Depression, Anxiety and Stress in Family Caregivers of People with Alzheimers: Randomized clinical trial

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Fahimeh Taati

2016-07-01

Full Text Available This study sought to determine the effect of participation in support groups on the depression, anxiety and stress level of caregivers of patients with Alzheimer. This study was a single blind randomized clinical controlled trial (RCT with 80 family caregivers of people with Alzheimer’s (per group=40. The intervention group participated in eight sessions 1.5- 2 hours in support groups. The tool used in this study was the DASS-21 questionnaire for measuring depression, anxiety and stress level of the caregivers, analysis of parametric data, using SPSS version 21. Findings showed, participation in support groups showed no significant difference on depression, anxiety and stress in family caregivers of Alzheimer patients in the control group and the intervention group. Given that caring for these patients by their family members are very sensitive and costly issues for policy makers and health service providers, community and families of these patients.

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

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Heritage, Jeannette G.; And Others

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

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

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Manuel, Ruiz-Adame Reina

2015-12-01

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

The correlation between mothers' participation in infant care in the NICU and their anxiety and problem-solving skill levels in caregiving.

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Çakmak, Emine; Karaçam, Zekiye

2018-01-01

To examine the correlation between mothers' participation in infant care in the Neonatal Intensive Care Unit (NICU) and their anxiety and problem-solving skill levels in caregiving. The cross-sectional study was conducted with 340 mothers whose babies were in the NICU. Data were collected with a questionnaire, a Participation in Caregiving Observation Form, the State and Trait Anxiety Inventory and the Problem-solving Skills Evaluation Form. Descriptive statistics and correlation analysis were used in the evaluation of the data. The mothers were with their babies an average of 6.28 ± 2.43 (range: 1-20) times a day, participating in many basic procedures of care. A negative correlation was found between the mothers' scores on the Participation in Caregiving Observation Form and their State and Trait Anxiety Inventory scores (respectively, r = -0.48, p Problem-solving Process (r = 0.41, p problem-solving skills with respect to baby care and related problems.

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

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

2018-01-22

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

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

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

2016-05-01

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

Finding care for the caregiver? Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing.

NARCIS (Netherlands)

Tanis, M.A.; Das, E.; Fortgens-Sillmann, M.

2011-01-01

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek

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 caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

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

2015-06-01

Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare

Physical disability contributes to caregiver stress in dementia caregivers.

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

2005-03-01

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

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

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Yi Eng J

2011-06-01

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

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

Science.gov (United States)

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

2018-05-11

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

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

Science.gov (United States)

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

2017-01-01

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

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

Science.gov (United States)

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

2017-11-01

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

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

LENUS (Irish Health Repository)

Gallagher, Niamh

2012-12-20

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

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

Science.gov (United States)

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

1999-04-01

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

Participation of informal caregivers in the hospital care of elderly patients and their evaluations of the care given: pilot study in three different hospitals.

Science.gov (United States)

Laitinen, P

1992-10-01

This action research is an ongoing study which will last from 1991 to 1993. The main purpose of the study is to increase the participation of informal caregivers in the hospital care of elderly patients without decreasing the quality of care. The data reported here are from a pilot study. This study had three aims: (a) to test reliability and validity of the measure used, (b) to investigate the current participation of informal caregivers in the hospital care of elderly patients (aged over 75), and (c) to evaluate and compare the quality of care from both the patients' and the informal caregivers' point of view in three different hospitals. The measure of quality of care was developed on the basis of need theories, mainly those of Maslow and Alderfer. Patients and caregivers were also asked to rate the participation of the caregivers in the hospital care of elderly patients. Participation consisted of 18 activities of daily living. The pilot test with 18 elderly hospital patients and seven family members or significant others showed differences between the two groups in perception of care received. Statistically significant differences (P needs, psychic and spiritual needs and totals. The results supported earlier findings that elderly patients are satisfied with and do not criticize their care. The younger generation (i.e. their children) is more demanding and has precise perceptions about the care given. Relatives could be used more in planning, evaluation and even implementation of care; however, their current participation in patient hospital care is minimal.

Understanding differences between caregivers and non-caregivers in completer rates of Chronic Disease Self-Management Program.

Science.gov (United States)

Shi, J; McCallion, P; Ferretti, L A

2017-06-01

The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. Secondary analysis using regression analysis to predict the outcome. Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers. People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend. Copyright © 2017. Published by Elsevier Ltd.

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

Science.gov (United States)

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

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

Science.gov (United States)

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

2016-10-04

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

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

Science.gov (United States)

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

2018-04-05

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

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

DEFF Research Database (Denmark)

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

2015-01-01

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

An employee assistance program for caregiver support.

Science.gov (United States)

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.

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

Science.gov (United States)

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

2015-01-01

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

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

African Journals Online (AJOL)

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

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

Science.gov (United States)

Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

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

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

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

Science.gov (United States)

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

1998-04-01

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

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

Science.gov (United States)

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.

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

Directory of Open Access Journals (Sweden)

Pérez-Arechaederra Diana

2010-09-01

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

Culture, role conflict and caregiver stress: The lived experiences of family cancer caregivers in Nairobi.

Science.gov (United States)

Githaiga, Jennifer Nyawira

2017-10-01

This article explores the experiences of a small group of Nairobi women caring for a family cancer patient at home. On the basis of literature on women as caregivers in Africa, and on other literature more broadly, it was anticipated that issues around generational roles, gender and women's cultural role would be relevant. Seven women participated in semi-structured in-depth interviews, while thirteen women participated in four mini focus groups. Data were analysed using interpretative phenomenological analysis. Findings underscore the socio-cultural complexities of caregiving as a basis for evidence-based culturally appropriate structures to support family caregivers.

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

Science.gov (United States)

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

2016-10-01

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

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

Science.gov (United States)

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

2016-01-01

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

CAREGIVERS' KNOWLEDGE AND HOME MANAGEMENT OF FEVER IN CHILDREN.

Science.gov (United States)

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

2014-05-01

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

Participation in a US community-based cardiovascular health study: investigating nonrandom selection effects related to employment, perceived stress, work-related stress, and family caregiving.

Science.gov (United States)

MacDonald, Leslie A; Fujishiro, Kaori; Howard, Virginia J; Landsbergis, Paul; Hein, Misty J

2017-09-01

Participation in health studies may be inversely associated with employment and stress. We investigated whether employment, perceived stress, work-related stress, and family caregiving were related to participation in a longitudinal US community-based health study of black and white men and women aged ≥45 years. Prevalence ratios and confidence intervals were estimated for completion of the second stage (S2) of a two-stage enrollment process by employment (status, type), and stress (perceived stress, work-related stress, caregiving), adjusting for age, sex, race, region, income, and education. Eligibility and consent for a follow-up occupational survey were similarly evaluated. Wage- but not self-employed participants were less likely than the unemployed to complete S2. Among the employed, S2 completion did not vary by stress; however, family caregivers with a short time burden of care (stress levels. Limited evidence of selection bias was seen by employment and stress within a large US community-based cohort, but findings suggest the need for enrollment procedures to consider possible barriers to participation among wage-employed individuals. Published by Elsevier Inc.

Do Alzheimer's Disease Patients Want to Participate in a Treatment Decision, and Would Their Caregivers Let Them?

Science.gov (United States)

Hirschman, Karen B.; Joyce, Colette M.; James, Bryan D.; Xie, Sharon X.; Karlawish, Jason H.T.

2005-01-01

Purpose: This study was designed to examine the factors associated with the preferences of Alzheimer's disease patients to participate in a decision to use an Alzheimer's disease-slowing medication and how involved their caregivers would let them be in this decision. Design and Methods: Interviews were conducted with 48 patients in the…

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

Science.gov (United States)

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

2012-01-01

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

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

Science.gov (United States)

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

2015-01-01

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

Tacit definitions of informal caregiving.

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

2001-01-01

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

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

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

2018-03-01

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

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

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Karina Javalkar

2017-05-01

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

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.

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

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Shu-Ping Wei

2011-06-01

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

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

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

2015-01-01

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

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

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

2015-02-01

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

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

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

2016-09-01

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

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

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

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

Race and Gender Differences in One-Year Outcomes for Community-Dwelling Stroke Survivors with Family Caregivers

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Roth, David L.; Haley, William E.; Clay, Olivio J.; Perkins, Martinique; Grant, Joan S.; Rhodes, J. David; Wadley, Virginia G.; Kissela, Brett; Howard, George

2011-01-01

Background and Purpose Previous research has reported worse outcomes after stroke for women and for African Americans, but few prospective, population-based studies have systematically examined demographic differences on long-term stroke outcomes. Race and gender differences on one-year stroke outcomes were examined using an epidemiologically-derived sample of first-time stroke survivors from the national REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Methods Participants of REGARDS who reported a first-time stroke event during regular surveillance calls were interviewed by telephone and then completed an in-home evaluation approximately one year after the verified first-time stroke event (N = 112). A primary family caregiver was also enrolled and interviewed for each stroke survivor. Measures from the in-home evaluation included previously validated stroke outcomes assessments of neurological deficits, functional impairments, and patient-reported effects of stroke in multiple domains. Results African American stroke survivors were less likely to be living with their primary family caregivers than White participants. Analyses that controlled for age, education, and whether the stroke survivors lived with their primary family caregivers indicated that African Americans and women showed significantly greater deficits on multiple one-year outcome measures compared to Whites and men, respectively. Conclusions Among community-dwelling stroke survivors with family caregivers, women and African Americans are at heightened risk for poor long-term outcomes one year after first-time stroke events. Rehabilitation services and public health policies aimed at enhancing stroke recovery rates should address these disparities in post-stroke outcomes. PMID:21257820

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

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

2014-09-01

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

Feasibility of central meditation and imagery therapy for dementia caregivers.

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

2014-08-01

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

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

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

2007-01-01

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

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

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

2015-12-01

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

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

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

2016-01-01

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

Beliefs about the cause of schizophrenia among caregivers in Midwestern Nigeria

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Osayi Igberase

2017-07-01

Full Text Available Schizophrenia is a devastating illness with a chronic and relapsing course. While Western countries may endorse, biological and psychosocial causes more commonly than supernatural causes, non-western cultures like Nigeria in contrast, tend to endorse supernatural causes. Belief in supernatural causes has been reported to have consequences for treatment seeking behavior. This study aimed to examine the causes of schizophrenia reported by family members of outpatients with schizophrenia in a neuropsychiatric hospital in Midwestern Nigeria. In this study, we recruited a convenient sample of 200 consecutive caregivers of patients visiting the outpatient department of the Psychiatric Hospital, Benin City, Nigeria. These primary caregivers were unpaid relatives who provided support to patients. The patients were service users who fulfilled the diagnostic criteria of the International Classification of Disease [ICD-10; World Health Organization 1993] for schizophrenia and had been on treatment for at least two years. Majority (72.0% of caregivers endorsed supernatural causes as most important in the etiology of schizophrenia, while 28.0% endorsed natural causes. Every participant without formal education endorsed supernatural attribution. In our study, it was evident that participants embraced multiple causal attributions for schizophrenia.

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

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

2014-01-01

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

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

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

2013-02-08

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

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

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Van Houtven Courtney

2011-11-01

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

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.

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.

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

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Yemisi Okikiade Oyegbile

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

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

Science.gov (United States)

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

2015-04-01

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

Non-pharmacological interventions for caregivers of stroke survivors.

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

2011-10-05

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

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

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

2013-05-01

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

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

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

2015-01-01

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

Caring for family caregivers: An analysis of a family-centered intervention

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Carme Ferré-Grau

2014-08-01

Full Text Available Objective To assess the effectiveness of Problem-Solving Therapy (PST on family caregivers through the use of scales to measure anxiety, depression and emotional distress; and to explore facilitating factors and obstacles for its use based on the narrative of nurses. Method A clinical trial and an exploratory focus group with the use of mixed analysis methodology. The study was conducted in a primary health care center in Tarragona, Spain, and the sample consisted of 122 family caregivers who were included in the home care service, and 10 nurses who participated in the intervention group. Family caregivers with evident symptoms of anxiety, depression and emotional distress received PST in the intervention group. The intervention group also consisted of a discussion with eight nurses, which was transcribed and submitted to content analysis. Conclusion Problem-Solving Therapy proved to be effective in reducing perceived anxiety, depression and emotional distress. We identified its strong points and obstacles as described by nurses.

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

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

2016-06-01

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

The Psychological Impact of Child Sexual Abuse on Primary ...

African Journals Online (AJOL)

46987.2

survivors, there were. significant difference in the levels .... in therapy.4 Thus, primary caregivers seem to have ... groups. Strangely, market women and those at the health centre showed some unease ... The individual participant's scores are.

Social participation in home-living patients with mild Alzheimer's disease

DEFF Research Database (Denmark)

Sørensen, Lisbeth Villemoes; Waldorff, Frans Boch; Waldemar, Gunhild

2007-01-01

The purpose of this study was to investigate social participation in home-living patients with mild Alzheimer's disease (AD) and to identify predictors for low social participation. The study was based on baseline data from 330 home-living patients with mild AD who participated in The Danish...... Alzheimer Intervention Study (DAISY). Proxy-obtained information from primary caregiver assessed patients' social participation. The result showed that low social participation was present in mild AD. Significant independent predictors of low social participation were impairment in activities of daily...

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

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Karlijn J Joling

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

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.

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

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Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

2014-09-01

Pancreatic cancer presents a wide spectrum of significant symptomatology. The high symptom burden, coupled with a rapidly fatal diagnosis, limits preparation or time for adjustment for both patients and their family caregivers. From the initial diagnosis and throughout the illness experience, the physical and emotional demands of caregiving can predispose caregivers themselves to illness and a greater risk of mortality. Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role. To provide feasibility data for a larger, mixed methods, longitudinal study focused on the experience of family caregivers of patients with advanced pancreatic cancer and preliminary qualitative data to substantiate the significance of studying this caregiver population. This was a mixed methods study guided by the Stress Process Model. Eight family caregivers of patients with advanced pancreatic cancer from oncology practices of a university-affiliated medical center were surveyed. The pilot results supported the ability to recruit and retain participants and informed recruitment and data collection procedures. The qualitative results provided preliminary insights into caregiver experiences during the diagnosis and treatment phases. Key findings that substantiated the significance of studying these caregivers included the caregiving context of the history of sentinel symptoms, the crisis of diagnosis, the violation of assumptions about life and health, recognition of the circle of association, and contextual factors, as well as primary and secondary stressors, coping strategies, resources, discoveries, gains and growth, associated changes/transitions, and unmet caregiver needs. Findings indicated caregivers' willingness to participate in research, highlighted the negative and positive aspects of the caregiver experience, and reinforced the

Effects of stress appraisal on the quality of life of adult patients with multiple myeloma and their primary family caregivers in Korea.

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La, In Seo; Yun, Eun Kyoung

2017-10-01

Modern treatment for multiple myeloma (MM) has improved disease control and prolonged survival; thus, maintenance of quality of life (QoL) is considered a great concern for MM patients and their caregivers. The purpose of this study was to identify dyadic associations between stress appraisal and the QoL of patients with MM and their caregivers in Korea. A total of 102 MM patient-caregiver dyads participated in this study. They independently reported their stress appraisal and QoL. The study was guided by a transactional model of stress and coping, and analyzed by using the actor-partner interdependence model. The results revealed good data adjustment with acceptable indices: χ 2  = 6.211 (df = 6), CFI = 0.999, TLI = 0.994, RMSEA = 0.019, and SRMR = 0.043. MM patients' QoL were significantly correlated with caregivers' QoL. The stress appraisals of patients and caregivers mutually influenced each other's QoL. The patients' illness perception and the caregivers' burden were strong predictors for their QoL. The self-efficacy of patients and caregivers was also associated with their QoL. Our findings suggest that the way patients and caregivers perceive and respond to stress plays a significant role in their QoL during the treatment experience. Interventions designed to reconstruct negative perspectives and improve self-efficacy may help both patients and caregivers to improve their QoL. Copyright © 2016 John Wiley & Sons, Ltd.

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

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

2012-09-01

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

A randomised controlled trial of benefit finding in caregivers: The Building Resources in Caregivers Study Protocol

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Charles Brand

2015-07-01

Full Text Available Caregivers may engage in benefit finding, that is, an increase in perceived positive growth, as a cognitive strategy for coping with stress. The Building Resources in Caregivers study will compare effects of a brief benefit finding writing intervention with a control intervention. Caregivers of people with mental and physical disabilities will be randomised into either a benefit-writing group or a neutral writing group. Caregivers will complete measures relating to themselves and care-recipients (e.g. sociodemographics and illness type and psychometric measures of benefit finding, distress and quality of life at three time points. Additionally, qualitative commentary on participation experiences will be gathered.

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

Science.gov (United States)

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

2007-12-01

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

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

OpenAIRE

矢嶋, 裕樹

2007-01-01

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

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

OpenAIRE

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

2007-01-01

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

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

Science.gov (United States)

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

2013-01-01

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

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

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Taub Anita

2004-01-01

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

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.

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.

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

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Williams, Allison M; Tompa, Emile; Lero, Donna S; Fast, Janet; Yazdani, Amin; Zeytinoglu, Isik U

2017-09-20

Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s) to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s) for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s) in each participating workplace in order to determine: the degree of support for the intervention(s) (reflected in the workplace culture); how sex and gender are implicated; co-workers' responses to the chosen intervention(s), and

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

Science.gov (United States)

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

2013-01-01

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

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

Science.gov (United States)

Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

2018-03-01

We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p Family caregiver burden were also higher in depressive groups (p family caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

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

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Moon, Heehyul; Adams, Kathryn Betts

2013-11-01

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

Does Formal Employment Reduce Informal Caregiving?

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He, Daifeng; McHenry, Peter

2016-07-01

Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40-64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time-intensive caregiving and if care recipients are household members. Our results imply that work-promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Associations of Caregiver Stress with Working Conditions, Caregiving Practices, and Child Behaviour in Home-Based Child Care

Science.gov (United States)

Rusby, Julie C.; Jones, Laura Backen; Crowley, Ryann; Smolkowski, Keith

2013-01-01

Home-based child caregivers face unique stressors related to the nature of their work. One hundred and fifty-five home-based child care providers in Oregon, USA, participated in this cross-sectional correlational study. We investigated associations between indicators of caregiver stress and child care working conditions, the quality of caregiver…

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

OpenAIRE

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

2013-01-01

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

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

Directory of Open Access Journals (Sweden)

Brehaut Jamie

2004-01-01

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

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

Science.gov (United States)

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

2004-01-01

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

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

Science.gov (United States)

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

2017-12-01

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

Work Stress, Caregiving, and Allostatic Load

DEFF Research Database (Denmark)

Dich, Nadya; Lange, Theis; Head, Jenny

2015-01-01

OBJECTIVES: Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological......). Regardless of job strain, participants with low caregiving burden (below sample median) had lower subsequent AL levels than did non-caregivers (b = -0.22, 95% confidence interval = -0.06--0.37). CONCLUSIONS: The study provides some evidence for adverse effects of stress at work combined with family demands...

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

Science.gov (United States)

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

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

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

2018-01-01

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

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

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

2018-01-01

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

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

NARCIS (Netherlands)

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

2008-01-01

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

Impact of Alzheimer's Disease on Caregiver Questionnaire: internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden.

Science.gov (United States)

Cole, Jason C; Ito, Diane; Chen, Yaozhu J; Cheng, Rebecca; Bolognese, Jennifer; Li-McLeod, Josephine

2014-09-04

There is a lack of validated instruments to measure the level of burden of Alzheimer's disease (AD) on caregivers. The Impact of Alzheimer's Disease on Caregiver Questionnaire (IADCQ) is a 12-item instrument with a seven-day recall period that measures AD caregiver's burden across emotional, physical, social, financial, sleep, and time aspects. Primary objectives of this study were to evaluate psychometric properties of IADCQ administered on the Web and to determine most appropriate scoring algorithm. A national sample of 200 unpaid AD caregivers participated in this study by completing the Web-based version of IADCQ and Short Form-12 Health Survey Version 2 (SF-12v2™). The SF-12v2 was used to measure convergent validity of IADCQ scores and to provide an understanding of the overall health-related quality of life of sampled AD caregivers. The IADCQ survey was also completed four weeks later by a randomly selected subgroup of 50 participants to assess test-retest reliability. Confirmatory factor analysis (CFA) was implemented to test the dimensionality of the IADCQ items. Classical item-level and scale-level psychometric analyses were conducted to estimate psychometric characteristics of the instrument. Test-retest reliability was performed to evaluate the instrument's stability and consistency over time. Virtually none (2%) of the respondents had either floor or ceiling effects, indicating the IADCQ covers an ideal range of burden. A single-factor model obtained appropriate goodness of fit and provided evidence that a simple sum score of the 12 items of IADCQ can be used to measure AD caregiver's burden. Scales-level reliability was supported with a coefficient alpha of 0.93 and an intra-class correlation coefficient (for test-retest reliability) of 0.68 (95% CI: 0.50-0.80). Low-moderate negative correlations were observed between the IADCQ and scales of the SF-12v2. The study findings suggest the IADCQ has appropriate psychometric characteristics as a

Evaluation of caregiver-friendly workplace policy (CFWPs interventions on the health of full-time caregiver employees (CEs: implementation and cost-benefit analysis

Directory of Open Access Journals (Sweden)

Allison M. Williams

2017-09-01

Full Text Available Abstract Background Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic and workers (health of caregiver-friendly workplace policy intervention(s for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s? Methods Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s in each participating workplace in order to determine: the degree of support for the intervention(s (reflected in the workplace culture; how sex and gender are implicated; co

Recruitment strategies for caregivers of children with mental health problems.

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Oruche, Ukamaka M; Gerkensmeyer, Janis E; Austin, Joan K; Perkins, Susan M; Scott, Eric; Lindsey, Laura M; Mullins, Kristen

2012-01-01

The aim of this study was to describe strategies for recruiting participants into an intervention study that focused on improving problem-solving skills in caregivers of children with mental health problems. Caregivers of children with mental health problems report feeling physically and psychologically overwhelmed and have high rates of depression because of the demands of caregiving. Research on the needs of these caregivers and interventions to ameliorate their stress is needed. However, recruiting this population can be particularly difficult because of the stigma of mental illness. Available literature on recruitment of caregivers of persons with physical illness cannot be transferred to caregivers of children with mental health problems because of the different caregiving situations. There is a need to identify effective recruitment strategies to reduce cost and answer research questions. Clinical nurse specialists have the skills to facilitate the recruitment of research participants. We revised and expanded health system referrals, community outreach, and recruiting advertisement (ads). When these strategies did not increase recruitment, radio ads were used. The Andersen's Behavioral Model of Health Services Utilization was selected as a guiding framework. Radio ads were the most effective strategy for recruiting caregivers of children with mental health problems for this study. Recruitment was ultimately successful because we were flexible and made decisions consistent with the Andersen's Behavioral Model of Health Services Utilization. Clinical nurse specialists who study this population of caregivers should really consider the use of radio ads and systematically track which recruitment strategies lead to the greatest number of participants screened, eligible, and enrolled into studies.

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

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

2018-03-19

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

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

African Journals Online (AJOL)

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

Projecting social support needs of informal caregivers in Malaysia.

Science.gov (United States)

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

2014-03-01

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

Using Twitter to recruit participants for health research: An example from a caregiving study.

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Wasilewski, Marina Bastawrous; Stinson, Jennifer N; Webster, Fiona; Cameron, Jill Irene

2018-05-01

Twitter has the potential to optimize research conduct, but more research is needed around the nature of study-related tweets and strategies for optimizing reach. In the context of our caregiving study, we aimed to describe the nature and extent of study-related tweets, the extent to which they were shared by others, and their potential reach. To do so, we conducted a secondary analysis of our Twitter recruitment. We aggregated and categorized study-related tweets and analyzed the reach of the 10 most retweeted tweets. Results indicated that of 71 caregivers, 27 were recruited via Twitter. General recruitment tweets were most-shared by users. Tweet reach ranged from 5273 to 62,144 users. Twitter caregivers were demographically comparable to non-Twitter caregivers but had higher Internet proficiency and fewer children. Overall, using a personal Twitter account can expand the reach of study recruitment. Future research should compare different recruitment strategies and explore characteristics that may challenge the heterogeneity of Twitter samples.

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

Science.gov (United States)

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

2011-06-01

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

Challenges faced by caregivers of children on antiretroviral therapy at Mutale Municipality selected healthcare facilities, Vhembe District, Limpopo Province.

Science.gov (United States)

Mafune, Rhudzani V; Lebese, Rachel T; Nemathaga, Livhuwani H

2017-08-28

Children depend solely on caregivers who can be either parents or guardians for drug administration to enhance adherence to antiretroviral treatment (ART), which might pose any number of challenges. The purpose of this study was to explore and describe the challenges faced by caregivers of children on ART at Mutale Municipality, Vhembe District, Limpopo Province. The research design was qualitative, explorative, descriptive and contextual in nature. The population consisted of 16 caregivers who were 18 years of age and above, and mentally capable, irrespective of educational qualifications, caring for children aged between 0 and 15 years who were on ART between April 2013 and October 2014. Non-probability, purposive sampling was used to select the 16 caregivers. Required permission, approval and ethical clearance were obtained from the University of Venda Higher Degree Committee, Limpopo Provincial Health Department and relevant institutions. An in-depth, individual, unstructured interview method was used to collect data. One central question was asked: 'What are the challenges you experience when caring for a child on antiretroviral treatment?' Subsequent questions were based on the participants' responses to the central question. Qualitative data were analysed by means of Tesch's open-coding method. The findings of this study revealed that participants, that is, caregivers of children on ART, experienced financial burdens because of transport costs needed to comply with follow-up dates and insufficient of money for food, clothing the child in need of care, pocket money for lunch boxes during school hours and time lost while waiting for consultations. Participants reported some level of stigmatisation against children on ART by family members, especially the husbands or in-laws of the secondary caregivers. Many primary and secondary caregivers seemed to have given up seeking support from government and community structures. The conclusions drawn from this research

A dyadic analysis of stress processes in Latinas with breast cancer and their family caregivers.

Science.gov (United States)

Segrin, Chris; Badger, Terry A; Sikorskii, Alla; Crane, Tracy E; Pace, Thaddeus W W

2018-03-01

Breast cancer diagnosis and treatment negatively affect quality of life for survivors and their family caregivers. The stress process model has been useful for describing the cascade of social and psychological experiences that culminate in degraded quality of life for both survivors and their family caregivers. This study is designed to test theoretically specified predictors of negative psychosocial outcomes in a dyadic context. Participants were 230 dyads composed of Latinas recently diagnosed with breast cancer and their primary family caregiver, who completed measures of socioeconomic status, stress, family conflict, depression, and anxiety. Data were analyzed following the Actor-Partner Interdependence Mediation Model in structural equation modeling. For both survivors and caregivers, there were significant direct and indirect actor effects (through family conflict) of perceived stress on depression and anxiety. Several indirect partner effects were also evident in this sample. Specifically, caregivers' stress was predictive of survivors' depression and anxiety through survivors' increased perceptions of family conflict. As predicted by the stress process model, stress and family conflict were predictive of psychological distress in breast cancer survivors and their family caregivers. Significant partner effects in the Actor-Partner Interdependence Mediation Model suggest that there are some dyadic influences, particularly from caregivers' stress to survivors' perceptions of exacerbated family conflict. These findings show how strained family relationships can aggravate the well-being of cancer survivors and their family caregivers through this challenging experience. Copyright © 2017 John Wiley & Sons, Ltd.

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

Directory of Open Access Journals (Sweden)

Carla Raymondalexas Marchira

2016-02-01

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

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

Science.gov (United States)

Toyama, Hiroko; Honda, Akiko

2016-01-01

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

Family Conflict as a Mediator of Caregiver Strain

Science.gov (United States)

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

2006-01-01

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

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

OpenAIRE

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

2014-01-01

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

Caregiver and adolescent mental health in Ethiopian Kunama refugees participating in an emergency education program.

Science.gov (United States)

Betancourt, Theresa S; Yudron, Monica; Wheaton, Wendy; Smith-Fawzi, Mary C

2012-10-01

To examine the role of caregiver mental health and risk and protective factors in influencing levels of internalizing and externalizing emotional and behavioral symptoms over time among a sample of refugee adolescents. Prospective study of 153 Kunama refugee adolescents receiving an emergency education intervention while living in a camp in Ethiopia. Surveys were collected in 2001 (T1) and 2002 (T2). Adolescent and caregiver mental health were assessed using a Kunamenga adaptation of the Youth Self Report; caregiver mental health was assessed using the Hopkins Symptom Checklist-25. Attitudes toward education, satisfaction with education programming, socioeconomic status, and perceptions of access to services were also explored as variables potentially influencing adolescent mental health at follow-up. Caregiver distress was significantly associated with youth externalizing behavior symptoms (β = 8.34, p effect on externalizing behaviors (β = -7.54, p effect on internalizing symptoms. In terms of modifying effects, among youth with distressed caregivers, those who were satisfied with the International Rescue Committee education intervention had a lower internalizing score (β = -6.34, p refugee displacement. Results suggest that programs targeting mental health in refugee children should consider children within the larger family system, including caregiver influence on child and adolescent mental health adjustment over time. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.

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Camic, Paul M; Baker, Erin L; Tischler, Victoria

2016-12-01

Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. © 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.

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

Science.gov (United States)

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

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

Supporting home hospice family caregivers: Insights from different perspectives.

Science.gov (United States)

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.

Contingency management adapted for African-American adolescents with obesity enhances youth weight loss with caregiver participation: a multiple baseline pilot study.

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Hartlieb, Kathryn Brogan; Naar, Sylvie; Ledgerwood, David M; Templin, Thomas N; Ellis, Deborah A; Donohue, Bradley; Cunningham, Phillippe B

2015-12-07

Contingency management (CM) interventions, which use operant conditioning principles to encourage completion of target behavioral goals, may be useful for improving adherence to behavioral skills training (BST). Research-to-date has yet to explore CM for weight loss in minority adolescents. To examine the effects of CM in improving adolescent weight loss when added to BST. The study utilized an innovative experimental design that builds upon multiple baseline approaches as recommended by the National Institutes of Health. Six obese African-American youth and their primary caregivers living in Detroit, Michigan, USA. Adolescents received between 4 and 12 weeks of BST during a baseline period and subsequently received CM targeting weight loss. Youth weight. Linear mixed effects modeling was used in the analysis. CM did not directly affect adolescent weight loss above that of BST (p=0.053). However, when caregivers were involved in CM session treatment, contingency management had a positive effect on adolescent weight loss. The estimated weight loss due to CM when caregivers also attended was 0.66 kg/week (pcontingency management for minority youth weight loss. Lessons learned from contingency management program implementation are also discussed in order to inform practice.

Hospitalized elders and family caregivers: a typology of family worry.

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Li, Hong

2005-01-01

This qualitative study explored the kinds of worry that family caregivers experience when their older relatives are hospitalized. Little is known about what kinds of worries family caregivers may have in association with the hospitalizations of older relatives. An understanding of the different patterns of family worry may help health care teams intervene more effectively to meet family caregiver's needs by reducing their anxiety. A qualitative descriptive design with Loftland and Loftland (1984) approach for the study of a phenomenon occurring in a social setting was used. A purposeful sample of 10 participants was obtained that included six family caregivers and four nurses. Participants were recruited from two hospitals in the northwest US. Intensive interviews and participant observations were used for data collection, and Loftland and Loftland's (1984) qualitative approach was used for data analysis. Family worry was defined as family caregivers' felt difficulty in fulfilling their roles because of worry. Four categories of family worry were identified as a result of this study: (i) worry about the patient's condition; (ii) worry about the patient's care received from the health care team; (iii) worry about future care for the patient provided by the family caregiver; and (iv) worry about finances. The findings of this pilot study provide nurses with the initial knowledge of the typology of family worry associated with elderly relatives' hospitalizations. The findings of this study may sensitize the nurses to more precisely evaluate family caregivers' worry about their hospitalized elders and provide more effective nursing interventions to improve outcomes of both patients and their family caregivers.

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

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

2016-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55...

Qualification of the family caregiver to the application of the Educational Technology in Health.

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Santos, Paula Dayanna Sousa Dos; Santos, Zélia Maria de Sousa Araújo; Diógenes, Léa Maria Moura Barroso; Caldas, José Manuel Peixoto de; Rodrigues, Kátia Alves Ferreira; Carneiro, Rithianne Frota

2018-05-01

To evaluate the changes in the participation of the family caregiver in the treatment of the hypertensive person with the application of the Educational Technology in Health (ETH). Participant research carried out in a Primary Health Care Unit with 11 family caregivers (FC). The ETH was elaborated based on health education and applied in ten meetings between June and August 2016. We organized the results into categories. FCs experienced learning experiences through the exchange of information, socialization of experiences, and linkage establishments. The FCs were encouraged to share their doubts and experiences, so that, supported by listening to the professional, they felt welcomed and determined to fulfill their role with hypertensive relatives. Final considerations: The changes that have taken place have been highlighted in the learning of FCs and their commitment to family and self-care, as well as to the conviction that the family environment is indicated to make these changes effective.

Social support moderates caregiver life satisfaction following traumatic brain injury.

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Ergh, Tanya C; Hanks, Robin A; Rapport, Lisa J; Coleman, Renee D

2003-12-01

Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.

Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver Syndrome in Taiwan.

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Weng, Hsin-Ju; Niu, Dau-Ming; Turale, Sue; Tsao, Lee-Ing; Shih, Fu-Jong; Yamamoto-Mitani, Noriko; Chang, Chun-Chi; Shih, Fu-Jin

2012-01-01

To extend nursing knowledge of distress experienced by family caregivers of children with rare genetic disorders, by exploring the perspectives of caregivers of children with Russell-Silver Syndrome in Taiwan. Caring for a child with a rare genetic disorder often has profound effects on families, especially when diagnosis and treatment is complex or not yet well developed, such as that in Russell-Silver Syndrome (or Silver-Russell syndrome). This disorder causes dwarfism and developmental difficulties, requiring long-term care planning. Previous research has focused mostly on medical care, but little is known about families' perspectives of caring difficulties, the help they need and nursing care required. An exploratory qualitative approach was used to inform this study. Family caregivers, whose children were undergoing medical care in a leading Taiwan medical centre, were invited to participate in face-to-face, in-depth interviews. Data were analysed by content analysis. Fifteen caregivers including 11 mothers, two fathers and two grandmothers participated. Five major themes and 13 sub-themes of care-giving distress were identified: endless psychological worries; the lengthy process to confirm a medical diagnosis; adjustment efforts in modifying family roles; dilemmas in deciding between Western or Chinese traditional medicine; and negative responses to society's concerns. Their primary sources of support were spouses, parents and health professionals, accordingly. Complex physio-psycho-social and decision-making distress in caring for children with a rare genetic disorder were systematically revealed from the perspectives of ethnic-Chinese family caregivers. Long-term care plans for children with a rare genetic disorder such as Russell-Silver Syndrome need to focus on positive dynamic family interactions, life-stage development and family caregiver support. Research on care-giving in rare genetic disorders is also warranted across cultures and countries to

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

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Mochari-Greenberger, Heidi; Mosca, Lori

2012-01-01

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

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

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

2013-12-01

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

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

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Kong, Eun-Hi

2007-03-01

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

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

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White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

2018-01-01

There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

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

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

2016-01-01

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

Addressing cancer patient and caregiver role transitions during home hospice nursing care.

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Hudson, Janella; Reblin, Maija; Clayton, Margaret F; Ellington, Lee

2018-05-15

Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits.ResultNineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.Significance of resultsOur findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Attitudes, beliefs, and perceptions of caregivers and rehabilitation providers about disabled children's sleep health: a qualitative study.

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Chen, Xiaoli; Gelaye, Bizu; Velez, Juan Carlos; Pepper, Micah; Gorman, Sara; Barbosa, Clarita; Zafonte, Ross D; Redline, Susan; Williams, Michelle A

2014-10-01

Children with disabilities are more likely to have sleep disturbances than children without disabilities. Identifying attitudes, beliefs, knowledge, and perceptions of caregivers and health professionals is essential in developing effective intervention programs to improve disabled children's sleep health. However, no such qualitative data about adults who have key roles in the life and daytime activities of children with disabilities are available. This qualitative study aimed to understand attitudes, beliefs, knowledge, and perceptions about disabled children's sleep hygiene among caregivers and rehabilitation providers of children with disabilities. Twenty seven adults, including nine primary caregivers and eighteen rehabilitation providers, participated in five focus group discussions between September and December 2012 at the Rehabilitation Center in Punta Arenas, Chile. A trained facilitator guided focus group discussions using a semi-structured script. Audiotapes and transcripts of focus group discussions were reviewed and analyzed for recurrent themes. Participants identified seven themes related to children's sleep hygiene: lifestyle behaviors, family factors, children's disabilities and/or comorbidities, environmental factors, adults' responsibilities for children's sleep, perception of good sleep, and parental distress about children's sleep problems. While both caregivers and rehabilitation providers recognized the importance of sleep for children's health and functioning, they differed in their understanding of how sleep hygiene practices influence sleep. Rehabilitation providers recognized the negative influence of electronics on sleep and the positive influence of sleep routines. In contrast, caregivers reported use of television/movie watching and stimulants as coping strategies for managing children's sleep problems. Caregivers may benefit from better understanding the influence of electronics and stimulant use on child sleep health. Rehabilitation

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

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Orta OR

2016-06-01

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

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

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

2013-03-01

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

Family Typology and Appraisal of Preschoolers' Behavior by Female Caregivers.

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Coke, Sallie P; Moore, Leslie C

2015-01-01

Children with vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic, and therefore, research examining the accuracy of the caregivers' perceptions of children's behaviors is needed. The purpose of this study was to use the resiliency model of family stress, adjustment, and adaptation as the theoretical foundation to explore family factors associated with the primary female caregiver's appraisal of her child's behavior, the extent to which the primary female caregiver's appraisal of her child's behavior may be distorted, and the child's level of risk of having a behavioral problem. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers (N = 117). Family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children's behaviors, and distortion in the ratings were measured. Associations were studied using ANOVA, ANCOVA, and chi-squared tests. Family typology was not associated with the female caregiver's appraisals of her child's behavior (p = .31). Distortion of the caregiver's rating of her child's behavior was not associated with family hardiness (high or low; p = .20.) but was associated with having a child with an elevated risk for behavioral problems (p < .01). Families classified as vulnerable were significantly more likely to have a child with elevated risks of having behavioral problems than families classified as secure or regenerative. Findings emphasized the association between family factors (hardiness and coherence) and young children's behaviors. Additional research is needed into how these factors affect the young child's behavior and what causes a caregiver to have a distorted view of her child's behavior.

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.

"We both just trusted and leaned on the Lord": a qualitative study of religiousness and spirituality among African American breast cancer survivors and their caregivers.

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Sterba, Katherine Regan; Burris, Jessica L; Heiney, Sue P; Ruppel, Megan Baker; Ford, Marvella E; Zapka, Jane

2014-09-01

Most breast cancer (BC) survivorship research focuses on the general population of survivors. Scant research investigates the potentially unique experiences of minorities, especially during and after the difficult transition from primary treatment to post-treatment. This qualitative study explored African American BC survivors' and caregivers' quality-of-life in the post-treatment period with a focus on social and spiritual well-being. Participants included a convenience sample of African American women with stage I-III BC (N = 23) who completed treatment 6-24 months before enrollment. Primary caregivers (N = 22) included friends, spouses and other family members (21 complete dyads). Participants completed separate semi-structured telephone interviews. Template analysis was used to evaluate themes related to religiousness and spirituality, both across and within dyads. After treatment, religiousness and spirituality played a major role in both survivors' and caregivers' lives by: (1) providing global guidance, (2) guiding illness management efforts and (3) facilitating recovery. Participants described a spiritual connectedness with God and others in their social networks. Dyad members shared the goal of keeping a positive attitude and described positive growth from cancer. Few future concerns were expressed due to the belief that survivors were healed and "done" with cancer. Beyond practical and emotional support, provision of spiritual assistance was common. Results highlight the principal, positive role of religiousness and spirituality for African American BC survivors and caregivers after treatment. Findings emphasize the need to assess the importance of religious and spiritual beliefs and practices, and if appropriate, to provide resources that promote spiritual well-being.

Cognitive Development and Home Environment of Rural Paraguayan Infants and Toddlers Participating in Pastoral del Nino, an Early Child Development Program

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Peairson, Shannon; Austin, Ann M. Berghout; de Aquino, Cyle Nielsen; de Burro, Elizabeth Urbieta

2008-01-01

Participants included 106 infants and toddlers living in rural Paraguay and their primary caregiver. Children ranged in age from birth to 24 months and belonged to two distinct groups, including 46 children who had never participated in Pastoral del Nino, an early child development program, and 60 children who had participated in Pastoral for at…

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

Directory of Open Access Journals (Sweden)

Christian J. Hendriksz MD

2014-07-01

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

Behavior characterization of informal caregivers of wounded patients in the hospital environment

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Taynara Kelly Guimarães

2017-11-01

Full Text Available Wound care in the hospital environment continues at home after discharge and performed by the informal caregiver. The objective of this study was to characterize the behavior of the informal caregiver during the treatment of wounds in hospitalized patient. This is a prospective study with 39 caregivers of wounded patients in a university hospital in the Brazilian Midwest. We collected the data through direct non-participant observation and interview. We found that 94.9% of the caregivers remained in the ward during the dressing. Of these, 97.3% were close to the patient; 73% observed closely; 54.1% were familiar to the evolution of the wound; 59.5% were involved in the procedure and questioned about the dressing and/or used materials. Most caregivers of persons hospitalized with wounds are interested in and somehow participate of the dressing procedure. The nursing staff can take advantage of such moments to guide the caregivers and prepare them for homecare.

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

NARCIS (Netherlands)

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

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

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Essex, Elizabeth Lehr; Hong, Jinkuk

2005-01-01

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

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

NARCIS (Netherlands)

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

2018-01-01

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

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

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Anngela-Cole, Linda; Hilton, Jeanne M

2009-01-01

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

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.

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

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

2008-01-01

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

The Complexities of Family Caregiving at Work: A Mixed-Methods Study.

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Gaugler, Joseph E; Pestka, Deborah L; Davila, Heather; Sales, Rebecca; Owen, Greg; Baumgartner, Sarah A; Shook, Rocky; Cunningham, Jane; Kenney, Maureen

2018-01-01

The current project examined the impact of caregiving and caregiving-work conflict on employees' well-being. A sequential explanatory mixed-methods design (QUAN→qual) was utilized, and a total of 880 employees from a large health-care plan employer completed an online survey. Forty-five caregivers who completed the survey also participated in one of the five focus groups held 1 to 2 months later. Employed caregivers were significantly ( p < .05) more likely to indicate poorer physical and mental health than noncaregivers; among caregivers ( n = 370), caregiving-work conflict emerged as the most significant predictor of well-being and fully mediated the empirical relationship between burden and well-being. The focus group findings complemented the quantitative results; many of the challenges employed caregivers experience stem from their ability or inability to effectively balance their employment and caregiving roles. The results suggest the need to focus on caregiving-work conflict when constructing new or translating existing evidence-based caregiver interventions.

The Art of Sharing the Diagnosis and Management of Alzheimer's Disease With Patients and Caregivers: Recommendations of an Expert Consensus Panel

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Christensen, Daniel D.; Griffith, Patrick A.; Kerwin, Diana R.; Hunt, Gail; Hall, Eric J.

2010-01-01

Objective: To develop a set of recommendations for primary care physicians (PCPs) suggesting how best to communicate with patients, caregivers, and other family members regarding the diagnosis and management of Alzheimer's disease (AD). Participants: A national roundtable of 6 leading professionals involved in treating or advocating for patients with AD was convened on March 14, 2008. This roundtable included 4 leading academic physicians with diverse backgrounds (a geriatric psychiatrist, a neuropsychiatrist, a neurologist, and a geriatrician) from geographically diverse regions of the United States, who were invited on the basis of their national reputation in the field and experience working with minority populations with dementia; the executive director of a national AD advocacy organization; the executive director of a national advocacy organization for caregivers; and a medical correspondent with expertise in interviewing and small group leadership. Evidence: Expert opinion supported by academic literature (search limited to PubMed, English language, 1996–2008, search terms: Alzheimer's disease, primary care, diagnosis, management, caregiver, family, patient-physician relationship). Consensus Process: Moderated dialogue aimed at generating consensus opinion; only statements endorsed by all authors were included in the final article. Conclusions: Diagnosis and management of AD by PCPs, utilizing specialist consultation as needed, may contribute to earlier diagnosis and treatment, improved doctor-patient and doctor-caregiver communication, increased attention to caregiver needs, and better clinical and quality-of-life outcomes for patients and caregivers. A set of expert panel recommendations describing practical strategies for achieving these goals was successfully developed. PMID:20582302

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

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Mitchell, Mary M; Knowlton, Amy

2009-08-01

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

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

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Cappa, Claudia; Khan, Shane M

2011-12-01

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

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

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

2011-01-01

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

Caregiver Asthma in Urban Families: Implications for School Absenteeism

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Everhart, Robin S.; Miller, Sarah; Leibach, Gillian G.; Dahl, Alexandra L.; Koinis-Mitchell, Daphne

2018-01-01

Asthma is a significant contributor to missed school days, especially for children living in urban settings. This preliminary study examined the impact of caregiver asthma on school absenteeism in a sample of 102 urban children with asthma from African American, Latino, and non-Latino White backgrounds. Caregivers and children participated in a…

Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

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

2015-07-01

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

Associations between advanced cancer patients' survival and family caregiver presence and burden.

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Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A

2016-05-01

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by

South Korean Family Caregiver Involvement in Delirium Care: A Qualitative Descriptive Study.

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Kang, Yun; Moyle, Wendy; Cooke, Marie; O'Dwyer, Siobhan

2017-12-01

The current study aimed to describe the effect of an educational program on RN-initiated efforts to involve family caregivers in delirium care. A descriptive qualitative study was performed. A purposive sample of 12 RNs who participated in a one group, pre-post evaluation of a delirium educational program, and a nominated sample of six family caregivers of patients who had been cared for by RNs in the program participated in individual, in-depth interviews. The qualitative findings indicated that the inclusion of a delirium brochure in ward orientation on admission, with reinforcement during shift changes, and RN-initiated engagement with family caregivers promoted family caregiver involvement in delirium prevention. Further studies in South Korea are needed to determine which family-centered nursing care interventions are culturally appropriate and most effective for RNs and family caregivers in delirium care. [Journal of Gerontological Nursing, 43(12), 44-51.]. Copyright 2017, SLACK Incorporated.

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.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

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Dako-Gyeke, Mavis

2018-01-01

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy. Copyright © 2017 Elsevier Ltd. All rights reserved.

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

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

2015-07-01

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

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

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

2017-07-01

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

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

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

2017-12-01

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

Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters.

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Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L

To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.

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

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

2015-11-01

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

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.

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

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

2007-04-01

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

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

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

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

2012-01-01

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

Evaluation of chronic stress indicators in geriatric and oncologic caregivers: a cross-sectional study.

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Aguiló, Sira; García, Esther; Arza, Adriana; Garzón-Rey, Jorge M; Aguiló, Jordi

2018-01-01

Caregiving induces chronic stress with physical and psychological impact on informal caregivers health. Therefore, subjective and objective indicators are needed for the early diagnosis of pathologic stress to prevent the risk of developing stress-related diseases in caregivers. Our aim was to assess the self-perceived stress, that is, how and how much the stressor affects the individual, through endocrine, metabolic, and immunologic biomarkers levels in geriatric and oncologic informal caregivers. Informal caregivers and non-caregivers were invited to participate in a cross-sectional study at the Clinic Hospital of Barcelona. Demographic and lifestyle characteristics, self-perceived stress (Perceived Stress Scale, State-Trait Anxiety Inventory and Stress Visual Analogue Scale), and biomarkers (copeptin, glucose, glycated hemoglobin, low-density lipoprotein cholesterol (LDL), high-density lipoprotein cholesterol (HDL), cholesterol, triglycerides, α-amylase, cortisol, tumor necrosis factor (TNF-α), and Interleukins (IL-6 and IL-10)) were evaluated. Descriptive and non-parametric statistical data analysis were performed. Fifty-six subjects (19 non-caregivers, 17 geriatric caregivers, and 20 oncologic caregivers) participated. Median age (IQR) was 57 years (47-66) and 71.46% were women. Self-perceived stress was higher in oncologic caregivers than geriatric caregivers in all psychometric test analyzed (Wilcoxon Rank Sum test, p value  .05). These findings suggest that perceived stress is not homogeneous in the caregivers community and thus these two groups could be differentiated. These results provide the baseline information to initiate social actions addressed to each group of caregivers to increase their wellbeing.

Usages of Computers and Smartphones to Develop Dementia Care Education Program for Asian American Family Caregivers.

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Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen

2017-10-01

Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.

Translating knowledge for action against stroke--using 5-minute videos for stroke survivors and caregivers to improve post-stroke outcomes: study protocol for a randomized controlled trial (Movies4Stroke).

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Kamal, Ayeesha Kamran; Khoja, Adeel; Usmani, Bushra; Muqeet, Abdul; Zaidi, Fabiha; Ahmed, Masood; Shakeel, Saadia; Soomro, Nabila; Gowani, Ambreen; Asad, Nargis; Ahmed, Asma; Sayani, Saleem; Azam, Iqbal; Saleem, Sarah

2016-01-27

Two thirds of the global mortality of stroke is borne by low and middle income countries (LMICs). Pakistan is the world's sixth most populous country with a stroke-vulnerable population and is without a single dedicated chronic care center. In order to provide evidence for a viable solution responsive to this health care gap, and leveraging the existing >70% mobile phone density, we thought it rational to test the effectiveness of a mobile phone-based video intervention of short 5-minute movies to educate and support stroke survivors and their primary caregivers. Movies4Stroke will be a randomized control, outcome assessor blinded, parallel group, single center superiority trial. Participants with an acute stroke, medically stable, with mild to moderate disability and having a stable primary caregiver will be included. After obtaining informed consent the stroke survivor-caregiver dyad will be randomized. Intervention participants will have the movie program software installed in their phone, desktop, or Android device which will allow them to receive, view and repeat 5-minute videos on stroke-related topics at admission, discharge and first and third months after enrollment. The control arm will receive standard of care at an internationally accredited center with defined protocols. The primary outcome measure is medication adherence as ascertained by a locally validated Morisky Medication Adherence Scale and control of major risk factors such as blood pressure, blood sugar and blood cholesterol at 12 months post discharge. Secondary outcome measures are post-stroke complications and mortality, caregiver knowledge and change in functional outcomes after acute stroke at 1, 3, 6, 9 and 12 months. Movies4Stroke is designed to enroll 300 participant dyads after inflating 10% to incorporate attrition and non-compliance and has been powered at 95% to detect a 15% difference between intervention and usual care arm. Analysis will be done by the intention

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

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

2012-04-01

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

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

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

2015-01-01

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

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.

Views on the Effects of the Spanish Dependency Law on Caregivers' Quality of Life Using Concept Mapping.

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Salvador-Piedrafita, María; Malmusi, Davide; Mehdipanah, Roshanak; Rodríguez-Sanz, Maica; Espelt, Albert; Pérez, Cristina; Solf, Elisabeth; Abajo Del Rincón, María; Borrell, Carme

2017-04-01

In 2006 the Spanish Dependency Law established new rights for people in situation of dependency. The impact of the Law could have also affected the quality of life of their carers. This study aims to understand how the Law may have influenced caregivers' quality of life through their own perceptions and those of Primary Health Care professionals, and to compare both perspectives. The study used Concept Mapping, a mixed methods technique. In total, 16 caregivers and 21 professionals participated. Both groups identified a mix of positive and negative effects. Uncertainties and delays in granting benefits were reported. However, several advantages were identified, such as the possibility of sharing the burden of care, thus reducing its physical, mental and social consequences, while at the same time being able to maintain responsibility. Most of the mechanisms identified were common to both caregivers and professionals; the most notable differences were that the latter attached more importance to economic support and less to the negative effects of implementation of the Law. This study reveals positive effects of the Law on caregivers' quality of life and the potential for improvement of some negative aspects in its implementation related with the context of austerity.

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

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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.

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

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

2018-01-22

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

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

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Greenfield, Wilma L.

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

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

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Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

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

An Exploration of Volition: Caregiver Perceptions of Persons with Dementia

Directory of Open Access Journals (Sweden)

Christine Raber, PhD, OTR/L

2015-01-01

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

The effect of a brief family intervention on primary carer's functioning and their schizophrenic relatives levels of psychopathology in India.

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Devaramane, Virupaksha; Pai, Nagesh B; Vella, Shae-Leigh

2011-09-01

This study examined the short term effects of a brief familial intervention on schizophrenic the patient's levels of psychopathology and their primary caregiver's functioning in India. Caregiver functioning was measured by the caregiver's levels of burden and coping along with the patient's perceived level of expressed emotion (EE). The participants were 18 schizophrenic patients and their related primary carer from a medical facility in India. The patients' levels of psychopathology and EE were assessed at baseline and at completion of the study with the Positive and Negative Syndrome Scale (PANSS; Kay et al., 1987) and the Family Emotional Involvement And Criticism Scale (FEICS; Shields et al., 1992), respectively. The primary caregiver's levels of burden and coping were also measured at baseline and upon completion of the study by the Burden Assessment Scale (BAS; Thara et al., 1998) and the Family Crisis Oriented Personal Evaluation Scale (F-COPES; McCubbin et al., 1981), respectively. The brief intervention was comprised of 3 one hour sessions aimed at educating the primary caregiver and patient about schizophrenia; along with improving their communication, problem solving skills and expression of emotions. A significant improvement was found between baseline and the final 3-month follow-up on measures of psychopathology for the patients, as well as family functioning for both the caregivers and patients. The implications of the findings are discussed, along with future research directions. Crown Copyright © 2011. Published by Elsevier B.V. All rights reserved.

Reiki training for caregivers of hospitalized pediatric patients: a pilot program.

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Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A; Towle, Cara B; Doorenbos, Ardith Z

2013-02-01

To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant's feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child's care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. Copyright © 2012 Elsevier Ltd. All rights reserved.

Internet Use and Technology-Related Attitudes of Veterans and Informal Caregivers of Veterans.

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Duan-Porter, Wei; Van Houtven, Courtney H; Mahanna, Elizabeth P; Chapman, Jennifer G; Stechuchak, Karen M; Coffman, Cynthia J; Hastings, Susan Nicole

2017-12-18

Healthcare systems are interested in technology-enhanced interventions to improve patient access and outcomes. However, there is uncertainty about feasibility and acceptability for groups who may benefit but are at risk for disparities in technology use. Thus, we sought to describe characteristics of Internet use and technology-related attitudes for two such groups: (1) Veterans with multi-morbidity and high acute care utilization and (2) informal caregivers of Veterans with substantial care needs at home. We used survey data from two ongoing trials, for 423 Veteran and 169 caregiver participants, respectively. Questions examined Internet use in the past year, willingness to communicate via videoconferencing, and comfort with new technology devices. Most participants used Internet in the past year (81% of Veterans, 82% of caregivers); the majority of users (83% of Veterans, 92% of caregivers) accessed Internet at least a few times a week, and used a private laptop or computer (81% of Veterans, 89% of caregivers). Most were willing to use videoconferencing via private devices (77-83%). A majority of participants were comfortable attempting to use new devices with in-person assistance (80% of Veterans, 85% of caregivers), whereas lower proportions were comfortable "on your own" (58-59% for Veterans and caregivers). Internet use was associated with comfort with new technology devices (odds ratio 2.76, 95% confidence interval 1.70-4.53). Findings suggest that technology-enhanced healthcare interventions are feasible and acceptable for Veterans with multi-morbidity and high healthcare utilization, and informal caregivers of Veterans. In-person assistance may be important for those with no recent Internet use.

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

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

2014-01-01

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

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.

The psychological impact of child sexual abuse on primary caregivers

African Journals Online (AJOL)

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

Maintaining the potential of a psycho-educational program: efficacy of a booster session after an intervention offered family caregivers at disclosure of a relative's dementia diagnosis.

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Ducharme, Francine; Lachance, Lise; Lévesque, Louise; Zarit, Steven Howard; Kergoat, Marie-Jeanne

2015-01-01

Booster sessions as a means of maintaining the benefits of psycho-educational programs have received little attention in caregiving research. Caregivers were offered a booster session following participation in a program entitled Learning to Become a Family Caregiver (LBFC) intended to facilitate transition to the caregiver role after diagnostic disclosure of dementia in a relative. The 90-minute booster session served to review program content and afforded the opportunity to discuss and practice learned skills. This study sought to test the efficacy of the booster session in maintaining or recovering program effects at six months post-program. Participants in the program were randomly assigned to a group that received the booster session (n = 31) or a group that did not (n = 29). A third control group was also formed, which continued to receive only the usual care provided in memory clinics. Eligible participants - French-speaking primary caregivers of a relative diagnosed with Alzheimer's in the past nine months - were recruited in memory clinics in Quebec (Canada). Participants were blindly assessed before randomization and six months after the booster session on outcomes associated with a healthy role transition. Prediction analyses revealed one significant positive effect of the booster session: emergence of preparedness to provide care. Moreover, with or without the booster session, the program continued to have a positive effect on psychological distress and contributed to the emergence of self-efficacy in dealing with caregiving situations. The booster session had no significant effect on knowledge of services, planning for future care needs, use of reframing as a coping strategy, perceived informal support, and family conflicts. The limited effect observed is discussed in terms of the booster session's content and intensity. Recommendations are made for designing future research on the effect of booster sessions, including the importance of including a

Narratives from caregivers of children surviving the terrorist attack in Beslan: issues of health, culture, and resilience.

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Moscardino, Ughetta; Axia, Giovanna; Scrimin, Sara; Capello, Fabia

2007-04-01

Acts of terrorism have an extremely negative impact on the mental health of children and families. The school siege in Beslan, Russia, in 2004, represents a particularly traumatizing event as it was directed specifically at children and involved the entire community. This qualitative study aims to: (a) examine caregiver reactions to the terrorist attack in Beslan as reported 3 months after the traumatic event; (b) determine the extent to which indigenous cultural values and religious belief systems play a role in Beslan's caregivers' reactions to such event; and (c) identify variables that may function as sources of resilience to caregivers. A convenience sample of 17 primary caregivers from Beslan with at least one child who survived the school siege were asked to participate in semi-structured interviews. Narratives generated from the interviews were qualitatively analyzed using a thematic approach; nine major themes were identified. Caregivers' concerns centered on children's physical and psychological well-being, the reorganization of family life, and the disruption of community ties. Cultural values of pride, heroism, courage, and revenge emerged as relevant aspects shaping caregivers' reactions to the traumatic event. Possible sources of resilience included the willingness to return to normality, social support, and the reaffirmation of positive, culturally shared values in face of the perceived threat of future terrorist attacks. Findings are discussed in terms of their theoretical implications on the effects of trauma on children and families as well as interventions with highly traumatized populations in diverse cultural settings.

Caregiver Involvement in the Education of Youth in Foster Care: An Exploratory Study

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Beisse, Kay; Tyre, Ashli

2013-01-01

This study was an exploratory investigation of caregiver involvement in the education of youth in foster care. In this study, foster caregivers reported that they are involved in the education of children in their care and participate in at-home involvement activities more often than at-school involvement activities. Caregivers in this study…

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

CAREGIVER BURDEN AMONG PEOPLE CARING FOR PATIENTS WITH SCHIZOPHRENIA

Directory of Open Access Journals (Sweden)

Shivani Bansal

2017-04-01

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

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

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Sorrell, Jeanne M

2014-03-01

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

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

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

2018-05-21

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

A Group Therapeutic Songwriting Intervention for Family Caregivers of People Living With Dementia: A Feasibility Study With Thematic Analysis.

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Baker, Felicity A; Stretton-Smith, Phoebe; Clark, Imogen N; Tamplin, Jeanette; Lee, Young-Eun C

2018-01-01

This study aimed to test the feasibility of implementing a group songwriting program with family caregivers (FCGs) of people living with dementia. Fourteen FCGs consented to participate in either the songwriting group ( n = 8) or control condition ( n = 6). Participants completed baseline and 7-week measures of depression (PHQ-9), perceptions of their caregiving experience (PACQ), and perceptions of their relationship with the care recipient (QCPR). A six-session group songwriting program was implemented across two sites, focusing on participants co-creating a song about their caregiving experiences. Participation and retention rates were high suggesting the intervention was acceptable. An observed pre-post effect size for the PHQ-9 in the experimental group ( d = 0.64) and control group ( d = -0.33) suggests the measure is sensitive to change over a short period of time in this population and has the potential to detect significant change in a larger controlled trial. Qualitative analysis of focus group interviews suggested the songwriting process allowed participants to share their entire caregiver journey with others, differentiating the intervention from standard carer support groups. Participants described group songwriting as enabling them to find connections with other caregivers, create a group identity, and gain insight into their carer journey, subsequently leading to the development of inner strength and personal growth. Qualitative findings suggest coping may be a more relevant construct to measure than caregiver-patient relationship quality or caregivers' perception of caregiving.

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

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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.

Leisure, gender, and kinship in dementia caregiving: psychological vulnerability of caregiving daughters with feelings of guilt.

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Romero-Moreno, Rosa; Losada, Andrés; Marquez, María; Laidlaw, Ken; Fernández-Fernández, Virginia; Nogales-González, Celia; López, Javier

2014-07-01

The moderator role of guilt on the effect of leisure activities on dementia caregivers' depressive symptoms was analyzed, considering differences by kinship and guilt as a multidimensional construct. Participants were 351 caregivers (58.97% daughters, 10.54% sons, 19.66% wives, and 10.83% husbands). Measures included frequency of leisure activities, depressive symptoms, and guilt (total scale and 5 factors). A moderator role of guilt was found only for daughters. Specifically, significant interactions between guilt and frequency of leisure activities were found for the total scale and for the Factors 1 (guilt about doing wrong by the care recipient), 2 (guilt about failing to meet the challenges of caregiving), and 3 (guilt about self-care). For those daughters who reported lower levels of leisure activities, showing higher levels of guilt was associated with higher scores in depressive symptoms, whereas those with lower levels of guilt showed lower depressive symptoms scores. Feelings of guilt may have different consequences on caregivers' distress depending on caregivers' gender and kinship. Daughters with higher levels of guilt who do not engage in leisure activities may be especially vulnerable to suffering psychological distress. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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

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Hsiao, Chiu-Yueh

2010-12-01

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

Caregiver coping with the mentally ill: a qualitative study.

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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.

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

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Yancura, Loriena A

2013-01-01

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

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.

Relationships between appraisals of caregiver communication strategies and burden among spouses and adult children.

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Savundranayagam, Marie Y; Orange, J B

2011-11-01

The purpose of this study was to investigate the impact of caregivers' appraisals of the effectiveness of their own communication strategies on caregiver burden when caring for family members with Alzheimer's disease (AD). Family caregivers (N = 84) of participants with AD completed questionnaires appraising communication strategies, problem behaviors, and levels of three types of burden. Hierarchical linear regression models revealed that effective strategies and kinship status were significantly linked with stress burden, whereas effective strategies and problem behaviors were significantly related to relationship burden. Cognitive status of participants with AD significantly predicted objective burden. Caregivers who rated effective strategies as helpful were more likely to experience lower levels of stress and relationship burden. Findings provide preliminary support for understanding mechanisms by which the appraisals of communication strategies influence caregiver burden and justify testing empirically derived communication interventions.

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

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

2015-04-01

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

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

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

2016-12-01

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

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

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

2017-10-01

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

Caregiver Depression

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

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

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

2014-10-27

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

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

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

2016-03-01

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

Perceptions of a cognitive rehabilitation group by older people living with cognitive impairment and their caregivers: A qualitative interview study.

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Moebs, Isabelle; Gee, Susan; Miyahara, Motohide; Paton, Helen; Croucher, Matthew

2017-05-01

Cognitive rehabilitation has been developed to improve quality of life, activities of daily living and mood for people with cognitive impairment, but the voice of people with cognitive impairment has been underrepresented. This study aimed to understand the experience of people living with cognitive impairment, as well as their caregivers who took part in a cognitive rehabilitation intervention programme. Twelve individuals with cognitive impairment and 15 caregivers participated in individual qualitative interviews. The interview data were analysed in three steps: 1) familiarisation of the transcripts; 2) identification of themes; 3) re-interpretation, refinement and integration of themes with methodological auditors. Both participants living with cognitive impairment and caregivers valued the comfortable environment with friendly, caring and supportive group leaders who taught practical tips and strategies. The participants living with cognitive impairment enjoyed socialising with like others. Caregivers benefited from learning about memory problems and sharing their challenges with other caregivers. The participants living with cognitive impairment emphasised the benefits of relational and practical aspects, whereas the caregivers valued the informational and emotional support. In conclusion, both participants living with cognitive impairment and caregivers found the cognitive rehabilitation group useful.

LGBT Caregiver Concerns

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

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

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

2009-01-01

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

A Customized Intervention for Dementia Caregivers: A Quasi-Experimental Design.

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Wawrziczny, Emilie; Larochette, Clotilde; Papo, David; Constant, Emilie; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2018-04-01

The aim of this study is to test the effects of a customized intervention on distress among caregivers of persons with dementia (PWD) using a quasi-experimental design. Fifty-one spouse caregivers in the experimental group and 51 in the control group participated in the study. The effects of the intervention were examined by comparing caregivers' responses with questionnaires at pre-intervention baseline (T0) and immediately after intervention (T1). Differences were quantified using repeated-measures ANOVA. The analyses indicated a stabilizing effect of the intervention on caregivers' perceptions of PWD's daily functioning, self-esteem related to caregiving, quality of family support, and feeling of distress. Linear increases were observed regarding sense of preparedness and impact on daily routine, while no differences (interaction and linear effects) were observed for degree of self-efficacy, depression, impact on finances, or self-rated health. These findings show a preliminary efficacy of the intervention proposed in this study to prevent the exacerbation of caregivers' distress.

Case Study: Caregiver Perception of Pediatric Multidisciplinary Feeding Outpatient Clinic

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Thomas F. Fisher PhD, OT, FAOTA

2014-01-01

Full Text Available This study explores the perception of satisfaction of caregivers who attended a feeding clinic at a large pediatric hospital in the midwest. The clinic is designed for a multidisciplinary team to meet with the child and the caregiver. Thirty-five participants were involved in the study. Results indicated that most participants were satisfied with the clinic experience. However, there were areas of care not covered by the members of the feeding team, which indicates a need. It is suggested that this need could be filled by occupational therapists.

Grandparent caregiving among rural African Americans in a community in the American South: challenges to health and wellbeing.

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Clottey, Emmanuel N; Scott, Alison J; Alfonso, Moya L

2015-01-01

An increasing number of grandparents in rural USA are serving as primary caregivers for their grandchildren because of parental incarceration, addiction, joblessness, or illness. Low-income, African American women from the South are overrepresented in this growing population. There is a paucity of research exploring the challenges faced by rural grandparent caregivers, and past studies have not explicitly addressed the potential consequences of rural grandparent caregiving for health. The purpose of this qualitative study was to explore grandparent caregiving among rural, low-income, African American grandmothers in a community in the American South, and to identify challenges to health that arose in that context. McLeroy's social ecological model (SEM) was used to examine these challenges at multiple levels of influence. This qualitative interview-based study was conducted in a high-poverty community in rural Georgia. In-depth interviews were conducted with African American grandparent caregivers and key informants from local community-based organizations. A key informant assisted in identifying initial interview participants, and then snowball sampling was used to recruit additional participants. Interview questions were grouped under five domains (intrapersonal, interpersonal, community, organizational, and policy), according to the levels of the SEM. Iterative content analysis of interview transcripts was utilized. Transcripts were coded to identify text segments related to each domain of the SEM, which were grouped together for analysis by domain. Reflexive memo-writing aided in development of themes, and data quality was assessed using Lincoln and Guba's trustworthiness criteria. Rural African American grandparent caregivers faced a range of challenges to health. Direct physical challenges included chronic pain that interfered with sleep and daily functioning, mobility issues exacerbated by child care, and the pressure of managing their own medical conditions

Extended child and caregiver benefits of behavior-based child contingency learning games.

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Dunst, Carl J; Raab, Melinda; Trivette, Carol M; Wilson, Linda L; Hamby, Deborah W; Parkey, Cindy

2010-08-01

Findings from 2 studies of the relationship between response-contingent child behavior and child, caregiver-child, and caregiver behavior not directly associated with child contingency learning are described. The participants were 19 children with significant developmental delays and their mothers in 1 study and 22 children with significant developmental delays and their teachers in the second study. Caregivers engaged the children in learning games characterized by behavior-based contingencies for 15 weeks. Research staff observed the children and their caregivers in everyday routines and activities and rated child and caregiver behavior while the children and caregivers were not playing the games. Results from both studies showed that the degree of response-contingent responding during the games was related to child and caregiver behavior, not the focus of the contingency learning opportunities afforded the children. Implications for practice are described.

Affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders in China: Effects of self-esteem, shame and family functioning.

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Zhou, Ting; Wang, Yiting; Yi, Chunli

2018-06-01

The present study aimed to investigate affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders (ASD) in China and to examine the predictive effects of self-esteem, shame proneness and family functioning. Two hundred and sixty-three primary caregivers of children with autism in Mainland China participated in the survey. The results suggested that affiliate stigma in caregivers of children with autism was prevalent and severe; their depressive symptoms were significantly more severe than the national norm of the similar age group. Low self-esteem, high shame proneness and poor family adaptability were associated with experience of affiliate stigma and heightened depressive symptoms. Affiliate stigma partially mediated the links between self-esteem/ shame proneness/family adaptability and depression levels. This study was the first one to measure affiliate stigma on caregivers of children with ASD in mainland China using a quantitative method. The results highlight the necessity and importance of de-stigmatization for the caregivers of children with autism and suggest that interventions to improve self-esteem, reduce experience of shame and to enhance family functioning might be effective. Copyright © 2018 Elsevier B.V. All rights reserved.

Information needs of neuro-oncology patients and their caregivers: a pilot study

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Khryshchuk, Olga

2012-07-01

Full Text Available BACKGROUND: Patients with primary brain tumors (PBT often have acute depression, anxiety and complications of social adaptation. The goal of this study was to examine difficulties and information needs of patients with PBT and their caregivers during diagnostic and treatment period. METHODS: Thirteen in-depth interviews were conducted with convenience sample of nine patients and four caregivers who were under treatment in the Kyiv “Feofaniya” clinic in October 2011 – April 2012. Convenience strategy was used because of poor availability of the target group. Data collection was stopped when saturation was achieved.RESULTS: PBT patients and their caregivers need information about diagnosis and prognosis, while uncertainty about the future is increased due to a long diagnostic period and delayed contacts with neuro-oncology professionals. In making decision, patients rely on the doctors, which confirms the paternalistic relationships. Most patients avoid talking about their feelings with the family and tend to deny the change of roles in the family due to illness. Those who consider chances of recovery as high express need for psychological support, but those who are emotionally suppressed and scared, don’t want to discuss their state with professionals. Caregivers also experience increased responsibility and fear about the future. Possibly, religious patients have lower information needs and willingness to discuss the disease and its treatment with the doctor. CONCLUSIONS: During the diagnostics patients face problems of uncertainty regarding the diagnosis, the availability of appropriate health professional, and the treatment strategy. Communication with doctor and quality of information provided to the patient is important as well as professional psychological support for patients and their caregivers. Limitations of the study include poor sample strategy, all participants were recruited from a single clinic, which is not the typical for

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.

Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer's Patients.

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Ho, Lap; Bloom, Patricia A; Vega, Joan G; Yemul, Shrishailam; Zhao, Wei; Ward, Libby; Savage, Evan; Rooney, Robert; Patel, Divyen H; Pasinetti, Giulio Maria

2016-06-01

Caregiving for a dementia patient is associated with increased risk of psychological and physical health problems. We investigated whether a mindfulness-based stress reduction (MBSR) training course for caregivers that closely models the MBSR curriculum originally established by the Center of Mindfulness at the University of Massachusetts may improve the psychological resilience of non-professional caregivers of Alzheimer's disease patients. Twenty adult non-professional caregivers of dementia patients participated in an 8-week MBSR training course. Caregiver stress, depression, burden, grief, and gene expression profiles of blood mononuclear cells were assessed at baseline and following MBSR. MBSR training significantly improved the psychological resilience of some of the caregivers. We identified predictive biomarkers whose expression is associated with the likelihood of caregivers to benefit from MBSR, and biomarkers whose expression is associated with MBSR psychological benefits. Our biomarker studies provide insight into the mechanisms of health benefits of MBSR and a basis for developing a personalized medicine approach for applying MBSR for promoting psychological and cognitive resilience in caregivers of dementia patients.

Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality

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Usha Chivukula

2018-01-01

Full Text Available Background: When a child is diagnosed with cancer the parents as caregivers experience severe anxiety, trauma, ambiguity, and grief. Caregivers of cancer patients thus deal with the management of their own psychological distress along with the child's illness.Aim: Coping plays a crucial role in improving the caregivers' physical and emotional well-being. Spirituality is an important means of consolation, strength, and emotional support during this phase. The present study aims to investigate the impact of coping and spirituality on caregiver burden.Methods: A total of 100 caregivers of children between the age group of 3–11 years, diagnosed with acute lymphoblastic leukemia were the participants of the study. The participants were recruited from cancer hospitals in Hyderabad. The study adopted a between-group design to find out if mothers and fathers differed in their coping strategies, spirituality, and caregiver burden. The study also adopted a correlation design to find the relationship between coping, spirituality, and caregiver burden. Descriptive statistics and multiple linear regression analysis were conducted to identify if coping and spirituality predict caregiver burden.Results: The results showed no significant difference in the burden experienced by both mothers and fathers; however, mothers and fathers used different coping strategies and differed on the dimensions of spirituality. The results of multiple linear regression indicated that dimensions of coping and spirituality were significant predictors of caregiver burden.Conclusion: Cancer in the child impacts the parent's burden but providing sufficient support and implementing effective coping strategies, will help in mitigating the intensity of caregiver burden. It is essential that the hospital authorities and policymakers understand that a professional health psychologist could be a liaison between the doctor, patient, and the caregiver in bringing down the levels of burden

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

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

2017-10-17

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

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

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

2018-04-01

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

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

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Ximena Palacios-Espinosa

2009-10-01

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

The 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.

Developing a falls prevention program for community-dwelling stroke survivors in Singapore: client and caregiver perspectives.

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Xu, Tianma; O'Loughlin, Kate; Clemson, Lindy; Lannin, Natasha A; Dean, Catherine; Koh, Gerald

2017-12-25

Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall. Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software. All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process. Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke

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

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

2012-01-01

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

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

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

2009-01-01

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

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

NARCIS (Netherlands)

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

2017-01-01

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

Experiences and challenges of informal caregiving for Korean immigrants.

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Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T; Lee, Jong Eun; Kim, Kim B

2008-09-01

This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives. A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 (1/2)-2 hours. Thematic analysis was conducted by two bilingual researchers. Three key themes were identified: the caregiver role - competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.

Barriers to meditation by gender and age among cancer family caregivers.

Science.gov (United States)

Williams, Anna-Leila; Ness, Peter Van; Dixon, Jane; McCorkle, Ruth

2012-01-01

Despite solid basic science research supporting meditation's physiologic benefits, meditation remains a marginalized practice for many Westerners; observational and descriptive studies indicate a spectrum of barriers to meditation practice. The aim of this study was to determine differences in barriers to meditation by gender and age. A cross-sectional survey study of 150 family caregivers to adults with cancer visiting an outpatient chemotherapy center in Connecticut was conducted. The primary outcome was the Determinants of Meditation Practice Inventory. Explanatory variables included demographic characteristics, Center for Epidemiologic Studies-Depression Scale, Big Five Inventory, and Caregiver Reaction Assessment. Participants included 98 women and 52 men. Age range was 18-84 years (M = 52.3 years). The highest frequency of barriers for both genders related to misconceptions about meditation. The total number of barriers to meditation did not significantly vary by gender (p = .10) nor age (p = .27). After adjusting for personality trait, reactions to caregiving, and emotional distress, gender (adjusted β = 0.81, SE = 1.70, p = .63) and age (adjusted β = 0.02, SE = 0.05, p = .67) still did not predict the number of barriers to meditation. Backward elimination in model building showed that personality trait and reactions to caregiving account for 32% of the variability in barriers. The total number of barriers to meditation was examined, and a difference was not found by age or gender. It is possible that differences by age and gender exist at the item level of evaluation but were not evident when evaluating total scores. Further study is needed with samples large enough to have statistical power for item-level analysis.

Predictors of caregiving satisfaction in informal caregivers of people with dementia

DEFF Research Database (Denmark)

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

2015-01-01

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

Reiki training for caregivers of hospitalized pediatric patients: A pilot program☆

Science.gov (United States)

Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A.; Towle, Cara B.; Doorenbos, Ardith Z.

2013-01-01

To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant’s feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child’s care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. PMID:23337565

From serving in the military to serving loved ones: unique experiences of older veteran caregivers.

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Monin, Joan K; Levy, Becca R; Pietrzak, Robert H

2014-06-01

We examined whether older caregiving veterans differ from noncaregiving veterans in terms of health and psychosocial factors and how these factors and caregiving aspects (i.e., hours, relationship type) relate to caregiving strain and reward. We also evaluated two hypotheses: (1) combat exposure provides protection from emotional caregiving strain, and (2) grandparenting is particularly rewarding. We used a cross-sectional web survey of a nationally representative sample of older veterans in the United States. Data were drawn from the National Health and Resilience in Veterans Study, and participants were 2,025 U.S. veterans aged 60 or older (mean: 71.0; SD: 7.1; range: 60-96). Participants completed measures of caregiving status, sociodemographic characteristics, combat exposure, physical and mental health, cognitive status, and psychosocial characteristics. Caregivers reported caregiving hours, caregiving type, emotional and physical strain, and reward. A total of 20.4% of U.S. older veterans are caregivers. As predicted, among the veteran caregivers, (1) combat exposure was associated with less emotional caregiving strain (odds ratio [OR]: 0.57), and (2) grandparenting was associated with increased perception of caregiving reward (OR: 5.28). Resilience was negatively associated with physical strain, whereas depressive symptoms were associated with greater emotional strain; gratitude, happiness, and social support were additionally associated with greater reward. Caregivers were more likely to be married and highly educated than noncaregivers but did not differ with respect to health or psychosocial characteristics. One in five older U.S. veterans is a caregiver. Older veterans' combat exposure may decrease the emotional demands of caregiving, and grandparenting is perceived as particularly rewarding. Results suggest that older veterans are an important caregiving resource that deserves tailored resources. Copyright © 2014 American Association for Geriatric

Effect of the functional caregivers Plan implementation on the anxiety and quality of life for the family caregivers of dependent people with neurological disorders

Directory of Open Access Journals (Sweden)

Ruth Molina Fuillerat

2012-01-01

Full Text Available In January 2005 the Andalusian Health Service Improvement Plan prepared: Caring for the Caregiver include actions to be taken to promote equity, to recognize and facilitate the work of family carers. From our perspective of formal caregivers, it seems necessary to consider not only themselves need care patients with the disease, but also makes it mandatory caring individuals usually relatives, facilitators of the provision of care. In the Unit of Neurology, the daily observation of these family situations, has guided and network relationship between the two formal and informal systems of care, and we have tried the approach of the caregivers as clients to treat them as co-participants the experience of caring. Hypothesis: The Implementation of Functional Plan caregiver positive impact on hospitalization decreased anxiety and improved quality of life of caregivers of a dependent patient. Overall objective: To determine the effect of applying functional caregiver Plan on anxiety and quality of life of family caregivers of dependent people with neurological disorders. Study Design: Experimental study of the clinical trial such an intervention group and a control group randomly assigned.

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

Directory of Open Access Journals (Sweden)

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.

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

Science.gov (United States)

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

2017-01-01

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

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

Science.gov (United States)

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

2017-12-01

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

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

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

2015-12-01

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

2018-04-01

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

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

Science.gov (United States)

Basnyat, Iccha; Chang, Leanne

2017-09-01

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

Understanding How to Support Family Caregivers of Seniors with Complex Needs

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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

Tetraspanin CD9 participates in dysmegakaryopoiesis and stromal interactions in primary myelofibrosis.

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Desterke, Christophe; Martinaud, Christophe; Guerton, Bernadette; Pieri, Lisa; Bogani, Costanza; Clay, Denis; Torossian, Frederic; Lataillade, Jean-Jacques; Hasselbach, Hans C; Gisslinger, Heinz; Demory, Jean-Loup; Dupriez, Brigitte; Boucheix, Claude; Rubinstein, Eric; Amsellem, Sophie; Vannucchi, Alessandro M; Le Bousse-Kerdilès, Marie-Caroline

2015-06-01

Primary myelofibrosis is characterized by clonal myeloproliferation, dysmegakaryopoiesis, extramedullary hematopoiesis associated with myelofibrosis and altered stroma in the bone marrow and spleen. The expression of CD9, a tetraspanin known to participate in megakaryopoiesis, platelet formation, cell migration and interaction with stroma, is deregulated in patients with primary myelofibrosis and is correlated with stage of myelofibrosis. We investigated whether CD9 participates in the dysmegakaryopoiesis observed in patients and whether it is involved in the altered interplay between megakaryocytes and stromal cells. We found that CD9 expression was modulated during megakaryocyte differentiation in primary myelofibrosis and that cell surface CD9 engagement by antibody ligation improved the dysmegakaryopoiesis by restoring the balance of MAPK and PI3K signaling. When co-cultured on bone marrow mesenchymal stromal cells from patients, megakaryocytes from patients with primary myelofibrosis displayed modified behaviors in terms of adhesion, cell survival and proliferation as compared to megakaryocytes from healthy donors. These modifications were reversed after antibody ligation of cell surface CD9, suggesting the participation of CD9 in the abnormal interplay between primary myelofibrosis megakaryocytes and stroma. Furthermore, silencing of CD9 reduced CXCL12 and CXCR4 expression in primary myelofibrosis megakaryocytes as well as their CXCL12-dependent migration. Collectively, our results indicate that CD9 plays a role in the dysmegakaryopoiesis that occurs in primary myelofibrosis and affects interactions between megakaryocytes and bone marrow stromal cells. These results strengthen the "bad seed in bad soil" hypothesis that we have previously proposed, in which alterations of reciprocal interactions between hematopoietic and stromal cells participate in the pathogenesis of primary myelofibrosis. Copyright© Ferrata Storti Foundation.

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

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Li, Lydia W.; McLaughlin, Sara J.

2012-01-01

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

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

Science.gov (United States)

Teri, Linda; Truax, Paula

1994-01-01

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

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

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

2017-02-01

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

The Mediating Role of Sleep Quality on Well-Being Among Japanese Working Family Caregivers

OpenAIRE

Honda, Ayumi; Iwasaki, Yoshie; Honda, Sumihisa

2017-01-01

The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was ...

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

Science.gov (United States)

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

2016-09-23

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

[Resilience in caregivers of patients with dementia: A preliminary study].

Science.gov (United States)

Fernández-Lansac, Violeta; Crespo López, María; Cáceres, Rebeca; Rodríguez-Poyo, María

2012-01-01

Caring for a relative with dementia often has negative effects on the caregiver's physical and psychological health. However, many caregivers successfully cope with the stress factors arising from care, and even have uplifts during their experience, showing high resilience levels. This study presents a preliminary analysis of resilience in caregivers of patients with dementia, exploring its relationship with different variables. Resilience was assessed (by CD-RISC) in 53 family caregivers of patients with dementia. Resilience was correlated to the following variables: caregiving context, stressors (e.g., cognitive impairment), appraisals (e.g., burden), moderators (e.g., personality traits and resources), and caregiving consequences (physical and psychological health). The participants showed moderate scores on resilience. Resilience was associated with poor emotional and physical status (significant inverse correlations with anxiety, depression, psycho-active drug use, health habits…). High resilience scores were significantly correlated to burden, neuroticism and extraversion, self-efficacy, self-esteem and less use of emotion focused coping strategies. Higher resilience relates to a good emotional and physical status in caregivers. Moreover, resilience is more associated with caregiver variables (e.g., appraisal and coping with care, personality features), than to situational variables. The data highlight the strengthening of these types of appraisal and coping as a way to improve caregivers' resilience and, consequently, their health. Copyright © 2011 SEGG. Published by Elsevier Espana. All rights reserved.

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

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

2014-01-01

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

What do long-distance caregivers do? : judgment of propositions and the epistemics of long-distance family relationships

OpenAIRE

中川, 敦; Atsushi, NAKAGAWA

2015-01-01

This study clarifies what long-distance caregivers do. To this end, I conducted a conversation analysis of video data of a care conference in which a long-distance caregiver participated. When a professional caregiver proposes a care plan to a long-distance caregiver, he/she substitutes technical terms with laymen terms for easy understanding, indicating his/her orientation that a long-distance caregiver is not a professional. However, if the caregiver laughs or averts his/her eyes during the...

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

Directory of Open Access Journals (Sweden)

Rishma Gohil

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

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

NARCIS (Netherlands)

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

2015-01-01

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

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

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

Commitment to personal values and guilt feelings in dementia caregivers.

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Gallego-Alberto, Laura; Losada, Andrés; Márquez-González, María; Romero-Moreno, Rosa; Vara, Carlos

2017-01-01

Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

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

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

2016-01-01

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

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.

Caregivers' hair cortisol: a possible biomarker of chronic stress is associated with obesity measures among children with disabilities.

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Chen, Xiaoli; Gelaye, Bizu; Velez, Juan Carlos; Barbosa, Clarita; Pepper, Micah; Andrade, Asterio; Gao, Wei; Kirschbaum, Clemens; Williams, Michelle A

2015-02-15

The stress of caring for a loved one with chronic illness has been associated with childhood obesity. Hair cortisol has been proposed as a novel biomarker of chronic psychological stress. This study aimed to evaluate the associations between caregivers' chronic stress evaluated by hair cortisol concentrations (HCC) and obesity measures among children with disabilities such as autism. Eighty-five dyads of children with disabilities and their primary caregivers participated in the study between April and July 2013 in the Patagonia Region, Chile. Trained research staff conducted anthropometric measurements of children and caregivers. Cortisol concentrations, extracted from hair samples with methanol, were quantified using liquid chromatography tandem mass spectrometry. Pearson's correlation coefficients and linear regression models were used to examine the associations between caregiver HCC (log-transformed) and child obesity measures with adjustment for covariates. Caregiver HCC were positively and significantly correlated with child weight (child age- and sex-adjusted r =0.23, P = 0.036), body mass index (BMI) (r = 0.23, P = 0.035), circumferences of neck (r = 0.30, P = 0.006), waist (r = 0.27, P = 0.014), and hip (r = 0.22, P = 0.044). After adjustment for children's age and sex, caregiver HCC were significantly related to child weight (kg) (beta = 4.47, standard error (SE) = 2.09), BMI (kg/m(2)) (beta = 1.52, SE = 0.71), neck circumference (cm) (beta = 1.20, SE = 0.43), waist circumference (cm) (beta = 3.75, SE = 1.50), and hip circumference (cm) (beta = 3.02, SE = 1.48). Caregiver HCC were also positively but not statistically significantly associated with child waist-to-hip ratio (beta = 0.01, SE = 0.01; P = 0.191) or body fat percentage (%) (beta = 2.11, SE = 1.28; P = 0.104). Further adjustment for other covariates including child disability diagnosis and caregiver age, sex, education, current smoking, perceived stress, and caregiver BMI did not change the

Bullying at school: Agreement between caregivers' and children's perception.

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Durán, Lucas G; Scherñuk Schroh, Jordán C; Panizoni, Estefanía P; Jouglard, Ezequiel F; Serralunga, M Gabriela; Esandi, M Eugenia

2017-02-01

Bullying at school is usually kept secret from adults, making them unaware of the situation. To describe caregivers' and children's perception and assess their agreement in terms of bullying situations. Cross-sectional study in children aged 8-12 years old attending public schools and their caregivers. The questionnaire on preconceptions of intimidation and bullying among peers (PRECONCIMEI) (child/caregiver version) was used. Studied outcome measures: Scale of bullying, causes of bullying, child involvement in bullying, communication in bullying situations. Univariate and bivariate analyses were done and agreement was estimated using the Kappa index. A total of 529 child/caregiver dyads participated. Among caregivers, 35% stated that bullying occurred in their children's schools. Among children, 133 (25%) admitted to being involved: 70 (13%) were victims of bullying, 40 (8%) were bullies, and 23 (4%) were bullied and perpetrated bullying. Among the 63 caregivers of children who admitted to be bullies, 78% did not consider their children capable of perpetrating bullying. Among children who were bullied or who both suffered bullying and bullied others, 69.9% (65/93) indicated that "if they were the victims of bullying, they would tell their family." However, 89.2% (83/93) of caregivers considered that their children would tell them if they were ever involved in these situations. Agreement was observed in terms of a positive communication (Kappa = -0.04) between 62.6% (57/91) of the child/caregiver dyads school bullying. Disagreement was observed between children and their caregivers in relation to the frequency and communication of bullying situations. Few caregivers whose children admitted to being involved in these situations believed it was a possibility. Sociedad Argentina de Pediatría

Experiences and challenges of informal caregiving for Korean immigrants

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Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T.; Lee, Jong Eun; Kim, Kim B.

2010-01-01

Aim This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Background Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers’ unique caregiving experiences from their perspectives. Method A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½-2 hours. Thematic analysis was conducted by two bilingual researchers. Findings Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. Conclusion The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population. PMID:18727754

Help for the Caregiver

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

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

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

2009-06-01

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

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

African Journals Online (AJOL)

lmboera

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

Caregiver perceptions of children's linear growth in Bangladesh: a qualitative analysis.

Science.gov (United States)

Hossain, Muttaquina; Ickes, Scott; Rice, Lauren; Ritter, Gaelen; Naila, Nurun Nahar; Zia, Tasnia; Nahar, Baitun; Mahfuz, Mustafa; Denno, Donna M; Ahmed, Tahmeed; Walson, Judd

2018-03-26

To understand caregivers' perceptions of children's linear growth and to identify the cultural meanings and perceptions of risk associated with poor height attainment. Three investigators from Bangladesh conducted twelve focus group discussions. The study was conducted in rural and slum settings in Bangladesh. Participants included mothers and alternative caregivers (n 81) who were recruited by household screening. No eligible, recruited subjects refused participation. Caregivers reported limited experience with growth monitoring services from the health system. Caregivers mainly use visual cues and developmental milestones to understand if children are growing properly, and recognize that children normally experience both weight gain and linear growth with age. Mothers expressed concern over children's malnutrition and short stature, but did not discuss children's failure to attain a 'growth potential' or distinguish inherited short stature from stunting. Caregivers interpret the consequences of poor height attainment as primarily social and economic and cite few health risks. Linear growth interpretation is determined more by community norms than by guidance from nutrition programming or the health system. Interventions to prevent or reduce linear growth failure may be perceived to have limited value where appropriate linear growth in children is determined by comparison to peers and siblings. Such perceptions may be significant barriers to programmes addressing stunting prevention in settings where many children are stunted. Efforts to raise awareness about the risks of linear growth faltering may need to consider delivering messages to caregivers that emphasize the social and economic consequences of stunting.

The Northern Manhattan Caregiver Intervention Project: a randomised trial testing the effectiveness of a dementia caregiver intervention in Hispanics in New York City.

Science.gov (United States)

Luchsinger, José; Mittelman, Mary; Mejia, Miriam; Silver, Stephanie; Lucero, Robert J; Ramirez, Mildred; Kong, Jian; Teresi, Jeanne A

2012-01-01

Dementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing depression and stress in selected populations of caregivers. Hispanics in New York City tend to have a higher burden of dementia caregiving compared to non-Hispanic whites (NHW) because Hispanics have a higher prevalence of dementia, tend to have high family involvement, and tend to have higher psychosocial and economic stressors. Thus, we chose to test the effectiveness of a dementia caregiving intervention, the New York University Caregiver Intervention (NYUCI), with demonstrated efficacy in spouse caregivers in Hispanic relative caregivers of persons with dementia. Including the community health worker (CHW) intervention in both arms alleviates general psychosocial stressors and allows the assessment of the effectiveness of the intervention. Compared to two original efficacy studies of the NYUCI, which included only spouse caregivers, our study includes all relative caregivers, including common law spouses, children, siblings, a nephew and nieces. This study will be the first randomised trial to test the effectiveness of the NYUCI in Hispanic caregivers including non-spouses. The design of the study is a randomised controlled trial (RCT). Participants are randomised to two arms: case management by a CHW and an intervention arm including the NYUCI in addition to case management by the CHW. The duration of intervention is 6 months. The main outcomes in the trial are changes in the Geriatric Depression Scale (GDS) and the Zarit Caregiver Burden Scale (ZCBS) from baseline to 6 months. This trial is approved by the Columbia University Medical Center Institutional Review Board (AAAI0022), and funded by the National Institute on Minority Health and Health Disparities. The funding agency has no role in dissemination.  www.ClinicalTrials.gov NCT01306695.

Management and Encouragement of Pupil Participation in Primary Education: A Qualitative Case Study

Directory of Open Access Journals (Sweden)

Daniel García-Pérez

2014-06-01

Full Text Available Our work focuses on the participation of students of primary education in decision-making. We carried out a qualitative case study of two public Primary schools with the aim of illustrating good models of student participation. On the one hand, our results highlight the opportunities resulting from the creation of specific structures of student participation, such as class and student councils, because they allow students to participate in collective rule-making, conflict management and the planning and evaluation of school and class activities. On the other hand, the results emphasize the contributions derived from the use of teaching methods that enhance student participation in decision making on academic issues by selecting contents, the inclusion of self-assessment processes and the self-organization of work time. Overall, the results obtained point out that it is feasible to organize the activity of a Primary Education center encouraging students to participate in decision making and they add evidence supported in the practice of two schools to progress in the study and promotion of school participation.

Attachment and caregiving relationships in families affected by parental incarceration

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Shlafer, Rebecca J.; Poehlmann, Julie

2011-01-01

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

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.

Stress and social support in caregivers of children with cerebral palsy

Directory of Open Access Journals (Sweden)

Alyne Kalyane Câmara de Oliveira

2013-12-01

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

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

DEFF Research Database (Denmark)

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

2016-01-01

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

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

Science.gov (United States)

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

2017-09-01

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

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

Science.gov (United States)

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-10-01

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

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

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

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

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

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

2013-06-01

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

Factors associated with resident aggression toward caregivers in nursing homes.

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Zeller, Adelheid; Dassen, Theo; Kok, Gerjo; Needham, Ian; Halfens, Ruud J G

2012-09-01

Caregivers in nursing homes often experience aggressive behavior of residents. The aim of this study was to explore the caregivers' experiences with aggressive behavior from residents and to identify environmental factors as well as caregiver and resident characteristics related to aggressive behavior in Swiss nursing homes. A retrospective cross-sectional survey was conducted between November 2010 and April 2011 with a sample of caregivers working in various nursing homes in the German-speaking part of Switzerland. In total, 814 caregivers (response rate 51.8%) of 21 nursing homes participated in the study. Data were collected using the German version of the Survey of Violence Experienced by Staff (SOVES-G-R). Standard descriptive statistics were used to describe and summarize the date. To identify risk factors related to the experience of aggression by residents, multilevel logistic regression analysis was applied. The prevalence of participants reporting an aggressive incident during the 12-month period prior to data collection was 81.6%. Of these, 76.5% had experienced verbal aggression, 27.6% threats, and 54.0% physical aggression. The predictive variables in the multiple regression model for physical aggression were: staff education level (odds ratio [OR]= 1.82), gender (OR = 1.82), age ( 45 years: OR = 2.13), and confidence in managing physical aggression (OR = 1.49). The predictive variables for threatening behavior were staff education level (registered nurses vs. non-registered nurses: OR = 1.70; nonstudent vs. student: OR = 1.89) and age ( 45 years: OR = 2.04). Caregivers in nursing homes are at high risk for experiencing aggressive behavior. The identified risk factors are in line with earlier investigations, but some contradictory results also were observed. The high risk for registered nurses exposed to aggressive behavior and the increased risk for caregivers who feel confident in managing aggressive behavior cast a critical light on the content and

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

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

2013-01-01

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

[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.

Compliance and Caregiver Satisfaction in Alzheimer’s Disease: Results from the AXEPT Study

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Roberto Bernabei

2012-10-01

Full Text Available Background/Aims: According to experimental data, a transdermal application is preferred by caregivers of Alzheimer’s disease (AD patients compared with oral medications. The AXEPT study compared compliance to treatment among community-dwelling patients with mild-to-moderate AD treated with transdermal application compared to oral medications and caregiver satisfaction in a real clinical setting. Methods: Data from 45 memory clinics in Italy were collected between September 8, 2010 and January 31, 2011. Compliance to treatment and caregiver satisfaction were measured using the Caregiver Medication Interview. Results: A total of 855 AD patients and their caregivers participated in the study. Nearly 80% of caregivers of patients on patch were not concerned about adherence to treatment compared with 64% of caregivers of patients on oral drugs. Among caregivers of patients on patch, 94% did not report any difficulties in remembering to administer treatment compared with 73% of caregivers of patients on oral medications. The highest level of compliance and satisfaction was reported by caregivers of patients on transdermal application. Conclusion: Caregivers of patients treated with a transdermal application appeared to be more satisfied and reported a higher level of compliance than caregivers of patients receiving anti-AD oral medications.

Korean sibling caregivers of individuals diagnosed with schizophrenia

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Mijung Park

2017-12-01

Full Text Available Siblings of individuals diagnosed with schizophrenia are an important source of family caregiving. Unfortunately, limited information is available about sibling caregivers because existing studies have focused on other family relationships such as parents, spouses, and children. To fill the knowledge gap, the purpose of this study is to describe Korean sibling caregivers’ experience with individuals diagnosed with schizophrenia. Guided by Colaizzi’s descriptive phenomenological methodology, we conducted in-depth, semi-structured, face-to-face interviews with eight individuals who have a sibling (1 diagnosed with schizophrenia and (2 hospitalized in an inpatient psychiatric unit. We discerned six key themes: sorrow, burnout, shame, different perspectives in life, acceptance, and responsibility. We categorized these themes into three groups: suffering, hope, and responsibility and obligation. Sibling caregivers of individuals with schizophrenia experience a mixture of several emotions. Participants loved their brother or sister with schizophrenia, but at the same time they felt shame and fear. While they were burdened by the responsibilities of caregiving, they remained loyal to their sibling with schizophrenia, continuing to help their siblings reach their full potential. Although participants were confused about the symptoms of schizophrenia, they were committed to learning more about the illness. Because we conducted the current study in Korea, the findings of this study may be unique to Korea culture. Further studies are needed to compare and contrast nuanced differences in sibling caregivers’ experience among different cultural groups.

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

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Antonio G. Lentoor

2017-06-01

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

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

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Beach, Scott R; Schulz, Richard

2017-03-01

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

Cultural significance of primary teeth for caregivers in Northeast Brazil O significado cultural dos dentes decíduos para cuidadoras no Nordeste do Brasil

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Marilyn K Nations

2008-04-01

Full Text Available This anthropological study critically evaluates Brazilian caregivers' symbolic production and significance of their malnourished offspring's primary teeth, as well as their own, and describes popular dental practices. From January to June 2004, ethnographic interviews of 27 poor, low-literacy mothers were conducted at a public Malnutrition Treatment Center in Fortaleza, Ceará State. Participant observation of clinical pathways and home environments supplemented the data. Content analysis was performed. Results confirm that primary teeth are imbued with cultural significance in Northeast Brazil. Mothers examine mouths, perceive signs of decay, associate primary with permanent tooth healthiness, identify ethnodental illnesses, seek assistance, and perform rituals with exfoliated teeth. The mother's motivation to care for primary teeth is sparked by her memories of past toothache and attempts to avoid stigma and discrimination. Social determinants, not mothers' beliefs or behaviors, are the most critical obstacles to effective dental care. Legitimizing lay knowledge and empowering caregivers and children can improve oral health in Northeast Brazil.Este estudo antropológico analisa a produção simbólica de cuidadoras brasileiras sobre a sua dentição e a de seus filhos desnutridos, descrevendo práticas populares de cuidados em saúde bucal. De janeiro a junho de 2004, foram conduzidas entrevistas etnográficas com 27 cuidadoras, numa instituição pública, no tratamento de desnutrição em Fortaleza, Ceará. A observação participante da dinâmica de atendimento e do ambiente domiciliar suplementaram os dados. Foi utilizada a análise temática. Os resultados confirmam que os dentes decíduos são imbuídos de significados culturais no nordeste brasileiro. As mães examinam as bocas dos filhos, percebem sinais de cárie, associam dentes decíduos saudáveis com permanentes hígidos, identificam enfermidades etnodentárias, procuram assist

A Research Study on Secure Attachment Using the Primary Caregiving Approach

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

2015-01-01

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

Late-Stage Caregiving

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

Middle-State Caregiving

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

Early-Stage Caregiving