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Family Caregivers (family + caregiver)
Kinds of Family Caregivers Terms modified by Family Caregivers Selected AbstractsConceptions of Dementia in a Multiethnic Sample of Family CaregiversJOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 8 2005Ladson Hinton MD Understanding variability in conceptions of dementia in multiethnic populations is important to improve care and guide research. The objectives of this study were to describe caregiver conceptions of dementia using a previously developed typology and to examine the correlates of conceptions of dementia in a multiethnic sample. This is a cross-sectional study conducted in Boston and the San Francisco Bay area. Participants were a convenience sample of 92 family dementia caregivers from four ethnic/racial groups: African-American, Anglo European-American, Asian-American, and Latino. In-depth, qualitative interviews explored the caregivers' ideas about the nature and cause of dementia (i.e., explanatory models). Explanatory models of caregivers were categorized as biomedical, folk, or mixed (folk/biomedical). Quantitative analyses examined the association between ethnicity and other caregiver characteristics, and explanatory model type. Overall, 54% of caregivers, including 41% of Anglo European Americans, held explanatory models that combined folk and biomedical elements (i.e., mixed models). For example, many families attributed Alzheimer's disease and related dementias to psychosocial stress or normal aging. Ethnicity, lower education, and sex were associated with explanatory model type in bivariate analyses. In multiple logistic regression analysis, minority caregivers (P<.02) and those with less formal education (P<.02) were more likely to hold mixed or folk models of dementia. Although minority and nonminority caregivers often incorporated folk models into their understanding of dementia, this was more common in minority caregivers and those with less formal education. Further research on cross-ethnic differences in a larger, more-representative sample is needed. [source] The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in TaiwanJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 3 2007Yueh-Ching Chou Background, Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods, A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results, The mean score for ,physical' was highest and that for ,environment' was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions, The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes. [source] Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in ThailandHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 1 2010R. Oupra RN MSc MNS PhD Abstract In Thailand, the crude death rate from stroke is 10.9/100 000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life. [source] Caregiver preference for rivastigmine patch relative to capsules for treatment of probable Alzheimer's diseaseINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 5 2007Bengt Winblad Abstract Background Family caregivers comprise a critical component in the care of Alzheimer's disease (AD) patients. Among their many tasks, caregivers are responsible for administering and managing medications. Effective interventions incorporate the needs of both the AD patient and the caregiver, and understanding treatment preferences may maximize intervention effectiveness. Transdermal patches may offer advantages over conventional oral formulations. Methods A 24-week randomized controlled trial compared the rivastigmine patch to the rivastigmine capsule and placebo in patients with probable AD. At baseline and Weeks 8 and 24, the AD Caregiver Preference Questionnaire (ADCPQ) was used to evaluate caregiver expectations, preferences and satisfaction with treatment. Double-dummy treatment blinding ensured that caregiver preference for the patch or capsule was not confounded by perceptions of efficacy or tolerability. Reasons for preference were also elicited. The analytic sample included caregivers who completed the ADCPQ at Weeks 8 and/or 24. Results One thousand and fifty-nine caregivers completed the ADCPQ. More than 70% of caregivers preferred the rivastigmine patch to the capsule. The patch was significantly preferred to the capsule with respect to ease of following the schedule and ease of use. Caregivers indicated greater satisfaction overall, greater satisfaction with administration, and less interference with daily life with the patch versus the capsule (all p,,,0.01). Conclusion Caregivers of AD patients preferred the patch to the capsule for drug delivery. Preference for the rivastigmine patch could potentially lead to improved compliance and improved clinical benefits. Copyright © 2007 John Wiley & Sons, Ltd. [source] Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in ThailandHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 1 2010R. Oupra RN MSc MNS PhD Abstract In Thailand, the crude death rate from stroke is 10.9/100 000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life. [source] Gender, kinship and caregiver burden: the case of community-dwelling memory impaired seniorsINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 8 2003Neale R. Chumbler Abstract Background This study examined whether there were gender and kinship (spouse, child, more distant relative) differences in caregiver burden. It further examined the constellation of gender and kinship by examining whether adult daughter caregivers experienced greater burden compared to wives, husbands, sons, and other more distant relatives. Methods The sample consisted of 305 family caregivers of memory-impaired individuals who were age 70 years or older and resided in non-institutional settings in Arkansas. A cross-sectional design was employed using validated measures to assess both the memory-impaired elders' and family caregivers' self-reported physical and memory status. Results After controlling for the age and health status characteristics of the memory-impaired elder, sociodemographic and health status characteristics of the family caregiver, and the caregiver coping response (measured by the sense of coherence), multiple regression analyses found kinship, but not gender differences in caregiver burden. Adult children experienced more caregiver burden than more distant relatives. There were no significant differences in caregiver burden between adult children and spouses. Adult daughters had greater caregiver burden scores compared to more distant relatives, but had comparable scores to wives, sons, and husbands. Other significant correlates of burden included caregiver personal characteristics (age and ethnicity) and the sense of coherence. Conclusions The study discusses the practice implications of adult children and adult daughters' propensity to suffer burden when caring for their memory-impaired parents living in the community. It also discusses the relevance of caregiver personal characteristics and the sense of coherence as correlates of burden. Copyright © 2003 John Wiley & Sons, Ltd. [source] Hospital discharge planning for frail older people and their family.JOURNAL OF CLINICAL NURSING, Issue 18 2009Are we delivering best practice? Aims and objectives., This paper examined the available evidence concerning hospital discharge practices for frail older people and their family caregivers and what practices were most beneficial for this group. Background., Hospital discharge practices are placing an increasing burden of care on the family caregiver. Discharge planning and execution is significant for older patients where inadequate practices can be linked to adverse outcomes and an increased risk of readmission. Design., Literature review. Methods., A review of English language literature published after 1995 on hospital discharge of frail older people and family carer's experiences. Results., Numerous factors impact on the hospital discharge planning of the frail older person and their family carer's that when categorised focus on the role that discharge planning plays in bridging the gap between the care provided in hospital and the care needed in the community, its potential to reduce the length of hospital stay, the impact of the discharge process on family carer's and the need for a coordinated health professional approach that includes dissemination of information, clear communication and active support. Conclusion., The current evidence indicates that hospital discharge planning for frail older people can be improved if interventions address family inclusion and education, communication between health care workers and family, interdisciplinary communication and ongoing support after discharge. Interventions should commence well before discharge. Relevance to clinical practice., An awareness of how the execution of the hospital discharge plan is perceived by the principal family carer of a frail older person, will allow nurses and others involved with the discharge process to better reconcile the family caregivers' needs and expectations with the discharge process offered by their facility. The research shows there is a direct correlation between the quality of discharge planning and readmission to hospital. [source] Hospitalized elders and family caregivers: a typology of family worryJOURNAL OF CLINICAL NURSING, Issue 1 2005Hong Li PhD Objective., This qualitative study explored the kinds of worry that family caregivers experience when their older relatives are hospitalized. Background., 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. Design., A qualitative descriptive design with Loftland and Loftland (1984) approach for the study of a phenomenon occurring in a social setting was used. Method., 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. Results., 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. Conclusions., The findings of this pilot study provide nurses with the initial knowledge of the typology of family worry associated with elderly relatives' hospitalizations. Relevance to clinical practice., 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. [source] Providing inbuilt economic resilience options,,CANCER, Issue S12 2008An obligation of comprehensive cancer care Abstract For many, a cancer death in the family is the immediately obvious part of what is actually a double devastation. Overwhelming financial damage also results for many families, from the cost of medical care and from the loss of earning power by the patient and family. For some families, the consequences may be multigenerational and can affect the health of the survivors. Although this situation is not limited to cancer, the authors argue that oncology can take a lead in attending to these consequences of cancer as an integral part of its commitment to comprehensive cancer care. They make this case for both the national and the international settings. They also articulate and illustrate the notion of inbuilt options for economic resilience (IERs), which the authors suggest the medical industry, and its cancer care sectors in particular, should be providing to all patients and their families if they are at risk for damaging financial losses. After describing key features to IER, the authors illustrate it with 1 type of approach for households of the terminally ill: hospice care with provision of supplementary training and certification to the family caregiver. Such programming could generate a low-technology, semiskilled healthcare service economy as trained family caregivers provide support to other households in need, thereby both providing a recovery option for themselves and reduced economic devastation to the households which, by receiving the services, can stay in the workforce. Finally, the authors call for invigorated research on the economic impact of cancer on families and for the modeling, demonstration, and study of options for economic resilience, including IER programs. Cancer 2008;113(12 suppl):3548,55. © 2008 American Cancer Society. [source] Cultural Variability in the Manifestation of Expressed EmotionFAMILY PROCESS, Issue 2 2009STEVEN R. LÓPEZ PH.D. We examined the distribution of expressed emotion (EE) and its indices in a sample of 224 family caregivers of individuals with schizophrenia pooled from 5 studies, 3 reflecting a contemporary sample of Mexican Americans (MA 2000, N=126), 1 of an earlier study of Mexican Americans (MA 1980, N=44), and the other of an earlier study of Anglo Americans (AA, N=54). Chi-square and path analyses revealed no significant differences between the 2 MA samples in rates of high EE, critical comments, hostility, and emotional over-involvement (EOI). Only caregiver warmth differed for the 2 MA samples; MA 1980 had higher warmth than MA 2000. Significant differences were consistently found between the combined MA samples and the AA sample; AAs had higher rates of high EE, more critical comments, less warmth, less EOI, and a high EE profile comprised more of criticism/hostility. We also examined the relationship of proxy measures of acculturation among the MA 2000 sample. The findings support and extend Jenkins' earlier observations regarding the cultural variability of EE for Mexican Americans. Implications are discussed regarding the cross-cultural measurement of EE and the focus of family interventions. RESUMEN Examinamos la distribución de emoción expresada y sus índices en una muestra de 224 cuidadores parientes de personas con esquizofrenia tomadas de 5 estudios, tres que reflejaban una muestra contemporánea de personas méxico-estadounidenses (ME 2000, N=126), una de un estudio anterior de méxico-estadounidenses (ME 1980, N=44, Karno et al., 1987) y la otra de un estudio anterior de angloamericanos (AA, N=54, Vaughn et al., 1984). La distribución ji-cuadrado y los análisis de pautas no revelaron diferencias significativas entre las dos muestras de méxico-estadounidenses en cuanto a los índices de alta emoción expresada, comentarios críticos, hostilidad y sobreimplicación emocional. Solo la calidez de los cuidadores fue distinta en las dos muestras de méxico-estadounidenses; el grupo ME 1980 demostró mayor calidez que el grupo ME 2000. Se encontraron sistemáticamente diferencias considerables entre las dos muestras de méxico-estadounidenses y la muestra de angloamericanos; los angloamericanos demostraron índices más altos de alta emoción expresada, más comentarios críticos, menos calidez, menos sobreimplicación emocional y un perfil de alta emoción expresada compuesto mayormente por crítica y hostilidad. También examinamos la relación de los cálculos aproximados de aculturación entre la muestra ME 2000. Los resultados respaldan y amplían las observaciones anteriores de Jenkins (1991) con respecto a la variabilidad cultural de emoción expresada en los méxico-estadounidenses. Se comentan las implicaciones con respecto a la evaluación intercultural de emoción expresada y al enfoque de las intervenciones familiares. Palabras clave: Emoción expresada, cultura, méxico-estadounidenses, sobreimplicación emocional, esquizofrenia, cuidadores parientes [source] Family Caregivers' Patterns of Positive and Negative Affect,FAMILY RELATIONS, Issue 1 2007Suzanne M. Robertson Abstract: Stressful and positive family caregiving experiences were examined as predictors of caregivers' patterns of positive and negative affect in a sample of families providing care for a relative with dementia (N= 234). Four affect pattern groups were identified: (a) Well Adjusted (i.e., high positive affect, low negative affect); (b) Ambiguous (i.e., low on both positive and negative affect); (c) Intense (i.e., high on both positive and negative affect); and (d) Distressed (i.e., high negative affect, low positive affect). A multivariate model that included demographic characteristics and indicators of stressful and positive experiences of caregiving yielded 2 significant discriminant functions that served to classify caregivers correctly into their known affect groups. Implications for improving intervention efforts targeting family caregivers are discussed. [source] Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in ThailandHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 1 2010R. Oupra RN MSc MNS PhD Abstract In Thailand, the crude death rate from stroke is 10.9/100 000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life. [source] Non-supportive interactions in the experience of women family caregiversHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 6 2007Anne Neufeld RN PhD Abstract The purpose of this ethnographic study was to identify and describe types of non-supportive interactions perceived by 59 women family caregivers in four diverse situations. Participants included 15 mothers of infants born prematurely, 14 mothers of a child with a chronic disease (asthma or diabetes), and women caring for an adult family member with either cancer (15) or dementia (15). Data collection methods included an initial in-depth interview with all women, followed by a second interview with a smaller group of caregivers including a card sort exercise that was based on thematic content analysis of the first interview data. A typology of non-supportive interactions was developed from analysis of the first two interviews and confirmed in a final interview with a subset of study participants. Interviews were audio-taped and transcribed verbatim. Women in all caregiving situations described experience with three types of non-supportive interactions. These interactions were negative, ineffective, or lacking expected support. The women's appraisal of interactions as supportive or non-supportive was rooted in their personal expectations and the context of their situation. Information about types of non-supportive interactions can sensitise professionals, family and friends to mismatches between their assistance and caregivers' requirements, potentially avoiding negative consequences. [source] Exploratory analysis of Chinese-American family caregivers' needs and instructional video on dressing stroke survivorsINTERNATIONAL JOURNAL OF CONSUMER STUDIES, Issue 5 2010Shu-Hwa LinArticle first published online: 18 AUG 2010 Abstract The aims of this project were to explore the needs of family caregivers in the Chinese-American community and to develop training videos for caregivers on dressing stroke survivors. In-depth, semi-structured, open-ended interviews were used to explore the problems of caregivers of stroke survivors. Forty participants were recruited from Chinese-American communities. Verbatim interview transcripts were coded and analyzed. Four main concerns emerged: the impact and adjustment in lifestyle for family caregivers; lack of social activities and failure to seek community support; physical and mental stress and methods to alleviate stress, such as instruction in heavy lifting and guidance for daily activities, which include dressing. An 18-min video was produced to provide instruction on dressing stroke survivors for those who need this information. Also, this article addresses the lack of social activities and information about community or public services. [source] Support/services among family caregivers of persons with dementia,perceived importance and services receivedINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 3 2010Jenny Alwin Abstract Objective The aim of this study was to examine what family caregivers of persons with dementia perceive as important types of support/services in relation to experienced negative impact (NI) due to the caregiver situation, and to investigate if caregivers receive the support/services perceived as important. Method The study was based on the Swedish part of the EUROFAMCARE project and included 110 caregivers of persons with dementia. Data were collected primarily through structured telephone interviews. The caregivers were divided into two groups, a higher NI group and a lower NI group, based on the NI scale from the COPE index. Results Getting information and having someone to talk to were perceived as very important types of support/services by the highest proportion of caregivers in both groups. Data indicated only one significant difference; a higher proportion of caregivers in the higher NI group reported being able to participate in activities outside of caring as very important. There was also an indication that a higher proportion of caregivers in the lower NI group perceived information about the disease as very important. Support/services perceived as important by the caregivers were received both to a high and a low degree. Conclusion The results from this study suggest that there is almost no difference between groups of caregivers experiencing higher and lower NI regarding their perception of what are important types of support/services. The caregivers rated different types of support/services within the areas of information, relief and counselling as very important. Copyright © 2009 John Wiley & Sons, Ltd. [source] The health status of family caregivers in Taiwan: an analysis of gender differencesINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 9 2005Chii-Jun Chiou Abstract Background Many studies have assessed the impact of caregivers' work activities on the caregiver. There is growing concern about the ever-increasing problems, both physical and physiological, faced by health care workers who provide care for the ill and incapacitated. Aim The aim of the study was to examine what, if any, differences exist between male and female caregivers. This study primarily focused on caregivers who were taking care of a family member. Method Three hundred and eighty-eight caregivers (280 females and 108 males) were recruited from 16 randomly selected home-care agencies in Southern Taiwan. The participants completed the Chinese Health Questionnaire-12 and the Self-Rated Health Scale. They also completed questionnaires drawn up specifically for the purpose of this study. Results Compared to the male caregivers, the female caregivers more often reported they suffered from symptoms of lack of well being, a decrease in psychosocial health and overall self-rated health. Conclusion The results reiterate the importance of considering gender differentiation in the caregiving role. Major differences were found in the extent to which negative health consequences were experienced by the male and female caregivers. The results suggest that caregivers, especially female caregivers, urgently require adequate professional health care assistance in order to reduce the negative physical and physiological effects of caregiving on the health caregiver. Copyright © 2005 John Wiley & Sons, Ltd. [source] Gender, kinship and caregiver burden: the case of community-dwelling memory impaired seniorsINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 8 2003Neale R. Chumbler Abstract Background This study examined whether there were gender and kinship (spouse, child, more distant relative) differences in caregiver burden. It further examined the constellation of gender and kinship by examining whether adult daughter caregivers experienced greater burden compared to wives, husbands, sons, and other more distant relatives. Methods The sample consisted of 305 family caregivers of memory-impaired individuals who were age 70 years or older and resided in non-institutional settings in Arkansas. A cross-sectional design was employed using validated measures to assess both the memory-impaired elders' and family caregivers' self-reported physical and memory status. Results After controlling for the age and health status characteristics of the memory-impaired elder, sociodemographic and health status characteristics of the family caregiver, and the caregiver coping response (measured by the sense of coherence), multiple regression analyses found kinship, but not gender differences in caregiver burden. Adult children experienced more caregiver burden than more distant relatives. There were no significant differences in caregiver burden between adult children and spouses. Adult daughters had greater caregiver burden scores compared to more distant relatives, but had comparable scores to wives, sons, and husbands. Other significant correlates of burden included caregiver personal characteristics (age and ethnicity) and the sense of coherence. Conclusions The study discusses the practice implications of adult children and adult daughters' propensity to suffer burden when caring for their memory-impaired parents living in the community. It also discusses the relevance of caregiver personal characteristics and the sense of coherence as correlates of burden. Copyright © 2003 John Wiley & Sons, Ltd. [source] Family caregiving of persons living with HIV/AIDS in Thailand: Caregiver burden, an outcome measureINTERNATIONAL JOURNAL OF NURSING PRACTICE, Issue 3 2006Niranart Vithayachockitikhun RN MSN PhD-student The present paper provides an initial picture of HIV/AIDS-affected families. It is evident that families play a major role of support for HIV/AIDS patients in Thai society. Caregiver burden is one of the patient-related outcomes, which is the most common outcome measure in caregiver research. The demands on the family caregivers of these patients are enormous and need to be addressed. The determinants that are associated with caregiver burden such as caregiver characteristics, patient characteristics and social stigma are important for nurses to minimize the burden of care so that appropriate interventions can be developed for persons with HIV/AIDS and family members who share the work of managing their care at home. [source] Living with uncertainty: concept advancementJOURNAL OF ADVANCED NURSING, Issue 6 2007Janice Penrod Abstract Aim., This paper reports a study to demonstrate how the scientific understanding of the concept of uncertainty was advanced through a phenomenological study of living with uncertainty. Background., Techniques for concept analysis have evolved to subsume strategies for advancing a concept towards greater clarity and utility for research and practice. Recently, it has been argued that a clear delineation of techniques for concept analysis as separate and distinct from techniques of concept advancement is warranted. This article applies such delineated processes to demonstrate the advancement of the concept of uncertainty. Method., Concept analysis was used to establish an integrated understanding of the state of the science. Gaps in understanding were carefully analysed, resulting in the research question guiding the next phase of concept advancement: what is the nature of the lived experience of uncertainty? A phenomenological investigation of the experience of uncertainty among family caregivers was conducted. Then, using methods of template comparison, the conceptual attributes identified through the phenomenological study were compared and contrasted with the theoretical definition derived through concept analysis. Finally, a new conceptual definition of higher order abstraction, with greater pragmatic utility, was derived. Findings., Uncertainty is rooted in the individual's perception of outcomes or meaning of a situation. Such perceptions challenge one's sense of confidence and/or control to yield varied types and modes of uncertainty. Uncertainty is present oriented. Both cognitive and precognitive ways of knowing are influential in ascribing meaning, anticipating outcomes and adapting strategies. Conclusions., One's sense of confidence and sense of control are primary essences that determine the nature of the experience of uncertainty. The experience of living with uncertainty is dynamic, with fluctuations in the types and modes of uncertainty in response to precognitive and cognitive ways of knowing. Probabilistic paradigms preclude existential and situational modes of uncertainty for which probabilities cannot be appreciated. [source] The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sampleJOURNAL OF ADVANCED NURSING, Issue 3 2000Yea-Ing Lotus Shyu RN PhD The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services. [source] Agreement Between Patient and Proxy Responses of Health-Related Quality of Life After Hip FractureJOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 7 2005C. Allyson Jones PT Objectives: To examine agreement between patient and proxy respondents on health-related quality of life (HRQL) over time during the 6-month recovery after hip fracture. Design: Prospective longitudinal cohort study. Setting: A healthcare region serving Edmonton, Alberta, and the surrounding area. Participants: Two hundred forty-five patients aged 65 and older, were treated for hip fracture, and had Mini-Mental State Examination scores greater than 17; 245 family caregivers participated as proxy respondents. Measurements: Primary outcome was HRQL (Health Utilities Mark 2 and Mark 3). Interviews were completed within 5 days after surgery and at 1, 3, and 6 months. Agreement was evaluated using intraclass correlation coefficients (ICCs). Results: Agreement was considered moderate to excellent for HRQL. ICC values ranged from 0.50 to 0.85 (P<.001) for physically based observable dimensions of health status and from 0.32 to 0.66 (P<.01) for less-observable dimensions. Agreement improved with time. Time and the number of days between patient and proxy interviews were significant factors in accounting for patient,proxy differences. Conclusion: Although proxy and patient responses are not interchangeable, proxy responses provide an option for assessing function and health status in patients who are unable to respond on their own behalf. [source] Predictors of Nursing Home Placement in African Americans with DementiaJOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 3 2004Joseph E. Gaugler PhD The objective of the present study was to identify predictors of institutionalization in African Americans who suffer from dementia. Data were derived from the Medicare Alzheimer's Disease Demonstration Evaluation (MADDE), which collected information on Alzheimer's patients and their family caregivers over a 3-year period. The baseline MADDE sample included 667 older African Americans suffering from dementia recruited from eight catchment areas in the United States. A Cox proportional hazards model was used to create a predictive model of institutionalization. Subsequent analyses found that care recipient age, sex, Medicaid eligibility, and cognitive impairment; site; and caregiving burden were significant predictors of time to placement. The results, among the first to examine predictors of nursing home placement of cognitively impaired African Americans, emphasize the clinical implications and complex interplay of race, dementia, and caregiving context in the institutionalization process. [source] Rapid Emergency Department Intervention for Older People Reduces Risk of Functional Decline: Results of a Multicenter Randomized TrialJOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 10 2001DrPH, Jane McCusker MD OBJECTIVES: To determine the effectiveness of a two-stage (screening and nursing assessment) intervention for older patients in the emergency department (ED) who are at increased risk of functional decline and other adverse outcomes. DESIGN: Controlled trial, randomized by day of ED visit, with follow-up at 1 and 4 months. SETTING: Four university-affiliated hospitals in Montreal. PARTICIPANTS: Patients age 65 and older expected to be released from the ED to the community with a score of 2 or more on the Identification of Seniors At Risk (ISAR) screening tool and their primary family caregivers. One hundred seventy-eight were randomized to the intervention, 210 to usual care. INTERVENTION: The intervention consisted of disclosure of results of the ISAR screen, a brief standardized nursing assessment in the ED, notification of the primary care physician and home care providers, and other referrals as needed. The control group received usual care, without disclosure of the screening result. MEASUREMENTS: Patient outcomes assessed at 4 months after enrollment included functional decline (increased dependence on the Older American Resources and Services activities of daily living scale or death) and depressive symptoms (as assessed by the short Geriatric Depression Scale). Caregiver outcomes, also assessed at baseline and 4 months, included the physical and mental summary scales of the Medical Outcomes Study Short Form-36. Patient and caregiver satisfaction with care were assessed 1 month after enrollment. RESULTS: The intervention increased the rate of referral to the primary care physician and to home care services. The intervention was associated with a significantly reduced rate of functional decline at 4 months, in both unadjusted (odds ratio (OR) = 0.60, 95% confidence interval (CI) = 0.36,0.99) and adjusted (OR = 0.53, 95% CI = 0.31,0.91) analyses. There was no intervention effect on patient depressive symptoms, caregiver outcomes, or satisfaction with care. CONCLUSION: A two-stage ED intervention, consisting of screening with the ISAR tool followed by a brief, standardized nursing assessment and referral to primary and home care services, significantly reduced the rate of subsequent functional decline. J Am Geriatr Soc 49:1272,1281, 2001. [source] The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in TaiwanJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 3 2007Yueh-Ching Chou Background, Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods, A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results, The mean score for ,physical' was highest and that for ,environment' was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions, The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes. [source] Promoting the health of people with chronic obstructive pulmonary disease: patients' and carers' viewsJOURNAL OF CLINICAL NURSING, Issue 3-4 2010Ann Caress Aims and objectives., The aim of this study was to generate in-depth insights into patients' and family members' understanding of the causation, progression and prevention of chronic obstructive pulmonary disease and the role of health promotion with this population. In particular, we were interested in identifying the ways patients and family members considered that they could maximise their (patients') health, in the presence of this disease. Background., Chronic obstructive pulmonary disease is highly prevalent and a significant cause of morbidity and mortality, impacting on quality of life and healthcare expenditure. Health promotion is, therefore, an important consideration. There are few examples in the literature of health promotion programmes for this population, including those directed at smoking cessation, which also focus on the family or significant others. Design., An exploratory, descriptive design was employed. Method., Semi-structured, audio-recorded interviews were conducted with 14 patients and 12 family caregivers. Interviews were transcribed verbatim and thematically analysed using content analysis procedures which captured the meaning of the data. Results., The three main themes were ,health promotion: what's that?', ,community resources for health promotion' and ,it wasn't just the smoking'. Many participants seemed unaware that their health might benefit from a healthier life style and provided little spontaneous information on any activities they carried out to maintain or improve their health. Conclusions., This study highlighted a dearth of health promoting activity amongst people affected by chronic obstructive pulmonary disease. The reality for most patients was to manage the day-to-day demands that the symptoms of the disease imposed on them. Our data suggest that a more wide-ranging approach, encompassing aspects of health promotion, might be welcomed by many patients and their family carers. Relevance to clinical practice., The findings from this study highlight gaps in patients' and carers' understanding of the potential role of health promotion in chronic obstructive pulmonary disease and areas for intervention by health professionals. With the increase in smoking rates of women and predicted future increases in chronic obstructive pulmonary disease, it is imperative that health professionals find effective ways to provide support and health promotive care for patients and families. [source] Hospital discharge planning for frail older people and their family.JOURNAL OF CLINICAL NURSING, Issue 18 2009Are we delivering best practice? Aims and objectives., This paper examined the available evidence concerning hospital discharge practices for frail older people and their family caregivers and what practices were most beneficial for this group. Background., Hospital discharge practices are placing an increasing burden of care on the family caregiver. Discharge planning and execution is significant for older patients where inadequate practices can be linked to adverse outcomes and an increased risk of readmission. Design., Literature review. Methods., A review of English language literature published after 1995 on hospital discharge of frail older people and family carer's experiences. Results., Numerous factors impact on the hospital discharge planning of the frail older person and their family carer's that when categorised focus on the role that discharge planning plays in bridging the gap between the care provided in hospital and the care needed in the community, its potential to reduce the length of hospital stay, the impact of the discharge process on family carer's and the need for a coordinated health professional approach that includes dissemination of information, clear communication and active support. Conclusion., The current evidence indicates that hospital discharge planning for frail older people can be improved if interventions address family inclusion and education, communication between health care workers and family, interdisciplinary communication and ongoing support after discharge. Interventions should commence well before discharge. Relevance to clinical practice., An awareness of how the execution of the hospital discharge plan is perceived by the principal family carer of a frail older person, will allow nurses and others involved with the discharge process to better reconcile the family caregivers' needs and expectations with the discharge process offered by their facility. The research shows there is a direct correlation between the quality of discharge planning and readmission to hospital. [source] Seizing possibilities for positive family caregiving in nursing homesJOURNAL OF CLINICAL NURSING, Issue 8 2007Ursula Kellett PhD Aims., This paper explores the ways family members reconstruct meaning through seizing possibilities for positive caregiving in nursing homes. Background., The importance of the ability of family caregivers to adapt and accommodate has been well documented in international family caregiving research. Through engagement in caregiving activities, families learn to modify, adapt and accommodate to changes in their situation and relationships. The support family caregivers experience in learning to accommodate change is crucial in enabling them to reconstruct positive aspects of caregiving in a long-term aged care context. Method., In this study, a hermeneutic phenomenological approach was adopted informed by the philosophical world views of Heidegger and Gadamer. Data collected by in-depth interviews and participant observations, from a purposeful sample of 14 family caregivers, underwent hermeneutic analysis. Results., Five shared meanings associated with seizing possibilities for positive caregiving were revealed: accommodating new and different ways of caring; feeling a part of the nursing home community; seeing the whole picture; learning to care in stress-reducing ways and learning to seize possibilities for self. Conclusion., This paper illustrates how families, through caregiving experience in nursing homes, learn to become active managers, negotiating, accommodating and redeveloping a sense of future viewed with hope, strength and positive anticipation. Relevance to clinical practice., By highlighting what is attributed significance by families, a critical examination of the difficult issues which obstruct the development of meaningful partnerships among nurses, family and their relatives is facilitated. In particular, an examination of tensions at an ideological level supports the need for future research to focus its efforts on examining the ways of implementing nursing care that facilitates partnerships that incorporate and build upon positive and equal relations among staff, families and residents in the context of the nursing home setting. [source] Hospitalized elders and family caregivers: a typology of family worryJOURNAL OF CLINICAL NURSING, Issue 1 2005Hong Li PhD Objective., This qualitative study explored the kinds of worry that family caregivers experience when their older relatives are hospitalized. Background., 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. Design., A qualitative descriptive design with Loftland and Loftland (1984) approach for the study of a phenomenon occurring in a social setting was used. Method., 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. Results., 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. Conclusions., The findings of this pilot study provide nurses with the initial knowledge of the typology of family worry associated with elderly relatives' hospitalizations. Relevance to clinical practice., 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. [source] Efficient assessment of social problem-solving abilities in medical and rehabilitation settings: a rasch analysis of the social problem-solving inventory-revisedJOURNAL OF CLINICAL PSYCHOLOGY, Issue 7 2009Laura E. Dreer Abstract The Social Problem Solving Inventory-Revised Scale (SPSI-R) has been shown to be a reliable and valid self-report measure of social problem-solving abilities. In busy medical and rehabilitation settings, a brief and efficient screening version with psychometric properties similar to the SPSI-R would have numerous benefits including decreased patient and caregiver assessment burden and administration/scoring time. Thus, the aim of the current study was to identify items from the SPSI-R that would provide for a more efficient assessment of global social problem-solving abilities. This study consisted of three independent samples: 121 persons in low-vision rehabilitation (M age=71 years old, SD=15.53), 301 persons living with diabetes mellitus (M age=58, and SD=14.85), and 131 family caregivers of persons with severe disabilities (M age=56 years old, SD=12.15). All persons completed a version of the SPSI-R, Center for Epidemiological Studies Depression Scale (CES-D), and the Satisfaction with Life Scale (SWLS). Using Rasch scaling of the SPSI-R short-form, we identified a subset of 10 items that reflected the five-component model of social problem solving. The 10 items were separately validated on the sample of persons living with diabetes mellitus and the sample of family caregivers of persons with severe disabilities. Results indicate that the efficient 10-item version, analyzed separately for all three samples, demonstrated good reliability and validity characteristics similar to the established SPSI-R short form. The 10-item version of the SPSI-R represents a brief, effective way in which clinicians and researchers in busy health care settings can quickly assess global problem-solving abilities and identify those persons at-risk for complicated adjustment. Implications for the assessment of social problem-solving abilities are discussed. © 2009 Wiley Periodicals, Inc. J Clin Psychol 65: 1,15, 2009. [source] A new scale to measure family members' perception of community health care services for persons with Huntington diseaseJOURNAL OF EVALUATION IN CLINICAL PRACTICE, Issue 3 2010Valmi D. Sousa PhD CNS-BC RN Abstract Rationale, aims, and objectives, Huntington disease (HD) is a progressive genetic brain disease leading to disruptive cognitive, behavioural and physical impairments. Persons with the condition and their caregivers need appropriate and accessible health care services to help them manage the disease adequately. The purpose of this study was to evaluate the psychometric properties of a new scale that measures family members' perception of community health care services (CHCS) for persons with HD. Methods, A methodological design was used to examine the initial reliability and dimensionality of the CHCS scale among 245 family members of persons with a diagnosis of HD. Data analysis consisted of computing Cronbach's , coefficients, calculating the 95% confidence interval for , and performing item-analysis and exploratory factor analysis. Results, Reliability of the scale based on Cronbach's , was 0.83. Factor analysis using principal component analysis and varimax rotation suggested that three interpretable factors underlie the scale. Factor 1, HD knowledge, had , = 0.82, eigenvalue of 4.67 and explained 33.42% of the variance; factor 2, HD community resources, had , = 0.62, eigenvalue of 1.68 and explained 12.02% of the variance; factor 3, individualized HD management, had , = 0.77, eigenvalue of 1.45 and explained 10.39% of the variance. Conclusions, Findings from this study provide evidence of both construct validity and internal consistency reliability of the CHCS scale. Further psychometric testing of the scale in other samples of family caregivers of persons with HD is warranted. [source] | |||||||||||||||||||||||||||||||