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Deena J Chisolm - One of the best experts on this subject based on the ideXlab platform.
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sickle cell trait knowledge and health literacy in Caregivers who receive in person sickle cell trait education
Blood, 2016Co-Authors: Susan E Creary, Ismahan Adan, Joseph Stanek, Sarah H Obrien, Deena J Chisolm, Tanica Jeffries, Kristin Zajo, Elizabeth VargaAbstract:Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to Caregivers. Interventions that increase Caregivers9 SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved Caregivers9 SCT knowledge and to assess Caregivers9 satisfaction with their SCT education. Methods Nationwide Children9s Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that Caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course . From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking Caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores Results We recruited 114/374 eligible Caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many Caregivers (52.2%) had NVS scores Caregivers9 median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p Discussion Our study suggests that Caregivers9 baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these Caregivers may have lower baseline SCT knowledge and health literacy. Assessing Caregivers9 health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all Caregivers, if Caregivers9 SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.
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psychosocial health e health literacy and perceptions of e health as predictors and moderators of e health use among Caregivers of children with special healthcare needs
Telemedicine Journal and E-health, 2015Co-Authors: Madhurima Sarkar, Deena J Chisolm, Lee M Sanders, Kelly J KelleherAbstract:Abstract Objectives: In this study, we explored the relationships between the psychosocial health of Caregivers of children with special healthcare needs and their e-health use. Additionally, the analysis examined moderating effects of a caregiver's perceptions of e-health and his or her e-health literacy on the associations among four domains of psychosocial health and e-health use. Materials and Methods: To date, 313 Caregivers of children, 12–18 years of age, with special healthcare needs have been recruited. Covariate-adjusted multivariable regressions determined associations between psychosocial health domains of Caregivers and e-health use. E-health literacy and perceptions of e-health were further tested as moderators of the relationship between psychosocial health and e-health use. Results: Among the caregiver population, 31% had problems with social functioning, 36.1% with communication, 43.3% with family relationships, and 46.3% with worrying for their child. After adjusting for demographic vari...
Richard Schulz - One of the best experts on this subject based on the ideXlab platform.
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a videophone psychosocial intervention for dementia Caregivers
American Journal of Geriatric Psychiatry, 2013Co-Authors: Sara J. Czaja, Richard Schulz, Sankaran N Nair, David A. Loewenstein, Dolores PerdomoAbstract:Background/Objectives Available services and intervention programs for dementia Caregivers are often underutilized because of issues such as cost, logistics, lack of knowledge about available services, or insufficient support from others. Information technologies offer the potential of removing these barriers and facilitating the ability of Caregivers to access needed support. This project evaluated the feasibility and efficacy of technology-based psychosocial intervention among minority family Caregivers of dementia patients. Design A feasibility and efficacy trial. Setting Participants' homes in the Greater Miami Community. Participants One hundred ten (56 Hispanic American and 54 African American) Caregivers of patients with dementia. Intervention A technology-based multi-component psychosocial intervention was delivered in-home and via videophone technology over 5 months. The intervention was modeled after the REACH II intervention and targeted known areas of caregiver risk. Measurement Standardized measures of depression, caregiver burden, social support, and the Caregivers' perception of the caregiver's experience were administered at baseline and 5 months post-randomization. Results Overall, Caregivers who received the intervention reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving experience. No effect was observed for depression. Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use. Conclusions A technology-based format was feasible for delivering a multi-component intervention to minority family dementia Caregivers. The intervention improved caregiver outcomes for both Hispanic and African American Caregivers. The results suggest that technology may help eliminate disparities in access to caregiver intervention programs.
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the impact of family Caregivers on potentially inappropriate medication use in noninstitutionalized older adults with dementia
American Journal of Geriatric Pharmacotherapy, 2012Co-Authors: Joshua M Thorpe, Carolyn T Thorpe, Korey A Kennelty, Walid F Gellad, Richard SchulzAbstract:Abstract Background The risk of potentially inappropriate medication (PIM), both prescription and over-the-counter, use in dementia patients is high. Informal Caregivers often facilitate patients' use of medications, but the effect of caregiver factors on PIM use has not been a focus of previous research. Objective The aim of this study was to examine PIM use in dementia patients and Caregivers and identify caregiver risk factors for PIM use in dementia patients. Methods We conducted a secondary data analysis of the baseline wave of the Resources for Enhancing Alzheimer's Caregiver's Health study. The sample comprised 566 persons with dementia aged 65 and older and their coresiding family caregiver. PIM was defined using the 2003 Beers criteria and was examined in both dementia patients and their Caregivers. Caregiver and patient risk factors included a range of sociodemographic and health variables. Results In dementia patients, 33% were taking at least 1 PIM, and 39% of their Caregivers were also taking a PIM. In fully adjusted models, the following caregiver factors were associated with an increased risk of dementia patient PIM use: caregiver's own PIM use, spouse Caregivers, Hispanic Caregivers, and greater number of years that the caregiver has lived in the United States. Increased caregiver age was associated with a decreased risk of PIM use in patients. Conclusions PIM use may be higher in dementia patients and their informal Caregivers compared with the general older adult population. Further, patterns of medication use in 1 member of the dyad may influence PIM risk in the other dyad member. These results suggest that interventions to increase appropriate medication use in dementia patients and their Caregivers should target both members of the dyad and target over-the-counter agents along with prescription medications.
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verbal communication among alzheimer s disease patients their Caregivers and primary care physicians during primary care office visits
Patient Education and Counseling, 2009Co-Authors: Karen L Schmidt, Jennifer H Lingler, Richard SchulzAbstract:Abstract Objective Primary care visits of patients with Alzheimer's disease (AD) often involve communication among patients, family Caregivers, and primary care physicians (PCPs). The objective of this study was to understand the nature of each individual's verbal participation in these triadic interactions. Methods To define the verbal communication dynamics of AD care triads, we compared verbal participation (percent of total visit speech) by each participant in patient/caregiver/PCP triads. Twenty-three triads were audio taped during a routine primary care visit. Rates of verbal participation were described and effects of patient cognitive status (MMSE score, verbal fluency) on verbal participation were assessed. Results PCP verbal participation was highest at 53% of total visit speech, followed by Caregivers (31%) and patients (16%). Patient cognitive measures were related to patient and caregiver verbal participation, but not to PCP participation. Caregiver satisfaction with interpersonal treatment by PCP was positively related to caregiver's own verbal participation. Conclusion Caregivers of AD patients and PCPs maintain active, coordinated verbal participation in primary care visits while patients participate less. Practice implications Encouraging verbal participation by AD patients and their Caregivers may increase the AD patient's active role and caregiver satisfaction with primary care visits.
Vera P M Schepers - One of the best experts on this subject based on the ideXlab platform.
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respite care after acquired brain injury the well being of Caregivers and patients
Archives of Physical Medicine and Rehabilitation, 2012Co-Authors: Sanne M J Smeets, Caroline M Van Heugten, Johanna F Geboers, Johanna M A Vissermeily, Vera P M SchepersAbstract:Abstract Smeets SM, van Heugten CM, Geboers JF, Visser-Meily JM, Schepers VP. Respite care after acquired brain injury: the well-being of Caregivers and patients. Objective To investigate satisfaction with respite care, the well-being of informal Caregivers and patients with acquired brain injury (ABI) who receive respite care by day-care activity centers, and factors related to caregiver well-being. Design Cross-sectional cohort study. Setting Adult day-care activity centers. Participants A sample of Caregivers and patients (N=108) with ABI (mean of 8y since injury) enrolled in 1 of 7 day-care activity centers. The sample consisted predominantly (70%) of stroke patients. Intervention Respite care by adult day-care activity centers. Main Outcome Measures Well-being was defined in terms of life satisfaction (Life Satisfaction Questionnaire [LiSat-9]), emotional functioning (Hospital Anxiety and Depression Scale [HADS]), and caregiver burden (Caregiver Strain Index [CSI]). Factors related to well-being were personal, injury related, and psychological. Results Satisfaction with day-care activity center care was high for Caregivers (7.8) and patients (8.1). Caregiver satisfaction with care was unrelated to caregiver well-being. Most Caregivers (61%) showed low life satisfaction and high subjective burden (69%), and 33% of Caregivers and 42% of the patients reported depressive symptoms. Caregiver well-being was positively correlated with a high sense of mastery of Caregivers and patients and low passive coping of the patient (LiSat-9 R 2 =.32; HADS R 2 =.55; CSI R 2 =.35). Conclusions This study emphasizes the need for care for both Caregivers and patients in the chronic phase after ABI. Although respite care is highly appreciated, it is not sufficient for Caregivers to attain a healthy level of well-being. Results indicate that caregiver well-being might improve by targeting passive coping and mastery skills of Caregivers and patients. Continuous support for both Caregivers and patients is needed.
Terrence Shaneyfelt - One of the best experts on this subject based on the ideXlab platform.
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family caregiving in heart failure
Nursing Research, 2006Co-Authors: Tamilyn Bakas, Susan J Pressler, Elizabeth A Johnson, Julie A Nauser, Terrence ShaneyfeltAbstract:BACKGROUND: Little is known about the experiences of family Caregivers of patients with heart failure, despite the fact that these patients have disabling symptoms and diminished functioning that could lead to caregiver stress. OBJECTIVES: Based on a caregiver model, the aims of this study were to (a) examine relationships among age, perceived control over managing heart problems, perceived difficulty with tasks, perceived outcomes, and perceived mental and general health among Caregivers of persons with heart failure; (b) describe Caregivers' perceptions of control over managing heart problems; and (c) describe the tasks and outcomes perceived as being most difficult and negative by Caregivers. METHODS: A sample of 21 family Caregivers of patients with heart failure completed the study questionnaires. Most were women (n = 20), spouses (n = 20), and White (n = 18), with a mean age of 59.6 years. The patients with heart failure were male veterans with New York Heart Association (NYHA) Class II, III, or IV. Descriptive statistics and Spearman's rho correlations were used. RESULTS: Younger Caregivers perceived their tasks to be more difficult and their mental health to be poorer. Caregivers' perceived control over managing heart problems was related moderately to poorer perceived mental health. Greater perceived difficulty with tasks was associated with negative perceptions of caregiver outcomes and poorer perceived mental health. Negative perceptions of caregiver outcomes were associated strongly with perceptions of poorer mental health. Performing household tasks and managing patient behaviors were most difficult, and the caregiver's emotional and financial well-being, time for social activities, and general health had deteriorated. CONCLUSIONS: The preliminary results support the model. Future longitudinal studies are needed in larger samples to evaluate predictors of caregiver-perceived negative outcomes to identify priority areas for interventions.
Solve Elmstahl - One of the best experts on this subject based on the ideXlab platform.
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psychosocial intervention for family Caregivers of people with dementia reduces caregiver s burden development and effect after 6 and 12 months
Scandinavian Journal of Caring Sciences, 2008Co-Authors: Andren Signe, Solve ElmstahlAbstract:A number of different intervention programmes have been described in the literature for Caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family Caregivers: 153 Caregivers who underwent intervention and 155 control Caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on Caregivers in the intervention group was found early in the progression of dementia and in Caregivers with impaired health. These findings emphasize the importance of identifying family Caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for Caregivers of people with dementia. (Less)
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psychosocial intervention for family Caregivers of people with dementia reduces caregiver s burden development and effect after 6 and 12 months
Scandinavian Journal of Caring Sciences, 2008Co-Authors: Andren Signe, Solve ElmstahlAbstract:A number of different intervention programmes have been described in the literature for Caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family Caregivers: 153 Caregivers who underwent intervention and 155 control Caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on Caregivers in the intervention group was found early in the progression of dementia and in Caregivers with impaired health. These findings emphasize the importance of identifying family Caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for Caregivers of people with dementia.
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family Caregivers subjective experiences of satisfaction in dementia care aspects of burden subjective health and sense of coherence
Scandinavian Journal of Caring Sciences, 2005Co-Authors: Signe Andren, Solve ElmstahlAbstract:Family Caregivers experience both positive and negative reactions in caregiving situations. There has been considerably less published about the positive aspects, however. The general aim of this study was to explore a previously developed instrument to study rewards gained by Caregivers and to determine the factors associated with satisfaction in family members caring for patients with dementia living at home. The study group consisted of 153 such family members. Standardized interview schedules exploring different background characteristics, and instruments for assessment of the degree of dementia in the patients and the Caregivers' total burden and degree of satisfaction were used. Factorial analysis of the Caregiver's Assessment of Satisfactions Index was performed and it became more specific for conditions of dementia when it was reduced. Stressors as measured by the Caregiver Burden scale and satisfaction can coexist and assess different aspects of the caregiver's situation. The caregiver can perceive both moderate burden and great satisfaction at the same time, and further studies may help to broaden our understanding of how we can reduce the degree of burden whilst increasing the sense of satisfaction.
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family caregiving in dementia an analysis of the caregiver s burden and the breaking point when home care becomes inadequate
Scandinavian Journal of Public Health, 2000Co-Authors: Lena Annerstedt, Solve Elmstahl, Bengt Ingvad, Svenmarten SamuelssonAbstract:The burden of Caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver burden has probably reached its upper limit. Primary family Caregivers of 39 DAT and 40 VD patients who were being considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden: general strain, isolation, disappointment, and emotional involvement, were correlated with the patients' diagnoses, abilities, and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver's gender, social class, and previous institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the patients' ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers. Different symptornatology in patients of the two di...
