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William E Haley - One of the best experts on this subject based on the ideXlab platform.
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stroke survivor and Family Caregiver reports of Caregiver engagement in stroke care
Rehabilitation Nursing, 2017Co-Authors: William E Haley, Victoria R Marino, Orla C Sheehan, David J Rhodes, Brett M Kissela, David L RothAbstract:Purpose The aim of the study was to identify areas of Caregiver engagement in stroke care as viewed by stroke survivors and Family Caregivers. Design Interviews with stroke survivor/Caregiver dyads (N = 71) from a population-based study of incident stroke. Methods We interviewed stroke survivors and Caregivers about Caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and Caregiver reports and analyzed responses to open-ended questions. Findings Stroke survivor and Caregiver reports of engagement were highly correlated (r = .89), although Caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and Caregivers agreed that Caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms. Conclusions Stroke survivors and Caregivers report significant and impactful Caregiver engagement throughout the course of stroke. Clinical relevance Clinicians may enhance stroke care by recognizing and facilitating Caregiver efforts across all phases of stroke care.
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the Family Caregiver of the older cancer patient
Hematology-oncology Clinics of North America, 2000Co-Authors: Michael A Weitzner, William E Haley, Hongbin ChenAbstract:It is estimated that in 1999 about 1,221,800 new cases of invasive cancer will be diagnosed in the United States, and approximately 563,100 people are expected to die of cancer. 32 More than 60% of all cases of cancer occur in persons aged over 65 years, and the cancer mortality rate in those aged over 55 years has increased by 17%. 22 Families usually prefer to care for disabled relatives themselves, and older adults with chronic disease and disability usually want to remain in their homes, 15 where they can have a comfortable environment, maintain a normal life, and have access to Family and friends. In recent years, shortened hospital stays and expanded outpatient care services for patients receiving adjuvant cancer treatment have further shifted the caregiving responsibility from health care professionals to the patients' families. 30 Limited community services and the financial pressure associated with hospital and nursing home care also lead Family members, particularly spouses and adult daughters, to assume Caregiver roles. Family caregiving for older adults with cancer is the result of both demographic and health care delivery changes. Cancer causes changes in the Family's identity, roles, and daily functioning, and the effect of such changes may be profound and long-lasting, regardless of the outcome of the disease. 3 Despite the benefits of home care in cost-saving and convenience, Family Caregivers must deal with many unfamiliar situations and unexpected demands throughout the treatment and progress of the disease. Because caregiving may lead to hidden costs of care (negative effects experienced by the Family members), attention to caregiving issues is important in understanding how this major, unpaid component of the health care and long-term care system works and what can be done to minimize the burdens of caregiving. 15 Family involvement is also essential for the successful, comprehensive care of geriatric oncology patients; Caregivers must work closely with doctors to monitor the patients' disease status, assist patients with self-care, and implement treatment regimens. With improvements in cancer diagnosis, treatment, and palliative care, cancer patients survive longer, and the length of the caregiving period has extended from days or weeks to months or years. The chronic yet progressive nature of this illness suggests that Caregivers of cancer patients must face various challenges in different stages of the disease and with different levels of treatment. Greater psychosocial problems may arise when cancer metastasizes, 51 and the terminal phase, with the impending bereavement period, sees the peak impact. 15 Although one study found a moderate feeling of preparedness in spouses of recently diagnosed elderly cancer patients, 50 Family Caregivers also expressed unmet needs for social, volunteer, and professional support as their own physical and emotional health suffered. 61 More research is needed to document the specific issues involved in Family caregiving for older patients with cancer.
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the Family Caregiver s role in alzheimer s disease
Neurology, 1997Co-Authors: William E HaleyAbstract:Family Caregivers play an essential role in caring for patients with Alzheimer's disease (AD), but caregiving stress often leads to problems in Caregivers' mental and physical health. Certain factors predict Caregiver distress, such as the presence of patient behavioral problems and the nature of the Caregivers' social supports and coping responses. Several tools are available to assess the level of Caregiver distress: The results are useful in research as well as in the clinical setting, in which they can provide insight into patient problems. Caregivers value written information about AD. They also value support groups and respite services, although the effects of these interventions are commonly less dramatic than the effects achieved by more intensive psychosocial interventions. Physicians and other health care professionals are obliged to address the concerns of AD Family Caregivers because they play a crucial role in the optimal care of these patients.
Azusa Arimoto - One of the best experts on this subject based on the ideXlab platform.
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development of a Family Caregiver needs assessment scale for end of life care for senility at home fade
PLOS ONE, 2019Co-Authors: Midori Saito, Etsuko Tadaka, Azusa ArimotoAbstract:Aim This study aimed to develop a “Family Caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce Caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
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Development of a Family Caregiver needs-assessment scale for end-of-life care for senility at home (FADE)
PLOS ONE, 2019Co-Authors: Midori Saito, Etsuko Tadaka, Azusa ArimotoAbstract:Aim This study aimed to develop a “Family Caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p
Patricia G. Archbold - One of the best experts on this subject based on the ideXlab platform.
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ASSESSING Family Caregiver PREPAREDNESS: COMPETENCIES FOR THE CAREGIVING ROLE
Innovation in Aging, 2018Co-Authors: Theresa A Harvath, Patricia G. Archbold, Barbara J. Stewart, J Mongoven, K BettegaAbstract:In early 2015, AARP conducted a national survey of Family caregiving and identified that many Family Caregivers struggle with tasks that nurses typically perform, referred to as “medical/nursing tasks.” Many of these Family Caregivers report feeling ill-prepared for their role. We developed a set of Family Caregiver competencies based on the work of Archbold & Stewart (1995) in order to provide a framework to assess Family Caregiver preparedness for the caregiving role. The domains include: Household Management; Personal Care; Mobility; Surveillance; Emotional and Social Support; Health Care Coordination; Complex Nursing Care; Surrogacy; and Stress Management. These domains and associated tasks were subjected to a validation process using a modified Delphi approach. These competencies can be used to develop tools and resources to assess and support Caregivers’ preparedness to provide culturally appropriate care that reflects the care recipient’s values, preferences and goals of care.
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effects of caregiving demand mutuality and preparedness on Family Caregiver outcomes during cancer treatment
Oncology Nursing Forum, 2008Co-Authors: Karen L Schumacher, Patricia G. Archbold, Barbara J. Stewart, Mildred Caparro, Faith Mutale, Sangeeta AgrawalAbstract:PURPOSE/OBJECTIVES: To test a model of Family caregiving derived from the interactionist approach to role theory that hypothesized that three caregiving role implementation variables (caregiving demand, mutuality between Caregivers and patients, and preparedness for caregiving) would predict multiple caregiving-specific and generic outcomes with different patterns of association across outcomes. DESIGN: Descriptive, correlational. SETTING: Surgical, radiation, and medical oncology settings. SAMPLE: 87 Family Caregivers of adults receiving treatment for solid tumors or lymphoma. METHODS: Caregivers completed the Demand and Difficulty subscales of the Caregiving Burden Scale; the Mutuality, Preparedness, and Global Strain scales of the Family Care Inventory; and the 30-item short form of the Profile of Mood States. Data were analyzed with simultaneous multiple regression. MAIN RESEARCH VARIABLES: Caregiving demand, mutuality, preparedness, caregiving difficulty, global Caregiver strain, tension, depression, anger, fatigue, vigor, confusion, and total mood disturbance. FINDINGS: The model explained statistically significant proportions of variance in each outcome, with different patterns of association across outcomes. Demand was associated most strongly with caregiving difficulty and global strain. Mutuality was associated most strongly with Caregiver anger. Unexpectedly, preparedness was associated more strongly with mood disturbance outcomes than with the caregiving-specific variables of difficulty and strain. CONCLUSIONS: Further research should explore models that address implementation of the caregiving role to better elucidate how Family Caregivers learn and carry out the important role. IMPLICATIONS FOR NURSING: Clinical assessment should include caregiving demand, the quality of the relationship between Caregiver and patient, and preparedness for caregiving. Interventions could be tailored to meet Caregiver needs in each area.
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mutuality and preparedness moderate the effects of caregiving demand on cancer Family Caregiver outcomes
Nursing Research, 2007Co-Authors: Karen L Schumacher, Barbara J. Stewart, Patricia G. ArchboldAbstract:BACKGROUND: Family caregiving researchers have explored the moderating or stress-buffering effects of variables such as coping and social support. However, the quality of the Family Caregiver-patient relationship and preparedness for caregiving have received little attention as potential moderators. OBJECTIVE: To explore whether relationship quality and preparedness moderate the effects of caregiving demand on Caregiver outcomes during cancer treatment. METHODS: Eighty-seven Family Caregivers of patients receiving treatment for cancer completed the Demand and Difficulty subscales of the Caregiving Burden Scale, Mutuality and Preparedness Scales of the Family Care Inventory, and the short form of the Profile of Mood States. Using hierarchical multiple regression analyses, caregiving difficulty and total mood disturbance were regressed on two- and three-way interaction terms for demand, mutuality, and preparedness, controlling for Caregiver age and gender, and the simple effect of each independent variable. RESULTS: Negligible effects for two-way interactions were found. However, the three-way interaction between demand, mutuality, and preparedness explained statistically significant variance in both perceived difficulty of caregiving and total mood disturbance. High mutuality in combination with high preparedness protected Caregivers from adverse outcomes when demand was high. When either mutuality or preparedness was low, Caregivers were at greater risk for negative outcomes when demand was high, but not when demand was low. When both mutuality and preparedness were low, Caregivers were at risk for mood disturbance even when demand was low. DISCUSSION: Analysis of three-way interactions provided new theoretical insights into the protective effects of mutuality and preparedness and demonstrated conditions under which Caregivers are at increased risk for negative outcomes.
Tamilyn Bakas - One of the best experts on this subject based on the ideXlab platform.
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update on the state of the evidence for stroke Family Caregiver and dyad interventions
Stroke, 2017Co-Authors: Tamilyn Bakas, Michael Mccarthy, Elaine T MillerAbstract:Stroke remains a leading cause of serious long-term disability,1 with most stroke survivors returning home under the care of Family members who are often unprepared for the caregiving role and lack training from healthcare providers.2,3 As a result, many stroke Family Caregivers experience burden, depressive symptoms, and reduced health-related quality of life.2,3 Aside from these individual issues, Caregivers commonly experience interpersonal and organizational issues.2,3 Interpersonal issues reflect changes in relationships with the survivor and others, impacting roles and social activities.2 Organizational issues involve difficulty in finding resources and services.2 The American Heart Association/American Stroke Association published a scientific statement with evidence-based recommendations for stroke Family Caregiver and dyad interventions that are summarized in 5 main areas (Table I in the online-only Data Supplement).4 Dyad interventions were defined as those that targeted both the stroke survivor and the Family Caregiver, with both being active participants in the intervention.4 Intervention studies that involved Family Caregivers in the intervention, but did not target the health or well-being of the Caregiver, were not considered to be dyad interventions.4 The recommendations were based on a critical analysis of 17 Caregiver and 15 dyad intervention studies found in the literature between January 1990 and October 2012.4 Because of the rapidly growing literature in this area, the purpose of this article is to provide an update on the state of the evidence for stroke Family Caregiver and dyad interventions published between November 2012 and December 2016. A critical analysis of published stroke Family Caregiver and dyad intervention studies was conducted using the following inclusion criteria: (1) written in the English language; (2) published from November 2012 through December 2016; (3) used a quasi-experimental or experimental research design; (4) involved a …
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evidence for stroke Family Caregiver and dyad interventions a statement for healthcare professionals from the american heart association and american stroke association
Stroke, 2014Co-Authors: Tamilyn Bakas, Patricia C Clark, Margaret Kellyhayes, Rosemarie B King, Barbara J Lutz, Elaine L MillerAbstract:Stroke is a leading cause of severe, long-term disability. Most stroke survivors are cared for in the home by a Family Caregiver. Caregiver stress is a leading cause of stroke survivor institutionalization, which results in significant costs to the healthcare system. Stroke Family Caregiver and dyad intervention studies have reported a variety of outcomes. A critical analysis of 17 Caregiver intervention studies and 15 Caregiver/stroke survivor dyad intervention studies was conducted to provide evidence-based recommendations for the implementation and future design of stroke Family Caregiver and dyad interventions.
Jane B Tornatore - One of the best experts on this subject based on the ideXlab platform.
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the savvy Caregiver program developing and testing a transportable dementia Family Caregiver training program
Gerontologist, 2003Co-Authors: Kenneth Hepburn, Marsha L Lewis, Carey Wexler Sherman, Jane B TornatoreAbstract:Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based Caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the aims of introducing Family Caregivers to the caregiving role, providing them with the knowledge, skills, and attitudes needed to carry out that role, and alerting them to self-care issues. Results from initial field trials dictated a substantial revision of the workshop materials. The next version was field tested in multiple sites in southern rural Minnesota, Colorado, and Alaska. In this expanded testing, participants evaluated the program, and cross-group comparisons were conducted by use of well-established Caregiver well-being scales. Results: Virtually all respondents reported increased skill, knowledge, and confidence, and all would recommend the program to others. A preintervention versus post-intervention analysis indicates that Caregivers' reaction to the overall behavior of the persons for whom they provide care (i.e., "total reaction"), their self-reported burden, and their beliefs about caregiving (emotional enmeshment) changed significantly in directions indicating better Caregiver well-being. Implications: Results suggest that it is feasible to translate a research-based Caregiver intervention into a packaged program that can be adopted in other settings without the direct involvement of the program initiators.
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dementia Family Caregiver training affecting beliefs about caregiving and Caregiver outcomes
Journal of the American Geriatrics Society, 2001Co-Authors: Kenneth Hepburn, Jane B Tornatore, R Sharon N W OstwaldAbstract:OBJECTIVES: Family caregiving is an integral part of the care system for persons with dementing disorders, such as Alzheimer's disease. This study tested role-training intervention as a way to help Family Caregivers appreciate and assume a more clinical belief set about caregiving and thereby ameliorate the adverse outcomes associated with caregiving. DESIGN: Training effectiveness was tested in a trial in which Family care receiver dyads were randomly assigned to training beginning immediately or were placed in a wait-list control group and assigned to receive training in 5 to 6 months, following completion of data collection. SETTING: A community-based 14-hour training program provided in seven weekly 2-hour sessions. The training program curriculum was built on a stress and coping theory base. Recruitment and randomization were ongoing. Programs were begun every 2 months over a two and one half-year period for a total of 16 programs. PARTICIPANTS: Community health and social service agencies referred primary Caregivers and at least one other Family member of community-dwelling persons with dementia to participate. MEASUREMENTS: Data reported in this paper were gathered from each participating Family at entry to the study and 5 months later. Standard measures of beliefs about caregiving, burden, depression, and reaction to care receiver behavior were administered to Caregivers. A standard measure of mental status was administered to the person with dementia and standardized instruments were used to gather information from Caregivers concerning care receivers' behavior and abilities to perform activities of daily living (ADLs). RESULTS: Data were analyzed from 94 Caregiver/care receiver dyads with complete sets of data. Treatment and control Caregivers and care receivers were similar at baseline, and care receivers in both groups declined similarly over the 5-month period. Significant within-group improvements occurred with treatment group Caregivers on measures of beliefs about caregiving (P = .044) and reaction to behavior (P = .001). When outcomes were compared, treatment group Caregivers were significantly different (in the expected direction) from those in the control group on measures of the stress mediator, beliefs (P = .025), and key outcomes, response to behavior (P = .019), depression (P = .040), and burden (P = .051). There was a significant positive association between the strengthened mediator, the Caregivers' having less-emotionally enmeshed beliefs about caregiving roles and responsibilities, and the outcome, namely improvements in burden (P = .019) and depression (P = .007). CONCLUSION: A Caregiver training intervention focused on the work of caregiving and targeted at knowledge, skills, and beliefs benefits Caregivers in important outcome dimensions. The results suggest the benefits of providing information, linkage, and role coaching to dementia Family Caregivers.
