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Content validity and satisfaction with a caregiver-integrated web-based rehabilitation intervention for persons with stroke.

ABSTRACT: Background Family members provide valuable contributions during rehabilitation after stroke, but frequently report higher incidences of burden, depression, and social isolation during caregiving. Thus, effective interventions to reduce stroke impact on the family are needed. Objectives To evaluate the content validity and satisfaction of a caregiver-focused web-based intervention designed to improve stroke survivor physical function while reducing caregiver negative outcomes. Methods Caregivers of individuals with stroke (N = 6) and expert rehabilitation researchers (N = 4) were presented with a novel, web-based intervention (CARE-CITE) designed to foster problem-solving and skill-building while facilitating caregiver involvement during constraint-induced movement therapy. Caregivers rated CARE-CITE for usefulness, ease of use, acceptability, and time to complete. Rehabilitation experts evaluated content for accuracy, feasibility, acceptability, problem relevance and ease of use. Ratings were assessed using a five-point Likert-type response scales (1 = strongly disagree to 5 = strongly agree). Results On average, all caregivers agreed or strongly agreed that the modules were useful (4.42), easy to use (4.60), and acceptable (4.41). Mean total satisfaction score was 4.45, and average review time was 15 min per module. Expert reviewers agreed or strongly agreed that each module was accurate (4.95), feasible (4.8), easy to use (4.86), acceptable (4.96), and had appropriate problem relevance (4.65). Conclusions The CARE-CITE intervention may be a viable program for caregivers of patients with stroke. Currently a pilot study is underway to evaluate the impact of the intervention on caregiver mental health, family conflict around stroke recovery and stroke survivor upper extremity function.

SUBMITTER: Blanton S

PROVIDER: S-EPMC5876148 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

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Content validity and satisfaction with a caregiver-integrated web-based rehabilitation intervention for persons with stroke.

Blanton Sarah S Dunbar Sandra S Clark Patricia C PC

Topics in stroke rehabilitation 20180115 3

Background Family members provide valuable contributions during rehabilitation after stroke, but frequently report higher incidences of burden, depression, and social isolation during caregiving. Thus, effective interventions to reduce stroke impact on the family are needed. Objectives To evaluate the content validity and satisfaction of a caregiver-focused web-based intervention designed to improve stroke survivor physical function while reducing caregiver negative outcomes. Methods Caregivers ...[more]

PMID: 29334344

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Project description:BackgroundFamily carepartner management and support can improve stroke survivor recovery, yet research has placed little emphasis on how to integrate families into the rehabilitation process without increasing negative carepartner outcomes. Our group has developed creative approaches for engaging family carepartners in rehabilitation activities to improve physical and psychosocial health for both the carepartner and stroke survivor. The purpose of this study is to explore a novel, web-based intervention (Carepartner and Constraint-Induced Therapy; CARE-CITE) designed to facilitate positive carepartner involvement during a home-based application of constraint-induced movement therapy (CIMT) for the upper extremity.MethodsThe primary aim of the study is to determine feasibility of CARE-CITE for both stroke survivors and their carepartners. Carepartner mental health, family conflict surrounding stroke recovery, and stroke survivor upper extremity function will be evaluated using an evaluator blinded, two-group experimental design (blocked randomization protocol according to a 2:1 randomization schema) with 32 intervention dyads and 16 control dyads (who will receive CIMT without structured carepartner involvement). CARE-CITE consists of online education modules for the carepartner to review in parallel to the 30-h CIMT that the stroke survivor receives. The intent of CARE-CITE is to enhance the home-based intervention of CIMT, by helping the carepartner support the therapy and create a therapeutic home environment encouraging practice of the weaker arm in functional tasks.DiscussionThe CARE-CITE study is testing the feasibility of a family-integrated rehabilitation approach applied in the home environment, and results will provide the foundation for larger clinical studies. The overall significance of this research plan is to increase the understanding and further development of interventions that may serve as models to promote family involvement in the rehabilitation process.Trial registrationClinicalTrials.gov, NCT02703532. Registered 9 March 2016.

Project description:BackgroundAlmost half of the stroke patients admitted to geriatric rehabilitation has persisting problems after discharge. Currently, there is no evidence based geriatric rehabilitation programme available for older stroke patients, combining inpatient rehabilitation with adequate ambulatory aftercare in the community. Therefore, we developed an integrated multidisciplinary rehabilitation programme that includes aftercare for older persons with stroke. We evaluated the effectiveness of this newly developed rehabilitation programme in comparison to usual care.MethodsA multicentre randomised controlled trial was conducted in eight geriatric rehabilitation stroke units and their collaborating partners in primary care. The study population involved stroke patients and their informal caregivers who were aged 65 or over, living in the community before admission to geriatric rehabilitation, and expected to be able to return home after discharge. The programme consisted of three modules: inpatient neurorehabilitation, home-based self-management training, and stroke education. For patients, daily activity (FAI) was assessed as primary outcome and functional dependence (Katz-15), perceived quality of life (SSQoL) and social participation (IPA) as secondary outcomes. Additionally, among informal caregivers perceived care burden (self-rated burden VAS), objective care burden (Erasmus iBMG), and quality of life (CarerQol), were assessed as secondary outcomes.ResultsIn total 190 patients and 172 informal caregivers were included. Mean age of the patients in the intervention group was 78.9 years (SD = 7.0) and in the usual care group 79.0 years (SD = 6.5). Significant favourable effects for the programme were observed for the subscale autonomy outdoors of the IPA (- 2.15, P = .047, and for the informal caregivers perceived care burden (1.23, P = .048. For the primary outcome daily activity and the other secondary outcomes, no significant effects were observed.ConclusionThe integrated multidisciplinary programme had no effect on daily activity of older stroke patients. However, patients participating in the programme had a higher level of perceived autonomy of outdoor activities and their informal caregivers perceived a lower care burden. The programme might be promising in providing adequate (after) care, although adaptation of the programme is recommended to increase its feasibility and improve its effects.Trial registrationCurrent Controlled Trials ISRCTN62286281 . Registered 19-3-2010.

Project description:BACKGROUND: A new caregiver burden questionnaire for heart failure (CBQ-HF v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts. Version 1.0 of the CBQ-HF included 41 items measuring the burden associated with caregiving in the following domains: physical, emotional/psychological, social, and impact on caregiver's life. Following initial development, the next stage was to evaluate caregivers' understanding of the questionnaire items and their conceptual relevance. METHODS: To evaluate the face and content validity of the new questionnaire, cognitive interviews were conducted with caregivers of heart failure patients. The cognitive interviews included a "think aloud" exercise as the patient completed the CBQ-HF, followed by more specific probing questions to better understand caregivers' understanding, interpretation and the relevance of the instructions, items, response scales and recall period. RESULTS: Eighteen caregivers of heart failure patients were recruited. The mean age of the caregivers was 50 years (SD?=?10.2). Eighty-three percent of caregivers were female and most commonly the patient was either a spouse (44%) or a parent (28%). Among the patients 55% were NYHA Class 2 and 45% were NYHA Class 3 or 4. The caregiver cognitive interviews demonstrated that the CBQ-HF was well understood, relevant and consistently interpreted. From the initial 41 item questionnaire, fifteen items were deleted due to conceptual overlap and/or item redundancy. The final 26-item CBQ-HF (v3.0) uses a 5-point Likert severity scale, assessing 4 domains of physical, emotional/psychological, social and lifestyle burdens using a 4-week recall period. CONCLUSIONS: The CBQ-HF (v3.0) is a comprehensive and relevant measure of subjective caregiver burden with strong content validity. This study has established that the CBQ-HF (v3.0) has strong face and content validity and should be valuable as an outcomes measure to help understand and monitor the relationship between patient heart failure severity and caregiver burden. A Translatability AssessmentSM of the measure has since been performed confirming the cultural appropriateness of the measure and psychometric validation is planned for the future to further explore the reliability, and validity of the new questionnaire in a larger caregiver sample.

Project description:IntroductionThe relevance of rehabilitation in progressive neurological disorders, such as Friedreich's Ataxia (FRDA), has yet to be convincingly proven. FRDA is characterized by ataxia, loss of gait, scoliosis, cardiomyopathy, dysarthria and dysphagia, with reduced life expectancy. The disease onset is usually in adolescence, leading to progressive disability. Omaveloxolone has been recently approved as the first pharmacological treatment for FRDA in adults and adolescents aged 16 years and older. Regarding non-pharmacological therapies, neurorehabilitation is a valuable aid in addressing the symptoms and in maintaining the residual functioning. We performed a prospective observational cohort study to evaluate the efficacy of inpatient rehabilitation (IR) for people with FRDA.MethodsA total of 42 individuals (29 adults and 13 children) with FRDA were recruited. There were 27 ambulant and 15 non-ambulant participants. The patients underwent IR of 3 and 4 weeks in children and adults, respectively. The IR treatment was designed to be applied within a multidisciplinary setting, so FRDA patients underwent, in addition to physiotherapy, also occupational therapy, practical manual activities and psychological support aiming to enhance transferable skills useful in the activities of daily living. The primary outcome was the Scale for the Assessment and Rating of Ataxia (SARA). Other measures were: Friedreich Ataxia Rating Scale (FARS) and Nine Hole Peg Test (NHPT). Furthermore, we used the 6 Minute Walk Test (6MWT), the Timed Up and Go (TUG) and the Berg Balance Scale (BBS) only on ambulant subjects. Outcomes were evaluated at baseline and at the end of the treatment.ResultsWe report that the IR significantly improves motor performance and ataxia symptoms in patients with FRDA. Our study shows significant functional improvement in all the outcome measures used, except for NHPT bilaterally. FARS and SARA scores post-IR are significatively reduced when compared (p < 0.001).DiscussionWe demonstrate that IR programs in FRDA can provide a meaningful clinical improvement in terms of outcome measures. These findings could be useful when approaching progressive neurological disorders.

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Content validity and satisfaction with a caregiver-integrated web-based rehabilitation intervention for persons with stroke.

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Content validity and satisfaction with a caregiver-integrated web-based rehabilitation intervention for persons with stroke.

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