An Intervention to Improve Physical Function and Caregiver Perceptions in Family Caregivers of Persons With Heart Failure.
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SUBMITTER: Gary R
PROVIDER: S-EPMC6026574 | biostudies-literature | 2020 Feb
REPOSITORIES: biostudies-literature
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An Intervention to Improve Physical Function and Caregiver Perceptions in Family Caregivers of Persons With Heart Failure.
Gary Rebecca R Dunbar Sandra B SB Higgins Melinda M Butts Brittany B Corwin Elizabeth E Hepburn Kenneth K Butler Javed J Miller Andrew H AH
Journal of applied gerontology : the official journal of the Southern Gerontological Society 20180118 2
<b>Objective:</b> This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. <b>Method:</b> Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handg ...[more]
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Project description:There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.
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Project description:Importance:Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective:To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. Design, Setting, and Participants:This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. Intervention:Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. Main Outcomes and Measures:The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. Results:A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d?=?-0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d?=?-0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d?=?0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). Conclusions and Relevance:This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. Trial Registration:ClinicalTrials.gov Identifier: NCT02505425.
| S-EPMC7154802 | biostudies-literature
Project description:BackgroundBetter caregiver contribution to self-care in heart failure is associated with better patient outcomes. However, caregiver contribution to self-care is also associated with high anxiety and depression, poor quality of life, and poor sleep in caregivers. It is still unclear whether interventions that encourage caregivers to contribute more to patient self-care might increase caregivers' anxiety and depression and decrease their quality of life and sleep.ObjectiveThe aim of this study was to assess the impact of a motivational interview intervention aimed at improving caregiver contribution to self-care in heart failure on caregivers' anxiety, depression, quality of life, and sleep.MethodsThis is a secondary outcome analysis of the MOTIVATE-HF trial. Patients with heart failure and their caregivers were randomized into arm 1 (motivational interview to patients), arm 2 (motivational interview to patients and caregivers), and arm 3 (standard care). Data were collected between June 2014 and October 2018. The article has been prepared following the Consolidated Standards of Reporting Trials checklist.ResultsA sample of 510 patient-caregiver dyads was enrolled. Over the year of the study, the levels of anxiety, depression, quality of life, and sleep in caregivers did not significantly change among the 3 arms.ConclusionsMotivational interview aimed at improving caregiver contribution to self-care does not seem to increase caregiver anxiety and depression, nor decrease their quality of life and sleep. Thus, such an intervention might be safely delivered to caregivers of patients with heart failure, although further studies are needed to confirm our findings.
| S-EPMC10259208 | biostudies-literature
Project description:Individuals with heart failure (HF) typically live in the community and are cared for at home by family caregivers. These caregivers often lack supportive services and the time to access those services when available. Technology can play a role in conveniently bringing needed support to these caregivers. The purpose of this article is to describe the implementation of a virtual health coaching intervention with caregivers of HF patients ("Virtual Caregiver Coach for You"-ViCCY). A randomized controlled trial is currently in progress to test the efficacy of the intervention to improve self-care. In this trial, 250 caregivers will be randomly assigned to receive health information via a tablet computer (hereafter, tablet) plus 10 live health coaching sessions delivered virtually (intervention group; n = 125) or health information via a tablet only (control group; n = 125). Each tablet has specific health information websites preloaded. To inform others embarking on similar technology projects, here we highlight the technology challenges encountered with the first 15 caregivers who received the ViCCY intervention and the solutions used to overcome those challenges. Several adaptations to the implementation of ViCCY were needed to address hardware, software, and network connectivity challenges. Even with a well-designed research implementation plan, it is important to re-examine strategies at every step to solve implementation barriers and maximize fidelity to the intervention. Researcher and interventionist flexibility in adapting to new strategies is essential when implementing a technology-based virtual health coaching intervention.
| S-EPMC8486377 | biostudies-literature
Project description:BackgroundHeart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them.ObjectiveThe aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF.MethodsA qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis.ResultsThe analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future.ConclusionsFamily members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.
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Project description:IntroductionSymptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver.Methods and analysisA feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers' contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers' burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes.Ethics and disseminationThe study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses.Trial registration numberISRCTN18151041.
| S-EPMC8317123 | biostudies-literature
Project description:BackgroundThe majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD.MethodsThis was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy.ResultsPrevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy.ConclusionCaregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD.Trial registrationISRCTN14565552 (retrospectively registered).
| S-EPMC11301828 | biostudies-literature
Project description:OBJECTIVES:To determine whether caregiver relationship and race modify associations between physical functioning of persons with dementia (PWD) and their caregiver's burden and general depressive symptoms. METHOD:We pooled data from four behavioral intervention trials (N = 1,211). Using latent growth modeling, we evaluated associations of PWD physical functioning with the level and rate of change in caregiver burden and caregivers' general depressive symptoms and stratified these associations by caregiver relationship and race. RESULTS:PWD were, on average, 81 years old (68% female) with mean follow-up of 0.5 years. More baseline PWD physical impairment was associated with less worsening in caregiver burden over time (? = -0.23, 95% CI: -0.29, -0.14), but this relationship was not modified by caregiver characteristics. More impaired baseline PWD physical functioning was not associated with changes in depressive symptoms (? = -0.08, 95% CI: -0.17, 0.00), but was associated with less worsening in depressive symptoms among spousal (? = -0.08, 95% CI: -0.17, 0.00) and non-white (? = -0.08, 95% CI: -0.17, 0.00) caregivers. CONCLUSIONS:Dementia caregivers may experience reduced caregiver-related burden because of adjustment to PWD functional status, while spousal and non-white caregivers may experience less depressive symptoms resultant of adjustment to functional status.
| S-EPMC6172154 | biostudies-literature
Project description:PurposeThis study examined secondary benefits of an individualized physical activity intervention on improving dementia family caregivers' subjective burden, depressive symptoms and positive affect.Design and methodsA community-based randomized controlled trial (RCT) was implemented with family caregivers of persons with dementia (N = 211) who received the Enhanced Physical Activity Intervention (EPAI: treatment intervention, n = 106) or the Caregiver Skill Building Intervention (CSBI: control intervention, n = 105). Interventions were delivered over 12 months, including a baseline home visit and regularly spaced telephone calls. Data were collected in person at baseline, 6 and 12-months; and telephonically at 3 and 9-months. The EPAI integrated physical activity and caregiving content while the CSBI focused only on caregiving content. Descriptive, bivariate and intention-to-treat analyses using generalized estimating equations (GEE) were performed to examine secondary benefits of the EPAI on family caregiver burden, depressive symptoms and positive affect.ResultsCompared to caregivers in the CSBI group, caregivers in the EPAI significantly increased their overall and total moderate physical activity and showed a positive interaction between the intervention and time for positive affect at both six (p = 0.01) and 12-months (p = 0.03). The EPAI was significantly associated with improving burden at 3 months (p = 0.03) but had no significant effect on depressive symptoms.ImplicationsCaregiver involvement in an individualized physical activity intervention was associated with increased overall and total moderate physical activity and improved positive affect from baseline to 12 months. Improved positive affect may help caregivers to feel better about themselves and their situation, and better enable them to continue providing care for their family member for a longer time at lower risk to their own mental health.
| S-EPMC5685520 | biostudies-literature