CommunityRx: Optimizing a Community Resource Referral Intervention for Minority Dementia Caregivers.
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SUBMITTER: Abramsohn EM
PROVIDER: S-EPMC8501155 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundConnecting patients to community-based resources is now a cornerstone of modern healthcare that supports self-management of health. The mechanisms that link resource information to behavior change, however, remain poorly understood.ObjectiveTo evaluate the impact of CommunityRx, an automated, low-intensity resource referral intervention, on patients' knowledge, beliefs, and use of community resources.DesignReal-world controlled clinical trial at an urban academic medical center in 2015-2016; participants were assigned by alternating week to receive the CommunityRx intervention or usual care. Surveys were administered at baseline, 1 week, 1 month, and 3 months.ParticipantsPublicly insured adults, ages 45-74 years.InterventionCommunityRx generated an automated, personalized list of resources, known as HealtheRx, near each participant's home using condition-specific, evidence-based algorithms. Algorithms used patient demographic and health characteristics documented in the electronic health record to identify relevant resources from a comprehensive, regularly updated database of health-related resources in the study area.Main measuresUsing intent-to-treat analysis, we examined the impact of HealtheRx referrals on (1) knowledge of the most commonly referred resource types, including healthy eating classes, individual counseling, mortgage assistance, smoking cessation, stress management, and weight loss classes or groups, and (2) beliefs about having resources in the community to manage health.Key resultsIn a real-world controlled trial of 374 adults, intervention recipients improved knowledge (AOR?=?2.15; 95% CI, 1.29-3.58) and beliefs (AOR?=?1.68; 95% CI, 1.07-2.64) about common resources in the community to manage health, specifically gaining knowledge about smoking cessation (AOR?=?2.76; 95% CI, 1.07-7.12) and weight loss resources (AOR?=?2.26; 95% CI 1.05-4.84). Positive changes in both knowledge and beliefs about community resources were associated with higher resource use (P?=?0.02).ConclusionsIn a middle-age and older population with high morbidity, a low-intensity health IT intervention to deliver resource referrals promoted behavior change by increasing knowledge and positive beliefs about community resources for self-management of health.Nih trial registryNCT02435511.
| S-EPMC7080911 | biostudies-literature
Project description:CommunityRx (CRx), an information technology intervention, provides patients with a personalized list of healthful community resources (HealtheRx). In repeated clinical studies, nearly half of those who received clinical "doses" of the HealtheRx shared their information with others ("social doses"). Clinical trial design cannot fully capture the impact of information diffusion, which can act as a force multiplier for the intervention. Furthermore, experimentation is needed to understand how intervention delivery can optimize social spread under varying circumstances. To study information diffusion from CRx under varying conditions, we built an agent-based model (ABM). This study describes the model building process and illustrates how an ABM provides insight about information diffusion through in silico experimentation. To build the ABM, we constructed a synthetic population ("agents") using publicly-available data sources. Using clinical trial data, we developed empirically-informed processes simulating agent activities, resource knowledge evolution and information sharing. Using RepastHPC and chiSIM software, we replicated the intervention in silico, simulated information diffusion processes, and generated emergent information diffusion networks. The CRx ABM was calibrated using empirical data to replicate the CRx intervention in silico. We used the ABM to quantify information spread via social versus clinical dosing then conducted information diffusion experiments, comparing the social dosing effect of the intervention when delivered by physicians, nurses or clinical clerks. The synthetic population (N = 802,191) exhibited diverse behavioral characteristics, including activity and knowledge evolution patterns. In silico delivery of the intervention was replicated with high fidelity. Large-scale information diffusion networks emerged among agents exchanging resource information. Varying the propensity for information exchange resulted in networks with different topological characteristics. Community resource information spread via social dosing was nearly 4 fold that from clinical dosing alone and did not vary by delivery mode. This study, using CRx as an example, demonstrates the process of building and experimenting with an ABM to study information diffusion from, and the population-level impact of, a clinical information-based intervention. While the focus of the CRx ABM is to recreate the CRx intervention in silico, the general process of model building, and computational experimentation presented is generalizable to other large-scale ABMs of information diffusion.
| S-EPMC8568099 | biostudies-literature
Project description:BackgroundThe focus of care has shifted from institutional care to home care. Family caregivers provide the majority of home care that allows an opportunity for their care recipients to live at home and avoid costly institutional care. The aim of this study is to describe the nutritional status, oral health, and quality of life of family caregivers over the age of 65 and their care recipients, and to evaluate the impact of individually tailored diet and oral health advice to their nutritional status and oral health.Methods/designAltogether, 250 family caregivers aged 65 or over, and their care recipients are studied in this prospective randomized population-based multidisciplinary 6-month intervention study. Participants are randomly allocated to the intervention groups or the control group. Data collection is performed at three time-points: at baseline and 6 months and after a 6-month follow-up at 12 months. Caregivers' and their care recipients' nutritional and oral health status as a primary outcome, and functional ability, cognitive status, quality of life, depression symptoms, sense of coherence, morbidity, and medication of family caregivers as secondary outcomes will be measured using validated self-administered questionnaires and clinical examinations.DiscussionTo our knowledge, this is the first experiment to determine whether caregivers and their care recipients benefit from individual nutritional intervention and oral health intervention in terms of nutrition status, oral health status, and quality of life.Trial registrationClinicalTrials.gov NCT04003493 . Registered on June 28, 2019.
| S-EPMC8444374 | biostudies-literature
Project description:PurposeThis study examined the effectiveness of Caregivers Optimizing Achievement of Children With Hearing Loss (COACH), an intervention in which parents were taught naturalistic interaction strategies that addressed the unique linguistic input needs of their young children with hearing loss.MethodA single-subject multiple-baseline across-behaviors design was used with four caregiver-child dyads to determine the effects of COACH training on caregivers' use of the COACH language facilitation strategies and on their children's language abilities.ResultsA functional relation was demonstrated between teaching of strategies and caregivers' use of the strategies across three dyads with slower, consistent changes observed in a fourth dyad. Improvements in children's use of target-level language were observed for children in three dyads.ConclusionsCaregivers were able to implement COACH language facilitation strategies, although the pace of caregivers' learning differed across dyads. Caregivers reported high satisfaction with participating in the intervention. Future research using a randomized design and a longer intervention condition is needed for a more complete assessment of the effects of the intervention on children's language abilities.Supplemental materialhttps://doi.org/10.23641/asha.22290082.
| S-EPMC10473369 | biostudies-literature
Project description:To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers.Randomized, controlled trial.Academic medical center.Dyads (n = 250) of distressed informal dementia caregivers and care recipients.Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies.Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions.Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group.An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use.
| S-EPMC5510656 | biostudies-literature
Project description:Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer's or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers' knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers' heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up.
| S-EPMC5546622 | biostudies-other
Project description:Background CommunityRx is an evidence-based social care intervention delivered to family and friend caregivers ("caregivers") at the point of healthcare to address health-related social risks (HRSRs). CommunityRx-Hunger is a double-blind randomized controlled trial (RCT) that enrolls caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT that enrolls caregivers of community-residing people with dementia. Clinical trials that enroll caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify and track caregivers. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the CommunityRx protocols from in-person to remote operations. This study describes the novel methods used to iterate existing RCT protocols and factors contributing to their successful iteration. Methods CommunityRx uses individual-level data to generate personalized community resource referrals for basic, health and caregiving needs. Our research program uses an asset-based, community-engaged approach including study-specific community advisory boards (CABs). In early 2020, both RCT protocols were pre-tested in-person. In March 2020, when pandemic conditions prohibited enrollment during clinical encounters, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Results Enabled by engaged CABs and ARCTICS, both RCTs quickly adapted to remote operations. Designed before the pandemic, we had planned to launch both trials by March 2020 and complete enrollment by December 2021. The pandemic postponed launch until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in 12 months than originally projected in-person. Conclusions Our asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration to remote trial operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research. Trial Status Both studies are registered on ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999); CommunityRx for Caregivers (NCT04146545); My Diabetes My Community (NCT04970810).
| S-EPMC10002827 | biostudies-literature
Project description:BackgroundCommunityRx is an evidence-based social care intervention delivered to family and friend caregivers ("caregivers") at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago's South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers.Methods and findingsCommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment.DiscussionOur asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research.Trial registrationClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).
| S-EPMC10624358 | biostudies-literature
Project description:BackgroundFamily caregiver interventions are essential to support dementia caregiving. However, such interventions are typically complex and consist of multiple components. Existing evidence rarely delineates the effectiveness and interactions between individual components. To optimise intervention, we adopt the multiphase optimisation strategy (MOST) to test the implementation fidelity and determine the effect of each component and the interactions between each component and the corresponding outcome.MethodsA prospective, assessor-blinded, randomised clinical trial with fractional factorial design using the MOST principle. Two hundred fifty family dementia caregivers will be randomised to one of 16 experimental conditions in a fractional factorial design involving six intervention components: (1) dementia and caregiving education; (2) self-care skills; (3) behavioural symptom management; (4) behavioural activation; (5) modified mindfulness-based cognitive therapy; and (6) support group. The first one is the core component, and the five remaining will be examined. Physical health, caregiver burden, stress, psychological well-being, anxiety and depressive symptoms, and social support will be assessed over the 12-month study period. Following the intention-to-treat principle, linear mixed models and regression analyses will be used to examine the specific effect of the five components and their two-way interactions to propose the most effective combination.DiscussionThis is the first study adopting the multiphase optimisation strategy to identify the most active and engaging components of a psychological intervention for caregivers of patients with dementia. In view that dementia caregiver interventions are increasingly diversified and complex, such knowledge is important to maximise the intervention efficacy and allow the intervention to be implemented within an efficient timeframe and dosage. The optimisation of caregiver support interventions is critical to enhance the health outcomes of caregivers and care recipients, thereby, delaying possible institutionalisation and reducing the costs of long-term dementia care.Trial registrationThis study was retrospectively registered in the WHO Primary Registry - Chinese Clinical Trials Registry (ChiCTR2300071235). (Protocol date 30/10/2020; version identifier 2020-2021-0045). Registered on 9 May, 2023.Reporting methodSPIRIT guideline was followed.Patient or public contributionNo patient or public involvement.
| S-EPMC10696816 | biostudies-literature
Project description:BackgroundMany individuals living with dementia want to live in their own homes for as long as possible. To do so, they frequently require assistance with activities of daily living, which is often provided by friends and relatives acting as informal care partners. In Canada, many informal care partners are currently overworked and overwhelmed. Although community-based dementia-inclusive resources are available to support them, care partners often struggle to find them. Dementia613.ca was created to make the process of finding community dementia-inclusive resources simpler and more straightforward by bringing them together in one eHealth website.ObjectiveThe objective of our study was to determine if dementia613.ca is meeting the goal of connecting care partners and persons living with dementia to dementia-inclusive resources in their community.MethodsA review and assessment of the website was conducted using 3 evaluation methods: web analytics, questionnaires, and task analysis. Google Analytics was used to collect data related to website use over a 9-month period. Data on site content and user characteristics were collected. Furthermore, 2 web-based self-administered questionnaires were developed: one intended for care partners and persons living with dementia, and the other intended for businesses and organizations interested in serving persons living with dementia. Both gathered data on user characteristics and included standard questions used in website evaluations. Responses were collected over a 6-month period. Scenarios, tasks, and questions were developed for the moderated, remote, and task-analysis sessions. These tasks and questions determined how effectively persons living with dementia and their care partners can use dementia613.ca. Overall, 5 sessions were held with persons experiencing moderate cognitive decline and with care partners of persons living with dementia.ResultsThis evaluation showed that the idea behind dementia613.ca is strong and appeals to persons living with dementia, their care partners, and the businesses and organizations serving this market. Participants indicated that it is a useful community resource that meets a previously unfulfilled need in the area, and highlighted the benefits of bringing community resources together on 1 website. In our questionnaire, >60% (19/29, 66%) of people living with dementia and their care partners and 70% (7/10) of businesses and organizations agreed that the website made it easier to find relevant dementia-inclusive resources. There is room for improvement; participants indicated that the navigation and search features could be further developed.ConclusionsWe believe that the dementia613.ca model could be used to inspire and guide the creation of dementia resource websites in other regions in Ontario and beyond. The framework behind it is generalizable and could be replicated to help care partners and persons living with dementia find local resources more easily.
| S-EPMC10160937 | biostudies-literature