7 research outputs found

    Learning From Peers: A Survey of Perception and Utilization of Online Peer Support Among Informal Dementia Caregivers

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    Informal dementia caregivers are those who care for a person living with dementia (PLWD) without receiving payment (e.g., family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but they are limited in focusing merely on caregivers who are already online users. In this paper, we designed and administered a survey to investigate the perception and utilization of online peer support from 140 informal dementia caregivers (with 100 online-community caregivers). Our findings show that the behavior to access any online community is only significantly associated with their belief in the value of online peer support (p = 0.006). Moreover, 33 (83%) of the 40 non-online-community caregivers had a belief score above 24, a score assigned when a neutral option is selected for each belief question. The reasons most articulated for not accessing any online community were no time to do so (14; 10%), and insufficient online information searching skills (9; 6%). Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or searching skills

    “Rough Day … Need a Hug”: Learning Challenges and Experiences of the Alzheimer’s Disease and Related Dementia Caregivers on Reddit

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    Alzheimer’s disease and related dementia (ADRD) is a collection of disorders involving mental deterioration, which is often quite distressing for the individuals and those caring for them. Online social media platforms have become popular environments for people to share their ADRD caring challenges and experiences. Despite encouraging findings in the literature regarding online support for ADRD caregivers, studies to date have focused only on a single online community about ADRD, which leads to an incomplete picture of the needs of ADRD caregivers. Additionally, the large volume of data from online communities makes it challenging for both researchers and caregivers to efficiently discover discussions about ADRD care. In this paper, we focus on Reddit, an online rating and discussion platform that consists of many communities, or subreddits, and aim to analyze the topic difference regarding ADRD care between ADRD and non-ADRD subreddits. To do so, we first develop a two-stage classification framework to extract posts about ADRD care from the entire Reddit. Then, we apply structured topic modeling to investigate what has been discussed on ADRD care and how such discussions are prevalent in different types of subreddits. Our results show that non-ADRD subreddits contribute 68.5% of submissions of ADRD care, more than twice as many as ADRD subreddits. Moreover, non-ADRD subreddits are more likely to disclose legal and financial issues, negative relationships and mental health, while ADRD subreddits are more likely to talk about memory loss, sleeping and diet issues, the disease and clinical visits. Our findings suggest that research in this area should look into discussions beyond ADRD communities to gain a comprehensive understanding of ADRD caring experiences and challenges

    Selective inversion recovery quantitative magnetization transfer imaging: Toward a 3 T clinical application in multiple sclerosis.

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    BACKGROUND: Assessing the degree of myelin injury in patients with multiple sclerosis (MS) is challenging due to the lack of magnetic resonance imaging (MRI) methods specific to myelin quantity. By measuring distinct tissue parameters from a two-pool model of the magnetization transfer (MT) effect, quantitative magnetization transfer (qMT) may yield these indices. However, due to long scan times, qMT has not been translated clinically. OBJECTIVES: We aim to assess the clinical feasibility of a recently optimized selective inversion recovery (SIR) qMT and to test the hypothesis that SIR-qMT-derived metrics are informative of radiological and clinical disease-related changes in MS. METHODS: A total of 18 MS patients and 9 age- and sex-matched healthy controls (HCs) underwent a 3.0 Tesla (3 T) brain MRI, including clinical scans and an optimized SIR-qMT protocol. Four subjects were re-scanned at a 2-week interval to determine inter-scan variability. RESULTS: SIR-qMT measures differed between lesional and non-lesional tissue ( CONCLUSION: SIR-qMT at 3 T is clinically feasible and predicts both radiological and clinical disease severity in MS

    A Blueprint for the Conduct of Large, Multisite Trials in Telemedicine

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    Recent literature supports the efficacy and efficiency of telemedicine in improving various health outcomes despite the wide variability in results. Understanding site-specific issues in the implementation of telemedicine trials for broader replication and generalizability of results is needed. Lessons can be learned from existing trials, and a blueprint can guide researchers to conduct these challenging studies using telemedicine more efficiently and effectively. This viewpoint presents relevant challenges and solutions for conducting multisite telemedicine trials using 7 ongoing and completed studies funded by the Patient-Centered Outcomes Research Institute portfolio of large multisite trials to highlight the challenges in implementing telemedicine trials. Critical issues of ensuring leadership and buy-in, appropriate funding, and diverse and representative trials are identified and described, as well as challenges related to clinical, informatics, regulatory, legal, quality, and billing. The lessons learned from these studies were used to create a blueprint of key aspects to consider for the design and implementation of multisite telemedicine trials
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