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Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study.

ABSTRACT: BACKGROUND:Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. OBJECTIVE:This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. METHODS:This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. RESULTS:This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. CONCLUSIONS:We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/13280.

SUBMITTER: Guisado-Fernandez E

PROVIDER: S-EPMC6786855 | biostudies-other | 2019 Aug

REPOSITORIES: biostudies-other

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Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study.

Guisado-Fernandez Estefania E Caulfield Brian B Silva Paula Alexandra PA Mackey Laura L Singleton David D Leahy Daniel D Dossot Sébastien S Power Dermot D O'Shea Diarmuid D Blake Catherine C

JMIR research protocols 20190828 8

<h4>Background</h4>Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health p ...[more]

PMID: 31464187

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Project description:BackgroundEstimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers.ObjectiveThe aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design.MethodsA moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation.ResultsQuantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors.ConclusionsCtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.

Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

Project description:BackgroundA strategy for reducing adverse pregnancy outcomes is the expanded implementation of maternity waiting homes (MWHs). We assessed factors influencing MWH use, as well as the association between MWH stay and obstetric outcomes in a hospital in rural Ethiopia.MethodsData from medical records of the Glenn C. Olson Memorial Primary Hospital obstetric ward were cross matched with records from the affiliated MWH between 1 and 2011 to 31 March 2014. Poisson regression with robust variance was conducted to estimate the relative risk (RR) of childbirth complications associated with MWH use vs. non-use. Five key informant interviews of a convenience sample of three MWH staff and two users were conducted and a thematic analysis performed of social, cultural, and economic factors underlying MWH use.ResultsDuring the study period, 489 women gave birth at the hospital, 93 of whom were MWH users. Common reasons for using the MWH were post-term status, previous caesarean section/myomectomy, malposition/malpresentation, and low-lying placenta, placenta previa, or antepartum hemorrhage, and hypertension or preeclampsia. MWH users were more likely than non-users to have had a previous caesarean Sec. (15.1 % vs. 5.3 %, p < 0.001) and to be post-term (21.5 % vs. 3.8 %, p < 0.001). MWH users were also more likely to undergo a caesarean Sec. (51.0 % vs. 35.4 %, p < 0.05) and less likely (p < 0.05) to have a spontaneous vaginal delivery (49.0 % vs. 63.6 %), obstructed labor (6.5 % vs. 14.4 %) or stillbirth (1.1 % vs. 8.6 %). MWH use (N = 93) was associated with a 77 % (adjusted RR = 0.23, 95 % Confidence Interval (CI) 0.12-0.46, p < 0.001) lower risk of childbirth complications, a 94 % (adjusted RR = 0.06, 95 % CI 0.01-0.43, p = 0.005) lower risk of fetal and newborn complications, and a 73 % (adjusted RR = 0.27, 95 % CI 0.13-0.56, p < 0.001) lower risk of maternal complications compared to MWH non-users (N = 396). Birth weight [median 3.5 kg (interquartile range 3.0-3.8) vs. 3.2 kg (2.8-3.5), p < 0.001] and 5-min Apgar scores (adjusted difference = 0.25, 95 % CI 0.06-0.44, p < 0.001) were also higher in offspring of MWH users. Opportunity costs due to missed work and need to arrange for care of children at home, long travel times, and lack of entertainment were suggested as key barriers to MWH utilization.ConclusionsThis observational, non-randomized study suggests that MWH usage was associated with significantly improved childbirth outcomes. Increasing facility quality, expanding services, and providing educational opportunities should be considered to increase MWH use.

Project description:AimTo evaluate the feasibility of the Carer Matters holistic hospital-to-home framework for family caregivers of people with dementia.BackgroundFamily caregivers of persons with dementia face a unique blend of stressors, from behavioural management to navigating the healthcare system. It is important to provide support and assistance to help caregivers cope to enable a sustained capacity for caregiving. This led to our establishment of Carer Matters, the first holistic caregiver-centric hospital-to-home framework of support for caregivers of persons with dementia in Singapore.MethodsA multimethod study design will be used. We will assess the programme's feasibility and effectiveness using a Theory of Change approach, with findings synthesized using the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework. Our study will involve six inpatient wards of a 1700-bedded acute care hospital over 12 months. Qualitative data will be obtained from interviews of stakeholders-caregivers, healthcare professionals, hospital leaders and community leaders. Quantitative data will be collected from programme logs, surveys and evaluation forms that capture self-reported levels of mastery, anxiety, burden, and depression. Funding has been approved by the Geriatric Education and Research Institute (GERI) Intramural Project Grant (GERI Ref: GERI1626) on May 2020 for this study (£103,659), to be conducted from December 2020 to June 2022.DiscussionThe stresses faced by caregivers of persons with dementia are wide and complex, necessitating a multi-faceted caregiver-oriented solution to provide sustained support, empower better management and continued capacity to care. Our study would provide insights on the feasibility and effectiveness of a caregiver-centric support programme stretching from the hospital into the community.ImpactThese findings will provide a blueprint on how to implement a hospital-to-home patient-caregiver framework and provide policymakers, clinicians, and advocacy groups with critical insights on the potential patient-caregiver-healthcare system outcomes that can be derived.

Project description:BackgroundPeople living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources.ObjectiveThis study aims to evaluate CareVirtue's feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use?MethodsWe conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews.ResultsCare networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating "good" usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting <US $100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=-0.33, 95% CI -0.55 to -0.06).ConclusionsThis study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue's effectiveness in improving caregiver outcomes.

Project description:BackgroundAlzheimer disease (AD) and AD-related dementia are prevalent concerns for aging populations. With a growing older adult population living in the United States, the number of people living with dementia is expected to grow, posing significant challenges for informal caregivers. The mental and physical burdens associated with caregiving highlight the importance of developing novel and effective resources to support caregivers. However, technology solutions designed to address their needs often face low adoption rates due to usability issues and a lack of contextual relevance. This study focuses on developing a web-based platform providing financial and legal planning information and education for dementia caregivers and evaluating the platform's usability and adoptability.ObjectiveThe goal of this project is to create a web-based platform that connects caregivers with personalized and easily accessible resources. This project involves industrial, academic, and community partners and focuses on two primary aims: (1) developing a digital platform using a Dementia Care Personalization Algorithm and assessing feasibility in a pilot group of caregivers, and (2) evaluating the acceptability and usability of the digital platform across different racial or ethnic populations. This work will aid in the development of technology-based interventions to reduce caregiver burden.MethodsThe phase I study follows an iterative Design Thinking approach, involving at least 25 dementia caregivers as a user feedback panel to assess the platform's functionality, aesthetics, information, and overall quality using the adapted Mobile Application Rating Scale. Phase II is a usability study with 300 dementia caregivers in Texas (100 African American, 100 Hispanic or Latinx, and 100 non-Hispanic White). Participants will use the digital platform for about 4 weeks and evaluate its usefulness and ease of use through the Technology Acceptance Survey.ResultsThe study received funding from the National Institute on Aging on September 3, 2021. Ethical approval for phase I was obtained from the Texas A&M University Institutional Review Board on December 8, 2021, with data collection starting on January 1, 2022, and concluding on May 31, 2022. Phase I results were published on September 5, 2023, and April 17, 2024, respectively. On June 21, 2023, ethical approval for human subjects for phase II was granted, and participant recruitment began on July 1, 2023.ConclusionsUpon completing these aims, we expect to deliver a widely accessible digital platform tailored to assist dementia caregivers with financial and legal challenges by connecting them to personalized, contextually relevant information and resources in Texas. If successful, we plan to work with caregiving organizations to scale and sustain the platform, addressing the needs of the growing population living with dementia.International registered report identifier (irrid)DERR1-10.2196/64127.

Dataset Information

Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study.

Publications

Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study.

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