Dataset Information

Delivering a holistic hospital-to-home framework to support family caregivers of persons with dementia: Protocol for a feasibility study.

ABSTRACT:

Aim

To evaluate the feasibility of the Carer Matters holistic hospital-to-home framework for family caregivers of people with dementia.

Background

Family 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.

Methods

A 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.

Discussion

The 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.

Impact

These 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.

SUBMITTER: Chan EY

PROVIDER: S-EPMC9314660 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Delivering a holistic hospital-to-home framework to support family caregivers of persons with dementia: Protocol for a feasibility study.

Chan Ee-Yuee EY Glass George Frederick GF

Journal of advanced nursing 20220314 5

<h4>Aim</h4>To evaluate the feasibility of the Carer Matters holistic hospital-to-home framework for family caregivers of people with dementia.<h4>Background</h4>Family 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 caregive ...[more]

PMID: 35285537

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Project description:BackgroundAmong older adults, food insecurity is associated with poor health status and health outcomes; people living with dementia (PLWD) are at increased risk for insecurity. Approaches to addressing food insecurity among homebound older adults include two modes of home-delivered meals: (1) meals delivered daily to participants' homes by a volunteer or paid driver who socializes with the client or (2) frozen meals that are mailed to participants' homes. Research has not examined benefits of these meals for PLWD or their caregivers nor compared the effectiveness of these two approaches in reducing food insecurity. The objective of this study was to test the processes for recruiting and engaging in qualitative research with PLWD and caregivers in an effort to understand the context, implementation, and mechanisms of impact by which relationships between meal delivery and outcomes may be achieved in preparation for a larger, follow-on study.MethodsThis is a qualitative sub-study of a pilot, multisite, two-arm pragmatic feasibility trial comparing the effect of two modes of meal delivery on nursing home placement among 243 PLWD. In this sub-study, we tested recruitment and enrollment procedures and piloted interview guides among a subset of participants and caregivers.ResultsWe recruited and conducted interviews with nine PLWD and seven caregivers. In testing the informed consent process, all participants were able to consent to be interviewed, and PLWD all demonstrated capacity to consent. We successfully used a cognitive screener to obtain scores of cognitive impairment for PLWD and observed scores indicating a broad range of function. Our interview guides successfully resulted in information about the context, implementation, and mechanisms of impact for meal delivery during the pilot.ConclusionsIn addition to establishing feasibility for the future trial, the substantive findings identified through the qualitative interviews provide an initial understanding of the contextual factors for meal delivery and the potential mechanisms of impact across meal delivery types that warrant further examination in a full-scale trial. Findings from our study provide crucial pilot data to support a follow-on trial to understand how to address food insecurity among PLWD.Name of the registryClinicalTrials.gov TRIAL REGISTRATION: NCT04850781 DATE OF REGISTRATION: April 20, 2021, retrospectively registered https://clinicaltrials.gov/ct2/show/NCT04850781.

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:BackgroundProlonged caregiving of an older adult can cause family caregivers to be overwhelmed, potentially affecting the well-being of both the caregivers and their care-recipients. Carer Matters is a holistic hospital-to-home programme, centred on caregivers' needs as their care-recipients transit from hospital to home. The programme was piloted to support caregivers through caregivers needs assessment, tailored resources, tele-support, training courses, and community support network. This study aimed to examine the feasibility of Carer Matters in a tertiary hospital in Singapore.MethodsThis feasibility study was conducted on the pilot implementation from January to December 2021, during the Covid-19 pandemic. It adopted the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. The study highlighted quantitative data collected from key process indicators, such as number of caregivers screened, assessed on their needs and provided with assistance. Additionally, qualitative data was collected from in-depth interviews with 51 stakeholders involved in the implementation to examine their perspectives and experiences. These included family caregivers, clinician caregiver support nurses, hospital leaders and community partners.ResultsDuring the pilot, 550 caregivers were enrolled. All caregivers received educational resources when they completed the needs assessment, while 69 of them who reported high burden were given tele-support and 252 attended our caregiver training courses. Despite initial recruitment challenges and obstacles to adoption, stakeholders interviewed found Carer Matters to be effective in providing caregivers with emotional support, knowledge and skills that improved their caregiving abilities, and reduced their sense of isolation and caregiving stress. Among caregivers, the training courses were effective with majority of caregivers agreeing that the courses addressed their needs (99%) and improved their knowledge of the relevant disease conditions (97%). Programme maintenance considered among stakeholders included strategies such as multipronged approach in recruiting caregivers and inviting caregiver advocates to share their experiences.ConclusionThis feasibility study highlights that Carer Matters is a valuable component to the ecosystem of support for family caregivers and their care recipients. Carer Matters extends the current patient-centric care model to a more holistic post-discharge continuity of care for both caregivers and their care-recipients, improving and maintaining their overall well-being to better allow transition from hospital-to home.Trial registrationFeasibility Study of Project Carer Matters for Family Caregivers of Persons with Dementia (NCT number: NCT05205135 ).

Project description:BackgroundAs the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes.MethodsQualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention.ResultsWe found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes.ConclusionWe found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

Dataset Information

Delivering a holistic hospital-to-home framework to support family caregivers of persons with dementia: Protocol for a feasibility study.

Aim

Background

Methods

Discussion

Impact

Publications

Delivering a holistic hospital-to-home framework to support family caregivers of persons with dementia: Protocol for a feasibility study.

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