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| Name | Class |
|---|---|
| Cambia Health Foundation | OTHER |
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The purpose of this study is to test a peer support intervention for caregivers who are caring for a loved one living with dementia.
African Americans are twice as likely to develop Alzheimer's disease or a related form of dementia (ADRD) than their White counterparts. These individuals are, however, more often diagnosed later, creating additional physical, spiritual, psychosocial challenges for both the person living with ADRD and their family caregivers. African American ADRD caregivers are therefore at greater risk for adverse physiological and psychological health effects of caregiving, including significant burden and stress. Evidence suggests that peer to peer support using storytelling may be effective in assisting ADRD caregivers with surrogate healthcare decision making, an important aspect of palliative care. Access to and use of palliative care, a recognized approach to serious illness care symptom management, among African Americans are low. The impact of this healthcare inequity further reduces the quality of life for African American ADRD caregivers and subsequently their care recipients. Prior approaches to serious illness care have failed to address the needs of African Americans living with ADRD from a palliative care perspective. This inability to meet their needs leads to increased unmet caregiver needs. Peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision making burden within cultural groups such as African Americans through cultural tailoring by promoting oral traditions, personal contact, and storytelling. Our current study includes perspectives of lower socioeconomic status African American ADRD caregivers who have expressed the need for person-centered, non-judgmental, on-demand, culturally congruent caregiving support for advance care planning and healthcare decision making. Simultaneously, former caregivers retrospectively described perceived benefits of peer support while caregiving and their willingness to serve as peer mentors to current caregivers. Additional data from healthcare provider and community stakeholders support the need and potential benefits of peer support for ADRD caregivers. Based on these preliminary findings, there is an urgent need and exciting opportunity to address the unmet palliative care needs of current caregivers through peer support. For this innovative project, investigators will use the experiential expertise of former caregivers to help current caregivers with advance care planning and healthcare decision making. The purpose of this project is to use a stakeholder-informed approach in further developing and pilot testing the co-created Peer Support for Caregivers of African Americans Living with Alzheimer's Disease and Related Dementias (Pair2Care), a culturally sensitive caregiver peer support intervention.
Aim: Conduct feasibility and acceptability testing of Pair 2 Care in current and trained former African American ADRD family caregiver peers paired based on congruent identity traits (e.g., relationship to care recipient, gender identity, etc.). Investigators will determine if Pair2Care is feasible and acceptable by evaluating satisfaction and appropriateness of the intervention for broader dissemination.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Peer Support | Experimental | Former caregivers will be paired with a current caregivers |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Peer Support | Behavioral | Former caregivers will be paired with a current caregiver based on a similar personal attribute (e.g., relationship to care recipient). Each pair will complete at least five virtual face-to-face (video) interactions and at least 10 other interactions either via phone call, email, or text messaging over the 6-month time period. |
| Measure | Description | Time Frame |
|---|---|---|
| Medical Outcomes Study Social Support Survey (MOS SSS) | This instrument contains 19 items that comprise 4 subscales: Emotional/Informational Support, Tangible Support, Affectionate Support, and Positive Social Interaction. Each item is scored on a 5 point Likert scale of 1 ("none of the time") to 5 ("all the time"), with higher scores indicating more social support. Total and subscale scores are in a range of 1-5 calculated by taking the mean across items. | Baseline and 6 months post baseline |
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Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Ohio State University College of Nursing | Columbus | Ohio | 43210 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 41403114 | Derived | Moss KO, Tan A, Brody AA, Bullock K, Wright KD, Johnson K, Happ MB. A Peer Support Intervention for Black Family Caregivers of Persons Living With Dementia: A Feasibility Study. J Am Geriatr Soc. 2026 Feb;74(2):407-417. doi: 10.1111/jgs.70241. Epub 2025 Dec 16. |
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| ID | Title | Description |
|---|---|---|
| FG000 | Peer Support | Former caregivers will be paired with a current caregivers Peer Support: Former caregivers will be paired with a current caregiver based on a similar personal attribute (e.g., relationship to care recipient). Each pair will complete at least five virtual face-to-face (video) interactions and at least 10 other interactions either via phone call, email, or text messaging over the 6-month time period. |
| Title | Milestones | Reasons Not Completed | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
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| ID | Title | Description |
|---|---|---|
| BG000 | Peer Support | Former caregivers will be paired with a current caregivers Peer Support: Former caregivers will be paired with a current caregiver based on a similar personal attribute (e.g., relationship to care recipient). Each pair will complete at least five virtual face-to-face (video) interactions and at least 10 other interactions either via phone call, email, or text messaging over the 6-month time period. |
| Units | Counts |
|---|---|
| Participants |
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| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Customized | Mean |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | Medical Outcomes Study Social Support Survey (MOS SSS) | This instrument contains 19 items that comprise 4 subscales: Emotional/Informational Support, Tangible Support, Affectionate Support, and Positive Social Interaction. Each item is scored on a 5 point Likert scale of 1 ("none of the time") to 5 ("all the time"), with higher scores indicating more social support. Total and subscale scores are in a range of 1-5 calculated by taking the mean across items. | 1 participant was not able to complete the intervention due to the death of their spouse | Posted | Mean | Standard Deviation | score on a scale | Baseline and 6 months post baseline |
|
Adverse event data were collected over the 6 month study period
Any untoward or unfavorable medical occurrence in a participant, including any abnormal sign (for example, abnormal physical exam or laboratory finding), symptom, or disease, temporally associated with the participant's participation in the research, whether or not considered related to the participant's participation in the research.
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | Peer Support | Former caregivers will be paired with a current caregivers Peer Support: Former caregivers will be paired with a current caregiver based on a similar personal attribute (e.g., relationship to care recipient). Each pair will complete at least five virtual face-to-face (video) interactions and at least 10 other interactions either via phone call, email, or text messaging over the 6-month time period. |
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| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Karen O. Moss | Ohio State University | (614) 688-3100 | Moss.391@osu.edu |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Jan 15, 2024 | Dec 17, 2024 | Prot_SAP_000.pdf |
| ICF | No | No | Yes | Informed Consent Form | Aug 2, 2023 | Dec 17, 2024 | ICF_001.pdf |
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| ID | Term |
|---|---|
| D003704 | Dementia |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
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A model to explain factors impacting advance care planning among African Americans
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| years |
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| Sex: Female, Male | Count of Participants | Participants |
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| Ethnicity (NIH/OMB) | Count of Participants | Participants |
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| Race (NIH/OMB) | Count of Participants | Participants |
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| Region of Enrollment | Number | participants |
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| Marital Status | Count of Participants | Participants |
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| Employment | Count of Participants | Participants |
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| Relationship to loved one with dementia | Count of Participants | Participants |
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| Years as caregiver to the loved one with dementia | Mean | Standard Deviation | years |
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| 0 |
| 15 |
| 0 |
| 15 |
| 0 |
| 15 |
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| D001523 | Mental Disorders |