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| Name | Class |
|---|---|
| AARP Foundation | OTHER |
| University of Southern California | OTHER |
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The purpose of this study is to determine how feasible it is to deliver an online course to reduce out-of-pocket costs of caregiving and reduce financial stress among Latino family caregivers to a family member living with dementia. The investigators hope that that the results of this study will help to reduce high these out-of-pocket costs and improve financial wellbeing for Latino family caregivers.
Caregivers will be asked to to participate in 3 online surveys, in addition to participating in 5, 1.5 hour group-based Zoom learning sessions.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| CONFIDENCE Education Intervention | Experimental | Participants will attend the 5-week CONFIDENCEProgram. This program will include attending 5 group-based sessions delivered by videoconference. Each session will last approximately 1.5 hours each and will cover topics such as how to budget, accessing community resources to displace the out-of-pocket costs of caregiving, asking for help, balancing employment and caregiving, and more. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia Caregiving | Behavioral | Multicomponent psychoeducational intervention focused on financial wellbeing |
| Measure | Description | Time Frame |
|---|---|---|
| Monthly Out-of-pocket Caregiving Costs | Monthly out-of-pocket costs of caregiving is based on the tool used by the AARP Public Policy Institute in their 2016 report on the out-of-pocket costs of caregiving. This measure combines caregiver recall of care costs in the previous month, collected at baseline, with 5 days of daily spending diaries. Daily surveys will be sent using an email with a survey link, and a text message reminder. Monthly costs include less-frequent, high-cost expenditures (e.g., mortgage payment), while daily costs include lower-cost items caregivers may pay for more frequently (e.g., groceries). Daily self-reports of spending will be averaged and multiplied by 6 to approximate the number of days in a month, and added to estimated monthly costs. Positive scores indicate increased out-of-pocket costs. The researchers advise against relying on this outcome. In this pilot study, we found that this measure has qualitatively different meanings for adult child and spousal caregivers. | Change in median costs from from baseline to 8 weeks post-intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Psychological Financial Strain | The measure for psychological financial strain is from multiple scales. Items 1 to 14 ask about financial anxiety. Lastly, the investigators included the 1-item question that asks about financial worry ("I worry constantly about money". Participants are asked to indicate the extent to which each statement is true (Very true [3], Somewhat true[2], Somewhat untrue[1], and Complete untrue[0]). Scores are summed such that scores range from 0 to 45, where higher scores indicate higher levels of financial strain. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Kylie Meyer, PhD | Case Western Reserve University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Case Western Reserve University | Cleveland | Ohio | 44106 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| Background | Rainville C, Skufca L, Mehegan L. Family Caregiving and Out-of-Pocket Costs: 2016 Report: AARP; 2016. https://www.khi.org/assets/uploads/news/14680/family-caregiving-cost-survey-res-ltc.pdf | ||
| Background | Norvilitis JM, Szablicki PB, Wilson SD. Factors Influencing Levels of Credit-Card Debt in College Students. J of Applied Social Psychology 2003;33(5):935-47. | ||
| 33146727 | Background | Ritter PL, Sheth K, Stewart AL, Gallagher-Thompson D, Lorig K. Development and Evaluation of the Eight-Item Caregiver Self-Efficacy Scale (CSES-8). Gerontologist. 2022 Mar 28;62(3):e140-e149. doi: 10.1093/geront/gnaa174. | |
| 20938727 |
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De-identified participant data will be made available to qualified investigators upon request to the PI.
Data will be made available, upon request, within 1 year of the study close date or the first publication using research data described, whichever comes first.
Access will be provided using .csv files for de-identified study data and PDF supporting documents, sent by email.
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| ID | Title | Description |
|---|---|---|
| FG000 | CONFIDENCE Education Intervention | Participants attended the 5-week CONFIDENCEProgram. This program involved attending 5 group-based sessions delivered by videoconference. Each session lasted approximately 1.5 hours each and covered topics such as how to budget, accessing community resources to displace the out-of-pocket costs of caregiving, asking for help, balancing employment and caregiving, and more. Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia Caregiving: Multicomponent psychoeducational intervention focused on financial wellbeing |
| Title | Milestones | Reasons Not Completed | ||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
|
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| ID | Title | Description |
|---|---|---|
| BG000 | CONFIDENCE Education Intervention | Participants will attend the 5-week CONFIDENCEProgram. This program will include attending 5 group-based sessions delivered by videoconference. Each session will last approximately 1.5 hours each and will cover topics such as how to budget, accessing community resources to displace the out-of-pocket costs of caregiving, asking for help, balancing employment and caregiving, and more. Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia Caregiving: Multicomponent psychoeducational intervention focused on financial wellbeing |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Continuous | 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 | Monthly Out-of-pocket Caregiving Costs | Monthly out-of-pocket costs of caregiving is based on the tool used by the AARP Public Policy Institute in their 2016 report on the out-of-pocket costs of caregiving. This measure combines caregiver recall of care costs in the previous month, collected at baseline, with 5 days of daily spending diaries. Daily surveys will be sent using an email with a survey link, and a text message reminder. Monthly costs include less-frequent, high-cost expenditures (e.g., mortgage payment), while daily costs include lower-cost items caregivers may pay for more frequently (e.g., groceries). Daily self-reports of spending will be averaged and multiplied by 6 to approximate the number of days in a month, and added to estimated monthly costs. Positive scores indicate increased out-of-pocket costs. The researchers advise against relying on this outcome. In this pilot study, we found that this measure has qualitatively different meanings for adult child and spousal caregivers. | Although all 20 participants were asked to complete daily spending surveys used to calculuate monthly out-of-pocket caregiving costs, only 16 completed daily spendin surveys at baseline. Of these participants, 10 completed daily spending surveys at the 2-month follow-up time. However, one follow-up survey was removed from analyses since it was an extreme outlier (i.e., 16 times higher than next highest monthly cost calculated). | Posted | Median | Inter-Quartile Range | Dollars | Change in median costs from from baseline to 8 weeks post-intervention |
1 year, 5 months
This was a benign behavioral intervention. We did not anticipate any serious adverse events, including mortality.
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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 | CONFIDENCE Education Intervention | Participants attended the 5-week CONFIDENCEProgram. This program involved attending 5 group-based sessions delivered by videoconference. Each session lasted approximately 1.5 hours each and covered topics such as how to budget, accessing community resources to displace the out-of-pocket costs of caregiving, asking for help, balancing employment and caregiving, and more. Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia Caregiving: Multicomponent psychoeducational intervention focused on financial wellbeing |
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| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Kylie Meyer, Principal Investigator | Case Western Reserve University | 216-368-1928 | knm77@case.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 | Aug 24, 2023 | Jul 31, 2024 | Prot_SAP_000.pdf |
| ICF | No | No | Yes | Informed Consent Form | Aug 16, 2022 | Jul 31, 2024 | ICF_001.pdf |
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| ID | Term |
|---|---|
| D000084802 | Caregiver Burden |
| D000086522 | Financial Stress |
| D003704 | Dementia |
| D000544 | Alzheimer Disease |
| ID | Term |
|---|---|
| D013315 | Stress, Psychological |
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |
| D001927 | Brain Diseases |
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| Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
| Caregiver Self-efficacy | Self-efficacy is measured using the Caregiver Self-Efficacy Scale. This 8-item scale asks about multiples domains of self-efficacy (e.g., managing behavioral symptoms, accessing respite, and controlling upsetting thoughts). It demonstrates high reliability (alpha=0.89) and good test-retest reliability (0.73). Participants rate the extent to which they are "Not confident at all" (1) to "Totally confident" (10). Scores range from 8 (lowest level of self-efficacy) to 80 (highest level of self-efficacy). The outcome measure will use the average change score from baseline scores. Positive scores indicate an increase in self-efficacy. | Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
| Caregiver Resourcefulness | Resourcefulness is measured using the 28-item Caregiver Resourcefulness Scale (alpha=0.85). This scale has two factors: one focused on help-seeking and another on self-help. Caregivers are asked the frequency at which they use different strategies to manage challenges, and may respond: Not at all like me (0), Pretty much not like me (1), A little bit not like me (2), A little bit like me (3), Pretty much like much like me (4), or Very much like me (5). Items are added together to create a total score. Scores range from 0 to 140, where higher scores indicate higher levels of resourcefulness. The outcome measure will use the average change score from baseline scores | Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
| Background |
| Shim S, Barber BL, Card NA, Xiao JJ, Serido J. Financial socialization of first-year college students: the roles of parents, work, and education. J Youth Adolesc. 2010 Dec;39(12):1457-70. doi: 10.1007/s10964-009-9432-x. Epub 2009 Jul 4. |
| Background | Shapiro GK, Burchell BJ. Measuring financial anxiety. Journal of Neuroscience, Psychology, and Economics. 2012;5(2):92-103. |
| 16764178 | Background | Zauszniewski JA, Lai CY, Tithiphontumrong S. Development and testing of the Resourcefulness Scale for Older Adults. J Nurs Meas. 2006 Spring-Summer;14(1):57-68. doi: 10.1891/jnum.14.1.57. |
| 39420566 | Derived | Meyer K, Mage SM, Gonzalez A, Zauszniewski JA, Rhodes S, Perales-Puchalt J, Wilber K, Song L, Puga F, Benton D. Lessons from a Pilot Study of a Culturally Tailored Financial Well-Being Intervention Among Latino Family Caregivers. J Appl Gerontol. 2025 Jun;44(6):938-948. doi: 10.1177/07334648241293524. Epub 2024 Oct 17. |
| years |
|
| Sex: Female, Male | Count of Participants | Participants |
|
| Ethnicity (NIH/OMB) | Count of Participants | Participants |
|
| Race (NIH/OMB) | Count of Participants | Participants |
|
| Region of Enrollment | Number | participants |
|
| Monthly out-of-pocket caregiving costs | The number of participants with baseline data on out-of-pocket costs of care is lower than those who completed the baseline survey because 4 participants who completed the baseline survey did not complete the daily spending surveys. | Median | Inter-Quartile Range | Dollars |
|
| Psychological financial strain | The measure for psychological financial strain is from multiple scales. Items 1 to 14 ask about financial anxiety. Lastly, the investigators included the 1-item question that asks about financial worry ("I worry constantly about money". Participants are asked to indicate the extent to which each statement is true (Very true [3], Somewhat true[2], Somewhat untrue[1], and Complete untrue[0]). Scores are summed such that scores range from 0 to 45, where higher scores indicate higher levels of financial strain. | Mean | Standard Deviation | units on a scale |
|
| Caregiver Self-Efficacy | Measured using the Caregiver Self-Efficacy Scale. This 8-item scale asks about multiple domains of self-efficacy. It demonstrates high reliability (alpha=0.89) and good test-retest reliability (0.73). Participants rate the extent to which they are "Not confident at all" (1) to "Totally confident" (10). Scores range from 8 (lowest level of self-efficacy) to 80 (highest level of self-efficacy). The outcome measure will use the average change score from baseline scores. Positive scores indicate an increase in self-efficacy. | One participant had missing data on this measure. | Mean | Standard Deviation | units on a scale |
|
| Resourcefulness | Resourcefulness is measured using the 28-item Caregiver Resourcefulness Scale (alpha=0.85). Caregivers are asked the frequency at which they use different strategies to manage challenges, and may respond: Not at all like me (0), Pretty much not like me (1), A little bit not like me (2), A little bit like me (3), Pretty much like much like me (4), or Very much like me (5). Items are added together to create a total score. Scores range from 0 to 140, where higher scores indicate higher levels of resourcefulness. The outcome measure will use the average change score from baseline scores | Four participants had missing data on this measure. | Mean | Standard Deviation | units on a scale |
|
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| Secondary | Psychological Financial Strain | The measure for psychological financial strain is from multiple scales. Items 1 to 14 ask about financial anxiety. Lastly, the investigators included the 1-item question that asks about financial worry ("I worry constantly about money". Participants are asked to indicate the extent to which each statement is true (Very true [3], Somewhat true[2], Somewhat untrue[1], and Complete untrue[0]). Scores are summed such that scores range from 0 to 45, where higher scores indicate higher levels of financial strain. | In both the first follow up and second follow up survey, there were 6 missing cases. In addition, for item-level missingness on this scale contributes to missing data for 2 additional cases. | Posted | Mean | Standard Deviation | score on a scale | Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
|
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|
| Secondary | Caregiver Self-efficacy | Self-efficacy is measured using the Caregiver Self-Efficacy Scale. This 8-item scale asks about multiples domains of self-efficacy (e.g., managing behavioral symptoms, accessing respite, and controlling upsetting thoughts). It demonstrates high reliability (alpha=0.89) and good test-retest reliability (0.73). Participants rate the extent to which they are "Not confident at all" (1) to "Totally confident" (10). Scores range from 8 (lowest level of self-efficacy) to 80 (highest level of self-efficacy). The outcome measure will use the average change score from baseline scores. Positive scores indicate an increase in self-efficacy. | A participant had item-level missingness at baseline, such that baseline data is available for 19 participants. Six participants did not complete the first follow up and the second follow up survey. Another participant had missing item-level data in the first follow up survey, such that there are 7 missing cases for "Change from baseline to post-intervention" and 6 missing cases for "Change from baseline to 8 weeks post-intervention." | Posted | Mean | Standard Deviation | score on a scale | Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
|
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| Secondary | Caregiver Resourcefulness | Resourcefulness is measured using the 28-item Caregiver Resourcefulness Scale (alpha=0.85). This scale has two factors: one focused on help-seeking and another on self-help. Caregivers are asked the frequency at which they use different strategies to manage challenges, and may respond: Not at all like me (0), Pretty much not like me (1), A little bit not like me (2), A little bit like me (3), Pretty much like much like me (4), or Very much like me (5). Items are added together to create a total score. Scores range from 0 to 140, where higher scores indicate higher levels of resourcefulness. The outcome measure will use the average change score from baseline scores | Six participants did not complete the first follow up and the second follow up survey. In addition, two other participants had missing item-level data in the first follow up survey and another 4 had missing item-level data on the second follow up survey, such that there are 8 missing cases for "Change from baseline to post-intervention" and 10 missing cases for "Change from baseline to 8 weeks post-intervention." | Posted | Mean | Standard Deviation | score on a scale | Change from baseline to post-intervention (within 1 week); change from baseline to 8 weeks post-intervention |
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| 0 |
| 20 |
| 0 |
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| 0 |
| 20 |
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| D002493 |
| Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D024801 | Tauopathies |
| D019636 | Neurodegenerative Diseases |
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