Caregiver Speaks: A Technologically Mediated Storytelling Intervention

Study Overview
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Brief Summary
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Caregiver speaks is a randomized trial of a Photo elicitation intervention for caregivers of Alzheimers patients.

Detailed Description
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This randomized controlled trial will test an intervention for an understudied population - family caregivers of persons living with dementia (PLWD). This project is the first of its kind to longitudinally follow family caregivers of PLWD into bereavement. Furthermore, the intervention, Caregiver Speaks, employs an innovative storytelling approach - photo elicitation (the use of photos to elicit thoughts, feelings, and reactions to a person's experience) - to encourage family caregivers to make meaning of their caregiving and bereavement experiences as a way of reducing depression, anxiety, and ultimately grief intensity. Caregiver Speaks is deployed via a readily available social media network (Facebook), which allows easy access for already overburdened family caregivers of PLWD, and can improve their social support. Preliminary work demonstrates that 1) this project is feasible as an RCT intervention study of caregiver experiences, 2) the research team can conduct this type of storytelling intervention via Facebook, and 3) family caregivers use (and want to use) social media during active caregiving and into bereavement, despite their heavy care burdens. The research team will base the proposal on Park and Folkman's meaning-making model of stress and coping. This model illustrates how individuals cope with adverse life events (i.e., trauma, or death of a loved one) by reconstructing and transforming the event's meaning and incorporating the reappraised meaning into one's larger self-narrative. Caregiver Speaks uses storytelling in the form of photo-elicitation, in order to facilitate this meaning-making. Caregivers share photos and discussions regarding their caregiving and bereavement experiences in a private, facilitated Facebook group. This model suggests that caregivers' ability to make sense of (meaning making), and find benefit in an adverse life situation (caregiving and bereavement) will be validated through social support, and result in reduced depression, anxiety, and grief intensity. Caregivers will be randomly assigned to either: 1) Group 1, which will receive the Caregiver Speaks intervention, or 2) Group 2, which will receive standard care, including the standard care for bereavement. The research team will use both quantitative and qualitative methods in parallel and equal status to measure the intervention's efficacy. The overall hypothesis is that participating in Caregiver Speaks during caregiving and into bereavement will reduce caregivers' depression and anxiety, and as a result will reduce grief intensity in bereavement. The three specific aims are to: 1) determine the efficacy of the Caregiver Speaks intervention in reducing depression and anxiety among family caregivers of people with dementia, 2) examine the intervention's effect on grief intensity among bereaved family caregivers of people with dementia, and 3) describe how caregivers made meaning of their caregiving and bereavement experiences.

Official Title
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Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of Individuals With Alzheimer's Disease and Other Dementias

Conditions
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Alzheimer Disease

Intervention / Treatment
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* Behavioral: Photo elicitation


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: be a designated family caregiver (i.e., a family member or friend providing unpaid care) of a PLWD who is enrolled in hospice care, be at least 18 years old, be involved in decisions related to their loved one's hospice care, have access to a digital camera or other photo-taking device such as a cell phone be willing to photograph images they feel capture their caregiving and bereavement experiences be willing to set up a Facebook account and join the private Facebook group, 7) have access to e-mail for REDCap survey data collection Exclusion Criteria: none

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Interventional Model Description: Randomized 2 arm study; control and intervention
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| No Intervention: Control<br>Will receive usual hospice care plus measures | |
| Experimental: Intervention<br>Will receive photo elicitation intervention and will join a secret Facebook group to share photos with other caregivers | Behavioral: Photo elicitation<br>* Caregivers are taught to use photos to illustrate various feelings and meanings<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in Public Health Questionaire- 9 depression score | Caregiver depression measure.Response options range from 0 (not at all) to 3 (nearly every day), with total scores ranging from 0 to 27. Higer scores indicate more depression. | Baseline and twelve months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in General Anxiety Disorder -7 anxiety score | Caregiver anxietyResponse options range from 0 (not at all) to 3 (nearly every day), with total scores ranging from 0 to 21. Total scores of 5, 10, and 15 represent thresholds for mild, moderate, and severe anxiety, respectively. Total scores of 10 or higher are generally considered clinically significant, signaling a need for additional evaluation and possible intervention | Baseline and twelve months |