Caregiver Speaks: A Technologically Mediated Storytelling Intervention

NCT ID: NCT04103580

Last Updated: 2025-02-26

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 457 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2020-03-01
• Study Completion Date: 2023-08-31

Brief Summary

Caregiver speaks is a randomized trial of a Photo elicitation intervention for caregivers of Alzheimers patients.

Detailed Description

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.

Conditions

Alzheimer Disease

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

Control

Will receive usual hospice care plus measures

Group Type: NO_INTERVENTION

No interventions assigned to this group

Intervention

Will receive photo elicitation intervention and will join a secret Facebook group to share photos with other caregivers

Group Type: EXPERIMENTAL

Photo elicitation

Intervention Type: BEHAVIORAL

Caregivers are taught to use photos to illustrate various feelings and meanings

Interventions

Photo elicitation

Caregivers are taught to use photos to illustrate various feelings and meanings

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

1. be a designated family caregiver (i.e., a family member or friend providing unpaid care) of a PLWD who is enrolled in hospice care,

2. be at least 18 years old,

3. be involved in decisions related to their loved one's hospice care,

4. have access to a digital camera or other photo-taking device such as a cell phone

5. be willing to photograph images they feel capture their caregiving and bereavement experiences

6. 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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

University of Pennsylvania

OTHER

Sponsor Role: collaborator

Washington University School of Medicine

OTHER

Sponsor Role: lead

Responsible Party

Debra Parker Oliver

Professor, Division of Palliative Medicine

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Debra Parker Oliver, PhD

Role: PRINCIPAL_INVESTIGATOR

Washington University School of Medicine

Locations

University of Missouri

Columbia, Missouri, United States

Countries

United States

Provided Documents

Document Type: Study Protocol

View Document

Document Type: Statistical Analysis Plan

View Document

Other Identifiers

2016062 R01AG59818-01A1

Identifier Type: -

Identifier Source: org_study_id