Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of Individuals with Alzheimer’s Disease and Other Dementias

Status: Ongoing (End date 2025)

Abstract: 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.

Collaborators: Washington University STL, University of Pennsylvania, Hospice of the Western Reserve, and more.

Funding: National Institute on Aging (NIA)

Story Up: A Digital Storytelling Intervention for Parental Caregivers of Seriously Ill Adolescent and Young Adults (AYAs)

Status: Upcoming (Summer of 2023)

Abstract: The diagnosis of a serious illness for AYAs can be a complex experience for parental caregivers who are at high risk for long-term morbidity as caregiving demands increase with illness severity. Parental caregivers of seriously ill AYAs report anxiety and depression, in addition to below standard quality of life. These psychosocial consequences compound psychological distress among parental caregivers as they actively care for their seriously ill AYAs. Research shows that intervening during active caregiving, as well as interventions focusing on meaning reconstruction that are also narrative in nature, might positively impact psychological well-being for parental caregivers of seriously ill AYAs. Digital storytelling (DST) engages participants in a multi-media narrative process, combining recorded narratives with chosen artifacts (e.g., images, music, and other digitized objects) into a 3 to 6-minute video that can be shared with others. We have developed a theoretically grounded DST intervention called Story Up as a tool for promoting meaning-making and reducing depression and anxiety among this population. Story Up is rooted in Park and Folkman’s meaning-making coping model, which posits that an individual’s ability to make sense of, and find benefit in, adverse life situations (e.g., caring for AYAs with serious illness) can improve their ability to make meaning of such situations, thus reducing depression and anxiety. This scientific premise provides solid rationale for targeting parental caregivers of AYAs with an intervention aimed at fostering meaning-making and reducing psychological distress (i.e., depression and anxiety) during the active caregiving phase. The primary goal of this pilot study is to determine feasibility and acceptability of the virtual delivery of Story Up as a meaning-centered intervention designed to reduce depression and anxiety among parental caregivers of seriously ill AYAs. Our specific aims are to: 1) Determine the feasibility and acceptability of delivering Story Up in a virtual format (using Zoom technology) to parental caregivers of seriously ill AYAs. 2) Determine feasibility and acceptability of measures to assess parent depression, anxiety, and meaning-making. 3) Conduct a mixed-method, exploratory analysis to determine participant perceptions of the benefits of the Story Up intervention on: (a) participant distress, (b) ability to make meaning of caregiving experience, and (c) patient quality of life. Our project is the first of its kind to virtually deliver a meaning-centered DST intervention, called Story Up, to parental caregivers of seriously ill AYAs, with a primary focus of reducing depression and anxiety. Results from this study will support a larger efficacy trial of Story Up and significantly contribute to the growing evidence base for meaning-centered narrative interventions in palliative care.

Collaborators: Journeys Pediatric Palliative Care program at the University of Missouri, Vanderbilt University Pediatric Palliative Care program.

Funding: Funds submitted to National Institute of Nursing Research (NINR; awaiting NOA).

Virtual Reality and Neurofeedback as a Non-pharmacologic Intervention for the Management of Cancer Symptoms

Status: Ongoing

Abstract: More than 60% of patients with advanced or metastatic cancer report having pain.1 Poor management of pain symptoms for patients with cancer results in greater psychological distress, decreased social support, and thus lower quality of life (QOL).2 Even when access to pharmacologic intervention is a non-issue, pain remains a prevalent experience for patients with cancer.1 Meaning, co-occurring non-pharmacologic approaches to managing pain for patients with cancer might optimize QOL among this population. There is a growing body of evidence demonstrating the usefulness of mindfulness activities in reducing pain, distress, and improving QOL among patients who have cancer.3 Virtual reality is one way to deliver mindfulness activities, as the virtual experience often distracts the viewer from the reality of their pain, which can provide relief in some situations.4 In addition, guided mindfulness training delivered through virtual settings can shift one’s cognitive thoughts about their pain, which positively impacts mood and QOL. VR has been shown to be effective in reducing pain in acute settings, however, there are few studies examining the impact of VR on cancer pain, specifically. To our knowledge there are no studies examining the impact of mindfulness activities delivered via VR on cancer-related pain intensity, and mood. Therefore, the overarching purpose of this project is to explore feasibility (relative to recruitment and retention) and acceptability of HEALium, a mindfulness-based virtual reality intervention, as a non-pharmacologic approach to managing cancer pain. In addition, we seek to understand the impact of HEALium on pain intensity and mood.

Collaborators: University of Missouri Ambulatory Infusion Clinic

Prior Studies

Digital Storytelling as an intervention for Bereaved Family Members

Status: Completed

Abstract: Experiencing the loss of a family member is profoundly significant. Bereaved family members who find meaning in their loss are said to fare better than those who do not. Bereaved family members participated in Digital Storytelling as a way to make meaning of their loss. Results revealed a decrease in depression and anxiety for participants. Qualitative data revealed their participation in Digital Storytelling facilitated growth and meaning, and also affected them in these ways: 1) the writing and verbalization of the script helped participants organize their thoughts and emotions about the loss; 2) having the space to share with a collective group encouraged confidence in their ability to discuss their feelings with others; and 3) completing the final product was emotionally powerful for participants. This study supports the clinical applicability of Digital Storytelling as a tool for facilitating meaning-making among bereaved family members.

Living With Pain: (DETAILS COMING)