Designing for Family Caregivers: Creating the map as we go (A panel in 5 acts)

Geri Baumblatt geri@emmisolutions.com
Rajiv Mehta rajiv@atlasofcaregiving.com
Sangeeta Agarawai san@helpsyhealth.com,
Phylene Wiggins pwiggins@sbfoundation.org

Abstract

Family caregivers are nurses, social support, cooks, and care coordinators. Supporting them is not just essential for the patient’s/caregiver's health, but family caregivers themselves are at risk for becoming new patients. They can suffer injuries doing the physical work of caring, and they experience enormous stress, sleep deprivation, and social isolation, while their own self care falls by the wayside.

How can we support family caregivers? First, we need to understand their experiences, how they view their own efforts and challenges, and how their caregiving experiences evolve through various phases of care so we can create resources.

Act 1: Rajiv Mehta will discuss the pioneering family caregiving research the Atlas of Caregiving is conducting. Hear how wearables, like a Narrative Clip camera and Empatica E4, as well as motion sensors, interviews, CareMaps, and logs are being used to better understand the reality and variety of family caregiving experiences.

Act 2: Phylene Wiggins will describe how CareMaps are being used in Santa Barbara to better understand family caregiving in the community, to identify untapped resources and unmet needs, and leading to changes in implementation by a variety of community institutions involved in Santa Barbara Foundation’s Community Caregiver Initiative

Act 3: Geri Baumblatt will describe how interactive resources are being designed to support both immediate and remote family caregivers during the onset of dementia, the transition to hospice, and during transitions from hospital to home. What’s the impact (expected and un-) on patient, family and hospital?

Act 4: Sangeeta Agarawal will will discuss Helpsy’s care plan app that enables patients to find and work with a coach for the patient and caregiver to assist through this transition, anticipate needs and make a plan to address it, enable them to leverage community support resources, and support one another. She will share results on the impact this solution had for caregivers.

Act 5: Geri will moderate a conversation to dig into:
What caregiver problems are most challenging to solve, and how other challenges were inadvertently addressed.
What’s happening next?
How are some hospitals changing the way they utilize and implement these emerging resources?
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