Technology can support caregivers as they dance with their roles
This blog post is based on the proceedings of the CHI’24 paper Dancing with the Roles: Towards Designing Technology that Supports the Multifaceted Roles of Caregivers for Older Adults, authored by Long-Jing Hsu and Christina Chung. It will be presented at the ACM CHI’24 on Tuesday, May 14th, 2024, at 5.00 pm (UTC -10:00).
What is it like to be a caregiver for older adults? I have a close friend who cares for a loved one living with dementia. Chatting with her as we cycle or hike together, I’ve realized how complex the caregiver’s role can be: she is a friend, an advocate, and a caregiver, all while managing the various demands of her role. How does she cope with the changing personality of her loved one due to dementia? She has mentioned instances where her loved one starts shouting if she leaves for even 30 seconds.
While Human-Computer Interaction (HCI) research has explored these roles, the invisible work of managing them remains under-explored. Invisible work includes tasks of significant importance that often go unnoticed by others. In this paper, we aim to uncover caregivers' invisible tasks while managing multiple roles in the caregiving ecosystem.
Method:
To address this gap, we interviewed 19 informal caregivers of older adults to uncover their invisible work and the potential role of technology in supporting these complex responsibilities.
Findings and Design Considerations:
1.Caregivers often find it challenging to decide when and how to perform potentially conflicting roles, especially those that conflict with their own identity as a caregiver. For instance, one caregiver discussed the difficulties of managing her 88-year-old mother’s diet and medication regimen, describing these “parenting moments” as particularly taxing for both of them:
“Very difficult. Because if she was my kid, you can just be like, ‘Well, I’m the mom so you just have to do it. But she’s not; she’s my mom. So she kind of feels like she can tell me what to do. Because she’s my mom.”
To address this, design strategies could focus on facilitating the identification and reflection of existing roles. More specifically, technology could provide a clear understanding of distinctive roles among individuals and stakeholders that facilitate communication, negotiation, and discussions about caregiver role expectations. This would help caregivers deliberately recognize the multiple roles they inhabit, aiding them in navigating the complexities of their caregiving responsibilities.
2. Caregivers often struggle with managing time and responsibilities across multiple roles, particularly when trying to balance the 24 hours in their day effectively. One caregiver highlighted the complexities of coordinating her daily schedule with the needs of her mother:
“[My routine] is centered around her routine and what makes her happy and comfortable. During certain times of the day, it’s definitely geared toward her happiness and her lifestyle rather than my own lifestyle.”
In response, design solutions could focus on role-based scheduling that acknowledges and supports the need to maintain balance while alleviating guilt. The technology could provide encouragement or acknowledgment mechanisms within the scheduling process that help caregivers recognize and emphasize the value of their invisible work. Such tools help caregivers effectively allocate time for caregiving while also attending to their personal needs and well-being.
3.Caregivers often face the challenge of adapting to and transitioning between various caregiving roles, particularly when dealing with the changing personalities of loved ones due to conditions like dementia. This adaptation can feel akin to mourning, as one participant described:
“It’s like a grief, it’s like a death. It’s like mourning a death.”
Design solutions could, therefore, focus on helping caregivers find gratitude and positivity during these difficult transitions. The technology could help with positive aspects of the evolving roles and expectations within the caregiving ecosystem, and prompt the caregivers in reflecting on these changes, increase awareness, and alleviate stress. By emphasizing the development of resources that support emotional resilience and provide strategies for coping, designs can offer much-needed support during these challenging times.
To conclude, managing multifaceted roles and filial obligations presents a compounded challenge for caregivers. Balancing these multiple roles requires engaging in significant invisible work and responsibilities. Human-Computer Interaction (HCI) design can play a crucial role in supporting caregivers by offering tools that help manage these complexities in multiple effective ways.
Want to know more? Please check out our paper for more information or reach out to me via hsulon@iu.edu :)
