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Every Cloud Has a Silver Lining: Exploring Experiential Knowledge and Assets of Family Caregivers

Background: Family caregivers of patients with chronic conditions often subject themselves to drastic life changes. The quality of life of the caregivers often decreases noticeably at the beginning of the caregiving trajectory, because they typically reorient their lives to focus on the patient's health status. As a result, previous studies viewed caregivers primarily as people who need help and focused on how technologies can support them. However, in our study, we found that caregivers are also capable of developing their own experiential knowledge and strategies, which have been invisible in previous caregiver studies. Methods: By conducting in-home interviews with fourteen family caregivers, we present the types of new knowledge and coping strategies family caregivers have developed from their lived experiences during everyday caregiving tasks. Findings: These include 1) establishing new mindsets, 2) developing mindful activities, 3) building relationship management strategies, and 4) sharing experiences with people in their own networks. Conclusions: Based on our findings, we call for an asset-based approach that will help researchers notice the capabilities of caregivers. This approach could enable researchers to be more reflexive in the incorporation of caregivers' devalued knowledge within their system designs. 

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Proceedings of the ACM on human-computer interactions
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Proceedings of the ACM on Human-Computer Interaction
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