Family Caregiver Perspectives on Digital Methods to Measure Stress: Qualitative Descriptive Study

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Abstract
Background: Family caregivers provide essential care in the home to millions of individuals around the globe annually. However, family caregiving results in considerable burden, financial hardship, stress, and psychological morbidity. Identifying and managing stress in caregivers is important as they have a dual role in managing their own health as well as that of the person they care for. If stress becomes overwhelming, a caregiver may no longer be able to perform this essential role. Digital methods of stress monitoring may be 1 strategy for identifying effective interventions to relieve caregiver burden and stress. Objective: This study aims to explore the perceived acceptability, challenges, and opportunities of using digital and biosensing technologies to measure caregiver stress. Methods: We conducted a descriptive qualitative study using semistructured interviews with an interview guide structured to obtain qualitative data addressing our study aims. We used reflexive thematic analysis methods. We recruited adult family caregivers (aged 18 years and older) currently or previously caring for an adult in the home with significant health issues. Interview questions focused on stress monitoring more generally and on ecological momentary assessment, remote monitoring technologies such as smartwatches, and fluid biosensors. Results: We recruited 27 family caregivers of whom 19 (70%) were currently in a caregiving role, and the remainder were previously in a caregiving role. We identified 3 themes with 10 subthemes addressing elements of acceptability, challenges, and opportunities of using digital and biosensing technologies to measure caregiver stress The themes comprised “providing meaningful data” with subthemes of “monitoring without action is pointless,” “monitoring that enables self-management,” and “seeing the bigger picture”; “low-burden monitoring” with subthemes of “low effort,” “practical alongside daily routines,” and “retaining control over monitoring”; and “inadvertent harms of stress monitoring” with subthemes of “stigma of stress,” “need for discretion,” “contributing to stress,” and “trust.” Conclusions: In this descriptive qualitative study examining the perspectives of a diverse sample of family caregivers on methods of stress monitoring, we identified 3 themes addressing elements of acceptability, challenges, and opportunities. These provide useful considerations for the use of stress monitoring and implementation of interventions to ameliorate family caregivers’ stress of relevance to social care and community teams, researchers, and policy makers. These include providing meaningful situationally specific data resulting in action, that does not contribute to caregiver burden, or inadvertent harm to either the caregiver or the care recipient.

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