Family caregiver perspectives on digital methods to measure of stress: a qualitative descriptive study (Preprint)

Abstract

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 manging 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 one strategy of identifying effective interventions to relieve caregiver burden and stress.

To explore perceived acceptability, challenges, and opportunities of using digital and biosensing technologies to measure caregiver stress.

We conducted a descriptive qualitative study using semi-structured interviews and framework analysis methods. We recruited adult family caregivers (18 years) 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. Data were analysed using the framework approach.

We recruited 27 family caregivers of whom 70% were currently in a caregiving role, the remainder were previously in a caregiving role. We identified three themes with ten subthemes. 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’.

In this descriptive qualitative study examining the perspectives of a diverse sample of family caregivers on methods of stress monitoring we identified three themes. These provide useful considerations for use of stress monitoring and implementation of interventions to ameliorate family caregiver 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 in inadvertent harm to either the caregiver or the care recipient.

Not applicable