Supporting the critical role of family carers in wellness management

Aging populations, the increased prevalence of chronic disease, and spiraling healthcare costs have led to calls for policy and technology that focuses on wellness management, preventative interventions, and decentralized healthcare. This has prompted several initiatives aimed at empowering individuals to proactively manage their wellness, including employee wellness programmes, step-tracking mobile apps, etc. However, a critical actor in this proposed new healthcare model is the family carer. These individuals are charged with managing outpatients’ wellness, tracking deteriorations, providing support, and even administering routine care in order to minimize and/or delay the need for further clinical intervention. Yet for most people, ‘wellness’ is a poorly understood and ambiguously measured concept. Hence, family carers are often asked to rely upon personal discretion to perform their duties. This paper uses a qualitative case study based on a series of semi-structured interviews to explore how family carers manage this responsibility, the support available to them (technologically and socially), and the challenges they face. It is informed by a research model which combines activity theory and attribute substitution theory in order to make sense of how the diverse actors involved in wellness management (e.g. the family carers, the patients, other family members, clinical/non-clinical healthcare workers) communicate and coordinate. Findings suggest family carers’ role in managing outpatient wellness is hindered by their inability to gather/share key wellness-related information with others involved. The study concludes by calling for better technological infrastructure linking carers with clinical professionals and more standardized information channels between various stakeholders in the caring activity.

• Illustrates the social and technological complexity of wellness management activities
• Shows lack of ‘access to’ and ‘sharing of’ wellness related information in such activities
• Demonstrates the need for development of new ICTs to better support family carers