Content of Communication

It was observed from our field study that patients expected to be informed about the system status and notifications. Patients felt disconnected from the process of iSwear notifications being sent to their caregivers. Future wellness and CDM systems should engage all stakeholders as active and communicating participants in the system. Another challenge was in the message design. Messages must clearly communicate the present state of the patient, set correct expectations on adherence and wellness activity and inform about coherent intervention required from the caregiver. Information from the monitoring systems should not raise false alarms leading to caregiver panic attacks. Knowledge of CDM and subject matter expertise is another important factor to be considered while designing the content of CDM communications. The reporting or notification systems should be personalized enough to cater to patient centric or caregiver centric needs. A medical report may be useful for an experienced conjugal caregiver but the same may be irrelevant for a remote filial caregiver. Similarly, caregivers may prefer to book-keep patient records or prescriptions, but the same cannot be used as an activity checklist for patients. Expectation of information also varies. We observed caregivers book-keep all records and prescriptions to prepare a simple checklist of activities for self-referencing. While remote caregivers were concerned about the quality of professional care and details of medical adherence, in-person caregivers were involved in the entire inventory management of care. Future wellness and CDM systems should abstract reporting information based on different stakeholder expectations to make it more actionable.

Nature of Communication

Patient monitoring and recommendation for care giving can be targeted to be effective and timely in nature during acute conditions. In the case of chronic conditions, the care required is continuous for long swathes of time. Common physiological parameters that continuously and pervasively monitor the patient can yield a holistic assessment of patient activity even if in varying levels of precision. We realize that the nature of communication in caregiving situations are emotional and affecting rather than technical or to the point. Thus communication between caregivers and patients should be able to represent the emotional quotient while aiming to remove ambiguity about communicating any unusual patient activity.

Future systems should also consider the condition, time of the day and personal preference while sending messages to caregivers. In both the ethnography and the preliminary study, we observed caregivers having extensive discussions with patients once a day. Messages could be tailored around such caregiver preferences. Information specific to infrastructure, work culture and other situational contexts can help in designing time and frequency protocols aimed for the caregiver.

Designing Incremental Interventions

In our preliminary study we observed users struggling to adapt to the iSwear communication protocols. They had difficulty in responding to messages pushed by the device. The device brought in some disruptive triggers to their current caregiving arrangement. Perhaps a week of usage is sub-optimal for the desired adoption but there is definite need for any device or system to be non-intrusive and pervasive enough if it had to remain with the patient all the time. While caregivers wanted systems that could perpetually inform them about the patient’s condition, issues of privacy and the adoption of an always-on technology into a patient’s daily life remain a challenge. A system for CDM should be built to bring in gradual and incremental changes in patient-caregiver routines and lifestyles.

CONCLUSION

Future opportunities for a qualitative and design pilot of iSwear include a more detailed and longitudinal usability evaluation of the iSwear system. We further plan to extend our communication capabilities to a wider stakeholder community such as extended family members and formal caregivers. We discussed some of the open implications on content and nature of communication in a CDM system. These implications can be further extended to design individual persuasion and motivation strategies in a range of wellness monitoring and persuasion applications.

Our ethnography provided an understanding of trust-persuasion quadrants of caregiving. We realize that our ethnography has been serviced to break down ‘trust’ and map them to the presence and nature of relationship between the caregiver and patient- in our case one that resides within Indian families. We would also like to confess our awareness of reducing the caregiving relationship into a function of two discrete variables. We consider this to be a beginning of a discussion about designing systems that are sensitive to and accommodative of complex human motivations and behaviors, no less, in a care giving context. Expanding these quadrants to care work trajectories for specific chronic conditions will offer a deeper understanding of specific care requirements. We hope this will lower the barrier in building caregiver centric applications and engender a new class of wellness and CDM tools. Family ethnographies, designing iSwear, its in-situ pilot capturing caregiver-patient exchanges, post-pilot efficacy mapping, and the evolution of a care ontology to define communication protocols in a care context clearly underline the importance of a data eco-system. Capturing right amounts of patient care feedback data, at critical moments of caregiving helped to comprehend not only a specific care ecosystem but to evolve a generalizable ontological understanding of communication practices in the patient-caregiver everyday repertory.

Jyotirmaya Mahapatra works in the field of Human Computer Interaction. He currently works as Research Engineer with the focus on User Experience Design of various products. He has received his Masters in Design degree in 2012 from Indian Institute of Technology, Bombay (IITB) where he has designed “Graphics management system for high scale visualizations” and “Rehabilitation tools for Tarumatic Brain Injury patients” under the supervision of Prof. Pramod Khambete and Prof. Anirudha Joshi respectively. Prior to joining XRCI he was working as User Experience Designer for Clarice Technologies where he has designed product from various domains such Machine log analytics, Human resources, Database management etc.

Nimmi Rangaswamy is a Senior Researcher at the Xerox Research Centre India, Bangalore. She is a social anthropologist and conducts ethnographic research in the area of work practice and HCI at XRCI. Her research analysis are informed by a variety of social approaches to technology use and thick field descriptions. At XRCI, Nimmi is working on projects in Customer Care and Urban Mobility. Nimmi received her PhD and M-Phil from the Delhi School of Economics and University of Mumbai in Social Anthropology. Nimmi is also currently adjunct professor at the Indian institute of Technology, Hyderabad teaching two courses: “ICT for Development: Debates on Theory and Praxis” and Sociology of Digital Media. Previously, her job at Microsoft Research was a combination of theoretical analysis and ethnographic field research to understand technology use in developing countries. These are studies of patterns of technology adoption in various social contexts and spaces in India, ranging from middle class consumption of domestic media, the business models of cyber cafés and the use of mobile internet and Facebook among urban slum youth.

2016 Ethnographic Praxis in Industry Conference Proceedings, p. 328–347, ISSN 1559-8918,
https://www.epicpeople.org

NOTES

Acknowledgment – The authors would like to thank all the patients and caregivers who participated in the ethnography and the ongoing study of the iSwear system.

1 Here, we use ontology as in the information sciences representing the regenerative knowledge and definition of the types, properties, and interrelationships of the entities that exist for a particular domain of discourse.