Sample

The sample consisted of 10 in-person caregivers and eight remote caregivers. Eight out of 18 of the participants (in-person: eight; remote: zero) were either wives taking care of husbands (i.e. six) or vice versa (i.e. two). We will address them as conjugal caregivers in rest of this paper. The rest 10 of the participants (in-person: six remote: four) were children taking care of their parents. We will address them as filial caregivers. In total we had nine female and nine male caregivers.

Our sample had no caregivers falling in the category of conjugal-remote scenario- by remote we mean spouses, still married but living in different homes. The term ‘remote’ is used, for the purposes of this study, to exclusively denote physical distance. We did not have the wherewithal to include emotional distance in our research framework. Moreover, physical distance was one of the implications for design in this study influencing the iSwear system. We also had spouses living together impart remote caregiving to partners during specific hours in a day from their work places during working hours. Instances of caregiving such as being vigilant about food and medicine intake, and follow-ups with formal caregiver would often occur in a remote scenario. Thus we considered data from conjugal-In Person scenarios for analysis, in which the caregiver had been away from the patient for a limited amount of time. We had cases of extended families [with more than two generations of a family lived together where multiple caregivers are involved in providing various degrees of support to the patients. Six were joint families in which caregivers took support from other family members. Extended family members such as in-laws or close relatives take up caregiver roles for a specific duration accompanying the patient for periodic checkups, or other activities when the primary caregiver is not around. Most of the patients from these 18 families have had at least one acute episode during which our participants have managed their care. All the participants were reasonably versed with a few computer/mobile applications and health devices available for patient monitoring and adherence. Two caregivers were also versed with using bedside systems such as a health-buddy, but only in a hospital setting.

Table 1. Preview of selected sample

All families belonged to the middle-income group in urban India having annual income ranging between USD 3000 and 10,000 with medication alone costing USD 150 to 500 per month for every patient. Additionally they were incurring cost of other expensive medication in case of shoot in problem and regular checkups. They were all taking continuous professional support from established hospitals in their cities, sometimes even further away in bigger hospitals, based on the availability of specialization and expertise. A basic fall alarm, tracker bracelet or bedside alarm that can be used at home would cost anywhere between USD 100-250 but chances of their adoption are extremely low in Indian homes.

Some of our participants had one or more chronic conditions – diabetes, arthritis, hypertension, lung disease, renal disorders, and heart problems. It is important to note that the kind and extent of medication or care required may differ in all of these diseases, but the prescribed self-care behaviors (Shrivastava et.al. 2013) largely remains the same. These self-care behaviors emphasize healthy eating, physical activity, monitoring blood sugar, compliance to medication, problem-solving skills, healthy coping skills and, risk-reduction behavior.

To achieve a more diversified and deeper understanding of the caregiving context we developed an interview question schedule based on our early set of broad research questions to investigate the specifics of care giving in a set of familial social contexts. Two authors of this paper conducted interviews mainly in the home setting of caregiving. Each interview lasted for 60 to 90 minutes. All interviews were recorded and transcribed. The interviews and prototyping iSwear took a duration of 3 months, which was followed by a month of the iSwear pilot study.