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Levels of Trust & Assurance in Caregiving
Caregiving goes beyond just physical and practical support as chronic patients seek consistent and continuous emotional support. We found that both filial and conjugal caregivers were involved in providing emotional support along with lower trajectory work [Ref] . It was more evident in case of remote caregiving. One of the caregivers mentioned, “I remember, my sister who is staying in US, was very busy with something and was not responding to her calls. My mother created a Facebook and twitter account all by herself and followed both of us. – (U02/FR)”. Being remote the patient was seeking assurance, and from our understanding every caregiver wanted some kind of assurance consistently about the patient’s well-being. In one case, a conjugal caregiver mentioned, “We take all kinds of precautions. But biggest challenge in monitoring is to know, if we are doing enough and we are going good. – (U15/CI).” This was her major pain point. Perhaps seeking assurance is mutual.
In the case of filial caregiving a common question that every caregiver is concerned with is, “are we doing enough”. Filial caregivers seem to need assurance on their caregiving performance with an over-emphasis on the patient’s speedy recovery. In one instance a caregiver mentioned, “She [mother] first says whether she is doing good or not, I feel that is kind of very minimal information. We need to do something more. – (U03/FR)”. This particular case was a remote caregiver with less awareness about the patient’s adherence to medication. In another case a filial in-person caregiver mentioned, “for an emergency we are given a common number but not the doctor’s personal number. For some case I would want to know if I did anything wrong – (U06/FI)”. He wanted to remain assured in this case with the doctor’s personal number. This indicates how filial caregivers continuously seek professional support and are open to discuss their shortcomings.
Caregivers both filial and conjugal are aware of the patient’s getting around health and medication routines, sometimes even lying about their medical compliance. Caregivers ensure they have complete knowledge about the patient’s condition and doctor’s prescriptions and recommendations. In one instance a conjugal caregiver had her house help accompany her husband for a regular health checkup session. She insisted to know what the doctor had mentioned about her husband’s condition in detail. We found more examples of vigilant arrangements in the case of filial caregiving scenarios. In one instance an FR caregiver was doubtful whether his parents were taking enough care, and thought her remoteness was a limitation. She mentioned, “Not really, I thought that they are taking care of themselves. They have also told me that, but I do not know what is going on behind the scenes. – (U02/FR)”. Many filial caregivers mentioned about the need of continuous monitoring. Such as, “Other than walking and physical activities, food is a big change. But right now we don’t have any means to monitor. – (U12/FR) “. Apparently an in-person filial caregiver confronted his father for smoking under cover. We found multiple such anecdotes of conflict in the case of filial caregiving. This indicates less trust and a stressed exchange in the filial care-giving situation.
Higher levels of patient-caregiver trust were found in apparently all the cases of conjugal caregivers. It is often due to the lack of surveillance/supervision in care or vigilance arrangements that leads to the patient’s non-adherence. We observed a caregiver often times is aware of the workarounds patients indulge in. A caregiver mentioned, “I know he goes out and eats Samosas (fried snack). At least he is not hiding that from me. – (U15/CI)”. This acceptance revisits the aspect of experience in work trajectory theory. With experience the lower trajectory work becomes a part and parcel of caregivers’ lifestyles. It’s the specific or elaborate care activity or higher trajectory work (such as a newly prescribed injection) which are performed with a conscious effort.
However, the same is not true in the case of a filial caregiving scenario. In almost all the cases we found filial caregivers to be very particular and vigilant about patient adherence to prescribed heath procedures. A caregiver mentioned, “I accompany papa all the time, whenever he goes out to the neighborhood market. – (U06/FI)”. Filial caregivers go that extra mile, being conscious to gain caregiving experience. This points to filial caregivers seeking higher assurance on caregiving performance as compared to conjugal caregivers. To cite an extreme case, a remote caregiver moved back to live with his parents: “I was constantly worrying about getting reassured… about their [parents] medical habits and compliance…”
Both patients and caregivers want assurance in whatever ways, small or elaborate, about each other’s whereabouts and are seeking to integrate them into their everyday rhythms and practices. But filial and particularly remote caregivers externalized it as a pain point. Both filial and conjugal caregivers deal with it through specific strategies, such as checking the pill inventory or tracker, getting vigilant help from neighbors or the house help. Conjugal caregivers, on the other hand, with higher levels of trust, often confront loopholes in vigilance arrangements or non-adherence by patients. In cases of filial care giving, similar situations lead to situations of conflict and resistance with the patient.
Contextualizing Motivation & Persuasion for Perpetual Care and Assurance
The art of persuasion in care management is an immersive and embedded contextual phenomenon; not only is it reliant on the caregiver-patient relationship but in multiple relationships within the eco-system of care. A powerful example is one we derived from insights studying contextual cues and the consequent strategies caregivers use to gain trust and thereby persuade the patient to adopt care. Caregivers make that extra effort to motivate the patient to adhere to the wellness regimen. We found filial caregivers applying different strategies to persuade the patient. Such as, “Making sure that harmonium [an accordion based organ commonly used in India] is accessible to her. She could sit and practice it, on musical scales. So trying to distract her from her illness. – (U04/FI)”. In another instance, one filial caregiver used to take her mother to a particular vegetable store so that she would walk that extra distance daily. Interestingly a filial caregiver had placed a measuring cup at home so that the renal disorder patient would have a better understanding of the quantity of the water intake. The caregiver placed the measuring cup at strategic locations at home and always added ice to water for a feeling of drinking more water than what was consumed.
Role Playing and Role Reversals
The roles and the ensuing dynamic between caregivers in the course of care practices, the nature of trust built in the course of caregiving, and evolution of persuasive practices to comply with CDM/healthcare by the patient are vital to understand for designers and technologists.
We observed that in filial caregiving, parents found it challenging to accept their children as caregiver. In many cases these role reversals are gradual. But in cases of an acute episode and the chronic condition thereafter, such role reversals often happen suddenly and the relationships remains never like before. The sudden change of roles brings about defiance in accepting care from children. We found multiple anecdotes of deceiving about medicine and health checkup activities during our interviews. These lead to arguments and conflicts between caregiver and the patient. Moreover constant nudging activity from filial caregivers led to patient self-reliance issues. A filial caregiver mentioned, “She [patient] has been a caregiver for everybody and now the roles are being exchanged. I hope it doesn’t reaches to a point where I have to do something more than what I am doing right now. – (U04/FI)”. In another instance another filial caregiver mentioned, “They [parents] didn’t want to bother me, that’s what they are thinking. They are thinking that I am having a good life, studying. They think that I should not be bothered with all these things. – (U10/FR)”. This indicates something more than just an issue of role reversal. It was observed that patients suffer from a loss of self-reliance and often consider themselves to be a burden for their children who are now the caregivers. Thus, they often mask or become deceptive about their condition. Role reversals were specific to the filial arrangements of care giving, possibly arising from the parenting culture and age-specific cultural protocols in Indian communities. This makes for a fascinating future research proposal in the domain of familial health care practices.
FINDINGS WITH THE ISWEAR DATA ECOSYSTEM
Initially we faced challenges to recruit families with filial or conjugal caregivers for their kin suffering from chronic illness, and who could be monitored consistently for the running time of the study. iSwear brought a determinant shift in caregiving activity and dialogues of persuasion. All three families acknowledged the usefulness of such a system but duration of one week was not enough to illustrate and quantify the desired outcome. Product design and usability of the wearable was also a limiting factor to adoption but we had valuable inputs on the effectiveness of communication and reporting protocols during this study. We present some of the initial observations in the following section.
iSwear was originally sending messages only to the caregivers. All three users, who are patients in the familial caregiving relationship, suggested that they also receive the message being sent to caregivers. [There was a feedback mechanism in the form of a beep when an SMS was sent from iSwear to the caregiver who was remote at that time] The wearers of iSwear, wanted to make sure that the correct information was being sent to caregivers. Apparently they indicated towards the absence of any engagement in wearing the device. A patient asked, “How would I know if the sms is not annoying my wife? Can I do something about it? – (CI)”. Both conjugal partners were seeking parity and transparency in communication. Retaining the patient’s independence and a sense of comfort while being monitored regularly came out as an important concern. A patient mentioned, “Why sms her (caregiver) all the small things”.
Patient monitoring messages did not lead to any significant number of notification responses from the caregivers. It framed conversations in the evening when the caregiver and user got together. In such situations the caregiver would ask questions in a probing way, even though iSwear did not explicitly report the information, “Why did you have tea twice at the office? I got to know about it from the message…– (CI)”. She asked this question being unsure of what her husband had in the office. iSwear gave her a context informed cue but didn’t give her more factual information. It tuned out the patient-husband had tea just once, and the other sms was a false positive. However, the SMS helped initiate such dialogue exchanges. The caregivers were also not able to make complete sense of the information from iSwear; hence, did not know how to respond to it. One of the caregivers (CI) was excited to receive SMS from iSwear but did not know what it signified or what to do as a follow up. For example, knowing the number of steps her husband had walked confused the caregiver as to whether it was a good practice since this was not on her list of patient monitoring activity. She indicated towards the need of more actionable information from the caregiver’s perspective. She asked, “This is really good. But when should I call him? – (CI)”. This indicated the need for iSwear action prompts instead of showing factual patient information.
Challenges in the Field
In this section, we attempt to elaborate the tensions that ensue when an ethnographer and a designer co-habit in the designing of a care giving system. The designer is more interested in evaluating the system while the ethnographer is loathe to control any in-situ activity to service a design implication. Both authors found a ‘mean’ in balancing and triangulating the study of call logs from iSwear and the personal interviews during the pilot. The three patients identified for the preliminary user study were not facing any kind of acute mobility constraints and were normal in their day-to-day activities. Thus patients would go out of their homes for business-as-usual type of activities other than their morning or evening walk. In one case the user was checked at the entrance of a shopping mall by the security guard because the appearance of iSwear, in his opinion, resembled a bomb-triggering device. The user refrained from wearing the device while going out of his home for the rest of the week. Here, we understand the importance of form and appearance of the device and how an improved and non-intrusive form would have helped the study.
Another important fact to note is that the caregivers were life partners or children of the patient with a long history of domestic co-habitation. This informed their everyday communication practices: phone calls were made during certain times of the day or only on occasions that were deemed as warranting a call. Thus many messages sent during a particular point in time of the day were completely ignored by the caregiver. This also aligns to the fact that caregivers were mostly aware of the context in which the patient was. However, caregivers indicated the need for emergency notifications warranting immediate action.
Evenings were spent in discussing the day’s events especially those that involved health care practices. Families settle into a daily rhythm of communication practices that any system, seeking to mediate health monitoring, needs to take note of and even abstract design principles out of them.
DISCUSSIONS
Any system needs to be designed to take advantage of contextual awareness. Centralizing the role of a caregiver; accounting for the dynamics of role reversals; observing the contextual dynamics in multiple caregiving scenarios are some of the few key implications that can aid in designing for higher acceptance of monitoring systems. The nature and content of communication is of significant importance in such monitoring systems. In this section we discuss some of the open implications from our findings from ethnography and initial feedback from the preliminary field study. These questions and implications can be extended for the design of better CDM communication and wellness persuasion tools.
Accounting for Role Reversals
Our ethnography suggests that wellness and CDM systems should account for unforeseen and situational role reversals. While work of vigilance is important from a caregiver’s perspective, CDM systems should account for its gradual acceptance. This demands higher transparency in wellness monitoring systems and provision for diverse communication protocols, which might also involve auxiliary caregivers for patient monitoring.
Designing Assurance Mechanisms
An important aspect of caregiving is enabling a positive disposition in the patient condition as a result of the caregiving activity. Our ethnographic study suggests that caregivers are in need of regular updating of the patient’s wellbeing and activity. They require perpetual updates about food intake, medicine intake and physical activity, which need to be communicated if the caretaker is remote. A dedicated caregiver not only needs assurance but proof of efficacy for their caregiving activities. This is also a requirement for auxiliary caregivers who can evaluate themselves and receive assurance on their performance. This evaluation can be based on many factors like, monitoring patient progress on their health condition, knowledge about illness and skills in managing different trajectories of work. Caregivers could also collaborate and learn from professional caregivers who can not only augment skills but act as moderator or a caregiving coach. Wellness and CDM systems should tap into the basic needs of caregivers around this sense of assurance and achievement as a skilled person.
Enabling Multiple Persuasion Points
Our ethnographic study showed that even though there is typically one primary caregiver in the family, other members, sometimes neighbors, also play caregiving roles. In-person caregivers and remote caregivers have different contextual awareness. Remote caregivers would face challenges in evaluating patient health or wellness activity adherence. This may lead to a different dynamic of trust between these key actors in a caregiving context.
Similar differences may also occur in terms of closeness in a relationship. An in-person caregiver attracts more trust than a remote one. A caregiver from the family would be closer than a neighbor or a hired help. A more dynamic system could address the need for communicating a diverse set of information to various types of caregivers offering varying degrees of care. Wellness and CDM systems should account for difference in stakeholder roles and patient preferences. Effective and curated communication of information to many kinds of caregivers can make for a powerful persuasion strategy.