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The ethical side of technology: Value Based Design for Informal Caregivers Technologies

By Sofia Bastoni Published 29.11.2021

Informal caregivers are friends, neighbors, spouses, or family members who provide unpaid care for an ill or non-self-sufficient loved one. The range of duties caregivers usually help with is very broad: from emotional to physical support, grooming, managing finances, appointments and much more. Because of their commitment and help, informal caregivers are an essential pillar to healthcare systems all over the world. However, caregiver duties are often so demanding in term of time, physical and emotional energy that the term “caregiving burden” was coined.

Informal caregivers take unpaid care for their non-self-sufficient loved ones. This activity can be burdening and demanding

Luckily, there are many ways to support caregivers on a personal, emotional but also practical level. Some initiatives are aimed at alleviating caregivers’ burden, fatigue, or psychological symptoms. Others help them with more practical tasks. Sometimes these activities are facilitated by the use of technologies. Some examples of technologies that facilitate the “practical side” of caregiving include monitoring devices, which allow the caregivers to know the whereabouts of their loved ones and their status of safety. Caregivers can also make use of sensory systems that let them know when falling behaviors or other signals of potential danger occur in their loved ones’ home. Furthermore, all kinds of alarms, reminders, and digital agendas are now developed to take care of the routinary aspects of care, to keep track of doctors’ appointments, to store medical files and much more.
To help with the psychological side of the caregiving burden, a lot of digital support options are also available. For example, caregivers can make use of virtual support groups with peers, technology-mediated therapy sessions, and also interventions which are aimed at re-building meaning and self-perception in the caregiving role. For example audio and video story-telling seems to be a promising way to encourage caregivers to take ownership of their role. By (re)telling and re-writing their stories, caregivers work on their way of building personal experience in their minds. It’s ultimate goal is building of new and less painful narrative of the self within the caregiving role.

While scientists and researchers developing technologies to support caregivers have their best interest at heart, designing and practically using technologies in real life are pretty different things. For example, a lot of those technologies end up abandoned or used in a way that was not initially intended. Emotional pain, trauma or burden, are delicate subjects, often accompanied by stigma. On top of that, it’s necessary to account for the resistance that could come with using technologies, especially when dealing with such sensitive topics. Just like art, technology both represents and shapes the society of its time. For example, having thousands of different apps on your phone that deliver your food, mail, clothes and book represents a shift toward a more “at fingers reach” buying behavior. At the same time, it also promotes and encourages it. Since technology plays such a big role in our lives already, it becomes even more relevant to consider these aspects when sensitive topics such as caregivers’ wellbeing and mental health are involved.

Designing technology, however, brings along ethical and practical considerations which cannot be left unaddressed, as technology both mirrors and shapes society

This is why, scientists in the field of eMental-health are exploring new frontiers such as Value Sensitive design or Value-Based Design. The concept of value is often related to the price of an object. In a more psychological, philosophical and ethical sense, the term values stands for what is important to people: core beliefs and principals which remain relatively stable during the life span. Some examples of values include: loyalty, friendship, freedom, earnestness, compassion et cetera.

One possible way to design technology ethically is to design technologies according to values. A value is something that is considered to be important for a person or a group of people. In the caregiving context, examples of values are autonomy and privacy

The main idea behind this approach is that, once a value is identified as key in a specific target group or within a specific context, that value is taken into consideration when developing and materially realizing technological tools to support said group or to serve said context. For example, within the specific context of caregiving, some examples of relevant values are: family, time, dignity, autonomy, privacy, or health.

Value Sensitive and Value Based Design approaches are relatively new, their aim is ambitious and their object of study is very complex. In fact, there are a lot of open questions. What is a value? Which values are especially relevant for which context? And how can values be measured? Do values change over time? More recent approaches such as Values that Matter are considering a mediation effect between technologies and values. According to this perspective, technology should indeed be designed according to values. However, the interaction between technologies and user also modifies the value itself, creating much more unpredictable scenarios.

Caregivers do not only support their family members or loved ones in a difficult time of their lives, they also reach lengths healthcare systems could not possibly reach. Given the complexity of their role, they suffer from great consequences which can be tackled with the help of supportive technologies. When designing technology, for mental health and wellbeing especially, it is essential to consider its ethical and moral implications. Making sure that there is a consistent overlap between the values that are important to informal caregivers and the technologies they can use can be a first step to do so.

About the author

I am Sofia Bastoni, a psychologist with an interest in implementation of eHealth to support informal care, Marie Skłodowska-Curie ITN fellow and PhD student at the University of Twente.

Want to connect? Find me on Twitter @BastoniSofia, LinkedIn: https://www.linkedin.com/in/sofiabastoni/, or send me an email: s.bastoni@utwente.nl.

Recommended reading

Friedman, B., Kahn, P. H., Borning, A., & Huldtgren, A. (2013). Value sensitive design and information systems. In Early engagement and new technologies: Opening up the laboratory (pp. 55-95). Springer, Dordrecht.

Petrovic, M., & Gaggioli, A. (2021). The potential of transformative video design for improving caregiver’s wellbeing. Health Psychology Open, 8(1), 20551029211009098.

van Gemert-Pijnen, L., Kelders, S. M., Kip, H., & Sanderman, R. (Eds.). (2018). eHealth research, theory and development: a multi-disciplinary approach. Routledge.

Smits, M., Bredie, B., van Goor, H., & Verbeek, P. P. (2019, November). Values that Matter: Mediation theory and Design for Values. In Academy for Design Innovation Management Conference 2019: Research perspectives in the era of Transformations (pp. 396-407). Academy for Design Innovation Management.

Cruz-Martínez RR, Wentzel J, Bente BE, Sanderman R, van Gemert-Pijnen JE. Towards Value Sensitive Design of eHealth Technologies to Support Self-Management of Cardiovascular Diseases: Content Analysis. JMIR Cardio. 03/10/2021:31985 (forthcoming/in press)