Translational Studies for Inclusive SocietySupport that Connects People to Other People/Society
Our image of health and “a patient”
When we imagine “health”, we picture both body and mind in a healthy state. When we take supplements or aim for a lifestyle we think will be good for our health, we do so with the intention of maintaining our health or preventing illness. Yearning to live our daily lives peacefully, in a state of health and free of illness, can be said to be a fundamental human desire. Of course, maintaining our health is an important consideration when we manage our lifestyle. An excessive focus on health or medicalization, however, can lead to a tendency to conclude that having an illness is a “bad/unhappy” thing, and a risk of unconsciously harming the human rights of people living with an illness or disability.
Life with illness: Psychology as something that “thick describes life”
Up to the present time I have been engaged in research on the quality of life (QOL) of people with intractable illnesses (“nambyosha”). Even among those described as “nambyosha” there are individual differences in their symptoms and the state of their illness. The problems each individual faces also vary. While some suffer from anxiety regarding their illness, others must deal with financial difficulties. There are also people who cannot participate well in society because the degree to which their illness is recognized is low.
These can be said to be problems only faced by “nambyosha”, but in this project we aim to approach the “life” of the person in question from a perspective of “life with illness” that is not included in the existing myth of health and image of a patient. One aspect of this is the evaluation of quality of life using “the Schedule for the Evaluation of Individual Quality of Life (SEIQOL)” and a theoretical examination of Patient Reported Outcomes (PROs).
SEIQOL is a method that has the person in question provides domains that are important to their own QOL and evaluate the latter accordingly, and has been described as a “self produced item QOL evaluation method”. QOL evaluation based on what the person in question says about their own experiences sheds light on the patient’s life “here and now”, and can dynamically address changes in life that accompany changes in illness. In addition, listening carefully to what a patient says about his or her own life can serve as a tool to facilitate communication between the person in question and doctors/caregivers, and at the same time it can also provide guidance in understanding patient needs and promoting appropriate intervention.
- A new approach to QOL evaluation – Japanese language SEIQOL-DW (http://seiqol.jp/)
Informational support for avoiding social isolation
Up until now I have talked about support that connects people to other people, but this time I would like to introduce support that connects people to society.
Contemporary society is in an era in which there is such an overabundance of information it can be described as a “flood”, and an era in which individuals can selectively pick up and discard information and in which obtaining good, high quality information is required. Following the 2011 Tohoku earthquake, the construction of an information network that will enable emergency and social support while protecting private information has become an important task. When the earthquake occurred I myself spent ten hours in a bullet train car stopped on an elevated track. What eased my anxiety in the midst of not knowing what had happened, my phone not working, and not being with anyone I knew, were Twitter and the radio. Through the radio playing in the train I learned about the disaster, and using Twitter’s timeline I was able to find information about evacuation points. This personal experience was a good example that illustrates how getting the information you need when you need it can itself be a form of support.
The potential for social support through an organic linking of information: an archive as a communication tool
The word “archive” is translated as “preservation library” in Japanese, and digital archives that are just that, preserving and making publically available precious cultural resources and works of art, are well known. This project, however, involves carrying out research focused on a “narrative archive” that collects and makes public/communicates what the people in question have said about their experiences. It takes a new approach to the individual, society and information (archives) from the perspective of an open system, and proposes the possibility of social support that, through the medium of this kind of archive, facilitates communication and an organic linking of information that connects individuals to society.
In particular, while making use of “web archives” such as bulletin boards and patient registries and “digital archives” that make narrative data visible, this project is conducting research focused mainly on the following three points.
The first is the potential, when an individual suffering from some kind of worry or anxiety is placed in an unstable or isolated situation, for information (archives) to provide multiple perspectives leading to a resolution of his or her concerns, and to promote activities that allow him or her to come into contact with and connect to the rest of society. The second is the potential for socially isolated individuals to connect to the rest of society by accessing information (archives) and sharing their own personal information. The third is the potential for communication to be promoted by vast amounts of linguistic data being organized in archives and providing feedback to relevant individuals. What is being considered is not only a change in the communication of those involved, but rather a change in the archive that is the medium of this communication itself.
While this project has only just begun, we are exploring the potential of the narrative archive as one form of support that facilitates connections between individuals who are in socially isolated circumstances or for whom life is difficult and other people/society.
Works Cited
- Fukuda, Mari (2012), Kuoriti obu raifu toha nanika? [What is quality of life?; クオリティ・オブ・ライフとはなにか？],
- Tatsuya Sato, Kosuke Wakabayashi, and Ayae Kido eds., Shakai to mukiau shinrigaku [Psychology face to face with society; 社会と向き合う心理学], Shinyosha.
Related projects
- Theme 1: Methodological Studies for Translational Research in Human Support The Utility of Narrative Archives as Social Support User Empowerment in Health and Welfare Services
