Geïntegreerd informatiesysteem: Voor ouders van een kind met kanker

Geïntegreerd informatiesysteem: Voor ouders van een kind met kanker

Van 't Hullenaar, V.A.

Goossens, R.H.M. (mentor)
Esser, P.E. (mentor)

Industrial Design Engineering

Industrial Design

Master specialisation Medisign

2012-05-25

This report describes the process of my final concept design named GIJS; an integrated information system for parents who have children diagnosed with cancer. The concept was designed for the future national child oncology centre (NKOC, Nederlands Kinder Oncologisch Centrum). The goal of the design is to improve the way in which information is provided to parents. Parents need information that is up-to-date regarding the illness and the state of affairs in the hospital. Also, the possibility to read information afterwards, which was given to parents orally, and the possibility to ask questions at any time will improve communication between parents and medical staff. A child who is diagnosed with cancer will be treated in an academic hospital and for less complex care they sometimes go to a local hospital. Treatment consists of outpatient appointments and admissions in the hospital. During the treatment there are many different disciplines involved. An academic hospital is partly an educational environment en therefor there is a constant flow of employees and students. The day-to-day structure of a hospital is often perceived as being chaotic by parents. Parent and child are often both present while receiving information. Information is provided in many different forms. Most of the time, the doctor explains and the nurse translates. Information is mostly one-way; the parent and child only receive the information. Due to lack of space, conversations that are private are sometimes conducted in a shared room or in the corridor. Especially when the treatment progresses for a longer time, the structure in providing information diminishes. Next to personalised information, the hospital also provides standardised information. This information is often managed in a top-down way and not up-to-date. A lot of ad-hoc information is processed as notes to keep parents, the child and employees informed. This information is not centrally controlled. Medical information on the child is stored in different electronic systems and paper documents, depending on the discipline. These systems are not user friendly, sometimes due to the usage by employees, sometimes due to the design of the system, but often due to a combination of these problems. Bottlenecks are often solved by employees in their own way and they see these problems as a ‘fact of life’, something which they don’t really think about. The chaotic day-to-day structure and all the meetings don’t contribute to transferring information in a good and clear way. Although it is the child who is ill, the parents have the need for information. Teenagers try to focus on the nice things in life instead of on the disease. The information to younger children is mostly about preparing them for the upcoming treatments. Because the parents have the need for information, they often go on the internet to find that information, even more because hospitals don’t provide medical information on their websites. The best way to provide information is to give the right information at the right place at the right time. The internet doesn’t comply with these aspects. This is the reason why I chose to focus on a digital information system which will try to comply as much as possible with these aspects. From the analysis and vision described above I designed the structure of a digital information system. After that I made a toolkit in which I describe how to provide information with this system. The information system runs on a smart tablet. You can take it anywhere and it can provide assistance when the user is talking to an employee of the hospital. The system is divided in 3 parts: a personal database, a general hospital database and a community database. The latter serves as a platform for different kinds of initiatives. The general hospital database is designed to prepare the parents for the stay in the hospital and practical issues. The personal database serves as a diary, agenda and other personal information. Only authorised people can access this database. The toolkit is a guideline, and it explains how to provide information in the best way possible. After designing the system I evaluated and tested it for one particular form of cancer; the neuroblastoma. The smart tablet I used was an iPad. The 2 parents with whom I tested the system were very enthusiastic about the design. To know if it will work in practice, more testing, research and design will be needed. I hope this will be the start of a digital (r)evolution in the hospital!

informatiesysteem
ouders
NKOC
kind
kanker

http://resolver.tudelft.nl/uuid:cfc99035-6e25-4ceb-b73a-abed1e342861

Campus only

Student theses

master thesis

(c) 2012 Van 't Hullenaar, V.A.