Information overload is always a problem for patients at hospitals, especially as medical diagnoses, treatments, and follow up care become more complicated. Having to deal with information is hard enough when you’re the patient, but perhaps a tougher situation is when the patient is a young child and you’re their parent or caregiver.
My masters thesis project aimed to study both the emotional journey of parents with children at the Children’s Hospital of Pittsburgh (CHP) as well as the current methods for information delivery, and to develop an enhanced system or service that will hopefully improve the current methods of family education.
I started my exploratory research by talking to CHP staff. I focused on parents staying at the new 7IMC unit, an intermediary care unit housing children that were not critical enough to stay in ICU but still needed constant monitoring. I also talked to various parents who had children staying at 7IMC. Speaking to staff and families allowed me to learn a great deal about the experience.
–information is not given to you unless it is critical, or unless you ask
–first visits to the hospital are overwhelming both emotionally, and with the overload of information
–parents need to seek out a lot of information on their own
–parents never remember to ask the questions they want or need when the doctor is there
–parents can’t always remember verbal information
–there are too many staff to interact with; “you don’t remember who you’ve asked what to”
Common positive aspects
–keeping journals was very helpful for parents who did this
–learning and knowing medical terms helps
–most of the nursing staff were friendly and helpful
–guidance and friendliness from social workers
What parents thought would help
–more connection with staff
–knowing about other parents’ experiences
–a more consistent experience
–being made aware of all resources and information
Following the research, I synthesized the findings and distilled them into three concept models (see slideshow above): one showing the current overall journey, one showing the ideal journey, and one showing the overall values that are important to parents during their stay at CHP. These models helped me think about the experience as a whole, and provided me with guidance towards generating concepts.
I generated concept after concept, and brought these back to some of the families at CHP. I created some participatory design activities for families so they could feel included in the design of a solution.
My final solution, which I called directCare, is a service that comprises of six different components:
A welcome kit given to parents upon arrival, containing important information (e.g., contact numbers, location of hospital facilities). For parents whose children require an overnight stay, the kit also includes age-appropriate items for the child (e.g., a teddy bear, or blanket). It also includes a disposable camera; I heard over and over again from parents that despite the situation, there are positive aspects of hospital stays and most have regretted not taking the time to document these.
A hospital-lent touchscreen mobile device to help keep parents connected to their child and child’s care even when they need to be away from the hospital
A touchscreen in-room display in every child’s room for parents to access information (child updates, current course of action, etc).
A removable whiteboard in every child’s room for parents to be more empowered about their child’s care. The board is used as a communal communication space; with all the hospital staff shift changes that happen, it helps for parents to have a central and visible place for important information.
directCare|farewell: a gift given to parents upon a child’s discharge. Contains photos taken during the stay, as well as some wallet cards (follow-up appointments, etc).
A website parents can visit containing all information that was recorded during the child’s stay. Serves as information for follow-up care and for future reference.