There are a few additional models that have been uncovered during the ethnographic research phase. Gary will take a few minutes to run through these.
I want to show you these but they are not necessarily new to you.
From the research we think of this as two dots on a line. This side is the system and the friction it represents. On the other side is the family and the engagement they have. The further away these dots are the larger the gap is. I have a little more detail about these.
System friction is a relationship between the time of the crisis and the system. The high acuity services have less friction than these other services.
Our respondents were more on the medical services side of things so their lives are a little easier. But the severe long term disabilities are up here.
What about the mild chronic conditions? They might be stuck with these things that are hard to access. They may perceive things to be worse than people with really acute problems perceive.
The bulk of this down here is controlled by what we would call the medical team. Things on the top are controlled by payors.
Stages of Experience
This is the stages of experience model and I want to add one thing. Where the resources available and what are the resources applied? There are a lot of strategies applied in different stages.
Instincts are prevalent in the early stage. They don't understand the 'rule out' approach of medicine.
People try to avoid being steamrolled here. They insert themselves into the decision making process.
The next challenge is anticipating what's coming.
It's all about getting plugged in at the new normal stage. If you aren't plugged in you don't get these resources.
In prep for transition the parents that get a handle on it earlier are more successful.
Family Interaction Profile
The next model is the family interaction profile.
There is a family that we would call vulnerable. They feel limited or incapacitated.
We have a group of families that are compliant. That don't ask too much. They just do what they are told.
Then we have the advocates. They realize they can use relationshiops to get things done. They realize there is a boundary there and they don't push too far.
Then we have the activist. They apply their skills to other people or the government.
Here's the bad news. The system is a squeaky wheel system.
We give more resources to the activists and less to the vulnerable.
We call this last model Hope. We think the most important emotion for parents is hope. It fuels activity. If you lose hope you lose a lot. Hope moves up and down but you hear people talk about it in many ways including talking about miracles. Hope can be built. Relationships give people hope. Resilience is a source of hope. Your ability to bounce back gives hope. Empowerment - having knowledge and skills empowers you to make decisions and you gain hope. It doesn't have to be a final outcome - it could be about tomorrow being a better day. The last one is faith.
The families we worked with had different profiles of these.
The big question is, "What is our role in supporting hope for families?" It's the emotion that gives them the drive to move forward. Sometimes we help that and sometimes we hurt that.