KIST – Interview Sara



Picture from Sara

Wow… It was so happy to meet Sara in a Sunny day at the library today. She was so nice and gave me a pretty clear Introduction of KIST project, meanwhile, we analysed and visualised the complex relationship of stakeholders together.

The transcript detail is below:


Part of your local respite care centre will be communicating with your local doctors, such as GP( you go to see the surgery, not hospital doctor).The local respite also have an relationship with your school, and also have the relationship with your care teams and nurses. So, the local respite carers will have the whole relationship with the child school, because their job often pick them up, how was the day to day is there anything that happen. In term of medically, if they feel unwell, or direction education or anything like that or if they learn anything new and enjoy something, they will go back to the respite centre, and say you enjoy these school today, and we would do these tonight as well or we would do these at the weekend. So the local respite just like the bridge connecting school, GP, care teams and nurses together. These people have a close like stronger bone with each of these things, because they are caring for the child on a weekly or daily basis. With CHAS will only see them once or twice a year, or then decide cases when the child may die. The things is the staff of CHAS are often change, a lots of people work with CHAS for years, years… they do not know a lots of the children who come back, they have the relationship with the children and family, and that sense. But it not a day to day the constant relationship, so what would be helpful for CHAS was a way of keeping up to date while the child doesn’t there. So the local respite is quite constant relationship. The CHAS is over distance, in terms of you have to travel to CHAS and also time, because there is so much time between visit As children grow with there, have difficult condition like they can not speak themselves, they don’t sign with their hands. In term of like and dislike of children are changing, and even they are visiting at CHAS when they eight year old, they liked TV program as one thing, but when they come back when they are nine years old, they hate that. So simple things like that is really improved a child’d experience. If the CHAS can know more conditions of the child immediately from the stakeholders like Local Respite, and the people whose service was involved more, child can be helped put together their information and provide stronger stand of care. Because a lot to do is feeling safe and secure and welcome somewhere is knowing that somebody really understand what your needs are.


When children are born, their parents would attend them a appointment with the nurses n Midwifes, who is involved the early life care of the child, and they also the child department. They are major the normal way of the development are. On the other hand, for unnormal development child,  perhaps the child does not develop in a usual way, they will refaire the child to GP, the doctor will conduct some tests. The GP would be the first port of core to design these better perhaps any development mental problem with the child. If the GP thinks the child need the further assistance and they will refaire to the hospital, and hospital or refaire to the other services like local care or nursing, depending on the child’s need. These are the unnormal child process. The Local Respite Care work with the GP n Hospital to build a good level of care and structure model for the child. They are all about helping the child’s grow and as health as possible. Then to trying to help them have the best opportunities that they can’t. They would build the level of care base on the recommendation of the doctor and form any possible care, and family as well. So the Local Respite Care meet these people regularly, to make sure the level of care is good enough for any change they meet, or any different happen of the child’s life.

Actually these people( GP, Hospital and LRC) are invaluable, they understand the child’s situation. But of course because CHAS involves in these close network, they don’t know the regular information. So if the CHAS can know the situation of the child delivering from GP, Hospital n LRC, can help CHAS to provide better care, specially for a child not enough to come visit by themselves, them can not vocabulary communicate, indicate what they want. So CHAS could look at these information our see.

Because the child have some disease, they can not communicate and move, they need different kinds of cares. On different levels, they need like medical(physical needs like to help them relax); Personal(they like or dislike, they don’t sleep well and they ill next day), the information maybe from the family, friends , home also respite local care team, the spend a lot of time with the children, they not just about caring for them, but is about doing activities with them, going to the cinema, taking them swimming, walk ; Social as well,

So the information come from family, school and extra curricular groups as well – basically it means activities groups( could be exercise or craft activities), it is not to do with school, but involving social learning and education. they enjoy doing with other children, even they can’t participate in the exercise or play games, but maybe they like to be involved and shared the ex in some ways.


In terms of the medical,  a hospital doctor of high level of medical knowledge, they would be a couple of years to know the medical things about the child. The care team CHAS would necessary need to know all of the medical things, they know about the child, but the staff will need to know if the child just been in the hospital, what kinds of PG they have, if they affect the care they have, perhaps they not appreciate on their stomach, so they need to know that the needs to clean everyday, what do they do, do they phone the GP immediately, do they get a alarming or go straight to hospital, so they need to know what the protocol is, keep in everybody in form because everything has not cause effect. So this is the immediate network.

So the staff need to understand the child’s condition clearly and in time. If some conditions of the child change, they need to know how to contact the relative staff, but the problem is do they need to call the GP or the hospital. So they need to know what the protocol is to keep everybody of the stakeholders inform, because everything is no call effective.

It is interesting that the relationship network is not just one child and their family, it is about how they learn form other children and other families.

There would different children com from different communities coming to CHAS together at one time, so they would be all together at CHAS, and CHAS would say would you like to watch movie together? Some the children would enjoy the movie, but some not. It is all about making sure they have a wider social group as well, they would learn a lot of vital lessons form others. This is the same for the family, they ca share ex and understanding, it is about empathy.


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