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Lack of support to the family when the children are affected by cancer

If a child affected by cancer, the whole family affected. The news means a drastic change in life. From the initial diagnosis until treatment ends is almost always a strong concern and anxiety.

One of those who have closely experienced the shortcomings of the aid to families where a child affected by cancer of the Carolina Sahlberg from Örebro. She says that the medical care after his son Viktor had a tumor in the back worked well.

– But in other respects the family was left to his fate. We got to meet with a counselor to discuss some practical things, but no one offered us the opportunity to meet with a psychologist or psychotherapist, " says Carolina.

a support as a parent, both during and after his treatment – but found nothing. However, she and her husband during the entire you are not complete a lot of forms and questionnaires about her son's illness. Materials that could then be used in research.

– When even the children are affected by cancer turned over the entire existence of ever. You can only see forward a few hours, the worry and the anxiety around whether or not the child will survive is so strong. In this situation, it is important to have a functioning psycho-social support, continues Carolina.

for several years now, the Swedish childhood cancer foundation recognised that psychosocial support is not working as it should. The differences between the different parts of the country and between different hospitals is also large.

the Shortcomings have been highlighted in the surveys to the families that we have completed since 2012, and in the various studies we have presented. Now we thought it was high time to make a change to improve the situation, " says Yvonne Nordlind at the children's cancer foundation.

discussion support via Skype. The target group is families with children affected by brain tumor and where the processing is completed or where the child suffered a relapse. This samtalsstödet has been running since February of this year.

– We have already noticed a positive effect. A first evaluation shows that several children had fallen between the cracks of the health care follow-up, " says Yvonne Nordlind, who is head of the Swedish childhood cancer foundation title Advice and support.

If the results are as it seems we will probably go ahead even with the other cancers than brain tumors.

She tells the story of a boy who after having been completed and printed, and returned to the school. But where was the problem.

" He got behind in schoolwork and showed aggressive tendencies – but got no help.

Via Skype could a counselor who is also trained as a psychotherapist at the first call, give some support and help. Since the family was slussad to the right body in the patient's home county and a contact was made also with the doctor who treated the boy.

"We see this as a first test and if the results are as it seems we will probably go ahead even with the other cancers than brain tumors," continues Yvonne Nordlind.

in the Swedish childhood cancer foundation's new venture is about to take up a vårdmodell for an equivalent level of psychosocial care across the country. The aid shall no longer be depending on where you live and to which hospital the child will.

the Work to develop the model will be done in coordination with barncancervården. It should hopefully start in the autumn, and initially funded by the Swedish childhood cancer foundation.

" In the long term, we want the regions and the county councils take over the funding. It needed a new way of working where staff in the care sector get the opportunity to see the whole child and the affected family. Only then does it work psycho-social care, points out Yvonne Nordlind.

Carolina Daley, left, and Yvonne Nordlind. Photo: Private and Magnus Shine

in the Autumn of 2014 would son Viktor to begin in their preschool class. But then several months back, he was cold all the time, and also complained that he had run hard and that it hurt in the back. The parents sought help several times, but the care could not give any answer.

So was Viktor fever went down, and one day he collapsed paralyzed on the floor at home in the living room. It turned out he had a tumor in his back that pressed on the nerves in the back. After a five-hour operation managed the doctors remove the tumor. Then followed the treatment with radiation and cytostatic drugs.

When Viktor after a year was discharged tried Carolina working again, but it was not. She had high blood pressure and a variety of other physical symptoms.

– During the whole viktor's illness I got to be a vårdkoordinator, in order to keep track of what's going to happen and when. It created pressure and anxiety, which in turn led to stress.

" People react differently, but when a child becomes difficult sick puts himself to the side. But in the end time reality catches up. All the worry and anxiety flattens over. Many parents to cancer, children suffer post-traumatic stress disorder when everyday life returns, says Carolina Sahlberg, who himself works as a psychologist in the child and youth psychiatry.

she had the theoretical knowledge of how a human being reacts in a crisis, but it did not help her when the uncertainty about Viktor would survive was the strongest.

A study shows that it takes up to seven years for a parent to get back to full time work after the child received a diagnosis of cancer.

Why then is the aid to the families struck by cancer so poorly? the Yvonne Nordlind at the children's cancer foundation responds that it's often about lack of resources, but also about a medical focus, overall, is a priority in health care.

– Both children and parents at risk of anxiety and mental ill-health alongside concerns over how the treatment should work. For the parents it can lead to long and costly sick leave.

A study from the university of Gothenburg funded by the Swedish childhood cancer foundation shows that it takes up to seven years for a parent to get back to full time work after the child received a diagnosis of cancer. Another survey at the same university shows that the staff at the country's barncancercentrum not have enough time to provide a desired psychosocial care to cancer kids, siblings and parents.

Yvonne Nordlind want to put in the gaps in support for people with cancer children and their families in a larger context. In recent years, there have been more and more reports of mental ill-health is increasing among young people and adults in Sweden.

– Here we are talking now about a particularly vulnerable group who need a lot of support. It is high time that something concrete is being done to improve the situation.

in the school, but he has chronic pain in the back and it goes out over the performance both in school and at home. Mother Carolina wishes to the whole family from the outset have received help to deal with the whole situation.

She works in day volunteer as a contact person for the Swedish childhood cancer foundation in Örebro. She has also taken the initiative to föräldraträffar and children's activities for families with a child affected by cancer.

– To meet other parents is a way to process what happened and get to exchange experiences with others in the same situation.

Photo: Frida Hedberg

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