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Annual report and review 2018

Impact report

We have more work to do to reach our vision. But we make a difference every day

The Swedish Childhood Cancer Fund’s impact report serves as a scorecard for how we run and evaluate our operations. We work with concrete, measurable impact goals, structured according to priority problem areas that we want and need to address. Together, they contribute to a single whole that will help us to eradicate childhood cancer.

In the 2018 review of the Swedish Childhood Cancer Fund, we list several of the central issues in our impact report. The following sections will give you a deeper understanding of who we are and what we want to achieve, how we organise our work and how we strategically prioritise our initiatives in the framework of our missions. You can also read more about the capacity and knowledge we use to make a difference.

Thus, this impact report focuses on how we measure and follow up the progress made in our operations, and what we have achieved so far. For us, and for many other organisations that combat complex diseases, it is a challenge to address anything other than our vision – to eradicate childhood cancer. At the same time, we at the Swedish Childhood Cancer Fund strive to ensure that each individual initiative along the way is followed up and evaluated. We do this continuously and systematically, which is described in our review as well as this impact report.

All members of the Swedish Fundraising Council (FRII) annually publish an impact report in which the organisations describe the path they are following to achieve their objectives, i.e. the processes forming the basis of changes and how far they have come in achieving their stated goals.

The FRII has an established structure to ensure the quality of the work of fundraising organisations, which we in the Swedish Childhood Cancer Fund follow. These questions form the basis of how we measure and follow up our impact and performance.

  • What the Swedish Childhood Cancer Fund wants to achieve
  • The organisational context we are active in
  • The strategies we use to achieve our goals
  • The capacity and knowledge we have to achieve our goals
  • How we at the Swedish Childhood Cancer Fund know we are making progress
  • What we have achieved so far

Read more about the FRII’s quality code for fundraising organisations.

Concrete problem areas allow us to measure impact

We pursue the fight against childhood cancer by addressing clear, concrete problems. This is an important way for the Swedish Childhood Cancer Fund to continuously steer and measure the results of our work. It is also our way of making a real difference where it is needed most. By clarifying five problem areas, we can make life easier step-by-step for children and families dealing with cancer.

The problem areas for which we actively work to find solutions cover a fairly broad spectrum. This is a strength, because it allows us to muster our forces and focus initiatives involving several parts of our organisation. At the same time, it demands follow-up and assessment, so we can confirm that our efforts are creating the necessary lasting impact.

Our five identified problem areas are:

The Swedish Childhood Cancer Fund’s impact report is structured based on how we approach and meet the challenges in each problem area. The following sections contain a description of the problem and a motivation of its urgency, our approach to best addressing the problem, and activities that have been conducted to solve the problem. They also contain links, sources and evaluation results of completed activities.



More research into childhood cancer is needed

Through calls for proposals for project grants and research positions, the Swedish Childhood Cancer Fund contributes to funding research and giving Swedish researchers the long-term support that is necessary to save more children.

The Swedish Childhood Cancer Fund finances both targeted and basic research projects to cure sick children and to give them a better life both during and after treatment. That is why the research projects that the Swedish Childhood Cancer Fund finances focus on several areas, from developing tomorrow’s targeted therapies, cancer-destroying killer cells or molecules, to improving treatment protocols and providing opportunities for better psychological care during and after treatment.

By funding clinical research, the Swedish Childhood Cancer Fund helps to find new and better methods that produce fewer side effects and complications and save more children. We have also announced funds for clinical studies, implementation and care planning grants, as well as appointed a reference group consisting of pharmaceutical companies that are working to create better conditions for the development of paediatric cancer medicines.

Paediatric or childhood cancer is a collective term for many different diagnoses, some of which can be extremely uncommon. This means that researchers must work together to draw reliable conclusions and develop new treatment methods for all of these diagnoses. With the Swedish Childhood Cancer Fund’s help, researchers and clinics can work together both nationally and internationally, for example through networks that assess the current treatments and develop new treatment protocols. This facilitates and contributes to greater knowledge and skill among Sweden’s care staff, all to ensure that Swedish children have access to the latest progress in cancer research.

Calls for proposals for project grants and research positions


  • The Swedish Childhood Cancer Fund supports research through calls for proposals for research project grants and research positions.
  • The Swedish Childhood Cancer Fund has given extensive support to a major international research project aiming to improve the treatment protocol for acute myeloid leukaemia (AML). The project, which is fully integrated in childhood cancer care in Sweden, started in 2013 and is managed from Sweden. The research results are essential for developing the treatment and improving the prognosis of children with AML.
  • The Swedish Childhood Cancer Fund has supported research that involves individualising the treatment of acute lymphoblastic leukaemia (ALL), ensuring better care. By analysing the concentration of the medicines in the cells, the dosage can be tailored for each individual child, thus increasing their chances of survival with fewer side effects.


Our calls for proposals for project grants and research positions have allowed more researchers to focus on childhood cancer research and more research projects to be carried out. The enhanced knowledge from various research projects and research fields has also contributed to the development of improved treatment methods and new medicines – and in the long run to increased survival rates and fewer complications among survivors.

The clearest evidence that progress is being made in childhood cancer research is the new survival figures. New statistics show that childhood cancer survivors have increased from 80 to 85 per cent over a five-year period.

Among the 10–15 children in Sweden who are diagnosed with AML each year, five-year survival has reached 78 per cent, compared with 63 per cent in 2010. The main reason for this is that doctors have got better at finding cancer cells that remain after treatment is completed. By refining a method called flow cytometry, in which each cell can be characterised with a laser, doctors can identify children who need more treatment. The method is part of the treatment protocol since 2013. Flow cytometry allows improved risk categorisation of patients by detecting tiny amounts of leukaemia cells in the bone marrow after treatment, which allows us to identify children with a high risk of relapse, who need further treatment such as stem cell transplant. Another change that has contributed to greater survival figures is a more intensive dose of chemotherapy in the beginning of the treatment, which has been shown to generate fewer relapses.

Survival rates for ALL have increased dramatically since the 1970s, from practically zero to nearly 94 per cent today. Successful research and clinical collaboration in paediatric oncology have led to such excellent survival rates in children that adult patients are now being treated with the paediatric protocol – and the adult survival rates have also increased.

Read more about CAR T-cells for treatment of ALL in the 2017 Childhood Cancer Report.


Five-year survival in per cent

Our goal is for every child to survive and receive support

Year falling ill Hodgkin’s lymphoma Acute lymphoblastic leukaemia Non-Hodgkin’s lymphoma Kidney tumours Brain tumours Neuroblastoma Bone tumours Muscle/connective tissue tumours Acute myeloid leukaemia
1955 22 2 16 10 18 10 18 20 2
1960 35 2 18 18 25 13 19 24 2
1965 50 2 20 28 33 18 20 28 2
1970 60 3 25 38 38 25 29 40 2
1975 72 30 32 61 40 30 38 45 2
1980 82 60 50 71 45 38 45 47 3
1985 94 75 76 84 68 45 50 53 20
1990 98 80 79 84 73 57 53 69 35
1995 97 87 82 90 76 62 74 79 59
2000 96 87 86 88 75 62 69 80 64
2005 97 87 85 83 78 73 74 78 61
2010 99 89 86 91 82 73 78 67 63
2015 100 94 91 97 81 73 78 79 78

Support for research infrastructure


  • To optimise the use of limited resources and contribute to faster results from research and development projects, we also provide support to infrastructure initiatives that allow research to be collected, stored and coordinated. One example is the National Paediatric Tumour Biobank, founded in 2013, which initially collected tissue from brain tumours and neuroblastoma. In 2015 the biobank was expanded to include all solid tumours and to conduct analyses that all researchers can access. Solid tumours make up 70 per cent of the over 300 cases of children diagnosed with cancer each year. The purpose of the National Paediatric Tumour Biobank is to make the most use of the valuable patient material and prevent wasteful use of the resources by different researchers doing the same analyses.
  • The Swedish Childhood Cancer Fund also finances the Swedish Childhood Cancer Database, a crucial infrastructure initiative for childhood cancer research. The database contains data on the development of the patients’ illness, their treatment and complications – all crucial information for conducting research and developing treatment protocols.


Without the National Paediatric Tumour Biobank, fewer research programmes in Sweden would have been possible because the samples would not have lasted for as many experiments and research projects. The number of samples collected is continuously growing (figure 7) and analyses have been done on many of the samples. Today, the National Paediatric Tumour Biobank is managing the tissue samples needed for four ongoing paediatric oncological treatment studies: BIOMEDE, INFORM, PNET5 and CMS.

The Childhood Cancer Database promotes childhood cancer research and makes it possible to develop new treatment methods and protocols. All treatment protocols in the Nordic region are dependent on the data provided by this database. For example, the database is crucial to the research that led to enhanced survival with AML.


Number of new patient cases in the National Paediatric Tumour Biobank

On 22 March 2018 there were 769 patient cases in the National Paediatric Tumour Biobank.

Year Number
2009–2012 34
2013 58
2014 89
2015 123
2016 192
2017 223
2018 247

Clinical research produces new treatments


  • To get research results to patients in the form of new medicines and treatments, the Swedish Childhood Cancer Fund added a special call for proposals in 2016 for clinical research projects. The goal was to increase clinical research into childhood cancer, which will directly impact treatment and nursing.
  • The Swedish Childhood Cancer Fund has increased the average level of grants in approved research projects.


A significant increase in funds granted to clinical research is allowing more research to benefit patients faster, with greater chances of achieving the research goals.


Granted to clinical trials

Research projects and positions (SEK)

  Granted to clinical trials
2001 23 005 453
2002 19 867 853
2003 24 647 450
2004 14 761 837
2005 21 134 321
2006 12 230 000
2007 8 927 380
2008 16 077 588
2009 20 804 557
2010 10 016 000
2011 17 640 870
2012 22 262 587
2013 19 822 722
2014 14 843 603
2015 21 395 248
2016 15 130 004
2017 34 033 666
2018 37 745 250



  • New knowledge that comes from research and development must be translated into new pharmaceuticals and treatment methods. And this requires clinical trials and drug tests that are adapted to children, as well as the implementation of new knowledge in clinical practice. Since 2016, the Swedish Childhood Cancer Fund has co-funded the Haematological Oncological Clinical Trials Unit (HOPE) in Stockholm for early clinical pharmaceutical trials. We also support a clinical trials department at Sahlgrenska University Hospital. Both departments are accredited by Innovative Therapies for Children with Cancer, ICTT.


New clinical trial units make it possible for children in Sweden to get access to new, innovative therapies. In the longer term, it will also make it possible to develop and launch more effective drugs that cure children with cancer. Several international pharmaceutical trials and register-based studies have already begun, including a phase II pharmaceutical study on pontine glioma (Biological Medicine for Diffuse Intrinsic Pontine Glioma Eradication, BIOMEDE).

In February 2016, the unit in Stockholm was accredited as Sweden’s first ITCC centre. ITCC, Innovative Therapies for Children with Cancer, is the European organisation for early clinical phase I/phase II trials for children with cancer. Financial support to two ITCC units (Stockholm and Gothenburg) opens the door to more children participating in clinical trials in Sweden instead of having to go abroad.

Care planning groups


  • The Swedish Childhood Cancer Fund’s support to care planning groups and treatment protocols is vital to the development of therapies. Sweden has several care planning groups that meet regularly to exchange experiences and help each other. The care planning groups are an important path between research and clinical practice, which leads to improved treatment protocols.


The new protocol has increased survival and reduced complications. The Swedish Childhood Cancer Fund contributed to NOPHO-ALL 2008 in several ways – providing funding for research, the ALL care planning group, the Childhood Cancer Database and the Nordic Society for Paediatric Haematology and Oncology, NOPHO. The Swedish Childhood Cancer Fund is also contributing to the new ALL treatment protocol, ALLTogether, a Europe-wide project that is just starting up.

All children in the Nordic region, Belgium, the Netherlands, Spain, Portugal, Israel and the Baltic states are treated according to NOPHO-AML 2012 – a major international research and treatment protocol for AML. The project is managed from Sweden with extensive support from the Swedish Childhood Cancer Fund.



Constant skills development is needed in the paediatric cancer field

All professional categories in the healthcare system who come into contact with children who have cancer must have the highest possible skill level. The Swedish Childhood Cancer Fund facilitates skills development in many ways, thus contributing to a sense of security among healthcare staff as well as children and their families.

A single training course is not enough; continuous skills development is vital to ensure that healthcare staff always have advanced, updated skills. Advanced skills lead to the staff feeling secure and appreciated, which contributes to lower staff turnover. This makes it extremely important to enhance skills, especially considering that there is currently a dearth of paediatric oncologists and specialist nurses.

The Swedish Childhood Cancer Fund identifies outcome indicators through discussions with healthcare professionals. Some of these indicators are enhanced security in the profession, improved patient care, staff and patient satisfaction, reduced staff turnover and enhanced participation in research and development projects, to name a few.

The advanced, specialised research of today also requires continuously updated knowledge. The Swedish Childhood Cancer Fund contributes to funding research in various ways so that Swedish childhood cancer researchers can use the best methods and technologies available.

Politicians and other decision makers are important in the battle against childhood cancer. This makes it important to contribute constructively to a positive development in all areas affecting childhood cancer. Here, too, the Swedish Childhood Cancer Fund contributes through shaping public opinion.

Training courses


  • Since 2006, the Swedish Childhood Cancer Fund has been conducting introductory courses and university courses in paediatric oncology for nurses.
  • In 2018, the Swedish Childhood Cancer Fund funded 9,280 hours of training in paediatric oncology for nurses, nurse’s aides and county medical officers.
  • The Swedish Childhood Cancer Fund has called for proposals for 4 grants for research/methodology studies at foreign institutions.
  • The Swedish Childhood Cancer Fund awarded SEK 2,441,199 in CPD grants to all paediatric oncology centres to distribute.
  • The Swedish Childhood Cancer Fund has funded 15 research positions for registrars since 2013.
  • The Swedish Childhood Cancer Fund has made 17 internships possible for healthcare professionals at regional hospitals.
  • The Swedish Childhood Cancer Fund has financed symposia, work meetings and network meetings.
  • The Swedish Childhood Cancer Fund has funded travel grants for conference trips where scientific findings are presented.


According to the evaluations, the completed training courses resulted in greater security, skills and knowledge among the nurses. Through this, they have contribute to improved nursing.

The results of a survey of section managers from the six paediatric oncology clinics in Sweden, conducted by the Swedish Childhood Cancer Fund in 2018, show that four of six paediatric oncology centres still have difficulty recruiting nurses. This is in part due to the fact that nurses seek better paid jobs with more regular hours. One consequence of this is that only one quarter of the nurses have further training in childhood cancer – a course that is provided and funded by the Swedish Childhood Cancer Fund today.

Quotes from nurses who took the course:

“Because I feel secure in my knowledge and know more, I convey certainty to the families”

“I dare to meet the families on their level”

“I dare to answer questions myself and know when I must refer them to a doctor”

“I have a better foundation to stand on, I dare to discuss things with the doctor and bring up the young patient’s perspective on things like pain alleviation”

“With all the knowledge I have gained in this course, I have taken on more responsibility and another leadership role in oncology”

Opinion shaping


  • The Swedish Childhood Cancer Fund provides expertise and makes suggestions to politicians and other decision-makers. Lack of staffing in paediatric cancer care is one of the issues that the Swedish Childhood Cancer Fund has worked for many years to build public opinion about.


The 2017 opinion drive “If I were Minister for Health and Social Affairs” resulted in a promise from the Social Democrats to allocate SEK 500 million to cancer care if they won the election, with childhood cancer as a priority area. In 2018, the Swedish Childhood Cancer Fund followed up that initiative with a drive called “The Minister’s Promise”. At a seminar during Almedalen Week, all governing parties were encouraged to sign the Minister for Health and Social Affairs’s promise to fund cancer care with a priority focus on paediatric cancer care, no matter what the results of the September elections were. The result was that the seven parliamentary parties in attendance (the Centre, Liberal, Moderate, Green, Christian Democrat, Social Democrat and Left Parties) agreed on a special initiative for paediatric cancer care in the coming term of office. And the earmarked funds were included in the budget that the Riksdag approved in December.



Lack of knowledge and understanding

All families affected by childhood cancer should be met with knowledge and understanding from those around them and the general public. The Swedish Childhood Cancer Fund was founded 40 years ago with the aim of spreading information about childhood cancer and creating public opinion. Disseminating information and shaping public opinion are still a primary focus, which also includes initiatives to boost knowledge and awareness. We work continuously to spread information and generate concern for our key issue: childhood cancer. As the degree of concern increases, so does people’s willingness to donate.

Information dissemination


  • The Swedish Childhood Cancer Fund distributes publications to target groups and interested parties in a variety of fields to boost awareness of childhood cancer. Through a variety of initiatives and information drives, the Swedish Childhood Cancer Fund has demonstrated what it is like to live with childhood cancer from several different perspectives. The message has been conveyed through external and internal channels as well as earned media. Examples of channels we have used include social media, direct marketing, television and outdoor campaigns, as well as editorial advertising. We are not afraid to talk about the difficult issues; we show what life is like for affected families in the bright and dark moments.
  • Our magazine Kids & Cancer, which comes out four times a year, aims to spread awareness of childhood cancers and to provide affected families with support in their everyday lives.


The most important impact of our communications is visible in the results of Kantar Sifo’s regular surveys.

The latest survey (2018) shows good development for the Swedish Childhood Cancer Fund. Awareness of the Swedish Childhood Cancer Fund reached 17 per cent unaided recall and 92 per cent aided recall. Unaided recall means that the interviewee responds without seeing a list of organisations.

The Swedish Childhood Cancer Fund’s social media channels have expanded significantly in recent years to become some of the most important channels for information dissemination today. In connection with the Childhood Cancer Gala, the Swedish Childhood Cancer Fund published a segment on 12-year-old Klara on its YouTube channel. As of the end of March 2019, the video had been viewed nearly one and a half million times, thus providing important information and knowledge to many people about pontine glioma and what it is like to be the family of a dying child. The segments we show at the gala live on in our social media and are therefore important in our dissemination of information and knowledge – just like Klara’s video.

It is important that our organisation is associated with quality and reliability. The information mission is vital to this, as sharing our knowledge is a way for us to increase the credibility of the Swedish Childhood Cancer Fund. The brand has developed favourably in recent years, finishing 2018 as the strongest brand in the non-profit sector in Sweden, with a Trust rating of 68 per cent (Doctors without Borders came in second at 65 per cent) in Kantar Sifo’s survey of the target group, the Swedish general public aged 18–79.

Another way of measuring public awareness of childhood cancer is to look at people’s awareness of the most common cause of death of children in Sweden aged 1–14. In the 2018 survey, 33 per cent named cancer as the most common cause of death, which is a reduction compared with the previous year. The causes of death that increased in the same survey were suicide and drowning, which may be the result of an uptick in public discourse about mental illness and the hot summer.

Childhood cancer gala


  • Since 2015, the Swedish Childhood Cancer Fund has annually held the Childhood Cancer Gala – the Swedish Humour Prize. The gala airs on Kanal 5 and its main goal is to attract more Child Supporters (monthly donors), to provide information and raise awareness of childhood cancer and to create concern for our issues.


The Childhood Cancer Gala – the Swedish Humour Prize helps to enhance our fundraising activities and boost knowledge and awareness of childhood cancer. A survey conducted by Kantar Sifo in connection with the 2018 gala showed:

  • 83 per cent felt that the gala shows that there is hope. The corresponding figure in 2017 was 87 per cent.
  • 78 per cent felt that the gala was engaging. The corresponding figure in 2017 was 73 per cent.
  • 9 per cent felt that the gala had increased their interest in becoming a Child Supporter. The corresponding figure in 2017 was 18 per cent.

Number of new Child Supporters during the Childhood Cancer Gala

Year Number
2015 3789
2016 4904
2017 9550
2018 8000

Media relations


  • The Swedish Childhood Cancer Fund has proactively addressed the media to create awareness of childhood cancer, the situation of affected families and the need for support during and after cancer treatment.
  • Media relations and opinion shaping in owned and earned media to raise awareness of and concern for the Swedish Childhood Cancer Fund’s issues.


Indicators that we are increasing awareness for our issue and for the situation of affected families: According to a survey conducted by Retriever, a total of 4,753 articles were published about the Swedish Childhood Cancer Fund in Swedish media in 2018. The number of potential reader contacts (reach) was 293 million. The PR value of the publicity amounted to SEK 106 million. Ninety-eight per cent of all articles provided neutral publicity, while the proportion of strongly positively angled articles was 2 per cent.

Journalism award


  • Since 2006, the Swedish Childhood Cancer Fund bestows a journalism award to honour journalists who spotlight aspects of childhood cancer. We do this to inspire more people to take an interest in the issue. The reports are assessed based on the criteria content, comprehension, reliability and language.


The visibility of the Swedish Childhood Cancer Fund in the media has increased steadily for several years. The Swedish Childhood Cancer Fund journalism award is one contributing factor to this. Since 2014, we have visited the award winners to inform them of their prize, which has led to a number of reports/articles each year from the winning publications.

Another result is that we have continued contact with previous winners, which has led to them contacting us with queries about follow-up reports and advance information prior to the launch of the Childhood Cancer Report.



Difficulties in daily life for survivors of childhood cancer

Nearly 11,000 adults in Sweden have had cancer as children. About 7 of 10 survivors struggle with late complications after the disease and its treatment. For the past few years, the Swedish Childhood Cancer Fund has actively focused on adult survivors of childhood cancer through our Maxa Livet (Get the most out of life) concept. The Swedish Childhood Cancer Fund also awards grants to actors that initiate development and research projects in the field of long-term follow-up of the disease.

Maxa livet – for adult survivors of childhood cancer


  • Maxa Livet is a national programme for adult survivors of childhood cancer. The overall aim of the programme is to provide psychiatric, physical and psychosocial support and to enhance the quality of life of adults who survived childhood cancer. The focus is on enhancing the participants’ ability to see and take advantage of their full potential and to find their own motivation to build the life they want. With this in mind, the programme annually arranges several activities to meet the participants’ needs. Activities arranged in 2018 include health weekends, group therapy, motivational courses and job coaching.
  • The Swedish Childhood Cancer Fund also publishes a Maxa Livet magazine, which is aimed at adult survivors of childhood cancer. The magazine portrays the various life situations of survivors, including issues such as education, employment and relationships, and it provides concrete tips to survivors of childhood cancer. The magazine also targets government agencies, schools and politicians to raise awareness of the challenges that adult survivors of childhood cancer face.
  • Maxa Livet also arranges an annual conference in which adult survivors of childhood cancer get together and network, as well as listen to lectures on various subjects and situations that can give them new insights. The conference is an important forum for information on the assistance available through a variety of organisations and agencies, such as the Swedish Parasports Federation, the Swedish Public Employment Service, Novare Peritos and universities and technical colleges.
  • The Swedish Childhood Cancer Fund awards grants to the Swedish Working Group for Long-term Follow-up after Childhood Cancer (SALUB). SALUB is an important knowledge resource and partner for other working groups, and it also initiates development and research projects in the field.


People who have participated in the reference group for Maxa Livet state that their quality of life has increased by 17 per cent in the six months since they became members of the programme. In a series of videos, some of the participants described the impact the programme had on them.

“Being able to open your mind and talk about the time when you were sick means a lot; so does the sense of belonging that you can’t get anywhere else and the help you get for your problems. It’s invaluable”

“Every time I participate in an activity, I feel more ‘whole’ afterwards, and slowly but surely I begin to find myself and live life the way I want”

“Meeting new friends, exchanging experiences, a sense of belonging, understanding and enjoying the wonderful atmosphere at Maxa Livet”

Since autumn 2015, the magazine Maxa Livet comes out twice a year. Because the magazine is so new, no reader surveys have been conducted as yet.

In an assessment of the Maxa Livet conference, participants stated that the most important aspect was getting to meet others in the same situation, feeling a sense of belonging, exchanging their experiences and learning about new medical knowledge and where to turn for advice and support.

Thanks to the grant to SALUB, the working group has developed a proposal for minimum requirements for long-term follow-up of the disease.



Lack of support for children with cancer and their families

All children with cancer and their families are entitled to equal and relevant support in school, both during and after treatment, and regardless of the outcome. But when a child develops cancer, it leads to dramatic changes for the whole family and friends. During the different phases of the disease – from diagnosis to the time after treatment is completed – many situations arise in which the families need various types of support and assistance.

Pupils who have or have had a cancer diagnosis can sometimes need extra support in school and instruction that is adapted to their individual needs. They need to be allowed to make up for instruction they missed during a treatment period. Sometimes pupils suffer from concentration difficulties, fatigue or other cognitive problems after completing their treatment, and they are also entitled to the support they need.

Under Sweden’s Education Act, schools are required to help children with special difficulties due to illness or disability. But despite this, many feel that they do not receive the support they need to achieve the goals of their curriculum.

Support materials for schools


  • The 2012 survey of families conducted by the Swedish Childhood Cancer Fund showed clearly that schools in general lacked preparedness for when a pupil develops cancer. As many as 43 per cent felt that the school did not have sufficient knowledge and preparedness.
  • To meet this need, the Swedish Childhood Cancer Fund took the initiative to develop support materials – Right to School Support – which contain concrete advice and guidance regarding the schooling of children and teens with cancer.
  • The school material was developed in collaboration with hospital teachers and consulting nurses at the six regional childhood cancer centres. The material consists of a number of target group adapted films and governing documents explaining the rights and responsibilities of schools and of pupils diagnosed with cancer.
  • The Swedish Childhood Cancer Fund has previously offered the Metodhandboken (Method Guide), a pedagogical tool in school for pupils with acquired brain injuries, and Plötsligt händer det (All of a Sudden It Happens), a guide for the school.
  • To further enhance understanding and awareness of the needs that arise when a child develops cancer, the Swedish Childhood Cancer Fund annually publishes a theme issue of its Kids & Cancer magazine with a focus on pre-schools and schools.


The support material “Right to School Support” has had good results. Of those who have used this material, 89 per cent said it was helpful.


Member satisfaction

with the Swedish Childhood Cancer Fund’s “Right to School Support for Pupils with Cancer” according to the 2016 family survey.

  Member satisfaction
Agree (4-5) 89
Partly agree (3) 9
Do not agree (1-2) 2

Average in 2016: 4.3. Average in 2012: -. No answer/no opinion: 3%

A new family survey was conducted in 2016 with the goal of determining whether families’ perception of the school’s preparedness had changed since the material was developed. The survey found that the average perception of the school’s awareness and preparedness had increased from 2.9 (in 2010–2012) to 3.1 (in 2013–2015).

Av1 - School robot


  • The development project with the AV1 school robot continued in 2018. The 42 robots now in place in schools are designed to connect pupils receiving cancer treatment with their classmates and instructors.


The assessments of the AV1 project have been very positive. The hope is that when the project closes on 31 December 2019, at least 100 of Sweden’s 290 municipalities will have chosen to participate and use the school robot as a support in the instruction of children with long-term illnesses.

Consultant nurses


  • The Swedish Childhood Cancer Fund finances special consultant nurse positions. The number of such positions has increased from 8 to 12 full-time positions since the first survey was conducted in 2012. Through measures such as school visits to inform classmates and instructors about the child’s cancer and what it means for the child, these nurses provide important support to the children and their families. These school visits are not only an important support for the pupils with cancer, their classmates and instructors, they also provide an opportunity for encounters that contribute to greater understanding of the disease and how it affects the pupil’s living situation.


In the member survey conducted by the Swedish Childhood Cancer Fund in 2016, 55 per cent of responding families stated that a nurse made a visit to their child’s school, up from 47 per cent in the corresponding survey in 2012. This means that a larger percentage of children and family members have been assisted by the nurses to increase awareness among teachers and classmates about what their cancer means and how it affects the entire living situation of the affected child.

The swedish childhood cancer fund’s support to the family


  • The Swedish Childhood Cancer Fund works actively to provide support and relief to families in the form of residential stays/accommodation, camps, various types of support at hospitals and providing informational material about childhood cancer. The aim is to provide opportunities for recreation and recovery, to offer staff who can make life easier during the treatment period and to raise awareness about the child’s cancer.
  • The Swedish Childhood Cancer Fund awards grants to healthcare research and psychosocial research in order to contribute to better care that meets the needs of children with cancer and their families.


In a 2016 survey, 90 per cent of the responding parents stated that they were satisfied with the Swedish Childhood Cancer Fund’s work. These results are at the same level as the previous survey in 2012. Even if the perceived impact of the Swedish Childhood Cancer Fund’s work has not increased, parents’ assessment of our work remains at a good level with an average value of 4.4 of 5.


Member satisfaction

with the Swedish Childhood Cancer Fund’s work according to the 2016 family survey.

  Member satisfaction
Agree (4-5) 90
Partly agree (3) 8
Do not agree (1-2) 2

Average in 2016: 4.4. Average in 2012: 4.4. No answer/no opinion: 18%

Support to siblings


  • The Swedish Childhood Cancer Fund finances sibling supporters at all six of the nation’s paediatric oncology centres and at Lilla Erstagården, which is a hospice for children.
  • The sibling supporters are resource people in a support group surrounding the families. Their most important task is to pay attention and become aware of the needs that arise in a sibling when their brother or sister is diagnosed with cancer.
  • Among other things, the Swedish Childhood Cancer Fund has arranged camps for siblings at the Ågrenska competence centre south of Gothenburg and at the Barretstown Camp in Ireland. In addition, the Swedish Childhood Cancer Fund arranged national and regional sibling meetings in collaboration with the sibling supporters.


In the Swedish Childhood Cancer Fund’s 2016 member survey, 29 per cent stated that they had contact with a sibling supporter through the hospital. In May 2017, the participants of the sibling camp at Ågrenska provided evaluations in which a whopping 94 per cent stated that the activities during their stay were positive. In addition, 71 per cent stated that they learned more about the illness and its consequences.

Residential activities and recreation


  • The Swedish Childhood Cancer Fund regularly arranges family visits and themed visits at Ågrenska for families and young people from the entire country. For families, the focus is usually on one diagnosis per visit. Special weeks are also arranged for parents and siblings who have lost a child or sibling to cancer. The family stays include lectures and discussions on relevant medical findings, educational issues, psychosocial aspects and the support that the community can offer. The visits for young people and siblings focus heavily on social activities, teambuilding and sharing experiences with others in similar situations.


In the 2017 evaluations of visits at Ågrenska in general, 77.2 per cent of participants stated that they gained more medical knowledge about the child’s diagnosis, symptoms and treatment during their stay. In a previous evaluation from 2015, that figure was 69 per cent.


The stay at Ågrenska

contributed to knowledge about grief management for parents who have lost a child, according to the course evaluation.

Agree completely 73
Agree somewhat 27

Over 93 per cent of parents stated that it was valuable to share their experiences with other parents. This means that the perceived benefit of these stays has decreased somewhat compared with previous surveys from 2015, in which 100 per cent agreed completely with this statement. However, it is important to note that none of the respondents stated that they disagreed, which should be seen as a passing grade for the activities as a whole.

The special weeks arranged for parents who have lost a child to cancer aim primarily to give support in grief management and to provide opportunities to meet with other parents in the same situation. At the end of the stay, essentially all participants shared the opinion that their time at Ågrenska had given them greater knowledge of grief management, which was a key objective of the stay.

Read more about activities at Ågrenska.

Grandparents initiative 2018


  • In 2018, the Swedish Childhood Cancer Fund, in collaboration with the local associations, held a day of lectures and conversations in each region (a total of six days) targeting the grandparents of children receiving cancer treatment or who have completed their cancer treatment. The aim was to investigate the needs of the target group and then to adapt tools to give them the support and assistance they need to cope with the situation of their grandchild with cancer as well as their adult child’s struggle to deal with the disease. Quite simply, to see grandparents as a group of individuals with dual sorrows.


The evaluation showed positive results overall, and provided a greater understanding of the needs of the target group grandparents of children with cancer. Thanks to this, the Swedish Childhood Cancer Fund plans to conduct a lecture and conversation tour in 2019 on the same model for grandparents who have lost a grandchild to cancer. The lectures themselves will be filmed to form a basis for brief informational videos that will be accompanied by web-based text material targeting groups who get together to exchange experiences as well as individuals seeking information and knowledge online.



  • In autumn 2018, the Swedish Childhood Cancer Fund began the preliminary work for a two-year project of providing psychosocial conversational therapy by Skype. As of the start of 2019, there is a Skype clinic in which social welfare officer and psychotherapist Lena Falck offers conversational therapy to families whose children have been treated for brain tumours and families whose children are currently being treated for brain tumours after a relapse.


The Skype project has helped 12 families and conducted 58 conversations during the period 1 February to 31 March. The project is being assessed regularly every six months, and so far the response has been very positive.