| Barncancerfonden

Annual review 2019

Impact report

Our 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 issues that we want and need to address. In 2019, the Swedish Childhood Cancer Fund developed a strategic plan for 2020–2025. The impacts of the strategic plan have not yet materialised and will be presented in future impact reports.

More research into childhood cancer is needed

Through funding offers for research projects and research positions, the Swedish Childhood Cancer Fund contributes to funding research and giving Swedish researchers the long-term support that is necessary to cure more children from cancer.

The Swedish Childhood Cancer Fund finances basic research projects and clinical 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 cutting-edge therapies with cancer-destroying T-cells or targeted molecules, to improving treatment protocols and providing opportunities for better psychological care during and after treatment.

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 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.

Funding offers for research projects and research positions

Activity

The Swedish Childhood Cancer Fund supports research through funding offers for research projects and research positions.
In 2019, the Swedish Childhood Cancer Fund allocated one of its biggest grants ever to map out congenital genetic causes of childhood cancer. This will lead to better prevention and treatment – and lives saved.
The Swedish Childhood Cancer Fund has translated its application system into English, which will allow more foreign researchers in Sweden and elsewhere to apply for funding.
In partnership with MedTech4Health, the Swedish Childhood Cancer Fund has announced funding offers for “Medical technology innovation for children with cancer”. The goal is to develop products or services that contribute to better medical or social care of children with cancer and their families.
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 integrated in paediatric 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 blood, the dosage can be tailored for each individual child, thus increasing their chances of survival with fewer side effects.
The Swedish Childhood Cancer Fund has approved grants to research in the field of immunotherapy, increasing its involvement in new innovative treatment methods. The immunotherapy research that the Swedish Childhood Cancer Fund supports includes research on CAR T-cells, which have revolutionised the treatment of certain diagnoses.

Impact

Our funding offers for research projects 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 resulted in 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.

Five-year survival* after a diagnosis of childhood cancer

Year of diagnosis	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

The diagram shows the five-year survival* for different kinds of childhood-cancer. The statistics represent children in sweden, 0-15 years old, and is collected every five years.
* Percentage of children alive five years after their initial diagnosis.

Support for research infrastructure

Activity

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 important 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 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.

Impact

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 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 from AML.

Clinical research produces new treatments

Activity

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

Impact

An increase in the average amount of funds granted to clinical research projects is allowing more research to benefit patients faster, with greater chances of achieving the research goals.

Granted to clinical trials

Average amount per year, research project and position (SEK)

Year	Average per year
2001	555 717
2002	317 750
2003	400 294
2004	331 846
2005	333 456
2006	376 154
2007	315 625
2008	327 778
2009	581 250
2010	416 429
2011	446 160
2012	395 833
2013	350 386
2014	318 182
2015	368 859
2016	438 462
2017	659 722
2018	600 926
2019	835805

Hope

Activity

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 in Gothenburg. Both departments are accredited by Innovative Therapies for Children with Cancer, ITCC.

Impact

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 trials, 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

Activity

The Swedish Childhood Cancer Fund’s support for 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 link between research and clinical practice, which contributes to improved treatment protocols.

Impact

The new treatment protocol has increased survival and reduced complications. The Swedish Childhood Cancer Fund contributed to the treatment protocol for acute lymphoblastic leukaemia (ALL), 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 with acute myeloid leukaemia (AML) are treated according to NOPHO-AML 2012 – a major international research and treatment protocol. 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

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 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. The Swedish Childhood Cancer Fund contributes actively to developing public opinion to achieve a positive development in all areas affecting childhood cancer.

Training

Activity

Since 2006, the Swedish Childhood Cancer Fund has been conducting introductory courses and university courses in paediatric oncology for nurses.
In 2019, the Swedish Childhood Cancer Fund funded training in paediatric oncology for 250 nurses, nurse’s aides and county medical officers.
The Swedish Childhood Cancer Fund has granted funds for 6 grants for research/methodology studies at foreign institutions.
The Swedish Childhood Cancer Fund awarded SEK 2,651,130 in CPD grants to all paediatric oncology centres to distribute.
The Swedish Childhood Cancer Fund has funded 17 research positions for registrars since 2013.
The Swedish Childhood Cancer Fund has made 10 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.

Impact

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

Activity

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.

Impact

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 Political 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. 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. 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

Activity

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 Barn&Cancer, which comes out four times a year in about 50,000 copies, aims to spread awareness of childhood cancers and their consequences, and to provide affected families with support in their everyday lives.
The documentary segments in the Childhood Cancer Gala – the Swedish Humour Prize are yet another channel where the Swedish Childhood Cancer Fund spreads knowledge of what it is like to live with a childhood cancer and how the whole family is affected.

Impact

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. The segments shown at the gala live on in our social media and are therefore important in our dissemination of information and knowledge.

The information mission is important for ensuring that our organisation is associated with quality and reliability. By sharing our knowledge, we also enhance our credibility. The brand has developed favourably in recent years, finishing 2019 as the strongest brand in the non-profit sector in Sweden, with a Trust rating of 72 per cent (the second-highest was Doctors without Borders with 66 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 aged 1–14 in Sweden. In the 2019 survey, 39 per cent named cancer as the most common cause of death, which is an increase of six percentage points compared with the previous year.

The Childhood Cancer Gala – The Swedish Humour Prize

Activity

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.

Impact

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 2019 gala showed:

85 per cent felt that the gala shows that there is hope. The corresponding figure in 2018 was 83 per cent.
77 per cent felt that the gala was engaging. The corresponding figure in 2018 was 78 per cent.
12 per cent felt that the gala had increased their interest in becoming a Child Supporter. The corresponding figure in 2018 was 9 per cent.

Media relations

Activity

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.
To raise awareness of and concern for the Swedish Childhood Cancer Fund’s issues, we work actively with media relations and opinion shaping in owned and earned media.

Impact

Indicators that we are increasing awareness for our issue and for the situation of affected families: According to the 2019 annual 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 and the PR value amounted to SEK 106 million. This is a decrease from 2018, which is due in part to a couple of events in 2018 that had an exceptionally strong impact, and also that the impact of non-profit organisations is decreasing in general in Swedish media. We also see that the proportion of articles online is greater than those in print media, which has a negative effect on PR value. Ninety-eight per cent of all articles provided neutral publicity, while the proportion of strongly positively angled articles was 2 per cent.

Difficulties in daily life for survivors of childhood cancer

Close to 11,000 people in Sweden have had cancer as children, and 7 of 10 survivors struggle with late complications after the disease and its treatment. The Swedish Childhood Cancer Fund takes an active interest in the adult survivors of childhood cancer, both through its Maxa Livet (Get the most out of life) programme and by providing funding to development and research projects in the field of long-term follow-up.

Survivors of childhood cancer

Activity

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 programme arranges a variety of activities each year to meet the particpants’ needs, as well as a conference where adult survivors of childhood cancer meet, build networks, listen to lectures and get information about the tools available to them via a number of organisations and authorities.
The Swedish Childhood Cancer Fund also creates and publishes content for and about survivors of childhood cancer. We describe the life situations of the survivors while spreading awareness to the general public, government agencies, schools and politicians about this group and the challenges it faces.
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.

Impact

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’m beginning 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”

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. The need for support and assistance is great during all phases of the disease.

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. Or get the support they need as pupils with late complications after completed treatment.

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 the support available today to help them achieve the goals of their curriculum is insufficient.

Support materials for schools

Activity

A survey of families conducted by the Swedish Childhood Cancer Fund showed clearly that schools in general lacked preparedness for when a pupil develops cancer. 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 material consists of a number of target group-adapted governing documents and films 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 Barn&Cancer magazine with a focus on pre-schools and schools.

Impact

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.

A new family survey was later conducted to determine 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 – The school robot

Activity

Today there are 42 robots in place in schools, designed to connect pupils receiving cancer treatment with their classmates and instructors.

Impact

The self-assessment of the AV1 project has been very positive. Rather than concluding the project as planned on 31 December 2019, the Swedish Childhood Cancer Fund has decided to extend it for another year. This is because Oslo University has appointed a doctoral student to conduct a scientific assessment of the implementation of AV1 in Sweden and Norway. At the end of 2019, 60 local authorities in Sweden had used an AV1 robot.

Consulting nurses

Activity

The Swedish Childhood Cancer Fund finances special consultant nurse positions. The number of such positions has increased from 8 to 13.25 full-time positions since the first survey was conducted in 2012. Consultant nurses are the link between the families and the health care system. One important task is to inform classmates and instructors about the child’s cancer and what it means for the child. 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.

Impact

In the member survey conducted by the Swedish Childhood Cancer Fund in 2016, 55 per cent of responding families stated that a consultant 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.

The Swedish Childhood Cancer Fund’s support to the family

Activity

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.

Impact

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.

Support to siblings

Activity

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 whose 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 sibling supporters have arranged national and regional sibling get-togethers.

Impact

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

Activity

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 stay. 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 stays for young people and siblings focus heavily on social activities, team building and sharing experiences with others in similar situations.

Impact

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.

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.

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

Activity

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’s cancer as well as support their adult child’s struggle with the disease.

Impact

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 conducted a conversation and lecture tour in 2019 on the same model for grandparents who have lost a grandchild to cancer. The lectures were filmed and form the basis of brief informational videos that accompany online study materials, which can be used individually or as a basis for group discussions.

Digital conversational support

Activity

As of the start of 2019, the Swedish Childhood Cancer Fund offers digital conversational support with a social welfare officer/psychologist to families whose children have been treated for brain tumours and families whose children are currently being treated for brain tumours after a relapse.

Impact

The project has helped 51 families and conducted 648 conversations during the period 1 February 2019 to 27 March 2020. The project is assessed regularly every six months, and so far the response has been very positive. There are already plans to expand the service to include all families of children with cancer.

Annual review 2019

Impact report

Key issues that allow us to measure impact

More research into childhood cancer is needed

Funding offers for research projects and research positions

Activity

Impact

Five-year survival* after a diagnosis of childhood cancer

Support for research infrastructure

Activity

Impact

Clinical research produces new treatments

Activity

Impact

Granted to clinical trials

Hope

Activity

Impact

Care planning groups

Activity

Impact

Constant skills development is needed in the paediatric cancer field

Training

Activity

Impact

Quotes from nurses who took the course:

Opinion shaping

Activity

Impact

Lack of knowledge and understanding

Information

Activity

Impact

The Childhood Cancer Gala – The Swedish Humour Prize

Activity

Impact

Media relations

Activity

Impact

Difficulties in daily life for survivors of childhood cancer

Survivors of childhood cancer

Activity

Impact

Lack of support for children with cancer and their families

Support materials for schools

Activity

Impact

AV1 – The school robot

Activity

Impact

Consulting nurses

Activity

Impact

The Swedish Childhood Cancer Fund’s support to the family

Activity

Impact

Support to siblings

Activity

Impact

Residential activities and recreation

Activity

Impact

Grandparents initiative

Activity

Impact

Digital conversational support

Activity

Impact