A good life for people with cancer and their loved ones despite cancer 2022

Strengthening the knowledge base

Research. The Finnish Cancer Registry is continuing its research on the later-life health and social determinants for young cancer survivors. The main partners are the Nordic research communities and the Finnish providers treating patients in catchment areas for highly specialised medical care.

Cooperation with cancer centres. One of the aims of the Finnish Cancer Registry is to expand its data content in a controlled way in order to create a national cancer quality register in the future. During 2022, the basis for the definition of a national ‘quality register’ for cancer has been established in cooperation and official meetings (THL). The main data elements selected are cancer prevalence at diagnosis, recurrence, spread and cancer treatment. The state budget has allocated additional and continuous funding for the development of the quality register activities of the Cancer Registry. During 2023, planning and development activities will be launched and organised in a more systematic way. A key way to expand the data content has been to focus on and communicate the structured and consistent recording of patient data at national level. Cooperation with cancer centres will be part of the quality register activities to be initiated.

Advice services

Advice services package. The CSF’s advice services in 2022 consisted of a national advise service and advise services provided by member associations. The aim of the CSF’s advice service is to provide information and psychosocial support to cancer patients, their loved ones and others who are concerned about cancer. Psychosocial support was provided equally according to the needs of the client in different parts of Finland at different stages of the disease, but also in the transition to everyday life after illness. Health promotion featured in all the services. The national helpline provided advice by telephone, email and chat. Advice was available in Finnish, Swedish and English. The national advisory service was provided remotely, while advice services for member associations were provided remotely as well as in person.

Benefits advice. The benefits advice phone service has been in operation for 10 years. It is part of a national advice service and serves the whole of Finland. The benefits helpline and e-mail helpline provided information on income and benefits for cancer patients. The vast majority of the contacts concerned the depletion of the income of the patient or their family. However, often several issues were covered in one call. In 2022, there were 117 contacts, the majority of which were phone calls. The statistical tool for benefits advice was introduced in 2022.

Cancer pain hotline. The hotline, organised in cooperation with HUS, continued to operate as before. The service is for people with cancer, their loved ones and health professionals. The service is provided by the HUS Pain Clinic in cooperation with the CSF’s national advice service. The cancer pain hotline is staffed by specialist nurses and doctors specialised in pain management on weekdays from 09.00 to 12.00. In 2022, 37 calls were made to the hotline. As a rule, the reason for the call was insufficient pain medication or the caller did not know where to contact for pain management. Other reasons included uncontrollable pain and problems in administering pain medication. Most problems could be solved during the phone calls. However, some clients were referred to the Pain Clinic for treatment or the clinic’s doctor was consulted to find the right medication. On a few occasions, the Pain Clinic’s doctor was also in contact with the treatment provider to give advice.

Genetic counselling. Since 1995, the CSF’s nurse counsellors have been providing genetic counselling. The need for this is growing as genetic research and personalised medicine develops and people become more aware of the issue. In 2022, 143 people were counselled for heredity cancer risk by the counselling service and 111 people were referred to a hereditary cancer risk assessment by a hereditary doctor, of whom 59 were referred to specialist care. The genetic information obtained is of great value to enquirers in terms of clarifying the diagnosis, bringing forward the diagnosis of relatives at risk, facilitating the planning of follow-up and preventive measures, and providing relatives (over 18 years of age) with predictive genetic testing. In addition, they will have access to prevention and early detection after screening. If no family history of a genetic defect is found, the person can be exempted from screening and their risk of cancer is the same as in the general population. In 2022, three courses were organised: concerning breast or ovarian cancer patients with a BRCA gene defect and healthy BRCA 1 or 2 gene defects, arranged as a Teams training course, and a weekend course on healthy Lynch syndrome diagnosed patients.

Development work. In 2022, cooperation and integration with the activities of the regional counselling services continued. A two-day training course for counsellors was organised on the “Relationship building blocks” in cooperation with the relationship counselling centre Kataja. In addition, counsellors attended internal Teams trainings and participated in external seminars and lectures.

Services for families

Let’s Talk about Children (LTC) intervention. In 2022, the CSF became a project partner in the YLVA project of Mental Health Finland (MIELI) on supporting the mental health and parenthood of over-indebted people (STEA, 2022-24). The aim of the project is to strengthen the mental health and well-being of parents of over-indebted families by increasing the mental health skills of the professionals who work with them. The number of applications for financial support to the CSF by people with cancer has increased almost tenfold in the last ten years. Through the YLVA project, the CSF will, among other things, gain more people specialised in the LTC method and LTC trainers. An LTC booster day for CSF professionals trained in the LTC method was organised in spring 2022 in cooperation with the MIELI Effective Child and Family work team. In the spring, the CSF provided a remote pilot group for LTC method guidance to professionals from member associations who have attended the LTC method training. A marketing video for LTC work was also produced for national use during the year.

In 2022, cooperation with the relationship counselling centre Kataja Association continued in the field of rehabilitation and support person activities. In the spring, a four-part webinar series entitled Relationship as a Resource when a Family Member has Cancer was organised for cancer patients, their loved ones, professionals, CSF volunteers and other interested parties. A total of 248 people took part in the webinars. Feedback was received from 36% of the participants, with an overall average score for the webinar series of 3.3 on a scale of one to four.

Two ‘Building blocks of a Relationship’ training sessions were provided nationally for professionals working with the CSF in the autumn, giving professionals further reinforcement and tools for working with couples in situations where one partner has cancer.

Rehabilitation support

Two out of three people with cancer are cured and more and more people with cancer live with chronic disease for years or even decades. Due to good treatment outcomes, the need for rehabilitation support for people with cancer is increasing from diagnosis, during and after cancer treatment.

Goals. The rehabilitation support provided by the CSF promotes and maintains the functional and working capacity and well-being of cancer patients, which are the basic conditions for a good life. The CSF provides rehabilitation support in a timely manner and to better meet the support needs of clients at different stages of the disease. The role of rehabilitation support provided by the CSF is to complement public rehabilitation services.

Courses. The CSF and its member associations provide thematic, goal-oriented and professionally guided group courses nationwide for cancer patients, faulty gene carriers and their relatives, with STEA support and self-funding. The courses are given both face-to-face and online. Courses are organised as three-five day sessions in rehabilitation centres or as outpatient rehabilitation sessions lasting several weeks. The aim of the courses is to provide information, strengthen the personal skills, resources and coping mechanisms of cancer patients and their loved ones, and to support them in their everyday coping with the disease. The courses also provide professionally guided peer support. The courses support participants in taking an active role in their own rehabilitation and well-being.

Sixty-three courses were completed in 2022, with a total of 1100 applicants and 699 participants. The number of courses, applicants and participants increased to pre-Covid-19 levels. Courses were offered as individual, couple or family courses, and were delivered as thematic or activity courses. The courses were organised in rehabilitation centres as intensive courses, open courses, online courses and combined courses. 72% of the participants were women/girls and 32% men/boys, while 59% of participants were cancer patients and 41% were cancer survivors. The Covid-19 situation caused some changes in the winter and spring 2022 courses, and some courses had to be postponed or cancelled. Feedback on the courses was received from 80% of participants. Based on this feedback, the perceived usefulness of the courses was 4.4 on a scale of one to five.

Remote courses for families. The ‘Feelings Online’ remote group model for children was completed in 2022, targeting peer-to-peer activities for primary school children who have lost a parent or sibling. The remote group model responds to client requests that every child in the target group, regardless of where they live, should be able to apply to join a national remote group. The group model has been created in cooperation between the CSF, the Cancer Society of Southwest Finland, the Sylva association and Child Death Families Finland Käpy. There has been cooperation with the Young Widows and Widowers association in marketing and reaching the target group. In 2022, three Feelings Online groups were implemented under the CSF’s course activities as joint association cooperation (young people who have lost their parents, primary school children who have lost their parents, primary school children who have lost their siblings). In addition, a parent-oriented online course ‘When a parent has cancer’ was developed for the Peda.net platform.

Development. Issues related to rehabilitation support and courses were actively developed as an internal CSF activity. This work was carried out in cooperation with other organisations, regional cancer centres and public health services. In terms of course activities, participant feedback forms were updated and a follow-up feedback form was introduced as a new feature to reflect the more lasting impact of the courses. The course application forms were also updated. Concerning distance learning for the health and well-being of people with cancer, the structure and content of the distance learning course was explored with people with cancer and CSF professionals in remote workshops to ensure that it would best promote the health and well-being of people with cancer. An internal development group has been set up to develop the distance learning course. Two promotional videos were produced to promote the course and these are being used to reach the target audience.

In 2022, a Master’s thesis was completed, which provided information and development proposals for the implementation of digital tools in cancer organisations. The thesis was conducted in cooperation with the CSF Cancer and Living Skills Ltd. The knowledge gained from the thesis will be used in the implementation of digital tools.

Rehabilitation survey. In spring 2022, the CSF, the Finnish Diabetes Association and the Heart Association of Finland and the Rehabilitation Foundation conducted a survey to map and describe the impact of cancer, diabetes and heart disease on the lives and everyday routines of people with cancer. The survey also identified possible support needs and the rehabilitation that had been carried out. The questionnaire was used to find out what sort of support and rehabilitation the patients had received from different professionals to help them cope in their daily lives or at work. A total of 979 people responded, of whom 360, or 37%, were cancer patients. The results will be used for advocacy work on support and rehabilitation for patients and their families.

The Living Skills motivation and assessment tool was not used in 2022. During the year, information and development proposals were collected on the implementation of digital tools. In addition, a training package on the effectiveness and targeting of courses was designed for CSF professionals to increase their understanding of effective course activity and encourage them to use the Living Skills motivation and assessment tool.

The rehabilitation steering group is a group of experts from the CSF member associations that monitors, plans and develops the organisation’s rehabilitation support services and courses. Four meetings of the group were held during 2022.

Network cooperation. The cancer organisations are active in the rehabilitation network (KUVE) coordinated by SOSTE ry, the course development network (KUTO) and the outpatient rehabilitation network and its development group coordinated by the Bone Association. The general peer development of activities continued together with the Rehabilitation Foundation, the Heart Federation, the Psoriasis Federation and the Confederation of Mental Health.

Training day for cancer organisations. In 2022, the first joint training for counsellors and rehabilitation and health promotion specialists was organised. The theme of the training was Older People and Cancer. The training day took place as a two-day live training in Helsinki. The 30th anniversary of the National Counselling Service was celebrated with a banquet. A total of around 54 experts from the Cancer Society attended the training.

Volunteer and support person activities

Volunteer development work. The Volunteering Handbook project was launched in March 2022 in cooperation with four member associations. The aim of the handbook is to make visible existing policies and practices that work well and to agree on common new practices and policies that support volunteer management and strengthen management skills. The handbook will improve the quality and flow of activities by strengthening and developing common structures and practices that support the delivery of high quality volunteering. It also aims to ensure excellent, coherent and smoothly organised volunteering activities that increase people’s willingness and motivation to volunteer for the CSF. The handbook will provide a clear and comprehensive source of information to support the development, communication and marketing of activities, and will enable new volunteers to be reached and recruited. The electronic volunteering handbook will be completed in autumn 2023. In addition, the work on volunteering included the use of social media cards for volunteer appreciation and recruitment and a volunteer pathway video for use by member associations.

Management training. During the year, support and training was provided to assist and develop the management and evaluation work of the member associations’ volunteers through three volunteer management training webinars. The webinars were conducted by the business management consultancy Osana yhteistä ratkaisua Ltd and covered the planning and aims of volunteering, coordination processes and the basics of service design thinking. In addition, four remote volunteering coffee mornings were organised for staff, including themed coffee mornings, and a national volunteering seminar was held once.

Volunteer survey. In 2022, a nationwide volunteer survey was conducted for volunteers from CSF member associations, with 566 respondents. The survey provided information on conducing volunteer work in the CSF and on the need for the further development of these activities nationwide. CSF member associations received association-specific reports on the results of the survey for developing their own volunteer activities. A total of 4 200 people were involved in various volunteering activities within the CSF (Figure 3). Such volunteers are a valuable asset for the organisation.

Russian-speaking volunteers. Cooperation with the Central Organisation of Russian-speakers in Finland (SVK) and its member associations was initiated by providing peer support to SVK members with cancer through CSF peer support.

Experience actors. Together with the national Experts by Experience Network, the CSF arranged basic training for new experts by experience in Kainuu, Lapland and Pirkanmaa, and further training in Lahti. In addition, a communications campaign for the coming years was planned in cooperation with the Experts by Experience Network. The CSF’s expert by experience staff are experience-sharing experts trained by the network and the CSF to increase understanding and knowledge of cancer among professionals and students in different fields and among the public.

Support person activities. These are a key form of volunteering in the CSF. A support person can assist a patient or their loved ones through the different stages of the disease, as a peer supporter or as a palliative care support person. In 2022, the development group for support persons comprised ten workers from member associations. The group met every couple of months during the year. It evaluates and develops the support person activities of the CSF and promotes access to support services nationwide. The terms of reference of the development group were updated in autumn 2022.

Statistics. During the year, a total of 836 peer and palliative care support workers were employed by the CSF. There were 542 peer supporters, 284 palliative care support workers and 179 peer counsellors. In total, around 2971 people received assistance from the support persons. It is estimated that there were around 7,900 support person encounters. There were 104 peer support groups run by support persons. Peer support groups met a total of 924 times during the year, with 4,887 visits.

Training. In 2022, an e-training course on online pedagogy was provided for professionals training the support persons of member associations in cooperation with the Jyväskylä University of Applied Sciences. Peer mentor training on the Peda.net platform was completed and the related trainer material was renewed in cooperation with the Sylva association and the Cancer Society of Central Finland. During the year, a peer supporter online training course, a peer counsellor online training course and a Good Everyday Life for Children refresher training for support persons related to the Let’s Talk about Children intervention were offered nationwide through Peda.net in cooperation with CSF member associations. At national level, 93 participants took part in the peer support training, 79 in the hospice support person training and 32 in the peer counsellor training during the year. During the year, 438 people participated in refresher training courses nationwide. Two national distance training sessions for support persons were provided during the year, with each training evening attracting about 80 support persons.

Activity/work supervision. Support persons were offered face-to-face and remote counselling to help them cope and work with people with cancer or their loved ones. There were 172 group counselling sessions during the year. The number of participants in these sessions was 990 nationwide. During the year, group-based remote counselling for CSF peer counsellors was piloted in cooperation with the Cancer Society of Pohjanmaa and the Cancer Society of Satakunta: three groups were offered in the spring and four in the autumn.

OLKA cooperation. OLKA’s TOIVO peer support app had eight member associations by the end of 2022, making it increasingly possible for cancer patients and their loved ones to access peer support using the app. The CSF’s national visibility and coverage was streamlined in 2022 in the TOIVO app. The member associations included in the app are now linked under the CSF brand, making it easier to find peer support.

The nationwide SAAVA project on volunteer activities in palliative care (STEA, 2021-2023) is coordinated by the Finnish Palliative Care Association. The CSF is a partner in the project, as well as the Cancer Society of Northern Finland and Cancer Society of Southwest Finland in the pilot areas. The aim of the project is to harmonise the training model and structures of volunteer activities in palliative care nationwide, to increase the visibility of the activities and to make them a more natural part of public health care. The annual seminar day for palliative care volunteers took place remotely in October, coordinated by the SAAVA project. In 2022, the content of the allaboutcancer.fi website was updated to include the activities of the CSF’s palliative care support workers.

Financial assistance for people with cancer and families with a child affected by cancer who are on low incomes

The Cancer Foundation provides financial assistance to people with cancer facing financial difficulties. Grants are awarded on application accompanied by a social worker’s report. The foundation’s support for low-income people with cancer i is distributed through the CSF’s Social Committee. Grants ranged from €400 to €1 000.

The importance of assistance in terms of families’ livelihoods has increased significantly in recent years with rising economic insecurity and poverty and the energy crisis. The many forms of support for cancer work have a place alongside other forms of social support.

The amount of support for low-income cancer patients will be increased in the future, based on demand. In 2022, the development of an electronic application process was launched and will be implemented in 2023, while raising awareness among target groups and social workers of the form of assistance and the conditions for accessing it.

The Cancer Foundation will provide support to families with a child with cancer through the Children’s Cancer Fund in memory of Emilia Heinonen and the Svea Ahlqvist Fund. A total of €48 000 was awarded to 40 families.