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Rehabilitation support is support provided by CSF professionals for people with cancer and their loved ones. Volunteering provides activities and support for everyone affected by cancer.

Rehabilitation support

Rehabilitation support aims to reduce and prevent the harm caused by cancer and its treatments, and to support the patients’ and their loved ones’ physical, mental and social functioning and working capacity and ability to cope with everyday life at all stages of the disease.

A rehabilitative approach and rehabilitation services strengthen the client’s ability to take care of themselves, draw on their own resources and means of coping, and actively promote their own rehabilitation and health.

The main rehabilitation support service is goal-oriented, group-based and professionally supervised course activity (formerly known as adaptation training). It provides information about cancer, having cancer, and supports the physical, mental and social recovery of people with cancer and their loved ones in the personal life situation of each individual. The CSF courses were run with the assistance of STEA, with self-funding and with funding from Kela.

In 2020, a total of 48 courses were organised with STEA support, either cancer-specific or thematic and practical courses. Courses were also organised for cancer susceptibility gene carriers. The courses were for individuals, couples or families. There were 26 courses held at rehabilitation centres as intensive courses, 16 open-ended courses, five online courses and one combined course.

The Covid situation led to changes in course activities. Courses were postponed or cancelled, some courses went fully or partially online, group sizes were reduced, facilities and activities were reorganised and face-to-face activities were designed in line with the instructions and recommendations of the health authorities.

The number of applicants and participants was lower than in previous years due to the Covid situation. A total of 777 applicants and 497 cancer patients and their loved ones attended the courses. The largest group of participants were women with cancer. Feedback was received from 77% of participants and, despite it being a challenging year, the overall rating of the courses by the participants rose to 4.6 on a scale of one to five.

Rehabilitation is being actively developed as an internal activity of the CSF and in close cooperation with funding bodies (Kela and STEA), regional cancer centres (FICAN) and other organisations. In 2020, development focused on remote courses, support for participants’ personal goals and client segmentation. Client profiles, descriptions of clients’ support and service needs were completed using service design methods.

The remote course activities were developed and conducted as part of the Etäsope project coordinated by the Finnish Association of People with Physical Disabilities and funded by STEA. Preliminary results of a study linked to the project encourage the continuation of distance rehabilitation as an organisational cooperation across diagnostic boundaries.

The Living Skills Motivation and Assessment Tool was tested in five courses and member associations were trained in its use. The tool helps participants to identify and describe their situation, factors affecting their health and well-being, their own personal resources, and to set personal goals for change and evaluate the achievement of their goals. The testing and client feedback provided ideas for further development to improve the user interface of the programme.

The CSF plays an active role in the rehabilitation networking of the KUVE rehabilitation network coordinated by the Finnish Federation for Social Affairs and Health (SOSTE), in the adaptation training network of organisations (SOPE), and in the open rehabilitation network coordinated by the Finnish Osteoporosis Association and its development group. The general benchmarking of adaptation training activities was continued together with the Rehabilitation Foundation, the Finnish Heart Association, the Allergy, Skin and Asthma Federation, and the Finnish Psoriasis Association. A representative of the CSF is also on the cooperation and development group involving Kela, STEA and several organisations.

Two patient guidance materials for health professionals were produced for the medical database of the Finnish Medical Society Duodecim. We also participated in a project coordinated by Duodecim and funded by STEA on patient participation in the development of current care guidelines.

The annual rehabilitation seminar was held as a webinar in November. About 85 experts from cancer organisations and public health took part in the event.

Brief therapy

A STEA-funded brief therapy service was launched in September. This is designed for people with cancer and their loved ones who are experiencing distress or mild depression in a stressful and challenging life situation. Brief therapy is not therapeutic method.

Brief therapy consists of 1-5 remote sessions, which are conducted in individual, couple or family meetings, either via Teams or by phone. The focus of the brief therapy sessions was on providing psycho-educational support, empowering and enhancing people’s sense of security, being listened to, and recognising and accepting their feelings.

About 100 clients were referred for brief therapy during the autumn. The majority were women of working age. Thirty per cent of the brief therapy sessions were for loved ones of cancer patients.

Around half of the clients sought therapy within four months of diagnosis, during rapid disease progression or relapse. One in five sought brief therapy after the end of treatment.

About 40% of brief therapy clients were referred to the service through the CFS’s national advice service and 50% by regional cancer societies. Cooperation in referrals was established with Helsinki University Hospital, Kuopio University Hospital and Lapland Central Hospital.

Volunteering

The CSF offer its volunteers meaningful activities and ways to do good. Volunteers support cancer patients and their loved ones at all stages of the disease. A total of 3,900 people volunteered in various capacities within the CSF. Volunteers are an important resource for the organisation.

We want to systematically invest in the development of volunteering in the coming years. A project description and a project plan for the volunteer development project were prepared in cooperation with regional cancer associations and national patient organisations. The development project will be implemented in 2021.

The Covid-19 pandemic and its restrictions affected volunteering by significantly hampering both face-to-face individual and group activities and the organisation of training sessions. Where appropriate, electronic communication were used.

The national volunteer survey was conducted for the third time, with 496 volunteers responding. The survey provided information on running volunteering activities and on the need for developing them. Member associations received reports on the results of the survey for each association to develop its own volunteering activities.

A register describing volunteer activity was developed within the Järkkäri CSF client management system and harmonised guidelines for statistics were created.

Volunteer management training continued with the volunteer remote morning coffee sessions. Eleven thematic events, each with 20 participants, were organised for the staff of cancer associations working in the field of volunteering. In January, the traditional annual meeting with voluntary workers was held.

Russian speakers. The CSF is a partner in the “Well-being together” project of the Central Organisation of Russian Speakers in Finland. As part of the collaboration, discussion groups for Russian speakers continued at the Helsinki University Hospital Cancer Clinic with the Southern Finland Cancer Association. Joint work was also launched with four other regional cancer associations.

Support person activities

A support person assists the patient or their loved ones at the different stages of the disease as a peer support or palliative care support person.

In 2020, the development group for support personnel activities consisted of eleven staff from member associations. The group evaluates and develops the support person activities of the CSF and promotes access to support services nationwide. A marketing card was produced to support the marketing of support person activities and was distributed at hospitals, member association premises and different events. A support person business card was produced for one-to-one support meetings. Printed training material was produced for peer support group facilitators, as well as an electronic toolkit to support them in their role as group facilitators.

Fifteen professionals from 12 different member associations responded to an internal evaluation questionnaire on support person activities. The majority of respondents felt that their own association and the CSF would benefit from support person activities being developed nationally. There is still a need to strengthen and harmonise the structures of support person activity, for example in terms of statistics. The marketing and communication of support person activities should be improved and the training path for support persons should be developed, so that they have the flexibility to choose the volunteering path that suits them best. More resources need to be devoted to developing online activities, training and guidance.

The development of reporting and statistics on volunteering activities continued with the aim of integrating it into the Järkkäri client management system. A total of 907 peer and palliative care support persons worked within the CSF. There were 520 peer support persons, 244 palliative care support persons and 216 peer support group facilitators involved in the activities, providing support to some 3 700 people. The number of support person encounters is estimated at about 8 800. There were 99 different peer support groups run by support workers. Peer support groups met a total of 560 times during the year, and 3 256 visits were made to the groups.

Guidance was offered to support persons nationwide in which they were assisted in coping and working alongside a person with cancer or a loved one. Group guidance was provided 140 times during the year. The participation rate nationwide was 742. An online presentation of the peer support persons model was made to the whole organisation and related material was transferred to the intranet service for use by member associations.

Pilot training sessions for remote peer support persons were carried out with member associations. Nationwide remote refresher training was provided For longer-term peer support group facilitators. At national level, 31 people attended the training for palliative care support persons, 206 people attended the training for peer support persons and 112 people attended the training course for peer support group leaders. During the year, 298 people participated in refresher training courses nationwide.

A training package for support persons was created for the CSF in collaboration with MIELI Mental Health Finland, based on the Good Everyday Life for Children volunteer training model of the Effective Child and Family work method. Online refresher trainings on the theme of a good everyday life for children were piloted in cooperation with the Cancer Society of Pohjanmaa and the Finnish Breast Cancer Association. To support the activities, a Good Everyday Life for Children logbook for parents, volunteers and staff was developed in cooperation with MIELI and member associations for use by the CSF and for distribution to clients.

The CSF participated in a nationwide working group, coordinated by OLKA, which aims to develop the work of volunteers and support persons at hospitals. Due to the Covid-19 pandemic, activities were suspended in the spring and the annual national summer seminar for hospital volunteers was cancelled.

A national stocktaking of volunteer activities in palliative care was produced in cooperation with Terhokoti, the National Church Council and Diak. To promote volunteering in palliative care, more extensive national development work needs to be launched to harmonise the structures of volunteering in palliative care, increase its visibility and make it a more natural part of public health care. It was decided to seek additional external funding for this cooperation.

Experts by experience

At the end of 2020, the CSF had a total of 30 experts by experience trained by the CSF and the Experts by Experience Network. Experts by experience are people who have had challenging life experiences, cancer or who have cancer or their loved ones who are able to pass on experiential knowledge. Their role is to increase understanding and knowledge among professionals and students in various fields, as well of the general public. Their experiential expertise is utilised in developing activities and services.

New experience workers were trained in Kuopio in cooperation with member associations. However, due to the Covid situation, part of the basic training and all further training had to be postponed. The CSF has been developing the basic training for the Experts by Experience Network into multi-modal training.