Pilot study of the Living with Cancer Programme

Patients with advanced cancer have to live with the prospect of impending death
and are increasingly unable to continue their daily activities and fulfil their
usual social roles, they need to deal with considerable emotional, psychosocial
and lifestyle consequences. They do this in the face of increasing
multidimensional symptoms, such as fatigue, pain, anxiety, and depression. Most
of the time, patients, together with their family caregivers, need to manage a
huge part of their care and lives themselves. This can be highly complex and
many are unprepared to do this. We want to study how we can support patients
and their family caregivers.

Based on the Chronic Disease Self-Management Programme, we developed the Living
with Cancer programme: a self-management support programme aimed to improve the
wellbeing of patients with advanced cancer and their family caregivers.
According to the Medical Research Council guidelines on development and
evaluation of a new complex intervention, in this pilot study we will test the
programme, the procedures, the measurement instruments (diary and
questionnaires), and assumptions about recruitment and retention.

This is an explorative pilot of the online Living with Cancer programme. The
feasibility of the programme will be evaluated and adapted before delivering in
the main study.

The online Living with Cancer programme is a community based, peer-led
self-management programme designed to help patients with advanced cancer and
their family caregivers gain the confidence and skills to better manage the
consequences of the illness, and living their daily life with advanced cancer.
The Living with Cancer Programme concerns a 6 week self-management support
programme. The programme consist of 6 meetings through video communication,
each of 1 hour (with a break) per meeting and approximately 6 to 12
participants. Essential information (principles or explanations about a theme)
of the themes will be provided as homework, by short videos and readings.

The meetings will support participants in developing their self-management
skills: action-planning, problem-solving, effective communication and
decision-making. The meetings address relevant themes such as dealing with
fatigue, dealing with emotion and adapting lifestyle. An important component of
the programme is self-tailoring, which means that participants can decide which
problems they want to focus on. The primary aim of the meetings is that
participants share their experiences and best practices in brainstorm and so
called *pair and share* exercises, and support each other. Participants will
receive a syllabus for additional readings.

The programme will be facilitated by 2 facilitators. They will introduce the
themes and start the conversations.There will be a moderator available, who is
responsible for technical support.

Burden:
The programme consiste of 6 online meetings, 1 hour per meeting. An individual
meeting of approximately 30 minutes for explanation and testing the
videoconference application. Homework, by short videos and readings, 15 to 30
minutes each week.
Filling in a home diary about healtcare ulitilization and a weekly evaluation
of the meetings, 6 times. Filling in the home diary will take approximately 5
to 10 minutes.
Participants are asked to complete a questionnaire after the programme.
Completion of the questionnaire will take approximately 20 tot 30 minutes.
Participants will be interviewed after the programme. The interview will take
30 to 60 minutes.


Risks:
The themes of the programme of this pilot study may be perceived as emotional
and confronting. However, facilitators are trained to handle such situations.
Previous experiences show that participants find it pleasant and useful to
discuss their difficulties, challenges and experiences with peers in a safe and
supportive environment.