Self-management of persons with advanced cancer and their relatives (SMART): the Living with Cancer Programme

It is known that patients with advanced cancer need to deal with considerable
emotional, psychosocial and lifestyle consequences of their disease and its
treatment. Most of the time, patients, together with their relatives, need to
manage a huge part of their care and lives themselves, at home. This can be
highly complex and many are unprepared to do this. Interventions to support
patients and their relatives in their self-management have barely been
developed and studied. Therefore, we developed an online self-management
support programme for patients with advanced cancer and their relatives. The
acceptability and feasibility of this online self-management support programme
for patients with advanced cancer and their relatives were assessed and
confirmed in the SMART pilot study with 12 participants.

To evaluate the effectiveness of a peer-led, video-based self-management
support programme for patients with advanced cancer and their relatives. The
programme aims to improve the wellbeing of patients with advanced cancer and
their relatives, through improving their self-efficacy and self-management
behaviours.

The programme will be offered through a non-randomized stepped wedge design,
with outcomes evaluated at baseline, after 8 weeks and after 16 weeks.

The online Living with Cancer programme is a peer-led self-management programme
designed to support patients with advanced cancer and their relatives in their
confidence and skills to better manage the consequences of the illness. The
programme consists of six 1,5 hour video-based group meetings of 8 to 12
participants. Two peer-facilitators facilitate the meetings of the programme;
there is also one person available for technical support. Essential information
of the themes as discussed in the programme will be provided in short audio
clips with supported text, to allow participants to prepare for the meetings.
Essential information (principles or explanations about a theme) of the themes
will be given in short audio clips with supported text. Participants will be
invited to watch these before each meeting, to prepare. In addition,
participants will receive a digital syllabus.
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, living with uncertainty 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 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.

This study does not apply any invasive physical procedures.
Some of the topics of the Living with Cancer programme may be perceived as
emotional and confronting. However, previous experiences with the programme and
our results of the pilot study indicate that participants find it pleasant and
useful to discuss their difficulties, challenges, and experiences with peers in
a safe and supportive environment.