Life Balance: Intervention study

About 60% of persons with neuromuscular diseases (NMD) experiences chronic
fatigue. Fatigue management programs, like the occupational therapy program
*Managing Fatigue* support persons to plan, pace and prioritize activities and
to find a balance in activities in daily life. A group intervention on managing
fatigue has been developed and tested in different populations including
multiple sclerosis. However, not everyone has access to such a group program.
Recent studies on a one-to-one fatigue management course have promising
results, but have merely been tested among people with MS. There are no studies
available for individual *Managing fatigue* programs for people with
facioscapulohumeral dystrophy (FSHD) or mitochondrial myopathy (MM)
experiencing chronic fatigue.

To evaluate experiences with and fidelity to the individually delivered
Managing Fatigue (MF) program of community based occupational therapists and
patients with FSHD or MM.

Secondary aims:
Participants:
- To detect which strategies of the MF program are considered valuable for
participants and are being implemented in the participant*s situation.
- To evaluate barriers and facilitators to adhere to the program and to
implement the strategies in daily life
- To detect which elements of Managing fatigue are missing in the MF program
- to evaluate experiences with face to face delivery and/or delivery using
videocalls
Therapists:
- To evaluate which skills and knowledge therapists need, to be able to deliver
the MF program.
- To detect barriers and facilitators to deliver the MF program.
- To evaluate considerations and choices made to deliver the program
face-to-face or using videocalls.

A mixed method study with qualitative and quantitative methods:
- interviews and focus groups to evaluate therapists* and participants*
experiences with and fidelity to the MF program;
- log books and questionnaires on delivery and fidelity to the program;
- semi-structured interview using the Canadian Occupational Performance Measure
(COPM) to assist in goal setting and evaluation of the intervention and
- a questionnaire called the Self-Efficacy in Performance of Energy
Conservation Strategies Assessment. (SEPECSA)

The individualized one-to-one MF program consists of information, education,
practice, evaluation and implementation of energy conservation strategies in
daily life. Persons are invited to gain experience with the strategies and
discuss the successes and barriers experienced and make action plans and coping
plans for the different strategies. While this intervention was originally
developed as a group intervention, in the Life Balance Study (Libas) this
intervention will be delivered as an individual face to face intervention,
delivered by occupational therapists in primary care.

Participants (n=30) will receive 6 to 10 sessions of the Managing Fatigue
program. This program will be delivered individually face-to-face or online
(videocall) by an occupational therapist in the patient*s own environment. The
intervention involves education, practice and homework assignments. Assessments
supporting the program (COPM and SEPECSA) will take place at the beginning and
ad the end of the intervention (twelve weeks after start of intervention). The
measurements are non-invasive and will take place at the participants* home or
by videocall. Evaluation includes participation in interviews (at participant*s
home or by videocall). Sixteen participants will be invited to take part in an
interview to share their experiences with the intervention. There are no
medical risks involved.
The therapists involved will be invited to participate in focusgroups (2 groups
of 8 therapists each) to evaluate the delivery and experiences with the
MF-program.