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Table 2 The treatment modules of the PowerMe intervention

From: Blended cognitive behaviour therapy for children and adolescents with mitochondrial disease targeting fatigue (PowerMe): study protocol for a multiple baseline single case experiment

Module Type of module Content
‘What does your day look like?’ Obligatory Assignments to guide the treatment plan:
Two diaries will be filled out: an activity diary and a sleep diary. The patient will record all activities and rate the fatigue after the activity and enjoyment of the activity. Periods of rest will also be recorded. The sleep diary records among others bedtimes, hours of sleep and quality of the sleep. Both diaries will be filled out for 1–2 weeks. Furthermore, the patient can already write down ideas for possible treatment goals.
‘Knowledge’ Obligatory The patient will learn more about MD, fatigue related to MD and the PowerMe intervention. It is important that the patient learns information about MD and fatigue that is reliable. Unrealistic ideas about their disease or fatigue can promote unhelpful thoughts and safety behaviours.
‘Thinking, feeling, doing’ Obligatory, including optional assignments The main focus of this module is the relationship between thoughts, feelings and behaviours in difficult situations, and practicing helpful thoughts.
Optional assignments: (1) challenging negative thoughts, (2) identifying cognitive biases and (3) a thought experiment.
‘My battery’ Obligatory, including optional assignments Information and assignments focused on using their energy more optimally:
- Activity diary: Scoring activities and finding ways to change their activities to feel less fatigued (e.g. changing very exhausting activities, different types of rest, balancing between high and low energy activities)
- Working on activity-related goals using step-by-step plans
- Coping with necessary and/or fun, but exhausting activities
- Helping thoughts
‘Sleep’ Optional Information and assignments about problematic sleep-wake rhythms and sleep hygiene:
1) Making and following a consistent sleep schedule keeping into account: hours of sleep during the night and bedtimes during weekdays and the weekend.
2) Changing problematic sleep hygiene/sleep habits
3) Assignments related to ruminating (thinking helping thoughts, writing down their thoughts, planning 15 min at another time to think things over, relaxation exercises)
‘Me and others’ Optional Assignments related to communicating about their fatigue and MD.
1) Practice reactions to difficult questions or remarks, either by talking about their disease or reacting assertively.
2) Problem solving, which can focus on a wide range of problems.
3) Communicating their boundaries to help them keep balance between activities and rest.
‘After the treatment’ Obligatory Together with the therapist, a plan will be made on how to deal with (consequences of) fatigue in the future. Also, the treatment will be evaluated. By writing down the relapse prevention plan within the PowerMe website, all information will be easily found by the patient after the treatment has ended.
‘How can I coach my child?’ Parental module Parents have the opportunity to coach their child in daily life, whereas the therapist only has weekly contact with the patient. Tips and tricks are provided to help parents support their child during the treatment.