Mental health treatment in the CF Center

1. Cognitive Behavioral Therapy by the psychologist of the CF team

Content of sessions*

• Overview and Introduction to CBT
• Relaxation training
• Psychoeducation about depression and prevention/Behavioral Activation;

Psychoeducation about anxiety and prevention/facing fears

• If applicable: Eye Movement Desensitization and Reprocessing (EMDR)
• Adaptive coping skills; e.g. cognitive restructuring (“helping thoughts”), open communication about CF
• Problem-solving skills to address barriers to personal goals and self-management
• Maintaining positive changes

Frequency and duration*

6-8 weekly or biweekly 45-minutes individual CBT sessions

2. Counselling by the social worker and/or psychologist of the CF team

Content of sessions*

• Developing self-knowledge, emotional acceptance and growth, and personal resources to empower the caregiver
• Resolving specific problems
• Making decisions (e.g. regarding balance, practically and socially)
• Coping with crisis and exacerbations or hospitalizations
• Parental support in day-to-day care and parenting at home (e.g. how to give the child own responsibility concerning medication)
• Working through feelings (e.g. bereavement) or inner conflict (e.g. feeling guilty) or improving relationships with others (e.g. parents-children, husband-wife).

Frequency and duration*

Low frequency (about once in 3-4 weeks), combination of face-to-face sessions in the hospital, home visits and telephone calls mostly during one year.

1. Welcome

Explain procedure, introduce psychologist and social worker in case of new parents

2. General background

As we begin our interview, we would like to learn a bit about you, your family and your

child with CF.

Family

• How’s your family composition? If applicable: how are the other kids doing? Do you have other family and how are your relations with them?

Development of the child

• Tell me about your child: Can you describe the general functioning of your child? How would you describe him/her (temperament and behavior), and how is he/she developing (eating/sleeping/motor and cognitive development and other general development milestones)?

You

• Do you have any employment? If yes, what kind of job, where and how many days a week? Do you have any hobbies? Do you have social contacts?

3. Cystic Fibrosis: psychological impact of the disease in daily life

Having a child with CF can be a heavy burden. We would like to know how you cope with it.

• New parents: how did you learn that your child has Cystic Fibrosis? What were your reactions? How do you cope with that (e.g. bereavement)?
• What has having a child with CF been like for you and your family?
• How do you balance caring for your child’s CF with other demands in your life?
• Who helps you manage your child’s CF (i.e. partner, parents, extended family)? Do you receive any social/family support?
• How do you organise the daily care (work/day-care of the kids)? Is your work/life/leisure balance ok for you?

Your child with CF

• How would you describe the severity of your child’s CF?
• How does your child cope with the CF (e.g. avoidant or active coping style)?
• Regarding self-management and adherence: what does your child already do by himself/herself to manage his/her CF? What is going well? Are there any problems? What is difficult for you?

4. Discussion of PHQ-9 and GAD-7

• How did you feel about answering these questions?
• How can you explain the high scores on items……? What is exactly the problem, what happens? How long does this already exist? Do you suffer from it? What have you already done to solve it?

5. Referral treatment

• We know it can be helpful to talk to a social worker/psychologist about these problems. Are you open to do so?
• Do you already have (had) psychological help? What are your experiences?
• Our advice: referral treatment pathway. Coordination of referral if applicable.

6. End of clinical interview

• Do you have other concerns? Other questions? NB: Tell the parents what the psychologist/social worker can offer.

Procedure

• Which information can be shared in the multidisciplinary CF-team?
• Next appointment and follow-up (e.g. screening)

1. Welcome

Explain procedure, introduce psychologist in case of new patient

2. General background

As we begin our interview, I would like to learn a bit about you.

• How’re you doing?
• How is it going at school? Which class/level? Do you like it?
• Do you have (good) friends? Relationships (and sexuality)?
• Do you have a side job? Hobby’s/sport: what do you like? How is your school/work/life/leisure balance for you?
• What are your plans and dreams for the future?

3. Cystic Fibrosis: psychological impact of the disease in daily life

I also would like to talk with you about your CF.

• How would you describe the severity of your CF? Have you been hospitalized last year and how did you feel about it? Evt check trauma (use of additional questionnaires).
• How do you cope with lack of energy? What do you miss due to the disease? How do you think and feel about that?
• How are you doing regarding sleeping? Eating?
• Who knows about your CF? What are the reactions in your peergroup/family? How do you cope with that (e.g. avoidant or active coping style)?
• What is having CF like for you and your family?
• Self-management and adherence: what do you have to do for your CF care? What do you already do by yourself to manage your CF? What is going well? What is complicated? Who can help you with that?

4.  Discussion of PHQ-9 and GAD-7

• How did you feel about answering these questions?
• For every high scored item: Can you tell me a little bit about this…?What is the problem exactly, what happens? How long does this already exist? Does it bother you? What have you already done to solve it?

5.  Referral treatment

• We know it can be helpful to talk to a social worker/psychologist about these problems. Are you open to do so? Do you already have (had) psychological help? What are your experiences?
• Our advice: referral treatment pathway. Coordination of referral if applicable.

6.  End of clinical interview

• Do you have other concerns? Other questions? NB: Tell him/her what the psychologist can offer.

Procedure

• Which information can be shared in the multidisciplinary CF-team?
• Next appointment and follow-up (e.g. screening)