Therapy weariness

Question

Dear Expert Team,

fortunately, our daughter (18) is pretty fit despite having CF; she was diagnosed early and has gotten intensive therapy – inhalation, sports, physical therapy, drugs, etc.

Despite Pseudomonas and seasonal aspergillosis, her weight-for-height percentage is above 100.

She has been letting therapy slide for some time now; apart from taking pancreatin with her meals, there is almost nothing going on.

During the past years, we as parents have made sure she got therapy – reminded her of it more or less, etc.

This, however, is increasingly leading to fights or to resignation on our part. Every once in a while at the doctor’s, she is showing some intention to start doing sports again, etc., but she never actually does it then… During rehabilitation therapy she cooperated well, but at home she did nothing.

What should we do? Do we just have to wait and see…?

Thanks and regards.

Answer

Dear questioner,

I am sure you are not alone in your concerns about a sick child who does not want to hear anything about therapy at this point.

Concerned parents of pubescent juveniles often report that their children are interested in all kinds of things but household and school chores, and particularly not in therapy.

You surely have been very anxious about sticking to the recommended course of therapy, probably also accepting personal constraints while doing so. And now suddenly your daughter is sick of things and wants to control her body herself, to decide for herself if, when, and how she wants to do therapy.

This is actually a phase of life and a process everyone goes through when they move from childhood to adulthood. It is a completely normal attempt of your daughter to set herself apart, if it weren’t for the fear that her health might deteriorate due to the lack of therapy.

What could you, as parents, do against your daughter’s being weary of therapy?

Talk to your doctor again and ask him for help. A long-term everyday therapy is hard to maintain simply by following orders (“Take the pills,” “Inhale now”). If she has not already done so, your daughter should actively be involved in developing the therapy schedule by the doctor. That is, she should get counselling in a way that she can make her own therapy decisions, which would accommodate her wish for a greater degree of self-determination. Also, her interests should not be discounted. However, of course, the health situation should have priority.

Please also check you daughter’s level of knowledge of the disease and explain to her again why certain therapeutic measures are necessary. She might not have all the knowledge you as parents have gained over the years.

Negotiate a personal therapy schedule with her that she is willing to adhere to (consult and involve your doctor if necessary), and also talk to her about possible consequences if she fails to comply with that schedule (e.g., necessary antibiotics therapy, in-patient treatment in case of deterioration).

Perhaps there is also the possibility of offering your daughter a conversation with a psychosocial specialist in an outpatient clinic?

I wish you much strength in accompanying your daughter in this difficult, though normal, phase. Have confidence in her!

Kind regards

Nathalie Pichler

22.01.2009