Counterintuitive kind of caring
Parents described how they had tried to care for their child during his/her long-term strains of
symptoms and how they intuitively resorted to both increasing care and to seeking help in the face of the child – distress due to the functional disorder. However, after the youth entered specialized treatment in the paediatric department, the paediatricians’ treatment recommendations directed parents to, for example, pay less attention to symptoms or refrain from calling an ambulance during functional seizures, with the argument that this could actually reinforce the symptoms.
This kind of care for a child with a functional disorder could be counterintuitive to parents.
Naja’s functional disorder started with stomach pain and low appetite after mononucleosis.
Before admission to the paediatric department, Naja’s mother had intuitively focused on making
sure that her daughter had enough to eat to avoid losing weight in spite of Naja’s food refusal.
Naja’s
mother:
‘Because until we were admitted, I almost spoon-fed her, and I kept her weight rather
stable. When we came here (to the paediatric department), I was told to withdraw
entirely, right. And then she lost weight rather quickly and she has lost 5 kg. [ . . . ] And
even though I can understand it, with my logic, you are still like, are you absolutely
sure?’
In the paediatric department, Naja’s mother followed the advice and the instructions given by
HCPs about providing care for a child with food refusal due to a functional disorder by not feeding Naja. However, she was ambivalent about this advice. Naja’s mother intellectually understood the rationale for the different kind of caring through shifting focus away from symptoms and therefore followed the instructions. Still, it was emotionally challenging as she felt uncertain and caught between following her intuition for caring for her child, reinforced by Naja’s weight loss and a professional dialogue that undermined her care and redefined appropriate care.
Paediatricians further instructed parents to handle symptoms at home as part of a strategy to
direct parental attention away from symptoms. Hanna had a history of repeated functional seizures, followed by days or weeks, where Hanna was unable to walk. Hanna’s mother had been advised by HCPs to avoid hospital contacts and not to call an ambulance when Hanna had seizures, which was challenging as Hanna’s mother struggled with the responsibility of dealing with symptoms at home. Hanna’s mother described an episode, where Hanna had seizures in the home and a neighbour tried to help.
Hanna’s
mother:
‘And she [the neighbour] said after 10 minutes, we have to call an ambulance. And I
said we couldn’t do that, we are simply not allowed to. Because it is not dangerous. I
think that is difficult, really difficult. It is really difficult because they say that it isn’t
dangerous. Just make sure that she doesn’t swallow her tongue when it happens, just
slap her if she stops breathing, do this, do that. But it is not dangerous. [ . . . ] And that
is a huge responsibility to give to us [the parents]’.
Hanna’s mother felt that treatment entailed ‘not allowing’ her to call for help, which increased
her sense of responsibility in relation to child and symptom care. However, the increased sense of responsibility was not accompanied by a sense of capability, resulting in uncertainty and
ambivalence about adhering to treatment recommendations. Hanna’s mother did not feel
empowered to deal with symptoms, rather she felt disempowered and alone when following the paediatrician’s directions.
Emotional strains on parents were, nonetheless, also seen to be reduced through the positive
experience of dealing with symptoms at home as exemplified by Louise’s parents. Louise had a
short history of functional seizures, which were triggered by physical trauma or pain. After two
admissions, the parents were guided by paediatric HCPs to handle symptoms at home, which
initially concerned them. However, they found that they could successfully handle the symptoms, as in the following episode where Louise’s knee was hurt.
Louise’s
mother:
‘And she wanted to sleep right away, but I held her up and she kind of fell down once in
a while. And I tried to tell her, Louise you don’t need to sleep. Try to have some water.
And after 20 minutes, she woke up again and she was fine. [ . . . ]
Louise’s father: and I do feel that we have learned a lot, I mean we have learned how to deal with this’.
By avoiding hospital contact, the symptoms were less severe, and they passed faster than during previous episodes. Louise’s parents described a sense of competency gained by receiving relevant knowledge in the paediatric department, which increased acceptance of the role they were given in dealing with symptoms at home. The fact that Louise’s symptoms were easily predictable as they were always triggered by physical pain might possibly have had a positive influence on their sense of mastery as well.
Parents could feel uncertain and ambivalent about following treatment recommendations for
functional disorders, which were at odds with their intuitive ‘caring’. When ‘caring’ becomes part of treatment, professionals enter an otherwise parental domain and provide directions about ‘the right kind’ of care, which may indirectly imply that parents have provided a ‘wrong kind of care’.
A clear symptom trigger, a shorter illness history and successfully dealing with symptoms early
