Impact upon daily life
The parents described how the periodic fever impacted upon the child and themselves in different ways. The child’s suffering, as described by the parents, was mainly related to PFAPA symptoms during the episodes. A general impaired condition, difficulties in feeding the child and sudden changes owing to symptoms like vomiting caused practical problems. This resulted in parents worrying about the long-term effects on their child’s physical wellbeing and weight development.
I have to go round carrying him all the time because I…yes, among other things I want to keep an eye on him because I know that too high a temperature is no good. If he needs to go to the toilet – or if I need to – I have to take him with me, because he doesn’t have the energy and he’s really miserable and tired. (I:7).
The parents felt they needed to be prepared to treat the child with antipyretics to avoid fever-related symptoms. Some parents reported their child suffering from impaired general health between the episodes, owing to the short time lapses for recovery. The children’s mood seemed to be more or less affected the days before a fever episode but also some days after.. Moreover, the fever could be followed by decreased appetite and activity. Parents tried to use the time between episodes to compensate for insufficient nutritional intake during episodes. Parents also perceived the condition as having a social impact on the child’s daily life, as recurrent absences from daily activities, nursery school, school and leisure activities could lead to impaired social interaction and isolation.
Because he’s ill so much, and starting a new class, it affects him a lot socially. Because as soon as he starts to play with someone, he’s away for a week, so it feels like you kind of become a bit unreliable. It can be difficult to get in with a group of friends. (I:1).
Moreover, parents stated that the family could become more or less isolated due to frequent cancelling of social events, but also because of the exhaustion that followed the child’s recurrent illness episodes. In the Facebook group, parents shared their experiences of exhaustion with each other:
People, the pediatrician and specialist always try to be sweet and say he will most likely outgrow it so as to say, no worries. But how much can a young child really bear and how much can a mother/ family take? (FB).
Gets so exhausting, our little guy gets it every 19 days for 5–6 days so we usually only get a 14 day break. I really feel like I am drowning lately. (FB).
Parents experienced work-related challenges in terms of dealing with frustrated colleagues and managers who had to replace them during recurrent sick-leaves. For some parents, it became more or less impossible to maintain their jobs. In the Facebook community, parents discussed how they tried to solve this unsustainable situation in daily life:
My question for everyone is how do you manage time out of work? I’ve worked only 2 full weeks since mid-January and hearing this may be our new normal until she grows out of it. It scares me. Anyone have to quit work because of the frequency? (FB/February).
Fortunately, I stay home. There is no way I would be able to hold a position with him being sick so often. My husband was traveling often for work and had to take another position. (FB).
Parents also shared stories of missed opportunities in their professional career because of the consequences of their child’s disease. For example, in order to manage the family situation, they hesitated to take on a career opportunity or considered leaving a position they had already reached.
He (the father) had just got a new job – a new position as head of projects – before she got ill but…he felt he had to be at home a lot because I…in the beginning I was at home the most but then he had to be at home a lot too; we had to start sharing it, so he felt that he couldn’t fulfil his duties that well…that he had hit the wall. (I:2).
As described in the quote above, parents had to adjust to solve these problems in daily life, and in so doing, they were at risk of health problems themselves. Work-related challenges also appeared to be problematic even when one of the parents was on parental leave or a ‘stay at home’ parent. Although many parents described a lack of understanding among employers and colleagues, some experienced more considerate and accepting behaviours in their workplace:
They’ve even been able to say to me: ʻSo when is your child going to be sick again? Because we’re planning the schedule now’ (I:7).
Regularity – unpredictability
Most parents described the fever episodes as appearing with a certain regularity. Although the child’s condition and its consequences were frustrating and problematic, this regularity was sometimes helpful in daily life, since activities and events could be planned according to the episodes.
Yes, there’s between two, three weeks (between fever episodes). But for a while it was like that – because I work in a school – so it was like: ʻthis week it’s been good so Wednesday, Thursday… so sometime next week I can count on going home.’ So then it was like you could think about it beforehand (I:5).
It’s nice to know I’m not the only one that has a Friday- Monday child, she usually starts Friday evening which is too late to drive her to Boston. I don’t work Fridays either so it would be perfect if she started on Thursday night instead, ha-ha (FB).
Others experienced a more unpredictable occurrence of fever episodes. The illness could change from a regular to a more unpredictable pattern over time. The practical advantages of the regular pattern became evident when this regularity was interrupted by treatment with steroids, or when the child got a viral infection between the episodes, which in both cases hampered planning.
During the interviews, the parents described how they resolved sick leave duty during episodes by either sharing the responsibility equally, for example by taking every other day, or by deciding according to assignments at work, workload, financial consequences and/or any other practical reason. Shared responsibility was less evident in the international context of Facebook interactions, where it was mostly mothers interacting and commenting that they took primary responsibility for the care of the child during episodes.
But we try to work it out and see who has the most to do, who’s finding it the most difficult to get away. So that we still have…I’ve probably taken on more because I’ve been free one day a week, but he’s been home absolutely – yes almost half the time I’d say. (I:2).
The fever started in the morning, it wasn’t an evening thing – she had fever when we woke up and by then my hubby had already gone to work so I was the one who stayed at home. And it was the financial situation we thought too: he earns a lot more than me and so we benefit from him going to work. I’m used to taking care of kids…we haven’t even talked about who should stay at home, it’s usually me. (I:5).
What was a sometimes unsustainable situation for the child and the family led to considering more active treatment options such as steroids and eventually surgery, i.e., tonsillectomy. Parents appeared to be aware that steroids could be used to abort a single episode at an unsuitable time, but many expressed doubts about the effects and consequences of this alternative. Sometimes they described how steroids could shorten the interval between episodes.
My little boy will be 2 on Friday, and his tonsillectomy is next Thursday, I am uneasy about it but our life is not a life anymore. Steroids have also brought fevers closer, every 2 weeks or less. (FB).