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As a parent, your primary concern is always to do the right thing for your child. No parent wants their child to suffer because they failed to seek help.
But although protecting your child’s health is the primary social expectation you face as a parent of a sick child, there are also other, less clear social expectations. These expectations might leave you feeling unclear about where, when and how to seek help.
In my research I have found that parents reported being criticised for consulting a doctor too late – but also for seeking help too early in an illness. One mother explained that:
We’ve all taken a sick child to the doctor only to be pooh-poohed away, you know, Calpol for the next two days and the child will be fine and then you feel silly … So I think you get a reluctance that builds up.
This mother had learnt the social rule that you are expected to contain minor childhood illnesses within family life. This sounds obvious, but it leaves parents needing to determine whether or not an illness is minor or serious.
Breaching this social rule can lead to criticism, mostly from health professionals but sometimes also from grandparents, nursery staff and teachers, and a feeling that your moral character has been judged and found wanting. This can lead some parents to feel a loss of self-esteem, and can make them question their own judgment.
Parents’ experiences
I worked on a project exploring what happened to children before they were admitted to hospital with a serious infectious illness. Parents in the study shared experiences of consulting a health professional early in the course of their child’s illness.
During these consultations parents were told to “bring him back if he gets worse” or “come back if you are worried”. Neither instruction was helpful. There was no information given to help them know how much worse their child should be before bringing them back again, and they were already worried.
What the parents were left with was the feeling of having sought help at the wrong time in the course of the illness. In some cases they were overtly criticised for using the health service when their child was not considered sufficiently ill. One parent said:
She [the nurse] said that A&E is emergency only and it’s not just to be used really. And it just made me feel really rubbish.
These experiences lead parents to avoid future criticism like this. They might avoid using a particular health service again, delay seeking help until their child is very obviously seriously ill, or seek help from those who were less likely to criticise – such as family members, complementary therapists or other parts of the health service.
For instance, if a parent feared criticism from their GP, they might take their child to A&E instead where they might then face criticism for taking using the wrong service at the wrong level of illness.
Lack of trust
Social class and hierarchy can also affect whether parents feel comfortable seeking help. Some parents talked about feeling labelled as incompetent, less knowledgeable, neurotic or overanxious, and consequently felt their concerns were dismissed.
Health service design and staffing problems also add to parents’ difficulties. Parents can be confused about which services to use and when.
Not only are services different for different levels of illness, but the landscape of services is inconsistent across the UK. For example, some areas provide urgent care or walk-in services and others do not. Some areas have a specialist children’s hospital but most do not.
Services are fragmented and there is little continuity of care. When we asked parents about their child’s illness journeys, they rarely reported seeing the same health professional more than once during one episode of their child’s illness.
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Not only does this lack of continuity lead to a loss of trust between parents and health professionals, but it also impairs the professionals’ ability to detect signs of deterioration in a child if they did not see the child earlier in the illness. Not everything in a consultation can be recorded in the child’s notes.
Working in busy services with insufficient staff to meet demand can also affect health professionals’ ability to hear parents’ concerns and to spot the few very ill children, for example with meningitis or sepsis, among the larger number of children with minor illnesses. Not only parents but also some health professionals miss signs of serious illness in the children concerned.
Parents in our projects shared strategies they had used to secure the healthcare their children needed. These included tracking changes in your child over time, seeking information about your child’s symptoms and local services, and asking again if you feel you have not been heard.
But social expectations, social hierarchies, inconsistent and fragmented services and limited numbers of professionals qualified in child health all contribute to the difficulties parents face. It can be a struggle to decide what is the right level of illness, right place and right time to seek help for your child.
Sarah Neill received funding from WellChild charity for some of the research reported here and the BeArH project was independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0416–20011). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.