How caring for a child with complex health needs can be both isolating and extraordinary

Caring for your child can be tough work. shutterstock

Very few people would describe being a parent as easy. Not only does it require a shift in perspective so that your child, or children come first, but it also draws on knowledge and skills you didn’t know you would need.

Who would have thought that being able to remember the names of Pokemon characters or being able to spread Marmite onto a slice of toast in exactly the right way would ever come in useful – but it does.

However, parents who have a child with complex healthcare needs face a much steeper and more challenging learning curve. Because on top of the usual skills and worries of “ordinary” parenting, these parents have to be constantly vigilant about their child’s fragile health.

So imagine that – instead of keeping an eye on your child to check that they are not getting into too much mischief – every time you look at your child you are also undertaking a rapid head to toe clinical assessment. You’re checking their colour, their level of comfort, their breathing, their position, their expression, as well as using your sixth sense to determine whether or not “all is (relatively) well” or “something is wrong”.

Parent and carer. Author provided

Sounds stressful, right? But parents learn fast. Initially these assessments can feel overwhelming, because deciding if your child is in pain requires specific skills and knowledge. But although parents can feel unequipped to notice subtle signs of their child’s changing health, their fierce desire to protect and care for their child means they soon become attuned to the slightest shifts in their child’s behaviours.

Each parent starts to know their child’s “danger signs”. So they know for example that this little rattle in his chest is fine, but that chesty cough is likely to be the start of something serious. And by making hundreds of little decisions about their child, they develop expertise and confidence. They learn to know when all is well, or when to call their community nurse, contact their doctor or ring for an ambulance.

But despite all the knowledge and skills these parents gain, these decisions are difficult – and are something of a balancing act. One mother we spoke to explained that her son is “like a Rubik’s Cube” – one change shifts everything.

Not a nurse but…

In our research, parents spoke to us about how their role as a mother or father is often overwhelmed by all of the clinical tasks they have to undertake. Some of these parents told us about the dual nature of the role – both as a parent and a “nurse”.

The brilliant #notanursebut campaign was launched on carers rights day in 2015. And the videos the parents have made – as part of the campaign – provide a real insight into the everyday complex clinical skills that parents have to undertake.

All of this takes the role of parenting well beyond the ordinary and into something extraordinary, especially when a child with complex healthcare needs has brothers or sisters. And while typical school mornings are the usual challenge of getting children out of the house on time, with the right bags, shoes and PE kit and onto the right bus, in a “caring parent’s” world, these things have to happen alongside managing complicated medicine regimes and sorting out special tube feeds.

Exhausted and isolated

Most mornings, parents are doing this having had another night’s sleep broken by the need to attend to their child’s ongoing treatment. Parents become exhausted and the clinical aspects of the care can feel burdensome – but our research shows that parents often feel that they have been “left to get on with it”.

This persistent level of sleep deprivation can be relentless and draining and can take a toll on parents.

There is also plenty of evidence that shows that parents of children with complex healthcare needs experience higher levels of social isolation and depressive symptoms – with poorer levels of physical and mental health than parents whose children do not have complex health needs.

This is particularly the case for immigrant parents who struggle to access resources because they have fewer connections within their communities.

Persevering and reaching out

But in spite of the stress they experience, many parents talk of how their situation changes them for the better. They become more insightful and empathetic, and they want to support other parents facing a similar situation.

And our research with Scope’s Face2Face befriending scheme shows how parent to parent support can help people feel stronger, more confident and more able to deal with the challenges.

Parents of children with complex healthcare needs take parenting to higher levels using extraordinary skills. Parents persevere, they are tenacious, resilient and amazing, but we musn’t forget that these parents can also feel isolated and lonely. And it is by reaching out that we can help these parents to feel less alone in the day to day challenges that are being a parent.

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