{"id":429,"date":"2016-11-24T11:18:05","date_gmt":"2016-11-24T11:18:05","guid":{"rendered":"https:\/\/blogs.edgehill.ac.uk\/comment\/?p=429"},"modified":"2016-11-24T11:18:05","modified_gmt":"2016-11-24T11:18:05","slug":"how-caring-for-a-child-with-complex-health-needs-can-be-both-isolating-and-extraordinary","status":"publish","type":"post","link":"https:\/\/blogs.edgehill.ac.uk\/comment\/2016\/11\/24\/how-caring-for-a-child-with-complex-health-needs-can-be-both-isolating-and-extraordinary\/","title":{"rendered":"How caring for a child with complex health needs can be both isolating and extraordinary"},"content":{"rendered":"
Parent and carer.Author provided<\/figcaption><\/figure>\n

Bernie Carter<\/a>, Edge Hill University<\/a><\/em> and Lucy Bray<\/a>, Edge Hill University<\/a><\/em><\/p>\n

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\u2019t know you would need.<\/p>\n

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 \u2013 but it does.<\/p>\n

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 \u201cordinary\u201d parenting, these parents have to be constantly vigilant<\/a> about their child\u2019s fragile health.<\/p>\n

So imagine that \u2013 instead of keeping an eye on your child to check that they are not getting into too much mischief \u2013 every time you look at your child you are also undertaking a rapid head to toe clinical assessment. You\u2019re 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 \u201call is (relatively) well\u201d or \u201csomething is wrong\u201d.<\/p>\n

Sounds stressful, right? But parents learn fast. Initially these assessments can feel overwhelming, because deciding if your child is in pain<\/a> requires specific skills and knowledge<\/a>. But although parents can feel unequipped to notice subtle signs of their child\u2019s changing health, their fierce desire to protect and care for their child means they soon become attuned to the slightest shifts in their child\u2019s behaviours.<\/p>\n

Each parent starts to know their child\u2019s \u201cdanger signs\u201d. 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.<\/p>\n

But despite all the knowledge and skills these parents gain, these decisions are difficult<\/a> \u2013 and are something of a balancing act. One mother we spoke to explained that her son is \u201clike a Rubik\u2019s Cube\u201d \u2013 one change shifts everything.<\/p>\n

Not a nurse but\u2026<\/h2>\n

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 \u2013 both as a parent and a \u201cnurse\u201d.<\/p>\n

The brilliant #notanursebut<\/a> campaign was launched on carers rights day<\/a> in 2015. And the videos the parents have made \u2013 as part of the campaign \u2013 provide a real insight into the everyday complex clinical skills that parents have to undertake.<\/p>\n

[youtube https:\/\/www.youtube.com\/watch?v=uqVKEerOYAQ?wmode=transparent&start=0]<\/figure>\n

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 \u201ccaring parent\u2019s\u201d world, these things have to happen alongside managing complicated medicine regimes and sorting out special tube feeds.<\/p>\n

Exhausted and isolated<\/h2>\n

Most mornings, parents are doing this having had another night\u2019s sleep broken by the need to attend to their child\u2019s ongoing treatment. Parents become exhausted and the clinical aspects of the care can feel burdensome<\/a> \u2013 but our research shows that parents often feel that they have been \u201cleft to get on with it\u201d<\/a>.<\/p>\n

This persistent level of sleep deprivation<\/a> can be relentless and draining<\/a> and can take a toll on parents<\/a>.<\/p>\n

There is also plenty of evidence that shows that parents of children with complex healthcare needs experience higher levels of social isolation<\/a> and depressive symptoms \u2013 with poorer levels of physical and mental health<\/a> than parents whose children do not have complex health needs.<\/p>\n

This is particularly the case for immigrant parents<\/a> who struggle to access resources because they have fewer connections within their communities.<\/p>\n

Persevering and reaching out<\/h2>\n

But in spite of the stress they experience<\/a>, 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.<\/p>\n

And our research with Scope\u2019s Face2Face<\/a> befriending scheme shows how parent to parent support can help people feel stronger, more confident and more able to deal with the challenges.<\/p>\n

Parents of children with complex healthcare needs take parenting to higher levels using extraordinary skills. Parents persevere<\/a>, they are tenacious, resilient and amazing, but we musn\u2019t 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.<\/p>\n

\"The<\/p>\n

Bernie Carter<\/a>, Professor of Children’s Nursing, Edge Hill University<\/a><\/em> and Lucy Bray<\/a>, Reader in Children, Young People & Families, Edge Hill University<\/a><\/em><\/p>\n

This article was originally published on The Conversation<\/a>. Read the original article<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

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