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Do we ask too much of the parents of children with long-term conditions?

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Rachael was surprised to read that the parents of children with special needs often feel they are too heavily relied on when their child is in hospital

Rachael Starkey Student Nursing Times editor

Student Nursing Times’ child branch student editor, Rachael Starkey


I’ve been writing one of the most painful essays of my life this month. It’s a research critique of an article and, long story short, it hurts my brain.

The topic of the article in question got me thinking though. It was a research piece studying how the parents of children with special needs feel about the nursing care their child receives when in an acute setting. The upshot is that nurses are pretty rubbish at communicating with these parents.

Obviously it’s not that simple, and there are many criticisms to be made of the study (which is handy for my essay), but it did make me consider times when I’ve seen disabled children on the ward and how they are dealt with by nursing staff.

While I was on placement, I spoke to a Mum who said the biggest problem was that on admission there is no role negotiation. Nurses tend to assume that the parent of a child with special needs is the “expert” and will continue to provide all care as they do at home.

Parents usually are experts, often having devoted their lives to understanding the specific condition or diagnosis that their child has. But this doesn’t by any means imply that they have a clue what’s going on when something goes wrong. An admission to hospital is usually caused by something out of the ordinary such as an illness, infection or deterioration of their condition, and can be as stressful, if not more so than for parents of non-disabled children.

In general, the nurses I’ve observed have been excellent at recognising the stresses that families are under when their child is admitted to hospital. They provide great family-centred care, communicate well, liaise with the doctors and generally trying to relieve those stresses as best they can.

So why, when a disabled child comes onto the ward, are the family more often than not “left to it”?

The Mum I was talking to suggested it was because she acted almost as an extra staff member. She was someone to provide one-to-one care to her child while the nurses were busy doing other things. She said she did not dare go home or even have a shower as she did not believe he would be looked after.

I thought this was one of the saddest things I’ve ever heard but wondered if it really was the case.

Was she needed there because the staff did not have time to spend with her son, or were they spending less time with her son because she was always there?

Either way, it was surely a case of miscommunication, one that could easily be avoided by finding out from the parent what they expect or want to do for their child while in hospital.

Some parents want to be involved as much as possible, with the nurses teaching them skills and involving them in clinical care, while others want to be able to separate their role as “parent” and have the nurses administer meds, give feeds etc.

Each family should be catered for accordingly if we are to provide true family-centred care, but open and non-judgemental communication both on admission and throughout their stay is key to striking the right balance.


Rachael Starkey is Student Nursing Times’ editor for child branch


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Readers' comments (1)

  • The best thing a nurse can do is ASK the parent what they would like in regards to care of their child. Be more aware of parents, reassure them that you'll be around whilst they have a shower, dinner or go fetch something from home. A nervous, stressed parent makes for a nervous, stressed patient.

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