The stigma of children’s nursing and the word “hospice”.

Telling people that you are a student nurse can go a few ways. Telling people you are a student children’s nurse generally goes two: “Oh do you just play with them all day?” or “Oh that must be so sad. I couldn’t do it.”

The play one I just go with. Yes, part of being a children’s nurse is play. Play is an incredibly important part of child development, distraction and therapy. But we also have to do necessary procedures that aren’t particularly pleasant and breaking the trust you have built with a child can be awful, no matter how many times you have explained and been honest. This is especially true for children who are in hospital a lot. It’s probably my least favourite part of nursing really. (My first NG tube insertion still haunts me a bit until this day).

Then it’s the pity response. Yes, children’s nursing can be sad but so can adult, mental health and learning disability nursing. So can being a carer or support worker. I often have to explain to people that it’s relatively rare to have children die because they have “new” bodies! However, death does happen and this is a part of life as sad as it can be. This is where I lead from one little stigma to another: children’s hospices. 

When the word “hospice” is bandied about people will instantly think end of life and usually cancer. A children’s hospice is classified as somewhere which will care for children with life-limiting or life threatening conditions or illnesses. It provides palliative, end of life care and short breaks. The vast population of children’s hospices are children with profound and multiple learning disabilities (PMLD) as many have conditions which are life long. Life limited may not mean they will die in the near future but that it is a possibility of a shortened future. Life threatened could mean a child with a tracheostomy because trachies are complex and could threaten life or it could be a child with epilepsy. Many of the children have highly complex needs such as gastrostomies, nasogastric tubes, tracheostomies, catheters etc which need a nurse present in case something where to go wrong. Hospices are a valuable resource – they provide short breaks for the children and their families on a relaxed home from home basis. There are no set visiting times, parents or carers can even stay with their child if they want too. Many hospices have facilities so that families can stay close by but still spend time outside of the hospice, perhaps with their other children if they’d like. The other positive aspect of hospices is that it is a place that children can be safe and happy. I am aware that many children with tracheostomies are unable to go to nursery or mainstream schools because of their medical needs. This is where a hospice can provide care, family support and stimulation. 

I think the media plays a huge part in this perception of a children’s hospice and the dying child. Stereotypically, it is a child with cancer. What I have experienced in my first year as a student is that it is usually children with complex needs – a degenerative syndrome with short life expectancy or a complication which has resulted in brain injury and a non-responsive state. I am aware I am sounding like the grim reaper but I think it’s important to talk about death and dying and speaking about the unspeakable – death of a child. Palliative care and quality of life should be as of much importance for children as it is for adults and it is a subject which should be more researched and spoken about.

On a positive spin to this possibly negative post (depending how you read it!), I have seen two children on the ward with overwhelming sepsis pull through to be completely unharmed physically and intellectually. I’ve seen tiny babies survive heart surgery. Medical advances and the skills of the medical and care team obviously contribute to this but it is still completely astonishing what children can survive. Another huge aspect of children’s nursing is of course the families and carers. I am astounded every time I am on the ward of the dedication and strength that parents/carers manage to have when their child is very poorly. I have seen them come to terms with poor diagnoses, stay awake for days in a row to be with their child, stay strong and positive when they keep being given bad news over and over, see and feel their relief when they can finally be discharged – whether that is to live or to die. It truly is amazing what humans can do.

This is what makes children’s nursing for me. 

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Children’s hospice week falls on the 13th-20th June this year.

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