Autumn 2011 Issue - University of Central Lancashire

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10 Feature Articles machine). Advances in technology now means a ventilator can be strapped to back of a baby stroller and the child and family is much more mobile. Children who, in the past, would have been nursed in hospital for years can now be cared for at home. That’s a fantastic advance, as it means children are not growing up in hospital. The place of care has been shifted into the family home which has many advantages for the children but research needs to be undertaken to ensure that we are not just sweeping chronically sick and highly dependent children just out of sight into homes. We need to know the impact of caring for children at home on their families. Much of the research I do focuses on the notion of care being ‘Better at Home’. Sometimes people think that working with children who are receiving palliative care, or have life-limiting illnesses or profound disability would be sad and gloomy and sometimes it is. However, it is actually some of the most interesting and stimulating work that you could do because the children and their families are brilliant. For example, the image of a child on life support machine conjures up an image of a very sick child who requires the researcher to be very gentle. In reality interviews can be different with the child on the ventilator adding to the challenge of undertaking the interview by throwing paper aeroplanes around the room. Children, regardless of whether or not they are ill, can be mischievous. Undertaking workshops with children is really fulfilling and I need my wits about me. Whoever said children were vulnerable hasn’t met some of the children I have interviewed! I see you have an NHS report – is this something you have been involved with producing? Yes, in 2009 a colleague of mine at the University of West of England and I, were commissioned by the Department of Health to examine Community Children’s Nursing Service provision in England. We ran a series of arts-based research workshops with children, families and professionals in Spring and Autumn 2009. The “NHS at Home” Community Children’s Nursing Services report, based on our research, was finally published in March 2011 and launched at the Royal College of Nursing on 26th April 2011. This report is really significant for families as the government has recognised that if children are to be nursed at home then community children’s nurses are the absolute front line troops to provide and co-ordinate that care. So it feels like quite a victory to have the need for skilled support and care by children’s nurses recognised as well as the contribution of unqualified carers. Community Children’s Nurses do a mix of hands on care in the home as well as providing education to the child and family about how to manage the child’s care. They also train and manage the unqualified carers who go into the home to provide some aspects of ongoing care. So you would have carers who knew about the things like the ventilators or other equipment that the children rely upon? Yes, at the moment unqualified carers are trained specifically to meet the needs of individual children which means that their skill set matches that child. If the child deteriorated or they developed another symptom or disease then they would need additional specific training. Do the parents have a certain element of training to support the children? Yes, all parents are trained to meet their child’s care needs including complicated drug regimes or managing their child’s ventilation. For children requiring long term ventilation this will include how to manage the machine, how to ‘bag the child’ so as to maintain mechanical respiratory support if the ventilator stops. Is it the case that almost every child is different in terms of needs and support? Yes, partly because any child’s reaction to either trauma or illness or injury, or birth defect is slightly different but also their families are different and so what might be possible in one family becomes more challenging within a different family. As children grow up their response to their condition or illness can vary. Some families find it fairly easy to manage their child’s severe epilepsy when their child is small, because they can hold them gently whilst they are having a ‘fit’. For a bigger child it becomes more difficult to make them safe. Every child and every family is different and they need tailored support from children’s nurses. The transition from childhood into adulthood - is that often a difficult transition? It is often huge as adult services are so different to children’s services. Illnesses that are relatively common are relatively easy to manage (e.g. children’s diabetes or children’s asthma) but even then transition can be challenging. Children will have grown up with the same professionals in a setting they know well and understand. Psychologically and in many other ways transition can be huge. It’s one of the areas that I and other colleagues have been working on for a long time and it’s still not perfect. The most effective transitions are ones where there is careful preparation and when the child and their family have the opportunity to take time to become > Children who, in the past, would have been nursed in hospital for years can now be cared for at home. That’s a fantastic advance, as it means children are not growing up in hospital.
Feature Articles 11 accustomed to the new setting and systems. It works best where you have joint transition clinics with adult physicians and nurses working with children’s nurses, paediatricians and so on. One of the themes of this issue of Breakthrough is on ‘community’ and I wondered whether these children themselves had a community? My hope for the children is that they will be able to be integrated into their home community, by which I mean their home, their school and to join in as many activities as possible with their friends. Sometimes integrating the family back into their community when they have spent a lot of time in hospital can be pretty difficult. If the parents are spending a lot of time at home caring for their child, the parents can miss out on the normal things that parents do – even simple things like going and doing shopping can be really tricky. There are some voluntary organisations that work with families. I am working with the Rainbow Trust at the moment, and the Family Support Workers they provide spend time playing with the children and providing transport and other support so the family can engage in “normal” activities. Can you tell me about your work in Australia and your recent visit? I have links with a Nursing Practice Development Unit at the University of Tasmania, where they have invited me to be a Visiting Clinical Professor. Out in New Zealand, I work with the Children’s Research Centre, Auckland. The plan is to create links between these centres as we have similar research interests, and to do some global collaborative, comparative research focusing on children with complex needs and the way care is provided at home. I would like to do some work with colleagues in Scandinavia and maybe America as well. You also work with Alder Hey Hospital? Yes, and saying that I work at Alder Hey makes me smile. Alder Hey is now half of my life. I am seconded over there for 2.5 days per week to develop the research capacity and capability of research children’s nurses. I am Director of the Children’s Nursing Research Unit based at Alder Hey; it is the only one of its kind in UK. We are focusing on developing skills on both predoctoral and post-doctoral nurses with the intention of developing nursing inspired research that improves the lives of children and families. It must be very rewarding on the one hand but sometimes it must be quite distressing to see some of the cases and the situations? My clinical background was children’s intensive care so I’ve seen a lot of difficult things but I’ve never got used to it. However tough it is for me it’s tougher for the children and their families. If I ever got to the point where things didn’t hurt me I would know that it was time to stop. In terms of being a researcher the thing I find most difficult (and rewarding) is listening to the parents’ and children’s stories because, as a researcher, you stand slightly back. You can empathise and offer support within the interview in a fairly constrained way but it’s a different type of engagement to when I was in practice. Certainly for my students, I spend quite a lot of time making sure that they are alright with dealing with the stories that they hear during their research. We all have different ways to deal with the stories people share with us. Rock climbing and cycling are good antidotes for me.
Page 1 and 2: Excellence in Research and Knowledg
Page 3 and 4: 3 Contents Breaking News 4 Feature
Page 5 and 6: 5 National enterprise tour hosted b
Page 7 and 8: Feature Articles 7 conversations be
Page 9: Feature Articles 9 Nursing Children
Page 13 and 14: Feature Articles 13 the drug become
Page 15 and 16: Feature Articles 15 them. The idea
Page 17 and 18: Feature Articles 17 Employability i
Page 19 and 20: Feature Articles 19 ...and the winn
Page 21 and 22: Funding, Awards and Recognition 21
Page 23 and 24: Funding, Awards and Recognition 23
Page 25 and 26: Conference Reviews 25 History of fo
Page 27 and 28: Conference Reviews 27 company busin
Page 29 and 30: Conference Reviews 29 Graduate Rese
Page 31 and 32: Book Launches 31 Creating Memorials
Page 33 and 34: Book Launches 33 Deconstructing Dig
Page 35 and 36: 35 Editorial team Professor Mike Ho

Autumn 2011 Issue - University of Central Lancashire

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