For the purpose of confidentiality the name of the case study, has been changed (UKCC 1996)
The aim of this essay was to select a client, the client in this case being a ten-year-old boy with cystic fibrosis, in a hospital setting. To assess the holistic needs of that client, using Beck, Williams and Rawlings "The five dimensions of self", (Beck 1993)
Josh has lived with cystic fibrosis for 7 years –People with CF suffer from chronic lung problems and digestive disorders. The lungs of people with Cystic Fibrosis become covered with sticky mucus, which is hard to remove and promotes infection by bacteria. Many people with CF require frequent hospitalisations and continuous use of antibiotics, enzyme supplements, and other medications.
Born and living in hull 59 miles away, Josh has to be admitted to this ward every two months for treatment, when admitted he generally remains in hospital for three weeks. Josh has no father, but has a mother who is very protective and takes a keen interest in his care. His mother who works as a sales assistant in a small shop in hull, travels with Josh every two months and stays with him for the duration.
Education has been provided in hospital for many years, the 1944 education act stated that "all children should be educated according to age, ability and aptitude" (Hull 1989).
One of the problems with having to attend the ward every few months is the lack of schooling Josh received, and increased chance that he will get behind in his schoolwork. This is why it is extremely important that education and homework should continue in hospital.
The teacher on the ward that I worked came to see the children at 9am until 12pm Monday to Friday, spending around 15mins with each child. Having spoken to the teacher she said that she has to find each child’s level, and work from that. This has its benefits, giving the child the one to one tuition, however in Josh’s situation, he wasn’t very well, and didn’t feel particularly motivated. The last thing he felt like doing was schoolwork. The teacher did nothing to motivate Josh, she would explain what he had to do, and then leave him until the following day. As soon as the teacher had gone, he would put the work down and do something else. It was left to the nurses on duty to motivate him to do his work, which during busy periods was quite difficult, so regardless of the teacher being employed by the hospital, I don’t believe in Josh’s case it was very useful. Making it a little more interesting would have helped, and spending more than fifteen minutes to actually sit and go through the work, would not only ensure that he did the work but gave some contact with another person
The emotional state of the child is also a crucial element in development and health. According The Department of Health, "We now have a far greater knowledge of how children develop both emotionally and physically. With that understanding has come an awareness of the emotion vulnerability of the child and the effect which early experience can have on later development," (DOH 1991)
Josh’s mother was very anxious about Josh and about her job, she was finding it incredibly difficult to hold onto jobs that allow her the time she needs to spend with Josh every few months. To help with the accommodation aspect of her living temporarily in Leeds, there is a building for families called Ecclesley house, which is situated in the grounds of St James hospital.
It enabled parents to be close to there children and to have all the comforts of home. This is not only hugely beneficial for the parent but also for the child. It was especially advantageous for Josh and his mum, who came all the way from Hull.
It was important to allow mum to be able to ask any questions she wanted and to have those questions answered in a clear legible way. It was important to allow mum to have as much hands on care for Josh as possible, giving her some of the responsibility of care for Josh.
This is known as family centred care, "Family centred care can be described as a multi-faceted concept incorporating interaction between child, family and nurse, to provide holistic care," (Brunner and Studdarth 1991).
"Providing an opportunity for the family to care for their hospitalised child under nursing supervision," (Brunner and Studdarth 1991).
Family centred care is a key factor in maintaining emotional support for the child.
Josh had many physical needs whilst in hospital, some that he needed to stay alive and some to keep a sense of normality.
One of the symptoms of Cystic Fibrosis is the prevention of ridding mucus from the lungs; if this is not helped or assisted then it can lead to breathing difficulties and infections, even death. The physiotherapists, who were based on the ward essential part of Josh’s treatment, without them he would have most certainly died. Josh required four sessions of physiotherapy a day. This was a routine Josh had to get used to as part of his ongoing treatment. The physiotherapy was very hard going and at times seemed quite ruthless, there were a number of occasions when he fought against the treatment.
"Often the child will manifest anger, fear and other emotions by resistance to chest physiotherapy. Allowing the child to engage in physical activities within his physical tolerance could redirect these feelings as well as to improve respiratory function." (Harvey 1990).
Unfortunately there were no activities Josh could have taken part in that were of a physical nature within the ward. Perhaps this would have helped. Josh did take a liking to a fire engine that was on the ward, which he used to race around the ward with and crash into everything, quite violently. The only feedback at the time was "Stop It!!", he is very young for his age, certainly too young to be playing with fire engines." I believe the nursing staff failed to see the link between this and the physiotherapy sessions. I believed Josh was very scared and frightened by what was happening to him. His mum, was getting increasingly anxious, with regard to Josh and her job in Hull. Josh would have easily picked up an atmosphere, perhaps even felt guilty about his mum, and was finding no reassurance from her.
The team that should have intervened with this situation was the nursing staff, who are a very important part of Josh’s physical well being. It was essential for the nursing team, to explain treatment, give him information, but notoverwhelm him with facts. Sitting and listening to Josh, was equally as important as talking to him. Listening to his fears and feelings. Spending time one to one, was what Josh wanted a lot of the time, which was difficult when the ward was busy, but this is one of the times when family centred care was found to be useful. his mum spent a lot of time with Josh, during the times she went for food or home for some rest we would step in and spend that time with him. This worked well, however the problem was that there wasn’t the time to spend with Josh’s mum, to explain and resolve her anxieties. This was a problem because as much as the nursing staff were reassuring Josh, his mum was inadvertently creating anxiety, stress and possibly guilt. The one to one care the nursing staff were giving was wasted. If the nursing team had allocated more time to spend with both Josh and his mum together, then a lot of the anxieties and stresses of both mother and child could have been alleviated.
The social care of Josh was extremely difficult; there were four other patients on the ward with Cystic fibrosis, all around Josh’s age. Unfortunately because of the nature of CF, each had to be isolated from other CF patients, because of the risk of cross infection. This was very distressing for Josh, as he loved to play with friends, make friends, and talk with friends. This made Josh very angry and frustrated with the Nurses, and his mum. The hospital ward tried to create a state of relative normality for Josh whilst on the ward, but according to the National Child development study "isolation from friends and peers has an important impact on future relationships, and socialization," (Hull 1990). This was a problem that wasn’t raised as an issue within the ward. I suggested that they write to each other, and that we would help with any reading and writing he needed, this seemed to work, and was great fun.
There was a strong onuses on play on the ward. "Through play the child learns about his/her environment, through the process of assimilation or through the practice of skills," (Harvey 1990).
"Children develop, intellectually, emotionally, physically and socially through a series of sequential stages" (Johnston 1988). The play requirements vary according to their age and/or developmental level.
Play helps form their own identity, to exercise control, to adapt their particular culture and to develop inter personal relationships.
"Deprived from play a child is a prisoner shut of from all that makes life meaningful, play is not merely a means of learning the skill of daily living, but gives the impulse to create and achieve". (Harvey 1990).
Children in isolation, such as Josh, have particular difficulties. They are not only away from home, but also in an unnatural, lonely and alarming situation with no opportunity to play with the other children. Play programmes are essential to compensate for the loss of independence and companionship. Play is also one of the ways in which a child may develop the capacity to deal with the stresses and strains of life as they press upon him. It acts also as a safety valve, allowing him to re-live and often come to terms with fears and anxieties that become overwhelming.
This failed Josh whilst he was on the ward. The onuses on the ward were either the very young children or the adolescents. So I believe this didn’t benefit Josh at all. The activity specialists were only part time, and they didn’t work weekends. Maybe employing them as full time and over the weekend with better funding would help provide a suitable care programme for children Josh’s age.
One of the noticeable problems with Josh was that he always behaved when with the nurses, however as soon as his mum arrived he would throw tantrums.
One of the factors the nursing staff and all other agencies working on the ward should have ensured was Josh’s self-esteem. Being isolated, Josh could have easily felt rejected by his mum and by the ward. Children who experience repeated rejection and other negative emotions "will eventually develop low self esteem and a poor self image" (Hull 1990). Children with low self-esteem often behave badly in front of the person they need reassurance from; in order to have it confirmed that they really are bad. Perhaps this was the reason why he only behaved badly with his mum, because he felt guilty and blamed himself for his mum’s anxieties.
There were many agendas raised in the care of Josh, the main aspect I believe to have been ignored was the communication between the nursing staff and his mum. She showed a keen interest in his care yet was not properly explained the facts by the nurses. If more care had been given in explaining and listening to his mums worries and concerns, then a lot of Josh’s emotional problems could have been helped and eased. There was enough interaction between the nurses and Josh, but very limited interaction between nurse and mother. There were also enough signs within his behaviour to indicate him not being happy, and worried, which were never noticed. Fighting against the physiotherapy, going over the top crashing the fire engine.
I believe family centred care to be extremely important in the care of paediatrics; however there is a fear that the nursing profession can take for granted the role of the family in the hospital. It is true that the parents are the best managers of their child’s care, but it must be remembered that, the parents are not professional nurses, and need the information from the professionals, who have had the training, knowledge and the experience in dealing with diseases such as Cystic fibrosis.
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