(This paper was presented at the ICCCPO Conference, Porto, Portugal September 2002 by Rebecca Jerram on behalf of the writer who was unable to attend).

I recently completed my doctorate at the University of Auckland, at the Faculty of Medical and Health Sciences. My thesis was to do with serious child illness, from the parent perspective. In collaboration with other parents who had been managing their children's health situation for some time, I developed a stress and illness management programme called the Strong Parents- /Strong Children programme. 

My motivation was an unanticipated illness diagnosed some 20 years ago in our eldest son, Christopher. This life-threatening condition, revealed by CT Scan and eliminated by radiation treatment, was a pineal germinoma. This is a very rare and primitive cancer that arises from the germ cells at conception. These cells are almost always discarded. Very occasionally they remain and turn malignant in adolescence. In Christopher's case they had settled on his pineal gland and by the time he was 15 years or so, they had become a layer, like a carpet, creeping very slowly over parts of his brain, in particular his pituitary gland, auditory and optic nerves. By the time we knew that there really was something 'not quite right', the cancer had caused quite a bit of damage.
My research was an attempt to make some sort of sense out of the extraordinary events that have made an impact on our lives as a family and particularly for Chris. At the time we knew the nature of the beast and that something could be done about it. The aftermath of his condition and the resulting health, sensory and physical difficulties were things that still lay ahead. 

From a parent's perspective, the experience was like no other that one would want to encounter in one's lifetime. Threat to our young, or threat to the young of any species, highlights basic instincts for their survival, with little thought for ourselves! I was keen to find out from parents what was involved in managing their child's illness or health condition, on a daily basis, to see whether there was anything that might be helpful to other parents further down the track. I embarked on my research some ten years after the event. Chris had recovered, but our family had experienced something that not everyone has the misfortune to encounter. Doctoral study was my way of trying to make sense out of what had happened! 

I also hoped that it might prove helpful to other parents and put something back into the system. 
In consultation with paediatricians and charge nurses at Starship Hospital and the Neurosurgical ward at Auckland Hospital, 40 parents managing childhood cancers, cystic fibrosis, diabetes mellitus (IDDM), renal disease and haemophilia for some time were interviewed. The Paediatric Coronary Care Unit at Green Lane Hospital in Auckland and Parent Support Groups were also informed of the research. Parents had all indicated interest in hearing more about the research from the hospital. 

I interviewed parents either at home, at the hospital or at the Cancer Society's motel where several were staying. I was interested in finding out just what parents were having to manage on a daily basis. I was also keen to know whether they thought some sort of intervention programme might be a helpful community resource, what sorts of things they felt might need to be in it and whether they might like to be involved further in research. Parents were appreciative of the fact that I was a parent myself and had some understanding of the sorts of things that they were going through. I introduced myself as the mother of a young man who had had a brain cancer some years before. Many of them enquired about how he was and what he was now doing. They then proceeded to tell me how their child's illness had unfolded, how it had altered family life and what the situation was at the time. 
I include here most of the first parent narrative noted verbatim when I met with this mother and her husband, in the neurosurgical ward of Auckland Hospital. 

First Parent Narrative

Kept him home from school, eyes crossed, nothing else, very healthy. After three days, went to doctor, he sent us straight to hospital to see specialist, that was on Friday, suddenly we had a life-threatening situation, he told us it might be a brain tumour. We had to go to Auckland for a biopsy to confirm it. We came up here the next day, Sunday. 
Everything seems to have an overlay of unreality, still nothing seems real at all. I came up in the ambulance, followed by Dad in the car, with only the clothes I was standing up in, found when I arrived I had left one shoe behind! We had to ring our older son to tell him what was happening. He is very worried about it all. 
Son was still perky and well when we came up, he had a list of questions for the doctors. Then he seemed to get sick and was restless before the operation, didn't make any response even when having his hair shaved! Since surgery he has barely recovered. 
I can't reveal my feelings, I have to keep a brave face for my son. He hasn't woken up much more than this since the operation, we came back to the ward this morning, since then we've had very little regular attention. I have a dreadful feeling that they are thinking of him as dead, I have a `poor mother' feeling. 
At first no one was telling me anything, when I realized that they were talking about my son, I moved closer to hear. I knew nothing about oncology , we were given very little information, this is my first experience, I'd never heard about this .
The biopsy has confirmed the diagnosis, and I've put myself 'on hold', really, I've stopped eating, washing, hardly slept at all, I can't bear to leave his bedside. I feel I'm fighting for my child all the time. I now realize I need to ask all the questions I have to and see that I get answers, he needs me to speak for him, to be his eyes and ears, and since I have been here on my own I'm realizing a sense of advocacy. 
We have no family in New Zealand, its difficult to explain on toll calls, they are all very concerned, there's no-one here to help, my husband has been keeping in touch with the family and that leaves me free to look after our son, concentrate on looking after him. My husband says we need to be strong together. We have appreciated being able to be with him in the Whanau at `Starship' while waiting for the operation. 
My husband's employer gave him three days off work he stayed for the operation then went home, he's back here to take us home tomorrow.
We're now in the second week since the operation, we return to our local hospital tomorrow. 
The outlook is uncertain.

The basic natural instinct of having to do all in our power, even when in a strange environment and having lost control over what is happening to our child, is, I believe, shown here very clearly. It is very clear just where her suddenly-altered priorities lie and a good picture is provided of the rude and sudden interruption to normal life that is made by such a diagnosis. 

After parents had given me their information, I asked them if they could put a ranking from 1 to 3 beside the pieces of information that I could see clearly belonged together - in 'chunks' if you like. This they did, and their typed information was then checked with them a few days later, for accuracy. 

It was quite apparent from all the parents interviewed, that, no matter what length of time had elapsed, the moment of diagnosis, what had led up to it , the diagnosis itself and its impact, and how it had been dealt with were still uppermost in their minds. Parents were able to recall their experience vividly and the times since diagnosis varied between six months and 15 years. 

The stresses that most parents had rated most highly for stress intensity went right across the illness types. The most intense stresses were not just confined to childhood cancer. The areas or periods in which the most intense stresses were felt were at the time leading up to diagnosis, the time of diagnosis, seeking information, dealing with the treatment, and the daily management of the whole situation. The potential for threat to their child's life and the constant care and on-going vigilance heightened the impact of the changed child health status. Worry over the future quality of their child's life, seeing their child so sick and dealing with perceived effects on siblings were further areas of intense stress.  

Most parents welcomed the idea of some sort of intervention package or programme, many were keen to be involved later on, depending on their child's health at the time and there were several aspects that they felt should be covered. 

Requests for programme content included dealing with the worry and anxiety, coping with everyday practicalities of managing family and the illness, and finding ways in which they could get the information that they felt they needed. Parents also wanted help with knowing how they could access some sort of educational help and support if needed when their child returned to school, and how to help their child, the siblings and themselves deal with whatever might lie ahead. 

The parent voice came through in this first study very clearly. Parents spoke freely and many of them told me that it was the first time that they had ever really talked about the whole experience. Many of them had had similar experiences although quite different diagnoses. One other clear factor that came through with each of these narratives was the fact that all of these particular illnesses or health conditions are hard to diagnose. With many of the children whose parents were involved in this first study, regardless of their illness, parents had had to make several trips to their doctor before the more serious nature of their child's illness had been determined. Once it was apparent that something more than the more normal childhood illness was a possibility, referral to hospital specialists had in most cases seen immediate action being taken. The family doctor sees many sick children pass through his or her surgery on a daily basis. If likened to horses galloping past the surgery window, periodically there is one horse that appears again and probably again. At that stage it becomes apparent that this one may be in fact a zebra, not a horse and more information is needed, perhaps another opinion. Occurrences of serious illnesses such as childhood cancer are fortunately not common occurrences, but the impact they have on the child, their siblings and parents can have lifelong implications. Some form of disability may result and plans by a young person may need to be re-visited, with family support and understanding. 

When our children are admitted to hospital, it plunges us quite often into an alien world. Part of coping with all that serious child illness implies is understanding that there are very few things that will ever be more difficult! It is challenging, by anyone's book.  

The role of parents is critical. As parents, we hold the ' real world' information on our children and this information can be most helpful for clinicians, nurses and others working with our children to know.
Parent voice in serious child illness, including childhood cancers, is a voice that needs to be heard, right there, alongside all the health professionals helping their children. However, parent voice is not heard very often in the professional literature. 

Empowered parents, able to advocate and contribute in a fully-informed manner is one of the best ways to see that our role is recognised and valued in the best interests of our children. 
The overriding impression that I was left with was that there are many, many parents managing situations not unlike our own and all of them are doing the very best that they could do, along with the health professionals- and that is all that anyone can do! 

The Strong Parents-/Strong Children Programme has continued successfully at Starship Children's Hospital over the last two years. The aim is to train other parents to run it elsewhere. With this in mind, a charitable trust - the Strong Parents-/Strong Children Foundation has been registered to access funding for the programme in Auckland and eventually throughout New Zealand.

For further information, contact
Helen Jerram, Ph.D.
Registered Psychologist 
The Strong Parents- Strong Children Foundation
e-mail address: tienny.jerram@xtra.co.nz