The Sibling Days Programme

Janet Mikkelsen, BSc (Hons), R (Comp)N established the sibling day programme at Starship Children's Hospital. She discusses their importance, drawing on her own and other research into the impact of childhood cancer on brothers and sisters of seriously ill children. Janet works part time in the paediatric oncology and haematology clinic at Starship Children's Health. She has worked at the Royal Children's Hospital (Melbourne), Great Ormond Street Hospital (London), Bedford Hospital in the UK as well as Starship and its forerunner Princess Mary.

When a child develops a life-threatening illness it is a devastating experience for the whole family. Initially it requires an immediate change in daily routines and roles within the family suddenly change. Of necessity, parents focus their energy on their sick child, but this can be to the detriment of their other children.

As childhood cancer has become more, curable' and attention is starting to focus more on the long term effects than on developing more effective treatment, those involved in this field are also widening their focus from the children with cancer to his or her family. Over recent years research into the psychological issues around childhood cancer has been focused on the effect on well siblings and there has been increasing awareness of the vulnerability of this group. The importance of this is supported by a study (Walker 1990) which found 'there is less adjustment and greater need on the part of the siblings than any other family members.'

Early studies on the effect of cancer on well siblings found a majority of them exhibiting abnormal behaviours such as headaches, bedwetting, school problems, abdominal pain, fire setting, feelings of rejection, fear and guilt and significant anxiety about their own bodies and health (Carr-Gregg and White 1987; Walker 1990; Bendor 1990). In America, Martinson et al (1990) looked at the disturbance in family relationships due to the absence of parents, substitution of parent surrogates and the increase of energy spent on the needs of one member of the family. Most studies identified that the well siblings felt isolated from their family and friends and remained anxious and confused for long periods of time.

In Bendor's 1990 study, children were asked whether they ever wondered about getting leukaemia themselves. The answer was a resounding "yes" with two children adding: "I often think it might not be so bad. Then at least you would get all the presents and would not be blamed for everything." Young children can often feel guilty and feel responsible for their sibling's current illness. This guilt results from the egocentric and magical thinking of the young child.

Stress Affecting School Performance

Rollins (1990), in her analysis of children's drawings concluded: "on interview and in the drawings, mothers in these families appeared exhausted and unavailable to their children." When studying older children, their school performance can be a good indicator of stressors at home. Walker (1990) felt that a drop in school performance in children could be interpreted as maladjustment to stress, whereas Heiney et al (1990) preferred to interpret it as an inability to concentrate on school work due to worrying about what is happening at home or the hospital. As childhood cancer involves month or years of treatment and follow-up, the change in family dynamics can become semi- permanent. Some studies suggest that this seriously compromises the long-term needs of well siblings such as educational planning and goal setting, as well as their daily emotional and physical needs receiving low priority (McKeever 1983). This constant, ongoing devaluing of their importance can leave these children at high risk of developing psychological problems in the future.

The children we have had through our sibling day programme reinforce the findings of this research. The well siblings are often jealous of the attention received by the child with cancer and one certainly hears about children who, when asked what they want for Christmas, will say "leukaemia". This response is particularly true if they have been excluded during the initial hospitalisation stage and have been 'protected' from hearing how serious their brother or sister's illness is. Often, after a few weeks, their sibling is home again and may go off to school and appear quite well. Yet for years to come, the 'sick' child may get extra presents and attention from every relative or friend, even if the parents have tried to keep the relationships within the family as normal as possible.

The effects of exclusion

When children are excluded from information or educational sessions they have to rely on their own knowledge or past experience to decide why this has happened to their brother or sister. This consistently leads to confusion and subsequent misconception about cancer and its treatment.

At our sibling days the well siblings often express resentment about having to be good all the time, and being constantly told to be quiet and understanding. They become resentful of the child with cancer always getting to choose what they have for dinner and family life having to revolve around doctor's appointments. Older siblings frequently have to take on added responsibility for the family in the form of child minding, preparing meals and generally keeping the household functioning. These adolescents express resentment of the extra burden and then feel guilty, assuming that they are being selfish.

Most well siblings experience considerable anxiety which may not be recognised as such. They may have difficulty verbally communicating their feelings and in distinguishing and labelling their emotions. Younger children tend to use immature coping skills such as attention seeking behaviour which, for a tired parent with limited energy, is more likely to be perceived as general naughtiness than a plea for normality and reassurance. All the siblings in our groups have focused on the worrying they do about their brother or sister with cancer and about their parents. They find it particularly frightening to see their parents upset and scared. Parents are meant to be able to cope and make everything better. It is important that we recognise that even though parents are going through a particularly traumatic time, they at least have had some experience in dealing with crises in their lives. Most children have had limited experience with any kind of major trauma and therefore have not developed useful coping mechanisms. Without guidance they are at risk of developing inappropriate and ineffective ways of dealing with stress which they could easily carry into adulthood.

What do siblings want?

In Auckland in 1991 we asked siblings currently involved with the unit what they wished they had known about and how we could help. Replies included: A visit to the theatre, outings for just brothers and sisters, without the parents and patient; a talk on how the brother/sister may play on their sickness, and how to avoid getting angry. We also provided siblings with a list of the things we might do and asked for their opinions. The most interesting ideas were a visit to the lab, a talk on cancer/leukaemia and a talk on how family members were affected.

From this we established our current programme. It has changed at times over the years but still includes the basic format: a talk on what cancer is, treatments and side effects, visits to places their sibling may spend some time such as theatre, outpatient clinic, CT scanning and radiotherapy. Siblings also visit the lab to see what blood cells look like and see bugs growing, have a discussion about families and feelings, and take part in medical play.

The lack of information to siblings was highlighted in all research so we felt it was important to focus on education during the day. It has been interesting to learn what some children have picked up about their sibling's cancer and what it means. For example, one child stated that her sister had got leukaemia from being scratched by a cat. Now this did have a basis in fact because the sister had been scratched by a cat. But it was the fact that the scratch did not heal that she eventually saw the doctor and was diagnosed with leukaemia. These are the type of misconceptions we can clarify.

Some parents have said that this session has been useful in that they can then explain more clearly to their friends what is going on. One child immediately did a morning talk to his class about cancer. Another mother reported that before the sibling day her children had found the pressure of curious school friends very difficult. Children attending sibling day gained basic concepts and language to help them explain the family situation to their friends (Mackay 1999). We also talk at sibling days about the treatment and side effects. Siblings all relate to having a brother or sister who is really grumpy, knowing that it is because of the drugs they are taking to help them deal with it.

As part of the sibling programme we also do various visits to places where sick siblings are likely to spend time. The outpatients' clinic for example is a place that may often be discussed at home so is a good place for siblings to visit. To know what it looks like and what happens there helps siblings feel included. We also visit theatre, the CT scanning unit, radiotherapy (for those children who will have a sibling going there), the treatment room and the laboratory.

Families and feelings

Within the sibling day programme there is a specific session on families and feelings although these are also covered in other sessions also. The aim of 'families and feelings' is to discuss the things children worry about. It is accepted that many of them may not want to talk about it themselves - and we give them some ideas on how to deal with it. For example, finding people to talk to, and doing things that help them forget about what is going on at the hospital. Some children are very open about how they feet and can articulate what helps them - whether it is playing with friends, talking to a grandparent or focusing on school work. The important thing is that they realise that how they feel is normal and that there are other children with the same problems.

We always have a session of medical play. It has been interesting how much this is enjoyed, even by the older children. Often at the hospital siblings are expected not to touch things such as the machines and at home to keep well away from central lines, medicines and nasogastric tubes. This session gives them a chance to do lumbar punctures and bone marrows (finding out more about what they are at the same time), putting central lines into dolls, connecting dolls to drips and giving them lots of injections. A six year-old who attended this session wrote: "I thought this part was the best of all but I wouldn't have liked to be a doll. I am glad that it is N who has to have all the injections and not me."

We have had plenty of positive feedback on sibling days from both children and parents, many of whom have asked if the children can come again. This needs to be considered for the future: the educational needs of children change with age so they would require different activities if they came again a year or so later. There are many other ways siblings can be helped and the sibling days are just one forum which is useful. The programme can only be done at the tertiary hospital because of the resources and staff required. Local areas can support siblings by making an effort to include them and make them feel special, supporting those who are looking after siblings when the sick child has to travel to the tertiary hospital for treatment, arranging outings - anything that acknowledges how hard it can be to be in a family where one child is seriously ill.

Schools are a good source of support. It is important that schools are kept informed about what is happening and they may also be a good source of information about how the siblings are coping. They will notice drops in educational performance or behavioural problems and can be encouraged to pass on these observations to parents. A teenager explains how normalising school can be also: "For me school was normal and it was getting away from the hospital and that was good. I remember the day of R's surgery. I went to school - I wanted to go to school that day otherwise I would have just sat at home being bored and worried". (Skeen 1999).

I have often suggested to parents a buddy/mentor system for siblings. They could ask someone they know well, such as a grandparent, an aunt/uncle or a close adult friend to consciously take on being the support person for the sibling. They need to always ask how the sibling is first, be interested in what they are doing, how they are doing, go to watch soccer/netball games if the parents are unable and generally be in charge of making the sibling feel special. Every sibling needs one and this will work really well when parents do not have the emotional or physical energy to meet everyone's needs.

In conclusion, well siblings of children with childhood cancer are a vulnerable group. They are placed in a situation where their needs must take a lesser priority for a long time and this can lead them to conclude they are not as important to the family. They have a need for information about their sick sibling and that is where our sibling days are important. Siblings learn a lot, are made to feel special and important, meet other children in a similar situation and have an opportunity to discuss ways to cope with their feelings. It is a recognition that childhood cancer has major effects on the whole family and that part of our aim in treatment is to have a family that functions well at the end of treatment - not just a child cured of cancer. Our commitment to family-centred care and a multidisciplinary approach is reflected in the sibling days which have also been recognised internationally as an innovative and practical way to tackle a recognised problem.

References

Bendor, S (1990) Anxiety and isolation in siblings of pediatric cancer patients: the need for prevention. Social Work in Health Care, 14(3), 17-35.
Carr-Gregg, M and White, L (1987) Siblings of paediatric cancer patients: a population at risk. Medical and Paediatric Oncology 15, 62-8.
Heiney, S, Goon-Johnson, K and Ettinger, R (1990) The effects of group therapy on siblings of pediatric oncology patients. Journal of Pediatric Oncology Nursing, 7(3), 95-100.
Martinson, I Colaizzo, D Freeman, M and Bossert, E (1990) Impact of childhood cancer on healthy school-age siblings. Cancer Nursing, 13(3), 183-90.
Mackay, B (1999) When your brother or sister has cancer: supporting sibling's right to know. Paper presented to the Children Issues Centre Conference "Children's Rights: National and International Perspectives."
McKeever, P (1983) Siblings of chronically ill children: a literature review with implications for research and practice. American journal of Orthopsychiatry, 53(2), 209-17.
Mikkelsen, J (1993) Sibling Care, in Glasper, EA and Tucker A (eds) Advances in Child Health Nursing, Scutari Press, Middlesex.
Rollins, J (1990) Childhood cancer: sibling draw and tell Pediatric nursing, 16(l), 21-6.
Skeen D (1999) Siblings care share discover and grow. The effects of childhood cancer on the sibling. A dissertation submitted to the Auckland College of Education.
Walker L (1990) Siblings of children with cancer. Oncology Nursing Forum, 17(3), 355-60.

Sharing Autumn 2004