On initial admission
Parents/carers, children and young people find themselves suddenly in an emotionally charged and alien environment where there is little privacy and scary things happening. Every child or young person will react to this in a different way. Frequently, children will object loudly and clearly to this invasion of their physical and emotional space, especially the younger ones. It is quite normal for all pre-verbal and young children to express their emotions through behaviour; however older children may also express themselves this way. (link to regression).
Initially, frequent interventions such as intravenous infusions and oral medications in a strange environment can lead to sleep deprivation. (link steroids / chemotherapy /sleeping). This may result in challenging behaviour manifesting itself as toddler tantrums, swearing, and non-compliance or demanding a parent/carer never leaves their side.
Reassure the parents/carers that their child’s behaviour is not out of the ordinary and encourage them to look upon it as healthy that most children and young people do not accept a complete change in their routine, painful procedures and a great many strangers approaching them with no protest. The parent/carer should know that their child is not the first and probably not the worst in their behaviour towards the staff. Ensure the parents/carers feel supported and know that protest is acceptable and it is good to validate how their child is feeling as long as safe boundaries are not crossed - that they cannot hurt themselves, anyone else or destroy the environment.
Advise parents/carers to help their child by labelling what they seem to be feeling - be it scared, angry, tired, etc. and to give direction about what behaviours are acceptable or not, e.g. “I know you are scared by all that is happening but that doesn’t mean you can hit mummy.”
It is important to re-iterate that it is not the patient, parents/carers, siblings or anyone else’s fault that the child or young person is ill. This kind of superstitious or ‘magical thinking’ is very common in children and adolescents at times, even though they are not vocalising it and have been told otherwise. This kind of reassurance needs to be repeated to children and young people regularly, as children’s understanding of their illness changes over time and with age.
Many young people get great benefit from peer support in managing stress and anxiety or difficulties relating to staff or adjusting to being on treatment.
Ongoing challenging behaviour
Most children and young people settle into the new routine of hospital visits and home / school life and assimilate the new necessities into everyday life (for example, taking their medicine). There are a few, however, for whom aspects of treatment remain challenging. It is helpful to try to tease out whether this is due to a specific issue (e.g. procedural distress) that can then be addressed, or a larger general inability to come to terms with what they are going through.
Play specialists, Specialist Nurse Key Workers (usually a POONS or CNS), Psychologists, CLIC Sargent Social Workers, and the wider team can work with a child or young person and family over specific issues. Each unit holds a psychosocial or supportive care meeting where action plans for patients and families who are struggling are put in place so that everyone can be consistent in their approach. Sometimes it is necessary to work with parents/carers on a one-to- one basis. The family’s Specialist Nurse Key Worker can advise in the first instance who the most appropriate professional may be, as there is some variability between units.
Not all families automatically meet a clinical psychologist so again, the Specialist Nurse Key Worker will be the best person to contact in the first instance to ask how a referral may be initiated.
It is especially important for children and young people and their family who are struggling to be given as much control as they can in the situation they find themselves. For example, they may need the injection, but they can choose where they sit, who they want with them, etc.
A psychiatrist may become involved in the child or young person’s care if necessary; usually this is if there are significant concerns around mood that may warrant psychiatric opinion and may perhaps benefit from appropriate medication.
Further reading
Dexamethasone factsheet Factsheet on the steroid dexamethasone, including information to help families manage the behaviour of children with acute lymphoblastic leukaemia on steroids
Managing family life and cancer A practical guide to managing family life and cancer from CCLG
CLIC Sargent CLIC Sargent produces a 'how you look and feel' information sheet
Hands On Scotland This website provides practical information, tools and activities to respond helpfully to troubling behaviour and to help children and young people to flourish.
Knowledge Scotland NES Webpage for NES psychosocial training in adherence, self-management, adjustment to chronic illness and pain