One way of helping parents/carers understand what is happening is to make an analogy, likening illness to an elastic band that ‘squeezes’ the gap between a child or young person and their parents/carers for a short time. The child or young person becomes more dependent on parents/carers and other adults, and misses out on ‘normal’ experiences their friends will have. Change can also be frightening and stressful for children and young people; another reason why it can sometimes be easier to regress to an earlier stage of development and need more adult help and support.
It is very important that parents / carers keep the same ‘rules’ and limits around behaviour that they have always had for a number of reasons:
- Just because children and young people are ill, does not mean they should get away with a behaviour that is normally not acceptable.
- It can help children and young people to feel safer if some things stay the same and predictable (i.e. adults’ responses to their behaviour).
- It helps post-illness adjustment.
Toddlers and pre-school children
Toddlers and pre-school aged children frequently regress (e.g. toilet trained toddlers go back into nappies) when they become unwell. It is helpful for parents/carers to be reassured that this is ‘normal’ and that as children go through treatment, we would expect them to progress developmentally again, especially as their health improves.
Babies and children need their main carer to be near them and gain great comfort from that alone. As they get to know staff and begin to feel better, they will naturally gain more confidence in their environment. Parents/carers need to be encouraged to allow this progression of independence, no matter what stage of development their child is at. It is natural for a parent / carer to want to do everything for their ill child, however, early input from staff to advise the parents / carers to encourage the child to be as physically active as they can be is important, e.g. getting the child up, dressed and out of bed during the day; ensuring the child has to move to get something they want rather than it being passed. This will help to maintain some boundaries and independence and combat the muscle-wasting that might otherwise occur.
Primary school-aged children
Primary school-aged children who have previously been quite independent in toileting and dressing, for example, may regress and become very dependant on their parents/carers. It is important to be aware of this and whilst it is unavoidable to a certain extent, help parents/carers to bear in mind that this time in hospital will come to an end and keeping ‘normal’ boundaries during the illness period will help children adjust well to life post-illness.
Smaller children are exposed to a much larger number of adults than is usual, all of whom will interact with them slightly differently and some of whom may do painful things to them in the course of treatment. It is normal and healthy for them to be initially wary and defensive with staff, and to regress and require their parent/carer’s reassurance more than they did before they were ill.
Parents/carers often wish to do everything for their child at this time, especially if they are ill and in bed. Frequently children of all ages regress in their developmental stages but this should be temporary. As children go through treatment, we would expect them to progress developmentally again, especially as their health improves, and parents/carers need to be encouraged to allow this progression of independence in whatever stage they are at. Whenever they are well enough, children should be encouraged to get up, get dressed and stay out of bed for periods of time during the day. They should participate with their activities of daily living as much as possible. The more they can maintain a normal routine when in hospital, the quicker they will return to normality when discharged home
Children with acute lymphoblastic leukaemia (ALL) are especially prone to losing strength in their legs when they are an inpatient during the first month of treatment. This is due to a combination of the effects of the drugs, muscle loss, fatigue and lack of movement. Early input from staff to encourage exercises and weight-bearing whenever possible can help to combat this, even if only standing for a few seconds every time they need the toilet.
Young people
Young people can go from being quite independent to suddenly being dependant on their parents/carers a great deal, both physically and to be their ‘voice’, whilst they adjust to their new circumstances and environment. Again it is to be expected that there will be a level of regression and that the young person will now need their parent/carer more than they have done in a while. Acknowledging this is helpful, as some parents/carers can be quite scared by yet further changes in their child. At the same time, gentle encouragement to parents/carers to allow their child some independence and time alone is helpful. Whilst allowing the young person increased dependence on the parents/carers, it is important to discourage parents/carers from “wrapping them up in cotton wool” or being overly protective, as this can have detrimental effects on the young person’s future re-adjustment / independence.
Again, whenever they are well enough, young people should be encouraged to get up, get dressed and stay out of bed for as much of the day as possible. If they are in a Teenage Cancer Trust (TCT) unit there will be a social area they can sit in. They should be as independent as possible in their activities of daily living. The more they do whilst in hospital, the quicker they will return to normality when discharged home
We encourage young people to communicate directly with staff whilst in hospital and also to keep an ongoing interest in their peers and schoolwork (link schooling). Likewise, it is important for staff to communicate directly with young people, as a general principle and dependant on maturity < 16 years, but certainly legally > 16 years, i.e. they need to be the main recipient of information and discussions.
It is also very important to maintain some physical fitness, so wherever possible encourage them to physically move, e.g. walk to the toilet / social area, to leave their beds. Encourage them to look towards discharge and return to school. (link physio, normal life, CIPN). Some young people are understandably very concerned about their appearance, which has often changed (link Hairloss and Body Image). Contact with friends whilst in hospital should be encouraged, for example through social media or where possible visits. Once they are home and well enough, returning to school should be encouraged. Lunchtimes, short periods or intermittent days at school are important and helpful and can make a more permanent return less daunting. Significant anxiety and/or withdrawal may warrant referral for further help, e.g. to local clinical psychology or TCT service.
Further reading
CLIC Sargent: family relationships for children Information for ages 10-15 about the impact of a cancer diagnosis on parents, with tips on getting on well with them after diagnosis.
CLIC Sargent: your relationships Information for 16-24 year olds about how cancer can affect their relationships with family, friends and partners