Managing Your Child’s Behaviour around Medical Procedures Of Cystic Fibrosis

In this chapter, we will look at some of the behavioural difficulties that are common in children and ways of managing these. The techniques that are used to manage the behaviour of healthy children can work for children with physical health conditions, with some adaptations. However, it may be harder for you as a parent to put these into practice for several reasons. For example, your child might be unwell, and you need them to co-operate with treatment so the usual parenting tactics such as removing something they like – such as watching TV or playing on a tablet – might seem too harsh and unreasonable. You might feel that with everything they have been through and continue to go through to stay well, you just want them to have a positive time and can’t bring yourself to limit your child. So, we will look at some of the reasons for this and make some suggestions as to how you can overcome the issue.

Being ‘Normal’ Children

All children will show some behaviour that challenges their parents or carers at times. It is natural for children to want their own way, to want nice things to happen and to continue to happen, and all children want to avoid doing things that they consider to be unpleasant or inconvenient. Babies are hard-wired from birth to get their carers to respond to their needs. They are known to change their cries and noises to indicate different needs and very quickly babies will cry not just because they are hungry, not just because they need their nappy changing, but simply because they want attention.

So, in essence, from the word ‘go’ babies shape their parents’ behaviour and this is how a parent and infant learn to communicate with each other.

Your job as a parent includes providing nurture, nourishment and safety, and promoting your child’s development and learning. This requires getting your baby or child to do certain things and not others. For example, during weaning, your baby has to learn to accept a whole range of food types, not just sweet foods. Parents encourage their baby to move and crawl but prevent them from crawling into dangerous places. Many parents will have learned that, from the start, their infant is extremely good at letting them know their personal preferences. The tiny infant will be adept at spitting out non-preferred tastes, at repeatedly crawling towards the stairs despite being stopped each time, and so on. So, be reassured: conflict, opposition and challenge are a normal part of parenting. Challenging, difficult behaviour occurs throughout childhood and adolescence, as you can see from each of the examples below which illustrate normal behaviour across different age groups.

Case Study – Bailey (5 months old)

Bailey is the second child in the family. She has an older brother Tyler, aged two, who is an active toddler, but mum describes him as having been an easy baby. In contrast, Bailey has always seemed more difficult; she takes a long time to feed, has been colicky, doesn’t sleep for long periods and only settles when she is held. Bailey only seems content when mum is holding her, and she cries when mum tries to put her down. She has started to cry if anyone else holds her and seems to only want mum. Her cries get very loud if mum doesn’t pick her up immediately.

Bailey’s mum feels tired, exhausted and at a loss as to how to manage this.

Case Study – Zahir (4 years old)

Zahir has an older sister, Zara, who is seven years old. Mum says Zahir has tantrums whenever he can’t have his own way. She says he seems to know exactly when to have them, so she has to give in. For example, Zahir will scream and cry when mum says he has to do something, so she is often late collecting her daughter from school because Zahir refuses to leave the house or the park or put on his coat.

Zahir’s mum feels that every day brings conflict and tantrums. She doesn’t want to give in but sometimes feels she has no option.

Case Study – Miriam (8 years old)

Miriam has two older sisters aged nine and eleven and a younger sister aged four. Miriam is described by her stepfather as strong-willed. He says she is very intelligent and can be very loving towards her younger sister but once she has made her mind up about something, no amount of reasoning can change it.

Miriam’s stepfather says he thinks she sometimes creates arguments just for the sake of it. For example, insisting she sits in the front seat of the car can create an argument that goes on for hours. She has recently decided that she won’t eat anything green.

Miriam’s stepfather says she is exhausting, and he has tried everything he can think of to try to avoid conflict and arguments.

Case Study – Andrew (15 years old)

Andrew is the oldest of three children; he has a brother aged twelve and a sister aged ten. Andrew’s parents say they don’t know him any more as he never communicates with them. Andrew comes home from school and goes straight to his bedroom. He takes his food to his room, hardly speaks to his parents and is rude to his brother and sister. If they ask him to join the family or bring down his used plates, he ignores them or yells. Despite this, Andrew is doing well in school and his teachers say he is well behaved and sociable.

Andrew’s parents have tried threats to remove his laptop and phone. They have tried offering treats and rewards if he carries out a chore, but nothing works to make a long-term change.

Bailey, Zahir, Miriam and Andrew are all showing behaviours typical of their ages and stages of development. None of them have problems – they are just doing what comes naturally to maintain the things in life that give them pleasure. For Bailey, this means keeping her mum close to her. For Zahir, this means doing what he wants to do, rather than what his mother wants him to do. For Miriam, this means wanting to be in control and getting her own way, so she is bossy and argumentative. For Andrew, this means being a teenager and doing things that most of his friends will value, such as gaming or social media contacts.

When Your Child is Unwell

Some of you reading these examples may feel that you wish you had such simple parenting issues. For you, your child’s health condition has meant your child has always had other more important things to cope with. Common difficulties, such as the examples above, are easier to manage if you have a healthy child. At times, all parents have to demonstrate ‘tough love’ and do something that their child will not like but which will benefit them in the longer term. While applying ‘tough love’, parenting can be difficult for any parent; when your child has been born with a serious medical condition, has become unwell or has long-term physical and/or developmental needs requiring constant attention and daily treatment, your priorities as a parent may well be focused on managing their health needs, and managing their behaviour may seem less important.

There are three factors commonly reported by parents that affect their parenting style: the impact of the diagnosis; the impact on their confidence as a parent; and, finally, being able to be firm with a child who already has additional difficulties due to their health condition.

First, impact of diagnosis – as discussed in Chapter 2, the time of diagnosis can be overwhelming emotionally and even traumatic, and many parents report that from this moment there is a shift in how they see their relationship with their child. In a way, many parents feel the need to become ‘super parents’ in order to manage the additional responsibility of their child’s illness, as well as managing the normal or typical difficulties any healthy child might experience.

Second, lack or loss of confidence as a parent – many parents report a loss of confidence or difficulty in establishing a comfortable role as a parent in authority. These comments are so frequently reported as to be completely normal in themselves. In fact, many health professionals very often marvel at the amount of daily tasks achieved by parents of children requiring so much medical treatment and clinic appointments, as well as juggling family life and work – but parents often have no idea they are held in such high esteem; more often than not, they think the opposite.

Third, being firm feels like punishment – it is much harder to set limits and stick to them when you hate to see your child unhappy, especially when you feel they have enough hardship in their life already. However, sometimes being a loving parent also includes ‘tough love’ – in the short term the child might not be happy with the limits or rules you set, but in the long term they will benefit from the security of boundaries.

Being a ‘Good Enough’ Parent

Every few years a new trend or fashionable childcare manual appears – there are thousands of them. However, there are some basic parenting principles that will always work no matter what the fashion or challenges. There is also one very important thing to remember: there is no ‘perfect’ way to be a parent. It is not always easy, so set your expectations at an achievable level and aim to be a ‘good enough’ parent rather than a ‘perfect’ parent.

Many parenting experts make a similar statement at the start of their advice: being a good enough parent requires one basic feature – love for your child. What all the comments from parents above describe is their love for their child. A very strong need to protect your child because of their fragility due to their medical condition can lead to particularly intense feelings of protectiveness.

Top Ten Parenting Techniques

The following guide shows the Top Ten parenting techniques that work if done correctly and consistently. The section after that shows how the techniques can be applied in real-life examples for a range of behavioural difficulties and age ranges of children.

  Top Ten Parenting Techniques

1 – Avoid unnecessary confrontations

Save it for when it matters – if they want to wear wellies when it’s hot, why not? You don’t need to control everything, so better to save the effort for the important things you do need to control.

Age range: Especially good for pre-school age.

2 – Distract and divert attention

Really works with young children; when you sense a battle building, quickly point out something interesting and head off any approaching conflict.

Age range: Especially good for pre-school age.

3 – State clear expectations

Don’t ask a question if you want compliance. We very often ask a question when we aren’t really giving an option. For example, we might say, ‘Would you like to do your treatment now?’ What you actually mean is: ‘It is time to do your treatment now.’ Make your intention clear and, whenever possible, in a positive way. For example: ‘I am going to put your favourite programme on the TV and we will do your treatment while we watch it . . .’ or ‘You can watch TV now while you do your nebuliser.’

Age range: Good technique for all ages.

4 – Ignore tantrums whenever you can

They are intended to get your attention. If you give it, they will get louder; let them fizzle out by ignoring them whenever you can.

Age range: Especially for early childhood, though watch out for teenage tantrums – e.g., door slamming and shouting. They are often better ignored than confronted as the confrontation can make them worse.

5 – Cut down on commands

Notice how often you tell your child what to do compared to how much time is spent in to-and-fro conversation. Use ‘descriptive commenting’ where you just describe or comment on what it is they are doing and use positive comments when possible:

‘You are setting up the farm with all those animals really well . . .’

‘Thanks for your help bringing down your laundry . . . it’s so good when I don’t have to nag you.’

Age range: All ages benefit from this technique.

6 – Decrease the number of times you say ‘no’

Many parents find themselves saying ‘no’ more often than they tell their child what would be better to do instead. Rather than saying, ‘No, you can’t play on the iPad now . . .’ try saying, ‘When you’ve done your reading, then you can have some time on the iPad.’

Age range: All ages benefit from this technique.

7 – Give attention for what you want to see, not what you don’t

Parents often spend more time with their child when they are doing something they shouldn’t be doing, rather than when they are doing something well. Children thrive on attention – if they are getting attention mostly when they are doing something they shouldn’t, they will still enjoy this type of attention, too. Teenagers are also thirsty for attention and will often do something reckless or risky to get a response from you.

Age range: All ages benefit from this technique.

8 – Don’t criticise

No one likes it. If you want to encourage your child to do something well, praise any attempt they make, even if it is far from perfect.

Age range: Older children and teenagers benefit from this technique. Teenagers can be particularly sensitive to criticism.

9 – Set limits and boundaries

Boundaries give children a sense of security and that you are looking out for them, and young children need parental guidance and to be told when enough is enough. A ‘boundary’ is letting your child know what is acceptable and what is not and sticking to your rule. If you say only one biscuit before dinner, then keep to your rule. It is the same for older children; if you say electronic equipment has to be switched off at 10 p.m., then make sure you stick to your rule.

Age range: All ages benefit from this technique.

10 – Be consistent

If you set a limit or consequence, stick to it. Children quickly realise when they can argue their way out of a consequence. Don’t threaten them with something you can never follow through on.

Age range: All ages benefit from this technique.

How to Apply the Techniques in Real Life

The following case examples illustrate the use of the techniques given above. When you are in the middle of managing a difficult situation, it is not always easy to be able to identify for yourself exactly what it is that you are doing, or your child is doing, that is contributing to the difficulty. If you read through these examples, this may help you to think about some of the possibilities as identified by other parents. Using the checklist of ten techniques should also help you to identify if one of these could be relevant to what is happening.

There is a four-step approach to considering how to change the way you manage your child’s behavioural difficulties:

Step 1 – Take a step back and think about what is going on in this situation. ‘What am I doing? Why isn’t it working?’

Step 2 – Use the table to identify the parenting techniques that you are currently using and review how well they are working.

Step 3 – Build on your successes and parenting skills. ‘When am I successful at getting my children to do what I say?’

Step 4 – Make a plan of action; what to ignore, what to say, what technique to use.

It may help to talk it through with someone you trust – your partner or a good friend or relative – since they can help you ‘step back’ and reflect on what is happening. It is not always easy to do this on your own. It is also helpful to have them on board, so they are using the same consistent techniques.

Common Problem 1 – My Child Won’t Co-operate with His Medical Treatment

Case Study – James (9 years old)

James has cystic fibrosis (CF). This is a life-long genetic condition for which there is currently no cure, but improved treatments mean people with CF can now expect good quality and quantity of life. However, in order to achieve that there is a daily treatment regime of tablets and chest physiotherapy as well as regular clinic visits to monitor lung health and any infections. James needs to take daily tablets (vitamins and antibiotics); a pancreatic enzyme supplement when eating food containing fat; do chest physiotherapy exercises twice a day; and nebulisers containing antibiotics and drugs to thin secretions in the lungs several times a day.

James lives with his mother and an older brother who doesn’t have CF. James has got fed up of all the things he has to do every day because he has CF. James feels well, like a ‘normal’ boy, so he joins in all the same things as his friends at school and he can’t see the point of having to do all this treatment. James’s mum is at the end of her tether. She knows how important the daily treatments are for keeping James well. James used to do everything very well but now he runs away and won’t do it. James’s mum has tried what she calls blackmail: ‘If you do it, then I will buy you some something as a treat.’ She has tried what she calls threats: ‘If you don’t do it, I will take your iPad away.’ Nothing seems to make a difference.

James’s mum’s approach

James’s mum followed the four steps to help her understand what was and was not working:

Step 1 – Take a step back

What is going on? What am I doing? Why isn’t it working?

James’s mum could see that she has become so concerned about his condition that when she thinks about James her focus is totally on his CF and treatment. She has placed it uppermost in her mind and so, as soon as James gets in from school, she is ‘prepared for battle’, with her sole concern being him getting his medical treatment. From James’s perspective, CF was not the most important thing in his life. He was much more interested in playing with friends at school and games on his iPad.

Step 2 – Review current parenting techniques
(from Top Ten techniques above)

James’s mum saw she was making some errors:

Technique number 3 – ‘State clear expectations’: James’s mum realised that she was not being clear and had resorted to nagging. She would say, ‘James – physio!’ . . . ‘James – nebuliser!’ but wasn’t clear about how, what and when.

Technique number 5 – ‘Cut down on commands’: James’s mum was issuing a lot of commands and getting increasingly irate as James refused to co-operate.

Technique number 7 – ‘Give attention to what you want to see, not what you don’t want’: James’s mum considered this to be where she was mostly going wrong. She predicted from the outset that James would be difficult and so almost immediately she would say something like, ‘No arguments tonight, treatment is getting done.’ James would disappear, and she would shout intermittently, ‘Come on, treatment now.’ She gave him lots of attention for not doing his treatment.

Technique number 8 – ‘Don’t criticise’: James’s mum recognised that she was being very critical of James for not doing his treatment and that a lot of the comments she made to him were focused on CF and her disappointment in him that he was not co-operating.

Step 3 – Build on your successes and parenting skills:
‘When am I successful at getting my children to do what I say?’

James’s mum identified that she was able to get both her boys to follow certain household rules in that they were polite and helped with some chores and James would get dressed and ready for bed easily. Thinking about one of these tasks – e.g., cleaning teeth – James’s mum could see that she was not making any parenting errors and was following the strategies by:

Technique number 3 – ‘State clear expectations’: Being clear about her expectation about cleaning teeth before bed and ensuring that James knew how to do it.

Technique number 7 – ‘Give attention for what you want to see, not what you don’t want’: Giving attention for what she wanted so that James knew his mum was pleased with him for being ready at bedtime.

Technique number 8 – ‘Don’t criticise’: Though cleaning teeth might seem like a minor achievement, James’s mum remembered that she was very good at teaching James and how pleased he was with her satisfaction in his success.

Step 4 – Plan of action

James’s mum decided to start with one small part of the treatment routine – one nebuliser – and identified the following strategies to put into practice:

•    Clear expectations – She worked out how to make clear to James what the new rule was and what she expected of him. She would get the nebuliser ready and sit with him while he did it.

•    Attention for what she wants to see – She agreed with James what they would do together while he used his nebuliser and that she would stay with him until it was done.

•    Praise – Giving praise and approval for completing the nebuliser, then the task is completed and James is free to get on with other things of his choosing.

•    Gradual build-up of new treatment tasks – This is so that James gradually builds up the required tasks, resulting eventually in all his daily treatments being accomplished. This should be through a phased process at a pace that results in them being successfully done and not pushed all at once.

Common Problem 2 – My Child Won’t Co-operate in the Clinic

Case Study – Tanya (6 years old)

Tanya was diagnosed with epilepsy a year ago. She has two older half-brothers aged eleven and thirteen. Her oldest brother has a diagnosis of autistic spectrum disorder.

Unfortunately, Tanya continues to have frequent seizures and is having regular reviews with the neurology clinic. At each clinic appointment, Tanya must be weighed and measured to check the correct dosage of any medications that might be prescribed. She needs to have telemetry [measurement of brain activity] which requires her to wear a helmet, and she needs to be seen by the neurologist and sometimes the neuropsychologist to check her learning and development.

As soon as Tanya arrives in clinic, she heads for the toys and then refuses to budge. Mum frequently has to carry her to the room to be weighed and sit on the scales with her. Very often, Tanya’s height cannot be accurately measured. Tanya has a tantrum when called to the telemetry room and the technicians cannot conduct the procedure. The neurologist has to make treatment recommendations based on mum’s report rather than an accurate measurement. Mum is concerned that the medical team think she isn’t a good mother and that Tanya will get worse and require a hospital admission.

Tanya’s mum’s approach

Step 1 – Take a step back

What is going on? What am I doing? Why isn’t it working?

Tanya’s mum recognised that she had been overwhelmed by the diagnosis and worried that she would not be able to cope as she already found managing her eldest son with autistic spectrum disorder to be very difficult. Tanya’s mum acknowledged that she had not been very good at being firm with Tanya and was already losing confidence in her abilities as a mother and believed that the medical team were critical of her.

Step 2 – Review current parenting techniques

Tanya’s mum thought that the main area where she was going wrong was with technique number 9 – not setting sufficient limits or boundaries. When arriving in the clinic, Tanya’s mum felt helpless and just crossed her fingers that Tanya would behave. She recognised that Tanya could be feeling scared and chaotic, exactly the way she was feeling.

Step 3 – Build on your successes and parenting skills:
‘When am I successful at getting my children to do what I say?’

Tanya’s mum felt that there were lots of times when she enjoyed being with Tanya and described Tanya as being very creative. She could see that she was good at giving attention for what she wanted to see when Tanya was making pictures and models. She was good at giving praise, accepting Tanya’s decisions, valuing what she created, and she didn’t interfere or criticise when Tanya made things.

Step 4 – Plan of action

Tanya’s mum decided that her first action was to anticipate that Tanya was worried about going to the clinic and having all the procedures and so she planned to go to the appointment armed with a bag full of creative activities to distract Tanya.

Therefore, Tanya’s mum was clear they were going to the weighing room and she discussed in advance what activity would happen in there; mum was ready to be full of praise for Tanya showing any small sign of co-operation and ready to ignore any tantrum by focusing her attention on the clinic staff and discussing the creative activity they had brought with them with the idea that this would engage Tanya in her art.

Tanya’s mum also planned to be more confident herself, to inform the neurology team that she was trying to support Tanya’s worries, and her own, and to discuss with the medical team whether it would be possible to reduce the number of tests and assessments attempted in clinic in order to increase the chance of being able to complete them successfully.

Common Problem 3 – My Child Gets Upset and Sad When She Has to Go into Hospital

Case Study – Ayesha (10 years old)

Ayesha has kidney disease and needs regular admissions for kidney dialysis. This has to be done in hospital for safety reasons. Ayesha needs to be attached to the dialysis machine and stay at the bedside for several hours. Ayesha is an only child; she is intelligent, and her parents report that she is always well behaved and quite an easy child.

However, whenever her admission approaches she cries and cries and begs her parents not to take her. Both parents have tried reasoning with her, explaining why they must take her, but Ayesha says she hates it, hates being ill and wishes she was someone else. Both parents are heartbroken when they arrive. Ayesha is always silent during her admission; she reads her books by her bedside.

Ayesha’s parents’ approach

Step 1 – Take a step back

What is going on? What am I doing? Why isn’t it working?

Ayesha’s parents acknowledged she was a very precious child as she was the only one they had managed to conceive, although they wanted more. Mum reported that she always felt slightly ostracised from some family members for only having one child, so Ayesha’s diagnosis had hit them hard and they were constantly fearful they would lose her. It was difficult for Ayesha’s parents to ask for emotional help from health professionals because, within their own culture, it was not considered acceptable to discuss concerns outside the family. Mum could see that their tendency to be private was also mirrored by Ayesha.

Step 2 – Review current parenting techniques

Ayesha’s parents identified that they were ending up struggling with technique number 7 – they were actually giving attention for what they didn’t want to see. Although Ayesha’s parents were giving appropriate attention to her worries, they were inadvertently reinforcing her repeated patterns of behaviour. The strategies they had tried were not successful, but they were at a loss what else to do. There was a feeling of acceptance of the status quo and that nothing could change.

Step 3 – Build on your successes and parenting skills: ‘
When am I successful at getting my children to do what I say?’

Technique number 1 – ‘Avoid unnecessary confrontations’: Ayesha’s parents were very good at positive parenting, Ayesha was a polite and well-behaved girl, and they avoided unnecessary confrontation.

Technique number 7 – ‘Give attention for what you want to see, not what you don’t’: Ayesha’s parents were excellent at demonstrating how proud they were of everything Ayesha did.

Step 4 – Plan of action

They planned to use techniques number 4 and 2 – ignoring Ayesha’s tantrums, and distracting her wherever possible. Although Ayesha had good reason to become upset prior to her admission, the pattern of behaviour needed to be broken. The family had to break the habit of reinforcing Ayesha’s crying and divert it instead.

They also planned to use technique number 9 – setting clear boundaries. Ayesha’s parents had to be firm; there was no choice about the admission and it was out of their control. As good, responsible and loving parents they had to take care of her health and wellbeing, and that required her medical treatment. They could not therefore give in to her request to not take her to hospital. They could, though, help her think of things she could do while she was in hospital.

Common Problem 4 – My Child Hates Having Procedures Done

Case Study – Daniel (4 years old)

Daniel has a diagnosis of coeliac disease. This means he cannot digest certain food types and needs a restricted diet as well as daily medication. Daniel needs to go to hospital clinics regularly to have a range of tests done to monitor the progress of the disease and how well the diet and medication are doing at keeping the disease under control. These tests vary each time he attends depending on his symptoms and on the recommended timings of different tests.

Sometimes Daniel needs to have blood taken, scans of his stomach and bowel, or more invasive tests which require an anaesthetic and a look though a camera. Daniel is too young to understand why he needs to have visits to hospital and then painful or uncomfortable procedures done to him.

Daniel has a baby brother and lives with both his parents. Daniel’s mother reports that he ‘hits refusal mode’ as soon as they arrive at the hospital. Both parents have to bring him to the clinic in order to support each other and help manage what they predict will be difficult behaviour in Daniel. Mum feels guilty at having to leave his brother behind, as well as knowing she is going to have to force Daniel to have horrible things done. His parents often have to hold Daniel tightly to make sure procedures can be done without accidental injury. She worries about the long-term emotional damage that might be done by going through this regularly.

Daniel’s parents’ approach

Step 1 – Take a step back

What is going on? What am I doing? Why isn’t it working?

Daniel’s parents recognised that they had the view that he had suffered enough. They felt that he had been through so much and that they had become angry at his medical diagnosis and frustrated with the medical team who seemed to continually assess him. They recognised that they had also somewhat ‘hit refusal mode’. From Daniel’s perspective, they acknowledged that he was always having horrid things done to him and they felt powerless to prevent them. Rather than think of ways to help him manage the procedures, they wanted to stop them from occurring.

Step 2 – Review current parenting techniques

Daniel’s parents could see that they were less successful with technique number 3 – not being able to set clear expectations of what they would do and what he would do on arrival in clinic, in part because they were never completely sure what would be required, but also because they predicted he would refuse to have the tests or procedures.

Technique number 7 – ‘Giving attention for what you want to see . . .’: Mum recognised that she spent a lot of time trying to cajole him, so – without meaning to – was giving him lots of attention for refusing to co-operate.

Technique number 10 – ‘Be consistent’: Mum was able to see that she didn’t stick to the boundaries for much of Daniel’s behaviour and neither did his father; they both wanted to be good cop and hoped someone else would step in and be bad cop.

Step 3 – Build on your successes and parenting skills: ‘
When am I successful at getting my children to do what I say?’

Mum and dad said they were both good at praising and managing Daniel’s diet. It had been difficult finding ways to distract him from forbidden foods, but they had been creative, and Daniel was now very accepting and starting to know himself what he couldn’t eat.

Step 4 – Plan of action

Daniel’s parents felt they needed to gain more control over the clinic visits so that they had a clearer expectation of what the visits would involve. So they decided to put into action techniques number 9 and 10 around setting boundaries and being consistent. First, they needed to be clear with Daniel that he was going to have the test; he could choose which parent sat with him and which toy or treat he could have afterwards. Both parents had to agree to and stick to the same rules.

They also implemented techniques number 5, 6 and 8 around fewer commands, reducing saying ‘no’, and cutting out the criticising. Both parents cut down on commands and just restated the one instruction. They decreased the number of times they told Daniel off or said ‘no’ or ‘don’t do that’, and gave him attention for following one instruction instead.

They were very aware that they frequently used questions when they didn’t mean to. They noted that they said, ‘Daniel, shall we go with this lady?’ hoping that Daniel would see it was her desire to do the horrid test and not theirs but, in fact, Daniel assumed his parents were giving him a choice and so was angrier when they didn’t do as he said when he replied ‘No!’

Common Problem 5 – My Child is Really Aggressive and Disobedient at Home after We Have Been to Hospital

Case Study – Morgan (7 years old)

Morgan has a diagnosis of leukaemia. So far, she has been admitted to hospital four times for five to six days each time. She has had treatment that has been painful and unpleasant; she has to stay in her cubicle when having her treatment and has missed a lot of school. Thankfully, she is responding well to treatment and the expectations are that she will make a good recovery and will soon return to her normal life.

Morgan has an older sister aged nine and lives with her mum and stepdad. They report that as soon as Morgan is home after discharge from hospital she becomes aggressive, often physically aggressive to her sister. Morgan refuses to do anything she is asked to do if she doesn’t want to do it and the family ‘walks on eggshells’. Mum is worried that she has lost any authority over her daughter and Morgan has become ‘not a nice girl’ as a result of her illness. Mum is also worried about the effect it has had on her other daughter, who always gives in to Morgan.

Morgan’s parents’ approach

Step 1 – Take a step back

What is going on? What am I doing? Why isn’t it working?

Morgan’s mum said that the diagnosis had been the beginning of a shift in her relationship with her daughter. The diagnosis was devastating and traumatic and she had expected her daughter to die. Information from the hospital team and other parents on social media had been supportive and Morgan’s mother became more optimistic about the prognosis. However, she recognised that her initial reaction was one of fear for her daughter and for herself. Mum and stepdad were also aware that the trauma and uncertainty around the diagnosis had meant it was almost a taboo subject within the family It was not easily talked about and they didn’t really know what Morgan or her sister felt or understood.

Step 2 – Review current parenting techniques

Technique number 9 – ‘Set limits and boundaries’: In thinking about Morgan’s behaviour at home, both mum and step-dad could see that limit-setting was their biggest problem area. They had been very accepting of Morgan’s disobedience and were not in a stable frame of mind to be able to do anything about it.

Step 3 – Build on your successes and parenting skills:
‘When am I successful at getting my children to do what I say?’

Mum and stepdad knew that things settled down after a few days of leaving hospital and Morgan became manageable. They recognised that their other daughter was always well-behaved which must mean that they had some good parenting skills.

Step 4 – Plan of action

Mum and stepdad decided that they needed to start by talking more openly with the children about leukaemia and to take advice from the healthcare team.

They also recognised that they needed to consider applying techniques number 9 and 10 – setting boundaries and being consistent. They realised that they needed to redress the balance in the home and ensure both girls understood that disobedience and aggression were not acceptable, that it would not now be possible for Morgan to get away with it and unacceptable for her sister to have to put up with it.

Key Points

•    Tantrums, opposition and difficult behaviour are a normal part of childhood development.

•    There are some fundamental parenting techniques that underpin basic behaviour management.

•    Being a good enough parent of a child with a physical health condition can be more challenging due to the:

*    Impact of the diagnosis

*    Confidence levels in being able to cope with the demands of the diagnosis

*    Being able to impose firm boundaries with children who seem to suffer enough

•    Typical challenges surround managing treatments, clinic attendance, investigations and tests and admissions.

•    Parents can be helped to review their parenting practice and goals by taking a stepped approach:

*    Take a step back

*     Review parenting techniques in relation to the illness challenges

*    Review current successful parenting practices

*    Plan of action for areas of redressing the balance, bringing about change •    If you find it hard to be able to take a ‘step back’ from the situation or if you find you can’t identify these steps yourself, you may want to get further advice – ask your medical team or your GP for advice about who could help.


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