Having a child with medically complex needs is not easy – and even when parents/caregivers develop excellent skills in providing specific care, other problems – especially those relating to the child’s behaviour – can and do arise. For example, children may:
Oppose or refuse care
Move around so much that care cannot be provided safely
Refuse to take medications
Request unreasonable rewards if they comply with the treatment (eg, money or expensive toys)
Display other “undesirable” behaviours…
If your child is demonstrating these types of behaviours, please discuss this with your health care team and ask if a member of the team, such as a child psychologist, child life worker, social worker or nurse would be able to help you find solutions that fit your child specifically. If you do nothing, and the behaviours persist, they often get worse with time and create negative stress – for you, your child and also for the family.
To get you started, see below for common behaviour problems, and tips on dealing with them.
Contact us if there are other behavioural problems that you would like addressed here. Always seek the advice of your child’s healthcare team for specific advice relating to your child and family.
Refusal to cooperate with care
Stay calm yourself.
Explain the care in a simple way that the child understands.
Speak slowly and in a calm, reassuring voice.
Try medical play as a way to familiarize your child with the procedure. This can also help you understand your child’s perceptions
Build a predictable routine for care with your child.
Use distraction and positioning for comfort.
Talk to your healthcare team for more solutions.
Get angry; it may make the situation worse
Threaten your child with punishments.
Use “brute force” to complete the therapies; this can traumatize children further.
Refusal to take required medications
Approach medication administration the way you approach putting your child in the car – though there may be some fuss about the seatbelt! – there is no question that the parent will drive with an unsecured child. Children learn quickly what is “negotiable” and what is “non negotiable” with their parents.
Keep your attitude positive. Talk to your child in a happy, confident voice when you are giving medications. Even young infants will respond positively to the soothing sound of their parent’s voice.
Set up a routine for taking medicine.
Designate a place in your home to give medications (preferably not in your child’s bed or bedroom).
Give your child a verbal or visual cue so that he realize that it is time to take medications eg, show a baby the syringe or tell a young child: “Time to take your medication.”
Aim to give medications in the same place at the same time. Predictability is a comfort to most children.
Offer your child a comfort object to hold (like a blanket or stuffed animal).
Try the strategies that work best for your child’s developmental stage and interests.
Consider incorporating a song at the beginning or end of each care procedure. Most young children find this soothing.
Talk to your healthcare team if you are having trouble giving medications.
Ask your child if he/she wants to take the medication. This is NOT negotiable.
Try to hide medication in another food serving. Children figure this out quickly and if they eat/drink only part of the food it is impossible to know how much of the medication they received.
Forget to refer to specific tips, by age.
Difficulty in engaging the child in discussion about his/her medical issues
Sometimes parents are at a loss in terms of how to explain and discuss the child’s medical situation with him/her. A child may resent the care necessary and the restrictions involved. Some children may refuse to talk about it. Parents sometimes worry if their child refuses to talk about his/her medical situation. This can be stressful for the parents and the child.
Discuss these concerns with your healthcare team.
Use simple language when discussing medical information with your child
Use drawings, photos, books, toys to help explain medical information
Try medical play to demonstrate care in a non-threatening manner. Medical play will also allow you to explore your child’s perceptions in the setting of play.
Keep in mind that children usually require many repetitions of information. This helps the child incorporate the information and can be reassuring.
Show interest in any of your child’s questions or comments, even if only vaguely related. Answer/explain as honestly as you can and at a level that is appropriate for your child’s understanding.
Start with simple explanations and add more details as your child asks questions or shows interest. If you are not sure how to answer, reassure your child that you can discuss this with the healthcare team at your next appointment
Pay attention to the non-verbal cues that your child shows. This may be evident in play or other actions.
Show empathy. Children with medical complexity often feel that their situation is unfair. Acknowledge that it can be hard to accept, but also show a positive attitude towards coping and try to instil confidence. Make sure that your child understands that the medical problems and treatments are not his/her fault.
Keep asking your child if they understand the diagnosis or how they feel about having that medical condition. This approach may make the child more resistant to engaging in conversation or sharing his/her feelings. Instead, be alert to your child’s behaviours and communications and be prepared to respond when he/she does indicate interest or curiosity in this area.
Lose your patience, even if your child asks the same questions repeatedly. Instead, try to determine if something is not clear; in which case try a simpler explanation.
Ignore your child’s question when it comes at a moment when you are busy. Instead, acknowledge the child’s question and answer it a little later. For example, you could say: “That’s a really important question. How about if we wait until after supper and you and I can sit down together. Be sure to remind me.”
Difficulty separating from the parent
Young children typically prefer the company of their parent or a trusted caregiver and may show resistance when they have to be physically separate from this person. When separation from a parent results in crying, tantrums or excessive clinginess that disrupts usual routines and care, the behaviour should be addressed.
Consider what might be causing the behaviour: a change in the environment, a change in routine, a new stress, which might include a recent illness, or another cause specific to your child.
Talk to your healthcare team to determine if your child is showing developmentally normal difficulty separating form their parent (stranger anxiety is common in typically developing infants starting between 7-9 months of age and often continuing past their first birthday).
Talk to your healthcare team if your child is showing more significant anxiety that is interfering with everyday activities (like attending daycare/school).
Practice separation for brief periods, starting in an environment that your child knows. For example, dropping your child off for a short visit at a relative or friend’s home.
Stay calm and confident yourself when it is time to leave your child. Keep the parting simple and short eg, smile, give your child a quick hug and wave goodbye.
Build consistent routines which help to reassure the child.
Ask your child if it is okay to leave.
Try to sneak off when your child is distracted (this can result in mistrust).
Delay seeking advice from your healthcare team if your child has a level of anxiety that is interfering with normal activities, like sleeping, eating, and attending school or daycare.
Forget that some children show signs of anxiety and stress through symptoms like headaches and stomach aches.
Refusal to go sleep (or stay asleep alone)
While handling typical sleep problems in healthy children is generally straightforward (for example, establish and maintain going to bed routines, being consistent in your responses to your child, etc), the issues can be much more complicated when the child in question has significant medical complexity. These children may require monitors (which have alarms), noisy equipment (like an oxygen concentrator), or regular surveillance and care (like suctioning) by a caregiver. These may interrupt and decrease the quality of sleep – for the child and for the parent!
The nature of the child’s medical issues may also affect sleep patterns.
Children who have a visual impairment may have difficulty establishing a day/night schedule because they lack the stimulation of light to set their internal hormonal clocks.
Children who have limited mobility, spasticity or dystonia may be uncomfortable in the same position for more than a few hours and thus wake up with pain. Some children with neurological conditions may have seizures during the night that disrupt sleep.
Discuss sleep problems with your child’s healthcare team – it is important!
Establish a predictable bedtime routine including quiet activities 30 minutes before bedtime (reading, quiet play, bath).
Avoid screen time for 1-2 hours before bedtime.
Use verbal or visual cues to prepare your child for bedtime (for example, putting pyjamas on the child and saying it is time to get ready for bed).
Talk with your child’s healthcare team to help find solutions specific to your child.
Ignore a sleep problem that lasts more than a few nights or where there is no obvious reason (like a change in daytime routine) for the change.