Pain can have a huge impact on a child’s life and all their family members. How much impact will depend on a number of factors, including the type and duration of the pain, the treatments required, and the disease or injury that is causing it. How well your child and family learn to cope with the changes demanded of them will also be important.
Chronic pain may require permanent lifestyle adjustments, and may make your child susceptible to depression. Shorter bouts of acute pain can cause social disruption for both the child and family. But, because it is by definition temporary, things will generally resolve themselves in the short term.
Most of this section is focused on how to deal with the impact of chronic or recurrent non-cancer pain. However, many of the principles outlined are relevant to those parents whose children are suffering from acute pain.
Some children and families adjust very well to ongoing pain issues. However, others may have to confront and deal with some of the problems that are outlined here. The more informed you become, the better equipped you will be to deal with all issues arising from a family member living with chronic pain. Most importantly, you should keep a positive attitude and be prepared for what may come.
Chronic pain can disrupt all aspects of life, including mood, sleep, physical activity, socializing with friends and family, and school or work activities. Having an understanding of how pain can affect these aspects of your child’s life is the first step in learning strategies to help them manage pain and live a normal life.
Mood and chronic pain
Living with pain for a long period of time can adversely affect how your child feels about themselves. Psychological factors such as depression and anxiety may occur. Frustration resulting from physical limitations may also occur. Often physical and psychological factors are linked. For example, your child may not be able to participate in the same sports they enjoyed prior to the onset of pain. A child who is physically restricted in such a way might get depressed. In turn, this will reduce the motivation to become more active. The goal is to avoid this kind of vicious circle.
One way to help improve your child’s mood is to help them learn how to take control of their pain and to become as independent as possible. Your child knows their pain better than anyone. So they are in the best position to know what works and what does not. The more your child can take control of their pain, the more they will be able to be independent which, in turn, will produce psychological benefits.
If the pain is expected to continue into adult life, they will need to get used to the idea that eventually they will have to take control of their life without relying on their parents. The earlier children are taught to manage their own treatment, the better they accomplish this as adults. For a more detailed discussion of the transition from childhood to adult health care, see the "Moving from Paediatric to Adult Care of Chronic Pain" page in the "Looking Ahead" section of this site.
School and chronic pain
School is the major focus of most children’s lives. In addition to school being a place to learn, your child’s social life and sporting activities are often centred on school. A long absence from school creates disruption in all these areas. The child can fall behind in their studies, they can lose their place on teams, and the social scene progresses without them. The longer it takes to return to school, the more difficult it may be for your child to return to their studies and the other social activities that revolve around school.
Some children are pleased to be out of the drudgery of school and may resist attempts to get them back into class. Other children cannot wait to get back to school. Regardless, children should go back to school as soon as possible so as to maintain as normal a life as possible and to minimise the difficulty of returning. With the help of your child’s pain management team, a plan should be developed to help achieve specific goals that are important to your child.
The child’s goal may be "I want to attend school." However, the plan may be to start slowly and allow attendance for two or three half days per week. After that, they can work up to full-time attendance gradually. You may need to arrange to have schoolwork sent to your child if they are not attending regularly.
It is important to help your child set realistic expectations about what they can achieve in relation to their schooling. Stress from trying to achieve high grades or to catch up on missed work often makes the pain problem worse. Intense pain, as well as some pain-relieving medications, can also affect a child’s ability to concentrate on schoolwork. Helping your child to learn how to pace themselves with schoolwork is important.
School is a place where behavioural and psychological techniques for coping with pain can be very useful. Your child should be taught coping methods, such as deep breathing and relaxation, that can be done somewhere at school.
Parents are encouraged to speak to school officials directly about their child’s chronic pain problem. The school administrators should understand your child’s situation and the expectations concerning prognosis and the future. Parents should not assume that teachers and others at school necessarily understand the nature and possible impacts of chronic pain. If possible, medical information should be distributed to teachers and to those in the administration.
Parents may wish to develop a plan to inform their child’s classmates of their condition and the reason for their absence from school. If this strategy is being considered, your child should be allowed to decide what, how much, and when to disclose information, as well as to whom.
If your child is taking medications at school, the teachers and school administrators should be informed. It might also be a good idea to ensure that someone responsible at the school has some of each of the medications in case your child cannot find what they need during the day. When pain medications are scheduled during the school day, you need a letter from your doctor informing the school. Included in the letter might be such information as when to give each medication and how much to give.
Socializing and chronic pain
Along with changes within the family, it is likely that your child’s friendships will be affected. They may have been absent from the social scene for some time. And, even when they are back socialising with their friends, they may not be able to participate fully in the typical social activities that their friends are interested in.
For a teenager taking medications, there are additional risks. They may be under pressure to drink alcohol and to take street drugs. This pressure can be difficult to manage even for teenagers who are not taking pain medication. It is most important that your child understand that their medications may put them at additional risk. Moreover, your child may be put under pressure to share their medications with others.
They should be encouraged to discuss the issues with you and with their health-care professionals in order to work out solutions. This promotes the feeling of normalcy that is important for ongoing pain management. In particular, the rules that exist for other siblings in the home should be the same for the child with chronic pain. A more in-depth examination of these and other issues involving teenagers in chronic pain can be found in the "Chronic Pain and the Teenager" pages in the "Looking Ahead" section of this site.
Hobbies and chronic pain
Hobbies, such as sports, music and other activities, should be continued with the overall goal being to return your child to as normal a routine as possible. Depending on the severity and nature of the pain, it may not be possible for a child to return to their same hobbies. For example, if your child used to build model planes but pain affects their motor skills, picking up where they left off may not be realistic. It might be necessary for your child to develop new hobbies that can be enjoyed within the limits of their abilities.
Sleep and chronic pain
Pain commonly disrupts sleep. Lack of sleep can be very detrimental. It can make concentrating difficult and adversely affect your child’s mood. They may already be susceptible to depression because of their condition. A return to regular sleeping patterns is an important part of the overall goal of achieving a life that is as normal as possible.
There are several strategies that can be used to help your child get back to regular sleeping patterns. If your child is taking medication to relieve pain, the medication should be given to them at the first sign of pain. Waiting until pain is intense before taking the medication makes it harder to control. Additionally, if medication can be taken just before bedtime, this may help your child have a pain-free and uninterrupted sleep. It is important to establish a nightly bedtime routine for them. It is also important to avoid things that will cause stimulation before bed, such as heavy exercise and drinks or food containing caffeine, such as pop, coffee, tea, and chocolate. The chronic pain clinic may have more suggestions about how your child can get a good night’s sleep.
Effects of chronic pain on the family
Chronic pain can have an enormous impact on the family. It may well be that parents, and possibly older children, will be called upon to devote large amounts of time to helping their family member who is in chronic pain. This time investment will shorten the amount of time that other family members would, under normal circumstances, have to themselves. This can create frustration and resentment.
A younger child, for example, may not understand why their parents are spending so much time with one of their siblings. To them, it may appear as if the parents are playing favourites. In situations where chronic pain is unexplained, the resentment can be compounded by disbelief. The brother or sister of a child with unexplained chronic pain may not believe that there is pain present at all. This can be very disruptive. Helping siblings understand the chronic pain experienced by their brother or sister is an important step in preventing these feelings. It is important for parents to set aside time to spend with other members of the family.
Communication
Chronic pain can affect all members of the family. The overall goal is to have your child lead as normal a life as possible — that is, a life close to what it was before the pain. This will require communication within the family. A return to normal does not mean ignoring problems and feelings. Although it may be difficult to arrange, all members of the family should feel able to express feelings about their situation. Communication is a first step to making things better.
Often, there are support programs for families that are caring for a child with chronic pain. If these exist in your area, it is recommended that you take advantage of them. Just as you should not wait for pain to be unbearable before administering pain-relieving medicines, you should not wait for a family breakdown before seeking available support services. Ask the health professionals at the hospital or at the pain clinic for help or information about where to get help.