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Chronic childhood illness – managing the emotional impact

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Contents

Sometimes children have an illness that is not 'curable' but continues on into adulthood. Coping with chronic childhood illness can be very difficult at first, not only for the child, but for the whole family. In addition to the child's physical health and medical needs, you need to manage the feelings that come with all the changes and health issues.

What is a chronic childhood illness?

  • A chronic childhood illness can be defined as a medical condition that is long term or permanent, and is rarely able to be completely cured.
  • A child with a chronic illness may be ill or well at any given time, but he is always living with the condition.
  • Examples include asthma, epilepsy, diabetes, Crohn's disease and cystic fibrosis.
  • Such chronic illnesses affect the child's lifestyle, and parents will be required to deal with the child's health needs on a daily basis.
  • Chronic illness usually requires regular medical treatment, and sometimes long hospital stays.
  • Once the illness is routinely managed, most children can function well and live relatively normal lives.

Impact of chronic childhood illness

  • Depending on the illness, the child may experience symptoms of discomfort and pain.
  • Sometimes the treatment for the condition can also be uncomfortable, frightening, and painful.
  • For the child's family, and in particular the parents, it can be very distressing to see your child sick and in pain.
  • In addition to the emotional strain, it will also demand a lot of time, energy, and resources, both personal and often financial as well.

Effect on the Child

The effect that chronic illness will have on your child will depend on a number of things, including the type of illness, what support you have, your child's age, their level of maturity, and their individual temperament. How you as a family cope with the situation, as well as your attitude toward the illness, can also make a big difference in helping your child to manage the emotional impact.

Hospital stays and separations from family

  • Hospitals can be a frightening and lonely experience for a child.
  • How a child copes with these separations will depend a lot on her age. For a baby or toddler, who does not understand much about time, it can be very distressing to be separated from parents. Studies have shown that this stress can even effect recovery times.
  • Most hospitals understand the stress that separations place on children, particularly for children under the age of five years, and make provisions for a parent to stay with their child (see also the topic Children in hospital for more information and ideas for helping your child to manage hospital stays).

Attending many medical appointments and spending time in recovery impacts on opportunities to do activities that other children enjoy

  • Your child may need to attend a lot of medical appointments or spend a lot of time in bed resting.
  • This can result in missing school, which affects opportunities for learning, playing, and making friends with other children.
  • Your child may also be less able to participate in activities that are enjoyed by most other children, eg. playing sport and attending parties. This may lead him to feel "different" from other children.
  • If the illness stops him from doing some things that other children do, and he is prevented from enjoying the same independence as other children, he could become frustrated and angry.

Both the illness and the treatment for the illness can be stressful for the child

  • Your child may experience stress around the symptoms of the illness itself, such as pain and discomfort associated with the symptoms of the illness.
  • She may also experience stress from the treatment, such as injections and operations.

How other children react

  • Depending on how noticeable the illness is, your child may need to cope with reactions from other children eg. being teased at school.
  • He may feel rejected if he is the last to be chosen in team games.
  • On the other hand, if an illness is not so noticeable, he may find it difficult if he can't do things that the other children think he should be able to do.

What parents can do

Talk openly and honestly with your child

  • It is important to talk openly and honestly with your child about her illness in a way that she can understand. This helps build her trust in you.
  • Talk with her about treatment before it happens. When you explain what is likely to happen, she can be prepared.
  • Be honest about any possible pain or discomfort she may experience, but reassure her by explaining that it won't last long, and you will be there to support her during the treatment.
  • If children are not prepared they can sometimes expect the worst and worry a great deal.
  • Medical staff can also help with talking with your child about their illness and treatment.
  • Give plenty of time to listen to your child's questions and concerns, even if they ask the same thing over and over.

Talk openly about the illness with other people in your child's life

  • Talk with teachers and other school staff, the parents of your child's friends, and anyone else who may have responsibility for the care of your child.
  • Sometimes others may be unsure about including your child in an activity such as a birthday party or sleepover because they don't know enough about the illness. Simply talking with them about it and organising a plan about what to do in the event of an emergency, is usually enough to ease any fears or concerns.
  • Encourage other children to know more about the condition also by talking openly about it and answering any questions they may have.
  • By helping others to understand, you can help to make sure that people don't have unnecessary fears or misunderstandings about your child's illness that could have a negative impact on your child.

Encourage your child to continue everyday activities

  • It is really important to try and make as much as possible of your child's life as normal as you can. This can take some time, and is not always easy, but eventually your family can again find a new kind of normal.
  • Ways you can do this include keeping in touch with family and friends, and letting your child take part in the same activities as her friends (with the advice and support from your doctor).
  • It can be easy to let worries make you overprotect your child. This may result in the child missing out on activities that are essential for their healthy development, such as playing games with other children.
  • Like all children, your child needs opportunities to learn through trying all the things that are a part of everyday family life, including:
    • limits and consequences for unacceptable behaviour
    • helping around the house
    • play and doing things with friends
    • school and learning
    • fun times with family, friends, and pets.

All this is essential for helping your child to develop social and other skills, as well as increase her self-esteem and confidence.

Allow your child to have as much 'say' and control over her treatment as possible

  • Even young children need to have some control over what is happening to them, and as children get older, and particularly when they are adolescents, they should be have as much 'say' as possible about their treatment.
  • This will help your child to develop independence and personal responsibility.
  • Children who have ongoing health problems often have lots of things they can't do, and lots of things done to them, without their choice or control so they need to have support to do the things they can.
  • Give your child some choices around how much they would like to be involved in their treatment. This will likely change over time and even on a day to day basis depending on how your child is feeling.

Recognise and respond to the emotional impact of the illness

As well as the physical impact of the illness, you need to think about the emotional impact that the illness can have on your child.

  • Your child may be clingy and reluctant to separate from you if he is feeling worried or stressed.
  • As a child approaches adolescence he may become more self-conscious about how his illness is seen by others, particularly his friends.
  • You can help by encouraging him to talk about how he is feeling, and by reassuring him that his feelings are completely normal and OK. Try to listen most and not give too much advice.
  • Children can also express their feelings in other ways such as through drawing, painting, playing music, or keeping a journal.
  • Reassure your child that you will always be there for him.

Get professional help

  • If your child's feelings are starting to prevent her from enjoying life, you can seek professional help.
  • A social worker or psychologist is often available through your local hospital or community health centre.
  • Signs that additional help may be needed include:
    • problems at school or with friends
    • not wanting to do things
    • seeming depressed
    • big changes in her behaviour.

Effect on the family

  • Taking care of a child with an ongoing health problem can be one of the most difficult tasks a parent can face.
  • Parents often experience a period of grief around the loss of a healthy child, when they realise that there will be an ongoing impact on their child's life, and that it will limit the ability of their child to enjoy the kind of lifestyle that they had hoped and imagined for them.
  • Relationships within the family will be altered, and sometimes strained, as everybody adjusts to the situation and perhaps takes on additional responsibilities. Sometimes other children get a lot less time and attention.
  • Time pressures
    • Parents will need to spend a lot of time on their child's health needs by attending medical appointments and physically caring for their child.
    • Depending on the condition this will sometimes mean around the clock care, which results in disrupted sleep for the child as well as the family.
    • This major time commitment may leave less time for the parents to spend with their other children and each other, as well as their normal social network of extended family and friends.
    • In order to ease some of these pressures, parents may rely on their other children to help out, thus placing expectations on them to take on extra responsibilities and chores.
  • Other pressures
    • There may also be financial worries. The cost of medical treatments and procedures can be expensive for families and sometimes parents need to go back to part-time work, or not work, to care for their child, which can place additional financial strain on the family.
    • If you live a long distance away from medical services, you may even need to move house so you can be closer to health facilities. This will have an impact on the whole family.
    • Parents may even need to find a different job.

These pressures can lead to stress, exhaustion, and tensions within family relationships. However, there are some things that you can do to help support your family, and prevent things from becoming overwhelming.

Ideas for supporting the family

Take care of yourself

As a parent, you need to look after yourself in order to care for your sick child, as well as the rest of your family.

  • Make sure that you are getting enough rest, healthy food, and exercise.
  • Find people that you can talk to about how you are feeling. It does help to have someone who understands to talk to.
  • One way to do this is by joining a support group where you can meet and talk with other parents who care for a child with similar health needs.
    • This can provide an opportunity for you to meet others who are in a similar situation, and who understand some of what you are going through.
    • It will also give you a chance to hear how other parents manage, as well as give you the opportunity to learn, and share, some useful ideas.
  • Find what works for you, whether it's talking with a friend on the phone, keeping a diary, or doing something else to take care of yourself.

Ask for help and support from others

Think about what you are finding really hard to get done and ask for help.

  • Friends, family, and others in your social network are often more than willing to help out if asked, but often they don't know what is the best thing to do. If someone offers their help and support, let them know what you would find useful.
  • Whether it's running an errand, taking your other children to sporting practice, or even just lending an ear for you to be able to talk through how you are feeling, these things can often make a big difference in helping to lighten the load.

Take regular time out

You need to find ways to take some time out for yourself on a regular basis to do something that you enjoy and that makes you feel good.

  • This could be things like going for a walk down the beach, taking a yoga or other exercise class, or meeting a friend for coffee.
  • If you are having difficulty taking time out because you do not have anyone who can look after your child, you could look into options such as occasional child care or respite care in your local area.
  • It is important for your child, as well as for you, that you get some breaks.

Plan regular times for the whole family to have fun together

Try to set some time aside where the whole family can do an activity that is enjoyable and not focused on the illness.

  • The amount of time spent together and the type of activity is less important than the fact that it happens regularly and everyone spends time together, has fun, and enjoys each others' company.
  • When there is a sick child in the family, their needs can take a lot of your time and attention, and the needs of the other children in the family can get missed.
  • Your other children may be struggling with their own feelings and worries about their brother or sister and also their worries about missing out on your time.
  • By giving some regular one-on-one time to your other children, you will be providing them with the opportunity to talk about their worries.
  • It will also give them the opportunity each day to talk with you about the general day-to-day things that are going on in their life.
  • By doing this you are sending a clear message to them that although you may often be busy with their brother or sister, they are equally as important and special to you.
  • Also try to set some time aside on a regular basis to spend with your partner. Having a chronically ill child can place additional strain on your relationship, and it's important to allocate some time where the two of you can spend one on one time talking and connecting with each other as a couple.

Try to keep up regular family routines

Doing what you always do gives a sense of safety and predictability for everyone in the family.

  • It's important for brothers and sisters (and your sick child if possible) to go to school, as well as do their usual after school things such as sporting practice and play with friends.
  • Having regular family routines, even if they have changed a bit from the old routines that you used to have, also helps you to see that life goes on in everyday ways and becomes a 'new' normal.
  • Although it may seem very difficult at first, remember that things will get easier over time as you come to terms with it all.

Find out about your child's illness and treatment options

Try to find out as much as you can about your child's illness and options for treatment from health professionals.

  • This could include doing a bit of your own research. The more that you know about the illness, the more likely you are to find the best possible care for your child.
  • Ask your health professional where you can get more information, but starting points might include your local library, the internet (make sure it is a site which is a reliable place for information), as well as any local associations for the illness, eg. Diabetes SA.
  • See also the Resources section at the end of this article for further information.
  • Never be afraid to talk with your child's doctor. No question is too small to ask. Sometimes a quick phone call can resolve many hours of unnecessary worry.

Talk openly with siblings about the illness

Make sure that you talk openly with your other children about their brother or sister's illness.

  • Help them to understand what is going on so that they feel included and can help if they want to, while at the same time not taking the responsibility for caring for their sibling.
  • Try to include siblings in hospital visits whenever possible.
  • Allow opportunities for your other children to talk about how the illness is affecting them. Sometimes children think that it is somehow their fault that their brother or sister is sick.
  • It is really important to allow children to talk about their fears and concerns and reassure them that it is not their fault in any way.

Get support from health professionals

If you feel that you are struggling with caring for a chronically ill child and you are stressed, feeling overwhelmed, or not coping, get some professional help.

  • This could be through hospitals, eg. by talking to a hospital social worker, or through your local community health service.
  • If you feel that you need some practical support such as financial support, transport asistance or respite care, ask your health professional for a referral to the appropriate service.
  • Hospital social workers can often give you information on supports that might be available in your local area to help you.
  • Remember, everyone needs help sometimes.

Resources

This list is for people who live in South Australia. However, some of the organisations have branches in other states and territories throughout Australia. Many also have websites where you can find useful information as well as links to other sites. Your health professional may also be able to give you more information about resources in your local area.

Organisations and websites

  • Asthma Foundation of SA 'The Breathe Better Centre'
    300 South Road, Hilton SA 5033
    (08) 8238 9300 or 1800 645 130 (freecall information line)
    http://www.asthmasa.org.au 
    The Asthma Foundation of SA runs information sessions on various topics relating to asthma management, as well as a support group. The website contains information on asthma and links to other sites.
  • Crohn's and Colitis Australia
    http://www.crohnsandcolitis.com.au/
    Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease) affect more than 61,000 Australians. Crohn's and Colitis Australia supports the Crohn's and colitis community with a focus on support programs, including education, advocay, counselling, general awareness, and generating and utilising funds for research. They also provide a support line 1800 138 029.
  • Cystic Fibrosis South Australia
    143 Sturt Street, Adelaide SA 5000
    (08) 8221 5595 or 1800 232 823
    http://www.cysticfibrosis.org.au/sa/
    Cystic Fibrosis South Australia provides services to people living with Cystic Fibrosis and their families. These services include counselling, emergency financial assistance, equipment hire, parent support services (including groups and annual parent retreat), sibling support services (including activities and a camp), as well as supports for those who have been newly diagnosed with cystic fibrosis.
  • Diabetes SA
    159 Sir Donald Bradman Drive, Hilton SA 5033
    (08) 8234 1977
    http://www.diabetessa.com.au
    Diabetes SA provides information, fact sheets, and runs seminars about diabetes. They can also provide medical disposal for used equipment, as well as a number of products for people living with diabetes and their families. Annual camps are run for children, and members are able to access discounts on products and podiatry services. Telephone advice from a Diabetes Nurse Educator is also available. Non members may need to pay a fee for some of these services.
  • Epilepsy Action Australia
    25 Goodenough Street, Mile End SA 5031
    (08) 8234 1444 or 1300 374 537 (Australia wide)
    http://www.epilepsy.org.au
    Epilepsy Action Australia provides advocacy and support services, including telephone advice, home visits, support groups, and health support. They also run seminars and can attend medical appointments with families if requested. The website contains information on epilepsy, links to related sites, as well as an information area for children and adolescents.
  • The Epilepsy Centre (Epilepsy Association of SA & NT Inc)
    266 Port Rd, Hindmarsh SA 5007
    1300 850 081
    http://www.epilepsycentre.org.au/
    The Epilepsy Centre provides information on epilepsy through their website, newsletters, pamphlets, books, and videos. Counselling, support groups (including groups for parents of children with epilepsy), children's camps, carer's retreats, family fun days, as well as a referral service to other support services is offered. The centre also provides advocacy and community education by running seminars for various groups, including schools. The website has information on epilepsy, links to other sites, as well as a children's information area.
  • Juvenile Diabetes Research Foundation Australia
    PO Box 354, Highgate SA 5063
    (08) 8338 3677
    http://www.jdrf.org.au
    Juvenile Diabetes Research Foundation Australia provides children's starter packs (Kidsac) for newly diagnosed children with Type 1 Diabetes, a peer connect support service, youth ambassadors program, and a number of other services for members.

Other useful internet sites: 

*This information on resources and the services provided is current as of February 2010.

Books for Children

There are a number of children's books that can assist you in the process of explaining illness, or the experience of going to hospital, to your child. A few of these books have been listed below but also check your local library, school or preschool library, or bookshop for others that may be suitable for your child's particular situation.

  • Dido has Diabetes by Jill Morris
  • Little Tree: A story for children with serious medical problems by Joyce C. Mills
  • When I go to Hospital by Michael Dugan
  • Hospital by Janine Amos
  • Benjamin goes to Hospital: An introduction to hospital for children and parents by Dr Tony Lipson and the staff of the Royal Alexandra Hospital for Children

References

Isaacs, D., & Sewell, J. R. (2003). Children with chronic conditions. Medical Journal of Australia, 179, 235-236.

University of Michigan Health Systems 2006, Children with chronic conditions.
http://www.med.umich.edu/1libr/yourchild/chronic.htm

Sawyer, M. G., Couper, J. J., James Martin, A., & Declan Kennedy, J. (2003). Chronic illness in adolescents. Medical Journal of Australia, 179, 237.

Kids Health.org 'Caring for a seriously ill child'. 
http://kidshealth.org/parent/system/ill/seriously_ill.html

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The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Parent Helpline on 1300 364 100 (local call cost from anywhere in South Australia).

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