Sharing the care: supporting families coping with chronic illness

Parenthood, although rewarding, can be very challenging sometimes and requires hard work. Have you considered though how more challenging it can get when your child is diagnosed with a chronic illness and you have to foster for their every need? This can definitely become really draining and difficult for a parent. A child who is chronically ill has additional specific demands, forming a new “normal” for the family that must be able to face physical challenges, medical needs, emotional needs and deal with the impact that a prolonged illness can have on the entire family. Therefore, everything must change to accommodate the child’s requirements: from daily routines to family dynamics.

While it seems complicated having to explain to a child that they suffer from a serious medical condition that may affect their entire life, it is of vital importance to be honest with your child and communicate clearly their situation. 

Imagine being in a hospital, having to undergo a series of medical tests and examinations, and not knowing why. When the child is aware of what is happening and knows that he or she has the family’s love and support, everything becomes easier. After all, nothing is more frightening than the unknown. 

Naturally, your child will experience an array of emotions with regards to the symptoms caused by the illness.  The parent should always encourage the child to express himself or herself in order to face their fears and deal with their emotions. Sometimes, a discussion is not even necessary. Activities such as listening or dancing to music, drawing, or writing are even more therapeutic than any conversation. Such activities help the child to escape, at least temporarily, to their own fantasy world where illness is not part of it. Also, parents should make sure to help their child understand that the illness is definitely not the result of something they had done but simply a tough situation that they will learn to live with. Even when the child feels occasionally angry about the unfairness of their situation, they should be encouraged to express themselves before comforting them and helping them overcome their frustration.  

What can be really challenging for parents with children dealing with a chronic illness is to set boundaries and still be strict with unacceptable behaviors and occasional tantrums. This is because of the parents’ natural instinct to provide extra love and care to the ill child, sometimes forgetting that all children need limits and rules. Hence, overindulging, albeit helping in the short run, can be very harmful in the long run.  Also vital for maintaining family dynamics, especially when siblings are involved, is that family routines should be kept as much as possible so that the family’s balance is not affected. 

Extended family and good friends are the key to receiving substantial support during difficult times: running certain errands, asking for carpooling, helping with meals are just a few of the things friends and family can help with.  This way, siblings will be able to go to school normally and not feel that their own schedule is completely disrupted.

When parents have to take care of a child with a chronic illness and the extra needs this requires, it is very easy to neglect themselves and gradually leave stress to overtake them. 

There are certain tips, however, that help to ease the strain so that parents are overall happier and more capable of catering for their children. For example, if the child’s treatment process is long and complicated, it often helps to break these needs into more manageable parts.

Also, as difficult as it sounds, not putting your own needs aside is absolutely essential for the parent as an individual and as a couple as well. Try to rest, spend quality time with loved ones, and don’t give up your hobbies. Friends can be the shoulder to lean on when you and your partner are too exhausted to support each other while, if you need professional help or need the support of other parents who deal with similar challenges, you shouldn’t hesitate to seek for it. 

Parents should also bear in mind that there is no shame in asking for financial help for coping with your child’s needs. Finally, never pretend that your problems do not exist otherwise they will ultimately overwhelm you. Keeping a journal might help you to deal with your emotions and look back to see how you overcame past difficult periods.

Ronald McDonald House Charities® has support staff that can help both children and parents with any challenge they are faced with since their mission is “helping families feel at home, even when they can’t be”. At the same time, they provide parents with access to the right resources when they seek specialised medical treatment for their child, in order to make the situation a little easier for families and caregivers.

Having ‘a home away from home’, is vital for both the parents and the hospitalized child, not only because it provides free accommodation close to the hospital but because of the House’s welcoming team and staff who do their best to offer all kinds of support to parents. For this reason, it is impossible not admire all the collective efforts that are made for the realization of this vital project.

If you want to help more families to have access to “a home away from home” and be close to their hospitalized child, you can donate and help RMH Cyprus.  For more information on how you can help, you can contact us via email at or call as at 7000 36 00.