PALLIATIVE JOURNEY
"When our oncologist broached the idea of palliative care, she pointed out that it was not an admission of defeat against Sylvie’s disease. The care would step in and help as necessary, and step out when no longer needed. Even so, at the time we thought that it was the beginning of the end. Our perspective has changed since then."
DIAGNOSIS AND PROGNOSIS
Being given the news that your child has been diagnosed with a serious illness and requires palliative care can be overwhelming. As a parent you have to adapt to the fact that your child may not reach adulthood or it maybe that your child is born with a life threatening or life shortening illness meaning they need immediate palliative care. In some cases parents will not have a specific diagnosis for their child just the knowledge that their child is seriously ill and will benefit from palliative care. This can be even more distressing since a full understanding of why their child has become ill may not be available.
This part of the website has a number of resources and guides for coming to terms with and understanding your child’s diagnosis and prognosis and talking to your child about what this means.
When a child is sick everyone in the family is affected. Receiving the news that your child has a life limiting illness is devastating. Nothing and no one can prepare you for it. You may be confronted with a diagnosis that is unfamiliar to you. A condition you have never heard of before.
There may be unanswered questions concerning your child’s condition and prognosis. After learning that your child may not reach adulthood, it is not unusual to worry about the present and the future. Your family life is turned upside down. Many parents don’t know where to start emotionally or practically. It is an immense challenge for the whole family.
Diagnosis may well be a watershed between two different life styles-the pre diagnostic life with normal ups and downs and post diagnostic life. Parents feel that their future is unknown and everything is at the mercy of their child’s illness. The situation may render them confused and anxious, feelings of shock, denial, anger, guilt, helplessness and a sense of feeling isolated is compounded with the fear of the unknown. Not only do parents have to cope with a diagnosis, it is often difficult to then accept that this condition can cause their child to die in childhood or early adulthood. For some families a prognosis can be uncertain.
Certain conditions can be diagnosed as early as in-utero or shortly after a baby is born. Others discover their child has a serious illness as various symptoms become apparent. However, it is not uncommon that this type of devastating news can be completely out of the blue during a routine health check. Even some children having gone through numerous investigations may not have been given a specific name for their condition. It is not uncommon to remain undiagnosed as there are so many rare and complex childhood conditions.
How a family deals with the news will vary greatly and is completely unique to that family. It is important that whoever is giving the news takes time to ensure that the family understands what their child’s condition means and its implications for the future. It is extremely difficult to process information when dealing with the shock of a complicated medical condition. It is important to write things down and ask questions repeatedly. This will be ongoing.
Understanding what is happening and what support is now available to you will help you come to terms with the changes to your family life and plan for the future. This is vital. Health professionals looking after children with life limiting conditions are aware of the challenges (practical and emotional aspects) and pressures (financial and levels of support) families face. It is important for health professionals working with you to respect the individual needs of your family. They are there to help you. Knowing that you are not alone in your struggle aims to relieve some stress.
The diagnosis of a life limiting illness can be overwhelming. Dealing with the fact that your child will not live the life you had planned for them is devastating, not only for you but also for your family and friends. They can be unsure of what to say and may feel uncomfortable because they do not know what to do. People will want to help you (not cause upset) but won’t know how. Help them to help you.
Learning to cope is a process in which parents find themselves constantly adjusting to the new demands of their child’s illness. It is important for parents to maintain their sense of control and empowerment, whilst the family can begin to cope. The overall goal is to help the child and family to have the physical, emotional and mental strength to carry on with daily life and to ensure the best quality of life for the child and also their family.
Written by Hilary Noonan, 2014
Resources
This part of the website contains links to some uselful downloads which provide very broad information and advice on adapting to your child’s illness. There are also documents on talking to your child about their illness and talking to other family members about your child.
Here you will find a number of useful links to organisations which deal with a specific illness such as Cancer or Heart Defects in the Republic of Ireland and Northern Ireland. We also provides links to international organisations which will help further your understanding of your childs illness. There is also a section for undiagnosed children and links to services that work in this area.
Links to organisations that work in palliative care
Here you will find a number of useful links to organisations that work very generally in children’s palliative care. These services range from support services, to care services to bereavement services.
– Links Northern Ireland
– Links Republic of Ireland
