You are the most important part of your child’s hospital experience. When you are calm, your child will be calmer.
There are many things to consider when your child is hospitalized for cancer care: how to get there, where to stay, what to eat, how to be a good advocate, and learning to cope with long periods of inactivity.
When you are prepared for hospital life, you will be calmer and more able to support your child. You will also be a more confident and effective advocate.
Where to Stay
Many hospitals provide beds for parents to stay with their child overnight. However, your child may need outpatient care far from home, or you may value privacy during an extended hospitalization.
Hospitals often have houses close by that provide a welcome homely environment for out-of-town families. Many have arranged discounted patient rates with local hotels. Ask your child’s nurse or hospital social worker what is available.
If there is no affordable housing, ask your child’s nurse or social worker for help in finding a solution. Many organizations provide shelter for families in need.
Ask the hospital in advance for directions by road and public transport. Ask about short and long term parking options, including costs and patient discounts.
Ask other parents where cheap parking is located. Ask the social worker if you qualify for reimbursement of travel costs, or for a grant to help with costs.
In some countries, non-profit organizations provide free or reduced cost travel by train, coach and flight for families travelling to hospital for their child’s cancer care. Ask the social worker about programs in your region.
While hospitals provide meals for inpatient children, parents often are not catered for. Buying food at the hospital can be expensive and is usually not very healthy as a regular option.
Ask in advance if your child’s ward has a kitchen and fridge for family use. Check space restrictions and infection control policies.
Bring packed dishes from home, labeled with your name and the date it was packed (important for infection control). Ask friends and relatives to bring more pre-packed meals when they visit.
Family housing facilities usually have kitchens where parents can prepare their own meals. Community groups often support families at the house by providing healthy home-cooked meals or groceries the family can use.
A Therapeutic Alliance
A positive relationship with the medical team will ensure your child receives best possible care during her hospital stay. This requires good communication, mutual trust and respect, diplomacy and patience. as well as knowledge and skills to provide high quality medical care.
You will interact with many people during your child’s hospital stay: doctors, nurses, child life specialists, technicians, social workers, administrators, cleaners and others. Most will be dedicated, caring individuals.
Some will be more difficult to work with and a few may greatly stretch your patience. Be aware that your tolerance for these testing situations will likely be lower than normal.
The nurses are your best allies when your child is inpatient. Do all you can to build a positive relationship with them. They will value your help with personal care as this frees them to focus on medical care. They will usually become good advocates for you and your child if you need help.
For more guidance on forming a therapeutic alliance, click here.
Learn to Be Patient
Waiting is a common hospital pastime that you will quickly learn to accept as normal. You will experience long waits for many tests, procedures, treatments, consultations and even discharge. These can be very trying, especially when you are waiting for test results, or have questions.
Try to accept these times rather than fighting against them. Pack some favourite quiet toys for your child and a book for you. Bring snacks, but be mindful of children fasting for anaesthetic.