Care and Support

Once your child has been diagnosed with a life-threatening or life-limiting condition and has undergone either curative treatments for the condition or a decision has been made just to manage the symptoms and pain, it is important that the needs of the affected child, and those of your whole family, continue to be assessed on a regular basis.

Children who are in a stable condition may be discharged from hospital, either back home or to another health care facility. This can be a relatively stable period in the care of your child that may only require routine follow-up visits to your doctor or primary caregiver. It is very important that you monitor your child’s condition closely and that any changes are reported during your visits and check-ups. It is also important that you discuss any practical issues and equipment that you may require to help improve the quality of care for your child. During this time, you may find that you will strive to become increasingly more knowledgeable about your child’s condition and their day-to-day care requirements.

In addition to managing the treatments and/or symptom control for the illness, the developmental needs of the child also need to be met. This may require additional support and care from other healthcare practitioners such as Occupational Therapists, Physiotherapists, Speech Therapists, etc. At this stage, your child may interact with a variety of health care professionals, and as a parent, it can be challenging keeping up to date with the various appointments, the names of the health care professionals and the exercises that you may be required to do with your child. Don’t be afraid to voice your concerns if you feel that you and your child are being stretched to the limit.

Whenever possible and where their condition allows, children should be given the opportunity to attend school. This may require special arrangements to be made that might have to be funded by the parents.

If you child remains in a state health care facility, he or she will receive care and support in the wards. As a parent, you need to insist on your right to be regularly informed about your child’s condition and the treatment and care he or she may be receiving. It is therefore important to meet regularly with at least one consistent health care professional looking after your child in order to keep up to date on the various treatments and care being provided and, where possible, to do the exercises and activities with your child when you spend time with them. Remember to monitor and report any changes you may notice in their condition.

During this period, a “new” normal may become established where the family gets over the initial shock of the diagnosis and the management of the illness becomes part of your everyday lives. It is important that a sense of “normality” and routine returns to the family.

This is also a challenging period in which demands other than that of the sick child may also need to be met. For example, bayou may have work commitments, financial strain due to increased expenses, marital strain, and your other children who need care and support, etc. It can be a very stressful time and therefore it is important that as a parent, you try to manage the stress as much as possible, and take time to look after yourself.

There are several parent support groups for various conditions that you may wish to contact at this time. Some people prefer to meet face-to-face with other parents; others prefer to chat online through online forums or Facebook. Others may prefer private correspond via emails and some will receive support from their religious institutions. You need to find the right type of support or combination of support groups that will best meet your needs.

PatchSA will do our best to assist you or put you in touch with a support group or organisation that may be best able to help you.

If you have any comments or questions that you would like one of our experts from the network to respond to, please send an email to info@patchsa.org