Wednesday May 21, 2014

A positive relationship between a child’s parents and medical team is vital to ensure the seriously ill child and their family receives best possible care and has peace of mind throughout treatment and beyond.

Increasingly complex health care systems and treatment options demand that parents take charge of their child’s care. Information readily available online and in the media can equip parents to be more informed and actively engaged in their child’s care than ever before.  However, much of this information is incomplete or inaccurate.  Particularly in relation to eye salvage therapies for retinoblastoma, this often creates confusion and unrealistic, even dangerous expectations of what treatment can achieve, and can negatively impact the parent-doctor relationship.  Ultimately, this risks parents and doctors making poor decisions that are not in the best interests of the child.

Children with retinoblastoma experience months or years of treatment and follow up care.  Parents will be expected to arrange medical tests with different departments and ensure your child attends all appointments.  Parents will give medications, prepare and support your child through countless EUAs and other procedures, and even do certain procedures.  They need to be constantly vigilant about treatment side effects, and help the child cope with all the effects of their cancer.

Open two-way communication is critical to a good relationship that keeps the child at the heart of all care decisions.  Parents should never feel intimidated to talk with doctors, discus treatment options, ask questions, express concerns about any aspect of the child’s care.  A good doctor who puts the child first will always welcome open dialogue.  All parties should be open to hearing what the other has to say.  If parent or doctor is not willing to have open and honest dialogue, the child may not receive appropriate care.

To ensure a child has the best care and highest possible quality of life during treatment and beyond, the child’s parents, doctors, nurses and therapists will need a good working partnership.  This therapeutic alliance requires open communication, trust, respect, patience and care, as well as knowledge and skills to provide high quality medical care.

Yet the stress of parenting and looking after a seriously ill child can strain communication with the medical care team, and there may be little time in consultations for parents to share questions, concerns and feel confident they are being heard.

Parents and the medical care team can build an effective child-focused partnership by following the guidance on our website about forming an effective therapeutic relationship:

Choosing your child’s doctors
Your child will be treated by an ophthalmologist (eye doctor) and oncologist (cancer doctor) who will work together to plan and deliver treatment.

Good Communication
Doctors must give clear explanations and listen fully to your concerns.  You must feel confident about asking questions and sharing your concerns.

Conflict Resolution
Conflict with doctors or nurses is almost inevitable at some point.  Settling disagreements quickly is imperative for your sanity and your child’s wellbeing.

Second Opinions
A second opinion can help if you are unsure about proposed treatment or the doctor’s ability to treat your child, or if previous treatments have failed.

Changing Doctors
Changing doctors is a big step, as continuity of care is essential in cancer treatment.  However, it can become necessary for some families.

Medical Staff Explained
The roles and responsibilities of doctors and nurses can be confusing, especially in the early days when you are overwhelmed with the experience.

In child centred care, parents are an integral part of the multidisciplinary care team, which also includes ophthalomologist, oncologist, nurse specialists, social worker, child life specialist and others