Advocacy: Helping Others Understand What Children with Cancer Need

Individual advocacy

Always expressing my thoughts and feelings to everyone who is involved in any type of care that is provided to my child

Never settling

Putting your own needs aside to aid in the care of another

Fighting to make life better for someone

Making sure the child is heard

Taking a stand

Speaking up and ensuring that your child is getting the best medical care possible

Fighting for what is needed

Being the voice for my child

Helping others to help themselves

Others thought of advocacy on a larger scale (Table 24.2).

Table 24.2
Parent comments gathered from Facebook survey conducted by the American Childhood Cancer Organization in October 2014

Cause advocacy

To take on and believe in a cause

Fighting every day to help all kids with cancer because they can’t help themselves

Being strong not only for those who cannot be, but also for those who just don’t know how

Stepping up and taking action

Standing strong and realizing you do have the power to change hearts and lives

Making enough noise so that children diagnosed with cancer have a better chance

Working together as a community to see change for children with cancer

Being relentless

Having a national conversation to evoke meaningful change

Finding better treatments and cures

Parents as Advocates

Advocacy is being able to have your child’s wishes realized, being able to find someone to answer their questions truthfully, making sure their treatment is handled respectfully and privately, making sure that the child is comfortable at all times, making sure that the care team is all on the same page. – parent of a teen boy who died of brain cancer

When a child is diagnosed with cancer, parents or guardians may be thrust into the role of advocate for their child for the very first time in their lives. While a parent may not have previously questioned their child’s physicians, following a cancer diagnosis when their child’s life could be in danger, they may feel compelled to question treatment decisions. Parental advocacy comes in many forms: quiet, firm, loud, crass, respectful, and even rude. Pediatric clinicians can choose to view a parent who advocates for a child as an annoyance or a challenge, or they can recognize that the child’s cancer diagnosis is almost certainly the most difficult thing the family has ever faced and assume that most parents want what is best for their children, whether it be a second opinion, good quality of life, or a comfortable death. Physicians and psychosocial professionals have the extraordinary opportunity to work with parents to ensure the provision of the best medical and psychosocial care for children with cancer.

Listening to Children: Valuing their Perspective

Advocacy is finding the best words you can to help others understand what is needed. – mother of a child with cancer

Andrea Román’s son Riley was diagnosed with cancer at the age of seven. In an October 2014 interview, Andrea revealed that she and Riley worked together to encourage each other in their efforts to advocate for what he needed during his treatment for cancer. Andrea reminded physicians and nurses, “No one knows what Riley’s going through better than Riley does!” And if Riley felt that someone was dismissing his mother’s concerns, he reminded them, “Well, that’s my mom, and she’s known me all my life; so if you don’t believe me, believe her.”

When doctors, nurses, or other professionals asked Andrea questions, she often turned to her son to give him the opportunity to respond. Riley advocated for his own comfort and safety by telling his nurses what worked well for him when they accessed his port. He said that if they counted to three, he was better able to prepare for the poke. If the nurse did not give him a mask, he requested a mask to protect the port site from germs. If a nurse did something that caused more pain than usual, Riley explained the way other nurses had accessed his port successfully, and with less pain, in the past. Similarly, when Riley’s medical team felt that he needed a feeding tube, Andrea encouraged Riley to learn about the options. After a couple of outpatient teaching appointments, along with some videos about G-tube surgery and NG-tube placement, Riley eventually chose to try an NG-tube, and he requested to place it himself. Though it was not a request the staff had received in the past, they allowed Riley to place the tube with their guidance, and he was able to place it correctly.

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Oct 31, 2016 | Posted by in PEDIATRICS | Comments Off on Advocacy: Helping Others Understand What Children with Cancer Need
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