Surveying Parents to Inform Physicians

By Guest Blogger CAC2 Member Patti Gustafson

For years we looked to medical professionals to tell us what we needed to know to treat our son’s medulloblastoma. We trusted them and we followed their advice. Since 2013, we have been working with families who have lost their child to cancer and we’ve focused our attention on post-mortem tissue donation. In 2017, we held an Investigator’s meeting in Chicago to discuss best practices for the collecting, storing, and sharing of tissue. In 2018, we hosted families from across the country for a Family Forum to discuss their experiences with post-mortem tissue donation.  We also developed a written survey for families around this sensitive topic.

Now we’ve been asked, along with Vijay Ramaswamy from Hospital for Sick Children, to write a family consensus paper for Pediatric Blood & Cancer on the family perspective of post-mortem tissue donation. Our chance to tell doctors what THEY need to know! We are excited for this opportunity and want to be sure we include as many voices and experiences as possible.

The aim of the paper is to give clinicians the gentle push they need, to broach the subject of post-mortem tissue donation with families. In our initial survey of 30 families, the consensus is that families WANT to be asked, they find solace in donating and older children find meaning and purpose in helping other children.

To make this a real consensus paper, we need more robust data and we’ve been reaching out to families across the country. We are looking to survey families who have lost a child to brain cancer whether they chose post-mortem donation or not. We need help disseminating this survey so as many families as possible can be heard. If you have suffered the unimaginable loss of a child to brain cancer, or know families who have, please fill out this five-minute survey.  Complete Survey  or share https://forms.gle/7WSTiCQfuN7TeVTs8

We know researchers need tissue to discover why some children succumb to their disease and others survive. New treatments depend on tissue donation. Clinicians need to get comfortable approaching families with this delicate topic. We believe knowing families WANT to give this most precious gift will encourage them to do so.  Families should not carry the burden of discovering ways to aid research. Our hope is that this publication is the beginning of a cultural shift. Currently, 90% of families are not approached by their care team. Yet, 90% of those approached say yes.   We want physicians to know that most families appreciate the information, as difficult as it is to hear.

As an aside, we have started a platform for families to share memories of their child lost to cancer.  I for one relish the chance to talk about my Michael each Monday and want to give other families that opportunity We would love for you to follow Memory Mondays at GiftfromaChild on FB each Monday and share your comments and photos in response. If you would like us to feature your child in a memory, please contact us at . We would love to get to know your children and give you the chance to talk about them.

Patti Gustafson

Patti Gustafson is Michael, Bridget and Ian’s mom and has been fortunate to be married to Al for 30 years. She’s been grateful to live most of her life in Naperville surrounded by her family and life-long friends. Her role at the Swifty Foundation is Chief Operating Officer…. which sounds impressive but really means she pitches in where she is needed!