A new documentary, Parenting a Child with Life-Limiting Illness, is sure to resonate with parents of children with rare and genetic disease.

On Thursday, June 27th the film screening will take place at Genzyme Center in Cambridge, MA

This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly diagnosed families experience and to give them genuine hope that they will survive. The parents featured are coping with the devastating diagnosis of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1, but the issues they discuss are universal to any life-limiting illness.

Their comments are deeply personal, unaffected, insightful and courageous as they share the intimate story of how they coped with their child’s life-limiting diagnosis, tend their marriage, care for their other children, involve friends, engage palliative and hospice care and make difficult care choices. Even as the perspectives are varied, two themes are common throughout: the importance of connecting with other families and their certainty as parents of their ability to love and care for their children through the entirety of their lives.

It is this intimate portrait of family experiences, emotions and needs that also make this video valuable as an education tool for providers who support these families, including pediatricians and palliative care doctors. An accompanying guide includes discussion topics for using the video in a professional development setting.

NTSAD is deeply grateful to Genzyme, a Sanofi Company, for the generous Patient Advocacy Leadership Awards Innovation Grant to support this project.

______________________________________________________________

The Global Genes Project was able to catch up with Producer and NTSAD Board Member, Blyth Lord, regarding the film.

GG: Tell us a bit about the premise of this film. For what purpose was it created?

Blyth Lord: For each of the more than 500,000 children with a life-limiting illness—including those with rare diseases for which there is no treatment—there are parents and families who are coping while ‘living a loss’ every day. Parents typically feel isolated, dealing with the issues and worries unique to their situation, while health care providers may feel inadequately trained in palliative and end-of-life care and uncertain how best to support these families.

Caring for a child with a life-limiting condition necessitates looking beyond the disease and understanding the context and needs of the whole family. Parents do not typically get to meet other families like them, and hospital settings and doctor visits do not afford providers with a full view of parents’ reality at home or their spectrum of thinking.

With funding from Genzyme, National Tay-Sachs and Allied Disease (NTSAD) produced the film in response to these needs, as an effort to lessen the isolation that parents feel and to deepen the understanding that providers have of the family perspective so as to improve the quality of care they deliver. The DVD contains two versions for its two intended audiences: a 44:00 version for families and a slightly edited 35:00 version for providers.

GG: What are you hoping families will take away from this film?

Lord: This film features five couples speaking frankly and courageously from the intimacy of their homes, discussing topics extending far beyond the specifics of their child’s diagnosis. These include:

  • Coping with the Diagnosis
  • Finding Support
  • Caring for Siblings
  • Working
  • Tending the Marriage
  • Involving Family and Friends
  • Finding a Philosophy of Care
  • Understanding Palliative and Hospice Care
  • Making Decisions about Feeding Tubes
  • Transitioning to the End of Life

It is our hope that the film serves as a one-directional, virtual support group of sorts— that parents watching the film will hear their own issues and feelings reflected in these interviews and take from these connections a sense that they are not alone and that they too can cope, care and survive.

Blyth&CameronJO

Blyth and daughter, Cameron, who passed from Tay-Sachs twelve years ago.

We also hope parents come away with an understanding that palliative medicine provides an extra layer of psychological, emotional and spiritual support for the whole family, and that they seek palliative care support to help them provide the best quality of life for their child.Finally, we hope that parents see that there are no right or wrong choices and that they have the courage to make the choices that are best for their child’s life and, when it is time, death.

GG: What are you hoping that professionals, such a doctors and caretakers can get out of this film?

Lord: For professionals, the film provides a unique opportunity to hear parents speak frankly about intimate issues and to deepen their understanding of the thoughts, fears, needs and realities of parents caring for children with a lifespan-limiting diagnosis. We hope it increases providers’ understanding of the impact a diagnosis has on a family, of how couples can respond to the diagnosis, of how parents seek out their ‘philosophy of care’ for their child, and of how palliative medicine can support families find the philosophy that works best for them.

Towards this end, the guide accompanying the film includes discussion questions for use in a professional development setting. These questions were developed by palliative care doctors at Massachusetts General Hospital for Children.

GG: Where can parents and patients get a hold of this film? And when?

Lord: A short trailer can be watched at https://www.youtube.com/user/ntsad.

The DVD and guide can be ordered from NTSAD. There is no cost for affected families; $30 for professionals. The guide includes suggested discussion topics for professional audience.

Learn more at https://www.ntsad.org/index.php/infantile-a-juvenile-support/parenting-children-with-life-limiting-illness.

X