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[Cancer in children with intellectual disabilities: Questioning and ethical issues].

Anne Auvrignon1, Guénola Vialle2, Delphine Gérard3

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This study explores the unique challenges faced by children with intellectual disabilities and their families when diagnosed with cancer. It highlights the profound emotional and ethical considerations of this "double penalty" in pediatric care.

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Area of Science:

  • Pediatric Oncology
  • Bioethics
  • Disability Studies

Background:

  • Children with intellectual disabilities (ID) represent an exceptional population when diagnosed with cancer.
  • Situations involving both ID and cancer in children are rare, with fewer than fifty cases annually in France.
  • The intersection of intellectual disability and cancer in pediatric patients presents unique ethical challenges in care.

Purpose of the Study:

  • To investigate the experiences of children with intellectual disabilities undergoing cancer treatment.
  • To explore the ethical considerations and emotional impact on families and healthcare teams.
  • To understand the journey from birth, disability diagnosis, to cancer diagnosis and treatment.

Main Methods:

  • Qualitative study utilizing semi-directive interviews.
  • Gathered testimonies from five families of children with intellectual disabilities treated for cancer.
  • Interviewed a healthcare team to gain professional perspectives.

Main Results:

  • Each family's journey is unique and offers valuable lessons.
  • Families experience a profound sense of "double penalty," feeling the burden of both disability and cancer.
  • Healthcare professionals question the purpose and ethical implications of care in these complex situations.

Conclusions:

  • The testimonies underscore the ethical complexities in caring for children with both intellectual disabilities and cancer.
  • The concept of a "double penalty" profoundly impacts families and requires sensitive ethical consideration.
  • Ethical principles of care are challenged and require re-evaluation in these extraordinary pediatric cases.