Experiences of young people who care for adults with amyotrophic lateral sclerosis


  • Children and adolescents who care for adult family members with amyotrophic lateral sclerosis (ALS) do so for a large proportion of their day but lack information, guidance and external support networks.

Why this matters

  • Children and adolescents who care for family members with chronic diseases can feel isolated and overlooked by the health care system, leading to emotional distress.

  • Identifying the challenges experienced by young people caring for adults with ALS might help healthcare professionals implement appropriate support strategies that reduce the burden of care provision on young people and improve their quality of life.