Working With Health Aids and In-Home Assistants

Children with spinal muscular atrophy (SMA) face difficulties with daily activities at home and school. They also require around-the-clock monitoring and care to prevent complications. For many children, daily care is managed by their family and a clinic that specializes in SMA.

Most children with SMA need physical assistance to complete routine activities. Proper nutrition, physical therapy, and other treatments may also be part of daily care. Many home modifications and assistive devices can improve care and increase independence for children with SMA. Hiring home care nurses can also help families provide personalized and professional care at home.

How is spinal muscular atrophy managed at home?

Children with SMA need to be regularly monitored at home, especially for breathing and nutritional status. Specialized doctors at a clinic can manage their regular care. They can also help families organize care.1

The goals of at-home SMA management are to reduce symptoms, prevent complications, and improve quality of life. Some examples of daily SMA management at home include:2-4

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  • Physical help with daily activities
  • Physical and speech therapy exercises
  • Breathing support and airway clearance
  • Proper nutrition, possibly through a feeding tube
  • Using braces or devices to correct spine problems
  • Properly giving medicines
  • Monitoring for changes that require emergency attention

What home modifications can help children with SMA?

Most children with SMA need physical help with daily activities at home and school. Depending on other people is a common challenge for children with SMA. This dependence often leads to feelings of guilt. Younger children may feel anxious about the work teachers must do to accommodate their condition and apologize often. Older children and adults can feel as if they need to overachieve at school or work in order to “make up for” needing help from others.5

Modifying your home can help your child with SMA feel more independent. Talk to your healthcare team about how to modify your home. Some examples of changes that have helped people with SMA and muscular dystrophies include:3,6

  • Widening doorways to make it easier to move between rooms in a wheelchair
  • Adjusting bed heights to make it easier to get in from a wheelchair
  • Using adaptive toilet seats, sinks, and other ways to make it easier to go to the bathroom
  • Keeping cups and other commonly used items within reach
  • Adjusting carpets, rugs, and furniture to make it easy to move around and stay active

Assistive equipment may also help improve care and increase independence. Talk to your healthcare team about which devices will help your child. Some examples of assistive devices include:3

  • Pushchairs as a lighter and more portable alternative to wheelchairs
  • Manual or power wheelchairs
  • Cough assist machines
  • Ventilation devices, such as a bilevel positive airway pressure (BiPAP) machine
  • Pulse oximeters
  • Car beds
  • Standers

How can a nurse or health aid help with healthcare at home?

Pediatric home care nurses are experts in providing regular care to children and improving their quality of life at home. They become experts in your child and provide personalized, professional care at home. They can also give you more flexibility to schedule appointments. Some of the ways pediatric nurses help provide care at home include:7

  • Physical help with daily activities
  • Keeping them active and engaged
  • Creating and following care plans that include when to seek emergency care
  • Ensuring proper nutrition
  • Helping with physical and speech therapy exercises
  • Communicating with doctors
  • Properly giving medicines

Many agencies help families find and hire home care nurses. Talk to your doctor for suggestions and advice for choosing a home care nurse. Some questions to think about when you are hiring include:

  • Do they communicate with your child in a compassionate, professional, and patient way?
  • Do they communicate with you and other healthcare workers in an effective way?
  • Do they adjust how they provide care to meet your child’s specific needs?
  • Do they have expertise in SMA?
  • What do other people say about the treatment received from them?
  • Do you and your child feel comfortable around them?

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Written by: Matt Zajac | Last reviewed: August 2021