Abstract
The aim of this study was to determine what kind of assistance mothers would like from health care professionals when deciding to have their homebound patients with severe motor and intellectual disability (SMID) undergo a medical procedure (i.e., creation of a tracheostomy or gastrostomy and starting of mechanical ventilation). A focus group interview was conducted with six mothers of patients with SMID who had previously decided to have their child undergo a medical procedure or were currently planning for their child to have such a procedure. It was found that when making their decision, mothers needed “to be provided with a person they could consult or a place to go for consultation.” They suggested a home health nurse, a peer supporter, or a doctor with a second opinion as people who could support their decision, and want their health care providers to assist them in this effort. They also wanted a study session about the medical procedure to be held for them and the rest of their family.
