INFORMED PARENTS ARE CONFIDENT ABOUT TREATMENT DECISIONS

Parents of children with SMA face difficult decisions regarding their child's treatment. A survey of parents of children with SMA conducted in Sweden in 2013 shows that if parents are informed before treatment decisions are taken, they feel confident about these decisions.

This study of parents of children with severe SMA investigated how well informed they were before treatment decisions were made and how involved they were in making decisions about their child's treatment. Sixty-one parents of 36 children, non-sitters (Type 1) and sitters (Type 2), for whom respiratory support was considered during the first year of life, took part in a questionnaire survey.

Parents were asked to describe their overall experience of their child's care and about the information they were given and how treatment decisions were made. The questionnaire consisted of two parts: part one focused on the information provided at diagnosis and during treatment while part two focused on how parents perceived their role in decision-making, particularly about respiratory support, and their views about the care received.

Children received either no respiratory support, non-invasive ventilation with a mask or supplementary oxygen via the nostrils or with a mask. All parents reported that they were informed about treatment decisions by their healthcare professionals before decisions were made. The majority of parents (80%) felt confident about the decisions and 79% felt that discussions regarding treatment had been carried out in a considerate manner.

Further results from this study are:

• About one-third of parents (36%) felt that information about SMA had been given in an inconsiderate way, either often or occasionally.
• The majority (82%) were given information that helped them to understand what SMA is.
• Approximately two-thirds of parents (69%) were given information about treatment options and 69% also felt that they could understand the implications of the different options for their child and the family.
• However, sixteen parents (26%) received no information about respiratory support.

This study shows the importance of parents being fully informed so they can understand the treatment options that are available for their child, particularly relating to respiratory support, and the implications of these options for the child and the family.