“It gave me a sense of control in a treatment where I felt I had none”: the use of social stories and preferences to reduce the use of restraint during nasogastric tube feeding in young people with anorexia nervosa

Objective

Nasogastric tube (NGT) feeding can be used in inpatient care, and in certain incidences is necessary under physical restraint. While at times essential, it is highly distressing and a high proportion of young people who receive NGT feeding under restraint may be Autistic. This service evaluation explored patient and staff perspectives of autism-affirming resources, including social stories and an individual preference sheet, embedded in a larger quality improvement (QI) project to reduce NGT feeding under restraint.

Methods

Nine young people who had received NGT feeding and eleven inpatient staff provided Likert-scale ratings and/or descriptive feedback on whether the resource was helpful and reduced distress. QI data on the frequency of NGT feeding under restraint was analysed using run charts.

Results

Five out of nine young people reported the social stories were helpful, or would have been when they first received NGT feeding. Five out of six clinicians who had used them stated they had reduced distress. All staff and young people who had used the NGT preference sheet to support collaborative care planning (including strategies to reduce sensory overwhelm) found it helpful. These findings were embedded in a larger QI project which saw a reduction in NGT feeding under restraint from a median of 20 to 1.5 a week over one year.

Discussion

The use of social stories and a preference sheet to support collaborative care planning for NGT feeding appears to be acceptable to young people and inpatient staff. These resources could form part of a range of autism- affirming adaptations to treatment with the aim of improving treatment experience and reducing restrictive practice.