Self-Care Interventions for Children and Young People With Neurodisabilities: A Mixed Methods Study of Current Therapy Practice in the United Kingdom

Abstract

Background

Self-care is a priority outcome for children and young people with neurodisabilities, their parents and therapists, but there is little evidence about paediatric therapy interventions for children's self-care in the United Kingdom.

Methods

Children with neurodisabilities, parents, therapists and teachers participated in this mixed methods study. Data were collected by interviews and observations of routine therapy appointments. Inductive analysis was used to define aspects of self-care and describe how therapists deliver care to support self-care. The Behaviour Change Technique Taxonomy v1 was used to deductively code the data to identify self-care intervention ingredients and related mechanisms of change.

Results

Sixteen aspects of self-care were described; five were commonly targeted in therapy practice: being safe, dressing, eating and drinking, keeping clean and toileting. Three clusters of intervention techniques describe current practice. Cluster 1 comprises instruction on how to perform the behaviour, behavioural rehearsal and practice, graded tasks and demonstration of the behaviour. These techniques target knowledge, skills and beliefs about capabilities as mechanisms of change to improve self-care. Cluster 2 comprises restructuring the social environment, social support and adding objects to the environment. These techniques target the social and physical environment as mechanisms of change. Cluster 3 comprises reducing negative emotions, information about emotional consequences, monitoring of emotional consequences and exposure. Although not commonly used, these techniques target children's and young people's emotions. Children and young people's autonomy as a central concept in self-care is supported in relation to selecting therapy goals and outcomes of therapy.

Conclusions

A clear description of current therapy practice is provided for comparison against new or alternative interventions for self-care. The most common technique involves instructing how to perform specific behaviours, with methods like behavioural rehearsal and graded tasks aiding in acquiring knowledge, skills and beliefs about capabilities. Additionally, interventions focus on modifying the environment through social influences and resources and addressing children's and young people's emotions.