Is autonomy related to the quality of performance of everyday activities in children with spina bifida?

Abstract

Purpose: To investigate the relationship between the level of autonomy and the quality of performance of everyday activities in a population-based cohort of children with spina bifida and to study the agreement between the children’s and the parents’ ratings of autonomy. Methods: 50 dyads of children (aged 6–14) with spina bifida and their parents rated the children’s level of autonomy with an adapted, Swedish version of the Autonomy Scale from the Arc’s Self-Determination Scale. Each child’s quality of performance of everyday activities was assessed with the Assessment of Motor and Process Skills (AMPS). Results: The autonomy levels of the children with spina bifida were rated to be lowest in daily routines and highest in leisure activities. Binary logistic regression analyses revealed that age, motor skills and process skills were all significantly related to the autonomy level, but that process skills appeared to predominate in this respect. Concerning the perception of the autonomy level, little agreement was found between each child and his/her parent. Conclusions: It is important to understand and support the development of process skills as expressed in task performance in children with spina bifida and to pay attention to both the parent’s and the child’s opinion when setting goals and plans for interventions.

Implications for Rehabilitation

• Autonomy is vital for independence and participation in life situations and has been found to be at a low level in goal-related activities in children with spina bifida.

• This population-based study found that the level of autonomy was strongly related to the quality of performance and in particular to process skills as measured with the instrument Assessment of Motor and Process Skills (AMPS).

• It is crucial to assess and support the development of process skills, as expressed in task performance, in children with spina bifida, as well as to discuss and support issues of autonomy.

• This study showed that the children with spina bifida and their parents had different perceptions of the child’s level of autonomy, which indicates that both these opinions have to be taken into consideration when planning interventions.

Keywords::

• Autonomy
• child
• parent
• performance skills
• spina bifida

Acknowledgement

We would like to thank the children and families who participated in this study. We are also grateful for the assistance from the staff of the Urotherapeutic Unit at the Regional Rehabilitation Centre, the Queen Silvia Children’s Hospital, Gothenburg, Sweden.

Declaration of interest: This study was supported financially by the Norrbacka-Eugenia foundation, the Petter Silvferskiöld Memorial Fund, the Research and Development Council of the Västra Götaland Region Committee for Mental and Physical Disabilities, the RBU Research Foundation, the Mayflower Charity Foundation for Children and the Centre for Health Care Sciences at Karolinska Institutet and the Strategic Research Programme in Care Sciences.