To get things done, the challenge in everyday life for children with spina bifida- The effects of the quality of performance on autonomy
Författare och institution:
Marie Peny-Dahlstrand (Institutionen för neurovetenskap och fysiologi, sektionen för klinisk neurovetenskap och rehabilitering); Lena Krumlinde-Sundholm (-); Gunilla Gosman-Hedström (Institutionen för neurovetenskap och fysiologi, sektionen för klinisk neurovetenskap och rehabilitering)
Finding our way. RBU international conference on spina bifida ,
Introduction: Delays and limitations in autonomy in daily life have often been reported in children and adolescents with spina bifida and studies of long-term outcome have shown that problems seen in childhood often persist into adulthood. Autonomy is about being the causal agent in one’s own life. Taking care of oneself autonomously requires the ability to make decisions and the successful performance of what one have decided to do. Autonomy in everyday life activities in children and adolescents with spina bifida has been studied in relation to muscle strength and ambulation deficiencies, the severity and type of spina bifida and parental intrusiveness. Despite the knowledge that children with spina bifida often have a cognitive phenotype with problems in executive functioning, no description of the specific performance skills that imply strength or weakness of performance, i.e. description of the quality of the performance, has been available for this group. Nor has any previous study evaluated how the quality of the performance of everyday activities affects autonomy.
Aim: To evaluate the quality of the performance of everyday activities and the perception of autonomy in children with spina bifida and to investigate the how the child’s autonomy relates to the quality of the performance skills.
Methods: 50 children, aged 6-14 (of the 65 in a population-based cohort) with spina bifida were assessed with a direct observational method, the Assessment of Motor and Process Skills (AMPS) in order to evaluate the child’s quality of performance. Both the children and their parents rated the children’s level of autonomy with a Swedish version of the Autonomy Scale. The relationship between the autonomy levels and the child’s age, motor and process ability measures from the AMPS assessment was analysed with binary logistic regression. In addition the agreement between the children’s and the parents’ ratings of autonomy was analysed.
Results: The majority of the children had difficulties performing well-known everyday activities in an effortless, efficient, safe and independent way, demonstrated by low rates of performance skills, (i.e. motor- and process ability measures.) This deficient quality of task performance, in particular the process skills, was strongly related to the child’s level of autonomy in everyday life. The children with spina bifida had low autonomy levels in goal-directed situations that needed personal initiation. The agreement between the parents’ and the children’s ratings of the children’s autonomy level was low.
Conclusions: These studies demonstrates that children with spina bifida often have difficulties getting things done and problems being autonomous due to deficient quality of task performance. It is therefore crucial for to assess, understand and support the development of the performance skills, especially the process skills, in children with spina bifida in order to enhance their autonomy in everyday life.
Ämne (baseras på Högskoleverkets indelning av forskningsämnen):
MEDICIN OCH HÄLSOVETENSKAP ->
Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi
MEDICIN OCH HÄLSOVETENSKAP ->
Annan samhällsvetenskap ->
Övrig annan samhällsvetenskap ->
Autonomy, Child, parent, perfromance skills, spina bifida
Conference website: http://www.rbu.se/findingourway
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