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. 2018 Mar;44(2):203-211.
doi: 10.1111/cch.12540. Epub 2017 Nov 23.

Understanding frames: A qualitative study of young people's experiences of using standing frames as part of postural management for cerebral palsy

J Goodwin  1 , J Lecouturier  1 , S Crombie  2 , J Smith  1 , A Basu  3   4 , A Colver  1 , N Kolehmainen  1   4 , J R Parr  3   4 , D Howel  1 , E McColl  1 , A Roberts  5 , K Miller  5 , J Cadwgan  3   6
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Understanding frames: A qualitative study of young people's experiences of using standing frames as part of postural management for cerebral palsy

J Goodwin et al. Child Care Health Dev. 2018 Mar.

Abstract

Background: Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Although the rationale for standing frame use and the associated challenges have been described, little attention has been given to the users' experiences. The aim of the current study was to explore young people's positive and negative experiences, and attitudes regarding standing frame use.

Methods: Framework analysis informed an open exploration of young people's opinions of standing frames. Using semistructured interviews, 12 young people with cerebral palsy (6 female) were interviewed, providing the data set for transcription and thematic analysis.

Findings: The first theme "attitudes to standing frames" describes the young people's understanding of why they use standing frames. Although standing frames can be painful, some young people believe they should be endured to improve their body structure and function. There were mixed views about the impact standing frames have socially, with some young people feeling excluded from their peers, and others feeling as though standing frames helped them "fit in." Some young people are not offered a choice about how and when they use their standing frame. The second theme "challenges of standing frame use" highlights the issues with standing frame use such as manual handling, interference from siblings, and the lack of aesthetically pleasing standing frame designs.

Conclusions: Young people report benefits related to choice, pain relief, and participation but can also cause pain, discomfort, and reduced independence and participation. Healthcare professionals should have open, informative conversations about potential benefits and challenges of standing frames on all aspects of the young people's lives, including participation and activity.

Keywords: cerebral palsy; child disability; physiotherapy; standing frames.

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