Aims Standing frames are widely used as part of postural management. They may improve body structure and function, activity, and participation, but there is little evidence that they do. ‘Understanding Frames’ is a study evaluating the acceptability and feasibility of a future trial to determine the efficacy of standing frames for children and young people (CYP) with cerebral palsy. It provides insight into the practicalities of generating evidence for interventions that are used routinely in disabled children with multiple needs.
Method This is an ongoing sequential mixed-methods study. The first stage was a survey of current UK practice. Questionnaires were completed by three groups: clinicians prescribing standing frames for children with CP (n=305), professionals (health and education) working with children with CP who use standing frames (n=155), and parents of children with CP who have used standing frames (n=91). Then, a series of focus groups were conducted to examine various stakeholders’ perceptions of the feasibility and acceptability of a standing frames trial. Participants included physiotherapists, clinicians, parents, and educational professionals. Interviews were held with twelve CYP who use standing frames.
Results Questionnaire respondents suggested that standing frames improve body structure and function (e.g. reducing risk of hip subluxation), activity (e.g. motor abilities), and participation (e.g. peer interaction). However, there are many challenges associated with their use including physical space and the child’s choice. This qualitative analysis has revealed rich insight into the perceptions of various stakeholders, including CYP. In particular, a focus group of paediatricians and orthopaedic surgeons revealed the ethical entanglement of a) withdrawing treatment that has potential benefit as part of a research trial; and b) continuing the same treatments without good quality evidence for their use. CYP reported commitment to an intervention in their daily life; which may be challenging, but may improve long term outcome.
Conclusions Understanding Frames continues to provide essential information about trial design for complex interventions, using standing frames for postural management of CYP with cerebral palsy, as an exemplar. The final stage of Understanding Frames is to complete a second survey of key stakeholders regarding the feasibility of specific trial designs.
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