Dataset Information

Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy.

ABSTRACT: BACKGROUND:Standing frames are used for children with cerebral palsy (CP). They may improve body structure and function (e.g., reducing risk of hip subluxation, and improving bladder and bowel function), improving activity (e.g., motor abilities) and participation (e.g., interaction with peers), but there is little evidence that they do. We aimed to identify current UK standing frame practice for children with CP and to understand stakeholder views regarding their clinical benefits and challenges to use. METHOD:Three populations were sampled: 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). Questionnaires were developed by the co-applicant group and piloted with other professionals and parents of children with CP. They were distributed online via clinical and parent networks across the UK. RESULTS:Prescribing practice was consistent, but achieving the prescribed use was not always possible. Respondents in all groups reported the perceived benefits of frames, which include many domains of the International Classification of Functioning Disability and Health for Children and Youth. Challenges of use are related to physical space and child-reported pain. CONCLUSIONS:These survey findings provide information from key stakeholders regarding current UK standing frame practice.

SUBMITTER: Goodwin J

PROVIDER: S-EPMC5811781 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy.

Goodwin J J Colver A A Basu A A Crombie S S Howel D D Parr J R JR McColl E E Kolehmainen N N Roberts A A Lecouturier J J Smith J J Miller K K Cadwgan J J

Child: care, health and development 20170815 2

<h4>Background</h4>Standing frames are used for children with cerebral palsy (CP). They may improve body structure and function (e.g., reducing risk of hip subluxation, and improving bladder and bowel function), improving activity (e.g., motor abilities) and participation (e.g., interaction with peers), but there is little evidence that they do. We aimed to identify current UK standing frame practice for children with CP and to understand stakeholder views regarding their clinical benefits and c ...[more]

PMID: 28809057

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Project description:BackgroundStanding postural sway is often quantified from center of pressure trajectories. During assessments of longer durations, children may fidget, thus limiting the feasibility and validity of sway recordings.Research questionDo postural sway sample durations less than 30 s maintain construct and concurrent validity?MethodsIn this case-control, observational study, we measured postural sway in 41 children (age 5-12 years, 23 typically developing (TD); 18 with spastic cerebral palsy (CP), 13 diplegic and 5 hemiplegic, 11 GMFCS level I and 7 level II) for 30-second eyes-opened and eyes-closed conditions. From a single recording, 5-second incremental durations of 5-30 s were considered in this analysis. We quantified anteroposterior, mediolateral, and transverse-plane sway using seven time-domain variables: root-mean-square error, total excursion, mean frequency, mean distance, sway area, and 95 % confidence circle and ellipse areas. Variables were calculated in eyes-opened and eyes-closed conditions, as well as the ratio of the two. Construct validity was evaluated by the persistence of large effect sizes (Glass's Δ ≥ 0.80) between CP and TD participants at shorter durations than 30 s. Concurrent validity was evaluated by the correlations of shorter duration measures to the 30 s measure.ResultsSeven sway measures had large between-group effects (Glass's Δ ≥ 1.02) for the 30 s measure that persisted (Glass's Δ ≥ 0.81) at shorter durations (5-25 s) and also maintained concurrent validity (r ≥ 0.83). Six of these seven measures were taken in the eyes-closed condition, and all seven measures were in the mediolateral direction or transverse plane.SignificanceOur analysis suggests that sway durations less than 30 s can uphold construct and concurrent validity. These measures were primarily in the eyes-closed conditions and mediolateral direction. These results are a promising indicator that shorter-duration sway measures may be of utility when fidgeting prevents longer recordings.

Project description:ObjectivesA systematic review of paediatric low-risk febrile neutropenia found that outpatient care is safe, with low rates of treatment failure. However, this review, and a subsequent meta-ethnography, suggested that early discharge of these patients may not be acceptable to key stakeholders. This study aimed to explore experiences and perceptions of patients, parents and healthcare professionals involved in paediatric febrile neutropenia care in the UK.SettingThree different centres within the UK, purposively selected from a national survey on the basis of differences in their service structure and febrile neutropenia management.ParticipantsThirty-two participants were included in eight focus group discussions.Primary outcomesExperiences and perceptions of paediatric febrile neutropenia care, including possible future reductions in therapy.ResultsParticipants described a quest for certainty, in which they attempted to balance the uncertainty involved in understanding, expressing and negotiating risk with the illusion of certainty provided by strict protocols. Participants assessed risk using both formal and informal stratification tools, overlaid with emotional reactions to risk and experiences of risk within other situations. The benefits of certainty provided by protocols were counterbalanced by frustration at their strict constraints. The perceived benefits and harms of previous inpatient care informed participants' appraisals of future treatment strategies.ConclusionsThis study highlighted the previously underestimated harms of admission for febrile neutropenia and the paternalistic nature of decision making, along with the frustrations and challenges for all parties involved in febrile neutropenia care. It demonstrates how the same statistics, generated by systematic reviews, can be used by key stakeholders to interpret risk differently, and how families in particular can view the harms of therapeutic options as different from the outcomes used within the literature. It justifies a reassessment of current treatment strategies for these children and further exploration of the potential to introduce shared decision making.

Dataset Information

Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy.

Publications

Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy.

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