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.

variable support that may enable movement of the head, upper body, and upper limbs, thus potentially improving their function and participation. For the lower limbs, standing is usually passive (i.e., continuous, and stationary loading) but can be dynamic (i.e., simulating the forces applied during natural walking).
In keeping with the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY;World Health Organization, 2007), the revised definition of CP (Rosenbaum et al., 2007) recognizes the importance of activity and participation, beyond purely body structure and function, for children with CP. Potential benefits of standing frame use relate to all aspects of the ICF-CY framework.
Regarding body structure and function, standing frames may reduce the risk of joint contractures, hip dysplasia, and scoliosis; improve BMD and gastrointestinal, bowel, and respiratory function; and reduce pain.
Considering activity and participation, standing frames may enhance ability to stand independently, transfer, use one 0 s upper body in play, and increase social and communicative participation. The use of standing frames may be more beneficial or challenging in different environments.
Standing frames may also have disadvantages. Children report pain and discomfort; families report increased demands on their time, reducing family and child participation (Bush et al., 2010). A practical issue is that frames are large and require storage. Further, education staff have described practical difficulties in using frames (Hutton and Coxon, 2011). Standing frames are expensive (typically costing £800 to £2,500) and require adaptation or replacement as a child grows. Frames require considerable therapist time to prescribe and monitor use.
Despite these, standing frames are part of accepted practice in the UK in children with CP GMFCS IV and V. Professionals have opinions informed by clinical experience; however, there is little research evidence to confirm whether standing frames are beneficial or cause harm.
Recent systematic reviews (Bush et al., 2010;Fehlings et al., 2012;Paleg, Smith, and Glickman, 2013) have demonstrated limited and conflicting evidence for their benefit with respect to body structure and function. Although the most recent review (Paleg, Smith, and Glickman, 2013) claimed a positive effect on BMD, hip stability, and range of movement at the hip, knee, and ankle with variable duration of standing frame use, Fehlings et al. (2012) found no such evidence. A consensus statement acknowledged the limited evidence (Gericke, 2006) but still recommended that standing frames be used from age 12 months in children with CP and GMFCS IV and V (Gericke, 2006).
Clearly, there remains a research gap in terms of the value of standing frames throughout childhood (Ben-Shlomo and Kuh, 2002). Therefore, we aimed to survey current UK standing frame practice and determine various stakeholders 0 perceptions of the benefits and challenges of standing frame use.

| Participants
Three populations in the UK were sampled for this study: i) Prescribing clinicians: Professionals such as physiotherapists prescribing standing frames for children with CP, n = 305.
ii) Nonprescribing professionals: Professionals such as paediatricians, orthopaedic surgeons, physiotherapists, and education staff who do not prescribe standing frames but work with children with CP who use them, n = 155.
iii) Parents: Parents or carers of children with CP who currently use or have used a standing frame, n = 91. Figure S1 indicates participant flow through the study from responses received to responses included in the final analysis.

| Measure
A questionnaire was devised following a literature review, and consultation with parents and child health professionals. Although all versions explored similar concepts, separate versions of the questionnaire were designed for the three participant populations to ensure the questions were relevant and used appropriate language.
The questions included the demographic characteristics of respondents and their experience and use of standing frames, the indications for prescription of standing frames, frame choice and prescribing practice, perceived benefits and difficulties associated with frame use, and differences between prescribed and actual use. Most questions offered fixedchoice responses, though there were some opportunities for free-text. • Professionals and parents of children with cerebral palsy are invested in using standing frames. They report a variety of benefits; however, they also recognize many challenges associated with standing frame use.

| Procedure
• Prescribing practice is consistent across the UK, but achieving the prescribed use is not always possible due to resources, environment, and child and family factors. parent groups such as the Peninsula Cerebra Research Unit for Childhood Disability Research. In addition, social media were used to allow those interested to link to the study website (https://research.ncl.ac. uk/understandingframes/) via relevant Facebook pages (e.g., Cerebra) and the study 0 s Twitter feed (@UnderstandFrame). A £10 voucher was offered to all who completed the questionnaire.

| Analysis
Data analysis was descriptive, largely reporting percentages of respondents in each category for each question. Table 1 outlines the respondent characteristics. Most prescribing clinicians and a large number of nonprescribing professionals were physiotherapists working in community settings. The majority had more than 10 years 0 experience and used a variety of standing frame types. Sixtyfive percent of parents had children who used only one type of standing frame that was assessed, fitted, and monitored by a physiotherapist. Missing 12 (3.9) 9 (5.8)

| Participants
Note. a Percentages add up to greater than 100% because participants could choose more than one option.
b Although there is evidence that parents can accurately assess their child 0 s Gross Motor Function Classification System (GMFCS) level (Morris, Galuppi, and Rosenbaum, 2004), feedback from parents during our preliminary engagement work indicated they did not want to be asked to categorize their child in this way. Therefore, we estimated the GMFCS level from reported information about independent walking, use of mobility aids, weight bearing, and maintenance of head position.
Children of the parent-respondents were aged 1-18 years (median 10 years 6 months). They began standing frame use at 1-11 years (median 3 years) and stopped use at 3-16 years (median 9 years 7 months). Waiting times to receive a standing frame once recommended ranged between "less than 4 weeks" and "more than 26 weeks." 3.2 | Prescribing practice and actual use of standing frames Standing frame recommendations and prescriptions for use were primarily based on clinical experience rather than on national or local guidance, as reported by both nonprescribing professionals and prescribing clinicians (81% and 89%, respectively).
Eighty-two percent of prescribing clinicians suggested that standing frames should be used daily; however, only 18% of parents reported that this was achieved. Further, 76% of prescribers recommended the duration of standing should be 30-60 min, yet only 52% of parents reported this duration of use, with longer or shorter periods of use reported by 24% and 12% of participants, respectively (see Table 2).
The majority of prescribing clinicians suggested that standing frame use should be monitored and reviewed by the prescriber every 3 months or more often, but parents reported that monitoring and reviewing usually occurred every 3 months or less in practice.

| Reasons for use, and perceived benefits and difficulties associated with standing frames
The prescribing clinicians and nonprescribing professionals who responded to the question about reasons for standing frame use in children with CP GMFCS IV and V consistently reported that they used the frames to offer the child a change of position; improve BMD, breathing, bladder, and bowel functions; reduce risk of fractures and joint contractures; reduce risk of hip dislocation or damage; and improve motor abilities, communication, vision, activity enjoyment, participation in activities, and peer interaction.
Parents reported the benefits they observed for their child (Table 3). Eighty-nine percent of parents reported more than one benefit. When parents were asked to indicate the three most important benefits of standing frames, the most frequent choice was opportunity for a change of position; second was reduction of the risk of hip dislocation or damage, and equal third was improvement of bladder and bowel function, and reduced risk of joint contractures. Offering the child the opportunity for a change in position was also the most frequently reported indication of prescribing clinicians and nonprescribing professionals for standing frame use (Table 3).
Both prescribing clinicians and nonprescribing professionals reported that environmental and personal factors determined the most appropriate standing frame to use. They highlighted the issues of cost, space for use and storage, availability of frames, and parent/young person choice of frame.  Note. Dash indicates that the item was not a response option for that group of participants. a Percentages were calculated out of a total of 67, because this is how many participants were eligible to respond to those questions (parents who had a child who currently uses a standing frame).  Unfortunately this survey cannot explain why this is the case; however, the findings are important to note both clinically and for potential research with respect to delivery of care, and outcome measures to evaluate the prescribed regime.
Most participants described perceived benefits of standing frames in terms of body structure and function such as bladder or bowel functions; activity such as improved motor abilities; and participation such as interaction with peers. They also reported other benefits such as improvement in BMD and prevention of hip dislocation. They noted challenges related to environmental and personal factors such as physical space and the child 0 s pain.
With respect to body structure and function, participants perceived benefits despite the lack of evidence in the literature. For example, 72.5% of prescribing clinicians reported a belief that frames improve bladder and bowel functions, yet we found only one single-case study in a child with CP and chronic constipation (Rivi et al., 2014).
Respondents also perceived standing frames to help with participation, enjoyment, and communication. Physical assistance and environmental adaptations improve participation in children with CP (Schenker, Coster, and Parush, 2006), but there is no research relating specifically to standing frames. Being at standing height may be advantageous for social interaction and independence, but this is dependent on the position and activities of other individuals. When a person is using a wheelchair, a standing companion receives more eye contact from third parties, giving the impression that the wheelchair user depends on their standing companion (Edelmann et al., 1984). In terms of activity, upper limb function can be affected by positioning. Selffeeding may be enhanced by standing, but picking up small objects is easier if sitting (Noronha, Bundy, and Groll, 1989). Therefore, it is necessary to explore how standing frames can promote or restrict participation in specific activities, at various times and different environments and in children of different ages.
Each participant group identified significant "environmental" challenges, particularly physical space for use and storage. Huang et al. also found space to be a major factor restricting assistive device use (including standing frames) by parents and teachers in their study in Taiwan Beveridge, 2009a, 2009b). Other barriers in their study included inadequate teacher training, and personal factors such as feeling pressured to use equipment at school but not at home (Huang et al., 2009b). Huang did not report on carer availability for moving and handling, which was a reported difficulty in our sample.

| Limitations
Due to the methods of survey dissemination, we could not calculate response rates from each participant group. Physiotherapists engaged well, but we received fewer responses from orthopaedic surgeons and paediatricians than anticipated. Additionally, survey responders may have had stronger views or more experience with standing frames than nonresponders, introducing bias. This survey sought views from professionals and parents and asked them to report their children 0 s views.
Although standing frame users 0 perspectives are essential, a survey is not an appropriate way to access children and young people with CP GMFCS IV and V.
Specific limitations of some questions became apparent during analysis. Prescribing clinicians and nonprescribing professionals were asked to answer questions with respect to children with CP GMFCS IV and V, whereas parents were asked about standing frames in relation to their own child: Some parents had children with better mobility. This may explain some of the differences between the perceptions of parents and clinicians. Further, there was no specific question regarding maintenance of range of movement for therapeutic reasons (e.g., stepping and standing to aid transfer) "versus" functional mobility (e.g., maintaining ambulation in adulthood).

| CONCLUSIONS
This is the first survey of UK standing frame practice. It demonstrates investment of health professionals, education staff, and parents in the use of standing frames, who report a range of clinical indications and perceived benefits. It also provides insight into the challenges of use, which may impact on adherence to a prescribed standing programme. Note. Percentages add up to greater than 100% because participants could choose more than one option. Dash indicates that the item was not a response option for that group of participants. a Percentages were calculated out of a total of 52, because this is the number of participants who were eligible to respond to those questions AND provided an answer (parents who had a child who currently uses a standing frame [only outside of the home] did NOT answer this question).
b Percentages were calculated out of a total of 33, because this the number of participants who were eligible to respond to those questions AND provided an answer (ONLY parents who had a child who currently uses a standing frame [but do not use it at home] answered this question).
We present findings that provide a platform for considering (a) clinical delivery of the intervention, (b) assessment of appropriate outcomes according to the indications and perceived benefits, and (c) how we may develop further evaluative research regarding standing frame use in young people with CP.