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

Goodwin, Jane; Lecouturier, Jan; Crombie, Sarah; Smith, Johanna; Basu, Anna; Colver, Allan; Kolehmainen, Niina; Parr, Jeremy; Howel, Denise; McColl, Elaine; Roberts, Andrew; Miller, Keith; Cadwgan, Jill

doi:10.1111/cch.12540

Cited by 17 publications

(21 citation statements)

References 16 publications

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“…Service users and their carers relied heavily on equipment to complete even the most basic aspects of daily life, such as getting out of bed and sitting up. It was interesting that the impact of this essential equipment on participants was found to be both enabling and frustrating, similar to findings from other studies (Goodwin et al., 2018a, 2018b, 2019; Hutton and Coxon, 2011). Notably, participants made little reference to the widely perceived physiological benefits of postural management reported in previous studies (Robertson et al., 2016; Vekerdy, 2007), with only one participant acknowledging a positive impact on breathing.…”

Section: Discussionsupporting

confidence: 85%

“…This is the first study to examine both carers’ and service users’ experiences of 24-hour postural management as a whole using focus group methodology. Previous studies have addressed certain elements, such as standing frames, and have focused solely on conditions such as cerebral palsy (Goodwin et al., 2018a, 2018b, 2019), while others have addressed the views of parents, teachers and therapists (Hotham et al., 2017; Hutton and Coxon, 2011; McDonald et al., 2007; Maher et al., 2011; Nicolson et al., 2012).…”

Section: Discussionmentioning

confidence: 99%

“…Although the evidence base for 24-hour postural management continues to grow (Hotham et al., 2017; Meyling et al., 2018; Picciolini et al., 2016; Stephens et al., 2018), not enough is known about current practices in its use and its actual impact on the everyday life of individuals and carers (Nicolson et al., 2012; Robertson et al., 2016). Indeed, there has been acknowledgement of this important gap in evidence and a subsequent shift towards use of qualitative and/or mixed methodologies (Goodwin et al., 2018a, 2018b, 2019; Hotham et al., 2017). The current study was therefore designed to address this gap.…”

Section: Introduction and Review Of Literaturementioning

confidence: 99%

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Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability

Stinson

Crawford

Madden

2020

British Journal of Occupational Therapy

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Introduction The clinical benefits of 24-hour postural management are widely recognised by occupational therapists, but little is known about its impact on service users and carers or whether clinical practice is consistent across regions. The aim of this research was to investigate the use of 24-hour postural management by occupational therapists and to explore its impact on service users with neurodisability and their carers. Methods Quantitative and qualitative methods were employed in two phases: (a) online survey with 96 occupational therapists across one UK region, with data analysed by descriptive statistics and correlations; (b) focus groups with service users and/or carers ( n = 9), with data analysed by thematic analysis. Results Findings showed moderate positive correlation between frequency of use and (a) all key intervention skills and (b) knowledge of night-time positioning ( p < 0.001). Moderate positive correlations were found between level of training and (a) assessment skills and (b) knowledge of night-time positioning ( p < 0.001). The overarching theme from focus groups was ‘reliance on individualised equipment’, with overwhelming frustration from lack of support, loss of identity, equipment cost, insufficient focus on preventative strategies and accessibility issues. Conclusion A clinical practice guideline, including training, is crucial to direct practice. Providers must engage with service users and carers to address their frustrations.

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Section: Discussionsupporting

confidence: 85%

Section: Discussionmentioning

confidence: 99%

Section: Introduction and Review Of Literaturementioning

confidence: 99%

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Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability

Stinson

Crawford

Madden

2020

British Journal of Occupational Therapy

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“…We found that three in four adults spent at least 8 h of the 24 h in a day lying (76%) and 8 h or more in sitting (74%). Almost two thirds (67%) of the adults who used standing support used it <1 h per day, which is similar to the 64% previously reported for children in the UK ( 21 ). This finding is concerning, as it implies that adults who use standing devices spend 23 out of the 24 h per day either sitting or lying.…”

Section: Discussionsupporting

confidence: 83%

Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing

Rodby‐Bousquet

2021

Front. Neurol.

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Purpose: To describe the use of assistive devices and postural asymmetries in lying, sitting and standing positions in adults with cerebral palsy, and to analyze postural asymmetries and any associations with their ability to maintain or change position and time in these positions.Methods: A cross-sectional study based on data from the Swedish Cerebral Palsy follow-up program of 1,547 adults aged 16–76 years, at Gross Motor Function Classification System (GMFCS) levels I (n = 330), II (n = 323), III (n = 235), IV (n = 298), and V (n = 361). Assistive devices such as wheelchairs, seating systems, adjustable beds, standing equipment and time in each position were reported. The Posture and Postural Ability Scale was used to identify asymmetries and rate the ability to maintain or change position. Binary logistic regression models were used to estimate odds ratios (OR) for postural asymmetries in supine, sitting and standing.Results: Assistive devices were used by 63% in sitting (range 5–100% GMFCS levels I–V), 42% in lying (4–92% levels I-V), and 32% in standing (2–70% levels II–V). Wheelchairs were used as seating systems by 57%. Most adults had postural asymmetries in supine (75%; range 35–100% levels I–V), sitting (81%; 50–99% levels I–V) and standing (88%; 65–100% levels I–V). Men were more likely than women to have postural asymmetries, and the likelihood of postural asymmetries increased with age, GMFCS levels and inability to change position. Inability to maintain position increased the probability of postural asymmetries in all positions from OR 2.6 in standing to OR 8.2 in lying and OR 13.1 in sitting.Conclusions: Almost twice as many adults used assistive devices in sitting than in lying or standing. Two thirds of the adults who used standing devices used it for <1 h per day, indicating that they might spend the remaining 23 out of 24 h per day either sitting or lying. Asymmetric postures were frequent across all ages and were highly associated with inability to change or maintain position.

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“…Repetitive exposure to acute pain due to physical therapy, botulinum injections, iatrogenic procedures (e.g. casting, braces, or standing frames) or even daily care (e.g. bathing, dressing, suctioning, etc.…”

Section: What We Know Nowmentioning

confidence: 99%

Pathophysiology of chronic pain in cerebral palsy: implications for pharmacological treatment and research

Blackman

Svensson

Marchand

2018

Develop Med Child Neuro

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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

Abstract: Background: Consensus opinion supports standing frame use as part of postural manage-

Cited by 17 publications

References 16 publications

Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability

Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability

Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing

Pathophysiology of chronic pain in cerebral palsy: implications for pharmacological treatment and research

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