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What fails: and what's not needed, Disability Dongles

HOLLOWAY, Catherine
LANDRE, Anna
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

A discussion concerning disability dongles (expensive technical solutions to disability problems without sufficient design input from disabled people - examples include a stair climbing wheelchair and an exoskeleton). Setting up networks of disabled people to input requirements, contextualisation of issues (for example the lack of repair facilities for wheelchairs especially in the global south), telemedicine, and the difficulties in appropriate funding for appropriate projects are discussed.

  

The global birth prevalence of clubfoot: a systematic review and meta-analysis

SMYTHE, Tracey
ROTENBURG, Sarah
LAVY, Chris
August 2023

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Estimates of the birth prevalence of clubfoot in low and middle income settings range from 0.5 to 2 per 1000 births. However, there is currently no estimate of global birth prevalence of clubfoot.

A systematic review of studies was carried out reporting the birth prevalence of clubfoot across all countries and regions worldwide in the last 10 years. Africa Wide Information, EMBASE, CINAHL, Global Health, LILACS and Medline databases were searched for relevant studies from January 1st 2012 to February 9th 2023. Pooled prevalence estimates were calculated using the inverse variance method, and a random effects model was applied to account for heterogeneity between studies.

 

eClinicalMedicine,  Vol 63 September, 2023

DOI:https://doi.org/10.1016/j.eclinm.2023.102178

Experiences of lower limb prosthesis users in Kenya: a qualitative study to understand motivation to use and satisfaction with prosthetic outcomes

MATTICK, Kate
OLDFREY, Ben
DONOVAN-HALL, Maggie
MAGOMERE, Grace
GAKUNGA, Joseph
HOLLOWAY, Catherine
December 2022

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An estimated 1.5 million people undergo limb amputation each year [1]. Low- and middle-income countries (LMICs) are projected to have a rapid increase in people living with an amputation in the coming years due to prevalence of non-communicable disease, trauma and conflict. This paper explores the personal and system factors that motivate and enhance outcomes for patients accessing a prosthetic service and using a lower-limb prosthesis within a low resource setting.

This study employed a qualitative approach to explore the motivations and satisfaction of individuals with lower limb loss engaging with a prosthetic service in Mombasa, Kenya. In-depth interviews were conducted over Microsoft Teams with 10 lower limb prosthesis users and thematic analysis was applied.

 

Disability and Rehabilitation Volume 45, 2023 - Issue 26

https://doi.org/10.1080/09638288.2022.2152875

"We bear it and accept our fate” Perceptions of healthcare access from people with disabilities in Cox’s Bazar

PANELLA, Amanda
June 2022

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In November and December 2021, Ground Truth Solutions (GTS) and the International Organisation for Migration’s (IOM) Needs and Population Monitoring unit (NPM) conducted qualitative interviews with persons with mobility and vision impairments from Rohingya refugee and host community populations with the aim of better informing and supporting agencies in developing disability-inclusive programmes and engagement activities. These interviews focused on access to health services, aiming to gain insight into how people with disabilities experience engaging with healthcare services – as well as perceived barriers to access. It also looked at health information needs so that the humanitarian community will be better equipped to identify gaps in programming, deliver more equitable services, and build trust with this marginalised group. To weave tangible experiences into the narrative and bring findings to life, this research took a ‘user journey’ approach to create a set of ‘personas’ derived from key informant interviews with Rohingya and Host Community people with disabilities in Cox’s Bazar, resulting in this highly illustrative report.

Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

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Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

Assessment of functioning and disability in patients with low back pain – the low back pain assessment tool. Part 1: development

IBSEN, Charlotte
SCHIØTTZ-CHRISTENSEN, Berit
NIELSEN, Claus Vinther
HØRDER, Mogens
SCHMIDT, Anne Mette
MARIBO, Thomas
2021

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Purpose: To present the process used to develop the low back pain (LBP) assessment tool including evaluation of the initial content validity of the tool.


Methods: The development process comprised the elements: definition of construct and content, literature search, item generation, needs assessment, piloting, adaptations, design, and technical production. The LBP assessment tool was developed to assess the construct “functioning and disability” as defined by the International Classification of Functioning, Disability and Health (ICF). Involvement of patients and health professionals was essential.

 

Results: The elements were collapsed into five steps. In total, 18 patients and 12 health professionals contributed to the content and the design of the tool. The LBP assessment tool covered all ICF components shared among 63 ICF categories.


Conclusions: This study presents the process used to develop the LBP assessment tool, which is the first tool to address all ICF components and integrate biopsychosocial perspectives provided by patients and health professionals in the same tool. Initial evaluation of content validity showed adequate reflection of the construct “functioning and disability”. Further work on the way will evaluate comprehensiveness, acceptability, and degree of implementation of the LBP assessment tool to strengthen its use for clinical practice.

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

A high prevalence of manual wheelchair rear-wheel misalignment could be leading to increased risk of repetitive strain injuries

OTT, Joseph
HENDERSON, Travis
WILSON-JENE, Holly
KOONTZ, Alicia
PEARLMAN, Jonathan
2021

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Purpose: To determine the prevalence and severity of manual wheelchair rear wheel misalignment in community-dwelling manual wheelchair users and estimate the associated increases in rolling resistance (RR) and risk of repetitive strain injuries (RSIs).


Materials and Methods: Data were collected in an outpatient rehabilitation clinic, a university research laboratory, and at adaptive sporting events in the United States. Two hundred active, self-propelling man- ual wheelchair users were recruited. Angular misalignment (referred to as toe angle) while the wheelchair was loaded with the user, and the difference between the maximum and minimum toe angle (referred to as slop) with the wheelchair unloaded.

 

Results: Average results for toe angle and slop (movement in the rear wheels) were 0.92 and 0.61 degrees, respectively. Using a lab-based testing method, we quantified the impact of increased RR forces due to misalignment in increased RR forces. Our results indicate that the average toe angle while under load and slop, without loading, measured in the community increase required propulsion force by 3.0 N. Combined toe angle and slop (i.e., the worst-case scenario) added increased propulsion force by 3.9 N. Conclusions: We found that rear-wheel misalignment was prevalent and severe enough that it may increase the risk for RSIs and decrease participation. To mitigate this issue, future work should focus on reducing misalignment through improved maintenance interventions and increased manufacturing qual- ity through more stringent standards.

The influence of a contoured seating base on pressure distribution and discomfort

DE MARE, Lieke
DE GROOT, Bas
DE KONING, Fleur
GEERS, Richard
TETTEROO, Daniel
2021

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Purpose: This research paper examines how contouring of a wheelchair seating base can help prevent pressure sores by distributing pressure over the buttocks. Contouring wheelchair cushioning is already done to some extent and has proved to be beneficial for pressure distribution. We researched the effect of contouring the seating base, and whether contouring the seating base affects effectiveness in pressure distribution and perceived discomfort.

 

Materials & methods: 13 healthy participants performed a within-subject experiment with three differ- ently contoured seating bases. Perceived comfort and seating pressure were measured for each condition.
Results: Results indicate that a more contoured base is positive for both comfort and increased pressure distribution.

 

Conclusions: Contoured seating bases can provide increased comfort and improved pressure distribution over flat seating bases. Future research should examine the effect of contouring on stability, as well as compare the effects of contoured seating bases and contoured cushions.

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

People with Physical Disabilities playing Light Volleyball: A Qualitative Study in Hong Kong

Leung, Ka Man
Chu, William
Wong, Ming-Yu
2020

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Purpose: This study aimed at understanding the perceptions of people with physical disabilities regarding playing Light Volleyball (LVB), identifying the possible constraints and risks they might face while playing, and providing their suggestions for fine-tuning the Light Volleyball intervention programmes.

 

Method: Four focus group interviews were conducted with 17 participants who joined the Light Volleyball trial programme. The participants were 11 males and 6 females, with an average age of 53.5 years (SD=11.83 years). People with poliomyelitis (n = 15), spinal cord injury (n = 1), hearing impairment (n = 1) were included.

 

Results: Participants indicated improved reactivity and coordination, cooperation in team, happiness, and novelty in general as positive outcomes while playing Light Volleyball. They preferred to play in the seated position (i.e., sitting light volleyball - SLVB), and with simpler rules. They believed that their ability to play Light Volleyball was subject to their body constraints.

 

Conclusion: Sitting Light Volleyball can be one of the new physical activity options for future sport promotion among people with physical disabilities in the community. The effectiveness of playing Sitting Light Volleyball in enhancing health among people with physical disabilities needs to be studied in future.

Quality of wheelchair services as perceived by users in rural Bangalore district, India: a cross-sectional survey

GEILEN, Bart G
DE WITTE, Luc
NORMAN, Gift
GEORGE, Carolin Elizabeth
2020

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Background and aim:

This study investigated the current state of wheelchair services in Bangalore Rural district, as provided by Bangalore Baptist Hospital, and identified areas for improvement.

 

Method:

a cross-sectional survey was held among 50 wheelchair users. Data was collected on demographics, satisfaction, wheelchair skills and level of disability using QUEST, WST-Q and CHART-SF questionnaires.

 

Result:

Overall satisfaction can be described as more or less satisfied, scoring 3.8 out of 5. Wheelchair users were less satisfied with the services compared to the wheelchair itself. The skills a wheelchair users had were strongly correlated with satisfaction scores (p < 0.01). Differences in satisfaction between genders were observed and related to multiple factors.

 

Conclusion:

Wheelchairs should be easy to use with support services being easily accessible. A wheelchair should be delivered together with a training program to provide the user with the skills to operate and maintain the wheelchair. There are gender-wise differences in satisfaction towards wheelchair services that influence satisfaction.

Postural asymmetries, pain, and ability to change position of children with cerebral palsy in sitting and supine: a cross-sectional study

CASEY, Jackie
ROSENBLAD, Andreas
RODBY-BOUSQUET, Elisabet
2020

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Purpose: To examine any associations between postural asymmetries, postural ability, and pain for chil- dren with cerebral palsy in sitting and supine positions.

 

Methods: A cross-sectional study of 2,735 children with cerebral palsy, 0-18years old, reported into the Swedish CPUP registry. Postural asymmetries, postural ability, the gross motor function classification sys- tem levels I–V, sex, age and report of pain were used to determine any relationship between these variables.

 

Results: Over half the children had postural asymmetries in sitting (n1⁄41,646; 60.2%) or supine (n1⁄41,467; 53.6%). These increased with age and as motor function decreased. Children were twice as likely to have pain if they had an asymmetric posture (OR 2.1–2.7), regardless of age, sex and motor func- tion. Children unable to maintain or change position independently were at higher risk for postural asym- metries in both supine (OR 2.6–7.8) and sitting positions (OR 1.5–4.2).

 

Conclusions: An association was found between having an asymmetric posture and ability to change position in sitting and/or lying; and with pain. The results indicate the need to assess posture and provide interventions to address asymmetric posture and pain.

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