Resources search

A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

Expand view

This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

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

Expand view

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.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

Expand view

Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

Expand view

This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

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

Expand view

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

Expand view

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.

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

Expand view

Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

Expand view

Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

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

Expand view

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

Expand view

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

Expand view

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.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

Expand view

Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

Expand view

Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

‘It’s been taken away’: an experience of a disappearing dyslexia diagnosis

CAMERON, Harriet
2021

Expand view

This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as ‘dyslexic’, and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive ‘life’ of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth’s story, from ‘struggle’, to ‘legitimation’ to ‘derogation’, and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

When differences are made into likenesses: the normative documentation and assessment culture of the preschool

KARLSUDD, Peter
2021

Expand view

This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.

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

Expand view

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.

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

Expand view

Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

Expand view

Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

Expand view

Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

The invisible minority: why do textbook authors avoid people with disabilities in their books?

JENSEN, Magne Skibsted
HERREBRØDEN, Marte
ANDREASSEN, Ulf Rune
2021

Expand view

Representation of disability in school textbooks may influence pupils’ knowledge and perceptions of people with disabilities. The aim of this study was to investigate representation of people with disabilities in school textbooks. The study employed a mixed-methods approach. Quantitative frequency analysis was used to investigate the extent of representation of disabilities in texts and pictures in 78 Norwegian textbooks for Grades 5–10. Regarding texts, the results showed that people with disabilities were represented in less than half of these textbooks (49%). Concerning pictures, people with disabilities were even less represented, appearing in only 29% of the textbooks. These quantitative findings were supplemented by a qualitative survey of textbook authors, who were asked to explain the marked absence of disability references in their own books and in school textbooks in general. The two most frequent explanations were that textbook authors had either overlooked people with disabilities, or that the Norwegian National Curriculum (Kunnskapsdepartementet 2006. Lærerplanverket for Kunnskapsløftet (LK06) [The Norwegian National Curriculum]. https://www.udir.no/lk20/overordnet-del/) did not explicitly mention this minority. We discuss these explanations as expressions of conscious considerations rather than unconscious omissions.

Pages

E-bulletin