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Preferences regarding the way of use and design of a work ability prognosis support tool: a focus group study among professionals

LOUWERSE, Ilse
HUYSMANS, Maaike A
VAN RIJSSEN, Jolanda H J
OVERVLIET, Joyce
VAN DER BEEK, Allard J
ANEMA, Johannes R
November 2019

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Purpose: To explore the preferable way of use and design of a work ability prognosis support tool for insurance physicians (IPs) and labour experts (LEs), based on a prediction model for future changes in work ability among individuals applying for a work disability benefit.

 

Methods: We conducted three focus groups with professionals of the Dutch Social Security Institute (17 IPs and 7 LEs). Data were audio recorded and qualitatively analysed according to the main principles of thematic analysis.

 

Results: Clarity and ease of use were mentioned as important features of the tool. Most professionals preferred to make their own judgement during the work disability assessment interview with the claimant and afterwards verify their evaluation with the tool. Concerning preferences on the design of the tool, dividing work disability claimants into categories based on the outcome of the prediction model was experienced as the most straightforward and clear way of presenting the results. Professionals expected that this encourages them to use the tool and act accordingly.

 

Conclusions: The tool should be easy to access and interpret, to increase the chance that professionals will use it. This way it can optimally help professionals making accurate prognoses of future changes in work ability.

Capability of deaf children with a cochlear implant

RIJKE, Wouter J
VERMEULEN, Anneke M
WENDRICK, Karine
MYLANUS, Emmanuel
LANGEREIS, Margreet C
VAN DER WILT, Gert Jan
November 2019

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Introduction: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected.

 

Methods: To explore children’s post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8–12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing.

 

Results: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school.

 

Conclusion: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.

Entering the labor market: increased employment rates of young adults with chronic physical conditions after a vocational rehabilitation program

BAL, Majolijn I
ROELOFS, Pepijn P D M
HILBERINK, Sander R
VAN MEETEREN, Jetty
STAM, Henk J
ROEBROECK, Marij E
MIEDEMA, Harald S
November 2019

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Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention (‘At Work’).

 

Materials and methods: Participants aged between 16 and 27 years (n = 90) were recruited via rehabilitation physicians and a jobcoach agency and participated in a vocational rehabilitation program. Cochran’s Q and McNemar tests served to test the development of intervention participants’ paid employment over time. Chi-square tests were used to compare intervention participants’ paid employment level with national reference data selected on age and having a self-reported chronic physical condition.

 

Results: Paid employment level of the intervention cohort significantly increased from 10.0% at baseline to 42.4% at 2-years follow-up (p < 0.001). At 2-years follow-up, their employment rates approached the employment rates of national reference data (42.4% versus 52.9%, p = 0.17).

 

Conclusion: Starting from a disadvantaged position, the paid employment rate of the intervention cohort substantially increased over time, approaching the employment rate of reference data. ‘At Work’ seems to be appropriate for supporting this specific group who face obstacles to enter the labor market, to find competitive employment.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Design of the user interface for “Stappy”, a sensor-feedback system to facilitate walking in people after stroke: a user-centred approach

JIE, Li-Juan
JAMIN, Gaston
SMIT, Kate
BEURSKENS, Anna
BRAUN, Susy
2019

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Introduction: 

Sensor-feedback systems can be used to support people after stroke during independent practice of gait. The main aim of the study was to describe the user-centred approach to (re)design the user interface of the sensor feedback system “Stappy” for people after stroke, and share the deliverables and key observations from this process.

 

Methods: 

The user-centred approach was structured around four phases (the discovery, definition, development and delivery phase) which were fundamental to the design process. Fifteen participants with cognitive and/or physical limitations participated (10 women, 2/3 older than 65). Prototypes were evaluated in multiple test rounds, consisting of 2–7 individual test sessions.

 

Results: 

Seven deliverables were created: a list of design requirements, a personae, a user flow, a low-, medium- and high-fidelity prototype and the character “Stappy”. The first six deliverables were necessary tools to design the user interface, whereas the character was a solution resulting from this design process. Key observations related to “readability and contrast of visual information”, “understanding and remembering information”, “physical limitations” were confirmed by and “empathy” was additionally derived from the design process.

 

Conclusions: 

The study offers a structured methodology resulting in deliverables and key observations, which can be used to (re)design meaningful user interfaces for people after stroke. Additionally, the study provides a technique that may promote “empathy” through the creation of the character Stappy. The description may provide guidance for health care professionals, researchers or designers in future user interface design projects in which existing products are redesigned for people after stroke.

LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome

HIELKEMA, Tjitske
BOXUM, Anke G
HAMER, Elisa G
LA BASTIDE-VAN GEMERT, Sacha
DIRKS, Tineke
REINDERS-MESSELINK, Heleen A
MAATHUIS, Carel G B
VERHEIJDEN, Johannes
GEERTZEN, Jan H B
HADDERS-ALGRA, Mijna
May 2019

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Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme “Coping with and Caring for infants with special needs (COPCA)” or typical infant physiotherapy.

 

Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.

 

Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family’s quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including “caregiver coaching.”

 

Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial

HEPPE, Eline C M
WILLEMEN, Agnes M
KEF, Sabina
SCHUENGEL, Carlo
May 2019

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Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.

 

Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.

 

Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.

Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study

VAN GORP, Marloes
ROEBROECK, Marij E
VAN ECK, Mirjam
VOORMAN, Jeanine M
TWISK, Jos W R
Dallmeijer, Annet J
Van Wely, Leontien
May 2019

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Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP).

 

Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9–13 years) included 67 young adults with CP (age 21–27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05).

 

Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R2 = 67–87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R2 to 79–90%.

 

Conclusions: Childhood factors account for 79–90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation.

The Significance of Person-Centered Care for Satisfaction With Care and Well-Being Among Informal Caregivers of Persons With Severe Intellectual Disability

HAKOBYAN, Liana
NIEBOER, Anna P
FINKEN߆GEL, Harry
CRAMM, Jane M
2019

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Person-centered care (PCC) delivery and co-creation of care (establishing productive patient-professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person-centered care (PCC) and co-creation of care as well. This study aims to identify the relationship between PCC, co-creation of care and outcomes among informal caregivers of PWID. A cross-sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other

family member). All PWID were living in residential homes of a long-term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty-one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co-creation of care were positively related to informal caregivers’ satisfaction with care and their own well-being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well-being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co-creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well-being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co-creation of care matter for satisfaction with care and the well-being of informal caregivers of PWID.

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia

KERSTENS, Hans C J W
SATINK, Ton
NIJKRAKE, Maarten J
DE SWART, Bert J M
VAN LITH, Bas J H
GUERTS, Alexander C H
NIJHUIN-VAN DER SANDEN, Maria W G
April 2019

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Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

 

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

 

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

 

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

Physical-activity support for people with intellectual disabilities: a theory-informed qualitative study exploring the direct support professionals’ perspective

BOSSINK, Leontien W M
VAN DER PUTTEN, Annette A J
VLASKAMP, Carla
April 2019

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Purpose: The study aims to explore factors that influence (facilitate or impede) direct support professionals supporting people with intellectual disabilities in engaging in physical activity. Influencing factors will be synthesized into a conceptual model to set the stage for developing future interventions and policies to change direct support professional behavior.

 

Method: Based on the Theoretical Domains Framework, semi-structured interviews were conducted with 25 direct support professionals of people with mild to profound intellectual disabilities. Influencing factors were analyzed using both inductive and deductive coding strategies. The theoretical sources of behavior (i.e., capability, opportunity, and motivation) were leading components in the development of a conceptual model.

 

Results: Five influential factors facilitating or impeding physical-activity support were isolated that related to direct support professionals’ capability, eight to the opportunities afforded them, and 11 to their motivation. Another six inductively emerged, which related to the characteristics of people with intellectual disabilities and which then influenced the capability, opportunity, or motivation to engage in physical-activity support by direct support professionals.

 

Conclusions: Although experiences differed, the conceptual model developed here provides theoretically based targets for a comprehensive approach to changing direct support professional behavior and thus promoting the support of physical activity in people with intellectual disabilities.

Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

WONG CHONG, Ruud
WILLEMEN, Agnes M
VOORMAN, Jeanine
KETELAAR. Marjolijn
BECHER, Jules
VERHEIJDEN, Johannes
SCHUENGEL, Carlo
April 2019

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Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.

 

Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.

 

Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.

 

Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Changes in employment status, barriers to, and facilitators of (return to) work in breast cancer survivors 5–10 years after diagnosis

VAN MAARSCHALKERWEERD, Pomme E A
SCHAAPVELD, Michael
PAALMAN, Carmen H
AARONSON, Neil K
DUIJTS, Saskia F A
March 2019

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Purpose: To qualitatively investigate changes in employment status, barriers to and facilitators of (return to) work in breast cancer survivors 5–10 years after diagnosis.

 

Materials and methods: Women were eligible to participate in the focus groups if they were younger than 55 years and were employed at time of diagnosis. Data were analysed by two independent researchers using thematic content analysis.

 

Results: Nineteen women participated in three semi-structured focus groups, of whom 18 reported a change in employment status 5–10 years after diagnosis. Perceived barriers to (return to) work shortly after breast cancer diagnosis tended to be disease- and treatment-related, while 5–10 years later, they were personal- and work-related. Participants recommended open communication and support at the workplace, and comprehensive information from (occupational) health care professionals to facilitate dealing with breast cancer at work.

 

Conclusions: Breast cancer survivors still experience changes in employment status 5–10 years after diagnosis. (Occupational) health care professionals should be alert that perceived barriers for returning to work change over time. Future research should focus on increasing awareness (at work) of breast cancer survivors’ needs, providing adequate information and support to all involved, and developing interventions to sustain survivors’ work ability at the long term.

Adding meaning to physical fitness test results in individuals with intellectual disabilities

OPPEWAL, Alyt
HILGENKAMP, Thessa I M
February 2019

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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.

 

Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.

 

Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).

 

Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination

PELLEBOER-GUNNINK, Hannah A
VAN WEEGHEL, Jaap
EMBREGTS, Petri J C M
January 2019

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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.

 

Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.

 

Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.

Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs

FISCHER, Maarten J
ASSELMAN, Fay-Lynn
KRUITWAGEN-VAN REENAN, Esther T
VERHOEF, Marjolein
WADMAN, RENSKE I
VISSER-MEILEY, Johanna M A
VAN DER POL, W Ludo
SCHRODER, Carin D
January 2019

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Purpose: Patients with spinal muscular atrophy (SMA) suffer from slowly progressive weakness of axial, respiratory and proximal muscles, leading to restrictions in activity and participation. This study aims to investigate patients’ level of psychological well-being, using the International Classification of Functioning model and self-determination theory as theoretical frameworks.

 

Materials and methods: In this cross-sectional study, adults with SMA were invited to complete a questionnaire. Instruments to assess psychological well-being included the Satisfaction with Life Scale, the Rosenberg Self-Esteem Scale and the Positive and Negative Affect Scale. Hierarchical lineal regression analyses were performed to investigate the contribution of participation (International Classification of Functioning model) and satisfaction of the need for autonomy, competence and relatedness (self-determination theory) to well-being.

 

Results: Ninety-two respondents (67%) returned the questionnaire. Levels of psychological well-being were comparable to that of healthy reference samples. Well-being was unrelated to sociodemographic variables or illness characteristics. By contrast, well-being was closely related to respondents’ satisfaction with participation, and their sense of autonomy, competence and relatedness.

 

Conclusions: This study illustrates the relevance of psychological needs for understanding well-being of individuals with SMA. Supporting patients in meeting their psychological needs should become an objective of person-centred care for this population.

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