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Wat kun je doen om mensen met een verstandelijke beperking gezonder te laten leven? In deze workshop nemen Annelies en Lidewij jullie mee in de ontwikkelingen van leefstijl in de wetenschap en praktijk. We zoomen in op een cursus voor begeleiders en hoe vindt leefstijl zijn weg in het onderwijs voor de professionals van de toekomst? We nemen jullie vervolgens actief mee in hoe leefstijl aandacht heeft in de dagelijkse praktijk. Doe je mee?

Background: For a healthy lifestyle, people with moderate, severe, and profound intellectual disabilities living in residential facilities and/or participating in day activity centers are dependent on their direct support professionals. However, it is unclear what knowledge and skills these direct support professionals require to support these individuals in living a healthy lifestyle. Therefore, the aim of this study was to identify the needs of direct support professionals for supporting these people with moderate to profound intellectual disabilities to achieve and maintain a healthy lifestyle. Method: Direct support professionals (n = 28) were interviewed with the use of a semi-structured protocol based on the theoretical domains framework. The interviews were analyzed with a theory-driven content analysis. Results: The most frequently mentioned needs referred to the following domains of the theoretical domains framework: environmental context and resources (n = 27), social/professional role and identity (n = 25), social influence (n = 25), skills (n = 24), and knowledge (n = 23). Conclusion: To support people with moderate to profound intellectual disabilities in leading a healthy lifestyle, direct support professionals (DSPs) primarily needed support related to the domain environmental context and resources. Within this domain available time, dealing with different seasons, and a healthy lifestyle policy in the organization need attention. Development of interventions targeting these DSPs needs is required.

Het programma Volwaardig leven organiseert jaarlijks een congres voor mensen met een beperking, naasten en professionals werkzaam in de gehandicaptenzorg. Het congres geeft gelegenheid om samen het gesprek te voeren over de toekomst van de gehandicaptensector. Hier presenteren we de resultaten van de acties uit het programma Volwaardig leven. Ook laten we met elkaar zien hoe er gewerkt wordt aan toekomstbestendige zorg.

Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including powerassisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for the motor activation of people with PIMD in the future.

Dit rapport gaat over het implementatieproces van de producten van De Krachten Gebundeld. Deze producten zijn het leertraject voor begeleiders en een omgevingsscan voor woon- en dagbestedingslocaties (zie bijlage 1). Beide producten richten zich op het ondersteunen van een gezonde leefstijl voor mensen met een matige tot zeer ernstige verstandelijke beperking en zijn te vinden op de productenwebsite: dekrachtengebundeld.nl. Tijdens de implementatie is ondersteuning geboden aan 4 zorgorganisaties die de producten implementeerden in 2021 (looptijd project januari - juli). De ervaringen vanuit dit implementatieproces zijn samen met aandachtspunten gebundeld in dit rapport voor toekomstige kartrekkers vanuit zorgorganisaties.

Dit rapport gaat over het implementatieproces van de producten van De Krachten Gebundeld. Deze producten zijn het leertraject voor begeleiders en een omgevingsscan voor woon- en dagbestedingslocaties (zie bijlage 1). Beide producten richten zich op het ondersteunen van een gezonde leefstijl voor mensen met een matige tot zeer ernstige verstandelijke beperking en zijn te vinden op de productenwebsite: dekrachtengebundeld.nl. Tijdens de implementatie is ondersteuning geboden aan 4 zorgorganisaties die de producten implementeerden in 2021 (looptijd project januari - juli). De ervaringen vanuit dit implementatieproces zijn samen met aandachtspunten gebundeld in dit rapport voor toekomstige kartrekkers vanuit zorgorganisaties.

Een gezonde leefstijl geeft voor mensen met een verstandelijke beperking grote potentiële gezondheidswinst en meer mogelijkheden tot participatie in de maatschappij. Mensen met een verstandelijke beperking hebben voor een gezonde leefstijl ondersteuning nodig van professionele begeleiders en een gezonde leefomgeving die gezond gedrag stimuleren. In het project De Krachten Gebundeld werkten vier Nederlandse onderzoeksgroepen samen met ervaringsdeskundigen, hun naasten en 19 zorgorganisaties. Het doel was het ontwikkelen van kennis en praktijkproducten die bijdragen aan een gezondheidsbevorderende omgeving voor mensen met een matige tot zeer ernstige verstandelijke en meervoudige beperking, waarin zij worden ondersteund bij en verleid tot een gezonde leefstijl, specifiek op het gebied van voldoende beweging en gezonde voeding.

Een gezonde leefstijl geeft voor mensen met een verstandelijke beperking grote potentiële gezondheidswinst en meer mogelijkheden tot participatie in de maatschappij. Mensen met een verstandelijke beperking hebben voor een gezonde leefstijl ondersteuning nodig van professionele begeleiders en een gezonde leefomgeving die gezond gedrag stimuleren. In het project De Krachten Gebundeld werkten vier Nederlandse onderzoeksgroepen samen met ervaringsdeskundigen, hun naasten en 19 zorgorganisaties. Het doel was het ontwikkelen van kennis en praktijkproducten die bijdragen aan een gezondheidsbevorderende omgeving voor mensen met een matige tot zeer ernstige verstandelijke en meervoudige beperking, waarin zij worden ondersteund bij en verleid tot een gezonde leefstijl, specifiek op het gebied van voldoende beweging en gezonde voeding.

Het onderzoek 'De Krachten Gebundeld!' wil mensen met een verstandelijke beperking helpen gezond te leven. Tijdens het symposium worden de resultaten van dit vierjarige onderzoeksproject gedeeld. Ook zijn er andere workshops en lezingen op het gebied van gezond leven van mensen met een verstandelijke beperking.

Background While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. We conducted a process evaluation of the implementation of ‘Care for Participation+’ (CFP+), a new intervention targeting the attitudes of direct support professionals (DSPs) toward the participation of adults with VSPID, within a residential facility in the Netherlands. Methods CFP+ was inspired by the Boston Psychiatric Rehabilitation Approach and adapted by adopting a new definition and operationalization of the concept of participation for adults with VSPID. Following systematic training, 16 DSPs of adults with VSPID were able to apply key elements of CFP+ to explore diverse roles and activities for this population, facilitating their self-management, teaching them necessary skills for participation, and organizing support. Our process evaluation entailed an investigation of the delivered dose, reach, fidelity, and adaptation of CFP+ during and after the CFP+ intervention. We also evaluated the mechanisms of impact and context using questionnaires, assignments, documentation, interviews, and a logbook. Results The intended dose, reach, and fidelity relating to the implementation of CFP+ were not achieved. Despite this fact, an assessment of the mechanisms of impact indicated that assignments of CFP+ were well (75%) or reasonably well (17%) understood by DSPs. CFP+ was applied by DSPs to stimulate self-management (83% of DSPs), new activities (100%), enhanced involvement in existing activities (67%) and to explore new roles (50%) for adults with VSPID. A negative contextual factor mentioned by the trainer and manager was the DSPs’ lack of commitment to the training program. Another negative contextual factor mentioned by DSPs was the lack of time for implementing CFP+. Conclusions CFP+ provides new opportunities to improve the participation of adults with VSPID. Despite the non-optimal conditions for implementing CFP+ and the DSPs’ general reluctance to apply the new intervention, some have actively used CFP+ within the residential facility. Future studies should focus on the outcomes of CFP+ regarding attitudinal changes among DSPs relating to the participation of adults with VSPID and their quality of life.

Background: While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. We conducted a process evaluation of the implementation of ‘Care for Participation+’ (CFP+), a new intervention targeting the attitudes of direct support professionals (DSPs) toward the participation of adults with VSPID, within a residential facility in the Netherlands. Methods: CFP+ was inspired by the Boston Psychiatric Rehabilitation Approach and adapted by adopting a new definition and operationalization of the concept of participation for adults with VSPID. Following systematic training, 16 DSPs of adults with VSPID were able to apply key elements of CFP+ to explore diverse roles and activities for this population, facilitating their self-management, teaching them necessary skills for participation, and organizing support. Our process evaluation entailed an investigation of the delivered dose, reach, fidelity, and adaptation of CFP+ during and after the CFP+ intervention. We also evaluated the mechanisms of impact and context using questionnaires, assignments, documentation, interviews, and a logbook. Results: The intended dose, reach, and fidelity relating to the implementation of CFP+ were not achieved. Despite this fact, an assessment of the mechanisms of impact indicated that assignments of CFP+ were well (75%) or reasonably well (17%) understood by DSPs. CFP+ was applied by DSPs to stimulate self-management (83% of DSPs), new activities (100%), enhanced involvement in existing activities (67%) and to explore new roles (50%) for adults with VSPID. A negative contextual factor mentioned by the trainer and manager was the DSPs’ lack of commitment to the training program. Another negative contextual factor mentioned by DSPs was the lack of time for implementing CFP+. Conclusions: CFP+ provides new opportunities to improve the participation of adults with VSPID. Despite the nonoptimal conditions for implementing CFP+ and the DSPs’ general reluctance to apply the new intervention, some have actively used CFP+ within the residential facility. Future studies should focus on the outcomes of CFP+ regarding attitudinal changes among DSPs relating to the participation of adults with VSPID and their quality of life.

Background: A feasible and reliable instrument to measure strength in persons with severe intellectual and visual disabilities (SIVD) is lacking. The aim of our study was to determine feasibility, learning period and reliability of three strength tests. Methods: Twenty-nine participants with SIVD performed the Minimum Sit-to-Stand Height test (MSST), the Leg Extension test (LE) and the 30 seconds Chair-Stand test (30sCS), once per week for 5 weeks. Feasibility was determined by the percentage of successful measurements; learning effect by using paired t test between two consecutive measurements; test–retest reliability by intraclass correlation coefficient and Limits of Agreement and, correlations by Pearson correlations. Results: A sufficient feasibility and learning period of the tests was shown. The methods had sufficient test–retest reliability and moderate-to-sufficient correlations. Conclusion: The MSST, the LE, and the 30sCS are feasible tests for measuring muscle strength in persons with SIVD, having sufficient test re-test reliability.

to meet the needs of people with intellectual disabilities.

Background: Promotion of a healthy lifestyle for individuals with mild intellectualdisabilities is important. However, the suitability of behaviour change techniques(BCTs) for these individuals is still unclear.Methods: A Delphi study was performed using the Coventry, Aberdeen & LOndon –REfined (CALO‐RE) taxonomy of BCTs (n = 40). Health professionals (professional caregivers, behavioural scientists, health professionals, intellectual disability physicians) participated in an online survey to determine whether BCTs were suitable or unsuitable. Comments from participants were analysed qualitatively.Results: Consensus was reached for 25 BCTs out of 40.The most suitable BCTs were barrier identification (97%), set graded tasks (97%) and reward effort towards behaviour (95%). No significant differences were found for intergroup effects.Conclusion: Regardless of their position and education level, health professionalsreached consensus about the suitability of BCTs for individuals with mild intellectual disabilities. Increased use of these BCTs could result in more effective promotion of a healthy lifestyle.

Voor de ondersteuning van personen met een visuele en (zeer) ernstige verstandelijke beperking (VEVB) is specifieke expertise nodig, welke overgedragen kan worden door cursussen of directe samenwerking in dagelijkse werksituaties. Dit onderzoek heeft in kaart gebracht wat kenmerken van expertise zijn in de ondersteuning van personen met VEVB, gericht op benadering en inrichting van de fysieke omgeving, en in hoeverre professionals deze expertise expliciet kunnen benoemen. 25 Kenmerken van expertise zijn bepaald door cursuscompetenties aan te vullen met bevindingen uit de literatuur en interviews met acht begeleiders. Het merendeel van de expertisekenmerken op het gebied van benadering en fysieke omgeving wordt genoemd door vijf of minder professionals. Drie van de 25 kenmerken worden niet benoemd. Het expliciet benoemen van de specifieke expertise blijkt lastig. Met de bevindingen en aanbevelingen van dit onderzoek kunnen praktijk en onderzoek verbeteringen aanbrengen aan bewustwording en implementatie van expertise waardoor de kwaliteit van ondersteuning kan verbeteren.

Background: Health care organizations supporting individuals with intellectual disabilities (IDs) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous intervention components, multiple levels of influence, and the explicit use of theory are factors that are considered to be essential for implementation in practice. A comprehensive written lifestyle policy provides for sustainability of a lifestyle approach. It is unknown to what extent these crucial factors for successful implementation are taken into consideration by health care organizations supporting this population. Aim: To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in health care organizations supporting people with ID. Methods: In this descriptive multiple case study of 9 health care organizations, qualitative data of the lifestyle approaches with accompanying interventions and their components were compiled with a newly developed online inventory form. Results: From 9 health care organizations, 59 interventions were included, of which 31% aimed to improve physical activity, 10% nutrition, and 59% a combination of both. Most (49%) interventions aimed at the educational component and less at daily (19%) and generic activities (16%) and the evaluation component (16%). Most interventions targeted individuals with ID and the professionals whereas social levels were underrepresented. Although 52% of the interventions were structurally embedded, only 10 of the 59 interventions were theory-driven. Conclusion: Health care organizations could improve their lifestyle approaches by using an explicit theoretical basis by expanding the current focus of the interventions that primarily concentrate on their clients and professionals toward also targeting the social and external environment as well as the introduction of a written lifestyle policy. This policy should encompass all interventions and should be the responsibility of those in the organization working with individuals with ID. In conclusion, comprehensive, integrated, and theory-driven approaches at multiple levels should be promoted.

Background: A modified version of the Berg Balance Scale (mBBS) was developed for individuals with intellectual and visual disabilities (IVD). However, the concurrent and predictive validity has not yet been determined.Aim: The purpose of the current study was to evaluate the concurrent and predictive validity of the mBBS for individuals with IVD.Method: Fifty-four individuals with IVD and Gross Motor Functioning Classification System (GMFCS) Levels I and II participated in this study. The mBBS, the Centre of Gravity (COG), the Comfortable Walking Speed (CWS), and the Barthel Index (BI) were assessed during one session in order to determine the concurrent validity. The percentage of explained variance was determined by analyzing the squared multiple correlation between the mBBS and the BI, COG, CWS, GMFCS, and age, gender, level of intellectual disability, presence of epilepsy, level of visual impairment, and presence of hearing impairment. Furthermore, an overview of the degree of dependence between the mBBS, BI, CWS, and COG was obtained by graphic modelling. Predictive validity of mBBS was determined with respect to the number of falling incidents during 26 weeks and evaluated with Zero-inflated regression models using the explanatory variables of mBBS, BI, COG, CWS, and GMFCS.Results: The results demonstrated that two significant explanatory variables, the GMFCS Level and the BI, and one non-significant variable, the CWS, explained approximately 60% of the mBBS variance. Graphical modelling revealed that BI was the most important explanatory variable for mBBS moreso than COG and CWS. Zero-inflated regression on the frequency of falling incidents demonstrated that the mBBS was not predictive, however, COG and CWS were.Conclusions: The results indicated that the concurrent validity as well as the predictive validity of mBBS were low for persons with IVD. (C) 2017 Elsevier Ltd. All rights reserved.

Iedereen wil fijn wonen (Bijna) iedereen woont. Iedereen wil zich fijn voelen in zijn of haar thuis. Ook mensen met een verstandelijke beperking en moeilijk verstaanbaar gedrag willen dat. Moeilijk verstaanbaar gedrag betekent dat mensen soms agressief zijn naar zichzelf, anderen en spullen. Ze maken soms in hun omgeving spullen kapot. Dit doen ze bijvoorbeeld omdat ze gefrustreerd zijn, bang of omdat ze schrikken. Ze kunnen namelijk moeilijk vertellen wat zij belangrijk vinden om zich fijn te voelen. Daarom is het belangrijk om daar onderzoek naar te doen. Kan architectuur helpen? Architecten zijn de mensen die een gebouw ontwerpen. Zij bedenken hoe het gebouw eruit moet zien van binnen en van buiten. Zij bedenken bijvoorbeeld hoe een woning wordt ingedeeld en waar het licht vandaan komt. Daarvoor moeten ze goed weten voor wie ze het huis ontwerpen en wat de nieuwe bewoners nodig hebben. Wij willen graag dat architecten begrijpen wat mensen met moeilijk verstaanbaar gedrag nodig hebben om zich fijn te voelen. We willen onderzoeken hoe architectuur een bijdrage kan leveren dat zij zo fijn mogelijk kunnen wonen. Kan architectuur tegenwerken? Omdat deze bewoners weleens dingen kapot maken worden die dingen soms weggehaald. Of hun omgeving wordt zo gemaakt dat deze niet kapot kan. Dat klinkt best slim, maar het risico bestaat dat hun huis niet meer gezellig is. Wat ook wel gebeurt is dat hun thuis onhandig is ingedeeld. Dat er bijvoorbeeld veel gangen zijn die de hoek om gaan. Dan kunnen de bewoners niet zien wie eraan komt. Daardoor kunnen ze schrikken of bang zijn om de hoek om te gaan. Dat zijn dingen die misschien maken dat ze zich minder fijn voelen in hun thuis. Architectuur zou dus ook kunnen maken dat de bewoners zich juist niet fijn voelen. Misschien wel dat ze gefrustreerd of bang worden en daardoor agressief worden naar hun omgeving? Intensieve begeleiding Soms is het zo dat mensen met moeilijk verstaanbaar gedrag vastlopen in hun bestaande woning. Dan is het beter voor hen als ze voor een bepaalde tijd verhuizen naar een plek waar ze intensieve begeleiding krijgen en die speciaal gebouwd is voor mensen met moeilijk verstaanbaar gedrag. Een dergelijk gebouw wordt een ‘Very intensive care workhome’ genoemd. Een thuis, waar de bewoners in de buurt kunnen werken en ze in hele kleine groepen intensieve begeleiding krijgen. Hun thuis is ook een werkplek: de werkplek voor hun begeleiders. Het is dus ook belangrijk dat het gebouw die begeleiding ondersteunt. Maar wel zo dat het nog steeds een thuis is voor de bewoners. Wij gaan onderzoek doen in een ‘Very intensive care workhome’ van ’s Heeren Loo in Ermelo. Zo komen wij er hopelijk achter wat mensen met een verstandelijke beperking en moeilijk verstaanbaar gedrag nodig hebben om fijn te wonen. Wellicht kunnen we zo ook ontdekken hoe architectuur daar een bijdrage aan kan leveren. Bestaande informatie Hoe doen we dat onderzoek? Het blijkt dat veel zorginstellingen waar deze mensen wonen al heel veel dingen opschrijven. Zo heeft elke bewoner een dossier waar in staat hoe het met hem of haar gaat. Er wordt opgeschreven als een bewoner agressief is naar een medewerker of als iets gerepareerd moet worden. Er is dus al heel veel kennis aanwezig, die wij kunnen gebruiken in ons onderzoek. Ook de medewerkers en de familieleden weten vaak al heel veel. Daarom hebben wij ze geïnterviewd. Omdat de bewoners zelf soms niet zo goed uit kunnen leggen wat ze fijn vinden of wat ze bang maakt hebben wij een week met hen geleefd. Hierdoor konden we zien hoe ze zich gedragen en ook met hen in gesprek raken, voor zover dat mogelijk was. Daardoor kunnen we ons beter in hen inleven. Verder hebben we ook veel foto’s gemaakt om te zien wat het gebouw zelf te vertellen heeft. We waren bijvoorbeeld op zoek naar sporen van agressie om te kijken of dit steeds op dezelfde plek gebeurt. Kijken vanuit verschillende perspectieven We gaan onderzoeken of, en zo ja hoe, architectuur een bijdrage kan leveren aan de kwaliteit van bestaan van mensen met moeilijk verstaanbaar gedrag. Om deze vraag goed te beantwoorden is het belangrijk om deze vanuit verschillende perspectieven te onderzoeken. Zo is de kans het grootst dat we echt leren te begrijpen wat deze bewoners nodig hebben en hoe architectuur daarbij kan helpen. We kijken natuurlijk vanuit de bewoner, de medewerker, de familie, wat er opgeschreven is, wat het gebouw vertelt en ook wat de architect bedacht heeft. We hebben ook gekeken wat er in het verleden al is onderzocht over dit onderwerp en wat daarover is opgeschreven. Al die perspectieven samen geven een goed beeld en hopelijk een antwoord op onze vraag. Wie heeft hier wat aan? Als we dat antwoord dan hebben heeft dat voor verschillende groepen veel voordelen. De medewerkers, de familie en ook de bewoners kunnen dan beter vertellen wat er nodig is voor een fijn thuis. Dat helpt ook zorginstellingen die nieuwe gebouwen willen bouwen, omdat ze dan weten wat zij aan een architect moeten vragen. Die architect begrijpt hopelijk met ons antwoord ook beter hoe hij of zij een thuis moet ontwerpen voor mensen met een verstandelijke beperking en moeilijk verstaanbaar gedrag. Wie zijn wij? Wij zijn vertegenwoordigers van twee instellingen, namelijk van de Hanzehogeschool in Groningen en ’s Heeren Loo in Ermelo die voor dit project samenwerken. Maar we zijn vooral een groep mensen die de passie hebben om mee te werken aan een betere leefomgeving voor mensen met moeilijk verstaanbaar gedrag. Onze groep bestaat uit: •Berit Ann Roos, architect van het onderzochte gebouw, onderzoeker en directeur van de Academie van Bouwkunst aan de Hanzehogeschool •Mark Mobach, lector Facility Management aan de Hanzehogeschool en zeer geïnteresseerd in de relatie tussen mens en ruimte •Tineke Leussink, medewerker zorg en vastgoed bij ’s Heeren Loo en moeder van een zoon met moeilijk verstaanbaar gedrag. •We werken zeer nauw samen met de Professor architectuur Ann Heylighen van de KU Leuven, een universiteit in België.

Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including powerassisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for the motor activation of people with PIMD in the future.

Ondersteunen van een gezonde leefstijl bij mensen met een verstandelijke beperking

Symposium within the conference

Presenting the results of support needs of DSPs.

Background: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. Method: With semi-structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. Results: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi-levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. Conclusion: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

Background Knowledge concerning the feasibility and effects of progressive resistance training (PRT) for persons with intellectual disabilities and visual impairment who are categorized in Gross Motor Function Classification System (GMFCS) Level 1 is limited. The aim of our study was to evaluate feasibility and effect of PRT on participants' Quadriceps strength and personal goals. Methods Eight Participants followed a PRT program for 10 weeks. Feasibility was determined by percentage of attendance and compliance. The effect of PRT was analyzed with a linear mixed model (p

Background:\ud \ud People with intellectual disabilities (ID) experience more health problems and have different lifestyle change needs, compared with the general population.\ud \ud Aims:\ud \ud To improve lifestyle change interventions for people with ID, this review examined how behaviour change techniques (BCTs) were applied in interventions aimed at physical activity, nutrition or physical activity and nutrition, and described their quality.\ud \ud Methods and procedures:\ud \ud After a broad search and detailed selection process, 45 studies were included in the review. For coding BCTs, the CALO-RE taxonomy was used. To assess the quality of the interventions, the Physiotherapy Evidence Database (PEDro) scale was used. Extracted data included general study characteristics and intervention characteristics.\ud \ud Outcomes and results:\ud \ud All interventions used BCTs, although theory-driven BCTs were rarely used. The most frequently used BCTs were ‘provide information on consequences of behaviour in general’ and ‘plan social support/social change’. Most studies were of low quality and a theoretical framework was often missing.\ud \ud Conclusion and implications:\ud \ud This review shows that BCTs are frequently applied in lifestyle change interventions. To further improve effectiveness, these lifestyle change interventions could benefit from using a theoretical framework, a detailed intervention description and an appropriate and reliable intervention design which is tailored to people with ID.

BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.

Background: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. Method: With semi‐structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. Results: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi‐levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. Conclusion: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

Background: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. Method: With semi‐structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. Results: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi‐levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. Conclusion: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

Background The extent of participation of adults with visual and severe or profound intellectual disabilities (VSPID) is unclear. Aims To explore participation of adults with VSPID and the association between occurrence and importance of aspects of participation. Methods Individual support plans (ISPs) of 40 adults with VSPID were analyzed: selected text fragments were categorized according to 125 previously operationalized statements that had different levels of importance and were divided into seven participation clusters. Results The ISPs contained 2791 text fragments that related to a statement. All clusters were covered: the clusters ‘Experience and discover’ (91.7%), ‘Involvement’ (90%), and ‘Social relations’ (87.5%) were well covered. ‘Inclusion’ (53.6%) and ‘Leisure and recreation’ (57.1%) were mentioned less often. Among the 36 high-importance statements, two related to ‘Inclusion’, ‘Involvement’ and ‘Social Relations’ each, three to ‘Communication and being understood’, and five to ‘Self-management and autonomy’ had at least 30 text fragments. Conclusions The participation domains ‘Experience and discover’, ‘Involvement’, and ‘Social relations’ are well-documented, suggesting that adults with VSPID participate in those areas. However, domains such as ‘inclusion in society’ and ‘leisure in society’ were not documented. This overview of participation offers residential facilities the opportunity to determine in which areas participation can be improved.

Eerste resultaten observatie studie.

Background Promotion of a healthy lifestyle for individuals with mild intellectual disabilities is important. However, the suitability of behaviour change techniques (BCTs) for these individuals is still unclear. Methods A Delphi study was performed using the Coventry, Aberdeen & LOndon - REfined (CALO-RE) taxonomy of BCTs (n = 40). Health professionals (professional caregivers, behavioural scientists, health professionals, intellectual disability physicians) participated in an online survey to determine whether BCTs were suitable or unsuitable. Comments from participants were analysed qualitatively. Results Consensus was reached for 25 BCTs out of 40.The most suitable BCTs were barrier identification (97%), set graded tasks (97%) and reward effort towards behaviour (95%). No significant differences were found for intergroup effects. Conclusion Regardless of their position and education level, health professionals reached consensus about the suitability of BCTs for individuals with mild intellectual disabilities. Increased use of these BCTs could result in more effective promotion of a healthy lifestyle.

Voor de ondersteuning van personen met een visuele en (zeer) ernstige verstandelijke beperking (VEVB) is specifieke expertise nodig, welke overgedragen kan worden door cursussen of directe samenwerking in dagelijkse werksituaties. Dit onderzoek heeft in kaart gebracht wat kenmerken van expertise zijn in de ondersteuning van personen met VEVB, gericht op benadering en inrichting van de fysieke omgeving, en in hoeverre professionals deze expertise expliciet kunnen benoemen. 25 Kenmerken van expertise zijn bepaald door cursuscompetenties aan te vullen met bevindingen uit de literatuur en interviews met acht begeleiders. Het merendeel van de expertisekenmerken op het gebied van benadering en fysieke omgeving wordt genoemd door vijf of minder professionals. Drie van de 25 kenmerken worden niet benoemd. Het expliciet benoemen van de specifieke expertise blijkt lastig. Met de bevindingen en aanbevelingen van dit onderzoek kunnen praktijk en onderzoek verbeteringen aanbrengen aan bewustwording en implementatie van expertise waardoor de kwaliteit van ondersteuning kan verbeteren.

Background Promotion of a healthy lifestyle for people with intellectual disabilities is important; however, the effectiveness of lifestyle change interventions is unclear. Aims This research will examine the effectiveness of lifestyle change interventions for people with intellectual disabilities. Methods and Procedures Randomized controlled trials (RCTs) of lifestyle change interventions for people with intellectual disabilities were included in a systematic review and meta‐analysis. Data on study and intervention characteristics were extracted, as well as data on outcome measures and results. Internal validity of the selected papers was assessed using the Cochrane Collaboration's risk bias tool. Outcomes and Results Eight RCTs were included. Multiple outcome measures were used, whereby outcome measures targeting environmental factors and participation were lacking and personal outcome measures were mostly used by a single study. Risks of bias were found for all studies. Meta‐analysis showed some effectiveness for lifestyle change interventions, and a statistically significant decrease was found for waist circumference. Conclusion and Implications Some effectiveness was found for lifestyle change interventions for people with intellectual disabilities. However, the effects were only statistically significant for waist circumference, so current lifestyle change interventions may not be optimally tailored to meet the needs of people with intellectual disabilities.

Het doel van dit praktijkonderzoek was het bepalen van de toepasbaarheid van de Actigraph om de mate van dagelijkse beweging van kinderen met een verstandelijke beperking te bepalen. De Actigraph bleek goed toepasbaar te zijn.

Inhoud workshop: Samen met de deelnemers van de workshop gaan we ontdekken op welke manier mensen met een verstandelijke beperking gezond kunnen leven. Wat is daarin de rol van de professional? En hoe kunnen we mensen met een verstandelijke beperking hierin voldoende ondersteunen? Welke manieren lijken te werken? En wat doe jij zelf al in de dagelijkse praktijk? Kunnen er ook dingen worden geleerd van andere kwetsbare doelgroepen, geldt voor hen hetzelfde en op dezelfde manier?Indeling van de workshop: We gaan gebruik maken van interactieve methodes om eerst te onderzoeken welk beeld er onder deelnemers heerst, over het ondersteunen van een gezonde leefstijl. Vervolgens zal er kort worden besproken wat er uit onderzoek komt: welke manieren werken om mensen met een verstandelijke beperking gezond te laten leven? Daarna wordt er kennis gemaakt met praktische methoden (technieken) om gezond leven te stimuleren. Met deze technieken gaan deelnemers zelf praktisch aan de slag: welke techniek gebruik je al in de dagelijkse praktijk? Welke lijkt je geschikt om te gaan gebruiken? En hoe ga je daar morgen mee aan de slag?

Background: Health care organizations supporting individuals with intellectual disabilities (IDs) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous intervention components, multiple levels of influence, and the explicit use of theory are factors that are considered to be essential for implementation in practice. A comprehensive written lifestyle policy provides for sustainability of a lifestyle approach. It is unknown to what extent these crucial factors for successful implementation are taken into consideration by health care organizations supporting this population.Aim: To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in health care organizations supporting people with ID.Methods: In this descriptive multiple case study of 9 health care organizations, qualitative data of the lifestyle approaches with accompanying interventions and their components were compiled with a newly developed online inventory form.Results: From 9 health care organizations, 59 interventions were included, of which 31% aimed to improve physical activity, 10% nutrition, and 59% a combination of both. Most (49%) interventions aimed at the educational component and less at daily (19%) and generic activities (16%) and the evaluation component (16%). Most interventions targeted individuals with ID and the professionals whereas social levels were underrepresented. Although 52% of the interventions were structurally embedded, only 10 of the 59 interventions were theory-driven.Conclusion: Health care organizations could improve their lifestyle approaches by using an explicit theoretical basis by expanding the current focus of the interventions that primarily concentrate on their clients and professionals toward also targeting the social and external environment as well as the introduction of a written lifestyle policy. This policy should encompass all interventions and should be the responsibility of those in the organization working with individuals with ID. In conclusion, comprehensive, integrated, and theory-driven approaches at multiple levels should be promoted.

Koninklijke Visio Noord Nederland: expert in een gezonde leefstijl van kinderen en volwassenen met een visuele en verstandelijke beperking!

Background: Healthcare organizations supporting individuals with Intellectual Disabilities (ID) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous intervention components, multiple levels of influence, and the explicit use of theory are factors that are considered to be essential for implementation in practice. A comprehensive written lifestyle policy provides for sustainability of a lifestyle approach. It is unknown to what extent these crucial factors for successful implementation are taken into consideration by healthcare organizations supporting this population. Aim: To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in healthcare organizations supporting people with ID. Methods: In this descriptive multiple case study of nine healthcare organizations, qualitative data of the lifestyle approaches with accompanying interventions and their components were compiled with a newly developed online inventory form. Results: From nine healthcare organizations, 59 interventions were included of which 31% aimed to improve physical activity, 10% nutrition, and 59% a combination of both. Most (49%) interventions aimed at the educational component and less at daily (19%) and generic activities (16%) and the evaluation component (16%). Most interventions targeted individuals with ID and the professionals whereas social levels were underrepresented. Although 52% of the interventions were structurally embedded, only ten out of the 59 interventions were theory-driven. Conclusion: Healthcare organizations could improve their lifestyle approaches by using an explicit theoretical basis by expanding the current focus of the interventions that primarily concentrate on their clients and professionals towards also targeting the social and external environment as well as the introduction of a written lifestyle policy. This policy should encompass all interventions and should be the responsibility of those in the organization working with individuals with ID. In conclusion, comprehensive, integrated, and theory-driven approaches at multiple levels should be promoted.

Het leefstijlgedrag van mensen met een lichte verstandelijke beperking (LVB) is vaak ongezond. Tijdens de workshop wordt kennis gemaakt met technieken om leefstijl te veranderen. Welke technieken zijn geschikt, welke minder? En op welke manier kun je hier direct gebruik van maken?

De krachten gebundeld in Gewoon BijzonderWetenschappelijke onderbouwing voor het ondersteunen van een gezonde leefstijl van mensen met een verstandelijke beperking en vervolgPlenaire presentatie op de Congresparade, 22 mei in het Akousticum in Ede (georganiseerd door Studie Arena)

Background The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. Aims The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. Methods Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. Results A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. Conclusions The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.