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Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families., (©AAIDD.)

Background: It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently lacking., Objective: The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD., Methods: The study used cross-sectional data related to the physical health conditions of children with PIMD (n = 51, aged between 12 and 61 months). Data were collected in Belgium and in the Netherlands through a checklist filled in by primary caregiver(s). Physical health conditions were classified into categories by the 10th revision of the International Classification of Diseases and Related Health Problems (ICD-10) system. The number of physical health conditions and associations between them were analysed. The analysis focused on prevalence rates and associations represented by odds ratios (p < 0.05). A graphical model was estimated to represent dependencies and conditional dependencies between physical health conditions., Results: We found a mean of 3.8 (range 1-8, SD 1.9) physical health conditions per child. Most of the physical health conditions were found in the ICD-10 chapter 'Nervous System', with hypotonia as the most frequent at 70.6%. Five significant large associations were found between spasticity-contractures (OR 9.54); circulatory system-contractures (OR 7.50); scoliosis-contractures (OR 10.25); hearing impairments-skin problems (OR 58.20) and obstipation-hypotonia (OR 19.98)., Conclusion: This study shows that at a young age, multiple physical health conditions are present in children with PIMD. In addition, we found five associations between physical health conditions., (© 2024 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Background: For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity., Method: A Delphi study with family members and healthcare professionals was conducted., Results: Results showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness., Conclusions: The current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument., (© 2023 John Wiley & Sons Ltd.)

Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the psychometric characteristics of the CPADULT., Method: Caregivers (n = 47; 77% female, 23% male) of individuals with severe disabilities who are non-ambulatory completed the questionnaire. Internal consistency, test-retest reliability and construct validity were analysed., Results: Internal consistency was adequate with Cronbach's alpha values from 0.75 to 0.95. Test-retest reliability was good, as intraclass correlation coefficient of the total score was 0.84 (domains: 0.61-0.89). Construct validity was confirmed with significant differences between subgroups of motor or intellectual abilities., Conclusion: The CPADULT has sufficient reliability and validity as a proxy measure of health-related quality of life for adults with severe disabilities who are non-ambulatory., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: There are no psychometrically validated instruments available to measure motor skills of children with profound intellectual and multiple disabilities (PIMD). In this study, the construct validity and reliability (Rho) of the Motor Development List for children with PIMD (MDL-PIMD), a proxy-reported measure, was investigated., Methods: The MDL-PIMD was filled in by parents of 52 children with PIMD every six months over a period of two years. The items of the original MDL were categorised into subscales. A Mokken scale analysis for polytomous items was conducted for five subscales (Posture, Locomotion, Reaching, Grabbing and Facial Actions)., Results: Several items were deleted to improve scalability. All scales showed good scalability (range scale H .66-.78) and reliability (range Rho .92-.98)., Conclusions: The MDL-PIMD seems to be a valid and reliable instrument for assessing the motor skills of children with PIMD, although more research is needed to confirm the factorial structure.

Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume., Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire., Results: Most participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden., Conclusions: Adult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity., Method: The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT)., Results: The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81-0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude., Conclusion: The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.

Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals., Aim: This Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them., Methods: A two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively., Results: In the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation' and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain 'Behavioural/Emotional' were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain 'Defecation' n = 5; domain 'Physical features n = 3). Within the domain 'Behavioural/Emotional', consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered 'generic' and <70% as 'personal'. Symptoms mentioned in the text boxes were used to operationalize categories., Discussion and Conclusion: It was possible to compile a list of generic criteria related to the domains 'Defecation' (n = 5) and 'Physical features' (n = 3) supplemented with generic symptoms related to the domain 'Behavioural/Emotional' (n = 5). We propose using both generic as well as personal criteria and symptoms resulting in a personal profile for an individual with SPIMD. Based on the current results, we recommend follow-up research to develop a screening tool to be used by relatives and professional caregivers, and a definition of constipation. This may support reciprocal collaboration and lead to timely identification of constipation in people with SPIMD., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD., Methods: We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement)., Results: The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n = 9: .30-1.00; n = 3: 85%-100%)., Discussion: Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child's pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which needs are age-specific. To learn more about these families' support needs, 20 parents of a child with PIMD aged 3-26 years were interviewed about their family's support needs through interviews with open-ended questions. Interview transcripts were qualitatively analysed to identify support needs in five domains (child with PIMD, family, environment, services, and system). Various (age-specific) support needs were identified. The findings of this study can help health professionals and policy makers to improve the support of families with a child with PIMD by attuning the support to these families' specific needs., Competing Interests: No potential conflict of interest was reported by the authors. Ethical statement Ethical permission for this study was granted by the ethical committee of the department of Pedagogical and Educational Sciences (Ethische Commissie PEDON) after independent review., (© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

Background: It is difficult to diagnose constipation for people with severe or profound intellectual disabilities. Definitions for this are ambiguous, and the symptoms and signs are often unnoticed. The aim of this study is to identify clear definitions of constipation for people with different levels of intellectual disabilities and to identify signs and symptoms., Method: Guided by the PRISMA statement, a systematic review of the literature was conducted within electronic databases MEDLINE, Embase, CINAHL, Cochrane, and PsycINFO. Definitions, signs, and symptoms were extracted and the quality of definitions was assessed., Results: In total, 24 studies were included. Quality of definitions ranged from poor to good quality. Standard and referenced definitions were used in ten studies, a self-composed definition was employed in eleven studies; and three studies did not refer to a source of the definition. The self-composed definitions had not been evaluated after being used for the target group, and no scientific substantiation was available. A broad range of signs and symptoms were described., Conclusions: No substantiated definition has been ascertained for constipation for people with severe or profound intellectual disabilities. Further research will be necessary to identify which signs and symptoms are important for defining constipation in this target group., Competing Interests: The authors declare no conflict of interest., (© 2022 The Author(s).)

Introduction: Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population., Methods: Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix., Results: Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported., Conclusion: Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D., Competing Interests: No potential conflict of interest was reported by the author(s)., (© 2022 The Author(s). Published with license by Taylor & Francis Group, LLC.)

Individuals with intellectual disability (ID) need support from direct support professionals (DSPs) to engage in a healthy lifestyle. However, literature shows DSPs feel insufficiently equipped to support a healthy lifestyle. Therefore, the aim of this study is to develop a theory-based program for DSPs to support physical activity and healthy nutrition for people with moderate to profound levels of ID, and to design its evaluation. The Intervention Mapping Protocol (IM) was followed to develop a theory-based program for DSPs. The program evaluation consists of process and feasibility evaluations. This study provided a theory-based program consisting of a training and education section with online and face-to-face components to support DSPs in promoting health for people with ID., (©AAIDD.)

Background: There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary outcomes of a theory-based training and education program for DSPs to learn how to support these individuals., Methods: The program consisting of e-learning, three in-person sessions, and three assignments was implemented. The implementation process was evaluated with a mixed method design with the following components: preparation phase, implementation phase, and the outcomes. These components were measured with project notes, questionnaires, interviews, reflections, assignments, food diaries, Actigraph/Actiwatch, and an inventory of daily activities., Results: Regarding the preparation phase, enough potential participants met the inclusion criteria and the time to recruit the participants was 9 months. The program was implemented in four (residential) facilities and involved individuals with moderate to profound ID (n = 24) and DSPs (n = 32). The e-learning was completed by 81% of the DSPs, 72-88% attended the in-person sessions, and 34-47% completed the assignments. Overall, the fidelity of the program was good. DSPs would recommend the program, although they were either negative or positive about the time investment. Mutual agreement on expectations were important for the acceptability and suitability of the program. For the outcomes, the goals of the program were achieved, and the attitudes of DSPs towards a healthy lifestyle were improved after 3 months of the program (nutrition: p = < 0.01; physical activity: p = 0.04). A statistically significant improvement was found for food intake of people with ID (p = 0.047); for physical activity, no statistically significant differences were determined., Conclusions: The theory-based program consisting of a training and education section for DSPs to support a healthy lifestyle for people with moderate to profound ID was feasible to implement and, despite some barriers regarding time capacity and mutual expectations, it delivered positive changes in both persons with moderate to profound ID and DSPs. Thus, the program is a promising intervention to support DSPs., (© 2021. The Author(s).)

Background: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD., Method: Professionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature search to find information about the psychometric properties of the instruments that were identified in the survey., Results: Of the participants, 78.1% used assessments that were not developed for people with PIMD. Documentation on psychometric properties was found for 8 out of 116 instruments., Conclusions: Most of the instruments in use were not designed for people with PIMD, and information about their quality is lacking. Guidelines are needed regarding the use and development of assessment methods for people with PIMD., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Research about the psychometric properties of the Behavioural Appraisal Scales (BAS) in people with profound intellectual and multiple disabilities (PIMD) is limited. This study evaluates invariance in factor structure, item bias and convergent validity of the BAS. Methods: Data on the BAS from two studies ( n  = 25; n  = 52) were analysed using the oblique multiple group method. The scale structure and item ordering were compared in the two groups. Convergent validity was assessed by correlating scores on the BAS with scores on two other instruments. Results: Of all items, 16-18% correlated stronger with other subscales of the BAS than the subscale they were originally assigned to. Scale structure and order of difficulty differed between groups. Correlations between the BAS and two other instruments varied from low to excellent ( r  = .48-.85). Conclusions: The results support the construct validity of the BAS. Removing, reassigning and adapting items may enhance construct validity.

Background: Behaviour change techniques (BCTs) can be employed to support a healthy lifestyle for people with intellectual disabilities. The aim of this study is to determine whether and which BCTs are used by direct support professionals (DSPs) for supporting healthy lifestyle behaviour of people with moderate to profound intellectual disabilities., Method: Direct support professionals (n = 18) were observed in their daily work using audio-visual recordings. To code BCTs, the Coventry Aberdeen London Refined (CALO-RE-NL) taxonomy was employed., Results: Direct support professionals used 33 BCTs out of 42. The most used BCTs were as follows: 'feedback on performance', 'instructions on how to perform the behaviour', 'doing together', 'rewards on successful behaviour', 'reward effort towards behaviour', 'DSP changes environment', 'graded tasks', 'prompt practice' and 'model/demonstrate behaviour'., Conclusions: Although a variety of BCTs is used by DSPs in their support of people with moderate to profound intellectual disabilities when facilitating healthy lifestyle behaviour, they rely on nine of them., (© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group., Method: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument. A three-step process was used: focus groups, e-survey and interviews., Results: In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales., Conclusions: This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: The support of people with profound intellectual and multiple disabilities (PIMD) rarely focused on motor activity, which might have negative consequences for the quality of life of these people. Evidence-based motor activity programs that present individually tailored and structural motor activity for these people are, regretfully, lacking. This study developed such a program for these people and evaluated the implementation process., Methods: The motor activity program is developed in accordance with the theoretical premises of the educational program and consists of four methodological steps in which the content is individually filled with: motor activity structurally embedded within the activities of daily living, and 3-5 motor activities aimed at a specific goal, which is evaluated. Program delivery consisted of a manual, explanation to the teams, and coaching of one contact person per participant (n = 9). Process evaluation included the delivered fidelity, dose, reach, and adaptations made during the program. In addition, mechanisms of impact and the influence of contextual factors were evaluated. Data collection included researcher logbooks, individual program content, and staff reports., Results: The intended fidelity, dose, and reach were not obtained in most participants. Content has been made explicit for seven participants, but only in one participant all critical steps in implementation were performed as intended, though later in time. In three participants, previously offered motor activities were described within the weekly program, but without all activities having a clear link with the goal set. It is showed that the core elements of the program were affected with the conceived implementation plan. The time schedule, critical elements in implementation and program content were influenced by a lack of conditions such as professionals' motivation and responsibility, methodical working, interdisciplinarity and continuity in staff., Conclusions: The results suggest that the implementation might be improved in case more attention is paid to the organizational conditions and implementation structure. The findings led to substantial changes in the implementation strategy. This study underlines the importance of process evaluation prior to testing for effectiveness., Trial Registration: The (overarching) study was registered at the Netherlands Trial Register (number 6627) on February 10, 2017: https://www.trialregister.nl/trial/6449 .

Background: We investigated the effects of the "Care for Participation+" (CFP+) intervention on direct support professionals' (DSPs') attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID)., Methods: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs' attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs' written profiles of adults with VSPID., Results: CPP+ and the Participation Mind Map control group showed a positive trend for the "leisure/recreation," "social relations," and "ability to act" APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls., Conclusion: CFP+ had positive effects on DSPs' attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+., (© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Valid measures to assess either small or assisted performed movements of people with profound intellectual and multiple disabilities (PIMD) are required. We analysed the construct validity of the Actiwatch-2 to assess movement in people with PIMD., Method: Twenty-two persons with PIMD were video recorded while wearing an Actiwatch-2. We used 15s-partial-interval recording to record upper body movement, body position and activity situation. Multilevel analyses were used to evaluate if the Actiwatch-2, based on produced counts, could detect changes in these factors., Results: The presence versus absence of upper body movement and an activity situation in which participants were involved versus not involved resulted in significantly higher counts, with a large variety in predicted counts between participants. No relationship between body position and counts was found., Conclusions: The Actiwatch-2 seems able to assess obvious upper body movement in people with PIMD, and whether there is involvement in an activity situation., (© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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.

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: Physical-activity approaches for people with intellectual disabilities (ID) are more likely to be effective and sustainable if they also target direct support professionals' behaviour. However, no tools to measure the behavioural determinants for direct support professionals are available as of yet. This study aims to construct a self-report tool to measure direct support professionals' behavioural determinants in physical-activity support for people with ID and to analyse its psychometric properties., Methods: The tools' sub-scales and items corresponded with a proposed conceptual model. A pilot study was carried out to investigate and improve content validity. Construct validity and measurement precision were examined using item response theory models with data from a convenience sample of 247 direct support professionals in the support of people with ID., Results: Results supported the three theory-driven behaviour scales and indicated reasonable to good construct validity. The marginal reliability for the scales ranged from 0.84 to 0.87, and adequate measurement precision along the latent continua was found., Conclusions: The tool appears to be promising for measuring the behavioural determinants of direct support professionals for the physical-activity support of people with ID and has potential as a tool for identifying areas to focus on for interventions and policies in the future., (© 2019 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Direct support professionals play an important role in facilitating physical activity support for people with intellectual disabilities (ID). This study examined how the characteristics of people with ID and the characteristics of direct support professionals are related to the professionals' behaviour when supporting people with ID in physical activity., Methods: A cross-sectional approach was used. Direct support professionals (n = 217) who support people with ID completed a self-report questionnaire, which aimed to measure the components that produced behaviour when providing physical activity support for people with ID. Associations with the characteristics of people with ID and the characteristics of the professionals were analysed using multivariate linear regression models., Results: The results demonstrate that the professionals' characteristics - such as age, workplace and training - were related to the variance in the components that theoretically produced the direct support professionals' behaviour. The characteristics of the people with ID did not contribute to the variance in the direct support professionals' behaviour., Conclusions: The findings suggest that professional characteristics are the dominant reasons for the differences observed in the capability, opportunity and motivation of direct support professionals to provide physical activity support. This study also underscores the need for integrated training programmes to help direct support professionals promote physical activity in people with ID., (© 2019 The Authors Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.)

Background: Dysphagia is potentially life-threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The "Signaleringslijst Verslikken" (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD., Method: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test., Results: The proportion of agreement was 0.59 (95% CI 0.43-0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001)., Conclusions: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD., (© 2019 John Wiley & Sons Ltd.)

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., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background/introduction: In this study, we investigated intellectual disability support professionals' knowledge and expectations towards effects of psychotropic drug use on behaviour and drug use in their clients, because shortcomings may lead to misinterpretations of behavioural symptoms and inappropriate drug use., Methods: Two self-designed questionnaires were used to measure the knowledge and expectations of 194 support professionals in 14 residential facilities regarding psychotropic drug use and effects of antipsychotics on behavioural, cognitive and mental functioning of people with intellectual disability. The psychometric properties of both questionnaires were adequate., Results: A majority of the professionals had unrealistic expectations regarding the positive effects of antipsychotics on cognitive and behavioural functioning, and 94% scored below the cut-off scores regarding knowledge; 60% indicated they needed education and training., Conclusions: To achieve sufficient collaboration of intellectual disability support professionals in reducing inappropriate psychotropic drug use of clients, vocational educational training is needed., (© 2017 John Wiley & Sons Ltd.)

Background: People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention, specifically detection and treatment of physical health problems at an early stage and prevention of secondary complications., Aim: The aim of this study was to explore patterns of multimorbidity in individuals with SPIMD., Methods and Procedures: Data from medical records and care plans on reported physical health problems of 99 adults with SPIMD were analysed. To explore the co-occurrence of physical health problems, cross tabulations and a 5-set Venn Diagram were used., Outcomes and Results: The most common combination of two physical health problems comprise the most prevalent physical health problems, which included visual impairment, constipation, epilepsy, spasticity, and scoliosis. These five issues occurred as a multimorbidity combination in 37% of the participants. In 56% of the participants a multimorbidity combination of four health problems emerged, namely constipation, visual impairment, epilepsy, and spasticity., Conclusions and Implications: People experiencing SPIMD have interrelated health problems. As a consequence, a broad variety of potential interactions between physical health problems and their treatments may occur. Identifying multimorbidity patterns can provide guidance for accurate monitoring of persistent health problems and, early detection of secondary complications. However, the results require confirmation with larger samples in further studies., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Background: Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children., Method: Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use., Results: There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children., Conclusions: This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision., (© 2017 John Wiley & Sons Ltd.)