Intervention effects on professionals' attitudes towards the participation of adults with visual and severe or profound intellectual disabilities.

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+.

Improving the participation of adults with visual and severe or profound intellectual disabilities: a process evaluation of a new intervention.

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.

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

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.

Participation of adults with visual and severe or profound intellectual disabilities: Analysis of individual support plans.

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.

Difference or delay? A comparison of Bayley-III Cognition item scores of young children with and without developmental disabilities.

The "difference or delay paradigm" focuses on the question of whether children with developmental disabilities (DD) develop in a way that is only delayed, compared to typically developing children, or also qualitatively different. The current study aimed to examine whether qualitative differences exist in cognitive development of young children with and without DD on the basis of item scores on the Dutch Bayley-III Cognition scale. Differential item functioning was identified for 15 of the 91 items. The presence of DD was related to a higher number of Guttman errors, hinting at more deviation in the order of skill development. An interaction between group (i.e., with or without DD) and developmental quotient appeared to predict the number of Guttman errors. DD was related to a higher number of Guttman errors for the whole range of developmental quotients; children with DD with a small developmental quotient had the highest number. Combined, the results mean that qualitative differences in development are not to be excluded, especially in cases of severe developmental disabilities. When using the Bayley-III in daily practice, the possibility needs to be taken into account that the instruments' assumption of a fixed order in skill development does not hold.

Understanding low levels of physical activity in people with intellectual disabilities: A systematic review to identify barriers and facilitators.

BACKGROUND: People with intellectual disabilities (ID) undertake extremely low levels of physical activity. AIMS: To enhance understanding concerning low levels of physical activity in people with ID, this study has three aims: (1) to identify barriers to and facilitators of physical activity in people with ID; (2) to examine differences in barriers and facilitators between levels of ID (mild, moderate, severe, and profound); (3) to examine differences in barriers and facilitators between various stakeholder groups. METHODS AND PROCEDURES: A systematic search was performed using the following databases from the year 1990: MEDLINE, ERIC, and PsycINFO. The studies included were peer reviewed, available as full text, and written in English, addressing barriers to and facilitators of physical activity in people with ID. The quality of the studies was assessed using existing critical review forms. All studies were subjected to qualitative synthesis to identify and compare barriers and facilitators. OUTCOMES AND RESULTS: In all, 24 studies were retrieved, describing 14 personal and 23 environmental barriers and/or facilitators. The quality of the studies varied, particularly for qualitative studies. Only two studies included people with severe or profound ID. Stakeholder groups tend to identify barriers outside their own responsibility. CONCLUSIONS AND IMPLICATIONS: Results reveal a broad range of barriers and facilitators, but not for people with more severe ID. Further research should also examine these factors among stakeholders responsible for providing support.

Exploring parental behavior and child interactive engagement: A study on children with a significant cognitive and motor developmental delay.

BACKGROUND AND AIMS: Parenting factors are one of the most striking gaps in the current scientific literature on the development of young children with significant cognitive and motor disabilities. We aim to explore the characteristics of, and the association between, parental behavior and children's interactive engagement within this target group. METHODS AND PROCEDURES: Twenty-five parent-child dyads (with children aged 6-59 months) were video-taped during a 15-min unstructured play situation. Parents were also asked to complete the Parental Behavior Scale for toddlers. The video-taped observations were scored using the Child and Maternal Behavior Rating Scales. OUTCOMES AND RESULTS: Low levels of parental discipline and child initiation were found. Parental responsivity was positively related to child attention and initiation. CONCLUSIONS AND IMPLICATIONS: Compared to children with no or other levels of disabilities, this target group exhibits large differences in frequency levels and, to a lesser extent, the concrete operationalization of parenting domains. Further, this study confirms the importance of sensitive responsivity as the primary variable in parenting research.

A power-assisted exercise intervention in people with profound intellectual and multiple disabilities living in a residential facility: a pilot randomised controlled trial.

OBJECTIVE: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention. DESIGN: Pilot randomised controlled trial. SETTING: A large-scale twenty-four-hour residential facility in the Netherlands. SUBJECTS: Thirty-seven persons with profound intellectual and multiple disabilities. INTERVENTION: Participants in the intervention group received a power-assisted exercise intervention three times a week for thirty minutes over a twenty-week period. Participants in the control group received care as usual. MAIN MEASURES: Trial feasibility by recruitment process and outcomes completion rates; intervention feasibility by programme compliance rates; potential outcomes by functional abilities, alertness, body composition, muscle tone, oxygen saturation, cardiovascular fitness and quality of life. RESULTS: Thirty-seven participants were recruited ( M age = 32.1, SD = 14.6) and were randomly allocated to intervention ( n = 19) and control ( n = 18) groups. Programme compliance rates ranged from 54.2% to 97.7% with a mean (SD) of 81.5% (13.4). Oxygen saturation significantly increased in the intervention group. Standardised effect sizes on the difference between groups in outcome varied between 0.02 and 0.62. CONCLUSIONS: The power-assisted exercise intervention and the trial design were feasible and acceptable to people with profound intellectual and multiple disabilities living in a residential facility. This pilot study suggests that the intervention improves oxygen saturation, but further implementation with the aim of improving other outcomes should be considered with caution.

Efforts to increase social contact in persons with profound intellectual and multiple disabilities: Analysing individual support plans in the Netherlands.

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.

Parents' experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities.

BACKGROUND: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. METHOD: A multiple case study ( n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months. RESULTS: The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child's direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers' experiences were positive. CONCLUSION: Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.

The interrelationships between motor, cognitive, and language development in children with and without intellectual and developmental disabilities.

It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabilities (IDD) and compared them to those in children without IDD. In addition, we investigated whether these relationships differ between children with different levels of cognitive delay. Seventy-seven children with IDD (calendar age between 1;0 and 9;10 years; mean developmental age: 1;8 years) and 130 typically developing children (calendar age between 0;3 and 3;6 years; mean developmental age: 1;10 years) were tested with the Dutch Bayley Scales of Infant and Toddler Development, Third Edition, which assesses development across three domains using five subscales: fine motor development, gross motor development (motor), cognition (cognitive), receptive communication, and expressive communication (language). Results showed that correlations between the motor, cognitive, and language domains were strong, namely .61 to .94 in children with IDD and weak to strong, namely .24 to .56 in children without IDD. Furthermore, the correlations showed a tendency to increase with the severity of IDD. It can be concluded that both fine and gross motor development are more strongly associated with cognition, and consequently language, in children with IDD than in children without IDD. The findings of this study emphasize the importance of early interventions that boost both motor and cognitive development, and suggest that such interventions will also enhance language development.

Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities.

BACKGROUND: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. METHOD: Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. RESULTS: Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. CONCLUSIONS: Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD.

Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy.

PURPOSE: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP). METHODS: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV-V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test-retest and inter-rater reliability. Known-groups validity of the CPCHILD-DV was assessed by comparing mean scores of clinically distinct subgroups and convergent validity by correlating the CPCHILD-DV with the TNO-AZL Preschool Children Quality of Life (TAPQOL). RESULTS: The mean CPCHILD-DV total score was 52.0 (SD11.5). Test-retest reliability of the total score as assessed by intraclass correlations (ICC) was 0.73 (domains: 0.55-0.80). For the inter-rater reliability the ICC was 0.64 (domains: 0.58-0.90); the Cronbach's alpha's ranged from 0.60 to 0.95. The CPCHILD score could differentiate between GMFCS levels and between subgroups of cognitive level in the domain "communication and social interaction". There were moderate significant correlations (range r(s): 0.31-0.50) between sections of CPCHILD-DV and TAPQOL. CONCLUSIONS: The CPCHILD-DV has sufficient reliability and validity as a proxy measure of health status and well-being of non-ambulatory children with CP.

A systematic review of the effects of motor interventions to improve motor, cognitive, and/or social functioning in people with severe or profound intellectual disabilities.

While it is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor interventions designed to improve motor, cognitive, and/or social outcomes in people with S-PID. A systematic review of empirical studies published between 1982 and 2012 was conducted using four databases (MEDLINE, PsycINFO, ERIC, and CINAHL). Data were extracted regarding the aim of the study, study design, sample characteristics, theoretical framework, intervention, the measurement tools utilized, and outcomes. Of 295 articles reviewed, 46 met our inclusion criteria and covered 45 different studies. Forty articles used single-subject designs and five used a group design. The majority of the articles focused on behavioural techniques with (n=21) or without (n=15) assistive technology. Theoretical frameworks were explicitly reported in nine (20%) of the 45 articles. Thirty-eight articles reported improvement in basic motor skills and eight articles reported improvement in recreational or more specialist motor skills. None of the articles reported negative effects due to motor interventions. Further research is required to determine which motor interventions are the most effective in improving motor outcomes and/or cognitive and social outcomes, and on the longer term effects of these interventions in people with S-PID.

Family-centredness of professionals who support people with profound intellectual and multiple disabilities: validation of the Dutch 'Measure of Processes of Care for Service Providers' (MPOC-SP-PIMD).

A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD.

Learn and apply: using multi-sensory storytelling to gather knowledge about preferences and abilities of children with profound intellectual and multiple disabilities--three case studies.

Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.

Learning autonomy in two or three steps: linking open-ended development, authority, and agency to motivation.

In this paper we connect open-ended development, authority, agency, and motivation through (1) an analysis of the demands of existing in a complex world and (2) environmental appraisal in terms of affordance content and the complexity to select appropriate behavior. We do this by identifying a coherent core from a wide range of contributing fields. Open-ended development is a structured three-step process in which the agent first learns to master the body and then aims to make the mind into a reliable tool. Preconditioned on success in step two, step three aims to effectively co-create an optimal living environment. We argue that these steps correspond to right-left-right hemispheric dominance, where the left hemisphere specializes in control and the right hemisphere in exploration. Control (e.g., problem solving) requires a closed and stable world that must be maintained by external authorities or, in step three, by the right hemisphere acting as internal authority. The three-step progression therefore corresponds to increasing autonomy and agency. Depending on how we appraise the environment, we formulate four qualitatively different motivational states: submission, control, exploration, and consolidation. Each of these four motivational states has associated reward signals of which the last three-successful control, discovery of novelty, and establishing new relations-form an open-ended development loop that, the more it is executed, helps the agent to become progressively more agentic and more able to co-create a pleasant-to-live-in world. We conclude that for autonomy to arise, the agent must exist in a (broad) transition region between order and disorder in which both danger and opportunity (and with that open-ended development and motivation) are defined. We conclude that a research agenda for artificial cognitive system research should include open-ended development through intrinsic motivations and ascribing more prominence to right hemispheric strengths.

Physiological measurements as validation of alertness observations: an exploratory case study of three individuals with profound intellectual and multiple disabilities.

Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness observations. Measurements of five physiological parameters were compared with video observations of three individuals with profound intellectual and multiple disabilities. Because our first findings are broadly in line with those of studies involving individuals in the general population, we hypothesize that physiological measurements can be used to validate alertness observations in individuals with profound intellectual and multiple disabilities. Future studies are needed to compensate for the limitations of this study and to answer ensuing questions.

Multi-sensory storytelling for persons with profound intellectual and multiple disabilities: an analysis of the development, content and application in practice.

BACKGROUND: Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in practice of the MSST books in persons with profound intellectual and multiple disabilities (PIMD). MATERIALS AND METHODS: Forty-nine persons with PIMD and their direct support person participated. We analysed if the books are constructed and read according to guidelines. Content and used stimuli were related to age. RESULTS: Of the books 84% were constructed according to guidelines. In just 1.3% of the sessions, the story was read as intended. Regarding content, 67.4% of the stories focused on daily life excursions. Tactile stimuli were used most. Age related to stimuli choice, but not to content. CONCLUSIONS: Although most books were properly constructed, guidelines were barely followed during reading which may negatively influence the effectiveness.

Pain assessment in people with profound intellectual and multiple disabilities; a pilot study into the use of the Pain Behaviour Checklist in everyday practice.

Because of their physical and general health problems, people with a combination of profound intellectual and severe or profound motor disabilities (PIMD) are at risk of pain-related medical conditions. They are fully dependent on support professionals for the detection and accurate interpretation of nonverbal pain behaviour. These professionals can use a recently developed instrument, the Pain Behaviour Checklist (PBC), to assess pain in post-operative situations for children with PIMD. It is not yet known whether this instrument can also be used to identify pain in both children and adults in daily care situations. The aim of this pilot study was therefore threefold: to establish (1) whether the PBC can be used to identify pain in day-to-day situations in people with PIMD, (2) which behaviours are most frequently identified as indices of pain behaviour, and (3) whether there is a difference in pain-related behaviour between children and adults. In total, 32 people with PIMD participated in the study (16 children with a mean age of 10.4 years and 16 adults with a mean age of 46.7 years). Each participant was videotaped twice during a planned care moment in which we assumed that pain was prevalent. During each observation, pain was scored by the direct support professional using the Visual Analogue Scale (VAS) and by two trained independent observers using the PBC. The reliability (both intrarater and interrater) of the PBC was analysed by calculating Spearman's rho. Validity was analysed by correlating the PBC with the VAS scores; Phi was calculated for both children and adults. Finally, positive scores on each separate item of the PBC were analysed in adults and children in order to discover possible differences between pain behaviour in each group. The interrater reliability of the PBC is .63 (p<.05) and the intrarater reliability was .88 (p<.05). Phi, as a measure of the agreement on pain/no pain between the VAS and the PBC, is .75 (p<.05) in children and .28 (p<.05) in adults. Adults were more likely to exhibit the pain-related behaviours of 'tense face', 'deeper naso-labial furrow' and 'moaning and groaning', whereas children made more 'penetrating sounds of restlessness'. Based on this pilot study, we conclude that the PCB's reliability when used in daily practice with people with PIMD is satisfactory. However, although the validity is good for children, it appears insufficient for adults. It seems that children display different pain-related behaviours than adults. More research is needed into the proper assessment of pain in people with PIMD, especially adults, by health care professionals in daily practice. We also need a better understanding of the extent to which the knowledge and experience of care professionals play a role in detecting (chronic) pain behaviour in both children and adults and of how people with PIMD cope with pain.