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People with severe or profound intellectual disabilities (IDs) are believed to experience low levels of self-determination, which negatively affects their quality of life. This systematic review describes existing interventions aimed to support self-determination or components thereof and synthesises evidence on the interventions' effects. Eight databases were searched, turning in 76 articles for the final inclusion. The studies included 631 people with severe or profound IDs of whom 81% had multiple disabilities. The studies had quantitative (k = 63), qualitative (k = 7) and mixed study designs (k = 6). Sample sizes ranged from 1 to 95 and a study quality index ranged from 40% to 100%. While many studies included several self-determination components and intervention elements, overall, 53 studies focused on the self-determination components choice making, independence and problem solving. Other studies included increased assistance (k = 14); engagement in meaningful activities and relationships (k = 10); community and societal participation (k = 5); supporting the basic psychological needs autonomy, competence and relatedness (k = 4); individuality and dignity (k = 3); supportive decision-making (k = 2); self-advocacy (k = 2); and motivation (k = 1). Intervention elements included technology (k = 33); multiple-component training packages, goal setting, empowerment tactics and applied behaviour principles (k = 17); training of caretakers (k = 17); changes in policies and living arrangements (k = 9); supporter responsiveness (k = 1); drama therapy and storytelling (k = 1); electrical wheelchair training (k = 1); joint painting procedure (k = 1); youth advocacy project (k = 1); and multiliteracies training (k = 1). Reflecting the heterogeneity of the field, only four studies tested a similar intervention for this population and were eligible for the meta-analysis, which combined showed a small effect size of 2.69. Further research is needed to explore relationships between individuals with severe or profound IDs and their relatives and health care professionals and create supportive environments that meet their basic psychological needs.

BackgroundMothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.MethodsA qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.ResultsTwo overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.ConclusionsFamilies of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.

BackgroundThe establishment of a valuable and meaningful working alliance between people with mild intellectual disabilities (IDs) and healthcare professionals is critically important for improving both the quality of life and impact of therapy for people with mild IDs. Measuring the working alliance as a treatment or support component is therefore of utmost relevance. In light of the increased use of eHealth tools, it is also essential to measure the alliance using these tools, which is referred to as technical alliance. There was a lack of validation of these two measurements for healthcare professionals working with people with mild IDs, which this study sought to address.MethodBoth the validated Working Alliance Inventory – Short Form – MID (WAI-SF-MID) and Technical Alliance Inventory – Short Form – MID (TAI-SF-MID) for general patient populations were adapted for healthcare professionals working with people with mild IDs. A two-step approach was conducted to systematically adapt both measurements with an expert group of healthcare professionals. Confirmatory factor analysis was conducted to test a three-factor structure for both the WAI-SF-MID (N = 199) and the TAI-SF-MID (N = 139), and internal consistency was determined for both scales.ResultsAn acceptable-to-good model fit was found for both the WAI-SF-MID and the TAI-SF-MID; confirmatory factor analysis confirmed a three-factor model for both measurements. Cronbach's alpha and McDonald's omega were excellent for both total scales (≥0.90) and acceptable to good for sub-scales of both versions.ConclusionBoth the WAI-SF-MID and the TAI-SF-MID are promising measurements for determining healthcare professionals' perspective on the (digital) working alliance with people with mild IDs.

BackgroundThe high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary.MethodA three-round Delphi procedure with international experts was undertaken to operationalise self-determination for persons with profound intellectual and multiple disabilities. The quantitative output of Likert scales guided us in finding consensus or differences in the qualitative data. First round qualitative data were analysed thematically.ResultsThe analysis revealed four topics: (1) statements regarding the characteristics of the person with profound intellectual and multiple disabilities, (2) statements regarding characteristics of the social environment, (3) statements regarding the concept of self-determination, and (4) statements regarding the definition and operationalisation of concepts.ConclusionConsensus was found on the assumption that persons with profound intellectual and multiple disabilities can live a self-determined life and on the importance of the interplay between persons with profound intellectual and multiple disabilities and the environment in order to experience self-determination.

To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the 'know-do-gap'. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID.A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines.In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)).Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning.Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files.Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services.The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals.

One tradition in research for explaining aggression and antisocial behavior has focused on social information processing (SIP). Aggression and antisocial behavior have also been studied from the perspective of executive functions (EFs), the higher-order cognitive abilities that affect other cognitive processes, such as social cognitive processes. The main goal of the present study is to provide insight into the relation between EFs and SIP in adolescents with severe behavior problems. Because of the hierarchical relation between EFs and SIP, we examined EFs as predictors of SIP. We hypothesized that, first, focused attention predicts encoding and interpretation, second, inhibition predicts interpretation, response generation, evaluation, and selection, and third, working memory predicts response generation and selection. The participants consisted of 94 respondents living in residential facilities aged 12-20 years, all showing behavior problems in the clinical range according to care staff. EFs were assessed using subtests from the Amsterdam Neuropsychological Test battery. Focused attention was measured by the Flanker task, inhibition by the GoNoGo task, and working memory by the Visual Spatial Sequencing task. SIP was measured by video vignettes and a structured interview. The results indicate that positive evaluation of aggressive responses is predicted by impaired inhibition and selection of aggressive responses by a combination of impaired focused attention and inhibition. It is concluded that different components of EFs as higher-order cognitive abilities affect SIP.

Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID.Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social-psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results.The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy.Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of 'equal' treatment that means reasonable adjustments instead of undifferentiated treatment.

Despite a lack of consensus regarding prevalence rates of substance abuse, people with intellectual disabilities (ID) on average use substances slightly less often than their non-disabled peers. However, their use of substances is more often problematic. Avoidance of treatment is a crucial problem among substance-abusing people with ID. This study tested a motivational intervention to facilitate autonomous motivation (i.e. wanting to change substance abuse because of a sense of free choice and volition) for engaging with a subsequent addiction treatment.A multiple-case experimental design (N = 6) was conducted to measure day-to-day motivation to change substance abuse among individuals with mild ID (N = 3) and borderline level of intellectual functioning (N = 3) in the Netherlands. The participants (five men, one woman) lived in the community (except one, he lived in a residential facility) and abused cannabis, alcohol or hashish. During the intervention phase, the 10-session treatment programme 'Beat the kick' was delivered by an experienced psychologist, based on motivational interviewing techniques adapted for people with mild to borderline ID. Participants completed an adaptive self-reported inventory based on self-determination theory (SDT) two to three times a week during baseline, intervention and 1-month follow-up.The results of five of the six participants (one dropped out) showed that the type of motivation changed from more controlled types of motivation (i.e. external motivation and introjected motivation) at baseline to more autonomous types of motivation after completion of the intervention. In addition, the participants reported a significant increase in overall need satisfaction and autonomy satisfaction and a significant decrease of overall need frustration.The implementation of SDT and motivational interviewing principles in the treatment programme 'Beat the kick' reliably changed the type of motivation. In addition, the experimental effects provide initial proof of the use and applicability of SDT among people with ID.

Recent research addressed the relationship between staff behaviour and challenging behaviour of individuals with an intellectual disability (ID). Consequently, research on interventions aimed at staff is warranted. The present study focused on the effectiveness of a staff training aimed at emotional intelligence and interactions between staff and clients. The effects of the training on emotional intelligence, coping style and emotions of support staff were investigated.Participants were 214 support staff working within residential settings for individuals with ID and challenging behaviour. The experimental group consisted of 76 staff members, 138 staff members participated in two different control groups. A pre-test, post-test, follow-up control group design was used. Effectiveness was assessed using questionnaires addressing emotional intelligence, coping and emotions.Emotional intelligence of the experimental group changed significantly more than that of the two control groups. The experimental group showed an increase in task-oriented coping, whereas one control group did not. The results with regard to emotions were mixed. Follow-up data revealed that effects within the experimental group were still present four months after the training ended.A staff training aimed at emotional intelligence and staff-client interactions is effective in improving emotional intelligence and coping styles of support staff. However, the need for more research aiming at the relationship between staff characteristics, organisational factors and their mediating role in the effectiveness of staff training is emphasised.

A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL.Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network.The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection--especially towards family and professionals--was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support.The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves.

Relationships between support staff and clients with intellectual disability (ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff attitude and staff emotional intelligence on interactive behaviour of one of these relationship partners, being support staff.A total of 158 support staff members completed a questionnaire on staff interactive behaviour for 158 clients with ID and challenging behaviour, as well as two questionnaires on staff interpersonal attitude and emotional intelligence.Confronted with challenging behaviour as opposed to no challenging behaviour, staff reported less friendly, more assertive control and less support-seeking interpersonal behaviour. Also, staff used more proactive thinking and more self-reflection in dealing with challenging behaviour. Staff interpersonal attitude in general, mainly a harsh-dominant-resentful attitude, had a significant influence on most staff interactive behaviours towards an individual client with challenging behaviour. The influence of staff emotional intelligence, specifically intrapersonal abilities, on staff interactive behaviour towards an individual client with challenging behaviour was somewhat limited.This research supports the necessity for training staff in general interpersonal attitudes towards clients as well as training in intrapersonal emotional intelligence, when confronted with challenging behaviour. Future research should focus more on the bidirectional dynamics of staff and client interactions.

Research has shown that care staff are not always able to offer quality care. Commercialisation and market forces within the care sector are often pointed to as an explanation for this shortcoming. In the present study, insight is gained into the possible connections between the commercialisation of care, on the one hand, and the shrinkage of possibilities and motivation to offer professional loving care, on the other hand, from the perspective of care staff working with people with mild intellectual disabilities.Semi-structured qualitative interviews were conducted with 28 care staff working with people with mild intellectual disabilities. Scientific research methods were combined with normative ethical reflection to examine the internal morals of the care staff.According to participating care staff, an affiliation with and recognition of the client form the basis for professional loving care. Care staff recognise that their profession is increasingly being built upon manageability and accountability, and this is making their jobs more difficult.We conclude that care staff perceive the precedence given to the smooth running of production processes over investment in direct contact with clients to be a real threat to the quality of care. Concerns about declining motivation and loss of work satisfaction as a result of the commercialisation of care are only partly acknowledged by care staff. While shrinkage of space for professional loving care is recognised, one can hardly speak of declining motivation.

Client-centred models of care imply that clients should have a collaborative relationship with staff providing support. This study investigates whether dialogues between staff and clients in naturally occurring contexts reflect this collaborative ideal.Nineteen staff members video recorded a social interaction with one of their clients. The topic of the interaction concerned an aspect of their support needs. The recordings were transcribed and analysed using the Initiative Response Analysis designed by Linell et al.Staff were more dominant than clients, albeit the level of asymmetry in the dialogues was relatively small. However, a different pattern of turns was used by staff and clients. Staff asked more direct questions and sometimes neglected meaningful client contributions. Clients, on the other hand, provided more extended turns in response to staff members' questions, thereby helping to maintain the dialogue. However, in a notable minority of communicative turns, the clients failed to link with the staff member's contribution.The interactional patterns found in this study suggest that staff and clients can face difficulties establishing collaborative dialogues on shared topics. Future research should take account of what staff and clients want to achieve in dialogues, along with the nature of their non-verbal communication.

Staff working with clients with intellectual disabilities (ID) who display challenging behaviour may contribute to the continuation of this behaviour, because it causes emotional reactions such as anxiety, anger and annoyance, which may prohibit adequate response behaviour. To enhance staff behaviour and treatment skills a training that aimed at improving emotional intelligence (EQ) was developed.The goal of this study was to assess whether an EQ training in combination with a video-feedback training programme improves emotional intelligence of staff working with clients with ID and challenging behaviour.Participants were 60 staff members working with individuals with ID and challenging behaviour. Thirty-four staff members participated in a 4-month training programme and 26 constituted the control group. A pretest-posttest control group design was used. Effectiveness was assessed by using the Dutch version of the Bar-On EQ-i and the judgments of experts on emotional intelligence.Emotional intelligence of the experimental group changed significantly more than that of the control group. Judgments of experts on emotional intelligence indicated that the change of emotional intelligence of the experimental group improved positively.The positive effect of the training programme on emotional intelligence is consistent with previous research on emotional intelligence and suggests that emotional intelligence of staff working with clients with ID and challenging behaviour can be influenced by training.

Interpersonal staff behaviour is one of the instigating factors associated with challenging behaviour in clients with intellectual disabilities (ID). There are several studies focusing on the influence of intrapersonal staff characteristics - such as beliefs, attributions and emotional reactions - on staff behaviour. Little is known, however, about interpersonal staff behaviour itself. This study describes the development and validation of the Staff-Client Interactive Behaviour Inventory (SCIBI), measuring both intrapersonal and interpersonal staff behaviour in response to challenging behaviour in clients with ID.A total of 292 staff members, employed in residential and community services, completed the SCIBI for 34 clients with ID and challenging behaviour.Confirmatory factor analysis of a seven-factor model - with assertive control, hostile, friendly and support-seeking interpersonal behaviour; proactive thinking; self-reflection; and critical expressed emotion as reliable factors - showed an exact fit to the data, indicating construct validity and reliability of the SCIBI. A series of multilevel regression analyses showed higher age of the client to be negatively associated with assertive control. Job experience, level of education, type and sex of staff predicted interpersonal behaviour. Also, intrapersonal staff behaviour, including critical expressed emotion, proactive thinking and self-reflection, predicted interpersonal behaviour.The SCIBI can be used to identify staff intrapersonal and interpersonal behaviour towards clients with ID and challenging behaviour. Results obtained with the SCIBI can provide new directions for individual client treatment plans and staff training programmes.