Promoting self-determination of persons with severe or profound intellectual disabilities: a systematic review and meta-analysis.

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.

Experienced support at work, team climate and collaboration in teams working with people with mild intellectual disabilities and severe challenging behaviour in residential care: a cross-sectional study.

BACKGROUND: This study explored the perceptions of staff for people with mild intellectual disabilities or borderline intellectual functioning and severe challenging behaviour in relation to the support they received at work from four groups of professionals (i.e. team leaders, managers, psychologists and other staff members). The team climate, such as the workplace having clearly defined goals for staff, was also explored. In addition, the associations between the support from each of the professionals and team climate with the well-being and job satisfaction of staff were examined. We hypothesised that staff would perceive higher levels of support from professionals around a team (i.e. team leaders, managers and psychologists) and a more positive team climate when professionals around a team experience more positive mutual collaboration. METHODS: An online questionnaire about support at work, team climate, well-being and job satisfaction was completed by 201 staff members from 32 teams at 10 residential service organisations. In addition, professionals surrounding these teams rated their mutual collaboration. RESULTS: Both support received at work from all four groups of professionals and team climate showed significant small to moderate positive associations with job satisfaction. Well-being was associated with support from team leaders, psychologists and other staff members in the team, as well as with team climate. We did not find support for the hypotheses that staff would perceive higher levels of support or a more positive team climate when professionals around a team experience more positive mutual collaboration. CONCLUSIONS: This study highlights the importance of investing in staff support and creating a positive team climate for promoting staff well-being and job satisfaction. Implications for future research regarding staff support, team climate and the collaboration between professionals around a team are discussed.

Measuring working alliance and technical alliance from the perspective of healthcare professionals working with people with mild intellectual disabilities: adaptation, factor structure and reliability.

BACKGROUND: The 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. METHOD: Both 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. RESULTS: An 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. CONCLUSION: Both 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.

Stakeholders' perspectives on how to improve the support for persons with an intellectual disability and challenging behaviors: a concept mapping study.

INTRODUCTION: People with an intellectual disability (ID) are at risk of developing challenging behavior. Although previous research provided important insights into how to support people with an ID and challenging behavior, it remains unclear what various stakeholders consider to be the most essential aspects to further improve their support. METHOD: Statements regarding aspects perceived necessary to improve the support to people with an ID and challenging behavior were collected in focus groups. Afterwards participants individually prioritized and clustered these statements, resulting in concept maps for people with an ID, direct support workers, and psychologists. Since only three relatives participated in the entire concept mapping procedure, no concept map could be composed based on their input. RESULTS: Participants generated 200 statements. In the concept map of clients, statements were mentioned regarding relational aspects, providing clarity and structure, characteristics of support staff, and professional attitude of direct support workers. Direct support workers provided statements related to their own personal competencies, the necessity of feeling supported and appreciated, and a physical safe environment. Psychologists provided statements regarding their support for direct support workers, the support for the clients, the perspective on the client, and their role as psychologists. CONCLUSION: The results of this study may be a starting point to foster increased evidence based practice for the support for persons with an ID and challenging behavior. Moreover, it provides opportunities to create care founded on mutual attunement, based on listening to each other's ideas and insight into perspectives and needs of various stakeholders.

Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in the Netherlands.

BACKGROUND: During the first COVID-19 lockdown period, various restrictions led to diminished access to both educational and professional support systems for children with an intellectual disability and their families. The aim of this study was to explore the experiences and needs of parents caring for a child with an intellectual disability during the first lockdown period in the Netherlands. METHOD: Five mothers caring for a child with an intellectual disability participated in this qualitative study. The participants were interviewed using a semi-structured interview guide. The interviews lasted between 26 and 48 min. The interview recordings were transcribed verbatim, and the transcripts were analysed thematically. RESULTS: Three overarching themes emerged: (1) We need to stay healthy, which centres on the mother's urge to protect their child's well-being; (2) We make it work, which provides insight into how the mothers were handling the drastic changes in their family; and (3) My child's and family's place in the world, which focuses on the mothers' experienced position in the world around them. CONCLUSIONS: The current study provides valuable insights into the experiences and needs of mothers caring for a child with an intellectual disability during the COVID-19 pandemic.

Evaluating the self-determination continuum towards seeking support among people with mild to borderline intellectual disabilities.

BACKGROUND: Providing professional support for people with mild to borderline intellectual disabilities (IDs) is supposed to support their autonomous participation in society and, in turn, enhance their well-being and quality of life. However, the motivation for seeking support may differ for people with mild to borderline IDs, varying in the extent to which the person's autonomy is self-determined. The present study tested the association between different types of motivation for seeking support and well-being. METHOD: Adults with mild to borderline IDs (N = 154) participated in a cross-sectional survey. Researchers administered the Self-Regulation Questionnaire - Support - II (SRQ-S-II) and a life satisfaction questionnaire. To determine the test-retest reliability of the SRQ-S-II, 30 participants completed a follow-up questionnaire. RESULTS: The motivations cited by people with mild to borderline IDs for seeking support ranged from amotivation to intrinsic motivation. Multiple regression analysis indicated that the model explained 56.6% of the variance, with intrinsic motivation (ß = 0.361, P < 0.001) and identified motivation (ß = 0.381, P = 0.001) proving to be significant predictors in terms of explaining the highest percentage of variance in well-being. Amotivation (ß = -0.247, P = 0.004) and introjected motivation (ß = -0.145, P = 0.03) contributed significantly to the model with negative beta coefficients. Finally, reliability measures (Cronbach's alphas, MacDonald's omegas and test-retest reliabilities) indicated that all types of motivation for seeking support could be reliably assessed. CONCLUSIONS: The results of the present study showed that people with mild to borderline IDs displayed the full range of types of motivations for seeking support and, moreover, that it was associated with well-being. Studying these motivational states, and increasing our awareness of what motivates this population to seek support, can aid the design of more effective support that respects self-determination and well-being. The SRQ-S-II is thus an important instrument for understanding the role of support in promoting well-being.

Distinguishing subtypes of extrinsic motivation among people with mild to borderline intellectual disability.

BACKGROUND: According to self-determination theory, motivation is ordered in types, including amotivation, extrinsic motivation and intrinsic motivation. Self-determination theory defines four subtypes of extrinsic motivation: external motivation, introjected motivation, identified motivation and integrated motivation. Although it has been argued theoretically that the different types of motivation are universally applicable, Reid et al. () proposed a dichotomy of broad subtypes of extrinsic motivation for people with intellectual disability (ID) due to their cognitive limitations. The current study challenges this proposal by testing whether the four subtypes of extrinsic motivation can be differentiated among people with ID as well. METHOD: The subtypes of extrinsic motivation were measured using two adapted versions of the Self-Regulation Questionnaire, one regarding exercise and one regarding support. In total, 186 adults with mild to borderline ID participated in the study. RESULTS: Results supported the distinction between the four subtypes of extrinsic motivation regarding both exercise and support. In addition, the correlation coefficients supported a quasi-simplex pattern of correlations among the subtypes, indicating that adjacent subtypes were more closely related than non-adjacent subtypes. Moreover, the study showed sufficient Cronbach's alphas and test-retest reliabilities for early stage research. CONCLUSIONS: Overall, the results of the current study provide initial evidence for the universality of the four subtypes of extrinsic motivation across populations with and without ID.

Pretreatment for substance-abusing people with intellectual disabilities: intervening on autonomous motivation for treatment entry.

BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

The human degree of care. Professional loving care for people with a mild intellectual disability: an explorative study.

BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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.