Search

Background: This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Method: Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results: Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Conclusion: Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.

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: The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Methods: Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Results: Implementation interventions were widely used in which clients' perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT's social mechanisms' Coherence, Cognitive Participation and Collective Action. Conclusions: The emphasis on consensus and clients' perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care.

Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

Background: One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods: A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. Results: All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. Conclusions: There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future.

This study reports the findings from a Dutch study, exploring care workers' knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Three themes were derived from the data: (1) The clients' online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Care workers have limited knowledge of clients' online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic significantly affected families who have children with intellectual disabilities (ID). Our aim was to explore the pandemic's impact on Dutch migrant families who have children with ID, by interviewing these families' support workers. A descriptive qualitative methodology was employed, which resulted in semi-structured telephone interviews with 34 support workers. We selected interview transcripts that pertained to 27 Dutch migrant families who have children with ID and identified themes and subthemes using thematic analysis. Two main themes related to the pandemic emerged: (1) Work of support workers during the COVID-19 pandemic and (2) Impact of the COVID-19 pandemic upon migrant families who have children with ID. The present study demonstrates that support workers particularly struggled to stay in touch with migrant families who have children with ID during the COVID-19 pandemic. Therefore, support workers should tailor their support to the needs of migrant families. [ABSTRACT FROM AUTHOR]

Background In this study we evaluated the long-term impact of a project in which families were individually supported in the realisation of personal future plans in the city of Almere, the Netherlands (2004–2006). Method We used fourth-generation evaluation principles. Data collection consisted of semistructured interviews with family members and adults with intellectual disability as well as focus groups with both groups. Photovoice was used as a strategy to engage 4 young adults with Down syndrome in the research. The results of the photovoice were presented to the community at a town hall meeting. The data were coded and common themes were created. Results The majority of the participants evaluated the project as having a positive impact on their quality of life. Conclusions The results of the study support individual future planning for young adults with intellectual disability and their families in the transition to adulthood. [ABSTRACT FROM AUTHOR]

Background Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual disability teach sex education or not. An online questionnaire was therefore constructed to assess the important factors associated with teaching sex education. Results Of the 163 staff members who completed the questionnaire, 39% provided sex education. Results show that it was mainly provided reactively. The main factor was the perceived social norm towards teaching sex education. Conclusions If we want paid care staff to teach sex education reactively, then we need to focus on changing the perceived social norm. However, if we want them to teach sex education proactively, a new needs assessment should be conducted in order to identify the important factors to motivate and enable them to provide sex education. [ABSTRACT FROM AUTHOR]

Background Raising children with borderline to mild intellectual disability (BMID) and psychosocial problems may yield a strong need for support among parents, but evidence for this is lacking. The aim of this study was to investigate the prevalence of need for parenting support in this population, and the child and parent characteristics that influence this need. Method We obtained data from parents of 944 children aged 5–12 years with BMID (IQ 50–85) in the Netherlands: 134 (14.2%) of these parents had a need for parenting support. Results The results of multiple regression analyses revealed that parenting stress and child psychosocial problems, adjusted for age and gender of the child, were associated with a need for parenting support. Conclusions One in seven parents with a child with BMID has a need for parenting support. Determinants associated with a need for parenting support are parenting stress and child psychosocial problems. [ABSTRACT FROM AUTHOR]

Background Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. Method We conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes. Results The authors recommend several modifications to accommodate motivational interviewing for use with clients: adapt to language level, adjust to cognitive abilities, and control for social desirability of responding. In addition, certain characteristics of professionals were also found to be critical for effective motivational interviewing: trustworthiness, engagement, acceptance, empathy, and honesty. Conclusions Concrete recommendations for the adaptation of the motivational interviewing techniques for use with people with mild intellectual disability and challenging behaviour are identified. Certain characteristics of professionals are also critical for maximising the treatment motivation of clients. [ABSTRACT FROM AUTHOR]

Background Personal narratives are conditional for victims of sexual abuse to overcome their trauma. Counsellors can help victims with intellectual disability to take an active position in conversations about sexuality and to co-construct a personal narrative. Method Using discourse and conversational analysis, we studied 4 conversations between a counsellor and a woman with autism and mild intellectual disability. Results In conversation with a counsellor the participant was able to express her inner emotions and understanding about sexual issues and other sensitive topics. She was able also to express disagreement and lack of understanding. Conclusion In spite of communication limitations, clients with an intellectual disability can participate actively in conversations with counsellors. Although a helping or encouraging professional approach may also be suggestive and affect the authenticity of the client's narrative, it is the counsellor's duty to prevent distressing effects within the interview. [ABSTRACT FROM AUTHOR]

Background To gain more insight into the antecedent factors of restraint in institutionalised people with intellectual disability (ID), the role played by several demographic and psychological client variables was investigated. Methods The data of 475 people (age range 12-95 years) who were residents in a Dutch institution for people with ID were collected. The severity of restraint was rated on an ordinal scale. Results None of the demographic variables height, weight, age, or length of stay were related to the application of restraint. Significant predictors were the psychological variables: low adaptive functioning, the presence of challenging behaviours, and a relatively high intellectual level. Of the challenging behaviours, specifically behaviours other than actual aggressiveness proved to be predictors of restraint. Conclusions The fact that actual aggressiveness plays a minor role in predicting restraint is a new finding and should be further examined in future research. [ABSTRACT FROM AUTHOR]

Background The Actiwatch is increasingly being used to investigate sleep. The aim of this study was to investigate which sensitivity setting of the Actiwatch is most suitable to detect sleep disturbance in older adults with intellectual disability (ID). Method Two Actiwatch types were compared to polysomnography (PSG) in 10 older adults with mild ID, using a 1-min epoch-to-epoch comparison. Outcome measures were sleep detection percentage, wake detection percentage, and overall accuracy of both Actiwatches, and several sleep parameters. Results The high sensitivity setting of the Actiwatch appeared most suitable to detect sleep disturbance in older adults with ID (wake detection percentage = 54.6%, sleep detection percentage = 89.7%). Sleep parameters calculated using the high sensitivity setting corresponded well to PSG outcomes. Outcomes were similar for both Actiwatches. Conclusions We recommend using the high sensitivity setting of the Actiwatch for clinical evaluation of sleep, and for epidemiological research in older adults with ID. [ABSTRACT FROM AUTHOR]

Background Physical fitness is relevant for wellbeing and health, but knowledge on the feasibility and reliability of instruments to measure physical fitness for older adults with intellectual disability is lacking. Methods Feasibility and test-retest reliability of a physical fitness test battery (Box and Block Test, Response Time Test, walking speed, grip strength, 30-s chair stand, 10-m Incremental Shuttle Walking Test and the Extended Modified Back-Saver Sit-and-Reach Test) were investigated in older adults with ID in a convenience sample of 36 older adults (mean 65.9, range 50-89 years), with differing levels of intellectual disability and mobility. Results and conclusion All tests to measure physical fitness in older adults with ID had moderate to excellent feasibility and had sufficient test-retest reliability (ICCs .63-.96). No statistically significant learning effects were found. [ABSTRACT FROM AUTHOR]

Background: In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. Method: This study involved in-depth interviews with 25 individuals with intellectual disabilities, 24 people without disabilities, and 15 professionals; and observations in neighbourhood projects. Results: Facilitating convivial encounters is a promising way of engaging with difference and an interesting alternative to "othering," "similarising," or "romanticising difference." Conclusions: Convivial encounters do not promote sameness or difference; instead, they allow groups to jointly develop transient shared identifications. In community projects, sameness and difference can be reinvented so that people can engage with difference in an enriching way. Therefore, convivial encounters, especially when organised, can be seen as a new framing of the ideal of social inclusion.

Background: While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method: The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Results: Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving "voice" to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Conclusions: Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships.

Background: Moving out of the family home is a key transition for people with intellectual disabilities and their families. Yet there has been little research about parents' experiences of planning the move of their young adult offspring to residential settings offering 24-hour support. Method: Interviews were conducted with eleven parents whose offspring moved to residential settings within the past 5 years (five fathers; six mothers). They consisted of structured questions about planning their offsprings' moves and semi-structured questions about parents' experiences. Results: Content analysis of the structured questions revealed reasons parents began thinking about the moves and routes to finding information. The thematic analysis highlighted the emotional challenges parents faced. Conclusions: The findings highlight the need to address this neglected topic and ensure that practical and emotional support is put in place to plan positive futures, rather than relying on families to use their own initiative or waiting until a crisis occurs.

Background There is not one case report of successful trauma treatment with the use of an evidence-based treatment method in people with substantially limited verbal capacities. This paper assessed the applicability of eye movement desensitisation and reprocessing (EMDR) in two clients with moderate ID, serious behavioural problems, and histories of negative life events. Method The 8-phase protocol of EMDR, a first-line treatment for psychological trauma, was applied. Results In both cases, posttraumatic stress disorder (PTSD)-like symptoms decreased in a total of only 6 and 5 sessions, respectively. Gains were maintained at 32 and 10 months' follow-up. Conclusions EMDR seems to be an applicable psychological trauma treatment for persons with limited verbal capacities. Considering the importance of these findings, further and more rigorous research is required. [ABSTRACT FROM AUTHOR]