Impact of the emotional development approach on psychotropic medication in adults with intellectual and developmental disabilities: a retrospective clinical analysis.

BACKGROUND: Compared with the general population, adults with an intellectual developmental disorder (IDD) are more likely to develop mental health problems and to receive high levels of psychotropic medication, particularly antipsychotics. The emotional development (ED) approach may help to better understand the nature of challenging behaviour (CB) and tailor treatment and support accordingly. The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment. METHODS: The clinical data of 1758 patients were analysed within a retrospective study design over a period of 12 years. ED level was assessed (1) for the first time (INITIAL-SEO), (2) during a previous hospital stay (PAST-SEO) or (3) not at all (NO-SEO). The effects of the ED assessment and the respective intervention during the current admission on the number of psychotropics and the number and dosage of antipsychotics were analysed for the total sample, including those with CB, autism spectrum disorders and psychosis. Group differences were analysed by a chi-square test and a one-factorial analysis of variance. For analysing the impact of the application of the ED approach on psychotropic medication, a covariance model was applied. Changes between the subsamples were analysed by t-tests for dependent samples. RESULTS: The ED approach had a significant impact on reducing the overall amount of psychotropic medication and the dosage of antipsychotics in all patients with IDD. These effects were mainly attributable to those showing CB. In patients with autism spectrum disorders, the developmental approach reduced the number of antipsychotics. No effects could be observed in patients with psychosis; in this subsample, both the number and dosage of antipsychotics increased. CONCLUSIONS: The application of the ED approach in the current hospital stay reduced the number of psychotropic drugs and the number and dosage of antipsychotics, especially in those patients with IDD and CB, but also in those with autism spectrum disorders.

High vaccination coverage and infection rate result in a robust SARS-CoV-2-specific immunity in the majority of liver cirrhosis and transplant patients: A single-center cross-sectional study.

BACKGROUND: In the third year of the SARS-CoV-2 pandemic, little is known about the vaccine- and infection-induced immune response in liver transplant recipients (LTR) and liver cirrhosis patients (LCP). OBJECTIVE: This cross-sectional study assessed the vaccination coverage, infection rate, and the resulting humoral and cellular SARS-CoV-2-specific immune responses in a cohort of LTR and LCP at the University Medical Center Hamburg-Eppendorf, Germany between March and May 2023. METHODS: Clinical and laboratory data from 244 consecutive patients (160 LTR and 84 LCP) were collected via chart review and a patient survey. Immune responses were determined via standard spike(S)- and nucleocapsid-protein serology and a spike-specific Interferon-gamma release assay (IGRA). RESULTS: On average, LTR and LCP were vaccinated 3.7 and 3.3 times, respectively and 59.4% of patients received ≥4 vaccinations. Altogether, 68.1% (109/160) of LTR and 70.2% (59/84) of LCP experienced a SARS-CoV-2 infection. Most infections occurred during the Omicron wave in 2022 after an average of 3.0 vaccinations. Overall, the hospitalization rate was low (<6%) in both groups. An average of 4.3 antigen contacts by vaccination and/or infection resulted in a seroconversion rate of 98.4%. However, 17.5% (28/160) of LTR and 8.3% (7/84) of LCP demonstrated only low anti-S titers (<1000 AU/ml), and 24.6% (16/65) of LTR and 20.4% (10/59) of LCP had negative or low IGRA responses. Patients with hybrid immunity (vaccination plus infection) elicited significantly higher anti-S titers compared with uninfected patients with the same number of spike antigen contacts. A total of 22.2% of patients refused additional booster vaccinations. CONCLUSION: By spring 2023, high vaccination coverage and infection rate have resulted in a robust, mostly hybrid, humoral and cellular immune response in most LTR and LCP. However, booster vaccinations with vaccines covering new variants seem advisable, especially in patients with low immune responses and risk factors for severe disease.

The positive psychology constructs of parents of children with intellectual and developmental disabilities in Turkey.

BACKGROUND: The purpose of this exploratory study was to examine positive psychology constructs (life orientation/optimism, life satisfaction, happiness, psychological well-being and personal well-being) that may predict the family quality of life (FQOL) of parents of children with intellectual and developmental disabilities (IDD) in Turkey. METHODS: Data were obtained from a convenience sample of 660 parents of children with IDD who responded to six assessments, including a measure of FQOL. An analysis using stepwise multiple regression was conducted to identify predictors of FQOL as rated by parents. RESULTS: The four constructs including personal well-being, psychological well-being, life orientation (optimism) and life satisfaction significantly explained 60% of the total variance of FQOL. The amount of explained variance, beta scores and correlations suggests that these positive psychology constructs are significant predictors of FQOL of parents of children with IDD in Turkey. CONCLUSION: The study findings suggested that positive psychological constructs at the individual level were positively related to FQOL at the group level. Personal well-being was the strongest predictor of FOQL of parents who have children with IDD in Turkey. The results also indicated that other constructs including psychological well-being, an optimistic life orientation and life satisfaction contribute significantly to the FQOL of parents of children with IDD.

Self-determination and future goals in a sample of adults with intellectual disability.

BACKGROUND: In recent years, increased attention has been directed towards the importance of identifying the future goals of people with intellectual disability (ID) and promoting their abilities to design their future. Consistent with these, the first aim of this study is to investigate the future goals of people with ID in terms of content and temporal distance. Moreover, the second aim of this study is to test the predictive role of self-determination on the number of future goals reported by people with ID. METHODS: In this study, 96 young adults with ID were involved and a mixed method design was chosen. Specifically, qualitative procedures (consensual qualitative analyses) and quantitative procedures (structural equation modelling) were carried out. RESULTS: The results showed that the future goals of people with ID are characterised by different factors related to autonomy, health/well-being, interpersonal relations and personal growth. Moreover, self-determination (assessed with Self-Determination Questionnaire-Version for Adults) predicts a higher number of future goals reported by people with ID. CONCLUSIONS: These results suggest the importance of providing adequate support to the development of self-determination.

Comparison of self-determination of students with disabilities: multivariate and discriminant function analyses.

BACKGROUND: Self-determined behaviour is composed of multiple, interrelated component elements, and yet little empirical study has researched the self-determination components other than choice making and goal setting. Also, few theoretical relationships have been drawn between the component elements of self-determined behaviour and the impact of disability category. Therefore, this study examined profiles of the combination of three self-report measures of component elements of self-determined behaviour (autonomous functioning, problem solving and internal locus of control) between two groups (ID and learning disabilities/emotional disorders). METHOD: We analysed data from 96 middle school and high school students ages 13 through 22 years who completed three self-report instruments of the Autonomy - section 1 of The Arc's Self-determination Scale, the Problem Solving Survey and the Nowicki-Strickland Locus of Control Scale. A multivariate analysis of covariance was conducted to investigate the differences between the two groups after controlling for the developmental effects of age. A discriminant function analysis examined whether membership of the two groups could be predicted from the three component elements. RESULTS: Results showed that each group had different profiles within the combined three component elements of self-determination but groups were not different on any single measure of component elements of self-determined behaviour exclusively. The combination of three variables was useful in confirming the membership of two dichotomous groups. CONCLUSIONS: Score differences on the three component behaviour imply that the two groups have different instructional needs and therefore require differentiated instructional approaches. The three measures of the component elements of self-determined behaviour collectively separate the two groups, suggesting that the component elements should be considered in a combination as opposed to being treated as individual elements in the context of discussing self-determined behaviour.

Family members' reports of the technology use of family members with intellectual and developmental disabilities.

BACKGROUND: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. METHOD: Survey responses provided information about use of technology for mobility, hearing and vision, communication, independent living, and in the area of computer use. In addition, survey items queried the use of electronic and information technology devices such as use of email, mobile telephones and digital cameras. RESULTS: Survey results showed that although the use of computers for individuals with intellectual and developmental disabilities is more prevalent, other technology use frequency is much the same as in the late 1990s. However, technology needs did vary among school-age individuals over time. CONCLUSION: Implications of results for technology use of people with disabilities are discussed through the lens of frequency of use and needs for individuals with disabilities.

Evaluation of cognitively accessible software to increase independent access to cellphone technology for people with intellectual disability.

BACKGROUND: There are over two billion telephones in use worldwide. Yet, for millions of Americans with intellectual disabilities (ID), access to the benefits of cellphone technology is limited because of deficits in literacy, numerical comprehension, the proliferation of features and shrinking size of cellphone hardware and user interfaces. Developments in smart phone technology and PDA-based cellphones provide an opportunity to make the social and safety benefits of cellphones more independently accessible to this population. METHOD: This project involved employment of universal design and other specialised software development methods to create a multimedia cellphone interface prototype which was compared with a typical mainstream cellphone in a usability evaluation for individuals with ID. Participants completed a structured set of incoming/outgoing phone tasks using both the experimental and control conditions. Usability measurements included the amount of assistance needed and errors made in completing the cellphone use sequence. RESULTS: A total of 22 individuals with ID participated in the research by engaging in a series of incoming and outgoing cellphone calls using both the multimedia cellphone prototype system and a mainstream Nokia 6360 cellphone. Test subjects required significantly less help (P = 0.001) and made significantly fewer errors (P < 0.001) when completing eight calls using the specialised multimedia phone system as compared with the mainstream phone. CONCLUSIONS: The statistical evidence of both usability results provide promising evidence of the feasibility of implementing universal design and other specialised software development methodologies for increasing independent access to the benefits of cellphone technologies for students and adults with ID. Issues related to designing cognitively accessible interfaces, study limitations and future directions are discussed.

Self-determination, social abilities and the quality of life of people with intellectual disability.

BACKGROUND: The international literature has documented that self-determination is impacted by environmental factors, including living or work settings; and by intraindividual factors, including intelligence level, age, gender, social skills and adaptive behaviour. In addition, self-determination has been correlated with improved quality of life (QoL). This study sought to contribute to the growing literature base in this area by examining the relationship among and between personal characteristics, self-determination, social abilities and the environmental living situations of people with intellectual disabilities (ID). METHODS: The study involved 141 people with ID residing in Italy. Healthcare professionals and social workers who had known participants for at least 1 year completed measures of self-determination, QoL and social skills. Analysis of variance was conducted to verify whether different levels of intellectual impairment were associated with different degrees of the dependent variables. The Pearson product-moment correlation was used to examine any relationships among dependent variables and IQ scores. Finally, discriminant function analysis was used to examine the degree to which IQ score, age, self-determination and social abilities predicted membership in groups that were formed based on living arrangement, and on QoL status (high vs. low). RESULTS: The anova determined, as expected, that participants with more severe ID showed the lowest levels of self-determination, QoL and social abilities. Discriminant function analysis showed that (a) individuals attending day centres were distinguished from those living in institutions in that they were younger and showed greater autonomy of choice and self-determination in their daily activities; (b) basic social skills and IQ score predicted membership in the high or low QoL groups; and (c) the IQ score predicted membership in the high or low self-determination groups. A manova conducted to examine gender- and age-level differences on self-determination found gender differences; women had higher self-determination scores than men. CONCLUSIONS: These findings contribute to an emerging knowledge base pertaining to the role of intraindividual and environmental factors in self-determination and QoL. In general, the study replicated findings pertaining to the relative contribution of intelligence to self-determination and QoL, added information about the potential contribution of social abilities, and pointed to the potentially important role of opportunities to make choices as a particularly important aspect of becoming more self-determined, at least in the context of residential settings.

Altered trophoblast proliferation is insufficient to account for placental dysfunction in Egfr null embryos.

Homozygosity for the Egfr(tm1Mag) null allele in mice leads to genetic background dependent placental abnormalities and embryonic lethality. Molecular mechanisms or genetic modifiers that differentiate strains with surviving versus non-surviving Egfr nullizygous embryos have yet to be identified. Egfr transcripts in wildtype placenta were quantified by ribonuclease protection assay (RPA) and the lowest level of Egfr mRNA expression was found to coincide with Egfr(tm1Mag) homozygous lethality. Immunohistochemical analysis of ERBB family receptors, ERBB2, ERBB3, and ERBB4, showed similar expression between Egfr wildtype and null placentas indicating that Egfr null trophoblast do not up-regulate these receptors to compensate for EGFR deficiency. Significantly fewer numbers of bromodeoxyuridine (BrdU) positive trophoblast were observed in Egfr nullizygous placentas and Cdc25a and Myc, genes associated with proliferation, were significantly down-regulated in null placentas. However, strains with both mild and severe placental phenotypes exhibit reduced proliferation suggesting that this defect alone does not account for strain-specific embryonic lethality. Consistent with this hypothesis, intercrosses generating mice null for cell cycle checkpoint genes (Trp53, Rb1, Cdkn1a, Cdkn1b or Cdkn2c) in combination with Egfr deficiency did not increase survival of Egfr nullizygous embryos. Since complete development of the spongiotrophoblast compartment is not required for survival of Egfr nullizygous embryos, reduction of this layer that is commonly observed in Egfr nullizygous placentas likely accounts for the decrease in proliferation.

The relationship between quality of life and self-determination: an international study.

BACKGROUND: The aim of this study was to evaluate the relationship between self-determination and quality of life (QOL) of persons with intellectual disabilities (ID) living in four countries (Canada, United States, Belgium and France). METHOD: Participants were 182 adults with mild ID living in community settings (with families, living independently or in supported living environments). QOL was measured with the Quality of Life Questionnaire. Self-determination was measured using the Adult version of The Arc's Self-Determination Scale. Discriminant function and correlational analyses were conducted. RESULTS: Discriminant function analysis indicated that essential characteristics of self-determination predicted membership in the high QOL group and that overall self-determination and QOL were significantly correlated, as were sub-scale scores. CONCLUSIONS: The study replicates findings from a previous study with an international sample and confirms the importance of self-determination to enhance QOL. Subsequent research should examine the direction of the relationship between self-determination and QOL and examine the relationship of essential characteristics of self-determined behaviour and core domains of QOL in greater detail.

Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments.

In recent years, the self-determination construct has received increased international visibility and utilization in the field of intellectual disability (ID). This has resulted in efforts to promote skills enhancing self-determination, and in efforts to change how adult services are funded to allocate resources to increase consumer control and direction. An important component to consider in both of these efforts is the role of the environment on self-determination. The present study examined the self-determination, autonomy and life choices of individuals with ID before and after they moved from a more restrictive work or living environment. The self-determination of adults with ID was measured for an average 6-months before and after a move from a more restrictive living or working environment to a community-based setting. Paired-sample t-tests indicated that there were significant changes, in each case in a more adaptive direction, in self-determination, autonomous functioning and life choices following a move to a less restrictive environment. The present findings contribute to emerging evidence that the self-determination of individuals with ID is limited by congregate living or work settings which limit opportunities for choice and decision-making. Alternatively, more normalized, community-based environments support and enhance self-determination. Because self-determination has been linked to positive adult outcomes and enhanced quality of life, it is important to consider ways to enable people with ID to live and work in their communities.

Teaching students to self-regulate their behavior: the differential effects of student-vs. teacher-delivered reinforcement.

The effects of selected student-directed learning strategies on the classroom behavior of six students with varying disabilities in general education were examined using a multiple baseline design across groups. Target behaviors included academic, study, and social skills. Results indicated increases in student target performance for all participants, however, differential effects were observed across groups and reinforcement conditions (student-vs. teacher-delivered). Additionally, anecdotal reports obtained from the cooperating teacher and students supported the study's findings. The implications of these findings are discussed.

Self-determination across living and working environments: a matched-samples study of adults with mental retardation.

The environments in which people live, learn, work, and play influence many aspects of their lives, including their self-determination. These environments differ in the degree to which they enable people to receive personally designed and individualized supports. In the present study self-determination, autonomy, life choices, and lifestyle satisfaction for adults with mental retardation matched by level of intelligence, age, and gender but differing in type of residence or working environment were examined. Analyses indicated that respondent self-determination, autonomy, and satisfaction as well as opportunities for choice-making differed according to settings.

Students' expectations of the future: hopelessness as a barrier to self-determination.

The development of self-determination depends on the emergence of positive beliefs about oneself and one's future. Research has suggested that these positive perceptions are the outcome of a process of learning and using problem-solving skills and the achievement of perceived or actual control, referred to as learned hopefulness. Expectations for the future (e.g., hopefulness/hopelessness) of students with mental retardation, learning disabilities, or students without disabilities were examined. Students with mental retardation were significantly less hopeful than were their peers with learning disabilities or without disabilities. Implications from these findings for the development of self-determination were discussed.

National survey of the use of assistive technology by adults with mental retardation.

Although assistive technology provides a promising means to accommodate for barriers to independence and self-determination for people with mental retardation, such devices are underutilized by this population. The Arc conducted a national survey of the use of assistive technology by people with mental retardation. In four of five areas, the percentage of individuals who used a device was under 10%. In two of these areas, the percentage of individuals who might benefit from a device exceeded the percentage who used a device, and in a third area, the percentage using devices was nearly equal to those who did not use but might benefit from a device. Availability and cost were reported as primary barriers. Suggestions were made to address these issues.

Perceptions of control of students with and without cognitive disabilities.

Research in the educational and psychological literature has linked adaptive perceptions of control to positive adult outcomes like better employment, higher quality of life, and increased independence. In recent years these findings have been extended to people with mental retardation. Research with this population has suggested that they tend to be more externally oriented than peers without disabilities or peers with other types of disabilities. This research, however, has not provided direct comparisons between people with mental retardation and other populations. The present study compared the perceptions of control of 431 students (227 boys, 204 girls) ages 10-20 years (M = 14.3) with mental retardation (n = 94), learning disabilities (n = 159), or no disabilities (n = 178). Analysis confirmed that students with mental retardation scored significantly more externally on measures of locus of control and attributions of academic success and failure than their peers with learning disabilities or without disabilities. The discussion focuses on implications for these students.

Essential characteristics of self-determined behavior of individuals with mental retardation.

Despite increased emphasis on self-determination for individuals with mental retardation, only a few theoretical models have been formulated that specify measurable characteristics for the promotion and evaluation of this outcome. We propose that self-determination refers to acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life free from undue external influence or interference. Self-determined behavior is autonomous, self-regulated, based on psychological empowerment, and self-realizing. We evaluated this definition by asking participants with mental retardation to complete various instruments that measured self-determined behavior and these essential characteristics. Discriminant function analysis indicated that measures of essential characteristics predicted differences between groups based on exhibition of self-determined behavior.

Intra-individual factors influencing efficacy of interventions for stereotyped behaviours: a meta-analysis.

The efficacy of treatments targeting stereotyped behaviours has been the focal point of several reviews. This study examined efficacy as a function of intra-individual characteristics, including age, gender, level of disability and topography of the behaviour. A meta-analysis of studies reporting treatments of stereotyped behaviours appearing in 23 journals over 20 years was conducted. Efficacy was determined using two metrics, Percentage Non-overlapping Data and Percentage Zero Data, which indicate treatment success as a function of the degree to which the behaviour fell below baseline levels, and once reaching zero, remained there. Non-parametric analyses indicated differences in treatment efficacy according to age and the form of the stereotypy. Implications for the design of treatments to address stereotypies are discussed.

How self-determined are people with mental retardation? The National Consumer Survey.

Although there is a growing acknowledgement that individuals with disabilities have the right to individual self-determination, people with mental retardation have been among the last for whom these issues have been addressed, despite calls to do so over the last 20 years. In this article, we examined the importance of self-determination for all people and reported the outcomes of a national survey that provides evidence regarding the self-determination of Americans with mental retardation.

Reliability and acquiescence in the measurement of locus of control with adolescents and adults with mental retardation.

The locus of control construct has been useful for explaining individual and group variability in motivation, personality, and achievement. Despite a general agreement that people with mental retardation generally lack control in their lives, the construct has not been used to any meaningful extent to explain less than optimal life outcomes experienced by this group. One reason that this circumstance exists is that people with mental retardation often answer questions in an acquiescent manner, thereby jeopardizing the reliability and validity of the measure. The present study examined the reliability of one measure of locus of control, the Adult version of the Nowicki-Strickland Internal-External Scale, for 491 adults and adolescents with mental retardation and, using alternative forms of this scale, assessed the extent to which acquiescence contributes to externality in this population. Results from repeated-measures analysis of variance suggest that the acquiescence contributes nominally to measurement error with this population. Suggestions are made to improve reliability with the scale.