Severe Multiple Disabilities Research Articles

School staff perspectives on using augmentative and alternative communication with students with severe or profound intellectual and multiple disabilities

AbstractThis mixed methods survey study aims to investigate school staff's perspectives on using augmentative and alternative communication (AAC) with students with the most severe disabilities in Swedish school settings. The study employed a convergent mixed methods design, where both quantitative and qualitative data were collected and analysed in parallel and then integrated and compared in the discussion and conclusion section of the paper. The study's respondents consisted of school staff who worked with students with severe or profound intellectual and multiple disabilities (S/PIMD) in Swedish schools. Results showed that almost all staff reported using AAC with students at least half of the time. The frequency of AAC use did not seem to differ between staff with different educational backgrounds, apart from teachers/special educators appearing slightly more inclined to use AAC in planned classroom activities when compared to staff with other educational backgrounds. The results also corroborate previous research stating that collaboration between stakeholders (such as school, family and the habilitation services) is fundamental to successful AAC implementation but that there are challenges when establishing efficient collaborations between stakeholders.

What Approaches Described in Research Literature Enhance the Engagement of Children and Young People With Severe or Profound and Multiple Learning Disabilities? A Systematic Literature Review

ABSTRACTBackgroundChildren and young people (CYP) with severe or profound and multiple learning disabilities are more likely to experience difficulties engaging for long periods. Finding ways to facilitate their engagement is crucial in promoting their social and emotional development and their mental well‐being, particularly as they are more vulnerable to difficulties with mental well‐being compared to their peers.MethodsWe undertook a systematic literature review (SLR) to identify approaches described within peer‐reviewed research literature that enhance the engagement of these children. Data from seven relevant studies were qualitatively synthesised. Thematic networks were then developed to visually present global, organising and basic themes identified within data.FindingsA global theme derived from organising themes across studies indicated that the quality of space is an important consideration in enhancing engagement. This included the extent to which space adhered to prescribed knowledge or afforded practitioners with opportunities to follow their intuition and deviate from such ideas.ConclusionsQuality of space may be important to the engagement of these CYP and consequently to their mental well‐being. This may involve consideration of the extent to which formal learning environments for them are organised and informed by dominant theory and discourse (abstract space), prescribed (spatial) practice and the extent to which environments provide conditions for ‘lived spaces’ that are potentially more facilitative of their engagement and so their mental well‐being.

Критерии оценки качества жизни в проектах поддержки подростков и молодых взрослых с ментальными особенностями и тяжелыми множественными нарушениями развития

<p>Criteria for assessing the quality of life of adolescents and young adults with mental disabilities and severe multiple developmental disabilities should take into account their needs, limitations and individual characteristics. This article describes the experience of evaluating the effectiveness of support programs through the analysis of changes in indicators of spatial and temporal orientation, social, communicative, craft skills and emotional-volitional sphere, based on systematic supervision of specialists and keeping a development diary. It is shown that such an approach to assessing the well-being of wards allows you to identify support targets in time and thereby contribute to the development of their independence skills and successful socialization.</p>

A Comparative Study of the Views of Pedagogical Specialists on the Organization and Process of Education of Students with Severe and Profound Multiple Disabilities in Bulgaria and Belgium (Flanders)

A Comparative Study of the Views of Pedagogical Specialists on the Organization and Process of Education of Students with Severe and Profound Multiple Disabilities in Bulgaria and Belgium (Flanders)

Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study.

This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints. Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6). The 285 statements were categorised into 5-7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties. Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

Interrelations of Intelligence and Social-Adaptive Skills in Adolescents with Multiple Developmental Disorders: A Pilot Study

IntroductionThe relationship between social adaptation and intelligence in adolescents with developmental disorders varies depending on various psycho-social factors. Adolescence is marked by pubertal changes in mental and physical development. Previous research has revealed a moderate correlation between intelligence and various groups of adaptive skills in adolescents with Down syndrome. However, studies involving adolescents with multiple developmental disorders are relatively scarce in the existing literatureObjectivesDetermine the distribution of intelligence among adolescents with severe multiple disabilities; Identify the connection between intelligence and the level of adaptation in this group; explore the connection between intelligence and independence skills in the subjects.MethodsThe study included 11 adolescent participants enrolled in a comprehensive social skills development intervention program at the Center for Curative Pedagogics: 5 girls and 6 boys, mean age - 14,0 yrs. Age st.dev: 24,3 and 18.4. ICD-10 DS of participants were: F48.xx, F70.xx, F80.xx, F84.xx, G40.xx, G80.xx, Q74.xx, and Q90.xx.Following tools were used: Leiter-3 scales (LIQ), Vineland-3 Adaptive Behavior Scales (VSS); Perkins I.C.A.N. independence Scales (ICAN).ResultsSelected variables including were tested with the Shapiro-Wilk test. p-values of the SW test indicated that data were not distributed normally: LIQ (w=0.953, p=0.685); VSS (w=0.964, 0.821); ICAN (w=0.877;p=0.095).For the identification of the connections between the intelligence (LIQ) and adaptive functioning (VSS) we used r-Spearman criteria. These parameters showed significant monotonic relationship (rs = 0.961, p<0.001). Mean IQ level of the sample is characterized as mildly impaired (mean = 62.9). The adaptive and the independence skills level of the sample are also far below the low normative results (57.1 and 48.7 respectively). Images 1,2 and 3 shows the distribution of the data. The correlation between IQ (LIQ) and independence skills (ICAN) is not significant (rs = 0.671, p<0.024), as well as the correlation between adaptive and independence skills (rs = 0.733, p<0.010).ConclusionsWe made an exploratory study of the adolescent participants of the comprehensive social skills development intervention program at the Center for Curative Pedagogics. Results show that non-verbal intelligence of the participants shows strong connection to the adaptive skills, but not to the independence skills. Sample size is very small, which is explained by the specifics of the intervention. Further research should be focused on the increasing sample and the expanding analysis parameters, such as social and family history, intervention details and the additional variables of the existing measurements.Disclosure of InterestNone Declared

Parent-perceived autonomy-supportive experiences and basic psychological needs of people with complex support needs: Development and preliminary psychometric evaluation of two questionnaires.

Background: Understanding and supporting basic psychological needs of persons with complex support needs is important but difficult because of communicative challenges . We developed and tested questionnaires to obtain parents' perspectives on autonomy support and basic psychological needs of autonomy, competence, and relatedness. Method: Two parent-informant questionnaires were developed, administered, and subjected to psychometric property analyses. Participants were 63 Dutch parents of persons diagnosed with severe or profound intellectual and multiple disabilities. Results: Principal component analyses revealed a one-factor structure for the Parental Perceptions on Autonomy-Supportive Experiences questionnaire, while the Parental Perceptions on Basic Psychological Need Signals questionnaire yielded two-factors interpreted as Noticing Signals of Autonomy and Noticing Signals of Competence/Relatedness. Evidence for construct validity was found for both instruments. Conclusions: Preliminary evaluation of the new questionnaires is encouraging, but further validation with a larger sample size is warranted.

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015–2016 and wave 2 (T2) in 2020–2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.

Sensory approaches for adults with severe or profound and multiple learning disabilities: A systematic literature review

Introduction: Sensory approaches are often used by Occupational Therapists working with clients with a severe or profound and multiple learning disabilities (SLD/PMLD). The aims of this review were to synthesise the outcomes of sensory approaches for adults with an SLD/PMLD and describe the key intervention components. Method: A mixed methods literature review of three databases was completed to identify studies where sensory approaches were used for clients with an SLD/PMLD. Peer-reviewed research articles published between January 1990 and April 2021 were included. Data quality was assessed using the Mixed Methods Appraisal Tool. A convergent-segregated approach to synthesis was taken, including thematic analysis of qualitative data and a narrative review of quantitative data. Results: Eighteen studies were included. Positive outcomes were reductions in challenging behaviour, stress and improved engagement, attention and communication. Three themes emerged, suggesting important components of sensory approaches for clients with an SLD/PMLD: matching sensory stimuli to the needs of the individual, sensory integration therapists and caregivers as facilitators and increased intervention duration and frequency. Conclusion: Evidence suggests that sensory approaches support positive social, emotional and cognitive outcomes for individuals with an SLD/PMLD. Essential features of sensory approaches for this client group are sensitive use of sensory stimuli, skilled facilitators and more intensive intervention protocols.

Priority Support Areas and Learning Domains for Students with Severe and Profound Multiple Disabilities According to the Views of Pedagogical Specialists in Bulgaria And Flanders (Belgium)

The article presents the views of pedagogical specialists supporting students with severe and profound multiple disabilities in the Bulgarian and Flemish education systems about the priorities in education and support of the target group of children and youth. The analysis of the results obtained from the empirical research provides valuable information about the direction in which the greatest efforts are directed in the process of inclusive education in Bulgaria and Belgium, brings out some differences in the prioritization of support and training in the two groups of respondents and opens opportunities for discussion in a comparative plan and taking into account the point of view of the specialists as a key factor for the implementation of an effective process of support and education for students with severe and profound multiple disabilities.

A Comparative Study of the Difficulties of the Pedagogical Specialists in the Process of Education of Children with Severe and Profound Multiple Disabilities in Bulgaria and Flanders (Belgium)

The article presents the results of a comparative study of the difficulties that pedagogical specialists in Bulgaria and Flanders (Belgium) encounter in the process of education of children and students with severe and profound multiple disabilities. The analysis of the results shows that regardless of the differences in the two educational systems, specialists in both groups face many difficulties, caused both by the peculiarities of the development of the targeted group of children and students, the specifics of communication, behavior and learning processes, but also by some organizational aspects of the implemented support and education. The data from the empirical study can serve as a hypothetical direction to determine the professionals’ needs of additional qualifications and the relevant areas in which they should be supported, as well as a starting point for improving the necessary conditions to ensure effective education for the target group of students.

Factors Influencing Attachment Formation in Homebound Children With Severe Multiple Disabilities and Their Families: A Trajectory Equifinality Approach Analysis

Factors Influencing Attachment Formation in Homebound Children With Severe Multiple Disabilities and Their Families: A Trajectory Equifinality Approach Analysis

Chairside oral prophylaxis for people with profound intellectual or multiple disabilities—a retrospective feasibility study

ObjectivesPeople with severe intellectual or multiple disabilities (PIMD) have been receiving dental care in a specialized unit offering special care dentistry. For most of these adult patients, the initial consultation is complaint driven. In addition, the limited ability to cooperate due to their disabilities often means that dental treatment for these patients is usually carried out under general anesthesia (GA). Chairside treatment attempts are the exception rather than the rule. This retrospective study evaluated whether consistent practice of behavioral management principles and techniques embedded in a specific dental environment enables successful dental treatment of PIMD.Materials and methodsThe feasibility of chairside dental prophylaxis in PIMD (n=36) was analyzed: specific behavioral management techniques were applied, and professional tooth cleaning (PTC) was performed in the dental chair. Clinical data obtained from medical records and a questionnaire were analyzed.ResultsAll patients had severe intellectual or multiple disabilities and had previously undergone at least one dental treatment under GA. Of these patients, 55.6% never had their teeth professionally cleaned before. Applying different behavioral techniques, all patients were compliant with receiving PTC in the dental chair.ConclusionsAn individualized and disability-specific treatment strategy using various noninvasive and nonpharmacological behavioral guidance techniques resulted in a higher compliance rate in PIMD, which allowed chairside PTC and reduced the need for treatment under GA.Clinical relevanceConsistent implementation of various behavioral guidance techniques and communication strategies in a supportive environment enabled all patients to receive chairside PTC and be involved in a lifelong recall program.

Practitioner–researchers’ views of disability education project for children with severe multiple disabilities: A first-person group study using collaborative autoethnography

Children with severe multiple disabilities face numerous possibilities for enjoying music and participating in performance activities; however, the research practice for realizing these possibilities involves various difficulties. To understand the disabilities of children and their engagement with music, awareness of one’s perception of disability is necessary for each practitioner–researcher. The researchers of the current study reflected on their personal views about disability and life histories and described and analyzed them through collaborative autoethnography (CAE). The study was conducted through the practice of combining electronic music equipment and traditional instruments as a music education project for children with severe multiple disabilities. The results demonstrated that the perceptions of the researchers about disability and their life histories interacted with and transformed their research practice. Additionally, the study highlighted how endeavors in CAE encouraged dialogue among researchers and deepened mutual understanding. The suggestions for researchers of music education practice with children with disabilities include analysis of disability from the first-person perspective and sharing of views among co-researchers.

Basic research on voice training game application for children with severe multiple disabilities: By the phasic heart rate responses

Basic research on voice training game application for children with severe multiple disabilities: By the phasic heart rate responses

Towards criteria and symptoms of constipation in people with severe or profound intellectual and multiple disabilities: A Delphi study

BackgroundChronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. AimThis Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them. MethodsA two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively. ResultsIn the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation’ and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain ‘Behavioural/Emotional’ were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain ‘Defecation’ n = 5; domain ‘Physical features n = 3). Within the domain ‘Behavioural/Emotional’, consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered ‘generic’ and <70% as ‘personal’. Symptoms mentioned in the text boxes were used to operationalize categories. Discussion and conclusionIt was possible to compile a list of generic criteria related to the domains ‘Defecation’ (n = 5) and ‘Physical features’ (n = 3) supplemented with generic symptoms related to the domain ‘Behavioural/Emotional’ (n = 5). We propose using both generic as well as personal criteria and symptoms resulting in a personal profile for an individual with SPIMD. Based on the current results, we recommend follow-up research to develop a screening tool to be used by relatives and professional caregivers, and a definition of constipation. This may support reciprocal collaboration and lead to timely identification of constipation in people with SPIMD.

Prevalence of children under five with disabilities in Sierra Leone in 2017: Insights from a population-based multiple indicator cluster survey

BackgroundChildren with disabilities have been low on the agenda of child health, including in Sierra Leone, and there are still many gaps in our knowledge and understanding of the issue. ObjectiveTo estimate the prevalence of children with disabilities in Sierra Leone using functional difficulty as a proxy and to understand the factors associated with disabilities among children two to four years living in Sierra Leone. MethodsWe used cross-sectional data from the Sierra Leone 2017 Multiple Indicator Cluster Survey. Disability was defined using a functional difficulty definition with additional thresholds used to define children with severe functional difficulty and multiple disabilities. Logistic regression models estimated odds ratios (ORs) of childhood disability and how they were associated with socioeconomic factors and living conditions. ResultsPrevalence of children with disabilities was 6.6% (95% confidence interval (CI) 5.8–7.6%) and there was a high risk of comorbidity between different functional difficulties. Children with disabilities were less likely to be girls (adjusted odds ratio (AOR) 0.8 (CI 0.7–1.0) and older (AOR 0.3 (CI 0.2–0.4)), but more prone to be stunted (AOR 1.4 (CI 1.1–1.7)) and have younger caregivers (AOR 1.3 (CI 0.7–2.3)). ConclusionThe prevalence of disabilities in young Sierra Leonean children was comparable to other countries in West and Central Africa when using the same measure of disability. Preventive as well as early detection and intervention efforts are recommended to be integrated with other programs, e.g vaccinations, nutrition, and poverty reducing programs.

Music therapy with individuals with severe multiple disabilities

The present study uses a qualitative approach to explore music therapy with individuals with severe multiple disabilities (SMD). Six music therapists with wide experience in this field took part in a focus group discussion that featured questions about the potential of music therapy with children, adolescents and adults with SMD, the ways individuals with SMD use music therapy, the interrelation of functional and psychotherapeutic aspects in music therapy, and the challenges in conducting research studies including individuals with SMD. The data were analysed using a grounded theory approach, and the findings highlighted the following macro areas: opportunities, music therapy approaches, and research challenges. Participants emphasised the wide range of developmental opportunities that music therapy can offer to individuals with SMD. They outlined the unique characteristics music therapy interventions offer for working with individuals with SMD, especially when combining functional and psychotherapeutic approaches. The broad spectrum of competencies and qualities of the music therapist was also highlighted. The experiences and insights of the international group of music therapy experts about their practical work with individuals with SMD are promising and open up many possibilities for further development of this field of work in research, teaching and therapeutic practice.

Machine learning-based classification of the movements of children with profound or severe intellectual or multiple disabilities using environment data features.

Communication interventions have broadened from dialogical meaning-making, assessment approaches, to remote-controlled interactive objects. Yet, interpretation of the mostly pre-or protosymbolic, distinctive, and idiosyncratic movements of children with intellectual disabilities (IDs) or profound intellectual and multiple disabilities (PIMD) using computer-based assistive technology (AT), machine learning (ML), and environment data (ED: location, weather indices and time) remain insufficiently unexplored. We introduce a novel behavior inference computer-based communication-aid AT system structured on machine learning (ML) framework to interpret the movements of children with PIMD/IDs using ED. To establish a stable system, our study aimed to train, cross-validate (10-fold), test and compare the classification accuracy performance of ML classifiers (eXtreme gradient boosting [XGB], support vector machine [SVM], random forest [RF], and neural network [NN]) on classifying the 676 movements to 2, 3, or 7 behavior outcome classes using our proposed dataset recalibration (adding ED to movement datasets) with or without Boruta feature selection (53 child characteristics and movements, and ED-related features). Natural-child-caregiver-dyadic interactions observed in 105 single-dyad video-recorded (30-hour) sessions targeted caregiver-interpreted facial, body, and limb movements of 20 8-to 16-year-old children with PIMD/IDs and simultaneously app-and-sensor-collected ED. Classification accuracy variances and the influences of and the interaction among recalibrated dataset, feature selection, classifiers, and classes on the pooled classification accuracy rates were evaluated using three-way ANOVA. Results revealed that Boruta and NN-trained dataset in class 2 and the non-Boruta SVM-trained dataset in class 3 had >76% accuracy rates. Statistically significant effects indicating high classification rates (>60%) were found among movement datasets: with ED, non-Boruta, class 3, SVM, RF, and NN. Similar trends (>69%) were found in class 2, NN, Boruta-trained movement dataset with ED, and SVM and RF, and non-Boruta-trained movement dataset with ED in class 3. These results support our hypotheses that adding environment data to movement datasets, selecting important features using Boruta, using NN, SVM and RF classifiers, and classifying movements to 2 and 3 behavior outcomes can provide >73.3% accuracy rates, a promising performance for a stable ML-based behavior inference communication-aid AT system for children with PIMD/IDs.

Satisfying Basic Psychological Needs among People with Complex Support Needs: A Self-Determination Theory-Guided Analysis of Primary Relatives’ Perspectives

Background: The fulfilment of basic psychological needs (BPNs) is seen as an integral part of human self-determination, subjective wellbeing, and overall quality of life. However, the meaning of these psychological constructs for individuals with the most extensive support needs remains elusive. Methods: Primary relatives of nine people diagnosed with severe or profound intellectual and multiple disabilities were interviewed about their perceptions of autonomy, competence, and relatedness regarding their family member with complex care needs, and about the ways in which they tried to support their family member in fulfilling specific BPNs. The interview analysis followed a grounded theory with the sensitizing concepts approach. Results: The relatives assigned important meaning to the BPNs, providing insights into their subtle nature, their implicit drivers, and how they were experienced. The relatives also identified serious challenges in detecting, clarifying, and creating opportunities for BPNs. Conclusions: The themes in the relatives’ perspectives can be summarized into a conceptual framework that may contribute to better mutual understanding between people with complex care needs, their relatives, and healthcare providers.