Multiple Disabilities Research Articles

Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study.

Motivation for the study. Filling a knowledge gap regarding support groups for caregivers of children with multiple disabilities. Main findings. Support groups are valuable spaces for social support and learning for caregivers of children with multiple disabilities. They facilitate resilience and coping strategies following the birth of a child with multiple disabilities. They promote the participation and empowerment of caregivers of children with multiple disabilities to address access barriers and advocate for the fundamental rights of children. Implications. It is important to promote and support support groups for caregivers of children with multiple disabilities. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark's proposals. The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.

Personal Guidance Service to Enhance The Independence of Children with Multiple Disabilities with Visual Impairment

This study aims to identify, analyze and interpret the process of providing personal guidance services carried out by classroom teachers to children with MDVI barriers at SLB A Bartemeus Manado. This research uses case study qualitative research methods. The subject in this study amounted to one person, and the sampling in this study was purposive sampling. The methods used in collecting this data are observation, interview, and documentation. The results showed that the subject experienced very significant changes after receiving personal guidance services, such as HP being able to walk alone, mastering Mobility Orientation in the orphanage and school environment, being able to cook, iron, wash clothes, wash dishes, be more confident and independent so that he does not feel afraid in carrying out his daily activities.

Teaming to Design Tangible Symbol Communication Systems for Children With Multiple Disabilities

Teaming to Design Tangible Symbol Communication Systems for Children With Multiple Disabilities

Perceived discrimination among caregivers of children with disabilities in China: Unraveling the effects of social determinants

PurposeAlthough discrimination has gained increasing attention in research and practice intervention for family caregivers of children with disabilities, little is known about the social determinants that associate with the perceived discrimination among caregivers, especially in non-Western contexts. This study aims to examine the socio-familial and child-level determinants of perceived discrimination among family caregivers of children with disabilities in China. MethodThis study drew from a population-based cross-sectional survey in Shenzhen, China. Proportional quota sampling was conducted to get data from 2500 family caregivers of children with disabilities in rehabilitation service centers (response rate = 94.9%, n = 2373), accounting for 25% of the total population of children with disabilities receiving service in Shenzhen. Latent profile analysis was conducted to categorize three perceived discrimination groups among caregivers (i.e., severe perceived discrimination group, moderate perceived discrimination group, and low perceived discrimination group). The multinomial logistic regression models were conducted to test the association between these social determinants and perceived discrimination. ResultsMost caregivers (82.9%) reported moderate or severe levels of perceived discrimination. Caregivers of children with moderate and severe impairments and children with mental and multiple disabilities were more vulnerable to perceiving severe social discrimination. Socio-familial characteristics, particularly the intersectionality between gender and employment, influence caregivers’ perceived discrimination. ConclusionCaregivers of children with disabilities experience pervasive social discrimination in contemporary urban China. Our study demonstrates that the social construction of disablism and the affiliate discrimination against family caregivers of children with disabilities is complex and multidimensional and depends upon the children's disability and the caregivers' socio-demographic characteristics.

Limits on quality of life: Who has the answer?

AbstractTaking care of persons with intellectual and multiple disabilities (IMD), especially when vulnerability and medical intervention increase, can lead to the question: to what extent is there still quality of life? In the search for answers, caretakers and families are confronted with unsolvable dilemmas such as how can we identify the meaning of this life or recognise when there is suffering? How does one understand and give meaning to quality of life where fragility is present? Society, on the other hand, which rates successful living as the standard, avoids the discussion on limits to quality of life by labelling it as a medical ethical issue. It has recently been argued that the medical perspective is leading in this discussion and is the deciding factor in giving meaning to quality of life. Such statements worry IMD healthcare professionals and caregivers. This article therefore aims to offer an insight into the professional, practical and personal care experience of both authors, to explore the issue in more depth and start a nuanced dialogue without losing sight of the immense complexity of the subject. To do this, we first outline the social context in which the healthcare practice has to take place, explaining the reality of it and the difficulties faced.

Self-reported suicidal behaviour among people living with disabilities: prevalence and associated factors from a cross-sectional nation-wide survey in Bangladesh

BackgroundDisability marginalises a large portion of Bangladesh’s population. Global pre- and post-pandemic research evidently states that, this group is more prone to develop mental health problems, which increases the risk of self-harm and suicide among them. It is crucial to comprehend and mitigate the mental health challenges among the people with disabilities which in turn can promote their greater participation in community, and in national socioeconomic development. However, currently there is limited information available, regarding the suicidal behaviour of this group in Bangladesh. Therefore, this study aimed to investigate the prevalence and contributing factors of suicidal behaviour among people with disabilities.MethodA cross-sectional survey was conducted during September and October 2022, among the participants who had selected disabilities, by using probability proportional to size sampling technique across all eight divisions of Bangladesh. A semi-structured questionnaire comprising information about sociodemographic, lifestyle, health; and Suicidal Behaviour Questionnaire-Revision (SBQ-R) was used. The association between the determinants and mental health outcome was investigated using the Chi-square test, and the contributing factors were investigated using the multiple binary logistic regression.ResultAbout 10.45% of the participants reported to have suicidal behaviour (e.g., suicidal ideation, attempts, completed suicide), considering the cut-off score as 7 for the SBQ-R in the study period. Approximately, 40% respondents mentioned suicidal ideation in their lifetime, whereas, 9.01% had suicidal ideation over the past 12 months. Additionally, 8.87% of the person with disabilities, mentioned about their suicidal intent to the family members, and 5.94% reported the likelihood of suicide in the future. Being female, having multiple disabilities, and not being connected with family and friends were found to be significantly associated with suicidal behaviour.ConclusionThis research demonstrates the significance of treating mental health issues and expanding accessibility to pre-existing services to lessen the impact of the limitations generated by disabilities. Policymakers can utilize this baseline findings to design large scale research and develop measures for suicide prevention, and management for at-risk groups.

Mortality in French people with polyhandicap/profound intellectual and multiple disabilities.

In recent decades, progress has been made in the care of people with polyhandicap/profound intellectual and multiple disabilities (PIMD) through a better understanding of the pathophysiology and the development of new care management and rehabilitation strategies adapted to these extreme pathologies. Although there is a lack of knowledge about the health status and care management of the oldest people, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow the optimisation of preventive and curative care management strategies. Few robust data on mortality and life expectancy have been documented for this population in France. Our aims are to estimate the median survival time and assess the factors associated with mortality in people with polyhandicap/PIMD receiving care in France. This study included people with polyhandicap/PIMD, followed by the French national cohort 'Eval-PLH' since 2015. These individuals were included in specialised rehabilitation centres and residential institutions. The people included in the first wave of the cohort (2015-2016) were eligible for the present study. Vital status on 1 January 2022 (censoring date) was collected in two ways: (1) spontaneous reporting by the participating centre to the coordinating team and (2) systematic checking on the French national death platform. According to the vital status, survival was calculated in years from the date of birth to the date of death or from the date of birth to the censoring date. The factors associated with mortality were evaluated using the Cox proportional regression hazards model. Data from 780 individuals aged between 3 and 67years were analysed. At the censoring date, 176 (22.6%) had died, and the mean survival was 52.8years (95% confidence interval: 51.1-54.5). Mortality was significantly associated with a progressive aetiology, recurrent pulmonary infections, drug-resistant epilepsy and a higher number of medical devices. This study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France.

Parent Opinions Regarding The Services Received In Special Education And Rehabilitation Centers For Individuals With Multiple Disabilities

Individuals with multiple disabilities (MD) could receive services from different institutions throughout their lives. One of these institutions is Special Education and Rehabilitation Centers. Special Education and Rehabilitation Centers provide various services to individuals with MD. The quality of these services affects the quality of life of both the children with MD and their parents. Therefore, this study aims to determine the views of parents on the services received by the individuals with MD from Special Education and Rehabilitation Centers. Eleven female and two male parents participated in this study. The study was designed with the phenomenology pattern, one of the qualitative research methods, and data were collected with the semi-structured interview technique. The interviews lasted between 12 and 18 minutes. The data obtained from the interviews was analyzed with the descriptive analysis technique. The findings showed that parents receive various support services from Special Education and Rehabilitation Centers for both themselves and the individuals with MD, they were very content with the education and physiotherapy services provided by the institutions, and these services were very effective and beneficial for their children and themselves. In addition, it was concluded that the duration of the education services provided was too short and insufficient for their children that the state should support such institutions and that they wanted their children to be hired in a job within their competence.

Examining the association between perceived stigma, its correlates, and restrictions in participation among persons with disabilities in Nepal: a cross-sectional study

BackgroundDisability stigma in low- and middle-income countries is one of the most persistent and complex barriers limiting persons with disabilities (PwDs) from enjoying their rights and opportunities. Perceived stigma among PwDs and its impact on participation restriction is rarely assessed in Nepal.ObjectiveThis study aimed to measure the extent of perceived stigma by PwDs, identify its relationships with specific demographic factors, and assess the impact on social participation.MethodsA cross-sectional survey was conducted between May and July 2022 among PwDs in Nepal, with a sample of 371. The Explanatory Model Interview Catalog (EMIC) stigma scale and P-scale suitable for people affected by stigmatized conditions were used, and the generated scores were analyzed. One-way ANOVA was performed to determine group differences for sociodemographic variables, and linear regression and correlational analysis were used to identify their association and measure the strength and direction of the relationship.ResultsThe mean stigma score was 16.9 (SD 13.8). 42% of respondents scored higher than the mean. The scores differed significantly by disability type, caste and ethnicity, education, occupation, and household wealth. Over 56% reported participation restriction, and 38% had severe/extreme restriction. Approximately 65% of participants with intellectual disabilities, 53% with multiple disabilities, and 48.5% of persons with severe or profound disabilities experienced severe or extreme restrictions. Perceived stigma had a positive correlation with Disability type (r = 0.17, P < 0.01) and negative correlations with Severity of disability (r= -0.15, P < 0.05), and Household wealth (r= -0.15, P < 0.01). Education was inversely associated with both stigma (r= -0.24, P < 0.01), and participation restriction (β= -9.34, P < 0.01). However, there was no association between stigma and participation restriction (β= -0.10, P > 0.05).ConclusionAll participants exhibited stigma in general; however, the severity varied based on disability type, level of education, and sociocultural circumstances. A large proportion of participants reported facing a high degree of restrictions in participation; however, no association was detected between perceived stigma and participation restriction. A significant negative linear correlation was observed between education and participation restriction. Stigma reduction programs focusing on education and empowerment would be especially important for overcoming internalized stigma and increasing the participation of PwDs.

Parents’ tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study

ABSTRACT Background Parents’ tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge. Method We conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their child, based upon video recordings they made of their child’s behaviour, and analysed the data thematically. Results Parents described their tacit knowledge as the capacity to read their child’s subtle signs, or to sense and “just know” their child’s situation. They had developed this knowledge because of their shared history of proximity and interaction and emphasised that it was crucial in ensuring their children’s needs are met. Conclusions We describe how parents’ tacit knowledge contributes to “good care” for persons with PIMD, interpret the implications for (medical) care practice, and discuss ways to deal with its limitations.

Auditory Learner

Auditory Learner

A scoping review of AAC interventions for children and young adults with simultaneous visual and motor impairments: Clinical and research Implications

Individuals with multiple disabilities are among the most challenging to serve and AAC teams often lack direction in determining effective interventions. The purpose of this scoping review was to summarize the research evidence on AAC interventions for individuals with complex communication needs and simultaneous motor, and visual impairments as part of their multiple disabilities; to consider implications for practice; and to determine gaps and directions for future research. A total of 27 studies were identified and reviewed, involving 55 unique participants with multiple disabilities. Most studies focused on direct intervention to increase requesting or choice-making, with little focus on social communication. Only two studies focused on training communication partners. Results indicated that AAC interventions can be highly effective to increase communication for individuals with multiple disabilities. However, there is an urgent need for increased rigor and more detailed participant information in future AAC intervention research with this population. Future research should investigate AAC intervention to improve social communication and increase language development, not just expression of needs and wants. Future research should focus on the needs of individuals with multiple disabilities from culturally and linguistically diverse backgrounds and on implementation of AAC within natural environments.

Oropharyngeal dysphagia in children with multiple disabilities.

This study aimed to investigate the prevalence of oropharyngeal dysphagia among institutionalised children with multiple disabilities, a topic with limited literature coverage. The study employed a questionnaire, specifically the F-PEDI-EAT-10, to screen for dysphagia in children. Trained nurses administered the questionnaire to the participants. The study included 117 children with multiple disabilities (51.3 per cent boys and 48.7 per cent girls) with an average age of 14 ± 4.7 years. The questionnaire revealed that 53 per cent (n = 62) of the children had a positive score and, surprisingly, 29 per cent of them (n = 18) did not have a confirmed diagnosis of oropharyngeal dysphagia. Notably, children with a positive F-PEDI-EAT-10 score had a significantly higher prevalence of pneumopathy and undernutrition compared with those with a negative score. This study underscores the high prevalence of oropharyngeal dysphagia among children with multiple disabilities, a condition that is often underdiagnosed.

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&lt;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&lt;0.024), as well as the correlation between adaptive and independence skills (rs = 0.733, p&lt;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

Do age, gender, and subjective health-related factors influence health-related life satisfaction in people with disabilities who are physically active?: a secondary analysis.

This study explored the factors influencing the health-related life satisfaction of people with disabilities who engaged in physical activity, by age and gender. A secondary analysis was conducted of the 2020 Third Disability and Life Dynamics Panel (2021). The participants were 2,796 people who performed regular physical activity at least once a week. The variables selected were disability-related factors (degree of disability, multiple disabilities, and type of disability), sociodemographic factors (age, gender, living alone, and mean monthly family income), and health-related factors (amount of physical activity, self-esteem, depression, chronic disease, subjective health, and health-related life satisfaction). Descriptive statistics, the chi-square test, the t-test, two-way analysis of variance, and multiple regression analysis were conducted. In total, 58.0% of participants were male, and 42.0% were female. For age groups, 14.4% were children/adolescents (0-19 years), 42.6% were adults (20-59 years), and 43.0% were seniors (≥60 years). The mean score for health-related life satisfaction was 5.0±2.15 out of 10. Adults and seniors whose level of physical activity met or exceeded recommendations had higher subjective health. Moreover, men had better subjective health than women in seniors. Health-related life satisfaction was higher among those who had higher self-esteem, were not depressed, did not have chronic diseases, and had better subjective health. Gender significantly influenced health-related life satisfaction in children/ adolescents and seniors. Disability-related factors were significant in adults, and health-related factors were significant in all age groups. Therefore, these factors should be considered when designing interventions to promote subjective health and health-related life satisfaction of people with disabilities.

Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities.

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.

Cochlear implantation outcomes in children with multiple disabilities: a topic that’s worth revisiting

ObjectivesTo determine the benefits of cochlear implantation in hearing loss children with multiple disabilities (MD) in terms of auditory outcomes, speech performance, and their quality of life. MethodsThis was a cross sectional study from January 2019 to December 2020 in which thirty-one children with hearing loss and multiple disabilities were evaluated. Their improvement in auditory and speech performances were assessed using Categories of Auditory Performance version II (CAP-II) and the Speech Intelligibility Rating (SIR) scales. The assessment was done at 6-month intervals, with the baseline evaluation done at least six months after activation of the implant. Parents were asked to fill the Parents Evaluation of Aural/Oral Performance of Children (PEACH) diary and Perceived Benefit Questionnaire (PBQ) to evaluate the child’s quality of life. ResultsAll 31 children have Global Developmental Delay (GDD), with 11 having an additional disability. Both mean CAP-II and SIR scores showed significant improvement with increased hearing age (p < 0.05) after 6-month intervals. In addition, 20 out of 31 children (64.5%) have achieved verbal communication after implantation. The mean PEACH score in quiet was significantly better than in noise (p = 0.007) and improved with the increased of hearing age. The majority of parents (96%‒100%) perceived a cochlear implant as beneficial to their child in terms of auditory response, awareness, interaction, communication, and speech development. ConclusionsCochlear implantation had shown benefits in children with multiple disabilities. Outcome measures should not only focus on auditory and speech performances but the improvement in quality of life. Hence, individualized each case with realistic expectation from families must be emphasized in this group of children. Level of evidenceLevel 3.

Activities of the Non-Public Primary School at the Aid for People with Disabilities Foundation for children and young people with multiple disabilities

This article presents the activities undertaken for the benefit of children and young people with multiple disabilities by those involved in the establishment and running of the Non-Public Primary School at the Foundation for Assistance to People with Disabilities. The historical aspect of the moment of initiation and continuous development of the establishment is presented, as well as the current aims and directions of its activities. The mission of the establishment is to prepare pupils, within the scope of their individual abilities and needs, to function independently in everyday life, as well as to develop, in a broad sense, their ability to build social relationships and communicate with others. At present, the school, thanks to its many years of experience, highly qualified, interdisciplinary staff and proven methods and forms of cooperation matched to the individual needs and capabilities of the child and his or her family, provides nearly a hundred students, including those with coupled disabilities and profound intellectual disabilities, with professional interactions in the field of motor, pedagogical, speech therapy and psychological therapy.

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.

Food Insecurity Among Community College Caregivers During the COVID-19 Pandemic

Objective: The purpose of this paper was to examine variables associated with food insecurity among community college caregivers during the COVID-19 pandemic. Methods: We used data from a multi-institutional survey of 15,051 caregivers enrolled at 130 community colleges in 42 states in fall 2020. We used a logistic regression to examine whether demographic, academic, caregiving-related, financial, or COVID-19-related variables were associated with caregivers’ food insecurity. Results: Over half (52%) of community college caregivers experienced food insecurity. Transgender caregivers, first-generation caregivers, and caregivers who were divorced or single, had multiple disabilities, were previously in foster care, and had a family that experienced trouble making ends meet growing up had significantly ( p &lt; .05) higher probabilities of experiencing food insecurity. Community college caregivers who used childcare and those with at least one child up to 12 years old also had increased probabilities of experiencing food insecurity. Moreover, caregivers who felt childcare was not affordable and believed that they did not earn enough money to make employment worthwhile after paying for childcare expenses had higher probabilities of experiencing food insecurity, as did those who experienced housing insecurity and used Pell grants, student loans, and support from friends or family to pay for college. Losing a job, experiencing cuts to work hours or wages, employment as a frontline worker, and contracting COVID were associated with higher probabilities of food insecurity. Contributions: Community college caregivers experienced high rates of food insecurity during the pandemic and some caregivers were at greater risk of exacerbated probabilities of food insecurity. We advocate for targeted interventions, wraparound services, and increased advocacy for legislation to support student caregivers.