ABSTRACT
PURPOSE: Down syndrome (DS) is a common abnormality associated with anorectal malformation (ARM) and Hirschsprung's disease (HD). However, quality of life (QOL) in ARM and HD patients with DS is under-researched. This study compares parent-reported QOL and bowel function in ARM and HD patients with DS to those without. METHODS: Between December 2020 to February 2023, parents of ARM and HD patients with and without DS aged 3-17 years who had undergone surgery > 12 months prior at four tertiary referral centers were recruited. We used the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales, General Well-Being (GWB) Scale and Family Impact (FI) Module questionnaires, and the Rintala bowel function score (BFS). RESULTS: There were 101 ARM, 9 (8.9%) of whom had DS; and 87 HD, of whom 6 (6.9%) had DS. Parent-reported Core scores in ARM and HD with DS were comparable to those without DS. However, ARM and HD with DS had worse scores in the FI Module and bowel function than those without DS. CONCLUSION: Although parent-reported QOL in ARM and HD with DS is similar to those without DS, family impact and BFS are worse. Our findings are limited by small sample size in proportion of DS patients.
Subject(s)
Anorectal Malformations , Down Syndrome , Hirschsprung Disease , Parents , Quality of Life , Humans , Hirschsprung Disease/surgery , Hirschsprung Disease/physiopathology , Hirschsprung Disease/complications , Hirschsprung Disease/psychology , Male , Female , Anorectal Malformations/complications , Anorectal Malformations/surgery , Child , Cross-Sectional Studies , Adolescent , Down Syndrome/complications , Down Syndrome/psychology , Down Syndrome/physiopathology , Child, Preschool , Parents/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: Typically-developing siblings of individuals with Down Syndrome often experience complex emotions towards their sibling. This study explored how social support, personal resources (optimism, sense of coherence [SOC]), and individual variables (sex, religious affiliation, siblings' functionality) may impact emerging adult siblings' emotions toward their sibling with Down Syndrome. METHODS: Participants were 292 siblings of individuals with DS ranging in age from 18-27 (M=21.54, SD=2.50). Participants completed self-report questionnaires exploring optimism, SOC, support, and acceptance. RESULTS: Higher levels of support and optimism were positively associated with positive emotions, and higher SOC with lower levels of negative emotions. Siblings' functionality and religious affiliation interacted with variables to predict emotions. CONCLUSIONS: This study contributes to a greater understanding of how emotions may play a role in sibling relations during the emerging adulthood stage. It also provides unique insight into how religious affiliation may be associated with more positive outcomes for siblings.
Subject(s)
Down Syndrome , Emotions , Sibling Relations , Siblings , Social Support , Humans , Down Syndrome/psychology , Male , Female , Adult , Young Adult , Siblings/psychology , Adolescent , Sense of Coherence , Optimism/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: Down syndrome (DS) is one of the most common chromosomal abnormalities, and children with DS have increased risks of receiving diagnoses of specific comorbidities. AIMS: This study aimed to assess the frequencies and relationships between sleep problems, gastrointestinal (GI) symptoms, comorbid psychopathology, and challenging behavior. METHODS AND PROCEDURES: The Children's Sleep Habits Questionnaire, Gastrointestinal Symptom Inventory, Autism Spectrum Disorder-Comorbid for Children, and Behavior Problems Inventory-Short Form were completed by 123 parents of children and adolescents with DS. OUTCOMES AND RESULTS: The frequency of GI symptoms was 74.8 %, with high frequencies also found for: sleep problems (100 %), challenging behavior (100 %), and moderate to severe levels of comorbid psychopathology (tantrum=80 %; repetitive behavior=63 %; avoidant behavior=82 %; worry/depressed=61 %; conduct behavior=100 %; over-eating=100 %; under-eating=100 %). A significant moderate correlation was found between total GI symptoms and self-injurious behavior frequency. Children who presented with abdominal pain engaged in self-injurious behavior more frequently than those with no abdominal pain. CONCLUSIONS AND IMPLICATIONS: Findings indicated a high frequency of sleep problems, comorbid psychopathology, GI symptoms, and challenging behavior and demonstrated a relationship between GI symptoms and self-injurious behavior in children and adolescents with DS. This research illustrated the importance of investigating comorbid conditions in individuals with DS. WHAT THIS PAPER ADDS?: Down Syndrome (DS) is a genetic condition characterized by trisomy 21 and is a leading cause of intellectual disability worldwide. The prevalence of DS is commonly associated with advanced maternal age and is associated with multiple comorbid conditions. The current study aimed to investigate the frequency of and relationship between sleep problems, gastrointestinal symptoms, comorbid psychopathology, and challenging behavior in children and adolescents with DS. High-frequency levels were found for sleep problems (100 %), challenging behavior (100 %), gastrointestinal symptoms (74.8 %), and moderate to severe levels of the different comorbid psychopathologies (tantrum=80 %; repetitive behavior=63 %; avoidant behavior=82 %; worry/depressed=61 %; conduct behavior=100 %; over-eating=100 %; under-eating=100 %). Results indicated a significant difference in self-injurious behavior frequency between individuals who presented with abdominal pain and those who did not. This study is the first to investigate the relationship of multiple comorbid conditions in a sample of children with DS. This paper adds to the literature by demonstrating the frequency of a number of comorbid conditions in children and adolescents with DS. The paper also adds novel findings to the literature by investigating the relationships between comorbid conditions in this population. The findings of this paper highlighted the frequency and comorbidities that exist between gastrointestinal symptoms, sleep problems, comorbid psychopathology, and challenging behavior. Analyses indicated that those who presented with abdominal pain, engaged in self-injurious behavior more frequently. Sleep problems, gastrointestinal symptoms, comorbid psychopathology, and challenging behavior in children and adolescents with Down Syndrome.
Subject(s)
Abdominal Pain , Comorbidity , Down Syndrome , Gastrointestinal Diseases , Problem Behavior , Sleep Wake Disorders , Humans , Down Syndrome/epidemiology , Down Syndrome/psychology , Down Syndrome/complications , Child , Female , Male , Adolescent , Sleep Wake Disorders/epidemiology , Sleep Wake Disorders/psychology , Gastrointestinal Diseases/epidemiology , Gastrointestinal Diseases/psychology , Problem Behavior/psychology , Abdominal Pain/epidemiology , Abdominal Pain/psychology , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/psychology , Self-Injurious Behavior/epidemiology , Self-Injurious Behavior/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: Parents' conceptualizations of adulthood for their emerging adults with Down syndrome have the potential to impact the transition planning process as families prepare for life after graduation. AIMS: This study aimed to explore parent perceptions of the meaning of adulthood for their emerging adults with Down syndrome. METHODS: In this qualitative study, we interviewed 11 parents of emerging adults with Down syndrome using phenomenological methodology and analysed these data using thematic analysis. RESULTS: Three topics emerged: (1) Parents' constructions of the meaning of adulthood; (2) Parents' perceptions about the transition to adulthood; and (3) Parents' perceptions of current adult life skills. Ten themes arose out of these topics. CONCLUSIONS: Parents expressed ambivalence about the meaning of adulthood for their emerging adults with Down syndrome, sharing that in some ways they were adults and in others they were not. The meaning of adulthood was closely tied to obtained skills, particularly those related to personal safety.
Subject(s)
Down Syndrome , Parents , Qualitative Research , Humans , Down Syndrome/psychology , Male , Female , Adult , Parents/psychology , Young Adult , Middle Aged , AdolescentABSTRACT
Caregiving for disabled individuals among Neanderthals has been known for a long time, and there is a debate about the implications of this behavior. Some authors believe that caregiving took place between individuals able to reciprocate the favor, while others argue that caregiving was produced by a feeling of compassion related to other highly adaptive prosocial behaviors. The study of children with severe pathologies is particularly interesting, as children have a very limited possibility to reciprocate the assistance. We present the case of a Neanderthal child who suffered from a congenital pathology of the inner ear, probably debilitating, and associated with Down syndrome. This child would have required care for at least 6 years, likely necessitating other group members to assist the mother in childcare.
Subject(s)
Down Syndrome , Neanderthals , Down Syndrome/psychology , Humans , Animals , Child , Female , Male , Child, PreschoolABSTRACT
BACKGROUND: Narrative ability is crucial for social participation in everyday and school life but involves different language abilities such as vocabulary and morpho-syntax. This is particularly difficult for individuals who display both language and cognitive impairments. Previous research has identified productive vocabulary as a possible key factor for narrative performance in individuals with Down syndrome. Considering a close connection between lexical and morpho-syntactic performance within language acquisition and the distinct impairments that individuals with Down syndrome display concerning their morpho-syntactic skills, the nature of a relation between vocabulary and narrative skills under the influence of grammatical deficits requires further investigation. METHODS: Narrations were obtained from 28 children and adolescents with Down syndrome (aged 10;0-20;1) using a non-verbal picture book. Narrative abilities were rated using the Narrative Scoring Scheme across seven narrative aspects (including macro- and microstructure). Vocabulary analyses and morpho-lexical context analyses including verb and conjunction enumerations, evaluation of verb position and MLU were conducted. Findings from the transcript analysis have been supplemented with data from standardized language measures evaluating expressive lexical and morpho-syntactic development. A multiple regression analysis was conducted to identify significant predictors for narrative outcome in the participants with Down syndrome. RESULTS: Lexical analyses revealed a high heterogeneity in production of subordinating conjunctions as a link between lexical and morpho-syntactic abilities. Comparisons of standardized and narrative data demonstrated differences in subordinate clause production depending on the elicitation setting. A multiple regression analysis identified the number of different verbs in the narrative task as the most significant predictor for narrative performance in individuals with Down syndrome. DISCUSSION AND IMPLICATIONS: The findings of this study contribute to the knowledge regarding factors that influence narrative performance in individuals with language impairment. A differentiated verb lexicon can be identified as the key ability for reaching advanced narrative skills in participants with Down syndrome. These findings are of clinical relevance for therapeutic and educational support and contribute to an understanding of the relation between strengths in vocabulary and morpho-syntactic weaknesses in individuals with Down syndrome within communicative participation.
Subject(s)
Down Syndrome , Narration , Vocabulary , Humans , Down Syndrome/psychology , Down Syndrome/physiopathology , Male , Female , Child , Adolescent , Young Adult , Language Development Disorders/psychology , Language Development Disorders/physiopathology , Language Tests , LinguisticsABSTRACT
There is convincing evidence that training spatial abilities leads to improved mathematics performance in typically developing (TD) children. However, a lack of information on mathematical development and spatial-mathematical associations in people with Down syndrome (DS) hinders the translation of these interventions. Here, we established developmental trajectories of mathematics and explored whether spatial ability predicts attainment on different mathematics measures in individuals with DS. Participants with DS (n = 36; ages 9-35 years) and TD children (n = 132; ages 4-11 years) completed three groups of tasks: spatial tasks assessing different subdomains of spatial thinking; mathematics tasks assessing early mathematics skills, mathematical reasoning, arithmetic, and geometry; and IQ tasks. The developmental trajectories of mathematics performance against mental age revealed similar starting points of the trajectories and similar rates of development for DS and TD groups. Furthermore, after controlling for verbal skills, spatial skills explained 5.8% to 18.1% of the variation in mathematical performance across different mathematics tasks, and the pattern of spatial-mathematical relations was similar for DS and mental age-matched TD groups. This shows that mathematical development in DS groups appears to mirror that in TD children, indicative of delay only. Strong spatial-mathematical relations were observed for individuals with DS, like those seen for TD participants. This is the vital preliminary knowledge needed to support the design and use of spatial intervention for improving mathematics in individuals with DS.
Subject(s)
Down Syndrome , Mathematics , Thinking , Humans , Down Syndrome/psychology , Child , Male , Female , Adolescent , Child, Preschool , Adult , Young Adult , Thinking/physiology , Space Perception/physiology , Child Development/physiology , Mathematical ConceptsABSTRACT
Down syndrome (DS) is characterised by a duplication of chromosome-21 and is linked to co-occurring physical and mental health conditions, including low self-efficacy and disturbed mood states. The purpose of this study was to investigate the effects of an eight-week prescribed physical and/or cognitive training intervention on measures of mood disturbance, life satisfaction and self-efficacy in a population of adults with DS. Eighty-three participants (age 27.1 ± 8.0 years) from across five continents volunteered. Participants were assigned using matched groups based upon performance in a modified six-minute walk test to either an exercise (EXE) 3 × 30 min of walking/jogging per week, cognitive training (COG) 6 × 20 min per week, a combined group (COM) or the control (CON) who did not complete any intervention. Profile of Mood States (POMS) were assessed using a five-point scale across 65 categories pre- and post-study as well as upon completion of each week of the intervention. In addition, Satisfaction with Life Scale (SWLS) and self-efficacy using the Generalised Self-Efficacy scale (GSE) were recorded before and after the intervention. GSE increased for all participants by 1.9 ± 5.2 (p = 0.002) from pre- to post-intervention, while POMS showed significant changes for the whole group from pre- to post-intervention for tension (p < 0.001), depression (p < 0.001) and for anger (p < 0.001). In addition, significant correlations were observed between SWLS and ΔTMD, Δtension, Δanger, and Δfatigue (p < 0.05) for EXE. Both COG and EXE provide a framework for empowering enhancements in life satisfaction, self-efficacy and mood states fostering improvements in quality of life.
Subject(s)
Affect , Down Syndrome , Exercise , Personal Satisfaction , Self Efficacy , Humans , Adult , Male , Female , Young Adult , Down Syndrome/psychology , Exercise/psychology , Cognition , Quality of Life , AdolescentABSTRACT
Background and Aim. Down syndrome (DS) is the most common reason for disabilities caused by genetic disorders. Due to the special nature of this disease and the special needs of children with Down syndrome, they are required to receive their families' support. Therefore, the recognition of their problems and needs and also the alternatives for resolving them and promoting their life quality are very useful. Also, since very limited qualitative studies have been conducted, it seems necessary to design a qualitative study. Method. This qualitative study was conducted by the content analysis method and through purposeful sampling method with the participation of 26 participants including 15 mothers, 6 fathers, 3 sisters, and 2 brothers of DS children in 2022-2023. The data were collected through semi-structured interviews. Findings. Using the content analysis method of Graneheim and Lundman (2004), the main theme was "Family self-supporting in protecting Down syndrome children." The subthemes were seven including "trying to find information-support resources," "Giving importance to child's health," "religious beliefs of the family," "child moral education, helping to child's relative self-support," "developing familial support," and "developing child's social interactions." Conclusion and Recommendations. The findings of this study showed that family is the main source of fulfilling the needs of children and their life challenges through using efficient self-support methods. This study introduced family self-support methods in terms of DS children in a way that other families can also manage the problems of their children more efficiently. The present study can be used by trustees of DS to support them and their families. Considering the existence of many problems in children with Down syndrome and the involvement of families, it is suggested that policymakers and community health managers provide the basis for receiving services and social support. For example, it is possible to strengthen the screening systems in the country to diagnose the disease on time and take quick action to solve this problem. Also, by increasing the health insurance coverage and fair distribution of the support resources needed by these people, it promoted the quality of life for them and their families. Also, health policymakers in Iran can take action to increase life expectancy and reduce deaths caused by DS by improving the equitable distribution of health resources and services. Also, public policies should enhance supportive intermediation for prevention and life quality promotion and also decrease health challenges. They are also supposed to lessen the costs of health care. Furthermore, to support social organizations, health service providers and researchers should consider the development of intermediations for the health enhancing and life quality promoting of DS children.
Subject(s)
Down Syndrome , Qualitative Research , Social Support , Down Syndrome/psychology , Down Syndrome/therapy , Humans , Male , Female , Child , Adult , Family/psychology , Quality of Life , Child, Preschool , AdolescentABSTRACT
PURPOSE: Dyadic caregiver-child interactions are commonly used to examine children's language learning environments. However, children frequently interact with multiple caregivers and/or siblings if they come from homes with multiple caregivers and siblings. Thus, we examined if and how caregiver opportunities to respond (OTRs) varied when sampled across three interaction configurations. METHOD: Twelve children with Down syndrome (Mage = 40.82 months) and their biological parents participated in the current study. We collected separate mother-child and father-child dyadic interactions and one family choice interaction (i.e., both caregivers present and occasionally siblings) in families' homes. We analyzed if differences in the caregiver's OTR frequency and type-explicit and implicit-existed among dyadic and family choice configurations. RESULTS: We found that, during family choice interactions, children were exposed to fewer OTRs when combining the total number of father and mother OTRs compared to dyadic caregiver-child interactions. This effect was large for explicit OTRs (mother-dyadic vs. combined family choice: g = -1.99, confidence interval [CI] [-3.00, -1.00]; father-dyadic vs. combined family choice: g = -0.84, CI [-1.84, -0.11]). For implicit OTRs, effects were small for mother-dyadic versus combined family choice (g = -0.34, CI [-1.17, 0.48]) and negligible when comparing father-dyadic with combined family choice (g = -0.08, CI [-0.90, 0.73]). CONCLUSION: Our preliminary findings highlight the need for a more nuanced understanding of children's language learning environments to better understand how caregivers support their children's language development. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25579905.
Subject(s)
Caregivers , Down Syndrome , Humans , Down Syndrome/psychology , Male , Female , Child, Preschool , Caregivers/psychology , Mother-Child Relations , Child Language , Father-Child Relations , Adult , Parent-Child Relations , Family Relations/psychologyABSTRACT
We report a review examining the psychological wellbeing of parents of children with Down syndrome (DS) relative to that of parents of typically developing (TD) children. A systematic search identified 57 relevant studies, which were synthesised meta-analytically. Relative to their counterparts with TD children, mothers and fathers of children with DS reported higher levels of parenting stress (mothers: g = 0.57, 95% CI [0.33, 0.81]; fathers: g = 0.40, [0.24, 0.56]), depressive symptoms (mothers: g = 0.42, [0.23, 0.61]; fathers: g = 0.25, [0.02, 0.48]) and psychological distress (mothers: g = 0.45, [0.30, 0.60]; fathers: g = 0.63, [0.26, 0.99]). Small effects were found for anxiety for mothers (g = 0.16, [0.03, 0.29]), with no differences for fathers (g = 0.03, [-0.25, 0.32]). No group differences were found for positive impact of parenting (mothers: g = -0.09, [-0.25, 0.07]; fathers: g = -0.04, [-0.30, 0.22]), while evidence concerning other positive wellbeing outcomes was limited. No significant moderating effects of child age range, country income level, or group differences in parental education level were identified, but limited subgroup analyses were possible. Raising a child with DS may be associated with elevated stress, depressive symptoms, and psychological distress for mothers and fathers. However, levels of parenting reward appear equivalent to those experienced by parents raising TD children.
Subject(s)
Down Syndrome , Parenting , Parents , Stress, Psychological , Humans , Down Syndrome/psychology , Parenting/psychology , Stress, Psychological/psychology , Child , Parents/psychology , Depression/psychology , Anxiety/psychology , Adult , Psychological DistressABSTRACT
A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis of Down syndrome (DS). Substantial proportions of mothers reported that providers conveyed diagnoses with pity, emphasized negative aspects of DS, and neglected to provide adequate materials explaining DS. This study follows up on the 2003 survey by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in the original study, distributed a mixed-methods survey to families who have had children with DS between 2003 and 2022. Quantitative analysis assessed correlations among responses and differences between the 2003 and 2022 survey groups. Open-ended responses were qualitatively analyzed. Compared to the 2003 findings, parents' perceptions of their postnatal care have not improved (N = 89). Parents are increasingly likely to report that their providers pitied them, omitted positive aspects of DS, and provided insufficient materials describing DS. Substantial proportions of parents reported fear (77%) and anxiety (79%), only 24% described receiving adequate explanatory materials, and parents were 45% likelier to report that physicians discussed negative aspects of DS than positive aspects. Qualitatively, substantial numbers of parents recounted insensitive conduct by providers. These results suggest that despite interventions, parents' experiences of postnatal diagnoses of DS have not improved over time. Certain provider behaviors-such as describing positive aspects of DS and providing comprehensive explanatory materials-can reduce fear and anxiety, pointing to directions for reform.
Subject(s)
Down Syndrome , Parents , Humans , Down Syndrome/diagnosis , Down Syndrome/epidemiology , Down Syndrome/psychology , Parents/psychology , Female , Male , Child , Adult , Surveys and Questionnaires , Postnatal CareSubject(s)
COVID-19 , Down Syndrome , Humans , COVID-19/psychology , COVID-19/epidemiology , Down Syndrome/psychology , India , Female , Adult , Surveys and Questionnaires , Family/psychology , Male , PandemicsABSTRACT
INTRODUCTION: Generally, mothers provide the majority of caring for children who have Down syndrome. They pose challenges not only with regard to the acceptability of the child situation but also with regard to the provision of care for children with DS. AIM: To explore the experiences of mothers parenting children with DS in Indonesia, to give a better understanding of their needs, which is necessary for the delivery of treatment. METHODS: A descriptive qualitative research with content analysis was used. Study participants (15 mothers) were purposively sampled from attendees of a State Special School for students with disabilities. Data was collected via semi-structure interviews and were audio recorded. Participant's statements underwent content analysis, and the principle of trustworthiness was subsequently applied. RESULTS: Five main themes describing participants' experiences were identified: (1) parenting experiences - the impacts, (2) special needs, (3) parenting barriers, (4) parenting facilitators, and (5) mothers' expectations. CONCLUSIONS: The study findings showed that the mothers viewed their situation in both positive and negative ways. Despite the limited sample size in this exploratory study, the results offer new insights into raising a child with DS in a particular cultural setting. IMPLICATIONS FOR PRACTICE: This study offers important information to families and healthcare providers to improve awareness of the disorder and its appropriate management methods. It is important that an exploration of the experiences of mothers will provide healthcare professionals and families with an understanding of the situation. This understanding is essential for the effective management and delivery of treatment.
Subject(s)
Down Syndrome , Mother-Child Relations , Mothers , Parenting , Qualitative Research , Humans , Down Syndrome/psychology , Indonesia , Female , Parenting/psychology , Mothers/psychology , Adult , Child , Male , Child, Preschool , Adaptation, PsychologicalABSTRACT
BACKGROUND: Down syndrome is a genetic disorder that causes physical and cognitive challenges. Identifying the impact of sedentary behavior and physical activity on people with Down syndrome is crucial for early intervention. The purpose of this study is to compare physical activity and sedentary behavior among children with Down syndrome and typically developing children, as well as assess their relationship with quality of life. METHODS: In the cross-sectional study, 67 children between the ages of 6 and 12 were enrolled: 29 in the Down syndrome group and 38 in the typically developing group. Each child wore an ActiGraph wGT3X-BT for seven days. Accelerometer data and quality of life data were analysed. RESULTS: Physical activity and sedentary behavior were not significantly different between the Down syndrome and typically developing groups (p Ë .05). With large effect sizes (partial eta squares ranging from 0.21 to 0.59), typically developing children had a significantly better quality of life than children with Down syndrome. There was a weak positive correlation between moderate physical activity and school performance in children with Down syndrome. For typically developing children, there is a weak negative correlation between light physical activity and physical function, school function, and total paediatric quality of life scale scores. CONCLUSIONS: This study indicates that children with Down syndrome have participated in more physical activities, resulting in a reduction in differences between them and typically developing children. Additionally, typically developing had higher quality of life than children with Down syndrome. For healthcare professionals and educators, these findings provide valuable insights into developing strategies to enhance physical activity for children with developmental disabilities.
Subject(s)
Down Syndrome , Quality of Life , Humans , Child , Cross-Sectional Studies , Down Syndrome/psychology , Saudi Arabia/epidemiology , Exercise/psychologyABSTRACT
BACKGROUND: Pragmatics is an area that can be affected in a wide variety of disorders. In this sense, Syndromic Autism is defined as a disorder in which a causal link is established between an associated syndrome and Autism Spectrum Disorder (ASD). Likewise, Down Syndrome (DS) is one of the main genetically based syndromes in which ASD is described as one of its possible manifestations. In this direction, people with DS are described as social beings whereas in ASD there seems to be a specific alteration of this domain. METHODS: In this study, pragmatic performance was analysed in a sample of 72 participants, where comparisons were made between the scores obtained by children with ASD (n = 24), with DS (n = 24) and with DS + ASD (n = 24). RESULTS: The Social Communication Questionnaire (SCQ), the Block Objective and Criterial Language Battery (BLOC-SR) and the Neuropsychology subtest (NEPSY-II) aimed at Theory of Mind (ToM) identified significant differences between the groups. However, two-to-two comparisons reported no significant differences between DS and DS + ASD. CONCLUSIONS: Although several studies report differences between the three proposed groups, our data seem to suggest that ASD symptomatology in DS is associated with Intellectual Developmental Disorder (IDD). However, the lack of solid scientific evidence regarding comorbid diagnosis makes further research along these lines indispensable. TRIAL REGISTRATION: This study was approved by the Ethics Committee for Social Research at UCLM with reference CEIS-704,511-L8M4.
Subject(s)
Autism Spectrum Disorder , Down Syndrome , Child , Humans , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Down Syndrome/diagnosis , Down Syndrome/complications , Down Syndrome/psychology , Language , Communication , Neuropsychological TestsABSTRACT
This article aims to advance knowledge related to the concept of the 'shame-blame complex' by analysing the accounts and experiences of parents with cognitively disabled children. It draws on 29 interviews with parents of children with Down syndrome and shadowing sessions with one family, carried out in Italy. Results show how the feeling of shame as a consequence of being associated with a disabled child is turned into blame for bad parenting. The sources of this blaming process are twofold: firstly, neoliberalism has disseminated an intensive parenting model based on the imperative of individual responsibility and risk avoidance. Secondly, ableism acts as a network of processes and beliefs that produce a particular kind of self and body as the perfect and complete human being. Participants have been held responsible for their children's condition because they avoided prenatal screening or continued a pregnancy after receiving a positive result. Consequently, parents' moral culpability for their children's diversity and their social marginalisation were enhanced. Although the interviewees resist the shame of being associated with a cognitively disabled child and the blame for bad parenting, they seem unable to escape from the grips of the shame-blame complex. The latter has structural and cultural underpinnings. In an age of 'neoliberal-ableism', this complex is indeed a powerful weapon to erode the rights of families with cognitively disabled members.
Subject(s)
Disabled Children , Parenting , Parents , Shame , Humans , Italy , Female , Parents/psychology , Male , Parenting/psychology , Child , Disabled Children/psychology , Adult , Down Syndrome/psychology , Interviews as TopicABSTRACT
INTRODUCTION: Narratives are enriched by taking the perspective of the protagonists, which can be expressed using reported speech. Nevertheless, the use of reported speech is unaddressed internationally among individuals with Down syndrome. METHOD: Narratives of 28 children and adolescents with Down syndrome were collected using a non-verbal picture book. Occurrence and forms of reported speech were analysed and compared to typically-developing children (TD; n = 33). RESULTS: Participants from both populations use reported speech in their narratives with a comparable proportion. Nevertheless, differences appear concerning forms of direct speech with persons with Down syndrome using more free direct speech than TD-children. DISCUSSION: The results suggest that children and adolescents are able to implement the use of reported speech regardless of their syntactic impairments. Concerning the occurring forms of direct speech, the results might point to cognitive impairments that manifest in limited consideration of the interlocutor's knowledge.
Subject(s)
Cognitive Dysfunction , Down Syndrome , Intellectual Disability , Adolescent , Humans , Speech , Down Syndrome/psychology , NarrationABSTRACT
BACKGROUND: Spatial abilities are fundamental cognitive abilities, have direct applications in daily life, serve as a cognitive foundation for many other complex skills and are used in many specialty jobs. The current study aimed to systematically and comprehensively evaluate the spatial abilities of individuals with Down syndrome (DS) relative to mental ability-matched typically developing (TD) children based on Newcombe and Shipley's double-dimension theoretical framework for classifying spatial abilities. METHODS: Forty adolescents and young adults with DS and 40 TD children completed a nonverbal intelligence test (Raven's), two measures of static-extrinsic skills (water-level task and cart task), two measures of static-intrinsic skills (figure ground and form completion), two measures of dynamic-extrinsic skills (three mountains task and dog task) and two measures of dynamic-intrinsic spatial skills (mental rotation task and block design task). RESULTS: Participants with DS showed reduced performance on two dynamic-intrinsic tasks and one static-extrinsic task (i.e. cart task) relative to TD children. Performances were similar in two dynamic-extrinsic tasks and two static-intrinsic tasks. Analyses of composite accuracy for each spatial category further confirmed deficits in dynamic-intrinsic and static-extrinsic categories for people with DS relative to TD children. CONCLUSIONS: Our results showed an uneven profile of spatial abilities in people with DS relative to ability-matched TD children with particular weaknesses in comprehending and manipulating dynamic-intrinsic and static-extrinsic spatial relations. Furthermore, our research has important clinical implications for more targeted interventions to improve spatial abilities in people with DS.
Subject(s)
Down Syndrome , Spatial Navigation , Adolescent , Child , Humans , Young Adult , Aptitude , Cognition , Down Syndrome/psychologyABSTRACT
Our main objective was to analyze the role of imageability in relation to the age of acquisition (AoA) of nouns and verbs in Spanish-speaking children with Down syndrome (DS) and their peers with typical development (TD). The AoA of nouns and verbs was determined using the MacArthur-Bates CDIs adapted to the profile of children with DS. The AoA was analyzed using a linear mixed-effect model, including factors of imageability, group, and word class, and controlling for word frequency and word length. This analysis showed that high imaginable and short words were acquired early. Children with DS acquired the words later than TD peers. An interaction between imageability and group indicated that the effect of imageability was greater in the DS group. We discuss this effect considering DS children's phonological memory difficulties. The overall results confirm the role that imageability and word length play in lexical acquisition, an effect that goes beyond word class.