This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5–15) of MCS children (likely mainly with mild to moderate ID) identified with ID ( n = 257 siblings) or not ( n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children’s adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores ( OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive ( OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.
Purpose: Fiction has the potential to dispel myths and help improve public understanding and knowledge of the experiences of under-represented groups. Representing the diversity of the population allows individuals to feel included, connected with, and understood by society. Whether women and girls with autism spectrum disorder (ASD) are adequately and accurately represented in fictional media is currently unknown.Design/ methodology/ approach: Internet and library searches were conducted to identify female characters with ASD in works of fiction. Examples of such works were selected for further discussion based on their accessibility, perceived historical and cultural significance, and additional characteristics that made the work particularly meaningful. Findings:The search highlighted a number of female characters with ASD across a range of media, including books, television, film, theatre and video games. Many were written by authors who had a diagnosis of the condition themselves, or other personal experience. Pieces largely portrayed characters with traits that are highly recognized within the academic literature. However, some also appeared to endorse outdated myths and stereotypes. Existing works appear to preferentially portray high functioning autistic women, with limited representation of those whom also have intellectual disability.Originality/value: This is the first exploration of the depiction of ASD in females within fiction. There is a need for more works of fiction responsibly depicting females with ASD, as this can help reduce stigma, develop public awareness and recognition, and increase representation.
A group often overlooked for specific supports in schools are siblings of children with a disability, special educational needs or a serious long-term condition (SEND). In this article we review the current sibling research and identify a lack of literature on interventions, particularly within a school context. We then present a description of Sibs Talk, an example of a new school-based intervention to support siblings. Sibs Talk is a tensession, one-to-one intervention approach for schools to complete with Key Stage 2 children who have a brother or sister with SEND. Finally, we present an initial evaluation of the effectiveness of Sibs Talk, using a pre and post evaluation format with a sample of 55 children from 11 schools. The data presented in this evaluation indicate that Sibs Talk may have contributed to positive outcomes for participating children.
PurposeThe 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort.ParticipantsOver 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level.Findings to dateData were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers.Future plansWave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.
Background Understanding sibling relationship quality is important, as it is associated with mental health outcomes in both childhood and adulthood. Arguably, these relationships are even more important for individuals with intellectual disability, as siblings can be important sources of care, support, advocacy and friendship for one another. The intellectual disability field, however, has a tendency to assume that the relationship lacks reciprocity, and that it is the sibling with intellectual disability who affects the sibling, and that this effect is somehow ‘negative’. Methods We examined whether the behaviour problems and prosocial behaviour of 500 child sibling pairs, where one child has an intellectual disability, were associated with their sibling relationship quality. Measures included the Strengths and Difficulties Questionnaires and the Sibling Relationship Questionnaire. Family poverty, the gender of both children, birth order and whether the child with intellectual disability had autism or Down syndrome were also included in the analyses. Results Confirmatory factor analysis indicated an adequate model fit for the latent variables measuring sibling relationships. The final structural model found that the prosocial behaviour and internalising problems of the children with intellectual disability, their typically developing siblings' prosocial behaviours and sibling birth order were associated with intimacy–companionship in the sibling relationship. The internalising, externalising and prosocial behaviours of the children with intellectual disability, their siblings' externalising behaviours and sibling birth order were associated with antagonism–quarrelling in the sibling relationship. Conclusions We found that the behaviours of both the child with intellectual disability and their sibling were associated with both ‘positive’ and ‘negative’ dimensions of their sibling relationship. This indicates a bidirectional and reciprocal effect.
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