A supporting role : mothers' perceptions of their child's developing awareness of Down syndrome

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9–16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome

Talking about learning disability: promoting positive perceptions of people with intellectual disabilities in Scottish schools

Pupils with intellectual disabilities are one of the most bullied groups in the school system and in local communities. Moreover, young people also play a significant role in hate crimes against people with intellectual disabilities of all ages beyond the school gates. This paper describes the development of a research informed program of lessons for children in mainstream secondary schools, aimed at counteracting bullying towards people with intellectual disabilities by promoting empathy and more positive attitudes towards them. A literature review, a review of current practice, and the experiences and views of young people with intellectual disabilities and their families all contributed to the development of the program. Data from subsequent piloting and feasibility work were used to finalize the program which consists of the following five lessons concerning: (i) difference and disability, (ii) an understanding of intellectual disability, (iii) the nature and impact of disablist bullying towards people with intellectual disabilities, and (iv) opportunities for inclusion. One conclusion from this work is that that there needs to be further research to explore the impact of school-based interventions, promoting an understanding of people with intellectual disabilities, in the wider community. Teachers delivering the lessons may have greater influence than transitory campaigns to counteract bullying and promote positive attitudes towards people with intellectual disabilities. However, a first step is to ensure that teachers delivering the lessons have an understanding of people with intellectual disabilities

Health knowledge and the impact of social exclusion on young people with intellectual disabilities

Background: Cognitive impairments are often assumed to underlie individuals’ difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. Method: The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. Results: The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non-disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. Conclusions: The findings suggest social exclusion may contribute to young people with intellectual disabilities’ poorer knowledge of pregnancy and contraception. The results have implications for intervention

Mental health and well-being of fathers of children with intellectual disabilities: systematic review and meta-analysis

BACKGROUND: Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers. AIMS: The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population. METHOD: A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria. RESULTS: Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) -0.38, 95% CI -0.56 to -0.20), as well as higher levels of depression (SMD, -0.46; 95% CI -0.68 to -0.24), stress (SMD, -0.32; 95% CI -0.46 to -0.19) and anxiety (SMD, -0.30; 95% CI -0.50 to -0.10). CONCLUSIONS: There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population

A supporting role: mothers’ perceptions of their child’s developing awareness of Down syndrome

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9–16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome

Absolute Timing of the Crab Pulsar with RXTE

We have monitored the phase of the main X-ray pulse of the Crab pulsar with the Rossi X-ray Timing Explorer (RXTE) for almost eight years, since the start of the mission in January 1996. The absolute time of RXTE's clock is sufficiently accurate to allow this phase to be compared directly with the radio profile. Our monitoring observations of the pulsar took place bi-weekly (during the periods when it was at least 30 degrees from the Sun) and we correlated the data with radio timing ephemerides derived from observations made at Jodrell Bank. We have determined the phase of the X-ray main pulse for each observation with a typical error in the individual data points of 50 us. The total ensemble is consistent with a phase that is constant over the monitoring period, with the X-ray pulse leading the radio pulse by 0.0102+/-0.0012 period in phase, or 344+/-40 us in time. The error estimate is dominated by a systematic error of 40 us in the radio data, arising from uncertainties in the variable amount of pulse delay due to interstellar scattering and instrumental calibration. The statistical error is 0.00015 period, or 5 us. The separation of the main pulse and interpulse appears to be unchanging at time scales of a year or less, with an average value of 0.4001+/-0.0002 period. There is no apparent variation in these values with energy over the 2-30 keV range. The lag between the radio and X-ray pulses may be constant in phase (rotational) or constant in time (linear pathlength). We are not (yet) able to distinguish between these two interpretations.Comment: 11 pages, 2 figure

Listening to mothers: experiences of mental health support and insights into adapting therapy for people with severe or profound intellectual disabilities

Individuals with severe or profound intellectual disabilities may be at a greater risk of developing mental health problems. Despite this, evidence suggests individuals can face difficulties in getting mental health support, and little is known about effective psychological therapies for this population. Hence, this study explored mothers’ experiences of seeking mental health support for their offspring. Semi-structured interviews were conducted with six mothers of adults with severe or profound intellectual disabilities, who had sought mental health support for their offspring. Interviews were audio-recorded and analysed using Interpretative Phenomenological Analysis. The three main themes were ‘A struggle to understand, Challenges to getting mental health support, and A mother’s approach to adapting therapy.’ Mothers found it difficult to recognise signs of emotional difficulties in their offspring. However, they thought that their offspring faced discrimination when accessing services, and that professionals often lacked the knowledge and skills to work with people with severe impairments. The mothers also stressed the importance of the therapeutic relationship and the need to involve carers in therapy. This study highlights the need for more appropriate mental health support for individuals with severe and profound intellectual disabilities. The findings also suggest further research is needed about adapting psychological therapies for this population

Belonging and reciprocity amongst people with intellectual disabilities: a systematic methodological review

Background: Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities. Method: A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed. Results: Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed. Conclusions: More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships

Social and environmental determinants of physical activity and dietary choices in adolescents with intellectual disabilities

PURPOSE: The prevalence of obesity is higher in those with intellectual disabilities than the general population. The aim of the study was to understand the determinants of physical activity and dietary patterns in this population during their final year of school. METHODS: Participants were recruited from four additional support needs (ASN) schools in the Greater Glasgow and South Lanarkshire area of Scotland. Qualitative data were generated from 10 interviews with adolescents with mild-moderate intellectual disabilities. A phenomenological approach was utilised to explore their perceptions of factors influencing their lifestyle behaviours. Transcripts were analysed for recurrent themes relating to PA and diet using a deductive thematic analysis, employing Self-Determination Theory (SDT) as a theoretical framework. Themes were identified based on the explicit meanings of the data, until the point of saturation. RESULTS: Three major themes, each with two respective sub-themes, were identified as influencing participants’ engagement with PA and dietary choices. These were: 1) situatedness (sub themes: school culture and family/home culture); 2) motivation (sub themes: self-efficacy and social connectedness); and 3) wider environmental influences (sub themes: weather and availability and price). Overall, the school and home environments were found to have the strongest influence on participants’ lifestyle behaviours, but in very distinct and often conflicting ways. School structure, high self-efficacy, and social connectedness facilitate increased physical activity and healthier diet in adolescents with intellectual disabilities, whereas home life, low self-efficacy and a lack of social connectedness can serve as a barrier to PA and a healthy diet. CONCLUSIONS: Adolescents’ environment and social interactions play a pivotal role in influencing physical activity and dietary patterns. These findings suggest that influences on the young people in this population’s PA and dietary patterns are multifaceted and complex in nature

A qualitative exploration of the barriers to healthy physical activity and diet in young adults with intellectual disabilities transitioning to adulthood

[Abstract unavailable