Implementing and evaluating resources to support good maternity care for parents with learning disabilities: A qualitative feasibility study in England.

PROBLEM: Parents with learning disabilities are often disadvantaged and their needs not well understood in maternity services. BACKGROUND: Despite a global vision to improve maternity care, current evidence confirms poor pre- and post-natal care for parents with learning disabilities and their families. Midwives have expressed a need for support in the delivery of good care to this population of parents. AIM: To test the feasibility of implementing and evaluating two evidence-based and values-based resources - the Together Toolkit and Maternity Passport - to support good maternity care for people with learning disabilities. METHODS: A qualitative feasibility study employing semi-structured interviews with 17 midwives and 6 parents who had used the resources in practice in four NHS Trusts in the south of England. FINDINGS: Midwives and parents described how the resources positively impacted maternity care by enabling midwives, connecting networks and empowering parents. Factors affecting effective implementation of the resources were reported at an individual and setting level. DISCUSSION: Staff training to raise awareness and confidence in supporting parents with learning disabilities, and improved systems for recording parent's individual needs are required to enable the delivery of personalised care. CONCLUSION: Reasonable adjustments need to be prioritised to facilitate implementation of resources to support personalised maternity care and to address inequity for parents with learning disabilities. Aspirations for equity suggested commitment from midwives to challenge and overcome barriers to implementation. Recommendations were made to improve the resources and their implementation. These resources are free and accessible for use [www.surrey.ac.uk/togetherproject].

Motor skills and capacities in developmental dyslexia: A systematic review and meta-analysis.

In recent decades, the connections between academic skills, such as reading, writing, and calculation, and motor skills/capacities have received increasing attention. Many studies provided evidence for motor difficulties in children and adolescents with dyslexia, prompting the need for a meta-analysis to combine these multiple findings. Therefore, we conducted a meta-analysis using PsycINFO, Pubmed, and SportDiscus as scientific databases. A total of 572 studies were analyzed following several stringent inclusion criteria, resulting in the inclusion of 23 peer-reviewed studies in the final analysis. Our results showed that children and adolescents with dyslexia displayed significant different performances in multiple motor tasks and these differences persisted also when the type of motor task was considered as moderator in the analysis. The present findings are in accordance with the literature that supports a close connection between reading disabilities and difficulties in motor skills/capacities.

From classroom to life: Gender differences in the persistent effect of learning disabilities on adult depressive symptoms.

Despite the well-established link between adolescent learning disabilities (LD) and mental health, little is known about its long-term consequences. This study examines the relationship between adolescent LD and adult depressive symptoms, with a focus on gender differences and underlying mechanisms. Using a sibling sample from the National Longitudinal Study of Adolescent to Adult Health (N = 3,414), this study estimated sibling fixed effects models to account for unobserved family-level characteristics such as genes and early childhood family and social context. Sobel mediation analyses were conducted to examine social-psychological mechanisms, including the student-teacher relationship, the student-student relationship, and a sense of school belonging. LD in adolescence was positively associated with depressive symptoms in adulthood (b = 0.823, p < 0.05). This association remained robust when controlling for unobserved family-level confounders as well as educational attainment in adulthood. Gender-stratified models showed that only the association for women is statistically significant (b = 1.935, p < 0.05), and its magnitude is nearly three times that of the association for men. Sobel mediation tests indicate that a decline in a sense of school belonging mediates approximately 17% of the association between adolescent LD and adult depressive symptoms. This study's findings suggest that LD in adolescence is associated with an increase in depressive symptoms in adulthood, particularly in women, and a low sense of school belonging may be a potential mediator. Implementing interventions to improve the school integration of girls with LD could be an effective means of improving their long-term mental health.

Challenges of competency-based curriculum in teaching learners with learning disabilities.

Background: Zimbabwean government adopted competency-based curriculum in 2017 as a measure to prepare learners for life and work in an indigenised economy and increasingly globalised and competitive environment. The government also sought to ensure that learners develop skills necessary for lifelong learning in line with the emerging opportunities. Objectives: The purpose of this study was to explore challenges faced by teachers in the implementation of competency-based curriculum to learners with learning disabilities in Mhangura of Makonde District in Zimbabwe. Methods: A constructivist lived experience perspective underpinned this research, in which a single case study was used to interact with participants on challenges faced by teachers in the implementation of competency-based curriculum to learners with learning disabilities. Purposive sampling was used to select nine participants (five males and four females). Data were collected through face-to-face interviews and transcribed verbatim. Four themes emerged from the thematic analysis of data sources. Results: Results indicated that participants were facing several challenges in implementing competency-based curriculum to learners with learning disabilities. Among the cited challenges were negative attitudes towards learners with learning disabilities, poor teacher preparation, lack of resources and poor collaboration. Conclusion: The study concluded that the objectives of competency-based curriculum are noble to learners, but its implementation is not inclusive. Contribution: The study findings will assist in identifying areas that need to be improved and need strengthening. The education policy makers in the country will have a better understanding of challenges faced by teachers in the implementation of competency-based curriculum in Zimbabwe.

Leveraging brain science for impactful advocacy and policymaking: The synergistic partnership between developmental cognitive neuroscientists and a parent-led grassroots movement to drive dyslexia prevention policy and legislation.

Reading proficiency is crucial for academic, vocational, and economic success and has been closely linked to health outcomes. Unfortunately, in the United States, a concerning 63% of fourth-grade children are reading below grade level, with approximately 7%-10% exhibiting a disability in word reading, developmental dyslexia. Research in developmental cognitive neuroscience indicates that individuals with dyslexia show functional and structural brain alterations in regions processing reading and reading-related information, with some of these differences emerging as early as preschool and even infancy. This suggests that some children start schooling with less optimal brain architecture for learning to read, emphasizing the need for preventative education practices. This article reviews educational policies impacting children with dyslexia and highlights a decentralized parent-led grassroots movement, Decoding Dyslexia, which centers the voices of those directly impacted by dyslexia. It utilizes civic engagement practices, advocacy and lobbying on local, federal, and social media platforms, and strong partnerships with scientists to drive systems-level change in educational practices, leading to dyslexia prevention legislation across the U.S. The ongoing partnership continues to address the profound gaps between scientific findings and policymaking to drive systems-level change for contemporary challenges in educational practices within a learning disabilities framework.

The effect of measurement error on the positive predictive value of PSW methods for SLD identification: How buffer zones dispel the illusion of inaccuracy.

Patterns of Strengths and Weaknesses (PSW) methods are widely used for identifying specific learning disabilities (SLDs). Several researchers, however, have reported that the diagnostic accuracy of PSW methods is unacceptably low when strict thresholds were used to identify students with SLDs. We believe these findings give a misleading impression of the magnitude of the diagnostic errors that are likely to arise in PSW assessments. In a simulation study of 10 million cases using a simplified PSW method for demonstration, most of what have been called diagnostic errors were cases in which observed scores and true scores fell on opposite sides of a strict threshold but were still within a buffer zone the size of a typical measurement error. Because small score differences do not result in meaningfully different case conceptualizations, the use of buffer zones reveals that previous estimates of the diagnostic accuracy of PSW methods are misleadingly low. We also demonstrate that diagnostic decisions become increasingly reliable when observed scores are comfortably distant from diagnostic thresholds. For practitioners, we present a flowchart and practical guidelines to improve the accuracy and stability of SLD identification decisions.

Diverse learners: learning disabilities and quality of life following mind-body and health education interventions for adults with neurofibromatosis.

PURPOSE: Neurofibromatosis (NF) is associated with low quality-of-life (QoL). Learning disabilities are prevalent among those with NF, further worsening QoL and potentially impacting benefits from mind-body and educational interventions, yet research on this population is scarce. Here, we address this gap by comparing NF patients with and without learning disabilities on QoL at baseline and QoL-related gains following two interventions. METHODS: Secondary analysis of a fully-powered RCT of a mind-body program (Relaxation Response Resiliency Program for NF; 3RP-NF) versus an educational program (Health Enhancement Program for NF; HEP-NF) among 228 adults with NF. Participants reported QoL in four domains (Physical Health, Psychological, Social Relationships, and Environmental). We compare data at baseline, post-treatment, and 12-month follow-up, controlling for intervention type. RESULTS: At baseline, individuals with NF and learning disabilities had lower Psychological (T = -3.0, p = .001) and Environmental (T = -3.8, p < .001) QoL compared to those without learning disabilities. Both programs significantly improved all QoL domains (ps < .0001-0.002) from baseline to post-treatment, regardless of learning disability status. However, those with learning disabilities exceeded the minimal clinically important difference in only one domain (Psychological QoL) compared to three domains in individuals without learning disabilities. Moreover, those with learning disabilities failed to sustain statistically significant gains in Psychological QoL at 12-months, while those without learning disabilities sustained all gains. CONCLUSION: Adults with NF and learning disabilities have lower Psychological and Environmental QoL. While interventions show promise in improving QoL regardless of learning disabilities, additional measures may bolster clinical benefit and sustainability among those with learning disabilities.

'Why are we stuck in hospital?' Barriers to people with learning disabilities/autistic people leaving 'long-stay' hospital: a mixed methods study.

Background: Transforming care so that people with learning disabilities and/or autistic people can receive support at home rather than in hospital settings is a key priority, but progress has been slow. Despite significant national debate, little previous research has engaged directly with people in hospital, their families or front-line staff to understand the issues from their perspectives. Objectives: This research seeks to better understand the experiences of people with learning disabilities and/or autistic people in long-stay hospital settings, their families and front-line staff - using this knowledge to create practice guides and training materials to support new understandings and ways of working. Design: Following a structured review of the literature, we sought to work with up to 10 people with learning disabilities and/or autistic people in three case-study sites (2021-22), supplementing this with interviews with family members and commissioners; interviews/focus groups with hospital staff, social workers, advocates and care providers; information from case files; and observations of multidisciplinary meetings. Setting: Three 'long-stay' hospital settings in England. Participants: Twenty-seven people in hospital, together with families, health and social care staff and commissioners. Results: • People in hospital report widespread frustration, feel that hospital environments are not conducive to getting/staying well, and face multiple barriers to leaving hospital. Without someone to fight for them, people struggle to overcome the inertia built into our current systems and processes. • Front-line staff are equally frustrated and describe a complex and seemingly dysfunctional system which they find almost impossible to navigate. • Hospital staff from different professional backgrounds do not have a shared sense of how many people really need to be in hospital or how many people could be cared for in different settings - suggesting that different definitions, world views and professional judgements might be at play. • Hospital staff are frustrated about what they see as the difficulty of discharging people into community services, while community services are equally frustrated about what they see as a risk-averse approach which they feel can lack an up-to-date knowledge of what is possible to achieve in the community. • Despite over a decade of policy attempts to resolve these issues, very significant barriers remain. Limitations: This research explored the experiences of a small number of people, but has done so in significant depth. The research was undertaken in secure settings, during COVID and in a difficult external policy and practice context, and so has had to be very flexible and empathetic in order to build relationships and make the research possible. Future research could helpfully consider the needs of people from black and minority ethnic communities, the extent to which the experiences of people on forensic pathways are similar to/different from other people's experiences (including perspectives from the criminal justice system), and what happens to people in the long term after they leave hospital. Conclusions: Working to make the voices of people with learning disabilities and/or autistic people (as well as the staff who support them) centre stage is complex and sensitive. However, this lived experience/practice knowledge is a crucial resource if we are going to develop better policy and practice solutions in the longer term. Study registration: This study is registered at www.researchregistry.com (researchregistry6124). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130298) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 3. See the NIHR Funding and Awards website for further award information.

Around 2000 people with learning disabilities and/or autistic people are living in hospital. This can be for many years. This is a real problem because hospitals: are not designed to help people to lead ordinary lives; are expensive; can be far away from people's homes and families; have had a number of abuse scandals. Despite this, there is little research on why people remain stuck in such settings. In particular, previous research often fails to talk directly to people with learning disabilities, their families and staff. Unless we listen to these voices we will not find solutions to these problems. Too many people will therefore remain in hospital unnecessarily. This is sensitive work. It requires skills in working: with people who may not communicate verbally; with people who might be very angry, scared and distressed; where there can be tensions around what is best. We therefore included an experienced team who could carry out such in-depth work in a way that suits the needs of the individual. We also worked with a group of people with learning disabilities and/or autistic people and their families to help us do our work well. We found that: lots of people are still stuck in hospital; they are very frustrated and distressed; hospital is a difficult place to be while you are waiting to leave. Once you are in it is very difficult to get out; health and social care staff are also very frustrated. They find it almost impossible to help people leave hospital; hospital staff and community services find it difficult to work with each other; government has promised to solve this for more than 10 years. However, there are still lots of problems.

Are students with learning disabilities correctly diagnosed in Turkey?

There has been an ongoing debate on how to diagnose learning disability (LD), with experts proposing different approaches. Very limited research is available on the diagnosis of LD in Turkey. This study aims to analyze the problems related to the diagnosis of LD in Turkey. For this purpose, the intelligence test results of the diagnosed students, the opinions of the teachers who referred them for the diagnosis, and the views of the child psychiatrists and psychological counselors involved in the diagnosis were examined. The results showed that the IQ-Achievement Discrepancy approach is implemented in Turkey. It was also revealed that the students' Wechsler Intelligence Scale for Children (WISC-R) average score was 80.31, and teachers mostly reported the weaknesses of the students during the diagnosis process. Psychological counselors and psychiatrists pointed out the outdatedness of the tools used in the diagnosis, the limited number of measurement instruments to be used in the diagnosis, referral of too many students, and the lack of specialists to work in the diagnosis. The results are discussed on the basis of diagnostic approaches.

The oral health of adults with learning disabilities: A secondary analysis of the Adult Dental Health Survey 2009.

OBJECTIVES: Adults who have learning disabilities are a vulnerable group, little is known about their oral health and how this affects their quality of life. The aims of this secondary analysis of data from the 2009 Adult Dental Health Survey (ADHS) were to describe the oral health status of adults with learning disabilities, determine if severity of learning disability is associated with oral health and identify some of the methodological complexities of working with this population. The survey yields the most recent representative data on the oral health of adults with learning disabilities in England and importantly, contains information about oral health related quality of life (OHRQoL). BASIC RESEARCH DESIGN: Secondary analysis of data from a supplemental survey of adults with learning disabilities collected alongside the 2009 ADHS. PARTICIPANTS: 607 participants with a diagnosed learning disability aged 18 years and over. RESULTS: Adults with learning disabilities had similar levels of active dental caries, fewer natural teeth, and fewer fillings than comparable participants from the general population. Self-reported oral and general health were worse for adults with learning disabilities than the general population. Possible associations between the severity of learning disability and the numbers of decayed, missing or filled teeth were identified. However, large amounts of missing data limited the analysis. CONCLUSIONS: There are important questions relating to the accessibility of existing self-reported oral health questionnaires and the reliability of proxy-reported questions about OHRQoL that should be addressed to give a fuller picture of the oral health of adults with learning disabilities.

How appropriate are referral letters written by school principals to a learning disability clinic? A retrospective audit.

This retrospective study analyzed the quality of 1069 referral letters written by school principals to our learning disability clinic. Utilizing a self-devised checklist having four domains (with 26 items), the audit revealed that in only nine (34.6%) items, the necessary information was available in >90% of referral letters.

Feasibility, Acceptability, and Usefulness of a Screening Tool for Caregiver Learning Differences in Early Childhood Home Visiting: Staff and Caregiver Perspectives.

Early childhood home visiting programs are well positioned to improve equity and reduce health disparities for families headed by caregivers with intellectual disabilities and other learning differences. Early identification of learning differences through screening may help home visiting staff tailor services and thus improve family engagement and outcomes. Using a mixed methods design, this study assessed potential determinants and outcomes related to implementation of a screening tool for learning differences adapted for the home visiting context. Participants were six home visiting staff and nine caregivers from multiple home visiting programs in one state. Staff completed surveys at enrollment and each time they conducted a screen with a caregiver. Staff also completed semi-structured interviews after conducting screens with at least two caregivers. Caregivers completed semi-structured interviews after taking part in a screen. At study enrollment, staff felt it was important to know if caregivers had learning differences, yet some believed caregivers would not like being asked about them. Survey and interview data aligned with theoretical determinants of implementation success, including staff competencies related to screening (e.g., knowledge, skills), perceived fit of screening with staff role and organizational context, and beliefs that the screening would improve engagement of caregivers and service delivery. Staff perceived the tool to be acceptable, feasible, and useful, although some acknowledged that caregivers might feel uncomfortable if the tool was not used carefully. Overall, caregivers found the tool to be acceptable and most believed it was helpful for the home visitor to have information about their learning experiences and needs. Findings lend initial support for the use of an adapted screening tool to identify potential learning differences.

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review.

BACKGROUND: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. METHODS: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. RESULTS: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. CONCLUSION: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients.

Neurocognitive mechanisms of co-occurring math difficulties in dyslexia: Differences in executive function and visuospatial processing.

Children with dyslexia frequently also struggle with math. However, studies of reading disability (RD) rarely assess math skill, and the neurocognitive mechanisms underlying co-occurring reading and math disability (RD+MD) are not clear. The current study aimed to identify behavioral and neurocognitive factors associated with co-occurring MD among 86 children with RD. Within this sample, 43% had co-occurring RD+MD and 22% demonstrated a possible vulnerability in math, while 35% had no math difficulties (RD-Only). We investigated whether RD-Only and RD+MD students differed behaviorally in their phonological awareness, reading skills, or executive functions, as well as in the brain mechanisms underlying word reading and visuospatial working memory using functional magnetic resonance imaging (fMRI). The RD+MD group did not differ from RD-Only on behavioral or brain measures of phonological awareness related to speech or print. However, the RD+MD group demonstrated significantly worse working memory and processing speed performance than the RD-Only group. The RD+MD group also exhibited reduced brain activations for visuospatial working memory relative to RD-Only. Exploratory brain-behavior correlations along a broad spectrum of math ability revealed that stronger math skills were associated with greater activation in bilateral visual cortex. These converging neuro-behavioral findings suggest that poor executive functions in general, including differences in visuospatial working memory, are specifically associated with co-occurring MD in the context of RD. RESEARCH HIGHLIGHTS: Children with reading disabilities (RD) frequently have a co-occurring math disability (MD), but the mechanisms behind this high comorbidity are not well understood. We examined differences in phonological awareness, reading skills, and executive function between children with RD only versus co-occurring RD+MD using behavioral and fMRI measures. Children with RD only versus RD+MD did not differ in their phonological processing, either behaviorally or in the brain. RD+MD was associated with additional behavioral difficulties in working memory, and reduced visual cortex activation during a visuospatial working memory task.

Academic Achievement and Satisfaction Among University Students With Specific Learning Disabilities: The Roles of Soft Skills and Study-Related Factors.

Understanding the individual qualities sustaining students with and without specific learning disabilities (SLDs) is key to supporting their academic achievement and well-being. In this study, we investigated the differences between students with and without SLDs in terms of intraindividual factors (soft skills and study-related factors), academic and nonacademic outcomes (achievement, academic and life satisfaction), and the relationships between such intraindividual factors and the three outcomes. A total of 318 students (79 males; Mage = 22.7; SD = 3.56; age range = 19-45 years; 147 with SLDs) completed self-reported questionnaires and a measure of fluid intelligence. The results showed that students with SLDs reported higher creativity but lower academic self-efficacy, study resilience, and academic achievement, with small-to-medium effect sizes. In both groups, achievement significantly positively related to academic self-efficacy and negatively to creativity. Life satisfaction was positively related to study resilience; and academic satisfaction was related to critical thinking, curiosity, and academic self-efficacy. Nurturing such intraindividual factors can benefit students with and without SLDs.

Assessment of Specific Learning Disabilities and Intellectual Disabilities.

We review literature related to the assessment and identification of Specific Learning Disabilities (SLD) and Intellectual Disabilities (ID). SLD and ID are the only two disorders requiring psychometric test performance for identification within the group of neurodevelopmental disorders in Diagnostic and Statistical Manual - 5. SLD and ID are considered exclusionary of one another, but the processes for assessment and identification of each disorder vary. There is controversy about the identification and assessment methods for SLD, with little consensus. Unlike ID, SLD is weakly related to full-scale IQ, and there is insufficient evidence that the routine assessment of IQ or cognitive skills adds value to SLD identification and treatment. We have proposed a hybrid method based on the assessment of low achievement with norm-referenced tests, instructional response, and other disorders and contextual factors that may be comorbid or contraindicative of SLD. In contrast to SLD, there is strong consensus for a three-prong definition for the identification and assessment of ID: (a) significantly subaverage IQ, (b) adaptive behavior deficits that interfere with independent living in the community, and (c) age of onset in the developmental period. For both SLD and ID, we identify areas of controversy and best practices for identification and assessment.

A Register Study Suggesting Homotypic and Heterotypic Comorbidity Among Individuals With Learning Disabilities.

The present study examined whether learning disabilities (LD) in reading and/or math (i.e., reading disability [RD], math disability [MD], and RD+MD) co-occur with other diagnoses. The data comprised a clinical sample (n = 430) with LD identified in childhood and a sample of matched controls (n = 2,140). Their medical diagnoses (according to the International Classification of Diseases nosology) until adulthood (20-39 years) were analyzed. The co-occurrence of LD with neurodevelopmental disorders was considered a homotypic comorbidity, and co-occurrence with disorders or diseases from the other diagnostic categories (i.e., mental and behavioral disorders, diseases of the nervous system, injuries, other medical or physical diagnoses) was considered a heterotypic comorbidity. Both homotypic and heterotypic comorbidity were more common in the LD group. Co-occurring neurodevelopmental disorders were the most prominent comorbid disorders, but mental and behavioral disorders, diseases of the nervous system, and injuries were also pronounced in the LD group. Accumulation of diagnoses across the diagnostic categories was more common in the LD group. No differences were found among the RD, MD, and RD+MD subgroups. The findings are relevant from the theoretical perspective, as well as for clinical and educational practice, as they provide understanding regarding individual distress and guiding for the planning of support.