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Journal of Applied Research in... Jul 2023Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting... (Review)
Review
A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co-researchers involved and what are their experiences?
BACKGROUND
Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised.
METHOD
Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised.
RESULTS
Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed-methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible.
CONCLUSIONS
Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.
Topics: Humans; Intellectual Disability; Community-Based Participatory Research; Social Support; Research Design; Research Personnel
PubMed: 37002721
DOI: 10.1111/jar.13100 -
Journal of Applied Research in... Mar 2023Dementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number... (Review)
Review
BACKGROUND
Dementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia.
METHOD
This systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, PsychInfo and Social Services Abstracts.
RESULTS
Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments.
CONCLUSION
The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.
Topics: Humans; Intellectual Disability; Qualitative Research; Social Work; Dementia
PubMed: 36562340
DOI: 10.1111/jar.13063 -
International Journal of Molecular... Oct 2022The CTNNB1 Syndrome is a rare neurodevelopmental disorder associated with developmental delay, intellectual disability, and delayed or absent speech. The aim of the... (Review)
Review
The CTNNB1 Syndrome is a rare neurodevelopmental disorder associated with developmental delay, intellectual disability, and delayed or absent speech. The aim of the present study is to systematically review the available data on the prevalence of clinical manifestations and to evaluate the correlation between phenotype and genotype in published cases of patients with CTNNB1 Syndrome. Studies were identified by systematic searches of four major databases. Information was collected on patients' genetic mutations, prenatal and neonatal problems, head circumference, muscle tone, EEG and MRI results, dysmorphic features, eye abnormalities, early development, language and comprehension, behavioral characteristics, and additional clinical problems. In addition, the mutations were classified into five groups according to the severity of symptoms. The study showed wide genotypic and phenotypic variability in patients with CTNNB1 Syndrome. The most common moderate-severe phenotype manifested in facial dysmorphisms, microcephaly, various motor disabilities, language and cognitive impairments, and behavioral abnormalities (e.g., autistic-like or aggressive behavior). Nonsense and missense mutations occurring in exons 14 and 15 were classified in the normal clinical outcome category/group because they had presented an otherwise normal phenotype, except for eye abnormalities. A milder phenotype was also observed with missense and nonsense mutations in exon 13. The autosomal dominant CTNNB1 Syndrome encompasses a wide spectrum of clinical features, ranging from normal to severe. While mutations cannot be more generally categorized by location, it is generally observed that the C-terminal protein region (exons 13, 14, 15) correlates with a milder phenotype.
Topics: Pregnancy; Female; Humans; Codon, Nonsense; Phenotype; Intellectual Disability; Syndrome; Genotype; Mutation; Eye Abnormalities; beta Catenin
PubMed: 36293418
DOI: 10.3390/ijms232012564 -
Journal of Applied Research in... Nov 2017Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to... (Review)
Review
BACKGROUND
Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care.
METHOD
This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide.
RESULTS
As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions.
CONCLUSION
A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Topics: Child; Humans; Intellectual Disability; Palliative Care; Pediatrics; Quality of Life
PubMed: 28836319
DOI: 10.1111/jar.12389 -
Behavioral and Brain Functions : BBF May 2022Genetic variants of DCX, COMT and FMR1 have been linked to neurodevelopmental disorders related to intellectual disability and social behavior. In this systematic review... (Review)
Review
Genetic variants of DCX, COMT and FMR1 have been linked to neurodevelopmental disorders related to intellectual disability and social behavior. In this systematic review we examine the roles of the DCX, COMT and FMR1 genes in the context of hippocampal neurogenesis with respect to these disorders with the aim of identifying important hubs and signaling pathways that may bridge these conditions. Taken together our findings indicate that factors connecting DCX, COMT, and FMR1 in intellectual disability and social behavior may converge at Wnt signaling, neuron migration, and axon and dendrite morphogenesis. Data derived from genomic research has identified a multitude of genes that are linked to brain disorders and developmental differences. Information about where and how these genes function and cooperate is lagging behind. The approach used here may help to shed light on the biological underpinnings in which key genes interface and may prove useful for the testing of specific hypotheses.
Topics: Catechol O-Methyltransferase; Cognitive Dysfunction; Fragile X Mental Retardation Protein; Hippocampus; Humans; Intellectual Disability; Neurogenesis; Social Behavior
PubMed: 35590332
DOI: 10.1186/s12993-022-00191-7 -
Behavior Modification Jan 2014The concept of motivational operations exerts an increasing influence on the understanding and assessment of problem behavior in people with intellectual and... (Review)
Review
The concept of motivational operations exerts an increasing influence on the understanding and assessment of problem behavior in people with intellectual and developmental disability. In this systematic review of 59 methodologically robust studies of the influence of motivational operations in negative reinforcement paradigms in this population, we identify themes related to situational and biological variables that have implications for assessment, intervention, and further research. There is now good evidence that motivational operations of differing origins influence negatively reinforced problem behavior, and that these might be subject to manipulation to facilitate favorable outcomes. There is also good evidence that some biological variables warrant consideration in assessment procedures as they predispose the person's behavior to be influenced by specific motivational operations. The implications for assessment and intervention are made explicit with reference to variables that are open to manipulation or that require further research and conceptualization within causal models.
Topics: Aggression; Developmental Disabilities; Humans; Intellectual Disability; Motivation; Reinforcement, Psychology; Self-Injurious Behavior
PubMed: 24285781
DOI: 10.1177/0145445513509649 -
Research in Developmental Disabilities Nov 2013The aim of this study was to evaluate the efficacy of psychological therapies for people with intellectual disabilities (IDs) through a systematic review and... (Meta-Analysis)
Meta-Analysis Review
The aim of this study was to evaluate the efficacy of psychological therapies for people with intellectual disabilities (IDs) through a systematic review and meta-analysis of the current literature. A comprehensive literature search identified 143 intervention studies. Twenty-two trials were eligible for review, and 14 of these were subsequently included in the meta-analysis. Many studies did not include adequate information about their participants, especially the nature of their IDs; information about masked assessment, and therapy fidelity was also lacking. The meta-analysis yielded an overall moderate between-group effect size, g=.682, while group-based interventions had a moderate but smaller treatment effect than individual-based interventions. Cognitive-behaviour therapy (CBT) was efficacious for both anger and depression, while interventions aimed at improving interpersonal functioning were not effectual. When CBT was excluded, there was insufficient evidence regarding the efficacy of other psychological therapies, or psychological therapies intended to treat mental health problems in children and young people with IDs. Adults with IDs and concurrent mental health problems appear to benefit from psychological therapies. However, clinical trials need to make use of improved reporting standards and larger samples.
Topics: Anger; Cognitive Behavioral Therapy; Depressive Disorder; Humans; Intellectual Disability; Mental Disorders; Psychotherapy; Treatment Outcome
PubMed: 24051363
DOI: 10.1016/j.ridd.2013.08.030 -
Epilepsy & Behavior : E&B Jul 2016Epilepsy is a neurological condition that is particularly common in people with intellectual disability (ID). The care for people with both epilepsy and ID is often... (Review)
Review
Epilepsy is a neurological condition that is particularly common in people with intellectual disability (ID). The care for people with both epilepsy and ID is often complicated by the presence of neuropsychiatric disorders, defined as psychiatric symptoms, psychiatric disorders, and behavioral problems. The aim of this study was to investigate associations between epilepsy or epilepsy-related factors and neuropsychiatric comorbidities in patients with ID and between ID and neuropsychiatric comorbidities in patients with epilepsy. We performed a systematic review of the literature, published between January 1995 and January 2015 and retrieved from PubMed/Medline, PsycINFO, and ERIC and assessed the risk of bias using the SIGN-50 methodology. Forty-two studies were identified, fifteen of which were assessed as having a low or acceptable risk-of-bias evaluation. Neuropsychiatric comorbidities were examined in relation to epilepsy in nine studies; in relation to epilepsy-related factors, such as seizure activity, seizure type, and medication in four studies; and in relation to the presence and degree of ID in five studies. We conclude that the presence of epilepsy only was not a clear determinant of neuropsychiatric comorbidity in patients with ID, although a tendency towards negative mood symptoms was identified. Epilepsy-related factors indicating a more severe form of epilepsy were associated with neuropsychiatric comorbidity as was the presence of ID as compared to those without ID in patients with epilepsy, although this should be validated in future research. A large proportion of the studies in this area is associated with a substantial risk of bias. There is a need for high quality studies using standardized methods to enable clear conclusions to be drawn that might assist in improving the quality of care for this population.
Topics: Adult; Comorbidity; Epilepsy; Female; Humans; Intellectual Disability; Male; Qualitative Research; Seizures
PubMed: 27206231
DOI: 10.1016/j.yebeh.2016.04.018 -
Journal of Applied Research in... Mar 2021People with intellectual disabilities can experience homelessness, and some of the reasons differ from the general homeless population. Specific policy and practice... (Review)
Review
BACKGROUND
People with intellectual disabilities can experience homelessness, and some of the reasons differ from the general homeless population. Specific policy and practice responses are required.
METHOD
A systematic review of studies examining homelessness among people with intellectual disabilities utilizing CINAHL, MEDLINE, PsycINFO and Sociological Abstracts databases from inception to November 2019.
RESULTS
The search produced 259 papers, and following screening, a total of 13 papers were included in the review. The themes identified were (i) pathways into homelessness, (ii) experiencing homelessness and (iii) routes out of homelessness.
CONCLUSIONS
People with ID become homeless due to multifactorial issues. The identification of people within homeless services and their care and support concerns remains challenging, impacting upon the provision of assessments, interventions, care and supports. Psychosocial assessments, interventions and supports are necessary to assist people with ID to leave homelessness.
Topics: Ill-Housed Persons; Humans; Intellectual Disability
PubMed: 32959955
DOI: 10.1111/jar.12815 -
Journal of Intellectual Disability... Jan 2024Sleep problems are regularly reported in people with intellectual disabilities. Recent years have seen a substantial increase in studies comparing sleep in people with... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Sleep problems are regularly reported in people with intellectual disabilities. Recent years have seen a substantial increase in studies comparing sleep in people with intellectual disabilities to control participants, with an increase in the use of validated, objective measures. Emerging patterns of differences in sleep time and sleep quality warrant pooled investigation.
METHODS
A systematic search was conducted across three databases (Ovid Embase, PsycInfo and Medline) and returned all papers comparing sleep in people with intellectual disabilities to a control group, published since the last meta-analysis on the topic. A quality framework was employed to rate the risk of bias across studies. Separate meta-analyses of sleep duration and sleep quality were conducted. Subgrouping compared findings for those studies with participants with genetic syndromes or neurodevelopmental conditions and those with heterogeneous intellectual disability.
RESULTS
Thirteen new papers were identified and combined with those from the previous meta-analysis to provide 34 papers in total. Quality of studies was generally rated highly, though sampling provided risk of bias and adaptive functioning was rarely measured. People with intellectual disability associated with genetic syndromes or neurodevelopmental conditions sleep for shorter time periods (standardised mean difference = .26) and experience worse sleep quality (standardised mean difference = .68) than their peers. People with intellectual disability of heterogeneous origin show no difference in sleep time but have poorer sleep quality. There was some evidence that age moderated these effects.
CONCLUSIONS
People with intellectual disability have poorer sleep than those without. Subtle patterns suggest that aetiology of intellectual disability moderates the topography of these difficulties, with further work needed to differentiate common and distinct mechanisms across groups.
Topics: Humans; Intellectual Disability; Sleep; Neurodevelopmental Disorders
PubMed: 37857569
DOI: 10.1111/jir.13093