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1 – 10 of 79Lucy Barnard-Brak, Kagendo Mutua and Joy Burnham
This paper aims to examine for differences in potentially productive fear versus all other fear scores comparing adolescents and young adults with intellectual disabilities versus…
Abstract
Purpose
This paper aims to examine for differences in potentially productive fear versus all other fear scores comparing adolescents and young adults with intellectual disabilities versus their typically developing peers without intellectual disabilities while statistically controlling for chronological age.
Design/methodology/approach
The authors examined for differences in potentially productive fear scores versus all fear scores comparing adolescents and young adults with intellectual disabilities versus their typically developing peers without intellectual disabilities.
Findings
Results of the current study highlight the importance of examining and statistically acknowledging the form of the relationship between age and fear. As previous research has indicated the relationship of age with fear, this form of the relationship should be acknowledged in subsequent analyses. Results also present a conceptualization of fear with some fears being considered as potentially productive fears as it relates to independent living.
Research limitations/implications
As previous research has indicated the relationship of age with fear, this form of the relationship should be acknowledged in subsequent analyses. Finally, results present a conceptualization of fear with some fears being considered as potentially productive fears as it relates to independent living as an outcome.
Practical implications
The current study presents a conceptualization of fear with some fears being considered as potentially productive fears as it relates to independent living as an outcome.
Originality/value
Results support that potentially productive fears can be considered fears that can be used to promote learning that leads to independent living outcomes such as safety and security.
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Daniel James Acton, Sujeet Jaydeokar and Steven Jones
Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related…
Abstract
Purpose
Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.
Design/methodology/approach
A systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.
Findings
A search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.
Originality/value
This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.
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Emily Bouck, Larissa Jakubow and Sarah Reiley
This chapter sought to answer the following questions: (a) what does special education means for students with intellectual disability?, (b) what is being done, and (c) how do we…
Abstract
This chapter sought to answer the following questions: (a) what does special education means for students with intellectual disability?, (b) what is being done, and (c) how do we maintain tradition? The answers, while complicated, suggest special education for students with intellectual disability historically and currently involves attention to what, how, and where, with the how being the key elements of special education for students with intellectual disability. This chapter discussed the what, how, and where for students with intellectual disability in a historical and current framework while also providing evidence-based practices for students with intellectual disability to implement to maintain the tradition of high-quality services.
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Caroline Duncan, Ewan Wilkinson, Sujeet Jaydeokar and Daniel James Acton
This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National…
Abstract
Purpose
This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.
Design/methodology/approach
The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.
Findings
The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.
Originality/value
To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.
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Danielle Adams, Richard P. Hastings, Ian Maidment, Chetan Shah and Peter E. Langdon
Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to…
Abstract
Purpose
Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process.
Design/methodology/approach
In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders’ experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study.
Findings
Six studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders.
Originality/value
There have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed.
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Aideen Sheehan and Roger O'Sullivan
Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical…
Abstract
Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical challenges involved in encouraging participation from groups with a wide range of intellectual, cognitive and physical capacities while ensuring that the rights and well-being of participants are protected. Rather than exploring ethical theories, this chapter is a case study describing the practical ethical considerations that were involved in designing and holding a series of focus groups with adult health and social care service users from vulnerable cohorts. It is based on a series of focus groups which the Institute of Public Health (IPH) held with specified cohorts as part of a policy development process on adult safeguarding for the Department of Health (DOH) in Ireland. The four cohorts were people with intellectual disability, cognitive impairments, significant mental health challenges and nursing home residents. This chapter does not describe the findings of the focus groups but outlines the ethical and methodological considerations that arose in designing and conducting this research, and the practical ethical safeguards employed to mitigate risk and comply with Irish and EU General Data Protection Regulation (GDPR) legislation governing health research. It outlines the ethical issues around protecting confidentiality and using incentives to encourage participation, how individuals' capacity to give informed consent was maximized, the risk-assessment and mitigation procedures used to prevent harms arising and the measures put in place to provide follow-up emotional support to participants.
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Rachel Mills, Rajan Nathan, Paul Soper, Felix Michelet, Alex G. Stewart and Sujeet Jaydeokar
The purpose of the study was to examine whether there were differences in the provision of non-pharmacological interventions based on the level of intellectual disability and the…
Abstract
Purpose
The purpose of the study was to examine whether there were differences in the provision of non-pharmacological interventions based on the level of intellectual disability and the presence or absence of autism. Mental health conditions are often underdiagnosed in adults with intellectual disability and do not always receive psychological interventions as recommended by the National Institute for Health and Care Excellent guidelines. To realise the national UK programme’s aim of stopping the overuse of medications in people with intellectual disability, it is important that these individuals have access to appropriate non-pharmacological interventions. The authors examined the relationship between an individual’s level of intellectual disability and the presence or absence of autism with access to relevant non-pharmacological interventions from specialist community intellectual disability services.
Design/methodology/approach
A cross-sectional study of adults accessing four specialist intellectual disability services in North West England in 2019.
Findings
There was a high prevalence of mental health comorbidity, even higher for autistic adults. However, a relatively small percentage of the study population was receiving psychological interventions. The most frequent non-pharmacological intervention was a positive behaviour support plan, irrespective of comorbid mental illnesses.
Research limitations/implications
Not having access to psychological interventions for the treatment of mental illness could result in poor health outcomes and increasing health inequalities. The study highlights the need for developing psychological interventions, particularly for those with moderate to severe intellectual disability and for those with associated autism.
Originality/value
This large sample study examined the relationship between intellectual disability level and the presence of autism with accessing psychological interventions.
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Rishabh Rajan, Mukesh Jain and Sanjay Dhir
This study aims to identify the critical factors contributing to India-based non-governmental organizations (NGOs) capacity building and value creation for beneficiaries.
Abstract
Purpose
This study aims to identify the critical factors contributing to India-based non-governmental organizations (NGOs) capacity building and value creation for beneficiaries.
Design/methodology/approach
A total interpretive structural modeling technique has been used to develop a hierarchical model of critical factors and understand their direct and indirect interrelationships. The driving force and dependence force of these factors were determined by using cross-impact matrix multiplication applied to classification analysis.
Findings
This study identifies 12 critical factors influencing NGO capacity building in India’s intellectual disability sector across four dimensions. Internal organizational capabilities include infrastructure, staff qualifications, fundraising, vocational activities and technical resources. Second, coordination and stakeholder engagement highlight government and agency collaboration, dedicated board members and stakeholder involvement. Third, adaptability and responsiveness emphasize adjusting to external trends and seizing opportunities. Finally, impact and value creation emphasis on improving value for persons with disabilities (PWDs).
Practical implications
The findings of this study have practical implications for Indian NGOs working for PWDs. The study provides NGOs with a structural model for improving organizational capacity by identifying and categorizing critical factors into the strategic model.
Originality/value
There is a scarcity of literature on capacity building for disability-focused NGOs in India. This study seeks to identify critical factors and develop a hierarchical model of those factors to assist policymakers in India in building the capacity of NGOs.
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This literature review aims to ascertain the outcomes and perspectives of community-based compassion-focused therapy (CFT) for adults with intellectual disabilities.
Abstract
Purpose
This literature review aims to ascertain the outcomes and perspectives of community-based compassion-focused therapy (CFT) for adults with intellectual disabilities.
Design/methodology/approach
A comprehensive search of five databases was conducted systematically, with one additional study identified manually, yielding eight relevant studies. Methodological quality was appraised using two tools to account for heterogeneity in study designs.
Findings
Two studies conducted a CFT-derived task while six studies conducted full CFT interventions, of which two delivered group interventions. Qualitative findings were favourable towards CFT, though some quantitative outcomes were inconsistent across the literature and with qualitative results. It is concluded that CFT is perceived as valuable and appears to produce positive outcomes for adults with intellectual disabilities. However, larger, randomised control trials are required to establish CFT as an efficacious, evidence-based intervention.
Originality/value
This review provides insight into the outcomes and perspectives of CFT for individuals with an intellectual disability which has not been explicitly explored prior. Therefore, a holistic and specific examination of community-based CFT for individuals with intellectual disabilities is introduced to the literature.
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