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1 – 10 of 255Karen Bunning, Joseph Karisa Gona, Charles Richard Newton and Sally Hartley
Raising a child with learning and developmental disabilities in a low-income setting is challenged by inadequate resources, limited support and poverty. The impacts on caregivers…
Abstract
Purpose
Raising a child with learning and developmental disabilities in a low-income setting is challenged by inadequate resources, limited support and poverty. The impacts on caregivers include fatigue, distress and isolation. The purpose of this paper is to report on a programme (2008-2021) that was set up in Kilifi County, Kenya to investigate and address these difficulties.
Methodology
The programme used mixed methods through a series of interconnected studies, starting with a situation analysis, followed by a home-based intervention where the caregiver served as agent for change using augmentative and alternative communication (AAC) methods. This was followed by two community-based inclusive development initiatives: disability awareness training to community groups and empowering self-help groups for caregivers of children growing up with disabilities.
Findings
The situation analysis revealed scarce support services for caregivers and children with learning and developmental disabilities, with report of limited resources, inadequate coverage and poor professional practice. A home-based, AAC intervention was associated with improved caregiver well-being, significant positive changes to caregiver perceptions of the child’s communication and some expansion to the child’ social activities. However, questions around sustainability persisted. Disability awareness training led by persons with lived experience of disability showed positive changes to the views, values and attitudes of established community groups. Caregiver participation in self-help groups was associated with their greater personal agency, perceptions of increased social support and reduced severity of child’s disability.
Originality
The programme narrative demonstrates a rationalised and evidence-based process for community-based inclusive development that is low cost, culturally acceptable, with potential for sustainability.
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Lucia Parisi, Teresa Di Filippo and Michele Roccella
Cornelia de Lange syndrome (CdLS) is a congenital disorder characterized by distinctive facial features, growth retardation, limb abnormalities, intellectual disability, and…
Abstract
Cornelia de Lange syndrome (CdLS) is a congenital disorder characterized by distinctive facial features, growth retardation, limb abnormalities, intellectual disability, and behavioral problems. Cornelia de Lange syndrome is associated with abnormalities on chromosomes 5, 10 and X. Heterozygous point mutations in three genes (NIPBL, SMC3 and SMC1A), are responsible for approximately 50-60% of CdLS cases. CdLS is characterized by autistic features, notably excessive repetitive behaviors and expressive language deficits. The prevalence of autism spectrum disorder (ASD) symptomatology is comparatively high in CdLS. However, the profile and developmental trajectories of these ASD characteristics are potentially different to those observed in individuals with idiopathic ASD. A significantly higher prevalence of self-injury are evident in CdLS. Self-injury was associated with repetitive and impulsive behavior. This study describes the behavioral phenotype of four children with Cornelia de Lange syndrome and ASDs and rehabilitative intervention that must be implemented.
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Vincent Peters, Mervi Vähätalo, Bert Meijboom, Alice Barendregt, Levinus Bok and Esther de Vries
This study examines how modular interfaces manifest in multi-provider contexts and how they can improve coordination and customization of services. The aim of the study is to…
Abstract
Purpose
This study examines how modular interfaces manifest in multi-provider contexts and how they can improve coordination and customization of services. The aim of the study is to describe interfaces in multi-provider contexts and elaborate on how they support the delivery of integrated patient care.
Design/methodology/approach
A qualitative, multiple case study was conducted in two multi-provider contexts in healthcare services: one representing paediatric Down syndrome care in the Netherlands and one representing home care for the elderly in Finland. Data collection involved semi-structured interviews in both contexts.
Findings
This study provides insight into several types of interfaces and their role in multi-provider contexts. Several inter- and intra-organizational situations were identified in which the delivery of integrated patient care was jeopardized. This study describes how interfaces can help to alleviate these situations.
Originality/value
This study deepens the understanding of interfaces in service modularity by describing interfaces in multi-provider contexts. The multi-provider contexts studied inspired to incorporate the inter-organizational aspect into the literature on interfaces in service modularity. This study further develops the typology for interfaces in modular services by adding a third dimension to the typology, that is, the orientation of interfaces.
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Miquel Àngel Pellicena, Ignasi Ivern, Climent Giné and Olga Múries
This study aims to contribute to a better understanding of organizational strategies, attitudes and supports that can help people with intellectual disabilities to access…
Abstract
Purpose
This study aims to contribute to a better understanding of organizational strategies, attitudes and supports that can help people with intellectual disabilities to access competitive jobs through supported employment.
Design/methodology/approach
A multiple case study was carried out based on an intentional sampling involving the coworker mentors of six people with intellectual disabilities currently working in standardized environments. Semi-structured interviews were performed with the participants, and an inductive thematic analysis was used for data analysis.
Findings
The study identified five critical factors in the work of people with intellectual disabilities in standardized work environments, which potentially could act as facilitators or as obstacles, depending on how they were managed. The study also identified two key factors that acted mainly as facilitators and one as an obstacle.
Originality/value
The study reveals the existence of factors that sometimes act as facilitators and sometimes as obstacles, depending on how they are managed by the company leaders or the disabled worker himself.
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Akm Ahsan Ullah and Faraha Nawaz
There is abundant research on surrogacy; however, migration scholars have not addressed surrogacy-driven migration. Policies related to surrogacy and surrogacy-led migration are…
Abstract
Purpose
There is abundant research on surrogacy; however, migration scholars have not addressed surrogacy-driven migration. Policies related to surrogacy and surrogacy-led migration are under-researched. The paper argues that surrogacy-led migration or fertility/reproductive migration constitutes a significant part of mainstream migration. The purpose of this paper is to reflect on the policy dilemmas in various countries.
Design/methodology/approach
A total of 9 surrogate mothers (4 from India; 2 from Thailand, 2 from Indonesia and 1 from Nepal) and 8 commissioning parents (2 from Japan; 4 from Europe; 1 from the USA; 1 from Australia) and 2 doctors (1 from India and 1 from Thailand) selected on snowball basis were interviewed between 2014 and 2016 by using a checklist.
Findings
The deficiency and inconsistency of laws regarding surrogacy facilitated the growth of the surrogacy market. Therefore, a uniform policy would help to define and improve the surrogacy and surrogacy-led migration management.
Originality/value
This paper demonstrates the interplay of surrogacy and mainstream migration. This is a fresh addition to the study of migration.
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Medea Zirakashvili, Maia Gabunia, Nana Mebonia, Tamar Mikiashvili, Giorgi Lomidze, Somer Bishop, Bennett Leventhal and Young Shin Kim
Even though 95% of children with neurodevelopmental disorders, including autism spectrum disorder (ASD), live in low- and middle-income countries, there is a dearth of studies…
Abstract
Purpose
Even though 95% of children with neurodevelopmental disorders, including autism spectrum disorder (ASD), live in low- and middle-income countries, there is a dearth of studies from these countries, including the Republic of Georgia. Several ASD screening tools are available, but few are validated for use in Georgian or other smaller countries. This study aims to adapt and validate the autism spectrum screening questionnaire (ASSQ) for use in Georgia.
Design/methodology/approach
The ASSQ was administered for all third-grade students in 402 schools in the five main Georgian cities, n = 27,336. Prior to use, the 27-item ASSQ was translated, back-translated and adapted for use in Georgia. A total of 16,556 students (approximately 61%) were assessed by a parent and/or teacher. Optimal cutoff scores were estimated. Randomly chosen children who screened positive (n = 173) and negative (n = 127) were offered comprehensive assessment using standardized diagnostic procedures.
Findings
Data from 15,510 parents- and 13,517 teachers-administered ASSQ revealed statistically significant differences in median and cutoff scores between parents and teachers: 7 versus 4 and 9 versus 6, respectively. Cutoff score = 14, on either parent or teacher ASSQ, had sensitivity of 0.94, indicating that it can be used in school settings.
Originality/value
The Georgian adaptation of the ASSQ creates opportunity for further ASD research, while also providing a valid screening tool for clinicians. Data from Georgia will add to the growing understanding of the broader ASD phenotype.
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Jacopo Santambrogio, Michela Russo, Sergio Terrevazzi, Gianluca Peschi, Massimo Clerici and Marco O. Bertelli
Persons with intellectual disability and/or low-functioning autism spectrum didorder are with high support need (ID/ASD-HSN) are among the people who are most vulnerable to the…
Abstract
Purpose
Persons with intellectual disability and/or low-functioning autism spectrum didorder are with high support need (ID/ASD-HSN) are among the people who are most vulnerable to the COVID-19 pandemic. The specific vulnerability and the protective factors for persons with ID/LF-ASD attending residential and rehabilitative facilities have however received little attention. This paper aims to describe how two facilities located in the Italian COVID-19 red zone faced the risks associated with the spread of the pandemic and the results they have achieved so far.
Design/methodology/approach
Interventions to contrast the spread of the pandemic and preserve clients’ health conditions have been systematically monitored and recorded since the very beginning of the pandemic.
Findings
26/138 clients had to undergo clinical screening and laboratory tests for COVID-like symptomatology, but only one resulted affected by COVID-19 and survived. Considering that Lombardy had 89,595 cases and 16,262 deaths (January–May 2020), one COVID-19 case/138 clients is a good result. Temporarily limiting physical contacts with friends/family in favor of reducing the burden of risk and adopting a system of prevention/safety strategies directed for persons with ID/LF-ASD attending and their caregivers have been useful measures.
Research limitations/implications
Structured or semi-structured interviews (using professional caregivers as informant) to confirm behavioral and emotional changes in the clients could not be carried out because of lack of time and resources (which were captured by the management of the pandemic) and could be the next goal for our residential facilities to implement the management of epidemic acute phases in a research-oriented view.
Originality/value
This study is a service evaluation report about facing COVID-19 pandemic. Only few such studies are present in medical literature about ID/ASD.
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David J. Harper, Darren Ellis and Ian Tucker
This chapter focusses on the ethical issues raised by different types of surveillance and the varied ways in which surveillance can be covert. Three case studies are presented…
Abstract
This chapter focusses on the ethical issues raised by different types of surveillance and the varied ways in which surveillance can be covert. Three case studies are presented which highlight different types of surveillance and different ethical concerns. The first case concerns the use of undercover police to infiltrate political activist groups over a 40-year period in the UK. The second case study examines a joint operation by US and Australian law enforcement agencies: the FBI’s operation Trojan Shield and the AFP’s Operation Ironside. This involved distributing encrypted phone handsets to serious criminal organisations which included a ‘backdoor’ secretly sending encrypted copies of all messages to law enforcement. The third case study analyses the use of emotional artificial intelligence systems in educational digital learning platforms for children where technology companies collect, store and use intrusive personal data in an opaque manner. The authors discuss similarities and differences in the ethical questions raised by these cases, for example, the involvement of the state versus private corporations, the kinds of information gathered and how it is used.
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