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Journal article

The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities

Authors:
HALL Sarah A., ROSSETTI Zach
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 31(3), 2018, pp.423-434.
Publisher:
Wiley

Background: Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. Method: Seventy‐nine adult siblings from 19 to 72 years of age completed an online survey with open‐ended questions about the roles they play in their relationships with their brother or sister. Results: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. Conclusion: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles. (Edited publisher abstract)

Journal article

"Tell me what they do to my body": a survey to find out what information people with learning disabilities want with their medications

Authors:
FISH Rebecca, HATTON Chris, CHAUHAN Umesh
Journal article citation:
British Journal of Learning Disabilities, 45(3), 2017, pp.217-225.
Publisher:
Wiley

Background: Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. This study aimed to find out people’s information requirements. Materials and Methods: A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire. Results: Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. Conclusions: Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format. (Edited publisher abstract)

Journal article

Recognising and responding to young people with learning disabilities who experience, or are at risk of, child sexual exploitation in the UK

Authors:
FRANKLIN Anita, SMEATON Emilie
Journal article citation:
Children and Youth Services Review, 73, 2017, pp.474-481.
Publisher:
Elsevier

In the UK, child sexual exploitation (CSE) has received considerable attention in the last few years, with evidence pointing to an increased risk for young people with learning disabilities. However, no study has specifically focused on this and little is known about how best to protect, identify or support this group. This paper is based on a UK study which examined the identification of, and support for sexual exploited young people with learning disabilities. Data collection included surveys of all local authorities in the UK and of a sample of services supporting vulnerable or disabled children, in-depth interviews with 34 professional stakeholders and with 27 young people with learning disabilities who were at risk of, or who had experienced CSE. This paper provides an overview of the study and identifies areas for improvement in policy and practice including the need for education, training and awareness raising amongst young people, their families and professionals; tackling social isolation, disempowerment and invisibility of young people with learning disabilities, and the need for full implementation of government guidance with a spotlight on this group of young people. (Publisher abstract)

Journal article Full text available online for free

Perceptions of the risks and benefits of Internet access and use by people with intellectual disabilities

Authors:
CHADWICK Darren D., FULLWOOD Chris, QUINN Sally
Journal article citation:
British Journal of Learning Disabilities, 45(1), 2017, pp.21-31.
Publisher:
Wiley

Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to the same degree as people without intellectual disabilities. Issues of safety, risk and protection online for people with intellectual disabilities have yet to be adequately investigated, and these currently serve as reasons given for hindering people from gaining online access. Materials and Method: This survey aimed to gauge the views people without intellectual disabilities have of risks and benefits of using the Internet for themselves and for people with intellectual disabilities and to compare self-ratings of risk and benefits to ratings for people with intellectual disabilities. Results: The survey findings indicate that, with only a small number of exceptions, both the risks and benefits of being online were believed to be greater for people with intellectual disabilities compared with those without intellectual disabilities. Greater use of the Internet was associated with increased perception of benefits to being online for both people with intellectual disabilities and for participants. Conclusions: Perceptions of increased benefits suggest more needs to be performed to improve online access whilst a perception of increased risk may help to explain the reduced inclusion of people with intellectual disabilities in the online world. (Publisher abstract)

Journal article

A survey of consultant psychiatrists in intellectual disability based in England

Authors:
GUINN Ashley, et al
Journal article citation:
Advances in Mental Health and Intellectual Disabilities, 10(4), 2016, pp.258-270.
Publisher:
Emerald

Purpose: Community mental health services are of increasing importance for people with an intellectual disability (ID), as the government aims to reduce the number of people treated within inpatient services. However, due to limited evidence base, it is unclear which service models are most effective for treating people with both ID and a mental health condition. Therefore, the purpose of this paper is to carry out a survey in order to gain a better understanding of the current state of ID community services. Design/methodology/approach The survey was e-mailed to 310 consultant psychiatrists based in England and whose main specialism was in ID. In total, 65 consultants responded to the survey with 53 complete data sets. Findings: In total, 84 per cent of consultants identified themselves as working in a generic community ID team. The majority of services were not integrated with social care (71 per cent). Regional differences were found. In contrast to the rest of England, the majority of services in London were integrated with social care. The Health of the Nation Outcome Scale for people with Learning Disabilities (HoNOS-LD) was found to be the most common outcome measure used by services. A range of interventions are widely available across services including psychological therapies and specialist memory assessments. The survey also provides evidence for increased decommissioning of specialist inpatient units and a need for more robust community services. Research limitations/implications: Findings limited by low return rate (21 per cent) and because responses could not be matched to specific services. The implications of this survey are that there is still a variable level of integration with social care and that lack of integration could affect the quality of service. While HoNOS-LD is used consistently across services, there may be a need to supplement it with other outcome measures. There is a need for larger scale and higher quality studies in this area to strengthen the evidence base and therefore demonstrate the benefits of integration and specialisation more convincingly to health professionals and commissioners. Originality/value: This survey presents an overview of the current state of community services for adults with ID in England. This information can be harnessed to add to revised approaches to mental health service models for people with ID. (Publisher abstract)

Journal article

Access to services by children with intellectual disability and mental health problems: population-based evidence from the UK

Authors:
TOMS Gill, et al
Journal article citation:
Journal of Intellectual and Developmental Disability, 40(3), 2015, pp.239-247.
Publisher:
Taylor and Francis

Background: Children with intellectual disability (ID) experience high levels of mental health problems that may require access to professional support. However, there is limited information about how frequently these children access services. Method: A survey of mental health in children living in the United Kingdom (UK) by the Office of National Statistics in 2004 (N = 7,977) was used to examine levels of service access. Children with ID and mental health problems were compared to children with mental health problems (without ID), children with ID and no mental health problems, and typically developing children. Results: Children with ID and mental health problems accessed specialist mental health services at higher rates than children with only ID, but at similar rates to children who only have mental health problems. Conclusions: Overall, low levels of service access highlight likely high unmet need among children with ID, mental health problems, and both conditions. (Publisher abstract)

Journal article

IAPT practitioners’ experiences of providing therapy to people with intellectual disabilities

Authors:
SHANKLAND Jennifer, DAGNAN Dave
Journal article citation:
Advances in Mental Health and Intellectual Disabilities, 9(4), 2015, pp.206-214.
Publisher:
Emerald

Purpose:The purpose of this paper is to describe the views and experiences of Improving Access to Psychological Therapies (IAPT) practitioners in providing therapy to patients who have an intellectual disability in order to support IAPT services in increasing their capability in this area. Design/methodology/approach: An online survey was conducted of IAPT practitioners in four IAPT services in the north of England. The survey collected respondents demographic information and their experience, confidence and attitudes to working with people with intellectual disabilities. Qualitative responses regarding respondents attitudes, views of barriers, problems, successes and possible solutions to the delivery of therapy to people with intellectual disabilities within IAPT services were collected. The survey results were interpreted by thematic and statistical analysis. Findings: The majority of respondents report having worked with people with intellectual disabilities and identify the need to adapt therapy, but also believe that such therapy should be offered within mainstream services. Thematic analysis identifies the needs for support in training, therapy adaptation and adjustment to pathways. However, the majority of respondents could identify positive outcomes and experiences. Research limitations/implications: This data supports the further development of pathways and offers some broad frameworks for the focus of training and development work for people with intellectual disabilities within IAPT. Social implications: This project has identified a positive attitude and willingness to consider adaptation of therapy for people with intellectual disabilities in practitioners working within IAPT services. Originality/value: Until now the views and experiences of IAPT practitioners in working with this patient group were relatively unknown. (Publisher abstract)

Journal article

Characteristics of the most expensive residential placements for adults with learning disabilities in South East England: a follow-up survey

Authors:
DEVEAU Roy, McGILL Peter, POYNTER Jo
Journal article citation:
Tizard Learning Disability Review, 20(2), 2015, pp.97-102.
Publisher:
Emerald

Purpose: The purpose of this paper is to investigate the characteristics of the highest cost residential placements provided for adults with learning disabilities in the South East of England, comparing findings with a previous survey. Design/methodology/approach: Lead commissioners for NHS and Local Authority teams in the South-East of England were asked to provide information on the five highest cost placements that they currently commissioned. Findings: The average placement cost was £200,000 per annum with a range from £81,000 to £430,000 per annum. Individual characteristics of people placed were broadly similar to those identified in previous studies. The paper also reports on differences between in and out-of-area-placements and factors associated with higher costs. Originality/value: Significant resources are used to support relatively few individuals. These individuals’ needs and characteristics suggest areas for research and practice development. (Edited publisher abstract)

Book Full text available online for free

Special educational needs and disability pathfinder programme evaluation: summary of interim impact findings: research report

Authors:
CRASTON Meera, et al
Publisher:
Great Britain. Department for Education
Publication year:
2014
Pagination:
8
Place of publication:
London

This summary presents the interim findings from the ongoing impact evaluation of the SEND pathfinder programme, through which pathfinder families and a matched group of comparator families are being asked to provide their views on the support they have received. The report reflects the views of 328 pathfinder families who completed their education, health and care (EHC) plans between August 2013 and January 2014, and 1,000 comparison families that experienced the pre-pathfinder systems. The results from the interim analysis provide a range of positive findings, highlighting improvement around a good number of the process variables which are central to the reforms, such as being child / family centred and generating increased satisfaction with the overall process. More specifically, the pathfinder families reported statistically significant improvement in relation to: their views being taken into consideration in assessment and reviews; their suggestions being listened to during the process; the decisions made about their child's support reflecting the family's views; the straightforwardness of the process to obtain support; the effectiveness of information-sharing among professionals involved in their child's assessment; having at least one key worker working with their family; the length of the assessment and planning process; and overall satisfaction with the assessment and planning processes. (Edited publisher abstract)

Journal article

Identifying the key concerns of Irish persons with intellectual disability

Authors:
IRIARTE Edurne Garcia, et al
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(6), 2014, pp.564-575.
Publisher:
Wiley

Aims: This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. Methods: A national study involving 23 focus groups and 168 persons was conducted in Ireland with people with intellectual disability as co-facilitators. Findings: A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. Discussion: The concerns are discussed within the framework of the United Nations Convention for the Rights of Persons with Disabilities, and implications for transforming service policy are drawn. (Edited publisher abstract)

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