Journal of Intellectual Disabilities and Offending Behaviour, 11(3), 2020, pp.159-169.
Publisher:
Emerald
Expert consensus is that people with an intellectual disability are over represented across the criminal justice setting (CJS). Primary research studies have been conducted in police stations and prisons, but little is known about the prevalence of this population in the court setting. The purpose of this paper is to conduct a literature review to find out more about the prevalence of defendants with an intellectual disability in court. Design/methodology/approach: A literature review was conducted using standard systematic review methodology (Julian et al., 2011) and the PRISMA reporting guidelines (Moher et al., 2009).Findings: Two papers met the inclusion criteria and were critically appraised. The papers reported prevalence findings ranging from 10%–20%.Research limitations/implications: Differences in study design, sampling, recruitment and diagnostic criteria affect the ability to make comparisons or synthesise findings.Practical implications: It is important that future primary and secondary research studies standardise operational terms to enable true comparison between studies, systematic reviews and evidence syntheses.Social implications: Defendants with an intellectual disability need to be identified to enable criminal justice professionals to make reasonable adjustments to proceedings and consider diversion and alternative disposal options. This will likely improve outcomes for this population and reduce recidivism.Originality/value: This literature review contributes to the growing evidence base about meeting the criminal justice needs of people with a learning disability and recognition of the increased prevalence across the CJS and specifically within the court setting.
(Edited publisher abstract)
Expert consensus is that people with an intellectual disability are over represented across the criminal justice setting (CJS). Primary research studies have been conducted in police stations and prisons, but little is known about the prevalence of this population in the court setting. The purpose of this paper is to conduct a literature review to find out more about the prevalence of defendants with an intellectual disability in court. Design/methodology/approach: A literature review was conducted using standard systematic review methodology (Julian et al., 2011) and the PRISMA reporting guidelines (Moher et al., 2009).Findings: Two papers met the inclusion criteria and were critically appraised. The papers reported prevalence findings ranging from 10%–20%.Research limitations/implications: Differences in study design, sampling, recruitment and diagnostic criteria affect the ability to make comparisons or synthesise findings.Practical implications: It is important that future primary and secondary research studies standardise operational terms to enable true comparison between studies, systematic reviews and evidence syntheses.Social implications: Defendants with an intellectual disability need to be identified to enable criminal justice professionals to make reasonable adjustments to proceedings and consider diversion and alternative disposal options. This will likely improve outcomes for this population and reduce recidivism.Originality/value: This literature review contributes to the growing evidence base about meeting the criminal justice needs of people with a learning disability and recognition of the increased prevalence across the CJS and specifically within the court setting.
(Edited publisher abstract)
Subject terms:
criminal justice, learning disabilities, literature reviews, law courts;
Journal of Intellectual Disabilities, 24(2), 2020, p.233–252.
Publisher:
Sage
Place of publication:
London
The effectiveness of a range of psychological models adapted for use with people with intellectual disabilities has been well documented. A number of studies have used qualitative methods to examine people with intellectual disabilities’ experiences of these adapted interventions. Such research is important for identifying service users’ views on the helpful and challenging aspects of psychological interventions to ensure that they meet the needs of people with intellectual disabilities. To consolidate this research, a systematic review using a meta-ethnographic approach was undertaken. A systematic search identified 16 relevant studies. These studies were reviewed, critically appraised and key themes were extracted. Five key concepts were identified: adapting to therapy, the therapeutic environment, group dynamics, the therapeutic relationship and the impact of therapy on life. The need for further consideration of power differentials within the therapeutic relationship and further adaptations to ensure accessibility of therapy for people with intellectual disabilities is discussed.
(Publisher abstract)
The effectiveness of a range of psychological models adapted for use with people with intellectual disabilities has been well documented. A number of studies have used qualitative methods to examine people with intellectual disabilities’ experiences of these adapted interventions. Such research is important for identifying service users’ views on the helpful and challenging aspects of psychological interventions to ensure that they meet the needs of people with intellectual disabilities. To consolidate this research, a systematic review using a meta-ethnographic approach was undertaken. A systematic search identified 16 relevant studies. These studies were reviewed, critically appraised and key themes were extracted. Five key concepts were identified: adapting to therapy, the therapeutic environment, group dynamics, the therapeutic relationship and the impact of therapy on life. The need for further consideration of power differentials within the therapeutic relationship and further adaptations to ensure accessibility of therapy for people with intellectual disabilities is discussed.
(Publisher abstract)
Subject terms:
learning disabilities, psychotherapy, systematic reviews, literature reviews;
University of Leicester. Nuffield Community Care Studies Unit
Publication year:
1995
Pagination:
57p
Place of publication:
Leicester
The Health of the Nation document (1992) identified services for mentally disordered offenders (MDOs) as a priority problem. It is against this background that Leicestershire Health has asked for a literature review of services for this client category in order to inform the commissioning process. This review is chiefly concerned with the overall pattern of services which should be available for MDOs and does not include material specific to the technical skills of the various professionals who provide help for MDOs. For example, there is no discussion of the sorts of therapies which can be used for different sorts of offenders. It is assumed that such information will form part of individual professionals' own skills. Information is not given on specific client categories, such as women, ethnic minorities and people with learning disabilities, or on consumer views.
The Health of the Nation document (1992) identified services for mentally disordered offenders (MDOs) as a priority problem. It is against this background that Leicestershire Health has asked for a literature review of services for this client category in order to inform the commissioning process. This review is chiefly concerned with the overall pattern of services which should be available for MDOs and does not include material specific to the technical skills of the various professionals who provide help for MDOs. For example, there is no discussion of the sorts of therapies which can be used for different sorts of offenders. It is assumed that such information will form part of individual professionals' own skills. Information is not given on specific client categories, such as women, ethnic minorities and people with learning disabilities, or on consumer views.
Extended abstract:
Author:DREWETT Alison Title: A literature review of services for mentally disordered offenders Publisher: University of Leicester. Nuffield Community Care Studies Unit, 1995
Summary
This review is chiefly concerned with the overall pattern of services which should be available for mentally disordered offenders (MDOs), and does not include material specific to the technical skills of the various professionals who provide help for MDOs. For example, there is no discussion of the sorts of therapies which can be used for different sorts of offenders. It is assumed that such information will form part of individual professionals' own skills. Information is not given on specific client categories, such as women, ethnic minorities and people with learning disabilities, or on consumer views.
Context
The Health of the Nation document (1992) identified services for mentally disordered offenders (MDOs) as a priority problem. It is against this background that Leicestershire Health asked for a literature review of services for this client category in order to inform the commissioning process.
Contents
The introduction gives the background and explains how the review was carried out, concentrating chiefly on collecting unpublished and less readily available information (‘grey literature') from the varied agencies which purchase and provide services for this client category. Section 2 discusses numbers of mentally disordered offenders and the psychiatric needs of prisoners, those in contact with the probation service, those taken to police stations, and all offenders. Section 3 is about multi-agency working, discussing the problems and concluding that many agencies are now engaging in a multi-disciplinary approach and authorities are beginning to try to identify what works. The following chapters examine some of the services being put in place. Section 4 is on diverting MDOs, asking why this is done, describing where diversion takes place and the numbers identified and diversion schemes, and discussing effectiveness. Secure accommodation for mentally disordered offenders is discussed in Section 5: prisons, special hospitals, regional secure units, and psychiatric wards, ending with service developments in providing a coherent secure service and assessing risk. Section 6 covers community care for MDOs, with sections on training and service problems. The publication concludes that although the principle of providing health care instead of punishment for MDOs is not new, coherent health and social care is not available for all in the UK , and the level depends very much on where they live. Agencies must work together. The comparatively few offenders presenting serious danger tend to distort responses, with the risk of resources being concentrated on them at the expense of the far more numerous others. Some psychopaths may not receive any health care because they are considered untreatable. All parts are interdependent and repercussions of neglect will be felt elsewhere. While, in theory, there is a push towards helping all types of clients have access to generic services, there is nevertheless some call for specific services staffed by for generic professionals.those trained to help MDOs – as if, in practice, generic services were not answering. Given the scale of need, services are unlikely to be able to given all the help all MDOs need, so there must be a balance between providing highly specialised services on the one hand and, on the other, educating staff in generic services so that they are able to respond to the needs of MDOs. Specialist staff should be available in an advisory capacity
64 references
Subject terms:
learning disabilities, literature reviews, mental health services, mentally disordered offenders;
Journal of Intellectual Disabilities, 24(2), 2020, pp.268-283.
Publisher:
Sage
Place of publication:
London
Background: As part of their care, adults with intellectual disabilities are often subject to restrictive interventions including restraint. Method:
A review examining the prevalence of restraint use with people with intellectual disabilities and the characteristics associated with its use. Results: The seven papers identified used quantitative methodologies and had cross-sectional designs. Prevalence rates of restraint ranged from 11% to 78%, multiple forms of restraint were common. Most studies focused on characteristics within the person with an intellectual disability, three considered external factors. Challenging behaviour was the most consistent characteristic associated with the use of restraint, but how this was defined varied. Conclusions: The review highlights a need for more consistent means of defining and measuring restraint and its associated characteristics. Future research into this area may also want to focus on the context of restraint such as whether it is the least restrictive option used.
(Publisher abstract)
Background: As part of their care, adults with intellectual disabilities are often subject to restrictive interventions including restraint. Method:
A review examining the prevalence of restraint use with people with intellectual disabilities and the characteristics associated with its use. Results: The seven papers identified used quantitative methodologies and had cross-sectional designs. Prevalence rates of restraint ranged from 11% to 78%, multiple forms of restraint were common. Most studies focused on characteristics within the person with an intellectual disability, three considered external factors. Challenging behaviour was the most consistent characteristic associated with the use of restraint, but how this was defined varied. Conclusions: The review highlights a need for more consistent means of defining and measuring restraint and its associated characteristics. Future research into this area may also want to focus on the context of restraint such as whether it is the least restrictive option used.
(Publisher abstract)
Subject terms:
learning disabilities, restraint, challenging behaviour, therapy and treatment, literature reviews;
Journal of Applied Research in Intellectual Disabilities, 32(5), 2019, pp.1007-1017.
Publisher:
Wiley
Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: This study conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of “good” IPA work. Results: Twenty‐eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as “good” quality; 16 (57%) were “acceptable”, and 6 (21%) were “poor.” This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. This study encourages researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.
(Edited publisher abstract)
Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: This study conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of “good” IPA work. Results: Twenty‐eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as “good” quality; 16 (57%) were “acceptable”, and 6 (21%) were “poor.” This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. This study encourages researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.
(Edited publisher abstract)
Subject terms:
literature reviews, learning disabilities, research methods, participatory research, qualitative research;
The proposed duty on the public sector to promote disability equality will require employers to take action in areas which are currently under-developed such as: involving disabled staff; training and awareness raising; monitoring disability within the workforce and among job applicants; and taking an organisation-wide strategic approach. Guidance needs to convince employers of the value to them of taking action, involving a prior understanding of what motivates them to change.
The proposed duty on the public sector to promote disability equality will require employers to take action in areas which are currently under-developed such as: involving disabled staff; training and awareness raising; monitoring disability within the workforce and among job applicants; and taking an organisation-wide strategic approach. Guidance needs to convince employers of the value to them of taking action, involving a prior understanding of what motivates them to change.
Extended abstract:
Author:
HIRST Michael; et al.;
Title
The employment of disabled people in the public sector: a review of data and literature. Publisher
University of York. Social Policy Research Unit, 2004
Summary
This review, in summer 2004, covers recent trends in public sector employment, employment circumstances and characteristics of disabled public sector employees, research on employers' attitudes and practices in employment of disabled people, sickness absence, disabled people's employment experiences, the role of services in promoting employment in the public sector, and evidence from employers' documentation of effective policies and practices.
Context
The proposed duty on the public sector to promote disability equality will require employers to take action in areas which are currently under-developed such as: involving disabled staff; training and awareness raising; monitoring disability within the workforce and among job applicants; and taking an organisation-wide strategic approach. Guidance needs to convince employers of the value to them of taking action, involving a prior understanding of what motivates them to change.
Contents
Chapters 2 and 3 draw on secondary analysis of the Labour Force Survey (LFS). Chapter 2 describes trends in the number and proportion of disabled people employed in the public sector in Great Britain from spring 1998 to spring 2003. Chapter 3 uses the most recently available LFS data to describe the employment circumstances and characteristics of disabled public sector employees. In both chapters data are presented on disabled compared with non-disabled employees in the public sector only. Chapters 4-7 summarise the available published research literature on the employment of disabled people in the public sector in Great Britain . Much of the literature in the field of employment and disabled people was already known to the research team, as a consequence of having undertaken searches for several previous reviews as well as being active researchers in the field. Existing knowledge was up-dated and extended by searches on Academic Search Premier (EBSCO), selected academic publishers websites, government and industry websites, media databases and library databases. It is important to note that almost no British research literature specifically on the topic of public sector employment of disabled people was found through searches. To identify material of relevance to the review it was necessary to trawl through the literature on the wider topic of employment of disabled people. As will be explained further, it was sometimes found necessary to present the wider context to the findings relating to the public sector.
Chapter 4 reports the research on the attitudes and employment practices of public sector organisations. Chapter 5 looks at sickness absence among disabled people and employer perceptions that they will take more sick leave, examines recent evidence on sickness absence in the public sector and reports findings of an important analysis that takes account of sector in characteristics associated with increased risk of job loss. Chapter 6 reviews the limited literature on the public sector employment experiences of disabled people, people with chronic and mental health conditions, and deaf people. Chapter 7 examines research on practical interventions, such as government programmes, to improve the chances for disabled people to enter, retain and progress in public sector jobs. It should be noted that there is no uniformity in how ‘disabled people' is defined in the studies reviewed. Wherever possible the definitions used in the studies are used. It should also be noted that the scope of some surveys extends to include Northern Ireland . Chapter 8 presents findings from a trawl of public sector employers to identify effective employment policies and practices based on their own documentation. Chapter 9 concludes with the main messages from the research and recommendations to the DRC.
Conclusion
It is encouraging to find, from the analysis of the LFS, rather few apparent differences in the characteristics of disabled and non-disabled employees in the public sector, though disparities in earnings and occupying senior positions need further investigation and when the quality of employment is considered disabled employees in certain sub-sectors of the public sector are disadvantaged. It is also encouraging that the public sector outperforms the private sector in some respects, though it is hard to explain why. The proposed duty on the public sector to promote disability equality will require employers to take action in areas which are currently under-developed such as: involving disabled staff; training and awareness raising; monitoring disability within the workforce and among job applicants; and taking an organisation-wide strategic approach. Guidance needs to convince employers of the value to them of taking action, involving a prior understanding of what motivates them to change. Development work might include further investigation of effective practice through equality, diversity and disability networks and recipients of award and accreditations. At the same time, steps must be taken to counter misunderstandings about disability, with active campaigning to educate the public about disability in general and legislation on disability in particular, and specifically to promote awareness of which conditions are included under the DDA and help to dispel myths about employing disabled people. There is scope for further analysis of the LFS to fill gaps in knowledge: multivariate analysis to investigate reasons for the reported differences between disabled and non-disabled employees, with priority given to pay differentials; comparison of disabled people's employment experiences across sectors, to provide the context within which to evaluate and interpret findings related to the public sector; longitudinal analysis to explore employment trajectories of disabled people, including movements in and out of the public sector; and longitudinal analysis to investigate in more detail the finding that public sector employees have a lower risk of leaving employment following onset of disability compared with those working in other industry divisions. There is a role for the DRC to influence the design of further research to introduce consistency in the definition of the public sector and in survey design so that the impact of the public sector duty can be tracked over time. There is a need for research that establishes what leads to change and which takes account of the perspectives of disabled and non-disabled staff in different positions within public sector employing organisations.
54 references
ISBN 0 9549327 0 6
Subject terms:
learning disabilities, literature reviews, physical disabilities, public sector, employment;
Purpose: The purpose of this paper is to present an overview of the extant literature on diabetes in people with learning disabilities (LD) and discuss implications for policy, practice and research. Design/methodology/approach: The key findings are extracted from qualitative and quantitative studies and recent systematic literature reviews. These findings are discussed in the areas of prevalence, treatments and implications. Findings: The complex health needs of people with LDs who are diagnosed or at risk of developing diabetes are gaining wider recognition, and recent studies have begun to implement and evaluate potential solutions. Further analysis and alignment between services is required. Originality/value: Following a dearth of studies on diabetes in people with LD, the past decade has seen a sudden upsurge in large and diverse set of studies. This paper provides an overview on the extent of this study.
(Edited publisher abstract)
Purpose: The purpose of this paper is to present an overview of the extant literature on diabetes in people with learning disabilities (LD) and discuss implications for policy, practice and research. Design/methodology/approach: The key findings are extracted from qualitative and quantitative studies and recent systematic literature reviews. These findings are discussed in the areas of prevalence, treatments and implications. Findings: The complex health needs of people with LDs who are diagnosed or at risk of developing diabetes are gaining wider recognition, and recent studies have begun to implement and evaluate potential solutions. Further analysis and alignment between services is required. Originality/value: Following a dearth of studies on diabetes in people with LD, the past decade has seen a sudden upsurge in large and diverse set of studies. This paper provides an overview on the extent of this study.
(Edited publisher abstract)
Subject terms:
diabetes, learning disabilities, literature reviews, self-directed support, policy, complex needs;
Quality in Ageing and Older Adults, 20(4), 2019, pp.162-178.
Publisher:
Emerald
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
(Edited publisher abstract)
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
(Edited publisher abstract)
Subject terms:
literature reviews, ageing, carers, learning disabilities, health needs, needs, older people;
Journal of Applied Research in Intellectual Disabilities, 32(3), 2019, pp.533-542.
Publisher:
Wiley
Background: A 2005 review by Beart, Hardy and Buchan, asking how people with intellectual disabilities view their social identities, has been widely cited, indicating this important topic needs an updated review. This review covers research on how people with intellectual disabilities view their ascribed label; to what extent they ascribe it to themselves; and whether they recognize it as devalued in society. Method: Rapid review methodology using PsycINFO, citation‐ and hand‐searching identified relevant studies. Results: The 16 studies identified indicate that the majority are aware of their ascribed label, or acknowledge they are “different”. Others reject it, focusing on alternative attributes or roles. Most recognize others view the label negatively and express feelings of shame, anger and powerlessness. Conclusions: The review advances our understanding of social identity formation in people with intellectual disabilities, with implications for future research and practice to support construction of positive social identities and stigma resistance.
(Edited publisher abstract)
Background: A 2005 review by Beart, Hardy and Buchan, asking how people with intellectual disabilities view their social identities, has been widely cited, indicating this important topic needs an updated review. This review covers research on how people with intellectual disabilities view their ascribed label; to what extent they ascribe it to themselves; and whether they recognize it as devalued in society. Method: Rapid review methodology using PsycINFO, citation‐ and hand‐searching identified relevant studies. Results: The 16 studies identified indicate that the majority are aware of their ascribed label, or acknowledge they are “different”. Others reject it, focusing on alternative attributes or roles. Most recognize others view the label negatively and express feelings of shame, anger and powerlessness. Conclusions: The review advances our understanding of social identity formation in people with intellectual disabilities, with implications for future research and practice to support construction of positive social identities and stigma resistance.
(Edited publisher abstract)
Subject terms:
learning disabilities, stigma, self-concept, literature reviews, user views, self-esteem;
Health Expectations, 20(6), 2017, pp.1189-1200. Online only
Publisher:
Wiley
Background: The proliferation of “accessible information” for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities.
Objective: To review and synthesise the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach.
Search strategy: Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods.
Inclusion criteria: Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities.
Data extraction and synthesis: The authors organised the papers into five groups according to similarity in authors’ writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organisational identities.
Main results: The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualised materials, (ii) literacy as contextualised skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation.
Conclusions: Individually tailored information is more likely to meet personalised health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups.
(Edited publisher abstract)
Background: The proliferation of “accessible information” for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities.
Objective: To review and synthesise the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach.
Search strategy: Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods.
Inclusion criteria: Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities.
Data extraction and synthesis: The authors organised the papers into five groups according to similarity in authors’ writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organisational identities.
Main results: The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualised materials, (ii) literacy as contextualised skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation.
Conclusions: Individually tailored information is more likely to meet personalised health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups.
(Edited publisher abstract)
Subject terms:
literature reviews, access to information, learning disabilities, health care, service users, needs;