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A comparison of dementia assessment services for people with intellectual disabilities Series: Tizard Learning Disability Review ; 26 (3) 134-141: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-11-2020-0033
- Purpose This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value To the best of the authors' knowledge, this is the first paper to compare dementia assessment provision between different services in England.
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Are narrative therapy groups effective for people with intellectual disabilities? A critical review of the literature Series: Tizard Learning Disability Review ; 25 (4) 213-222: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-05-2020-0008
- Purpose Narrative therapy has been suggested as particularly relevant to people with intellectual disability (ID), with group formats potentially offering additional benefits. This paper aims to critically review studies which evaluated narrative group interventions for people with ID. Design/methodology/approach The seven papers identified for review were critically appraised for their quality using a quality appraisal tool appropriate to their design, along with additional factors including adaptations made to improve accessibility. Findings The studies suggest that there may be some small benefits of narrative group therapy for those with ID. However, alongside issues limiting the studies' evaluations, it is noted that the research paradigms used in the studies conflict with narrative approaches. Research limitations/implications The limited evidence base suggests the need for further research. The randomised controlled trial would ordinarily be seen as the gold standard for such research. However, narrative interventions may require a different approach to evaluation. Originality/value This is the first review of published literature on the evaluation of narrative therapy groups for people with ID.
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Challenging behaviour and offending behaviours Series: Tizard Learning Disability Review ; 25 (3) 117-124: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-04-2020-0005
- Purpose The purpose of this paper is to explore three main areas in relation to the interface between challenging behaviour and offending. Design/methodology/approach The first aim is to explore the labelling of behaviours as challenging or offending behaviour in the light of legal definitions, staff knowledge and beliefs and the mental capacity and mental health acts. The second is to explore challenging behaviour as a risk factor for offending in people with Intellectual Disability (ID).The third aim is to discuss the challenging behaviour as a barrier to discharge from secure services. Findings There is limited research suggesting that challenging behaviour such as physical aggression can lead to longer stay in forensic services, and this warrants further research. Originality/value This paper aims to promote discussion about the interface of offending and challenging behaviour in people with IDs and to promote best practice.
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Commentary on "depression and people with a learning disability: a way forward" Series: Tizard Learning Disability Review ; 25 (1) 22-25: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-12-2019-0041
- Purpose The purpose of this paper is to provide a commentary on Andrew Jahoda's article "Depression and people with a learning disability: a way forward". Design/methodology/approach The paper considers depression and other issues of psychological well-being from the perspective of the eligibility criteria for social care in England as enshrined in the 2014 Care Act. Findings There is a danger of issues of psychological well-being being seen as health rather than social care needs. A more integrated perspective is required. Originality/value The paper illustrates the importance of the role of social care provision in promoting the well-being of people with learning disabilities.
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Commentary on "Including people with intellectual disabilities in the development of their own positive behaviour support plans" Series: Tizard Learning Disability Review ; 26 (4) 206-211: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-09-2021-0028
- Purpose The purpose of this paper is to broaden the discussion on some of the barriers and solutions for co-production in positive behaviour support (PBS) planning as identified in the paper "Including people with intellectual disabilities in the development of their own Positive Behaviour Support Plans". Design/methodology/approach Drawing on the literature associated with co-production in PBS planning, this commentary will reflect on the wider systems and culture needed to enable successful implementation of this way of working. Findings Co-production in PBS planning is recommended as part of best practice guidelines. However, there is limited research in the area of co-production with regards to PBS and use of augmentative and alternative communication methods. Collaboration among speech and language therapy and PBS practitioners is an important factor for co-production to achieve the best outcomes for people with learning disabilities who display behaviours of concern. Along with identifying a range of communication tools/strategies needed for PBS assessment/planning, it also requires a whole systems approach and culture shift to ensure the necessary foundations are in place. Originality/value Co-production in PBS planning remains an under practiced way of working. This commentary builds on the barriers and solutions identified for co-production and provides further insight into what might be needed to achieve this in health and social care settings.
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Commentary on "Keep safe: collaborative practice development and research with people with learning disabilities" Series: Tizard Learning Disability Review ; 25 (4) 181-184: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-07-2020-0013
- Purpose Inspired by the work of the Keep Safe Advisory Group, this paper aims to explain and make the case for co-production as a powerful model for working alongside people with learning disabilities. Design/methodology/approach The collaborative approach of the Keep Safe advisory group is the authors' springboard for a deep dive into the power and potential of co-production as a model. As organisational leaders - one with and one without a learning disability - the authors draw on their personal experience to argue that co-production is essential to recognising the adulthood of people with learning disabilities. Findings Co-production means the equal sharing of power and responsibility from the start, best served by the leap of faith of a blank agenda. Co-production values different kinds of expertise as complementary - broadly considered as expertise from lived experience and professional expertise. When working co-productively, a deep investment of time to understand people pays dividends in outcomes and everyone's personal and professional growth. Co-production enriches the lives of everyone taking part. Originality/value Co-production, though common currency in health and social care, remains too rarely understood and practiced. Readers will benefit from this reflective viewpoint, which aims to clarify and deepen what co-production really means. In particular, enabling people with learning disabilities to take responsibility for themselves and others is rarely considered but is presented here as foundational to human maturity and adulthood.
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Commentary on "Multisensory rooms: essential characteristics and barriers to effective practice" Series: Tizard Learning Disability Review ; 25 (2) 77-81: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-01-2020-0001
- Purpose The purpose of this paper is to provide a commentary on Grace's article on multisensory rooms. Design/methodology/approach This paper gives a historical overview of the emergence and evolution of multi-sensory environments (MSEs) together with an outline of a current research project seeking to support best practice. Findings MSEs have become a standard feature in special educational needs schools in the UK with government building guidelines now stipulating the inclusion of at least one sensory room within any such provision. However, there is little research-based evidence from which design decisions can be informed. Instead, previous research has tended to focus on the effectiveness of MSEs for specific user groups. Originality/value The outlined research will establish some initial design principles for MSEs.
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Commentary on "The experiences of older carers of people with learning disabilities: 'I just carry on with it'" Series: Tizard Learning Disability Review ; 26 (1) 58-62: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-11-2020-0037
- Purpose The purpose of this paper is to provide a commentary on the article by Rachel Forrester-Jones on the experiences of older carers of people with learning disabilities. Design/methodology/approach The commentary reflects on the themes identified in the original article, comparing its findings to the lived experiences of those taking part in older carers' projects in Oxfordshire, England. Findings Similar broad themes were identified in both samples. Given these findings, the extent to which matters have changed, since the Valuing People work on older carers is considered. Originality/value The paper discusses policy and practice implications to improve the quality of life of older carers and their families and explores how the voice of older carers can be strengthened to enable them to shape practice and policy.
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Commentary on "What are the experiences of professionals working with parents with learning disabilities? A meta-ethnography" Series: Tizard Learning Disability Review ; 26 (1) 28-33: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-12-2020-0039
- Purpose The purpose of this paper is to provide a commentary on Pytlowana and Stenfert Kroese's article on the experiences of professionals working with parents with learning disabilities by exploring challenges and good practice in this area. Design/methodology/approach Key areas of practice were identified for further exploration by drawing on research studies with parents with learning disabilities. Findings While there is growing evidence of good practice around working with parents with learning disabilities, a number of challenges around communication and relationship-based practice remain. The paper recommends further training and education for those working in this complex area of practice. Originality/value The paper adds value by bringing together evidence from across a number of studies to highlight good practice.
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Commentary on a "unified approach to behaviours that challenge": a social care provider perspective Series: Tizard Learning Disability Review ; 25 (3) 159-162: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-08-2020-0020
- Purpose This paper aims to consider the extent to which academic research, as described by the papers in this journal, has helped the large-scale use of positive behaviour support (PBS) with people with learning disabilities whose behaviour may be challenging. Design/methodology/approach The author explores the issue from the perspective of a social care provider seeking to implement PBS successfully across the organisation's services. Findings The author concludes that research needs to refocus its efforts if it is to make a real contribution and argues that future emphasis should be on implementation. Originality/value This commentary articulates the concerns and experiences of a service provider that has striven to implement effective, evidence-based support, informed by relevant research, for many years. Such a perspective is rarely heard in academic PBS research literature.
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Commentary on: "Ordinary lives" means ordinary schools: towards a unitary 0-99 years policy for adults and children with learning disabilities Series: Tizard Learning Disability Review ; 25 (1) 47-52: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-11-2019-0034
- Purpose The purpose of this study is to reflect on some of the challenges faced by caregivers when making decisions relating to school placements for their child with a learning disability. Design/methodology/approach Quotes from parents and caregivers, contacted via a national syndrome support charity, are shared, along with broader perspectives gained through the charity's helpline service. Findings A number of themes are discussed, including friendships and role models; expectations and educational targets; training, speciality and capacity of staff and managing a widening gap. Originality/value When considering the future of education provision, it is important to consider some of the tensions between an ideology of inclusion and the current realities of service provision. To create effective solutions to achieving more effective inclusion, the concerns and experiences of families, as well as children, must be considered.
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Depression and people with a learning disability: a way forward Series: Tizard Learning Disability Review ; 25 (1) 13-21: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-03-2019-0010
- Purpose The purpose of this paper is to outline what is known about the prevalence, causes and treatment of depression for people with learning disabilities, with a focus on psychosocial interventions. Design/methodology/approach This is a narrative review, and will provide evidence-based guidance for practitioners and those managing service delivery. Findings Depression is just as prevalent among people with learning disabilities as it is in the wider population and they are frequently exposed to known vulnerability factors for low mood such as lack of social support and purposeful activity. Yet there remains a paucity of evidence about effective interventions for depression. Originality/value Growing evidence about the effectiveness of psychological interventions for people with learning disabilities and depression is promising but insufficient. To make meaningful change, there also needs to be an implementation strategy that encompasses the broader context of people's lives, including family, care and work settings.
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Diabetes and people with learning disabilities: issues for policy, practice, and education Series: Tizard Learning Disability Review ; 25 (1) 26-34: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-05-2019-0020
- 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.
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Experiences of children with special educational needs and disabilities and their families in the United Kingdom during the coronavirus pandemic Series: Tizard Learning Disability Review ; 25 (4) 229-235: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-09-2020-0025
- Purpose The purpose of this paper is to outline the experiences of children with special educational needs and disabilities (SEND) and their families during the coronavirus pandemic. Design/methodology/approach This paper draws on research gathered and collated by three different organisations working with families of children and young people with SEND. Findings There were a number of common findings across all three surveys. In particular: the rapid collapse of external support for children and families; the reduction/withdrawal of support exacerbated the stress and exhaustion already experienced by many families; it proved very difficult to establish home learning and get adequate support from schools; there was little government recognition of families' vulnerability and need for support; and, paradoxically, a significant minority of children and families reported increased well-being. Originality/value Findings carry clear implications both for the provision of child and family support during any further lockdowns and, more generally, in respect of government policy and funding of family support.
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Including people with intellectual disabilities in the development of their own positive behaviour support plans Series: Tizard Learning Disability Review ; 26 (4) 199-205: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-11-2020-0035
- Purpose People with intellectual disabilities are not routinely involved in the assessment of their behaviours that challenge, as this is often completed by a proxy respondent and the health-care professional. This is contrary to guidance stating that everyone should be involved in the planning of their care. This paper aims to show how health-care professionals can support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the subsequent development of their own positive behaviour support (PBS) plans. Design/methodology/approach A non-systematic review of the existing literature on improving the engagement of people with learning disabilities in health-care planning, and specifically PBS planning, was undertaken. Appropriate papers were included in this paper. Findings There are several evidence-based methods to improve people's engagement in the assessment of their own behaviours that challenge and then the development of their PBS plans. These methods are discussed in terms of their application to supporting people to communicate and involving them in the process of developing a valid and meaningful PBS plan. This is a relatively new focus within the literature, and further research should focus on increasing engagement in the process, as well as monitoring how co-production affects PBS outcomes. Originality/value This paper summarises some of the approaches used to support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the development of their own PBS plans. This should encourage health-care professionals to consider how to use alternative and augmentative communication strategies to facilitate co-production in their own clinical practice.
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Keep Safe: collaborative practice development and research with people with learning disabilities Series: Tizard Learning Disability Review ; 25 (4) 173-180: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-12-2019-0040
- Purpose This collaborative paper (working together) describes collaborative practice development and research by and with people from the learning disabilities community. This paper aims to show some of the activities which supported the collaborative practice development and research to show and encourage others to do more collaboration. The paper format is based on a previous collaborative paper published in the Tizard Learning Disability Review (Chapman et al., 2013). Design/methodology/approach The collaborative practice development and feasibility study [1] focuses on an intervention called Keep Safe. This is an intervention for young people with learning disabilities who are 12 years and older and have shown "out-of-control" or harmful sexual behaviour. Findings The paper gives examples of activities of the Keep Safe Advisory Group in planning, doing and thinking about Keep Safe development and feasibility. The authors list some good things and some difficulties in collaborating. They look at which parts of Frankena et al.'s (2019a) Consensus Statement on how to do inclusive research were done, which ones were not, and why. Social implications The paper ends with some thoughts about collaborating with people from the learning disabilities community: for people with learning disabilities, practitioners and researchers. Originality/value The paper is original in its illustration of collaborative practice development and research and measuring the activities against the inclusive research consensus statement.
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Multisensory rooms: essential characteristics and barriers to effective practice Series: Tizard Learning Disability Review ; 25 (2) 67-75: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-10-2019-0029
- Purpose This paper aims to identify the characteristics practitioners consider essential to effective multisensory rooms and the barriers they experience when trying to realise the potential of such rooms. Design/methodology/approach The paper presents semi-structured interviews with 27 multisensory room practitioners from a range of backgrounds followed by analysis to identify key characteristics and barriers. Findings Eleven positive room characteristics were identified. The three deemed most significant were that the rooms are dark, activity associated and uninterrupted spaces. Two negative room characteristics were identified: inaccessible design and broken equipment. Ten barriers to effective multisensory room practice were identified and grouped according to themes of logistics, suboptimal usage and practitioner capabilities. Research limitations/implications The research focuses on a small self-selecting sample, coded by one person acting independently of any institution. This is an under researched area which would benefit from further more rigorous investigation. Practical implications This research enables practitioners to remove barriers to effective multisensory room practice and to focus on the characteristics most significant in generating benefits for room users. Understanding of the essential characteristics and potential barriers to effective practice will allow practitioners to better exploit limited resources of time, money and staffing. Originality/value Past research into multisensory rooms has focused on specific user groups or specific multisensory environments. This research examined multisensory room practice across both a range of environments and a range of users, giving an original overview of current multisensory room usage in the UK.
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Ordinary lives means ordinary schools: towards a unitary 0-99 years policy for adults and children with learning disabilities Series: Tizard Learning Disability Review ; 25 (1) 40-46: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-05-2019-0021
- Purpose This paper aims to look forward to the next generation of policymaking on learning disability and recommends a unitary strategy covering all phases of life including childhood. Design/methodology/approach In this paper, the author addresses the policy gap between inclusion in ordinary ("mainstream") schools and inclusion in ordinary adult life. The author asks why what has been accepted, at least in principle, for the adult two-thirds of the learning disabled population is still contested for the other, younger third. In the following sections, the author summarises the present discrepancy, compares the rights of children in general with those of people with learning disabilities and outlines the rationale for a 0-99 years focus in research and practice on learning disability, and for future government strategy to establish a 0-99 policy. Findings It is in the broad context of a unitary 0-99 years approach that policymaking must in future be addressed. The education of children is key to the success of their adult lives, and makes the policy of educating them together in ordinary schools (i.e. giving them from the start the "ordinary lives" that are the main goal of adult policy) an imperative. Originality/value The need to consider children's rights in a general sense has not previously been applied to the field of policymaking for adults with learning disabilities.
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The experiences of older carers of people with learning disabilities: "I just carry on with it" Series: Tizard Learning Disability Review ; 26 (1) 48-57: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-08-2020-0018
- Purpose Because people with learning disabilities (LD) are living longer, their family carers are likely to continue their caring role for longer. This study aims to explore the experiences of older carers of people with LD. Design/methodology/approach In total, 16 interviews with older carers were carried out and analysed qualitatively. Findings Three main themes emerged from the data: "transition to retirement is a misnomer"; "impact of caring role"; and "fears for the future". Originality/value Previous studies have not focussed on the specific experiences of "older" carers and their situation risks going unnoticed. Their experiences should be acknowledged by services and society and meaningful support provided.
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The informal culture of a direct care staff team supporting people with intellectual disabilities who present with behaviours that challenge Series: Tizard Learning Disability Review ; 26 (3) 160-168: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-01-2021-0001
- Purpose Research into culture within intellectual disability services, has predominantly focussed on small group homes in Australia. The current investigation aimed to explore the transferability of the dimensions of culture identified in the literature, to a residential Intellectual Disability service in the UK. The purpose of this study was to better understand the impact of informal culture upon the behaviour of direct care staff, particularly around managing behaviour that challenges. Design/methodology/approach Semi-structured interviews were conducted with direct care staff. Interview transcripts were analysed thematically using template analysis. Findings Themes regarding leadership, perceptions of managers, team functioning, and relationships between direct care staff and service users, were identified, corroborating the existing literature. Additional themes relating to being aware of the risks posed by service users, and the emotional impact of behaviour that challenges, also emerged. Originality/value To the best of the authors' knowledge, this is the first qualitative study to explore informal culture within a community residential Intellectual Disability service in the UK.
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Video-modelling as an effective solution for coaching carers of autistic adults Series: Tizard Learning Disability Review ; 25 (4) 197-206: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-03-2020-0004
- Purpose Teaching skills to autistic individuals can increase independence and quality of life. However, staff supporting such individuals often lack the skills needed to teach skills. This study evaluated the use of digital videos (DVDs) to coach three care staff in teaching tooth-brushing skills to three autistic adults with co-occurring intellectual disabilities. Design/methodology/approach Personalized DVDs provided guidance on key elements of teaching new skills, including graded assistance, contingent reinforcement and environmental configuration. Participants watched their DVD six times over several days. Its impact on their teaching performances was evaluated using a multiple-baseline design. Social validity was investigated by distributing a questionnaire among the participants and family members of autistic adults. Findings Teaching performances improved substantially following training. The coaching method was rated positively by participants and family members. Originality/value Video-modelling technology can be used effectively to provide an efficient, individualized and acceptable method of coaching for care staff.
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What are the experiences of professionals working with parents with learning disabilities? A meta-ethnography Series: Tizard Learning Disability Review ; 26 (1) 14-27: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-06-2020-0012
- Purpose It has been recommended that social, health and other relevant professionals work collaboratively to support parents with learning disabilities (LD) and their children. A number of qualitative studies have investigated the experiences of professionals who work with parents with LD. A synthesis of these experiences has not as yet been produced, and therefore, the purpose of this paper is to review how professionals experience working with parents with LD to inform practice guidelines on how parents with LD can be supported most effectively. Design/methodology/approach A systematic search took place using five databases and 15 peer-reviewed papers were identified based on the relevant inclusion and exclusion criteria. The quality of each included paper was systematically evaluated. Meta-ethnography was used to synthesise the qualitative data from the identified studies. Findings The synthesis offered six themes: concerns about knowledge and experience, the importance of and difficulties with available support, the importance of and challenges with liaison with and between professionals, differences in power, conflicting priorities - parents or children?, the personal impact on professionals. Originality/value The results are discussed in the context of previous research. Recommendations for future research and practice innovation are made.
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